Macy, my 7 y/o Newf - Macroadenoma (Macy has passed) [Archive] - Canine Cushing's Information and Support Forums

ktzndgs

06-10-2010, 10:57 AM

My 7 year old Newf (97 pounds) was just diagnosed with PDH Cushing's (hope I'm saying that right). She's had symptoms for awhile - excessive thirst, panting, exercise intolerance, some urinating in the house (not too much though), extreme hunger, hair loss. It took awhile to be referred with other stuff suspected as the cause but we've finally seen an internist who did an ultrasound of her abdomen and, after finding enlarged adrenals, he ran an acth stimulation test. That test revealed.....

cortisol ng/ml baseline 59.9*, norm 2.1-58.8, post ACTH 223.7*, norm 65.0-174.6
antrostenedione ng/ml baseline .64*, norm .05-.57, post ACTH 6.40*, norm .27-3.97
estradiol pg/ml baseline 93.2*, norm 30.8-69.9, post ACTH 85.7*, norm 27.9-69.2
17OH Progesterone ng/ml baseline .27, norm .08-.77, post ACTH 5.75*, norm .40-1.62

She's now being treated with 120mg Vetoryl, flax hull w/lignans and melatonin. We finally got it all together and started her full treatment yesterday and her water consumption has already dropped! She had been drinking 1.5 quarts of water just during the night plus what she drinks all day long. That had decreased to about a quart at night but last night her intake was about half of that. Is it normal for water intake to decrease that quickly?

My girl already had eosinophillic ibd that we control through diet. She was diagnosed at age 2 via multiple biopsies done when she was spayed. And she takes proin for spay incontinence.

If anyone can offer any information about what I should expect in the next few months I'd love to hear it. The vet wanted her back between 7-14 days after her first Vetoryl dose for another ACTH stimulation test. Since her water intake decreased so much after one dose I think I'll take her back at around 8-9 days.

Thanks!
Kathy

Harley PoMMom

06-10-2010, 01:36 PM

Hi Kathy,

Welcome to you and your girl from me and my boy Harley! So sorry for the circumstances that brought you here but glad you found this forum.

I see that you had an acth/steroid hormone panel test done on your girl. I was wondering, if you wouldn't mind telling me, where it was done at?

The dosing of 120mg of Vetoryl, is that once a day? Not sure if your IMS told you, but the melatonin has to be the regular melatonin, not the fast-acting or rapid-releasing kind. At the end of my post I will provide a link that has information about lignans.

Some pups on Vetoryl do react very quickly to the medicine, please keep a close eye on her. When you are getting her stimmed next time you may want to get her electrolytes checked also. I will include a link to Dechra's U.S. Product Insert for you that you can print out, it has alot of important information on it about dosing and how the stim test should be done, adverse reactions...etc.

If you have any questions, please do not hestitate to ask, ok.

Love and hugs,
Lori

Links

Trilostane/Vetoryl Information and Resources
http://www.k9cushings.com/forum/showthread.php?t=185

Dechra's U.S. Product Insert
http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf

LIGNANS (Phytonutrients)
http://www.vet.utk.edu/diagnostic/endocrinology/pdf/20100501-LIGNAN-Write-Up-Revision01.pdf

ktzndgs

06-10-2010, 03:42 PM

Hi Lori!

I was in the midst of replying to your post when I wiggled my mouse and my message disappeared so this might be a repeat of an incomplete post. I'm sorry. I'll get the hang of this.

The ACTH test was done at the Univ. of Tenn. The internist we see seems well versed in Cushing's and even provides a 5 page brochure that he wrote so I feel ok about him treating her. I'll discuss the idea of testing her electrolytes.

I mix the flax hulls into her breakfast along with the melatonin and her other supplements. I'm very fortunate that she scarfs everything down without a thought. After she finishes breakfast I put her Vetoryl caps on little quarter size peanut butter sandwiches and giver one open faced sandwich at the end to make sure she swallows. She always has a large drink of water after she eats so I'm comfortable the pills go down.

I'm a little nervous about her quick reduction in water intake so I'll be keeping an eye on it.

I'm also concerned about what's meant by stress. The internist said that if we're in a period of stress I'm to stop giving her the Vetoryl. He mentioned extreme pain (she's had a neck issue in the past) and anesthesia. She and I compete together so I'm concerned that there might be stress involved in that. She's normally a really solid dog but the competition days have to be a bit stressful. Also, we're about to bring a new puppy into the family. I'm concerned.

The flax hulls sound so healthy I'm taking them too!

Kathy

Harley PoMMom

06-10-2010, 03:45 PM

Were you supplied with prednisone? This is to be given to your pup in case of an emergency situation.

Harley PoMMom

06-10-2010, 04:22 PM

I guess I should clarify the prednisone. Some vets/IMS do not think that when treating with Vetoryl/Trilostane that giving the pet's owner the emergency doses of prednisone is necessary because of the short half-life that it has in the dog's system.

A small percentage of dogs may develop corticosteroid withdrawal syndrome within 10 days of starting treatment. This phenomenon results from acute withdrawal of circulating glucocorticoids; clinical signs include weakness, lethargy, anorexia, and weight loss. These clinical signs should be differentiated from an early hypoadrenocortical crisis by measurement of serum electrolyte concentrations and performance of an ACTH stimulation test. Corticosteroid withdrawal syndrome should respond to cessation of Vetroyl Capsules (duration of discontinuation based on the severity of the clinical signs) and restarting at a lower dose.
http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf

Now, if more adverse reactions occur; an unexpected decrease in appetite, vomiting, diarrhea, or lethargy then the Vetoryl is stopped and this is when the prednisone can be given until one can get their dog to an Emergency Clinic or their vet/IMS to be seen ASAP.

My boy Harley had the UTK full adrenal panel done also. All of his hormones are also elevated but particularly his estradiol, this one is very elevated in him. Did you get a copy of the treatment option sheet that came with your Univ. of Tenn. results?

When logging in...make sure to check the remember me box...I've had so many posts go flying in cyber-space! :):eek:

I'm elated that you have an IMS that you trust and are happy with...Good job!

Love and hugs,
Lori

ktzndgs

06-10-2010, 05:53 PM

I'll ask my vet about the prednisone. He said he's got her on a very low dose so we should probably be ok.

I did click remember me so I must have done something that obliterated that lost message.

Kathy

zoesmom

06-10-2010, 11:37 PM

Hi and welcome Kathy and "insert your doggy's name here" :p

Yes, that is a conservative dose of trilo for a 97 pound dog. Just a little over 1 mg/lb. But since she's responded with a drop in drinking on just one pill, do not let your guard down. My girl Zoe was not quite as big as your girl - maybe 80 lbs or so when she started on trilo. And she was started on a rather high dose (by today's revised protocols, anyway). Right away (day 3) she got sick. We had to stop, wait a few days and restart at a lower dose - several times - before we got her down to a dose she could tolerate (45 mg once a day). Now that dose was extra-low and not nearly enough to control her cortisol. But by easing her dose back up slowly, she finally got back up to 120 mg (we dragged the increases out over a couple months) and she did fine after that.

Sometimes the bigger dogs seem to be more sensitive to it so just keep a very close eye on her in the coming days. The fact that your girl had such a swift response with the drinking might mean she's also sensitive to trilo. And yes, I agree completely with Lori - you should ask for some pred right away and should always keep it on hand when treating cushings. Most don't need it, but better safe than sorry. Some vets don't hand it out as freely with trilostane, but I'd insist. I ended up using it on Zoe a couple times. Just let your vet know that you understand the circumstances when its use would be warranted. We have lots of good sources in our "Info and Resource" section and you can never read enough. Keep us updated on how "insert your doggy's name here" :D:D is doing. Sue

ktzndgs

06-11-2010, 12:34 AM

Sorry! She's Macy. My very sweet girl Macy.

We have had one change. Soggy poop & gas. :( It's not horrible but she was a bit uncomfortable earlier. Since she's an ibd dog I don't know if it's the ibd or the meds. She was sort of leaning in that direction before the introduction of the flax hulls and med but now it's official. I suspect the flax hulls. I also don't know what to do about it. I gave her some very overboiled rice for dinner with boiled chicken breast (boneless, skinless). It's one of the tricks those of us w/ibd dogs pull out in a pinch but I'm worried that I need to do more soon.

I called my regular vet who is off on Thursday. Left him a message but will also call the internist in the morning. I don't think the rice will fix the problem this time. Without the Cushing's I'd give her Flagyl but I'm afraid to mess around given the Vetoryl.

I appreciate you all being there. It's a comfort to be able to speak to someone.

Kathy

AlisonandMia

06-11-2010, 12:49 AM

Sorry to hear that Macy seems to having a flare up of her IBD.

It is very possible that the high cortisol of the Cushing's was "treating" the inflammation of the IBD and therefore keeping it under control. The reduction in water consumption you are seeing really suggests very strongly that her cortisol level has indeed dropped and so this could be why the IBD is flaring now - the timing would be just right for that, I think. If I was in your situation I'd probably stop the Vetoryl for the time being and let her cortisol rise - particularly in view of what your IMS advised about stopping it in the event of illness. A normal (non-Cushing's) dog's adrenals will automatically pump out a bit more cortisol when the body is stressed in some way but a treated Cushing's dog cannot do this because we need to artificially limit cortisol production to treat the disease. So stopping Vetoryl and allowing the cortisol to rise (and/or giving prednisone) can mimic what would happen naturally.

We've seen quite a few dogs on Cushing's meds (both trilostane (Vetoryl) and Lysodren) take Flagyl with no problems - as far as I know there is no drug interaction. But asking your vet first would be wise.

It is possible that her cortisol level will remain suppressed for a while despite stopping the Vetoryl - but it is quite likely it will rise, especially as you have not been treating for very long.

Good luck and keep us posted.

Alison

ktzndgs

06-11-2010, 08:09 PM

I spoke to both vets today. The internist said to stop the vetoryl until she's feeling better and has normal stool. I'm to call him Monday morning and report her condition then. He also wanted my vet to treat Macy for an IBD flare since that seems to be what's going on. The internist approved the flagyl and my regular vet prescribed it so she's had her first dose. I hope this does the trick as I'm anxious to get her back on the meds and get this thing under control. They said the effect of the vetoryl should last for 3 days so she shouldn't start drinking too much water again right away. Good news!

Thanks for you help!

Kathy

Harley PoMMom

06-11-2010, 08:41 PM

Hi Kathy,

I hope the flagyl gets Macy feeling better real soon. If it does seem like it is the lignans making her IBD flare up you may want to ask your IMS to get in touch with Dr. Oliver. Dr. Oliver heads the lab at the Univ. of Tenn. He usually responds very quickly via email. Maybe between Dr. Oliver and your IMS they can come up with a treatment plan that excludes the lignans...Just a thought.

Dr. Oliver's email address: joliver@utk.edu

Love and hugs,
Lori

ktzndgs

06-14-2010, 08:19 PM

I just wanted to let folks know that, because Macy does not generally experience symptoms of IBD that go beyond runny stool to diarrhea he's given her clearance to return to Vetoryl. She's taking flagyl and the internist is reviewing the dose to see if he wants to increase it. If she experiences a serious IBD flare then I'll have to stop the vetoryl. When those flare take place she gets very sick and her stress level goes up noticeably.

Thanks for listening.

Kathy

Franklin'sMum

06-14-2010, 09:05 PM

Hi Kathy and Macy,

Just wanted to pop by and welcome you both, and also to let you know that loose stools can be a sign that cortisol has lowered possibly a little too much with the Vetoryl. It's actually one of the signs to watch out for. You'll find more info about that and other signs in the Helpful Resources section.
Hopefully someone will insert a link to that (sorry, I'm a bit tech-challenged).

Jane, Franklin and Bailey xxx

ktzndgs

06-15-2010, 08:55 PM

Macy (my Newf) was just recently diagnosed with Cushing's. After just 3 days on meds we had to stop the Vetoryl because she was in an IBD flare. We restarted the meds today and hope all will go well. Next week we'll have her first follow-up acth stimulation test to see if the dose needs to be tweeked.

Here's my question.....
Macy and I like to compete in canine freestyle and we have a competition in about 10 days. At this particular competition we don't go on until later in the day. I'm trying to decide if this situation is one that might be considered too stressful or alternatively too exciting for her. Should we go later in the day so we can get there, compete and leave? Should we go, settle in and hopefully relax? She would normally end up spending a lot of the day in her crate. Should we stay home until she's settled on a dose?

I'd like to hear from others who have competed with their Cushing's dogs. Should I wait until she's settled on a dose to enter a competition?

Also, can anyone explain to me what happens in a Cushing's dog when they experience stress? So far I don't understand that part. I understand stress brings on the fight or flight reaction. Normally a body would react by pumping out cortisol to do what? Increase the heart rate? Since we artificially suppress cortisol the body gets no increased ccortisol during fight or flight so then what happens?

Sorry but I'm just not getting that!

Thanks!
Kathy

Moderator's Note: Kathy, I have merged your new thread into Macy's original thread. We normally like to keep all posts on a pup in a single thread as it makes it easier for other members to refer back to the pup's history when necessary. If you would like the title of the thread modified to include your questions about competition, please feel free to PM me, John, or Lori, or one of the administrators & we will be happy to do that for you.

Debbie

Roxee's Dad

06-15-2010, 09:15 PM

Hi Kathy,
Just have time for a quick reply.

Seems some of our cush pups have problems with ligaments especially in the knee area. Mine had ruptured her ACL which required surgery to repair and about 6 weeks of no playing. I know of a few others.

Cortisol...think of it as an adrenalin rush. But ongoing 24/7 without relief.

StarDeb55

06-15-2010, 09:58 PM

Kathy, my first Cushpup, Barkley, was one of the other pups who suffered a ruptured ACL that had to be repaired twice. He was simply running after a toy that I had thrown into the kitchen for him to chase. The pre-op bloodwork prior to the ACL repair showed a severely elevated alk phos which is what led us down the path to a Cushing's diagnosis. Counting Barkley, John's Roxee, I believe there are at least 3 other members whose pups have blown ACLs. IMO, if Macy has lot any muscle mass, her ligaments have probably been affected, too, & I think it might be a risk putting her into competition.

Debbie

Harley PoMMom

06-16-2010, 01:44 PM

Hi Kathy,

This quote is from Dr. Edward C. Feldman who is a renown Cushing's expert:
Dogs receiving o.p'-DDD and undergoing stress (illness, trauma, elective surgery) should be treated with glucocorticoids. The adequately treated dog with PDH has sufficient adrenal reserve for day-to-day living but not enough to handle major stress.

Although he is talking about Lysodren in this quote I do believe the same would be true with a pup being treated and controlled with Trilostane/Vetoryl because the adrenal pathway is being blocked and the pup can not get the extra cortisol that is needed at the time of stress/illness..etc.

Another important factor to consider is that excessive cortisol is harmful to our pups, especially over a period of time. Excessive cortisol or Cushing's Disease can have a major impact on our pups internally in a damaging way; it can cause high blood pressure, it makes the liver work harder and thus the liver becomes larger, it weakens their muscles, it suppresses their immune system, and too much cortisol can cause the bones to lose calcium making the bones smaller and weaker...the list goes on. :(

I believe the best we can do is try to get our pups cortisol under control. And as far as exercise, I believe, one knows their pups limitations and would/should not exceed them. My boy Harley loves his frisbee but I know he can not jump up for it and even now I'm hestitate to roll it on the ground, so Harley just walks around with the frisbee in his mouth and for right now that is all he is getting...no tosses, no rolls...I'm just letting him have his frisbee but not taking a chance of him hurting himself.

Hope this helps.

Love and hugs,
Lori

zoesmom

06-16-2010, 02:47 PM

Should we stay home until she's settled on a dose?

I'd like to hear from others who have competed with their Cushing's dogs. Should I wait until she's settled on a dose to enter a competition?

Also, can anyone explain to me what happens in a Cushing's dog when they experience stress?.... Since we artificially suppress cortisol the body gets no increased cortisol during fight or flight so then what happens?

Sorry but I'm just not getting that!

Thanks!
Kathy

We did have somebody or two on the previous cushings forum whose dog(s) competed - in agility, I think - and she asked the same questions. (That forum now defunct so can't link you to it.) Anyway, a cush dog whose cortisol is in the therapeutic range still produces cortisol - just not an excess amount. I would think, however, that during the initial stages of tx, you'd want to hold off on competitions, until she is stabilized and until you know exactly what her ACTH#'s are. If, for instance, she were to drop to the LOW end of the range (the range being about 1 - 5 ug/dl for lyodren dogs and about 1.5 - 5.5 for trilo dogs), then she may have problems during the stressful times of competition. Personally, if you want to resume the competitions, I would think letting her #'s run at the upper end of those ranges would be better. The trick is to get the dose so that you get the results you are aiming for - not always an easy thing to do!!! Some thiink that for Trilo dogs, a post # as high as 7.2 or so is ok. (And as high as 8 or 9, if there is no return of symptoms.) I found this to be true for my Zoe - she did best around 5 - 7 post. Also another thing to look at when getting the monitoring ACTH tests would be the spread between the pre- and post #'s. You'd want to see some difference in those two, as proof that she can pump out the extra amount needed during a competition. For instance, some dogs will get almost 'flat' results - like with a pre of 3. and a post of 3.1 or 3.2 - which might indicate that their reserve is less. I think the only way you will know for sure is to get her stabilized, wait a few weeks and recheck to see if her numbers are holding, and then if they are not too low and have a fair spread, then she'd probably be good to go. You might also talk to your vet about giving her a pred right before she competes (Wonder if that would be considered cheating . . . like athletes on steroids!!:eek::p:p)

Again, that doesn't address the possible side effects of cushings that could crop up - weaker muscles leading to torn ligaments and such. BUT IMO, if it's something the dog loves doing, and has been conditioned to do, and they are not limited by age or any other conditions, then why take that away from them. Maybe you could do some trial runs, once she's settled into a specific dose and see how she does. If she loses any ground during the beginning of tx, you'd definitely want to get her muscles built back up first. Over time, of course, that may become more of an issue. 'Cause even when they are well-controlled on meds, they tend to lose a little strength over time - then again, that may be just due to aging. You know Macy best so I'd say, just proceed cautiously at first and see how she does. Sue

ktzndgs

06-16-2010, 04:14 PM

Thanks. I'm going to take her in next Tuesday for the first test she will have had since restarting the medication. I'll ask the vet then about this subject. They told me not to stop training with her. We're only "on" for about 2 minutes and the type of freestyle we're doing is fairly low-key by our standards. What I'm concerned about is her reaction to me being nervous, to being crated too long and to the excitement. She did a full run thru and then some last Sunday but she was not taking medication at that time. Maybe I'll discuss the idea of taking her off her meds the day of the competition with the vet. I'll let you all know what he says.

Kathy

zoesmom

06-16-2010, 04:57 PM

.What I'm concerned about is her reaction to me being nervous, to being crated too long and to the excitement. She did a full run thru and then some last Sunday but she was not taking medication at that time. Maybe I'll discuss the idea of taking her off her meds the day of the competition with the vet. I'll let you all know what he says.

Kathy

Does she seem to get stressed or overly excited in those situations, normally? If she's really used to it, may not be enough additional stress to be a concern. Your idea of just skipping a pill on competition days is also a good one. I skipped Zoe's doses any number of times - for various reasons - and missing a pill or two every now and then, I don't think is a really big deal. It might give her just that extra oooomph that she'd need. And then right back on the meds the next day - probably wouldn't cause any significant rise in that short of a time. Sue

ktzndgs

06-26-2010, 11:25 PM

A few folks wrote to mention the potential for ACL tears with Cushing's. I wanted you to know I did take note of what you said and I realized that nothing is worth an acl tear. I pulled her from the competition or any demo's for now. Thanks!! I'll be restarting training but all very low key for now. Engage the mind now and slowly get the body involved again.

Kathy

ktzndgs

07-25-2010, 10:56 PM

My Newf Macy was diagnosed with PDH in late May and started taking vetoryl in early June. She was put on 120mg once a day at first. The dose was increased to 180mg once a day plus flax lignans and melatonin. She's also an ibd dog and weighs 95-100 pounds.

Macy sleeps a lot. She wakes up for meals or when I wake her up for walks. After her last dose increase from 120 to 180mg we did an ACTH stim test about 12 days after the dose change and it came back with cortisol levels of 2.8 - 4.2 indicating all was now normal but I don't have a normal dog. I have a lethargic dog. How can I tell if she's getting too much medication? This is scaring me.

Kathy

Moderator's Note: Kathy, I have merged latest post about Macy's trilo dosage into Macy's original thread. We prefer to keep all posts on a single pup to one thread as it makes it easier for other members to refer to the pup's history when necessary.

frijole

07-25-2010, 11:03 PM

Kathy - I am glad you found us. Pls tell us exactly what you mean by lethargic. It is possible to get too much trilostane. The reading you gave from the last acth test of 4.2 is helpful. Some dogs need their cortisol levels to be higher. What were her readings when at the lower dose?

Do you have any prednisone on hand to give in case of emergency? It mimics cortisol and would give her relief.

The more you share the better we can help. We have lots of experience here and no doubt others will join in. Kim

apollo6

07-25-2010, 11:11 PM

WELCOME Kathy.
You know your dog best. If he is acting lethargic, you need to contact your vet. Also you may also call Dr. Time Allen with Dechra-Vetoryl the company that produces the product at 1-913-327-0015 to voice your concerns. Don't ignore. I just started my 11 year old , 10 pound Dachie, on 10 mg.
Hang in there we are here for support.

StarDeb55

07-25-2010, 11:11 PM

Kathy, I tend to think this may be the melatonin, rather than the trilo. How much melatonin is Macy getting daily? Melatonin will make pups a bit sleepy.

Debbie

ktzndgs

07-26-2010, 12:02 AM

She's getting 3mg of melatonin once a day and I've started giving it just before bed because I did notice that if given with dinner she was zonked all evening.

Kathy

ktzndgs

07-26-2010, 12:04 AM

Sorry. I'll get it right eventually. :/

Kathy

ktzndgs

07-26-2010, 12:28 AM

I do have pred in the house in case of emergency.

Her numbers on the 120mg dose were 3.8 and 12.2.

Lethargic - sleeping all day long. She gets up when asked but if not asked to react she just sleeps. I'm going to try to inject some excitement into her life tomorrow by taking her to Petsmart. Maybe I'm just boring her. ?? She's accustomed to a reasonably high activity level but with the heat and her being sick there's not much going on.

Kathy

StarDeb55

07-26-2010, 12:31 AM

Kathy, with those kind of numbers, IMO, it's not the trilo. Macy is not within suggested therapeutic range on her cortisol as of yet. I really think it's the melatonin. You might try stopping the melatonin completely for a couple of days & see if she perks up.

Debbie

Sorry, I forgot that you had posted new numbers after increasing the trilo dose. Those new numbers are absolutely great. I'm still betting it's the melatonin.

Squirt's Mom

07-26-2010, 12:46 PM

Hi Kathy,

Two things that are said around here:

1- You know your dog better than anyone else. TRUST YOUR GUT!
and
2 - Treat the dog, not the numbers.

If you feel something is not right with Macy, see your vet and discuss what you are seeing. It could be the Trilo, the melatonin, or something completely unrelated to the Cushing's. I know for me, ever since Squirt was diagnosed I tend to blame everything on the condition when it seldom has been the problem. :rolleyes:;)

I also know that melatonin can make you feel pretty drowsy even the next day. I have taken it to help me sleep...just one 3mg and I am out. I don't know how Squirt handles twice that amount per day at 15lbs and still function, but she does! At times she is sleepier than others and at one point I cut it way down but her numbers came back higher when I did that so back to the regular dose.

As has already been said, some pups just do better when those numbers are running a little higher than protocol calls for. Macy may be one of those babies who simply needs a bit more cortisol in their system to function properly. We have had several babies here who fit this category so it isn't unheard of.

Is this the only change you have observed? No other new behaviors or reappearance of old ones?

Keep your chin up!
Hugs,
Leslie and the girls - always

ktzndgs

07-27-2010, 12:40 AM

There haven't been any other symptoms but the replies to this have me thinking I need to run a bit of a trial. I forgot to give her the melatonin last night and also skipped her vetoryl this morning. (I'd rather skip it than give too much.) Anyway, Mondays we get together with our training group and I had a live dog tonight! Not 100% but about 65% which is more than I've had lately. Tonight I'll give the melatonin and tomorrow morning she'll get the 120mg of Vetoryl so I can see what I have tomorrow evening.

Last night at about 9pm I tried to kiss my snoozing-on-the-sofa Newf and she grumbled at me! She grumbles at the puppy but never me! She was too sleepy to know the diff!

Treat the dog, not the numbers. I agree. My internist is out of town this week so the tech said to give her the prescribed dose. I told him I can't cause it's scaring me and I'll give her the 120mg per day and talk to the vet when he returns. He was fine with that. (I think they've got customer service down to a "t"!)

Kathy

StarDeb55

07-27-2010, 02:04 AM

Kathy, I agree that one of the 2 appears to be the culprit for Macy's lethargy. Trilo has a half life in the body of approximately 12 hours, so without an AM dose, Macy's cortisol would have started climbing this evening. She may be one of the pups who does a little better with her cortisol running a bit on the high side. I would think the melatonin effects would have subsided by tonight since it would be nearly 24 hours since she had her last dose. I will be very curious to see what your IMS says.

Debbie

ktzndgs

08-03-2010, 06:34 PM

The IMS agreed with me lowering the dose for a period to see how she does. He said to keep her on the 120mg once a day for 7-10 days and then report back. She's been on the lower dose for almost a week now and seems better.

After seeing that the trilo seemed to be responsible for her sleepiness I put her back on melatonin but only 1/2 of a 3mg tablet per dose. I'm gong ot continue that a bit longer and will then in crease it to a full 3 mg.

Kathy

ktzndgs

08-06-2010, 02:38 PM

Kathy here with Macy the Newf. Once again I was posting a reply when it disappeared. I must be clicking on something. Sorry if this is a repeat.

We're doing a 10 day trial of having Macy on 120mg/day of Vetoryl instead of the 180mg/day the vet had prescribed. On the higher dose she was sleeping all of the time. On this new dose she's jumped up on the bed at night several nights and runs to me when I call her in the yard. I'll report back in with the IMS on Monday and plan to tell him I'd prefer to leave her on the lower dose for a few months before rechecking her numbers. I'd like to see if the numbers drop into the normal range over time.

I've started training with Macy again and we'll be in a competition in September. I'm a bit uncomfortable about how I'll handle that but I'm guessing I'll just take her off the Vetoryl for the two days of the competition. Would 1/2 of her normal dose be ok? I'll ask her IMS.

I notice Melissa is dosing twice a day. Would there be any benefit to splitting the dose between morning and night for Macy to keep a steady level? Does Vetoryl last for 12 hours or 24?

BTW I had also taken Macy off melatonin (just in case) but then reintroduced 1/2 of a tablet per night. Tomorrow she goes back on 1 tablet each night.

Kathy

Administrative Note: This reply was originally posted on the "Checking In" thread, but it has been relocated here so as to be added to Kathy's ongoing thread about Macy.

labblab

08-07-2010, 09:35 PM

I notice Melissa is dosing twice a day. Would there be any benefit to splitting the dose between morning and night for Macy to keep a steady level? Does Vetoryl last for 12 hours or 24?

Hi Kathy,

Every dog metabolizes trilostane (Vetoryl) within its own individual time frame. But generally, the effectiveness has waned after approx. 12 hours. For this reason, there have been several research studies over the years aimed at determining whether or not twice daily dosing would represent an optimal dosing schedule. However, from both a practical and clinical standpoint, the manufacturers of Vetoryl (and also UC Davis, as far as we know) still recommend starting off first with once daily dosing, and only shifting to twice daily dosing under certain circumstances. One such situation would be if the dog's symptoms resolve in the early part of the day and the morning ACTH test results are in the desired therapeutic range, but symptoms start rebounding again later in the afternoon or evening. We have also been told that diabetic dogs may also benefit from twice daily dosing, so as to keep their endocrine systems more evenly regulated throughout an entire 24-hour time period. We also have a few members here whose dogs have been shifted to twice daily dosing because their cortisol levels just couldn't be adequately controlled with a single dose.

However, as long as a dog DOES stabilize satisfactorily on a once daily dose (which apparently the majority do), the manufacturers still recommend that as the preferable regimen. For one thing, it is simply easier for the owner to give one dose a day on a consistent basis (especially since trilostane is metabolized most efficiently when given with food). Also, a veterinary endocrinologist who is a member here has warned us that dogs who are dosed twice daily run a greater risk of oversuppression from the medication, and thus must be monitored even more closely than dogs being dosed once daily.

I'm really glad to hear that Macy seems to be rallying again since you lowered her trilostane dose. And if she continues to do well with both her ACTH testing and also her symptom resolution, then I'm guessing there wouldn't be any particular benefit to splitting up her dose.

Marianne

ktzndgs

09-07-2010, 10:32 AM

I'm getting very worried about Macy and the Vetoryl.

Macy is being treated by an Internal Medicine Specialist. She was diagnosed with Cushings in late May/early June and started on 120mg/day of Vetoryl. She weighed about 95-100 pounds at that time. Her follow-up ACTH Stim test showed we weren't quite where we needed to be so her dose (which was considered to be a low dose) was increased to 180mg/day of Vetoryl. On that dose she did nothing but sleep and I would have to shake her to get her up. I spoke to the vet about it and he agreed to reduce the dose back to 120mg/day again.

She was on that dose for awhile and still seemed to be sleepy though not as much. She had to go off the dose for about 10 days due to a neck problem but was put back on the Vetoryl a week ago. This time the vet and I agreed to try giving 60mg in the morning and 60mg at night instead of 120mg all at once hoping she'd be less lethargic. That hasn't worked. She's only slightly better and now I wonder if I should go back to the IMS to see about going off Vetoryl completely and going on Lysodren instead. In talking to friends we train with last night we were discussing how to best describe my girl to the vet and we came up with the word "depressed". She's lost about 5 pounds in spite of being very hungry, her coat still isn't filling back in and we're still dealing with muscle tremors. On the other hand she does jump on the bed again and does not drink excessively. We had a brief period when she went on the current dose when she was energetic on walks but that passed and she's lagging again.

I'm not sure what my question is or what to do next. I'm getting frightened about what I see going on. It's as though she doesn't have the strength to keep up. She responds to things that excite her but only momentarily before she sinks back down. I found it of interest that earlier into this (maybe early July) she went off the Vetoryl for about 3 days and started drinking too much water by the 3rd day. After being off Vetoryl for almost 10 days the last time she didn't start drinking too much water until about day 8. Is the vetoryl not clearing her system?

Can anyone help me make sense of this?

Thanks.
Kathy

StarDeb55

09-07-2010, 10:43 AM

Kathy, I'm not a trilo user, but the one thing I do want to point out since it appears you are considering switching to lysodren, there will have to be a 30 day washout period where Macy is not on either med before making the switch.

Debbie

labblab

09-07-2010, 11:19 AM

Kathy, are you still giving Macy the melatonin? From an earlier reply, it looks like you had concluded that the melatonin wasn't causing Macy's sleepiness -- but I'm not sure for how long a time you actually suspended the melatonin in order to test it out (it looks like maybe just for a day or so?). If you are still giving her melatonin, I believe I'd try stopping it for at least a week in order to see if you see any improvement. I'd definitely give that a try before stopping the trilo and switching to Lysodren.

Marianne

zoesmom

09-07-2010, 11:39 AM

Hi Kathy -

I just quickly glanced back thru your thread again and have a couple quick questions. First, sounds like Macy had her last ACTH in July? I'm sort of unclear on the timing of the dose changes and the acth tests, if you could clarify with exact dates/doses/test results.

Then I also noticed a couple of other things. You mentioned that she growled at you one night. This kind of unexpected aggression can often be a presenting symptom of hypothyroidism. Have her levels been checked lately? I would definitely do that. Then you mentioned that she's pretty hungry but losing weight. Diabetes could be another possibility and has many symptoms similar to cushings.

She's apparently had only a partial resolution of cush symptoms? The depression does sound like the cortisol withdrawal syndrome. Don't know if it can be more pronounced in large dogs but Zo had it for awhile in the beginning of tx. Really worrisome but then it finally subsided. They miss that "feel good" high cortisol level, but still aren't necessarily too low on cortisol. Depression is how I'd describe it, too. Still, I'd think maybe another acth would be in order. Looks like her last one was close to the middle of the recommended range , but regardless, that may not be the perfect range for Macy. Zoe seemed to act and do her best between 5 and 7 ug/dl. And even alright when between 7 and 9 - but over 9 or 10, things started to go downhill.

But just as a matter of ruling out all possible explanations, I'd begin with another ACTH. Since you said she was off trilo for 8 days and her drinking didn't increase - and that combined with the lethargy - this might mean she's in a low or non-stimulatory situation. Then again, with her ongoing appetite and ongoing hair/coat issues, it could be that her numbers have gone back up again and she sn't being well controlled again. Usually if you switch a dog to twice daily dosing, you would need to increase their total dose slightly. Like a dog on 120 mg once a day, might need 70 or 75 mg twice a day. There can be so much trial and error and tweaking involved with these cush pups and their doses and since Macy hasn't been at this all that long, I would not despair yet. With Zoe, it took at least a half year to get her settled. And then even at that, there were many times when she had unexpected rises or dips in her cortisol that required dose changes.

So take it one step at a time (you might not be able to get thyroid and blood glucose tests done at the same time as the acth if one or both requires fasting and I think they do????). I forget - why were you giving her the melatonin again?? And is this right - she's currently taking 60 mg of trilo twice a day? (Down from 180 sid, and then 120 sid???) And no ACTH has been done since switching her to the 60 + 60? Sue

labblab

09-07-2010, 01:32 PM

Kathy, one more question about the melatonin (if you're still continuing to give it to Macy)...

I'm just wondering whether the combination of Vetoryl AND the melatonin was specifically recommended to you by Dr. Oliver at UTK? The reason why I ask is because of a recent phone conversation with Dr. Oliver that another member has reported to us. Her dog was initially being given the combination of melatonin and lignans to treat elevated sex hormones. But her dog has now started on trilostane due to elevated cortisol, and the member's report to us is that Dr. Oliver verbally advised her to discontinue the melatonin after having started the trilostane. The reasons for the discontinuation were not entirely clear -- whether the two together are not a good combination on a consistent basis, or whether the melatonin simply isn't thought to be helpful in the face of trilostane's inevitable increase of estradiol and certain other intermediate hormones.

Macy's sleepiness has reminded me of this phone conversation with Dr. O. I know that UTK recommends the combination of Lysodren with melatonin/lignans when treating elevations in both cortisol and intermediates. But I'm just not so sure about combining trilostane with melatonin. So I thought I'd go ahead and mention this to you to see what UTK had recommended to you in that regard...

Marianne

ktzndgs

09-07-2010, 04:03 PM

Thank you ALL for replying to my email!! I can't tell you how upset I've been and how comforting it is to have knowledgable folks to talk to about this.

Marianne, Macy is on Vetoryl, Lygnans *and* melatonin. Her cortisol and sex hormones were elevated per her first test sent off to ?U. of Tenn? (is that right?). I stopped giving her the melatonin night before last and will hold off on giving any more for another two weeks.

I'm cleaning like mad for houseguests with a baby to arrive (hairy place I live in!) but will try to answer all questions asked asap. One thing though, my vet said that since we've decided to divide the dose between morning and night there's no point in doing an acth because in his opinion the numbers wouldn't tell us anything. That doesn't make sense to me so I plan to discuss that with my regular vet. I was going to have him do the ACTH form now on anyway.

Thank you all sooo much! Thank you for being there and for listening and for helping! I'll be in touch soon.

Kathy

labblab

09-07-2010, 04:38 PM

You have my total sympathy as far as the housecleaning!! With two labrador retrievers having free run of my house -- there is dog hair EVERYWHERE at all times (even in the freezer, I'm afraid :o). All of my friends know they're not allowed to stop by without calling first, to at least give me the chance to sweep up the biggest and most obvious hairballs...

As far as discontinuing ACTH testing since you're splitting the dose, that DEFINITELY does not make any sense to me, either :confused:. According to everything we've been told here, you still go ahead and perform monitoring ACTH tests at the same time periods and at the same intervals. As I wrote in an earlier reply, if anything, we've been told that you need to monitor the cortisol results even MORE vigilantly if the dosing shifts to twice-daily because there is a greater risk of dogs becoming overly suppressed. So if you're now about one week into the new dosing pattern, I'm thinking that you should be planning for another ACTH at around the fourteen-day mark.

As for the melatonin, I did see your original UTK results so I knew that Macy had elevated intermediates as well as somewhat elevated cortisol. What I'm still not sure about is whether the folks at Tennessee were the ones to suggest combining Vetoryl with the melatonin, or whether it was your vet who made that decision. I know that UTK usually includes a checklist of various treatment options when they give you the test results, and that trilostane and melatonin are both included separately on the checklist, as are several other options. But sometimes the recommendations are an either/or situation -- and that's what I was wondering with Macy: Whether UTK actually recommended that both the melatonin and trilostane be given together or whether your own vet was the one to decide that. When you have the chance, any additional info you can give us about that would be a help.

One slightly complicating factor is that you've switched the trilostane dosing pattern and also discontinued the melatonin at about the same time. So if you see changes in Macy, it may be harder to know what's responsible -- the dosing change or stopping the melatonin. Often it makes it easier to figure out what's causing a problem if you only change one thing at a time. But even if you're feeling committed to sticking with the twice-daily dose right now, I still think it's worth it to go ahead and also take a break from the melatonin as well since Macy has been doing so poorly. I know you're really anxious to see some improvement, no matter what the cause!

Marianne

ktzndgs

09-07-2010, 04:51 PM

I have to dig out the test results but the vet is the one who told me to give Macy melatonin. I'll look at the papers from the Univ. and let you know if it says anything there.

Kathy

labblab

09-07-2010, 05:05 PM

Kathy, when you have the time, that will be great if you'll check as to what UTK recommended at the time Macy was tested. Because it will be an education for me as well as you -- I'm really interested in knowing whether UTK ever recommends giving melatonin alongside trilostane (or whether the two drugs would just be largely working at cross-purposes in terms of effects on intermediate hormones). And if anybody else out there knows the answer, please chime in!

Marianne

Rebelsmom

09-07-2010, 05:14 PM

I have to dig out the test results but the vet is the one who told me to give Macy melatonin. I'll look at the papers from the Univ. and let you know if it says anything there.

Kathy

I have just recently switched my pup Rebel to twice dosing also. We are not stopping the ACTH testing, but when it is time for him to have it he would get the full dose in the morning and then be tested. That's what my vet is doing.

Melissa

zoesmom

09-07-2010, 06:44 PM

Kathy, Marianne and Melissa -

Zoe was on trilostane, as you probably know, and later on, I put her on melatonin (myself) because of her seizures, as an addition to her AED drug sodium bromide (melatonin is sometimes used for epileptic dogs, in this manner, as per the Guardian Angel website).

At one time, I corresponded with Dr. O. at UTK and he didn't discourage me from keeping her on the melatonin (even suggested upping her dose to 3 mg bid.) But I explained why she was on it (the seizures more than trilo's effect on the secondary hormones, but that I thought it couldn't hurt with the cushings and trilostane possibly affecting those hormones.) This was in '06 or '07. And she stayed on that combo until the very end with no obvious ill effects. Whether he would recommend that now, I do not know. The melatonin didn't seem to make her too drowsy, either. She varied from about 77-85 lbs.

I do agree with Marianne, that an ACTH is essential to know how well the twice a day dosing is working. But Melissa, I think it's odd that your vet would want the full dose given in the a.m. - just on test day. Seems to me like the best course would be to test when they are getting the trilostane like the always do - day in and day out - even if that's every 12 hours. That must make for some sort of consistent level in their blood over time. It seems to me like doing it your vet's way would produce lower than normal test results - from reverting back to the higher dose for the test. A dog on bid dosing surely has some overlap effect with the two doses / 24 hour period. I'm not making myself very clear, :confused:but what I'm trying to say is they probably are getting a more even effect - at any given time - during that 24 hours.

In fact, wasn't there some thought a while back about testing a dog on bid dosing like right before their evening dose? Or something similar??? Was it from UC Davis, perhaps? Maybe Marianne will remember? Zoe was on bid dosing for most of her trilo days, and we always did the regular dose (half the daily amt.) in the a.m. and then tested at 4 - 6 hours after that. I'm sure there must have been some carryover from her previous evening dose, even doing it that way. I know they say it starts to decrease in their systems after 8 hours. But from observing Zoe, I personally think that there is some lingering, albeit ever-dwindling, effect for as much as 2 - 3 days or longer. Wonder if Dechra has any guidelines on this? Sue

Rebelsmom

09-08-2010, 12:16 PM

addy

09-08-2010, 02:39 PM

Not sure if this will help anyone but I spent at least six weeks getting my pup adjusted to 3mgs melatonin twice a day. I started with 1mg at night and my Zoe got zonked from it in the beginning and was hung over the next day. I would wait a week or so and then add another 1mg. Finally we were up to 3 mgs at night and we stayed on that dose for at least a few weeks.

When it seemed she was getting used to having the nightly 3mgs, I started on the morning dose, again just 1mg. She tolerated that really well, so bumped to 2mgs after a few days. I just added that last morning mg. Getting adjusted to the morning dose went faster.

After each bump, she was tired and spacey for a few days but then adjusted to it. I know I went really slowly but it worked out well for my Zoe to do it that way. I just bought human melatonin from Walgreens. Do not get extended release or time release.

Addy

labblab

09-08-2010, 02:53 PM

At one time, I corresponded with Dr. O. at UTK and he didn't discourage me from keeping her on the melatonin (even suggested upping her dose to 3 mg bid.) But I explained why she was on it (the seizures more than trilo's effect on the secondary hormones, but that I thought it couldn't hurt with the cushings and trilostane possibly affecting those hormones.) This was in '06 or '07. And she stayed on that combo until the very end with no obvious ill effects. Whether he would recommend that now, I do not know. The melatonin didn't seem to make her too drowsy, either. She varied from about 77-85 lbs.

Sue, thanks so much for your input about this. I am betting that your train of thought is accurate -- that there is probably nothing dangerous about the combination of trilostane and melatonin, but Dr. O and the UTK crew may not recommend it as a treatment combo because of the competing effects on the intermediates. If that is true, and if the melatonin is what is making Macy so sleepy, then it seems to me that she'd probably be better off just permanently discontinuing the melatonin altogether.

Also, I agree that I've always thought that the usual recommendation for a dog being dosed twice-daily to be given its ACTH test 4-6 hours after its usual partial morning dose (not after a full dose on testing day). That's what our IMS always did with Barkis, too. I don't believe the Dechra Product Insert advises anything different, but I'll double-check later on.

Marianne

ktzndgs

09-10-2010, 02:28 PM

Thank you! I didn't know that. We're going to stay with the Vetoryl for now.

Kathy

ktzndgs

09-10-2010, 03:15 PM

Sue, you're right. Macy's last ACTH was in July. We started her on 120mg/day in late May/early June, did a follow-up acth stim in about 10 days and the vet had me increase her dose to180mg/day. The follow up ACTH stim test done after that in July showed her Cushing's well controlled but I had a dog who was way too lethargic so the vet said to reduce the meds back to 120mg once a day and do a follow-up acth stim test late August. Before the August test Macy developed problems with her neck and was taken off Vetoryl for over a week so the last test was postponed but I kept the appt with the IMS. At that appointment we decided to divide her daily vetoryl dose and give half in the morning and half at night because I was still seeing a lethargic dog.

She was on the new dose method for almost a week when I stopped giving her melatonin. I was almost ready to say that taking the melatonin out of the mix was helping but then remembered this morning that I started her back on flagyl 3 days ago for soft stool/diarrhea (she has IBD). On day one of flagyl she seemed more alert and yesterday she led me on our walk. She hasn't done that in a long time.

We saw a neurologist this morning for her neck problems and he's now suspicious about whether there might be something else going on causing her lethargy and neck problem so he took a whole bunch of blood and has ordered tests to see what he comes up with.

Back to the vetoryl and melatonin. I don't know what treatment Dr. Oliver recommended because the IMS did not give me that info. Dr. O's note does say to "consider options 1-5, or item 8, on the treatment option sheet attached." But the IMS did not give me the treatment option sheet. Does anyone have one and can you let me know what it says?

Kathy

StarDeb55

09-10-2010, 03:21 PM

Kathy, if you will look under treatment considerations on this link for UTK, I believe you can find what you need.

http://www.vet.utk.edu/diagnostic/endocrinology/index.php

Debboe

lulusmom

09-10-2010, 03:27 PM

See treatment options listed below:

Treatment Option Considerations
Steroid Profiles in the Diagnosis of Atypical Cushing’s Disease
Clinical Endocrinology Service/College of Veterinary Medicine/University of Tennessee
Where positive test results of increased adrenal activity are present, consider the need for:

1) Ultrasound and/or Endogenous ACTH. Procedures to rule out primary adrenal tumor presence.

2) Melatonin. Often used as a first treatment, especially if alopecia is present, since it is cheap, has few side effects and is available in health food stores or via nutrient suppliers on the Internet. Typically, a dose of 3 mg is given q12hrs (BID) for dogs <30 lbs; a dose of 6 mg is given q12hrs (BID) for dogs > 30 lbs. Regular melatonin is usually used rather than rapid release or extended release products. Melatonin has anti-gonadotropic activity (effective for ferret adrenal disease), and it inhibits aromatase enzyme in tissues (decreases androstenedione and testosterone conversion into estradiol) and 21-hydroxylase enzyme (effectively lowers cortisol level). Allow at least 4 months for treatment effects to be effective. Response time is variable between dogs. Monitor treatment effectiveness by improvement in clinical signs, biochemistries or by repeat of steroid profile.

3) Melatonin Implants. Available for dogs and ferrets. (WWW.MELATEK.NET). Sizes are 8, 12 and 18 mg for <25, 25-50 and >50 lb dogs, respectively. Effects last 3-4 months.
NOTE: Melatonin and flax hull product with lignans are used together when estradiol is increased.

4) Lignan. Lignan has phytoestrogenic activity, and competes with estradiol for tissue estrogen receptors, with less biological effect. Lignan also inhibits aromatase enzyme (lowers estradiol) and 3-beta HSD enzyme (lowers cortisol). Use either FLAX HULL (SDG) lignan, or HMR lignan. See LIGNAN at our website under TREATMENT for details. DO NOT USE flax seed oil as the lignan content is very low, and the flax oil can increase triglycerides. SOURCES OF APPROPRIATE PRODUCTS are listed at the website. Lignans are safe, so doses don’t have to be exact. Suggested doses: SDG lignan; one milligram/lb B. Wt./day. HMR lignan; 10-40 mg/day for small to large dogs.

5) Maintenance dose of LysodrenTM. Often useful in combination with melatonin and lignan to help lower sex steroid levels other than estradiol, along with suppressive effect on cortisol level. NOTE: MONITOR CORTISOL LEVELS AS FOR TYPICAL CUSHING’S TREATMENT.

8) Ketoconazole. Cushing’s disease treatment. Effective for increased cortisol and sex steroid levels. Consider 6 to 12 mg/kg, BID along with melatonin and lignan as above. See write-up at our website (and the recent article on ketoconazole treatment at JAVMA, 233:1896, 2008).

ktzndgs

09-10-2010, 11:00 PM

Well, hmm. I don't see anything about Vetoryl in there! I kind of get the impression she could be on melatonin and lignans and that's it.

Kathy

StarDeb55

09-11-2010, 12:16 AM

Kathy, Dr. O will usually not mention trilostane as it is known to elevate some of the intermediate hormones especially 17-OH progesterone, if memory serves. If Macy had 17 OH among her elevated intermediates, this is probably why trilo was not mentioned.

Debbie

labblab

09-11-2010, 09:04 AM

Debbie is correct about Dr. Oliver's research findings re: trilostane's effect on the intermediates -- he tells us that trilostane inevitably increases the following hormones: androstenedione, 17-hydroxyprogesterone, estradiol and progesterone. So just as Debbie says, he is not a fan of recommending trilostane when a dog's testing profile already includes significant pre-existing elevations in these intermediates.

However, there is not a concensus about this issue among vets who are actually out there treating Cushing's -- there is uncertainty as to whether or not elevated intermediates will actually cause any clinical issues for any given dog. If ONLY intermediates are elevated on the UTK test for a symptomatic dog (and the cortisol level is normal), then it can be assumed that the intermediates ARE the source of trouble for that dog (and that's where the melatonin/lignans treatment comes in, along with possibly adding Lysodren at a low dose because Lysodren also has a lowering effect on intermediates as well as cortisol). But if a dog's cortisol is elevated along with some of the intermediates (as is the case with Macy), many vets choose to primarily address the cortisol (using either trilostane or fully loading the dog with Lysodren at a higher dose, or sometimes trying Ketoconazole).

I am not sure which intermediates can be lowered by melatonin, but I believe they include some or all of the intermediates that are elevated by trilostane. So that's why I've been saying that the two drugs work at cross-purposes. And I'm guessing that's why Dr. Oliver wouldn't recommend giving them at the same time.

And this is a long-winded way of saying that, even though Dr. Oliver is not a fan of trilostane for a dog with a testing profile like Macy's, there are vets in clinical practice who choose to prescribe trilostane regardless of the dog's intermediate profile. But the "wild card" in your situation is your vet's decision to also throw in the melatonin along with the trilostane. For most dogs, it probably wouldn't cause any harm, but it probably also wouldn't actually accomplish much -- and in Macy's case it may be making her lethargic.

And last but not least, Macy might be a dog for whom the elevated intermediates DO contribute to her symptoms. If that's the case, Lysodren might end up being the better treatment choice in the long run. But since you've already started with the trilostane, I'd want to give it a fair chance before contemplating stopping it altogether, going through a 30-day washout period, and switching to Lysodren. You've had so many medications changes in such a short amount of time that I'd try to stay the course for a while in order to give Macy a chance to actually stabilize on the trilo.

Marianne

ktzndgs

09-11-2010, 01:49 PM

It sort of sounds as though we might also be able to treat Macy with just melatonin and lignans. Would there be any benefit to me actually calling Dr. Oliver? I worry about going over the head of my IMS but I'd sure like a better idea of my treatment options and whether we're giving her the most appropriate treatment. Will the elevated "intermediaries" (hormones?) go down without the melatonin and lignans?

Kathy

ktzndgs

09-11-2010, 01:54 PM

Ok. I've been rereading your post and see that the trilostane (vetoryl) might actually cause the hormones to go up instead of down so I guess I have my answer. She's got other stuff going on and I'm having to learn so much!

Kathy

Harley PoMMom

09-11-2010, 02:08 PM

The melatonin and lignans alone do not have that much of a lowering effect on elevated cortisol. These are to be used with Lysodren when the intermediates are elevated too.

Trilostane/Vetoryl or Lysodren/Mitotane are usually the Cushing medicines given to lower elevated cortisol in a pup.

StarDeb55

09-11-2010, 02:46 PM

Kathy, the way that both my former IMS & my GP vet explained this to me is that lysodren will control all hormones produced in the adrenal glands. The main reason why you add melatonin + lignans is because of an elevated estradiol. Estradiol can be produced in non-adrenal tissue such as fatty tissue & reproductive tissue, so this is what needs to be controlled with the above 2. Basically, my IMS said that it is "a crapshoot", to use her words, to control estradiol levels. You may be able to, & you may not.

Debbie

ktzndgs

09-14-2010, 01:35 PM

Macy & I went to see my regular vet yesterday and we had a long chat. I wanted someone to oversee all the medications I have for her. She was recently given meloxicam by a neurologist (she has spine problems) which he mentioned was in the same class as deramaxx. Somewhere along the line I read that you can't give deramaxx to a Cushing's dog. I don't know if it's because of a potential interaction with the meds or because of the cortisol level in a Cushing's dog. He said that if I can't give her Deramaxx I can't give her meloxicam either and he's asked me to double check. Is that correct? I'm going to put in a call to my IMS to ask but his assistant will probably call me back and I'm not sure how much clarification I'll get.

Also, I'm starting to see rear end weakness in Macy. Her back legs just don't seem to be strong enough. I know Cushing's can cause that but does that mean what we're doing isn't working?

You might recall the IMS said there was no point in doing an acth stim but my vet decided to have a good look at her levels. He did 3 tests today. One immediately pre-medication, another 3 hours after medication and then they gave her the injection and she stayed with them for an hour and they did the post-med test. He wanted to see how she is before she's got meds on board. I've got to give my vet credit. He's accustomed to using lysodren for Cushing's but he's got an open mind and he's researching.

Thanks!
Kathy

labblab

09-14-2010, 03:09 PM

Hi Kathy,

Yes, unfortunately hind-end weakness can result from uncontrolled or less-than-optimally controlled Cushing's. So if Macy is still exhibiting other Cushing's symptoms as well, this may be an outward indication that her cortisol level has not yet been lowered sufficiently on her current dose of trilostane.

As for issues with Meloxicam and Deramaxx -- as you suspect, the risks from both these drugs are also associated with elevated cortisol. It can be dangerous to give aspirin or any other NSAIDS to untreated (or undertreated) Cushpups. Long-term steroid exposure of any form tends to irritate the upper GI tract and leaves both people and dogs at a greater risk for developing ulcers or GI bleeding. This is true whether the steroid is taken orally (prednisone, for instance), or whether the steroid comes from the high levels of circulating natural cortisol associated with untreated Cushing's. Aspirin and other NSAIDS only aggravate this problem and this risk.

Here is a quote from the website of the American College of Gastroenterology (http://www.gi.org/patients/gibleeding/index.asp#nsaid2) that discusses the increased risk for humans:

Patients taking NSAIDs who also are taking a prescription corticosteroid, medications like prednisone (in doses over 10 mg), have been found to have a seven fold increased risk of having GI bleeding.

We do have members here who have had success with giving other classes of pain relief to their Cushpups. Hopefully some of these folks will stop by with additional suggestions for you.

Marianne

P.S. Kathy, I just read your added info, and I'm really glad that your GP vet decided to proceed with monitoring testing. Hopefully, the results will shed a lot of light on the effectiveness of Macy's current dosing regimen.

Harley PoMMom

09-14-2010, 03:34 PM

Hi Kathy,

Usually our cush-pups have an enlarged liver because of the excessive amount of cortisol in the pups body. For this reason also, NSAID's are usually not the preferred medicine to treat our cush-pups because NSAID's can be hard on our cush-pups already over-worked liver.

All NSAID'S carry a small risk of side effects, so careful observation of your pet while on one of these medications is important. If they occur, the most common side effects are vomiting and diarrhea. There might also be kidney and liver problems, and even bleeding.

http://www.lbah.com/canine/arthritis.htm

The article that I provided a link to you does have information about adequan and cosequin which I believe members do treat their cush-pups with.

Love and hugs,
Lori

zoesmom

09-14-2010, 07:38 PM

Yes, we had the same problems with our Zoe, who was large, though not quite as big as your Macy. The weak legs became an ever-increasing problem, even when her cortisol was under control. Of course, they continue to age, regardless of cushings or not.

I think the weak legs can be 1.) from the cortisol levels not being under optimal control or 2.) the cortisol is at a good level, which then allows arthritis to kick in.

Zoe (generally around 80 lbs) was dx'd at age 9,, but as the years went by, and even with decent cortisol levels, her legs got worse. I pushed for some sort of medication to help, knowing full well that nsaids were a bad idea. Our IMS finally gave in and allowed me to give her 1/2 her normal dose once a day (as opposed to twice a day - the usual). I'd give the melox in the morning and then give her tramadol in the evening, which is basically just for pain (no anti-inflammatory properties). That helped somewhat. BUT the IMS was still concerned about the meloxicam because of the risk of GI bleeding in a cush pup. She wouldn't give us anymore prednisone after prescribing the melox, which I always liked to keep on hand - just in case of low cortisol. She said if Zoe had any meloxicam in her system, that she shouldn't be given prednisone for at least a week. So it was a catch 22.

. I wanted to try the adequan - which many here have used - but our IMS didn't feel it was that effective. In hindsight, though, I wish we'd pushed harder to try the adequan because of all the positives I've read about it here. You should certainly ask about it for Macy. Sue

gpgscott

09-14-2010, 08:54 PM

I used adaquan for years with Moria. First on an intermittent basis and then in the last couple years of her life on a once monthly basis. It improved her joint pain a lot and did not affect her liver numbers drastically.

There is also the possibility of gastric upset with oral nsaids so if you are administering these please make sure you are using the lowest possible dose.

Scott

ktzndgs

09-14-2010, 09:00 PM

Meloxicam is one of the meds I have for Macy but I'm keeping that for a "rainy day".

She's got *4* doctors. 5 if you count her orthopedist! (I don't have that many doctors!) One of them is a holistic vet and, of course, my regular vet. I know one of them would be happy to do adequan shots. Adequan seems to be something that sometimes works, sometimes doesn't.

This leg weakness is happening pretty fast! She was just diagnosed in June! But I definitely saw weakness yesterday. I've added L-Glutamine and will start daily long walks soon. I'll also let you know what the blood tests we did today tell us.

One of the drugs the Neurologist gave us was Gabapentin. Is that ok to give a Cushing's dog? I forgot to ask the IMS.

BTW the IMS assistant said that the liver problems that are associated with Cushing's are the reason they don't like to see our dogs on NSAID's. Essentially, the same thing you all said.

I have another question. Somewhere in the files I remember someone mentioning leg shaking. Macy bagan to have leg tremors many months ago. What's that about??? They seem to happen when she's worried. Any leg can be involved.

Kathy

ktzndgs

09-15-2010, 06:18 PM

I haven't seen the actual results yet myself but my vet just called and said that the acth stim test we did yesterday showed that Macy did not have a reaction to stress! He said her cortisol level was "2" before stimulation and "2" after. ?? He believes that means she's getting too much medication and wants her off the vetoryl between now and Monday and asked me to call him then to discuss how she's feeling. I'm uncomfortable with having her off the meds completely but guess I'll go along with it for now. I'd rather have her on one pill a day but maybe the 60mg is just too much right now.

She clearly needs medication but we've begun believing the vetoryl was making her sick and wondered if she needed a much lower dose.

I started her on L-glutamine.

Kathy

labblab

09-16-2010, 10:57 AM

Hi Kathy,

I think that Apollo's mom, Sonja, gave you this info earlier. But I just wanted to repeat it now because it may come in handy for your vet. Here's a link to contact information for the U.S. office of Dechra (manufacturers of Vetoryl):

http://www.dechra-us.com/Default.aspx?ID=365

Dr. Tim Allen is a vet who serves as a technical representative at Dechra, and I know he'd be happy to talk with your vet about Macy's ACTH results and possible dosing recommendatons if he wishes to call. Dechra may or may not feel pressing concern about the fact that there was no difference between the "pre" and "post" numbers since they were both above 1.45 ug/dl. But these results are certainly on the low end of the desired range, and it does seem startling that by shifting to the twice-daily dose of 60 mg., Macy's ACTH results are so much lower than they were on the once-daily 120 mg. (2.0 ug/dl compared to 12.2 ug/dl). I know I had written earlier that we've been warned that dogs may be more easily over-suppressed with twice-daily dosing, but this seems like a really dramatic difference. Your vet might be interested in Dr. Allen's take on the whole situation.

Marianne

ktzndgs

09-17-2010, 10:03 AM

I now have a copy of the test results.
Cortisol pre (before meds & bkfst) 2.6
Cortisol 3 hours after meds & bkfst 2.0
Cortisol 1 hour after acth stim. 2.0

Normal response to ACTH canine: 5.5 - 20.0 ug/dl

Her last dose of vetoryl was Wednesday morning and she's now more alert. She was fully wagging her tail last night. I'm a little uncomfortable that my IMS told me the acth stim wouldn't be a valuable tool in this situation and that I've gone ahead and done it anyway. Now I'd like him to know what's going on but don't know if I'll get anywhere.

Could they have missed her vein and she didn't get the dose IV? I've been told in the past that Macy's vein is hard to find. (Might really be reaching here.) I wonder if that would account for the low post number?

Kathy

ktzndgs

09-18-2010, 10:01 AM

Does anyone have a number where I can reach Dr. Oliver at UTK? I thought I saw one posted but can't find it now. I found a Dr. Oliver on the internet at UTK but didn't see anything related to Cushing's under his name.

Thx!
Kathy

labblab

09-18-2010, 10:41 AM

Kathy, Dr. Jack Oliver at UTK is indeed the man you want. Here's a link to his contact page:

http://www.vet.utk.edu/faculty/oliver.php

Even though Cushing's is not specificially mentioned by name, here's the summary of his clinical interests. Cushing's would fall under this general heading.

Adrenal disease disorders in domestic animals (pathogenesis and treatment). Clinical endocrinology and toxicology diagnostic testing.

For some reason, I see that his email address is not listed on that page. But as an alternative to calling, you could also email him. A number of us have done that, and he always answers really promptly if he is in the office and available. Here's his email address: joliver@utk.edu

Marianne

ktzndgs

09-18-2010, 03:57 PM

Thank you! That's not the guy whose page I found at all! :)

Kathy

ktzndgs

09-21-2010, 06:00 PM

Macy's last vetoryl dose was last Wed. morning. By Thursday evening she was returning to normal, Friday gave me my dog back. She was alert, happy wagging her tail and running. By Saturday evening she was starting to drink too much water and by Sunday night she was back to the Cushing's symptoms. They've decided to reduce her dose to 30mg twice a day and see what happens. If she look ok I'm going to ask for another acth stim test in a few weeks but I think I'll take her back to the ims for it.

This is harder than I ever expected!

Kathy

apollo6

09-21-2010, 06:18 PM

Welcome
yes it is a roller coaster ride-cushing.
Apollo has the hind leg weakness also, falls easily and has a stiff gait.
I was told it can be due to muscle wasting caused by the overproduction of cortisone. It can take a few months until it improves.
Hugs from Sonja and Apollo

ktzndgs

10-11-2010, 01:43 PM

Macy was tested by her regular vet while taking 60mg twice a day. Based on the results of that test her IMS decreased her dose to 30mg twice a day. That gave me a dog who is once again stinky from urine. Since the reduction in meds we had a weekend away from home and during that weekend it became clear to me that her IBD has been the problem all along and not the cushing's meds. While she's taking flagyl I see an improvement in her energy level so I'm working with her regular vet to get the ibd under control and I went ahead and increased her morning dose to 60mg and left her evening dose at 30mg. That seems to agree with her. I'm going to try to get back in to see the IMS to discuss this. I feel badly calling and leaving him messages and then having him fax me.

Now a question.
In discussing all of this with him recently he said that if the vetoryl doesn't seem to agree with Macy he'd suggest we wean her off vetoryl for a *week* put her on a loading dose of lysodren and then a maintenance dose and we'd stop giving lignans and melatonin. This is the girl who started treatment with these numbers.

cortisol ng/ml baseline 59.9*, norm 2.1-58.8, post ACTH 223.7*, norm 65.0-174.6
antrostenedione ng/ml baseline .64*, norm .05-.57, post ACTH 6.40*, norm .27-3.97
estradiol pg/ml baseline 93.2*, norm 30.8-69.9, post ACTH 85.7*, norm 27.9-69.2
17OH Progesterone ng/ml baseline .27, norm .08-.77, post ACTH 5.75*, norm .40-1.62

So I don't understand. It seems that the lignans and melatonin are very appropriate. Can I/should I contact Dr. Oliver directly to get input???

I haven't given her any melatonin lately but I'm currently giving her 2 tsp of lignans in the morning. I was planning on adding the melatonin back in once I'm fairly sure she's somewhat stable. I'll add it back in 1/4 of a tab at a time at night.

Is there any reason why I would *not* want to give her the lignans and melaton whether on or off vetoryl or lysodren?

Kathy

labblab

10-12-2010, 01:21 PM

Is there any reason why I would *not* want to give her the lignans and melaton whether on or off vetoryl or lysodren?

Hi Kathy,

This may be a question that you want to go ahead and ask Dr. Oliver himself. As we've discussed earlier in your thread, I don't think the combination of Vetoryl/lignans/melatonin is one that UTK has been expressly recommending (and therefore I don't think there's much field experience that has been reported thus far). And I also don't know what their recommendation is re: lignans & melatonin if the intention is to fully load a dog on Lysodren. The lignans/melatonin (and sometimes low-dose Lysodren) combo is usually tried as a precursor to a full Lysodren load. Since Lysodren also effectively lowers most other intermediate hormones in addition to cortisol, I'm not sure how useful it is to continue the lignans/melatonin combo if a dog has been fully loaded. But this may depend largely upon the dog's estradiol level (which I realize is somewhat elevated in Macy's case). Dr. Oliver can advise you more fully about that, too. In that vein, here's a repeat of something that Debbie ("StarDeb55") posted earlier in your thread:

Kathy, the way that both my former IMS & my GP vet explained this to me is that lysodren will control all hormones produced in the adrenal glands. The main reason why you add melatonin + lignans is because of an elevated estradiol. Estradiol can be produced in non-adrenal tissue such as fatty tissue & reproductive tissue, so this is what needs to be controlled with the above 2. Basically, my IMS said that it is "a crapshoot", to use her words, to control estradiol levels. You may be able to, & you may not.

Debbie

Also, one cautionary note if you and your vet do decide to switch Macy from Vetoryl to Lyosdren. You mentioned waiting just one week in between? The published recommendations with which we're familiar recommend a "wash-out" period of no less than thirty days when switching between the two medications (and this recent Q & A with Dr. Feldman of UC Davis (http://veterinarynews.dvm360.com/dvm/Internal+medicine/Cushings-disease-and-other-adrenal-gland-disorders/ArticleStandard/Article/detail/672663?contextCategoryId=40534) recommends no less than six weeks):

Any dog switched from one to the other should receive no medication for at least six weeks.

Marianne

ktzndgs

12-03-2010, 11:14 PM

I've spent the past few months working to slowly increase Macy's vetoryl dose from extremely low to slightly higher. I was working on increasing it yet again when she seemed to get sick. I thought it was the Vetoryl but now it appears she has a bladder infection! I actually took her to the specialist the other day (read $$$) because I couldn't figure out what I was seeing! He did do a urine specimen and culture but the results won't be back until Monday. Meanwhile my poor girl is getting more and more uncomfortable. What do I do?? He's not there on weekends. Call my regular vet a plead for antibiotics?

The confusion over Macy's symptoms are because she's not demanding to go out to pee a lot. She just gets very restless and just pees in the house! (I was blaming the new puppy!) I didn't get suspicious that she might have an infection until the other dogs started showing way too much interest.

Can anyone suggest any temporary treatment to keep us until Monday?

Kathy

AlisonandMia

12-03-2010, 11:21 PM

I would take her to the regular vet. There are quick, cheap, in-house tests that can be done for UTI's and while they won't tell you what bug is responsible (which a culture and sensitivity will) it will tell you if antibiotics are likely needed. The vet will probably start a broad spectrum antibiotic that is active against the "usual suspects" and then, once the culture and sensitivity comes back the antibiotic can be changed if necessary.

I have heard of vets treating possible UTI's empirically - even without testing or even with negative tests (false negatives are possible).

I've had a couple of UTI's in my time and I don't think that a UTI is something anyone would want to suffer for a second longer than necessary. And there is the risk of it going up into the kidneys as well which is very serious...

Has Macy got a history of UTI's?

Alison

ktzndgs

12-04-2010, 12:43 AM

No, she doesn't have a history but she's acting weird. Fidgety, stressed, in, out, in, out. Peeing more than normal and peeing in the house. I just hate to ask her to wait until Monday but I've already spent $149 for the first urine test & culture.

Kathy

labblab

12-04-2010, 08:23 AM

Kathy, I wouldn't wait until Monday to take action. It's really unfortunate that the specialist didn't give you any kind of contingency plan while you're awaiting the culture results. But the discomfort that you are describing can go from bad to MUCH worse in a short amount of time, necessitating a much more expensive ER visit on Sunday. I speak from experience. One of my girls started acting "antsy" as you are describing on a Saturday after my regular vet had closed, and by Sunday noon she was peeing blood and crying in great distress.

I would contact your regular vet this morning and describe her symptoms and also the pending culture. It may be the case that he/she will go ahead and just prescribe a "temporary" antibiotic for you to pick up without even needing to examine Macy. I just hate to think of Macy having to suffer until Monday.

Marianne

ktzndgs

12-30-2010, 09:20 PM

I thought I should follow up on the stuff that was going on with Macy. Sorry to have dropped out of sight but one of my cat gots sick and died. :(

Macy was acting strange, kind of tucking her rear in a bit, peeing, smelled bad, clearly uncomfortable, fidgety. The specialist diagnosed her with dermatitis of the vulva. We used an antiseptic wash and followed that with Aveeno Oatmeal soak. I'd have her lay on her back and put a sopping wet facecloth on her. While she laid there I'd continued to pour more of the soaking solution under the cloth. He said to have her soak for 2 minutes but being an overachiever I had her soak for 10. She loved it.

After doing that for awhile she still had a strange smell and still seemed uncomfortable so I took her to my regular vet who did a vaginal swab. She had an infection. She's been on amoxi for about a week now. She seems less fidgety but my other dog is still too curious about her so I'm going to take get in touch w/him and find out if he wants to repeat the swab now or wait.

Macy is getting the fur back on her tail (remember, a Newf with no fur on her tail!) but the fur on her body is slower to return. Her face seems very fuzzy and so do her legs but her "armpits", sides and flanks are thin. Will that ever return??

I currently give her one tsp of lignans each am & pm and 6mgs of melatonin just before bed. She also gets L-glutamine and Ligaplex. She is on vetoryl and IMS is now increasing the dose very cautiously. The last increase just added 10mgs am & 10 mgs pm. The split dose works for us and he said he factors that into her acth stim tests.

Kathy

ktzndgs

01-31-2011, 11:11 PM

Sorry but I don't understand how to post a message that has a new subject line.

Macy (97 lbs) takes 80mg of Vetoryl in the morning and 50 at night. Tonight I picked up the wrong medication container and gave her the morning dose again at dinner. I know the dose she's on is considered to be a low dose for a dog her size but now I'm worried. I gave her 5mg of pred. Is that ok? Since she's had some pred is there something I need to do tomorrow? More pred??

Kathy

AlisonandMia

01-31-2011, 11:28 PM

I suspect that your mistake will make no difference at all to her. If you went on giving 80mg 2x per day for several days then you would possibly notice something but this one-off occurrence should be most unlikely to do anything. I've heard of people accidentally giving a one-off double dose of trilostane (or dosing the wrong dog) with no ill effects.

The question remains what are you going to do tomorrow? If you are feeling super cautious (and I have a feeling you are!) you could just give her no trilostane tomorrow and and continue as normal the day after - providing, of course, that you notice no ill effects tonight. In your position I think that is what I'd do.

Good luck and keep us posted.

Alison

ktzndgs

02-01-2011, 12:03 AM

Whew! We've had such a hard time with her but I think we're finally on the right track and now this! I actually did want to increase her dose but the IMS wanted to do another acth before we did that. Now it's going to have to wait.

Do I have to worry about having given her that little bit of pred? It was just 5mg. Do I need to wean her off? Guess I should call the vet in the morning.

Lesson learned. Never prepare meds under pressure when you're already over-tired. :( I've already relabeled the container so I can easily see what's inside.

Thanks!!!
Kathy

AlisonandMia

02-01-2011, 01:29 AM

No need to wean off pred if only one dose is given. The only effect of the pred that you will see (if you see anything) is probably some transient, mild Cushing's symptoms - most likely slightly increased urination and maybe some panting. You might need to take her out during the night or very early in the morning. The pred should be completely out of her system 24 hours after the dose.

I'm a great believer in color-coding things like med containers to make making mistakes harder or even doing something like putting the larger dose in a larger container - something that will make an impression on you even when you are stressed and distracted or sleep-deprived or whatever.

Alison

ktzndgs

02-01-2011, 10:00 AM

Thanks. I've relabeled the containers so that they now say MORNING and EVENING in very large letters on all sides. I'm considering putting them in different cabinets! I've been dealing with two pretty sick animals for several months and am amazed this hasn't happened before. I had to use a chart for awhile.

Thanks for being there!

Squirt's Mom

02-01-2011, 10:29 AM

Hi Kathy,

Alison is always such a great comfort for us on the other side of the sun...she and others across the big pond are here when most of us are sound asleep! :D Can't tell you the number of times things have happened in the middle of my night but when I come here, someone always answers. What a blessing for us all!

One morning a couple of years ago, I too was rather foggy and ended up taking Squirt's meds instead of mine! At the time, she was on Anipryl, which is a speed of sorts. Well I panicked, of course, and ran to the bathroom and started making myself upchuck the pills. Our big red dog, Ruby, decided that was a new game and she was bouncing around in that tiny bathroom barking her head off while Squirt sat by the commode staring at me like I had lost my wee little mind to "steal" her medicine! :p

Another time, I gave Squirt my Niacin instead of her G/C because they were both huge white capsules that I mixed up when loading her box. She got 1000's of mg more than she should have ever needed IF she needed it, and the panic set in once again. Fortunately, she would have had to ingest much, much more before it would have caused a problem.

Those two incidences taught me to keep my pills FAR away from the dogs meds ALWAYS. :rolleyes:

I'm glad Macy didn't have any problems with the mix-up and very glad that you recognized what had happened. You were more on the ball than you thought! ;) Don't feel bad about what happened, ok? You and I aren't the only ones who have had some excitement due to mistakes with the myriad meds we deal with! ;):p

Hugs,
Leslie and the girls - always

ktzndgs

02-01-2011, 06:49 PM

Thanks. It's nice to know someone understands the total panic that sets in. I was considering taking her to the ER until I heard from Alison.

Kathy

Bichonluver3

02-02-2011, 12:03 AM

And that's why this forum is such an AMAZING place!!!!!:D:D:D
Carrol

ktzndgs

02-24-2011, 06:21 PM

I wish I could figure out how to post under a new subject line while still keeping my post together! This post is in reference to a gassy dog on Vetoryl who needs Gas-x.

Macy has now been on Vetoryl since last June with lots of trouble spots. She also has IBD and it appears that balancing Vetoryl with IBD is the problem. We've known for awhile that she was in pain and thought it was a orthopedic but xrays of her spine really don't show anything wrong. When the holistic vet saw the xrays she commented again (as she did when she saw the xrays before this) that there's an awful lot of gas in Macy's belly.

Has anyone else had a problem with their dog becoming gassy on Vetoryl or is this just another symptom of the IBD? Does anyone know if it's ok to use Gas-X when the dog is taking Vetoryl?

Kathy

Harley PoMMom

02-24-2011, 06:54 PM

GAS-X (Simethicone) can be used in dogs to help with unusual flatulence or gas discomfort. I don't know of any interactions with Vetoryl.

GAS-X Dosage
Dogs
weight amount

small ¼ adult dose
medium ½ adult dose
large 1 adult dose

http://www.walkervalleyvet.com/otc-meds.htm

Love and hugs,
Lori

ktzndgs

03-04-2011, 12:02 AM

Something interesting came up today. The vet and I decided to do a food allergy blood test on Macy because she's also got IBD and has been having trouble lately. She had a staff member call the lab to find out if the Cushing's will skew the results of the test. The answer was no AND the lab guy said it's a really common question they're asked all of the time. Why would that be??? Why would so many Cushing's dogs be undergoing testing for food allergies?

Kathy

lulusmom

03-04-2011, 01:26 PM

Hi Kathy,

Anybody whose dog has had severe allergies are pretty familiar with prednisone. This is routinely prescribed, usually short term, for severe cases. Prednisone is a steroid, a synthetic form of cortisol, and if given long term the dog can develop iatrogenic cushing's. This is the easiest form to treat because the fix is to wean the dog off of prednisone. We've actually had members whose vet's were clueless that prednisone or topical steroid was causing the problem and commenced full blown cushing's diagnostics. That would be one reason why you would see dogs with allergies, also have cushing's.

A more likely reason a lab would be asked that question is because dogs with cushing's over produce an adrenal steroid called cortisol. High levels of circulating cortisol in the blood is the hallmark of naturally occurring cushing's and because cortisol is the body's own anti inflammatory, dogs with cushing's are self medicating their allergies as well as arthritis. Once the cortisol is brought down to acceptable levels with treatment, the allergies are unmasked and the petowner then discovers that their dog has allergies and the testing begins.

Glynda

ktzndgs

03-04-2011, 06:45 PM

I knew about the effect of cortisol on the body but would not have thought *that* many dogs with Cushing's would also have allergies. My dog has IBD that has started causing problems since she started taking Vetoryl so now we're looking for a way to keep the IBD under control so we can treat the Cushing's without making her way too sick. There's got to be a way to balance this.

I wonder if some of the skin issues Cushing's dogs have is also the reason why more are allergy tested. ??

Kathy

lulusmom

03-04-2011, 07:26 PM

I didn't really think about it but you are right, skin issues could be a reason why a cushdog would have allergy testing done.

ktzndgs

04-03-2011, 03:27 PM

Macy had a big setback and has now been off Vetoryl for two weeks. What I'm learning is that the Vetoryl dose was too high and she was reacting to it but I've come to that conclusion on my own. She weighs about 95 pounds and was on a dose of 150mg (split it two daily doses) but stopped eating, was lethargic, weak and as I mentioned in an earlier post she's been dealing with really bad gas. The IMS finally said to stop the meds for awhile.

Now we're at a crossroads and have to make a decision about what to do next. Do I....

- Stick with her IMS and retry Vetoryl? He's the one who put her on Vetoryl in spite of the fact that Vetoryl increases the levels of androstenedione and estradiol. Both hormones were already high per the test results from UTK. He's also had me give her lignans and melatonin with the Vetoryl.

- Stick with her IMS and switch to Lysodren? The IMS said he'd only wait a week between Vetoryl and Lysodren though and I now understand that can be very dangerous. He also said he'd start her on a loading dose after that short break and again, I've learned that can be *very* dangerous. If I stick with him I'd have to get him to agree to do more things my way. This man is very smart and well respected and I can't imagine he'd agree to go along with me. He is reasonable but I'd have to think he had something in mind when he made those suggestions.

- Or do I let my regular vet take care of her? I'm really not convinced the general vets have a good handle on Cushing's disease and the treatments now available. *But* my regular vet said he'd like to wait 2-4 weeks and then start her on a maintenance dose rather than a loading dose. The idea being she's been on Vetoryl so long that will work. I spoke to Dr. Oliver at UTK and it sounded as though he liked this option best. Doing that would keep Macy off Vetoryl long enough to retest her hormones (I'd love to see where they are!) and keep enough time between Lysodren and Vetoryl.

- Problem w/Lysodren is that it's to be taken with a fatty meal. Macy can't eat fatty food. Whatever it is with the iBD she's got I have to be very careful not to give her fat. :(

I'm very tempted to restart Vetoryl if for no reason other than she'd feel a bit better sooner. I've now learned I was overdosing Macy on lignans so maybe with a lower dose of Lignans the Vetoryl will work better. Right now she's panting, pacing, drinking water and her back legs are pretty weak. No hair loss yet and her appetite is pretty much ok again though there are still things she won't eat select things.

I have a question.... Can folks please tell me what level your vets try to get your dog's cortisol down to? Macy was taking 70mg in the morning and 40mg in the evening and her acth was 3.7 pre and 6.1 post. Then her dose was increased to 80 and 50 and the numbers went to 4.0 pre and 3.1 post which her IMS was quite happy with. ??? Now that I've done more research they look too low to me. Based on those numbers we actually added more Vetoryl.

I know some of us refer to our big dogs as slow metabolizers and I believe that's been part of Macy's problem. I just wish the vet community would also recognize this exists.

Kathy

Harley PoMMom

04-03-2011, 06:06 PM

To me, one can not go by numbers alone. If the dog's clinical signs have abated and the dog is feeling well than the treatment is working. So on that note, how was Macy feeling and were her symptoms abated when her post stim numbers are higher or lower?

According to Dechra, a post stim number of 9.1 ug/dl is considered appropiate as long as the clinical signs are well controlled.

Love and hugs,
Lori

frijole

04-03-2011, 07:12 PM

I hope the trilo users chime in but from what you posted I am concerned your IMS is WAY over their head. It appears that the dose was simply too high and therefore you had problems. What was the acth level at the point you stopped giving trilo? Did you do one then?

Sounds to me like you simply reduce the amount of trilo. You are right - the IMS is wrong - you must wait a MINIMUM of 30 days before switching to lysodren. That is per the people at Dechra. Why does the IMS want to switch?

Like Lori said - if the dog is feeling fine and symptoms have gone away don't worry so much about the numbers. Kim

ktzndgs

04-04-2011, 12:24 AM

We didn't do an acth at the time we stopped the trilo. She was just so sick and then she stopped eating so I stopped the meds.

I think everyone has been ready to switch her off trilo to lysodren because we keep having problems with the trilo making her sick but the dose has been too high all along! We started at 120mg/day but when I read the Dechra site we could have started out at 95mg/day. From there the dose was bumped up to 180 mg per day. Not outrageous but that had her nearly comatose. I had to shake her to wake her up to go outside to pee! The dose she was most comfortable on was 110mg/day.

Last September my regular vet did an acth stim that showed numbers of 2.6 pre test and 2.0 post. I stopped *all* medications at that point, waited a bit and then took the opportunity to see what might be causing a problem. I restarted her on Vetoryl at a *very* low dose and just kept adding a little at a time. She seemed to be doing pretty well around late October, November and December. Then we increased her dose a little She was still doing ok and if I recall correctly in early February was actually doing really well but then we did that last increase and she seemed to fail. Everything kept going wrong. Her rear legs got weaker, her appetite was awful, she was totally dull. I took her to the IMS and he suggested I have a full spine survey done because he thought it looked like her back was a problem. By this time she was having a major problem with stomach gas - roaching her back, etc.

Per Dr. Oliver I was giving her too much lignans so I'm hoping that's what caused the gas. He said they could be a problem with her IBD.

The IMS we see is supposed to be really good so now I don't know what I'll do. He does seem to be in over his head. Or maybe just not particularly interested.

Kathy

zoesmom

04-05-2011, 03:44 PM

Hi Kathy -

This is just my opinion, for what it's worth. I considered switching my Zoe at one point too. But decided against it and stuck with what we knew - trilostane. I think it would be important to do an ACTH before restarting, though. And then, based on the results, take a more cautious approach to dosing. You can always work 'up' but if the dose is too high, then that's way more of a problem. It sounds like Macy was doing ok on the earlier doses anyway. A trilo dog can have numbers above 5 and up to 9 and not to worry if their symptoms are controlled. Zoe did best with her post-number between 5 and 7.5 or so. I also noticed that one of Macy's test results showed non-stimulatory results (2.6 pre # higher than 2.0 post #). Maybe she needed a longer break at that time to get back on track. In any case, a break and then restarting on a more conservative dose of trilo is probably the path I would take. Kind of like starting all over again.

Also, Zoe had IBD (also SIBO - which 60% of IBD dogs may have) and horrific gas and we finally discovered tylan. Here I go again. I can't say enough about this med. It worked miracles for Zoe. Not only did it stop the gas and intestinal issues, but it seemed to stabilize her on her other medicine doses (no more dose adjusting was required after starting the tylan, basically the trilo and thyroxine). Her appetite improved plus her drinking also dropped dramatically (it had improved on the trilo to a degree but with the tylan, she went from 10 - 12 c./day to about 4 - 7. She was 80 lbs givve or take.) Overnight, that happened. AND, best of all, her chronic uti's virtually disappeared. Tylan can be bought online without an rx, but google it and you can learn lots more about it - all positive. It is considered very safe, even long-term. Zoe took it the last 1.5 yrs of her life. (Vet's version of tylan was way too expensive, so our IMS suggested buying gelatin capsules and the tylan powder and filling the caps myself. It's really bitter so can't be sprinkled on food.)

IMO, though, I think switching to lysodren might be premature at this point. It sounds like Macy was slightly overdosed on it. I also gave Zoe melatonin - but no lignans. 3 mg bid. That was what Dr. O. suggested when I ws considering switching Zoe to lysodren. Sue

ktzndgs

04-06-2011, 12:39 AM

Sue,

Were you dealing with elevated hormones too? That the complicating factor here. Macy's cortisol, androstenedione and estradoil were all elevated and trilostane causes both of those hormones to go further.

Dr. Oliver suggested I go ahead and recheck her hormones at about 3 weeks post trilo and see where she is. She does seem quite a bit better but weak. While she's off trilo I'd like to have an mri done on her neck to see if it's causing the problems being attributed to it so we can put that speculation to bed. My regular vet has suggested that while we're at it we have a look at the pituitary. Then we can make a decision.

Why did you use melatonin and not lignans?

Thanks for the info about tylan. I'll definitely have a very serious discussion w/both vets about it. What's the gas from??? The vets thought I was nuts when I described it and would really like to say it's something else but I really was getting worried she was going to bloat on me! Wasn't till I said that that they said to use GasX. :(

the last time I restarted her she gook 30mg twice a day. That approach worked really well.

Kathy

zoesmom

04-06-2011, 12:07 PM

Kathy - I never had the UTK panel done on Zoe but thought about it a couple years into her treatment because of ongoing problems (up and down cortisol and the still not ideal water consumption.) Her whole life, I had wondered if maybe the latter was from diabetes insipidus - but again, we never tested for that either.

I began using the melatonin because of her seizures. It is thought to help with them when given as an addition to anti-seizure meds. However, knowing that trilostane can sometimes mess with those secondary hormones, I figured the melatonin was a double benefit for Zoe and couldn't hurt. I considered switching to lysodren because I felt that maybe some of those other hormones were causing her erratic cortisol levels. Her trilo dose went up and down, but mostly up. So I corresponded back and forth with Dr. O. about whether to stop the trilo and get the panel done with an eye to switching to lyso. Finally decided to leave well enough alone because she'd been thru so many tests and was on so many meds.

I found it interesting that once we started her on tylan, her cortisol levels seemed to settle down and there were no more trilo adjustments. My theory is that her gut was so messed up from the IBD and SIBO and that was affeccting how well or poorly she was absorbing her meds. (Maybe part of it was all the antibiotics she had to take over her lifetime for utis. Most years, it was 6 or more courses of antibiotics for the utis.)

Her u/s for cushings diagnostics showed IBD signs. Later, our vet did the SIBO test because of the horrendous gas. That's 'small intestinal bacterial overgrowth' - higher up in the intestines - and often goes hand in hand with IBD. They test two things (think it was folate and something else - would have to look it up) to diagnose the SIBO. One of those in Zoe was out of range but not the other, so vet suggested we try the tylan anyway and 'BINGO' - it worked like a charm. And as I said, there were all those other unexpected benefits that happened almost immediately. (The reduction in drinking, the utis stopping, firmer stools, and no more dose adjustments to her trilo and thyroxine.)

I think you are on the right track with your plan. Let us know how things come out. Sue

ktzndgs

04-07-2011, 12:22 AM

Sue,

I didn't know the gas had a name. Sibo. Hmm. I've heard folks talk about it but didn't know what it was. How come all these vets didn't tell me that was a possibility? :( I spoke to my vet today! We go tomorrow for bloodwork in prep for the mri. I'll ask about that then.

Macy's IBD has not caused much of a problem over the years. We've been very lucky. I switched her to a good dehydrated food very early on because it was clear to me the food was making her sick. That seemed to fix it. After that she only got sick when I made mistakes and I made some big ones. UTI's are rare but Macy's IBD is the eosinophillic so maybe that makes a difference.

Did you use flagyl at all prior to tylan?

Is anyone aware of a vet by the name of Feldman who is an endocrinologist? My vet said he's written books? He also has very different opinions on the effect of Vetoryl on hormones from what I understand.

I'm pleased to report that Macy is doing surprisingly well tonight. She has not paced, she's relieved herself like a normal dog, she's sleeping with all fours in the air and dreaming right now but earlier she came outside with me with the puppy and even ran a bit. That's a dog I haven't seen in a very long time.

Poor Dr. O. must be getting tired of my emails. I've been bugging him for more info so I understand the numbers. It's not enough if my vet understands them, I want to as well.

Kathy

StarDeb55

04-07-2011, 12:39 AM

Kathy, I saw you question about Dr. Edward Feldman. Dr. Feldman is one of the foremost experts in the world on veterinary endocrine disorders. He is at the Univ. of California/Davis vet school. As I understand it, he pretty much dictates all policy as to how the vet school handles/treats Cushing's disease. He has written so many articles, I couldn't even begin to list them. We have links to several of his articles in the important information section.

Debbie

labblab

04-07-2011, 09:34 AM

Is anyone aware of a vet by the name of Feldman who is an endocrinologist? My vet said he's written books? He also has very different opinions on the effect of Vetoryl on hormones from what I understand.

Hi again, Kathy.

I know it's been awhile since I've had the chance to write to you, but I do want to add another quick note about your comment above. As Debbie has said, Dr. Feldman is a foremost authority on canine Cushing's. Although I don't know for certain what his position is as to his "very different opinions on the effect of Vetoryl on hormones," I do want to revisit some general comments that I made to you earlier.

Debbie is correct about Dr. Oliver's research findings re: trilostane's effect on the intermediates -- he tells us that trilostane inevitably increases the following hormones: androstenedione, 17-hydroxyprogesterone, estradiol and progesterone. So just as Debbie says, he is not a fan of recommending trilostane when a dog's testing profile already includes significant pre-existing elevations in these intermediates.

However, there is not a concensus about this issue among vets who are actually out there treating Cushing's -- there is uncertainty as to whether or not elevated intermediates will actually cause any clinical issues for any given dog. If ONLY intermediates are elevated on the UTK test for a symptomatic dog (and the cortisol level is normal), then it can be assumed that the intermediates ARE [may be?] the source of trouble for that dog (and that's where the melatonin/lignans treatment comes in, along with possibly adding Lysodren at a low dose because Lysodren also has a lowering effect on intermediates as well as cortisol). But if a dog's cortisol is elevated along with some of the intermediates (as is the case with Macy), many vets choose to primarily address the cortisol (using either trilostane or fully loading the dog with Lysodren at a higher dose, or sometimes trying Ketoconazole)...

And this is a long-winded way of saying that, even though Dr. Oliver is not a fan of trilostane for a dog with a testing profile like Macy's, there are vets in clinical practice who choose to prescribe trilostane regardless of the dog's intermediate profile.

Even though I wrote that comment several months ago, I believe the situation remains the same. There are many specialists who do not choose to investigate the status of a dog's intermediate hormones if they already know that the cortisol is elevated. It has been their experience that any dog with elevated cortisol is also going to exhibit elevations in at least some of his/her intermediate hormones. Although it is clear that elevated cortisol is a problem, they are not convinced that the intermediate elevations are necessarily a source of clinical problems for any given dog. Therefore, they do not shy away from prescribing trilostane, regardless of a dog's intermediate profile. It is a different viewpoint from Dr. Oliver's.

Marianne

ktzndgs

04-07-2011, 05:59 PM

Thanks! I didn't know Dr. Feldman's whole name. My regular vet is apparently very familiar with him and his articles.

The first several months of Cushing's gave me a lot to deal with and there was a lot to absorb so I read your emails but didn't completely understand all that was being said. If the elevated intermediates aren't really known to play a roll in Cushing's you're saying the dog might be treated using Lysodren with melatonin and lignans which will cause the intermediates to go down or just trilostane without regard for the intermediates? So there really is no one approach that's better than another. It all just depends on what the vet you end up with does. I've been over complicating it? That would make sense as I can't figure out how you pick one treatment over the other.

The above makes me question the sense in checking her hormones again once she's off trilo for 3-4 weeks. What's to be gained?

Where I get lost is in my vet electing to prescribe trilostane with melatonin and lignans since there isn't much known about the effect of this combination. It makes me feel a bit like she's a test subject.

One thing I did right. My instinct when I started out with trilo was to dose my dog twice a day to keep the level of medication fairly even and to avoid the impact of one large dose per day. Dr. Oliver agreed that was the best approach. The dose I gave Macy wasn't evenly divided but if we go back to trilo I'll do a better job of dividing it more equally.

Gosh, this is harder than I thought it would be. It's taken such a huge toll on Macy. She's (a Newfoundland) down to 88 pounds but I'm packing food into her and hope that will help. Today she's in the kitchen with me, laying on her back with her feet in the air. That probably sounds perfectly normal to some but having her come into the kitchen to spend time with me is a very big deal these days. She normally spends her days on the sofa. My freestyle champion can't even do a doggie play bow anymore. :(

Kathy

ktzndgs

04-10-2011, 12:15 AM

I know this has been discussed before. I did a search and came up with too many hits to go thru. Bear with me. Is it ok to ask my og to go thru the night with a little less water? Macy is a Newf. Right now she's the size of a kid. She's on vacation from her Vetoryl while we figure out if lysodren should be our next step. Well, last night and today she's started peeing in the house again. During the night she normally has about 1.5 quarts of water in the bedroom and another 1.5 quarts downstairs that she can drink. She's really not drinking all of the water but isn't hesitating to pee in the house if she feels the need.

Can I cut back on the water I offer? I don't think she'd be likey to dehydrate as she gets all the water she wants all day but my husband is worried she will.

Kathy

Harley PoMMom

04-10-2011, 12:28 AM

Please do NOT restrict her water. The elevated cortisol makes the kidneys work harder, thus the dog has to drink more.

frijole

04-10-2011, 12:32 AM

Sorry Kathy but never take water away from a cush dog... I know it isn't the answer you wanted but they need it. They drink because they pee not the other way around... Hang in there. Kim

Squirt's Mom

04-10-2011, 11:56 AM

Hi Kathy,

SUCKS but Macy isn't peeing because of the water she drinks. She will continue to pee regardless because the cortisol is making her. She has to drink to replace what she is losing - she is NOT peeing to get rid of what she drank.

This image is just hilarious and I apologize for that but they do make diapers that will help during this time. A Newf in a diaper! :p:p

Is is possible to confine her to one area at nite...maybe one that doesn't have carpet? Try putting peepee pads down there and maybe that will work...tho Squirt will NOT use them. :rolleyes:

And, then there is the waking up every two hours to take her out and hoping that is enough. ;):D:rolleyes:

Oh, the joys and fun of dealing with Cushing's! ;)

Hang in there!
Hugs,
Leslie and the gang

ktzndgs

04-16-2011, 06:07 PM

After her long holiday from Vetoryl we're restarting Macy on medications. She was already on lignans (though I had been giving her too much so that's reduced) and she's on melatonin. I might reduce the melatonin because I can see she's quieter than she had been. She weighs only 88 pounds now and takes 6mg twice a day. I'm told she should be able to take 9mg twice a day but not much is known about the interaction between Vetory & melatonin so I want to be careful.

Macy lost weight after that last dose increase back in February. I'm not sure why. I'm trying to get weight back on now. Since she's also been deciding that she'll no longer eat certain foods (no more fresh fruit or veggies, now turns her nose up at any fish and does not eat any sort of chewies anymore) and since we needed to mri her neck anyway we decided to do an mri on her brain as well. Won't have those results until Monday at best. I'm anxious.

Meantime I finally got to the health food store for more L-glutamine but can't recall how much to give! I thought it was 2000mg once a day but see an adult human can take twice that. Can someone tell me?

Also! I found a link (on this site?) to two articles about Cushings & Vetoryl at dvm.com. One article by Dr. John Hoskins and an interview with Dr. Feldman. Both were very interesting and worth looking for!!! He says trilostane is an excellent second choice lysodren for pdh Cushing's as long as it's started at a *very low* dose of .5mg/kg of body weight twice daily. He also recommends a *6 week* vacation between the drugs when switching! Yikes!!!! So both Feldman and Dr. Oliver recommend twice daily dosing with Vetoryl in smaller doses and both recommend long holidays between the two meds!

This disease is exhausting. Can anyone tell me why I'd suspect adrenal necrosis in my dog? I see it's a possibility w/Trilostane and I'd like to know what to watch for. I'll ask my vet as well. The vet who did Macy's mri was concerned that her heart rate was just 60 bpm as she should have been nervous. I can't recall her bp but I think it was something like 133/97. Her respirations at home the other night were about 12/minute. ??? I've seen it at 66 and she was breathing pretty heavily but that's when she was on prednisone. Her vet said pred can do that.

Thanks for listening! :)

Kathy

ktzndgs

04-16-2011, 11:16 PM

I'm guessing nobody noticed my question earlier. Can anyone advise me as to how much L-glutamine to give Macy? Do I give 2000 mg once a day or twice a day?

Thanks!!
Kathy

Harley PoMMom

04-17-2011, 12:22 AM

The dosage of L-Glutamine that I give to Harley is 500mg per 30 lbs once a day.

Love and hugs,
Lori

ktzndgs

04-20-2011, 07:37 PM

Over the weekend I tried to get Macy back on Vetoryl. We decided that this time we'd do a very low dose but it's apparently just not going to work out. She had very low doses Thursday, Friday, Saturday & Sunday morning. Sunday evening Macy ate her dinner and then vomited as soon as I gave her the evening dose of meds. I waited awhile and offered her food again which she happily ate. Monday morning was a repeat of Sunday evening. She ate her breakfast, I gave her the meds and she threw up. Once again I waited a bit and then offered food and she was happy to eat. She ate 4 meals that day without further trouble. I contacted her IMS and yesterday afternoon he informed me we'd have to stop all Vetoryl as it's just not going to work for Macy. (Peachy! I just bought two boxes of 10mg capsules!!!)

Right now Macy doesn't have any clear symptoms of Cushing's so I'm not feeling pressured to rush into anything. She's not panting, eating too much, drinking particularly excessively or urinating too much. Aside from that little bit of meds over the weekend she has not had vetoryl since March 21. The urination had been a problem last week and hit a sort of crisis point Sunday but I remembered that the last time that turned out to be a vaginitis so I used some monistat on her and it seemed to make her a whole lot more comfortable! She had actually started peeing in the house and that's stopped! I'll continue to give her the melatonin and lignans to try to keep her hormones in check but still need to get the cortisol levels down.

The vetoryl has been a struggle for Macy from the beginning. She did so well on the first dose of 120mg/day but the increase to 180mg per day really set us back. Then this last setback when they increased her dose to just 150mg per day really messed her up again. She stopped eating, lost 10 pounds, became so weak and lethargic it was upsetting. I'm disappointed that the vetoryl didn't work out but now we have to move on.

A question...... Has anyone else had their dog develop a very hairy face with Cushing's? Macy's face has gotten very wooly!

Does anyone know of an veterinary endocrinologist in Virginia? DC? Maryland?

Thanks!
Kathy

Harley PoMMom

04-20-2011, 08:55 PM

If it were me, before restarting the Vetoryl, I would of had an ACTH stim test done and the electrolytes checked.

Also many members give their pups either Pepcid AC or slippery elm 20-30 minutes before giving the Cushing medicines.

Please keep us posted and I hope Macy is feeling better.

Love and hugs,
Lori

ktzndgs

04-21-2011, 09:43 AM

I can still do that! She's off vetoryl again - only took a total of 120mg before I stopped - and I can request the stim for next Tuesday. Any particular time for the electrolytes to be checked? Why would I check electrolytes? It seems as though I've talked to them about checking electrolytes before but the test was really expensive. My regular vet only charges about $130 for the stim so that's not so bad.

We just went ahead and did an mri survey of her brain and neck and that sort of exhausted the budget. Her regular vet and I wanted to be absolutely comfortable that the problems we were seeing were not from a rapidly growing tumor. Turns out the tumor is still microscopic. Fantastic news! Equally as fantastic is the news that the neck mri did *not* find any abnormalities in her neck!

I was giving Macy pepcid until the intense stomach gas started. Then we added tums (never got a clear answer why tums would help) and eventually switched to prilosec and carafate and added gas-x three time a day. That's the period during which she stopped eating and lost 10 pounds so I'm not convinced pepcid or slippery elm will help. I'm more afraid of the gas than anything else. Terrified she'll bloat! She was not taking anything when the vomiting started.

I knew vetoryl could upset the stomach. Do you think the people at Dechra would talk to me? I was thinking about calling them to see if they have any ideas.

Macy feels quite a bit better now that she's off Vetoryl. That was really knocking the stuffing out of her.

Thanks for your input!
Kathy

Harley PoMMom

04-21-2011, 10:17 AM

Some dogs can go into a remission from the Cushing's, I know of at least 2 members whose dogs, while taking the Vetoryl, had to stop giving it because of their dog going into this remission phase. The ACTH stim test and Macy's clinical signs would tell you if Macy truly needs to be on any dose of Vetoryl right now.

As far as having her electrolytes checked, I think if it were me, I would have a full Chemistry blood panel done just to see where her kidney and liver enzymes levels are and to see if there could be any thing else that might be causing her inappetence and vomiting.

This is just my opinion/advice and hopefully others will give their opinions/advice as well.

Love and hugs,
Lori

ktzndgs

04-21-2011, 06:13 PM

We did a cbc just before the mri. They require it at the facility we use. All was fine. Her urine was also checked. The only thing that's been off recently is that the vet at the mri facility felt Macy's BP was high at 133/97 (I think) with respirations of 60 (or was it heart rate?). I forgot to mention that to my vet yesterday. Her respirations at home are 20/minute so 60/minute sounds high to me!

I'll talk to my vet on Monday about checking her cortisol levels to see if they're currently elevated. I don't want to medicate her if they aren't.

I'll be working with a homeopath beginning next week to start using homeopathy to support Macy. I want to see if we can increase her energy level, keep her stomach out of trouble and use homeopathy to enhance any Cushing's treatment we do. We'll see!

Kathy

ktzndgs

04-21-2011, 07:33 PM

Quick question...

When you all do the acth stim test does your dog have to stay with the vet between the two tests? Macy's is getting very upset about vet visits and I don't want to leave her if I don't have to.

Kathy

lulusmom

04-21-2011, 08:00 PM

To answer two of your questions, you most certainly can call Dechra. Many of us have spoken with Dr. Tim Allen, who is a vet on staff there. He is incredibly helpful and is willing to anwer any questions you may have. Dechra's phone number is (913) 327-0015.

My two dogs stay at the vet's office when they have stims done. Some vets prefer that you leave the dog there so that they get used to things and relax a bit during the hour between pokes. If you think Macy would do better if you sat with her in the car, tell your vet that's what you want to do.

Glynda

ktzndgs

04-21-2011, 09:05 PM

Oh! My IMS gave us the impression they wanted her to be stressed out during that hour. Hmmm. I'm just 5 minutes from my vet's office so I think I'll take her home! :)

Thanks for the info about Dr. Allen. I'm going to put a call in to speak to him about what's been going on.

Kathy

lulusmom

04-21-2011, 11:50 PM

I hope you are wrong about your vet wanting Macy to be stressed out for the stim test because stress can cause a false positive result. You want her to be as calm as possible.

ktzndgs

04-22-2011, 12:17 AM

Unfortunately I'm absolutely not wrong. That's what they told us. She had to be kept in a stressful situation during that hour. This is really bothering me. They're *not* supposed to be stressed? I can't tell you how much stress Macy was put through because she had to stay there for the post stim test. This is the IMS too, not my regular vet. I'm not happy. :( Are you sure? They've done it this way from the beginning!

Kathy

Harley PoMMom

04-22-2011, 12:49 AM

One's dog should not be stressed while doing the ACTH stim test.

The effects of stress on glucocorticoid secretion
Psychological and physical stresses stimulate the hypothalamus to increase CRH production which increases ACTH and cortisol production.

http://student.vetdoctor.ru/ftp/wendy/data/M04172.htm

The diagnosis of Canine Hyperadrenocorticism is not straight forward. General bloodwork and urinalysis results, though they may be suggestive, are not specific for the diagnosis of hyperadrenocorticism (aka "Cushing's Syndrome").The plasma or urine cortisol (or related corticosteroid) measurements are the most non-specific tests that, at best , are only suggestive for the presence of canine hyperadrenocorticism. Initially, therefore, more direct modalities for making the initial diagnosis should employ provocative testing and imaging studies.HOWEVER, having said that, It should be noted that many other illnesses...non-adrenal in nature... and even stress will interfere with the interpretation of most of the commonly used methods.

http://www.newmanveterinary.com/CushingDiag.html

The ACTH stimulation test will identify ~50-60 % of dogs with adrenal cortical tumors and
~85 % of dogs with pituitary dependent hyperadrenocorticism (PDH)3,4. Therefore, it is a good screening test if positive, but a negative result does not rule out hyperadrenocorticism. Of the screening tests for hyperadrenocorticism in dogs, the ACTH stimulation test had the highest specificity and thus the fewest false-positive results in one study5. That being said, an exaggerated response to ACTH stimulation is frequently seen in stressed dogs1. The degree of exaggeration is usually mild to moderate, but can be marked and in the range easily compatible with hyperadrenocorticism, making sound clinical judgement critical.

http://www.upei.ca/avc/files/avc/AVCDS_FAQ_Canine-Feline-AdrenalThyroid.pdf

Love and hugs,
Lori

ktzndgs

04-22-2011, 10:38 AM

I'll contact my regular vet Monday morning, bring this to his attention and arrange for a new acth stim test. We clearly need to have one done while she's reasonably calm. Of course, the minute we walk into the vets office she gets stressed so I can't avoid it completely.

While we're talking about this test let me ask.... Does your vet do IV or IM injections?

Kathy

lulusmom

04-22-2011, 10:47 AM

I don't think all vets administer the stimulating agent the same way but the good news is that if the vet is using cortrosyn as the stimulating agent, it doesn't make a difference. The results should be the same.

ktzndgs

04-22-2011, 11:51 AM

Ok. So now I know to ask. :/ Gotta remember to ask about everything anymore!

With Macy being so sick I continue to learn to ask questions here and of my vets and leave nothing to chance if I can but I'm kind of confused about the variety of opinions about how to do stuff. There's a link to a video in the resources section with a vet (Bruyette) saying the starting dose for trilostane is 5mg/kg of body weight administered once a day. Macy would have started off on 200mg if we'd done that and it would have killed her. In doing my homework the recommendations go down from there to Feldman saying .5mg/kg of body weight administered twice a day. Then there are those who believe acth stim is the way to go with diagnosis with others saying it's not an effective test. I also found an article this morning written by a vet who claims the dog should be fasted before the test! Why?

Jeepers!!

Kathy

StarDeb55

04-22-2011, 12:07 PM

Kathy, I know all of this gets terribly confusing with the differing opinions. The one thing I can offer is that the the technical reps, specifically Dr. Allen at Dechra, are now verbally recommending a starting dose of 1 mg/lb. The consensus also seems to be that it's better to start on a lower dose, & work up, rather than the opposite.

I'm going to post a link to Dr. Mark Peterson's blog for vets. Dr. Peterson is one of true experts in endocrine disorders in this country. Once you get to the blog, click on the link on the right side for Cushing's disease to view all of his posts. There is one post for 2/26/11 that explains which is the best test to use to make the diagnosis, & it's not an ACTH, but I will let you do the reading.

http://endocrinevet.blogspot.com/

The thing about doing the testing on a fasting specimen is that a non-fasting specimen may have a lot of lipid (fat) in the sample which may interfere with lab analyzer that is doing the test. This type of interference may cause an inaccurate result.

Debbie

ktzndgs

04-22-2011, 01:02 PM

Aha! Thanks Debbie! I'll get busy reading again. :)

Kathy

labblab

04-22-2011, 02:05 PM

Hi Kathy,

I know it's been a while since I've posted to you, but I quickly wanted to add a couple of comments. The first is that, even though there are indeed occasions when vets (or doctors) request that patients fast before blood draws, dogs who are being treated with trilostane definitely SHOULD be given a meal along with their morning dose of medication prior to any monitoring ACTH test. Otherwise, the results will be misleading because the drug will not have been metabolized efficiently. This is per Dechra, and also per the same Dr. Peterson that Debbie has cited above. Here's a related link:

http://endocrinevet.blogspot.com/2011/03/whats-best-protocol-for-acth.html

I know that right now Macy is not taking trilostane, so this info is a moot point. But in the event that she does ever start back, and for the benefit of other readers who are actively treating, I just wanted to clarify the above.

I also want to add that, although neither Dr. Peterson nor Dr. Feldman appear to be fans of the ACTH as a diagnostic test, there are other experts who do continue to endorse the ACTH, especially in certain specific situations. So you are exactly right, there is a difference of opinion about this issue just in the same way that there is not solid agreement about dosage levels and dosing intervals. I wish things were simpler and clear-cut. But Cushing's is a disease with a lot of questions marks, all the way around. The best thing we can do as owners is read, read, read (which you are doing). And that way we are armed with greater knowledge when we talk with our vets about the various options and decisions that relate to the specifics of our own dog's situation.

Marianne

ktzndgs

04-26-2011, 11:32 PM

I was in a conversation the other day with folks talking about older dogs losing coat. Since my vet gave melatonin the credit for Macy's coat coming back I wondered if you could give melatonin to an older dog hoping to bring it's coat back. Would it be safe? Does anyone know?

This all came up because in all of the reading I've been doing I saw something that said a dog can actually begin experiencing symptoms of Cushing's 1-6 years before diagnosis. Macy was 7 when she was diagnosed; she's been stealing food for as long as I can remember and when she was about three I noticed that the fur on her front legs was weird. It looked like everything from her wrists on down was being rubbed off. Now she's got nice thick fur on her legs!

Thanks!
Kathy

lulusmom

04-26-2011, 11:52 PM

Hi Kathy,

Dogs with cushing's don't usually lose the hair on their head, legs and feet so I don't think the hair loss on Macy's front legs was due to cushing's.

A good number of our dogs are senior and take melatonin and I don't think it would hurt your senior; however, you should always check with your vet first.

ktzndgs

04-27-2011, 10:39 AM

I wish you could see the before and after of Macy's feet. It's pretty amazing. About the hair on her head - she didn't lose any hair on her head with Cushing's - she gained it! She had normal face hair before, now has a very fuzzy face. They refer to the werewolf effect on the faces of human's with Cushing's so I wonder if that's what's going on with Macy.

Kathy

ktzndgs

04-30-2011, 07:17 PM

What is going on??? Macy had an acth stim done on Thursday. I stayed with her for the blood test and for the injection, took her home afterward and then brought her back an hour later. The results are in. Her pre-test number was 4.2, her post-test number was 5.4. One of the other vets called to give me the results and said, Great news! She's normal! Only problem is I've got a dog drinking water by the gallon and peeing like there's no tomorrow. Her appetite is good, her rear legs are weak, she's mentally alert.

We were going to start lysodren this weekend but given the numbers it seems like the wrong thing to do so I'm holding off until Monday.

We're 3 weeks post vetoryl. Does this mean there's still vetoryl in her system? It's just too soon for lysodren? And to think we did the acth for my peace of mind only.

Kathy

Harley PoMMom

04-30-2011, 07:57 PM

Hi Kathy,

If Macy is urinating a lot and drinking copious amounts of water then I would get her checked for diabetes or an UTI.

A wash-out period is very important when switching from one medicine to another. Dr. Allen, vet-tech from Dechra, suggest a wash-out period or the dog having an ACTH post stim of 12 ug/dl or greater plus clinical symptoms.

Hope this helps.

Love and hugs,
Lori

ktzndgs

05-01-2011, 12:20 PM

Just to remind Macy was off Vetoryl for 3 weeks before restarting on an extremely low dose which she was on for just 3.5 days. Then she started throwing up every time she took vetoryl and it was stopped. Since then she's been off vetoryl for another 3 weeks. It really does seem as though whatever was in her system should be gone by now.

As of this morning she's added loose stool to the pu/pd (water in/out), she's doing the "looks like a UTI" thing and also threw up awhile ago. When she looks like she has a UTI it's normally vaginitis so I cleaned her up and used some monistat but it's not working this time.

What happens when a dogs electrolytes get messed up?

I'll be in touch with my vet first thing tomorrow about all of this and to have Macy checked for diabetes. Unfortunately, she'd be my third diabetic pet so I have test kits and wonder if I should bother to test her. I'm not familiar with diabetes in dogs and don't know what I'd do w/the information anyway.

Kathy

Harley PoMMom

05-01-2011, 12:28 PM

Some dogs do go into a remission phase when being treated with Trilostane/Vetoryl, this has happened to a couple members of this forum.

When the dog's electrolytes become unbalanced, the dog can adverse symptoms such as lethargy, vomiting, diarrhea, anorexia. This would be a serious illness that needs emergency medical treatment.

We have a sister forum that deals with canine diabetes: http:///www.k9diabetes.com/forum/. If Macy does end up having diabetes I suggest that you join there.

ktzndgs

05-03-2011, 06:26 PM

Macy was tested for diabetes and she is not diabetic. Her vet says that barring a surprise in the urine culture what we're seeing is simply her Cushing's symptoms showing in spite of the numbers. He wants me to hold off on giving any lysodren for as long as we can stand it and we will but I have to tell you this is difficult!

Kathy

zoesmom

05-03-2011, 07:30 PM

Hi Kathy -

Just reading thru your latest posts and have a couple of thoughts. So the acth was done after Macy was off the trilo for 3 weeks, right? And her numbers came back at 4.2 and 5.3. That to me might indicate that she was too low when you first stopped the drug because of her reaction. A handful of dogs do become addisonian on trilo (I guess from adrenal necrosis, like with lysdren) so maybe she was addisonian then - or at least borderline. Otherwise, I think you'd expect her numbers to have climbed higher during the weeks she was off the med. So when you restarted, it sounds like she was only taking 30 mg sid??? In a dog who has gone too low, even that may have been enough to push her back towards an addison's state. If so, then the electrolytes should probably be checked. It's my understanding that it's a fairly cheap test. In fact, many vets check electrolytes with each acth test which is done. If those electrolytes are off, then that is something that should be addressed first. I think they check sodium, potassium and something else???

On the other hand, since she's been off the drug most of the last 6 weeks, I'd also be suspicious (based on her symptoms) that maybe it IS a uti. Sounds like you're waiting on the urine results now? That would be the simple explanation and one that is easily dealt with. One other thought comes to mind. Increase in drinking and peeing can also be caused by diabetes insipidus. This is not the 'other' more common diabetes. Those are it's only symptoms and treatment is optional. If the excess drinking/peeing is manageable (not a problem for you and the dog), it doesn't have to be treated as long as you make sure they always have plenty of water available. This was what I suspected Zoe had. She'd drank like a fish her whole life (with the resulting peeing a lot) and it didn't resolve completely when she started the trilo. It is possible to have DI in addition to cushings. And we've had a few dogs here who've had the ongoing 'drinking/peeing problems' after their cortisol was under control. In those dogs, it can be a sign of DI. The test is a water deprivation test and must be done at the vets and takes several hours. Probably not good for Macy and her stress issues. However, the more recent thinking among some vets if a dog is suspected of having DI, is to simply try the medicine on them and see if it helps. I believe it's given nasally, but I recall that it's not all that cheap.

But with the vomiting and the loose stools, I would think that electrolyte test would be important. I guess Uti's can sometimes cause them to become really sick - like with vomiting. Not sure about loose stools. Has she started any new meds or supplements that would cause the upset tummy issues. It's always a good idea to only start one new thing at a time, in case there's such a reaction.

I know this is lots more to think about; however, the one thing I can say for sure is that I would not be starting ANY cushings drugs just yet. I would hold off on that until her numbers are back in the mid-teens or higher - signalling a definite return of cushings. If she is in remission, that could take weeks or months or never. I just don't feel like the symptoms she's having right now are cushings symptoms, given those last acth numbers. Sue

zoesmom

05-03-2011, 10:47 PM

So I've been thinking some more about Macy and the increased drinking. That can ALSO be a symptom in addison's. And if she was extremely stressed when she was in for the acth, a full 3 weeks later, perhaps those numbers reflected that stress and her numbers were running much lower when she was at home and calm. That would make me more suspicious that maybe she was addisonian (or very close) when you first stopped the trilo 6 weeks ago.

If it were me, I'd want those electrolytes checked, just to be sure. It wouldn't make sense to do another acth at this point - especially if the stress is a big factor for her. Unless maybe your regular vet can do one and you can take her somewhere else during the 1 hour wait for the 2nd draw. But I suspect that the stress will always be a factor in her numbers, regardless.

With the vomiting, loose stools, inappetance, and excess thirst - those all could suggest that she's still borderline with low cortisol. And if that's the case, maybe she needs some prednisone and possibly an additional medicine (either percoten or florinef) for counteracting that situation. Perhaps she's not quite in a crisis state at this point but just running on the low end of cortisol production (except when she's so stressed at the vets and her cortisol production steps up a bit). In that case, prednisone might be enough to perk her up right now. I'm not sayin' this is the case, but it is one possible explanation. If her cortisol is truly on the rise, then her symptoms should start to improve as the cortisol climbs higher. In that case, she'd would probably start to feel pretty good and normal for awhile and then as the cortisol continues to rise, the typical cush symptoms would gradually return.

If Macy is in remission (say, if her cortisol went pretty low but not to the point of crisis), then there's no way to know how long it'll be before the cortisol production gets crazy again. We've had a couple dogs here who remained in remission permanently and others who were off their meds for months or a year or longer before their cortisol climbed high enough to warrant putting them back on medicine (to me, that would be numbers similar to what a cush dog would show on a diagnostic ACTH. Like at least a 17 + or else a strong return of cush symptoms.) And I would still want another acth before restarting with either trilo or lysodren. Sue

Here's some links that explain addisons and electrolyte imbalances:

http://www.vetrica.com/care/dog/addisons.shtml

http://www.suite101.com/content/addisons-disease-in-dog-a27528#ixzz0oA04qruG

"Most cases of Addison's Disease are less dramatic, and usually follow a waxing and waning course. This means that there are often long periods of normality between episodes of illness of a fairly vague nature. Any or all of the following symptoms may occur:
Occasional vomiting and diarrhoea, possibly with some weight loss accompanied by loss of appetite and increased thirst."

ktzndgs

05-04-2011, 12:17 AM

Argh!!! I got so far into this and it somehow got lost.

Macy's symptoms of vomiting and loose stool stopped the day they started. Vomited twice, one loose stool. It's like this with her. Things change by the hour. Her appetite has been good for a few weeks. Based on what I've read about electrolyte imbalance, we're not there.

Please be patient with me and very clear. I've also got a young dog in the house and another senior and all are demanding something. Sleep is scarce with Macy & the pup and it's hard to stay with it in long emails. The pup had to be allowed to sleep outside her crate last night (long story) and spent a good bit of time trying to decide what space she should call "hers". :)

Are you saying that in spite of her not vomiting, not having loose stool but still having pu/pd and an acth that's not crazy that she might have or be teetering on addisons? On the surface all I see is that she's just just drinking too much but there's more potentially going on???

For the last acth (done last Tues/Wed?) she was fine. There was no stress other than walking into the vet because I kept her w/me. She's seen so many vets over the past 16-18 months she does get stressed by vets and techs. She no longer socializes at the vets.

Kathy

zoesmom

05-04-2011, 11:47 AM

Kathy -

.Are you saying that in spite of her not vomiting, not having loose stool but still having pu/pd and an acth that's not crazy that she might have or be teetering on addisons? On the surface all I see is that she's just just drinking too much but there's more potentially going on???

Kathy

Well,, that's kinda what I was thinking and maybe she was for awhile but , now, if her appetite has improved and the vomiting and loose stools have resolved, then I agree. She's probably not teetering and, in fact, her cortisol is probably slowly rebounding. I do feel like maybe she was on the brink when you stopped the trilo a few weeks ago because, given the time that passed, I am surprised her numbers hadn't risen more after 3 weeks off the med. And that would also explain why those few low doses that you tried later made her sick again. So perhaps it'll be weeks or even months before she's to the point where she needs to go back on cush tx. But it doesn't sound like 'teetering' if she's feeling better now.

Still, I don't think the pu/pd is coming from the cushings (cortisol level), with those last ACTH results. I don't think you'd see that symptom until her cortisol level gets higher. So with DM ruled out (when was that tested - recently?), the question is.....is it uti, DI, or something else? It sounds like it's a problem - interferring with your sleep to let her out, etc. If her urine comes back clean, then I'd be more suspicious of DI. When did the pu/pd get bad - or is it something that never totally resolved when she went on the trilo originally?

I agree with what the vet said. Tough it out w/o any cush med for as long as you can stand it. However, I would strongly suggest doing another acth before any reintroduction of trilo or lysodren. I wouldn't just wing it, based simply on her symptoms of pu/pd. When she was first diagnosed, was her appetite voracious? And what other symptoms did she experience then? When all of those original symptoms start to become full-blown again, that's when I'd do another acth test with an eye to restarting tx. In the meantime, you rule out the uti (the obvious) and the DI (if the pu/pd is really annoying) while you wait. Sue

ktzndgs

05-04-2011, 03:07 PM

First of all, thank you for going back over my posts to read about what's been going on. I appreciate the time investment. I'm going to do the same here to see if we're on the same page and hopefully fill in any blanks.

Ok. I see. The problem with Macy (as I mentioned) is that the situation is so doggone fluid! It seems the words are barely out there when everything changes.

In early February an acth was done giving us a pre-test of 4.0 and a post-test of 3.1. Remember! The IMS always had me drop her off so she'd undergo the test while very stressed so that 3.1 post number was a stressed dog who was at a vet facility. She did not have another acth until April 28 and that was done by my regular vet. I took her in, he drew the blood and injected the "stuff". I took her home and we returned an hour later. At that time she was 4.2 pre test and 5.4 post.

Macy stopped trilo March 21. I agree that by this time she she was in serious trouble. She was very weak, had problems eating and eventually stopped eating, paced, was dropping weight, was displaying signs of some sort of stomach pain that the vets wanted to blame on spinal problems, and just wasn't interested in much. Sometime between March 21 and April 13 the pu/pd started again.

By April 13 she was down to 87/88 pounds. On April 13 she had the mri and on the 14th was restarted on Vetoryl on a ridiculously low dose. I didn't have the right dose sizes on hand so, though my IMS wanted her to take 40mg twice daily I gave her a much lower dose. That only went on for a couple of days because the following Sunday she threw up w/i 20 minutes of the Vetoryl. The next morning was a repeat with the added soft stool so I stopped the vetoryl as it was clear to me that it wasn't a stomach problem but rather a reaction to the vetoryl. She's had no vetoryl since that morning, Monday, April 18.

At some point amid all of that I recall my vet having me give Macy a prednisone. She was drinking too much but he said to give her a 20mg pred. (Lack of sleep plays havoc with my memory.)

Since stopping Vetoryl Macy's general attitude has improved. Her appetite is strong and she's more mentally alert but the Cushing's-like symptoms of pu/pd and weakness are still there. My vet feels that once we get her on lysodren those will all self-correct but he said the lysodren dose will have to be very low.

Aside from the pu/pd she still seems to have some sort of discomfort in her belly (which has undergone two ultra sounds!). We still hear an umph! when she lays on a hard floor. I'll get a copy of the urinalyis later but the vet said her glucose level was normal. He said diabetes would show up there. Is there another way we should be looking for diabetes?

Kathy

zoesmom

05-04-2011, 08:01 PM

Kathy - Not an expert on diabetes (DM) but I think it's usually ruled out via blood glucose level. Not sure if they can diagnose properly from just the urine but someone here will know.

That Feb. test was what we call non-stimulatory (post # lower than pre #). Probably she needed a break when she had that non-stim result in Feb and that's why she ran into trouble in March. It's too bad they didn't do another acth in March when she became sick. Because we can only assume that her cortisol was low then. How low, we don't know. Did the prednisone seem to help her?

At this point, it's a crap shoot. Perhaps another acth in about a week or two would tell you more. Like if her cortisol is rebounding rapidly or slowly. The pu/pd, as those links I gave mention, could have been from too low cortisol (as opposed to too high cortisol). And with her other symptoms and her earlier non-stim acth result, that could all suggest she was too low for awhile. But that's kinda moot now since she's feeling better and most of her symptoms are improved.

The thing that concerns me most is putting her on lysodren too soon. I can't stress enough that it's important to make sure that her cortisol really is on the rise to cushings levels before switching to lysodren. I hope your vet isn't just guessing about what dose to use and when to start it. If she were my dog, I would want confirmation that it is safe to start her back on a cushings drug. In other words, thru an acth. Her results on April 28 do NOT indicate that she is anywhere near ready to start up tx again. Like I said earlier, to be safe, her acth #'s should probably be at least in the upper teens before starting lysodren. A conservative dose might be better but if her starting dose is too low, it won't do anything at all. (50 mg/kg is at the top of the lysodren dosing range . . . 25 mg/kg is at the low end.) Is the vet talking about doing a loading dose of lysodren or something less than that?

One question. Was she getting her trilo with food? It should never go into an empty tummy - even on the day of an acth. And I'm still not convinced that her current pu/pd is from her cushings. Unless her cortisol has jumped dramatically since April 28. But you say that the pu/pd returned well before that test. If it were me, I'd wait a week or two or three and do another acth and if her smptoms continue to come and go, probably an electrolyte test, too. Hope other members will add their thoughts as well. Sue

The diabetes insipidus (DI) can't be diagnosed via blood or urine. This type of diabetes has nothing to do with glucose levels. It's only symptoms are pu/pd and very dilute urine. And if you can live with that, it doesn't even have to be treated. Diagnosis is strictly thru the water dep test or by trying the treatment/med. How much does she actually drink in a 24 hour span? Normal is about 1 oz./lb. or about 1 c. for every 10 lbs of wt. So for Macy, normal would be about 6 - 9 cups/day - give or take. Can you separate her bowl from your other dog to measure her actual consumption? And was her recent urine specimen pretty dilute - like below 1.015. Zoe's used to run as low as 1.004 and even on trilo, she was still drinking 10 - 14 c./day (until we put her on tylan for the IBD and SIBO and then her water consumption dropped virtually overnight and stayed at around 4 - 8 c. from there on out.) I kept a journal and measured her water intake daily, for months. Just to confirm what I suspected about her drinking.

ktzndgs

05-04-2011, 08:54 PM

If someone can tell me how to check blood glucose I can do it here. I have a test kit & have had 2 diabetic cats so it's something I can do.

I promise I won't start lysodren w/o an acth test that indicates it's appropriate. My vet's being great about listening to my concerns. He insisted that I *try* to wait 2-3 more weeks.

She will be started on a small portion of the maintenance dose. I spoke to Dr. Oliver about that and he said some are having great success doing that. Her starting dose would be 500mg/day, twice/week. I think he'd also prefer that I give her 250mg each time rather than 500mg.

Yes, she always got trilo with food and for much of the time also had pepcid on board.

Macy's water intake is pretty huge. She weighs 88 pounds. I can't imagine what she goes thru in a day. We probably fill the 4 cup bowl 8 or 10 times a day more more? Now I'm concerned because specific gravity was 1.013 on 4/8 and 1.007 on 5/2 so it's going down but that's not first morning urine.

My regular vet is gone for the balance of the week. I'll call for an appt to talk to his fill-in about checking her for DI. He kinda had his mind set that she didn't have it.

Kathy

BestBuddy

05-04-2011, 11:25 PM

Hi Kathy,

You already know how to use the meter so you just need to get a fresh drop of blood.

There are many places do do this and each dog will have a spot that works better than others. I used the inside of the lip but many others use a leg callus or even the base of the tail.

I just curled Buddy's upper lip at the side just over the canine tooth and poked about the middle with the lancet and then when I got a bead of blood put the test strip on it and away you go.

Jenny

ktzndgs

05-05-2011, 12:22 AM

Do you test at a particular time of day? Before or after meals? Feed and then wait an hour or so? Or is pre-food best? I've only tested cats on insulin.

Thanks!
Kathy

BestBuddy

05-05-2011, 04:45 AM

Hi,

Just doing a check to confirm diabetes I think could be done at any time of the day. Normally a non diabetic will go up and down but should be within the 4-6 (72-108) range.

Just one high reading would not mean Macy is diabetic but it does mean you need to do more investigation on why the BG is elevated.

Good luck.

ktzndgs

05-05-2011, 01:47 PM

Macy had a blood test two weeks ago and I now have copies. Her bg at that time was 101 and her urine was negative for glucose so I'm going to leave it at that and accept those results. For now anyway.

Now I'm trying to get my ducks in order. I'm getting worried enough that we've been squeezed in to see a vet this evening so they can either talk me down from the ledge or help me make a plan to go forward and find out what's wrong. I'm gathering my key points.

- Macy's water intake/outflow is worse than it was when she was first diagnosed with Cushings.
- Nighttime water intake was 1.5 quarts back then but she never lost control more than once at night. Now I get up 2-3 times during the night for her to go out and if I don't she'll pee that many times in the house. If she doesn't get every drop of water she craves she drinks everything she can find when we get up and put more water out and then pees gallons.
- Her appetite is strong
- She's mentally alert but sleeps a lot
- She does appear to have another vaginitis of some sort
- specific gravity of her urine declined over the past two tests
- The last urine test showed bacteria at 10-25 Rods, ref. range None
- The last acth stim gave us numbers that make her appear normal BUT I keep reading that the acth stim test is not the final word for pdh cushing's and is better at diagnosing iatrogenic cushings. Now i'm considering asking for either a low dose dex test *or* for another blood sample to be sent to UTK. Not sure which would be better.
- Everything I'm reading tells me I can't pursue a DI diagnosis until we're positive Cushing's isn't driving this. And then I won't do the water deprivation test. There's something else you can do that I read about today and if we have to I'll pursue that.
- alt was elevated at the last blood test but not too bad. It was 318, ref range 12-118.

Is there anything else I need to consider? I'm trying to make sure I look at the big picture and bring all facts that need to be considered to the table so we stop running around in circles. The pu/pd she's currently experiencing could still be from Cushing's if the acth gave bad results and I'm trying to keep that in mind.

Last of all is there something I'm doing that's causing the insane water intake at night? After getting up in the morning and drinking every drop of water she can find she pees and then settles down for a few hours of sleep. I'm realizing my daytimes aren't as crazy as the nights. Why? Are the Costco dehydrated chicken jerky's causing this? I think we'll stop having them as treats!

Kathy

labblab

05-05-2011, 03:14 PM

Hi Kathy,

I know I haven't had the chance to talk with you recently, but I do want to offer a response to your question about testing. I don't think a LDDS would be of value to you in this situation. It is used strictly as an initial diagnostic test for Cushing's, and does not have any value in terms of monitoring cortisol level in conjunction with treatment. Macy's original diagnosis of pituitary Cushing's was based on bilaterally enlarged adrenal glands and an abnormally elevated diagnostic ACTH. (And a "positive" diagnostic ACTH is actually more trustworthy than is a "positive" LDDS). And now, with several monitoring ACTH tests also under your belt for comparison purposes, I do believe you need to stick with the ACTH as far as future treatment determinations. I don't have a strong opinion one way or the other regarding repeating the full UTK panel in conjunction with the ACTH. But since you are planning to switch to Lysodren anyway, most intermediate elevations (other than perhaps estradiol) should be lessened by the Lysodren, regardless.

I'm bothered a bit, though, by Macy's belly pain. When was her last ultrasound performed? Was she experiencing the pain at that time? And am I correct in remembering that she has been diagnosed with IBD? Also, have her kidney indicators on her bloodwork always remained normal (creatinine, BUN)?

As far as the jerky, does it contain a lot of sodium? If so, I'd think that could result in excessive thirst. Also, in the case of any human food product, you need to be extremely careful that onions in any form are not included in the ingredient list -- onions can be extremely toxic to dogs.

Marianne

ktzndgs

05-05-2011, 04:46 PM

Thanks for getting in touch Marianne. I just spoke to the vet on the phone. These folks are being so good to me. She's working with me by phone rather than asking me to come in.

This is a woman I use to sub for my regular vet and I think she's very good. I also think it helps to have two heads working the problem. She's pretty sure this is all being caused by diabetes insipidus. I don't want that to be but she's pretty sure it is. She's ordered the eye drops so we can try it to see if it helps and meantime I'll move to the first floor with Macy and will simply set my clock so I can keep refilling her water bowl and letting her outside during the night. It seems at odds but I think if she has more water during the night she'll do better because she won't overload when she has access.

From what I've read about DI and from my past experience with a diabetic cat I'm concerned that the pancreas can become a problem with DI. That might be what's causing Macy's belly discomfort and nobody's picked up on it yet.

You're correct that Macy has IBD. It's eosinophillic IBD. Her last ultrasound was in January and all was fine at that time but she was experiencing those bouts of belly pain. Last July Macy started having bouts of pain where she arched her back. The vets said that was her spine. I say it was her belly. Those episodes haven't returned since we stopped vetoryl but she still does that umphing when she lays down periodically.

The sub vet said the same thing you did. It won't help to do the ldds test now. She believes Macy is in remission and the DI is what's causing the problem. I sure am glad I only bought 8 of the lysodren pills instead of the 32 the vet prescribed. :( I'm tired of buying medication we don't use!

My dogs never have onions unless they steal them from the trash. They no longer even get tomato sauce! The chicken jerky's are just dehydrated. Speaking of things dogs shouldn't have, what's with all the sugar in dog treats these days??

I'm almost relieved but sad that my poor girl is going through all of this. She's such a complete sweetheart and I can see she's upset. My Princess. I really would love to dance with her again. I know the freestyle world misses her. :(

Kathy

ktzndgs

05-05-2011, 05:08 PM

labblab

05-05-2011, 05:48 PM

I wanted to join the diabetes forum to find out about DI and the treatment but I can't see all of the letters/numbers in the image verification field. Can anyone help me??? I can't even see them to contact the administrators to ask for help!

Kathy
Kathy, although the folks on the k9diabetes.com (diabetes mellitus) forum are wonderful :), I do not think you will find out much about diabetes insipidus there. The two disorders are totally unrelated. Also, DI is not related to the pancreas, either, so that may be one worry that you can eliminate. Here's a link that may be more helpful to you. I see it was posted in 2002, but I'm guessing that the info is still accurate:

http://www.petdiabetes.com/pdorg/diabetes_insipidus.htm

Marianne

P.S. I want to add, however, if you or anyone else who is interested in joining k9diabetes.com is having trouble registering, you can email the site administrator at k9diabetes@gmail.com.

ktzndgs

05-15-2011, 04:25 PM

As you may know Macy is being given desmopressin for possible diabetes insipidus. Symptoms were pretty extreme pu/pd, lethargy and weakness. She's been on and off the desmopressin this week (long story) but has finally had two doses in a row. :)

Now..... As I mentioned she was drinking way too much and I'm concerned the weakness and lethargy could be from an electrolyte imbalance. I'll be in touch with my vets in the morning re checking her levels but meantime can I give her pedialyte to try to balance the electrolytes? I'm positive I've had a vet tell me to do that in the past but don't want to make her sick.

Kathy

lulusmom

05-15-2011, 06:50 PM

Hi Kathy,

Can you tell us why you think Macy's electrolytes are off? Do you think she is dehydrated? If so, you can actually check her hydration yourself. See the link below.

Read more: How to Check a Pet for Dehydration | eHow.com http://www.ehow.com/how_2061064_check-pet-dehydration.html#ixzz1MSShpX2a

ktzndgs

05-17-2011, 12:02 AM

I'm not sure. Maybe it's wishful thinking. There has to be a reason why she feels so bad and it's hard to keep her hydrated with the Diabetes Insipidus. As I said, she's been lethargic and, even though her numbers no longer support Cushing's, she's weak.

We did an mri of her brain and I now have the report. They're using words like macroadenoma now so I wonder if that's the cause of the problems. The pituitary gland is 1.8cm x 2.0cm x 2.5cm. I have no idea if that's large or small. I haven't gotten to speak to a vet about it yet. I'm just here, worrying.

Does anyone else here have a dog with a macroadenoma and DI? Is this a large or small macroadenoma?

I forwarded the mri report to the IMS late Friday and hoped to hear from him by now but so far no word.

Kathy

Timmy's Mom

05-17-2011, 12:16 AM

The specialist at Iowa State that worked with my sweet Timmy told me it was absolutely safe to give him pedialyte. It is the one thing my sweet Timmy loved when he wasn't eating or drinking.

My thoughts and prayers are with you and your sweet baby.

Kathleen

labblab

05-17-2011, 08:06 AM

We did an mri of her brain and I now have the report. They're using words like macroadenoma now so I wonder if that's the cause of the problems. The pituitary gland is 1.8cm x 2.0cm x 2.5cm. I have no idea if that's large or small. I haven't gotten to speak to a vet about it yet. I'm just here, worrying.

Hi Kathy,

I'm sorry to read this news about Macy's MRI report. I do not wish to worry you unduly, and of course you need to receive your vet's feedback in order to have a definitive diagnosis. But since I believe that my own Cushpup suffered from the effects of an expanding macroadenoma (although we didn't have the chance to perform an MRI), I do have some familiarity with the issues :o. And unfortunately, Macy's lethargy and weakness could be explained by such a tumor.

So that you'll be better armed to talk with your vet, here is a link to a set of articles that discuss the diagnosis and treatment of macroadenomas:

http://www.k9cushings.com/forum/showthread.php?t=229

From what I have read in those articles, it does seem as though Macy's tumor is of a size that could indeed be responsible for the behavioral changes you are seeing. And although DI is described as an uncommon symptom, apparently it too could be related. Here is a symptom summary that I have taken from the article by Dr. Feldman:

The signs we have observed in >50% of dogs with enlarging pituitary tumors (from most common to least common) include dull behavior, listlessness, inappetence to anorexia, apparent disorientation, aimless wandering, staring, and pacing. Some of these dogs appear to be ataxic. Head pressing, circling,urinating and/or defecating in the home, and grand mal seizures are much less common, occurring in less than 20% of affected dogs. The least commons signs appear to be diabetes insipidus, specific cranial nerve deficits, aggressive behavior, thermoregulatory disturbances, or blindness.

Traditionally, the available treatment for canine macroadenomas has been a series of conventional radiation treatments aimed at reducing the size of the tumor. A very few facilities in the U.S. are now offering cutting-edge surgical/laser intervention. We have had members on this forum who have experienced each type of treatment with their dogs. But I am putting the cart ahead of the horse. As I say, you will need to await further word from your IMS. But I just wanted to make this resource information available to you in the event that your vet concludes that a macrotumor is indeed an issue for Macy.

Marianne

Squirt's Mom

05-17-2011, 09:45 AM

Hi Kathy,

I, too, am saddened by the use of the term "macroadenoma". :( Marianne has given you the link to some great info and I have some more links if you are interested.

Please let us know what the vet has to say and know many prayers and positive thought are with you.

Hugs,
Leslie and the gang

ktzndgs

05-18-2011, 07:14 PM

Macy's IMS has recommended that we do radiation for Macy's macroadenoma. He said they normally do 10-15 fractions (???) over one to two weeks. Thisis all new to me so I have no idea yet what he's talking about. My husband did some research and has suggested we need to check out the idea of cyberknife surgery. I'm in Virginia but there's a place in NYC that does cyberknife surgery on dogs. I don't know if it's appropriate for pituitary tumors. Also, CedarsSinai has trained veterinarians in CA to use something called the VITOM. I have no idea how I'd pursue that idea.

If any one here has had a dog diagnosed with a macroadenoma and has done radiation please get in touch!

Kathy

lulusmom

05-18-2011, 07:46 PM

We do have members whose dogs have gone through successful radiation but I'm not sure any are actively posting here at the moment. One of our member's (Gina) dog, Lucy, was in the clinical trials at Cedar Sinai and her transsphenoidal hypophysectomy was a success. Unfortunately she passed away, I believe from cancer unrelated to this surgery. Here is a link to her thread:

http://www.k9cushings.com/forum/showthread.php?t=534&highlight=lucygoo

Dr. David Bruyette was Lucy's specialist, and I believe he may still be actively involved with the human surgeons at Cedar Sinai who were training veterinarians on transsphenoidal hypophysectomy. He has played a pivotal role in this research. Perhaps you may consider contacting him to discuss Macy's case. You have nothing to lose and he may not be able to offer surgery but he can probably tell you which procedure would be best for Macy and maybe give you a referral to a facility near you. Here is a link to Dr. Bruyette's contact info:

http://www.vcahospitals.com/west-los-angeles/our-team/veterinarians.html

labblab

05-19-2011, 09:06 AM

Kathy, as Glynda has said, I do believe that Dr. Bruyette would be a great resource. Additionally, here's a veterinary neurologist who practices in Maryland who might also be helpful to you:

http://www.vetneurochesapeake.com/index.php?page=dr-jay-mcdonnell

He was brought to our attention by another member who was familiar with his interest in performing pituitary surgery:

http://archive.constantcontact.com/fs061/1102570619537/archive/1103301673002.html

In addition to overseeing his own clinic, Dr. McDonnell is now a neurological consultant to UPenn's Veterinary School. The pituitary surgery that is referenced above probably is not designed to treat macroadenomas such as Macy's, but I would expect that Dr. McDonnell would be very knowledgeable about treatment options that would be available to you in Macy's situation.

Later today, I will try to add some links to threads of members who have undergone conventional radiation treatment for macrotumors. It is not a minor undertaking, by any means. So it is something that you will want to be well informed about prior to making a decision. My husband and I did not opt to pursue radiation treatment for our dog. But we have had some other members here whose dogs have undergone treatment and had the benefit of extended relief from the neurological problems. Probably the chief downside to conventional radiation has been that the dog must undergo general anesthesia for every treatment. Historically, approx. a dozen treatments have been spread over the period of a month's time period. But if your vet is telling you that the radiation would all be performed within the space of 1-2 weeks, this is a newer protocol, and perhaps other aspects are different about it, too.

Also, we have had one other dog who underwent a single cutting-edge cyber-knife type pituitary procedure (performed at Washington State Universty). Unfortunately, that dog soon experienced cognitive issues stemming either from regrowth of the tumor or residual damage from the treatment.

I'll try to get back with those links as soon as possible.

Marianne

ktzndgs

05-19-2011, 10:54 AM

Thanks! I knew about Dr. McDonnell but forgot about him! I'll definitely check that out as I've heard he's very good.

Kathy

ktzndgs

05-19-2011, 03:07 PM

My trusted holistic vet said to see Dr. McDonnell first so that's where we're going tomorrow morning. I called my husband to see if he agrees and he's 100% on board. He does not want someone local to start doing radiation on her without Dr. McDonnell agreeing that it's the most appropriate treatment. What we both like about the idea is what my holistic vet pointed out - Dr. McDonnell will be aware of all possible treatments and will point us in the right direction rather than insisting the treatment he does is the right one. I read about the new surgery at UPenn but it's not clear if they're doing it yet. Cyberknife up in NYC would be nice but I'll bet it's horribly expensive.

Thanks again and I'll let you know how the appointment goes!

Kathy

labblab

05-19-2011, 03:14 PM

Kathy, I really do think that consulting with Dr. Donnell is an excellent idea. As soon as I looked at his website, I was hoping that he might be within driving distance for you. I'll be watching anxiously for your updates. And please give Macy a giant hug for me.

Here's some big hugs for you and your husband, too!
Marianne

ktzndgs

06-28-2011, 12:58 PM

It is with very heavy heart that I tell you Macy passed away Saturday morning, June 25. Macroadenoma surgery is not normally done in the US but we had a unique opportunity to give Macy a chance at life with surgery done at UPenn by a visiting vet experienced in macroadenoma surgery. The surgery was done on the 21st. She passed away the night I brought her home, just feet from me in our family room where she and I were sleeping. I haven't learned the cause of her death yet.

We knew there was a very real risk she would't survive the surgery but Macy really had no other options and we honestly did think we had a good shot at survival and a life after recovery. That wasn't to be but we're still at peace with our decision. We hope that this will bring diagnosis and surgery to other dogs sooner, before the tumor makes them too weak. We found that any stress at all really set Macy back and we think that might be what happened after surgery. The stress of the trip to UPenn, the surgery, time in hospital after surgery and the trip home were just all too much for her. She had a team of excellent vets and the staff at UPenn who are grieving with us.

Kathy

Squirt's Mom

06-28-2011, 01:31 PM

Dear Kathy,

I am so sorry to hear about Macy. I had so hoped the surgery would give ya'll much more time together. :(

In my mind and heart, Macy stands along side Lucy Goo to show us all what the future can mean for babies with Cushing's. They have shown that there is hope for a cure for pups with PDH, too. So along with sorrow, I feel gratitude to you and to Macy.

Macy's name has been added to our Remembering list for 2011. She will always be remembered and honored her among her Cushing's family. When you feel up to it, we would love to share in your memories and celebrate her life with you in the In Loving Memory section where you can post a tribute or memorial to your sweet girl.

I know how empty words are right now but please know we are here anytime you need to talk. We are always here for you.

Our deepest sympathies,
Leslie, Squirt, Trinket, Brick and our Angels, Ruby and Crystal

littleone1

06-28-2011, 02:50 PM

I am so sorry for your loss Kathy. You did everything you could possibly do for Macy. My thoughts and prayers are with you. Rest in Peace Macy.

BestBuddy

06-28-2011, 06:00 PM

Kathy

I am so sorry. Macy was much loved.

Godspeed Macy.

Jenny

labblab

06-28-2011, 06:13 PM

Dear Kathy,

I cannot tell you how sorry I am to hear about Macy's death. I was hoping so very much that she would benefit from one of these new treatment advances. But there is no doubt that you left no stone unturned, and that her experience will end up helping other Cushpups in the future as this treatment is developed further. So she is leaving both a legacy of love, and also a legacy of learning.

Thank you so much for returning to tell us what has happened. Macy will always be honored and remembered here, and you both will always remain members of our family.

Sending you my deepest sympathy, and also many hugs in loving memory of your dear, brave girl ~
Marianne

zoesmom

06-28-2011, 06:46 PM

Kathy - I am very saddened to hear about Macy. I have followed her journey, more than most, and I know it was frustrating, if not puzzling, much of the time. Now we learn that she was a pioneer in
k9cushings. Like Leslie said, we've only had one other dog (Lucygoo) undergo this type of surgery. I know your heart is breaking at the outcome but I suspect that what was learned from Macy's case will help other cush pups down the road. You should be proud of both her and yourself. Rest in peace, Macy. Sue

Casey's Mom

06-28-2011, 11:42 PM

Hello Kathy, I too was very sorry to hear of Macy's passing. She was so blessed to have you and your family in her life. Fly free sweet Macy.

Love and hugs,

frijole

06-29-2011, 08:12 AM

I join the others in sending my best to you and your family. Macy was a pioneer and you truly did all you could. Run free of pain dearest Macy and know you will always be remembered and honored here. RIP angel Macy RIP. Kim

bgdavis

06-29-2011, 09:28 AM

Kathy,

I'm so sorry to read that Macy has crossed over the bridge. It's so sad that she survived her surgery, but failed to recover. You and your husband certainly did everything possible for her.

My thoughts are with you. Macy was much loved.

Bonnie and Angel Criss

ktzndgs

06-29-2011, 10:28 AM

Is LucyGoo's owner still in the group? I'd love to find out how big her tumor turned out to be. Macy's surgery was done by Dr. Meij of the Netherlands. I didn't know they'd tried the other route her in the US. Has anyone had VITCOM?

Kathy

zoesmom

06-29-2011, 11:53 AM

Kathy - here is a link to Gina and Lucy's thread. I don't think she stops by the website very often anymore but she probably stated the size of Lucy's tumor somewhere in one of these threads. Sue

http://www.k9cushings.com/forum/showthread.php?t=534&highlight=lucygoo

And here is their original thread - it's in the archives section:

http://www.k9cushings.com/forum/showthread.php?t=1009&highlight=lucygoo

zoesmom

06-29-2011, 04:42 PM

Kathy -

There were times when I suspected that Zoe's pituitary tumor was a macroadenoma. We opted out of the mri; however, she had PD/PU most of her life and it was an ongoing problem, even after the cush dx and trilostane. So I also suspected diabetes insipidus. I think I read once that DI can happen when the pituitary tumor is located in a particular place on the pituitary - like at the back. Over the years, Zoe also had Horner's syndrome and towards the end, she had a severe case of canine vestibular syndrome (which is often mistaken for a stroke). Strokes aren't very common in dogs, but I suppose - post-surgery - that could have been a complication for Macy. At the very end, Zoe lost her eyesight virtually overnight. We will never know if that was a result of a pituitary macrotumor or something else like a meningioma. The vet did feel that it was probably caused by a brain tumor of some kind - pituitary or otherwise. Maybe one of the administrators will have Gina's e-mail. Otherwise, you could try sending her a private message from here and she should see it next time she logs on. Again, I am so so sorry about Macy. Sue

PS - I like your suggestions for macroadenoma owners.

Roxee's Dad

06-29-2011, 07:52 PM

Dear Kathy,

I am so sorry for your loss of Macy. She knows she is loved, Rest in Peace sweet girl. You are our newest and brightest star in the sky.

jrepac

06-30-2011, 12:59 PM

So sorry to read this; you did a very courageous thing in pursuing the surgery. Rest easy Macy.

Jeff & Angel Mandy

k9diabetes

06-30-2011, 03:07 PM

I am so very sorry to learn of Macy's passing... the experiences that go with a macroadenoma are just heartbreaking.

With deepest sympathy,

Natalie

apollo6

07-02-2011, 12:58 AM

Dear Kathy
I am so sorry to hear about the loss of your beloved Macy. At least she was home with you. You did your best for your angel and she knew it.
Hugs Sonja and Apollo

ktzndgs

10-04-2011, 11:30 PM

I'm really missing Macy these days. Just wanted to post this.

Every night is so empty without you;
I’m so lonely since you went away.
If by chance we could dance to the music
Let it play...........

Kathy

Cyn719

10-05-2011, 12:00 AM

Kathy - I am so so sorry for the loss of Macy -- you were an amazing mom to Macy and you went above and beyond for her - you loved her so much and she knew that - you will always have the special memories of her with you always and forever - Love and prayers xo

marie adams

10-05-2011, 11:42 AM

Hi Kathy,

I too still miss those special moments I had with Maddie. We got a new bundle of fur the end of May and she has taken away some of the missing, but there are those moments when the tears come; so I know just how you feel.

Please take time to take care of yourself and find the joy in you have those special moments to remember--I know it is hard, but telling the silly stories makes you feel better. :)

Nika'sMom

10-05-2011, 01:12 PM

I am sorry for the loss of your beautiful Macy....your words to her that you just posted are beautiful...I feel your pain, as I have been there too. Sending healing prayers to you, I wish there was more that I could say to help you through this. I have read your story and I know that you were an amazing Mom, and your Macy knew it too...many hugs from Lynda

ktzndgs

10-06-2011, 12:07 AM

The words I posted are from the song "Moonlight Lady" as sung by Julio Iglasias. Macy was a K9 freestyle dance Champion. The first Newf to achieve that level. She was really wonderful too. She was known as being a character. She loved the attention she got and knew how to toss in a move that would work. :)

Just as Macy was being diagnosed we brought home a new little girl who adored her aunt Macy and who is turning out to be a chip off the old block so she's keeping me busy. I love looking into those beautiful eyes and seeing that bit of Macy but knowing there's a new life for me to discover with her.

Kathy

Cyn719

10-06-2011, 12:18 AM

Macy was a amazing dog for sure!! I know how much Macy is missed and Macy could never be replaced but I am so happy to hear that you are enjoying your new little bundle:) I love to read your posts - your words are always so beautiful xo

ktzndgs

11-15-2011, 07:26 PM

This is my final post to the K9 Cushings forum. AS much as I want to support other pet owners in their struggle with macros returning to the forum is an emotional struggle for me. I need to give more to the dogs I have here and try to put my grief aside. Anyone who reads this post can find a similar post and other pet owners with macro dogs posting under "macroadenoma" in the Everything Else section.

My most important point here is that the longer you wait to diagnose a macroadenoma, the less likely you are to be to be able to treat it. My goal here is to encourage you to get a full diagnosis before you go too far. Cushing's and macro's can be managed if you treat the right problem at the right time.

When Macy was sick I tried so hard to track down information about Cushings and macroadenomas but this tumor causes so much stress to us as owners I just couldn't read through everything to find the pertinent info. I finally found there is a place on this site with some macroadenoma information . Here's the link....

http://www.k9cushings.com/forum/showthread.php?t=229

Vets will tell you that a pituitary tumor isn't a macroadenoma until it reaches 1 cm but one of the doctors I've read recently said that a dog's tumor should be considered a macroadenoma when it can be seen on ct scan or mri or when it's 8mm. That's very important because a dog's head is so much smaller than a human's head. In the past a dog's tumor wasn't considered macro until it reached the size of a human macroadenoma - 1cm. They suspect that up to 75% of dogs with a tumor that can be see on ct or mri will end up with macroadenoma's so early screening once the dog is diagnosed with Cushing's is incredibly important. Based on the size of Macy's macroadenoma it was already a macroadenoma when she was diagnosed with cushings! It sounds to me as though the reason they're not caught is that the dogs normally get this later in life and the symptoms are mistaken for dementia among other things. I was told Macy was developing dementia even though she was just 7 years old at the time. :(

Another pet owner with a dog who had Dr. Bruyette's surgery said Dr. Bruyette recommends an mri as soon as a dog is diagnosed with Cushing's in order to check the size of the tumor. Apparently early mri's are also done in some areas in Europe. Doing an early mri would have saved me a lot of money and I really wish it had been done for Macy. I can't help thinking that we would have done radiation immediately and Macy might still be with us. I also would not have spent so much money on vet visits and unnecessary tests and medication while we chased after the symptoms nobody seemed to recognize.

One of the first threads I finally found was by Gina about her dog LucyGoo. I wish I'd found them sooner as they shared some of the same weird symptoms and would have pointed me in a direction. I'm learning there are symptoms are common to macroadenomas.

Macy experienced the following......
- diagnosis with Cushing's took almost a year and symptoms included panting, extreme water consumption, inappropriate urination, hair loss, dull coat, mental dullness, increased appetite
- even before the Cushing's diagnosis she stopped eating favorite foods
- UTI's
- choleseterol went up
- white count went off

After Cushing's diagnosis but before macroadenoma diagnosis.....
- trilostane only worked *well* when the dose was kept low.
- she lost the ability to perform previously well executed tasks
- personality changed in barely perceptible ways
- developed muscle twitching
- repeated vaginitis
- lost interest in things she loved
- developed the tendency to arch her back "like a cat" as Gina described Lucy did.
- stopped lifting her head
- paced (or circled as some call it) relentlessly
- periodic foot drag
- intermittent neck involvement
- became anorexic
- trilostane/Vetoryl eventually caused vomiting
- displayed weakness in all four legs

When Macy became anorexic 9 months after being diagnosed with and treated for Cushing's I finally stopped giving it to her. That's when her general practice vet and I decided it was time to have an mri done to determine whether the stiffness we were seeing was her spine or caused by her illness. We also decided at that time to forego the full spine mri and look only at her neck and brain in order to see the tumor. I had finally reached the point where I had to see the tumor and know how big it was.

The first feedback I got about the tumor was that is was so small they could barely see it. A few weeks later my husband insisted on seeing the full report so I picked it up at the vet's office and was horrified. It clearly said Macy had a large tumor. The short story is that Macy's tumor was so large it was referred to as "giant". One option was radiation which would reduce the tumor by 30% and give us maybe another year with her. At a 30% reduction it would still have been a macroadenoma which means she would still feel sick. Eventually we stumbled on the surgical option.

At first I thought they did the same surgery on Lucygoo & Macy but Lucygoo's surgery was VITOM while Macy's surgery was done by the veterinarian from Holland who goes in through the roof of the mouth. While Lucy survived Macy only survived the surgery. She was allowed to return home too soon and the stress of that was too much for her and she died the day she came home.

Macy's surgery was Tuesday, she was released to wards on Thursday and released from the hospital Friday. Friday was the first time I'd spent any significant time with her and it was absolutely horrible. Her stress level was thru the roof. I'd never seen her walk before and as I recall she had a once sided shuffle indicating to me that she'd had a stroke but I thought I'd get time at home to see the real Macy. She didn't live long enough. We were sent home with her for a drive of several hours. She was so stressed by the time we got home she never recovered.

I've spoken to the vets about allowing owners to spend as many hours as possible with the dogs IN THE HOSPITAL to see what they're dealing with and learn how to cope after such huge surgeries. What's normal???? Also, it's very feasible to skype (or something) so that the vets can see what's going on at home at 10pm when you call them. We should have done that. Finally, Macy should not have been released to me on Friday. She just was not ready. At best I should have stayed near the hospital with her rather than bringing her home but hindsight is 20/20. I was not familiar with her new stress reaction to life. I was not able to comfort her. She barely knew I existed. I didn't realize how little she ate in the hospital. She did not have a normal appetite at all.

The surgery that was done to Macy caused a very raspy throat. I don't know if VITOM surgery does the same. I'd love to know how long most dogs who have VITOM surgery are hospitalized after surgery. I do know that in comparing notes with Gina she definitely said Lucy was in the hospital a lot longer than Macy so the price tag on the surgery had to be quite a bit higher than the $9k we were billed. Then again, with all of Lucy's hospitalization she also survived.

At one point I really wanted this surgery to work but now I know it's more important for owners to understand early diagnosis is key! I also want owners to be very aware of the symptoms of the tumor and not put off an mri. A small tumor is much easier to remove than a large one and an mri to confirm a problem is a lot less expensive than treating for a wide variety of symptoms.

My love and kind thoughts to everyone.

Kathy