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TheDude
07-20-2018, 02:42 PM
Hi. I'm new here and need some advice and thoughts from others.

My 10 yr old Dachshund Tucker was diagnosed with cushings last year.
A few years ago his blood work showed high alkp, but the vet never mentioned anything about it.
As time went on the only symptoms Tucker had was excessive hunger. I was always told its because hes a Dachshund. I was even told this by 2 vets after getting another opinion. I didn't buy it because my other Dachshund isnt the same way.
As more time went on his drinking habits increased, but he never had accidents. He was also having weird random body jolts that vets were clueless about. He had ibs issues as well off and on.
Tucker ended up getting sick with a bought of pancreatitis after eating a bunch of box elder bugs after my neighbors cut a tree down. He threw up and had a bunch in it. Test showed his CPK was high. Followup was normal. All other labs were normal except the alkp which was high at 1604 (range 5-131). His weight did drop a few lbs because of it but he went back up to 16 lbs. The followup alkp came back at 1577 (5-131) so it actually dropped.

I saw a vet that was filling in for my normal vet at the time for the followup and mentioned the excessive hunger again and the high alkp. She said I should check for cushings even though my normal vet said if he put 10 dogs next to each other and looked at symptoms he'd pick the other dogs. He was pretty convinced he didnt have cushings because he didnt have the typical symptoms.
We first had a urine cortisol test done which came back high. He came back at 16. The lab range went to 13. Then we had the ACTH stim test done. Cortisol sample 1 came back at 3.5 with the lab range of 1.0-5.0 so normal, however the cortisol sample 2 after the injection came back at 23.5 with the lab range of 8.0-17.0.
He was then diagnosed with cushings.
He was put on 30 mg of Trilostane.
The followup test 2 weeks later showed sample 1 at 2.2 (range 1.0-5.0)
and sample 2 at 4.8 (8.0-17.0)

I was told to keep him on 30 mg and retest in 6 months.

During this time he was always lethargic and just never wanted to do anything. I kept bringing it up, but was always told we wanted him more on the low end of normal. I ended up finding a new vet who charges a lot less for the tests so I took him to the new vet back in May.
She ran a test and that test came back with sample 1 being 1.2 (1.0-5.0) and sample 2 at 2.7 (8.0-17.0)
She lowered his dosage to 10 mg twice a day. The followup test showed sample 1 at 1.8 and sample 2 at 3.5.
She said if I wanted I could try to give him 10 mg once a day or do twice a day and skip every other day to see how he is as far as being more like himself. Her whole thing was peeing accidents which he never had. She said she doesn’t usually put dogs on meds unless they are having accidents.
I tried once a day on the 10 mg, but he did start to have to go outside more often and his water consumption was increasing although he always drinks a lot right before eating not so much during the day. I ended up putting him back on the 10 mg twice a day and he seemed to be doing fine on it....although his hunger issues were still there....so much he would wake me and my wife up almost every night as if he never had food, he was still more like himself and had energy. I did notice his hair was shedding a lot more, but no bald spots and its stopped almost completely. I figured it was the season change.

This past week Tucker somehow injured his left hip to the point he cant put any pressure on it and he cant walk right. I honestly have no idea how it happened. He's had hip issues for while, but one morning he woke up and was wobbling as he walked then it got worse. Thinking it was some kind of spinal issue which he has had in the past we took him to the usual vet and had x rays done. The vet said the x rays didnt show anything other then an old calcified spot on his lower back that wouldnt be causing this and no physical test he did showed any signs of an acl tear, etc.. although when he pulled back on his hip he did yipe. I mentioned if the cushings and his cortisol being to high or to low could cause it. He said no especially with just one side. He also said high cortisol can cause muscle wasting, but he isnt seeing it with him. Nothing else showed in his abdominal area other then a full bladder.
I was told give him carprofen and tramadol. So far no difference.

I had the vet run some blood work thinking he'd run a full panel, but he didnt run a cbc. Just checked his liver/kidneys because he was giving him carprofen.
I was told his labs looked good other then the alkp which he said was from the cushings, but after looking at a copy his BUN is low at 6 (range 7-27)
and his AMYL is 378 (range 500-1500). The vet mentioned nothing about this. His last labs these were both normal. What concerns me is the Trilostane is causing it, but wouldnt his levels be high not low?
He has only been going pee outside twice a day the last few days because of his hip issue. He holds onto it until he cant.
The alkp has also gone higher. I thought when treated for cushions it should come down? Right now its 1912 (23-212). This last test was in house though where as the others were done by Antech so it was sent out.

Sometimes I wonder if he really has cushings and isnt something else, but based on the labs it would say yes. I havent had any tests done as far as ultrasounds or mri's.....I cant afford it. Pretty certain its pituitary though. The ACTH tests alone are breaking me, but I'm doing my best.
I know the medication only helps with the symptoms so could this just all be his cushings is starting to catch up?

Does his acth labs look optimal or to low?
I plan on having another test run soon as soon as I have the full funds since its been 90 days.

labblab
07-20-2018, 08:03 PM
Hello and welcome to you and Tucker! I apologize that I have only a moment to reply to you today, but I want you to know that we’re very glad you’ve found us, and we appreciate all the information that you’ve given us. I’ll definitely return tomorrow when I can take the time to carefully sort through the things you’ve told us. So stay tuned, and I’ll be back...

Marianne

TheDude
07-21-2018, 01:08 PM
Thank you. I look forward to it.

I'm puzzled at the moment with his hip issue. Last night he started to put some weight on his left leg and started to somewhat walk a little more. I actually didnt give him the Trilostine last night. I wanted to see if theres some odd connection with the meds because when he wakes up he seems to move a little more, but after an hour or so of taking the meds he cant walk on the one side again until several hours later. This morning he went out, went to the bathroom and ate with a limp, but looked a little better then I gave him the 10 mg pill and an hour after he actually sneaked out into the kitchen when I was making breakfast and either re injured himself or his hip just gave out. So it really does make me wonder if the meds are doing something. I think I'm going to stop him on the meds for a few days and see what happens. The only thing I'm worried about is his cortisol going up because of the pain and causing more damage. His breathing was a little heavier then usual this morning but has been lethargic so I wonder if he's not medicated enough or its just from the pain. I cant get him to the vet to have a acth test yet because I have no money from the last vet visit a few days ago and I know I'm in store for a good 2 tests. He's not drinking crazy amounts of water and he eats what I give him. I should mention he has had a t4 test ran (was actually by mistake) and has been tested for diabetes. Both were normal/negative.

labblab
07-21-2018, 06:02 PM
Gosh, I’m sure sorry that Tucker is having these problems. I wouldn’t worry about those two low readings on the BUN and amylase — the BUN is barely out of range, and I don’t know that the low amylase would mean anything in Tucker’s case, especially if it’s only turned up once.

As far as the ACTH results, they are all in the desired therapeutic range, but you really dodged the bullet on that. Your vet should not have said it was OK to wait for six months to test after the initial ACTH at the fourteen day mark. It is documented that cortisol levels often continue to drop downward further during the first month at a given dose, even when the dose is unchanged. So Tucker could easily have gotten into trouble with low cortisol. And even though not technically too low, Tucker might not have felt so lethargic and sluggish had his cortisol been permitted to run a bit higher. Also, a higher cortisol level might lessen discomfort caused by any arthritic or inflammatory pain that he might be experiencing. So I agree with your decision to lower his trilostane dose, and even with the notion of temporarily discontinuing it altogether in order to see how that affects Tucker’s behavior. You can always start back up at any time.

Also, in terms of monitoring trilostane treatment, we’ve been very excited to learn of a new monitoring protocol that only requires testing the baseline cortisol, and not the full ACTH. This protocol is recommended by Dechra, the makers of brand name Vetoryl, and seemingly has several advantages. Take a look at this post for more information:

http://www.k9cushings.com/forum/showthread.php?185-Trilostane-Vetoryl-Information-and-Resources&p=1252#post1252

In the meantime, please let us know whether Tucker shows any improvement while off the medication.
Marianne

TheDude
07-21-2018, 06:45 PM
Thank you for the reply!

I agree after some reading, that the vet should never have said go 6 months. Its pretty clear he has 0 clue with cushings. Of course the new vet I went to for the tests doesnt seem to have a clue either as she was getting feedback from the lab itself, but even she said she would have started him at 10 mg once a day, not such a high dose and worked up.
Its hard finding good Drs for humans where I am and I guess its no different for pets. My dogs even prior to cushings have been to 2 other vet offices and not one caught the cushings early. I figure he's already had it for a good 4-5 years. I'm crossing my fingers my other one doesnt have or get it. So far no signs, but she is only 8. Tucker has cloudy eyes, but isnt blind....so I know the cushings has taken a tole on him. Hopefully he doesnt get sars. The poor guys been through so much.

Tucker did actually manage to get up himself and walk out without much issues awhile ago after I let my other dog out. I didnt think he was going to budge, but he did and he was almost walking normal. He's back resting. Been sleeping a lot and I know part of it are because of the pain meds especially the tramadol. I'm ok with it for now though so he can heal up hopefully. I know the carprofen can be risky with cushings, but he's been on and off of it for years and does ok with it. I make sure to give it with food and am keeping an eye on his stools. Its does seem to help.

I plan to talk to the vet about running his cbc and testing his potassium which hasnt been done since the diagnosis. I'll see if they can check his BP as well.

I will check out that link and even print it out for my vet to see.

I will post updates soon.

TheDude
07-22-2018, 07:34 PM
Well going on day 2 of no Trilostane. Tucker is still lethargic, but has moments where he snaps out of it. He isn't begging for food or drinking large amounts of water. He does pant very easily outside. It is super hot, but he usually doesn't do that. His ears are a bit warm and he has clear nasal discharge at times. I'm still puzzled with his hip because one minute he's somewhat walking ok then the next cant at all or one wrong move and he hurts himself and just picks his leg up. It's disgusting that I can get an mri for $400 without insurance, but a small dog is crazy high. The Tramadol seems to help to a point. No idea about the carprofen. I'm guessing his issue is with a tendon. I bought Andrew Jones' Ultimate Formula as it has a lot of good stuff in it. I'm hoping it helps even a little. I'm calling the vet tomorrow about the cbc, etc.

TheDude
07-24-2018, 04:29 PM
Took Tucker to the vet today to get some lab results in since I had them run a super chem and talk about his hip issue more.
Didnt get much with the hip. Was told could see an orthopedic Dr.. I know they will want an MRI so thats not going to happen. He said it could take time to heal.

Now as far as the blood work goes he told me its all unremarkable, but if he didnt know he had cushings he'd be wanting to test him for it.

He has several that are elevated (some slightly)

Total Protein 7.6 (5.0-7.4)
Globulin 3.7 (1.6-4.4) He said this ones usually high with dental disease which I know my dog has.
Alk Phos 2131 (5-131)
Triglycerides 347 (29-291)
Platlet Count 479 (170-400)

Everything else was normal including the potassium levels, wbc, rbc, etc... The only ones I'm really concerned with are the Platlets and the Triglycerides even though they arent crazy high. After seeing the results though its no wonder he just wants to sleep all day.

I told the vet I'm going to pretty much start over with the cushions. He prefers Lysodren over Trilostine and prefers a low dose dex test. He charges and arm and a leg though.

I am going to go to the other vet tomorrow that I have been having the tests done and run an ACTH test and go from there. Its pretty clear from the results the cushings isnt under control. I'm really hoping he isnt one of the cases that the meds are making the tumor grow faster. His labs have never looked like this.
Back in November everything looked good when he was on 30 mg.

Squirt's Mom
07-24-2018, 04:59 PM
I prefer Lysodren to Vetoryl (Trilostane), too.

TheDude
07-24-2018, 05:21 PM
Why do you prefer Lysodren over the Trilostane?

Squirt's Mom
07-24-2018, 05:46 PM
It is an older drug and we know more about how it works.

It works ONLY on the adrenal glands while Vetoryl works on a pathway or loop between the hypothalamus, pituitary, and adrenal glands (the HPA axis). LOTS of things happen along that pathway that have nothing to do with cortisol regulation.

It is typically less expensive to use after the induction or loading phase because the dog does not take Lysodren daily and because fewer ACTH monitoring tests are required.

It typically requires fewer ACTH monitoring tests because the dose usually does not need to be changed very often if at all.

Monitoring test schedules do not matter. The ACTH monitoring tests can be given at any time because the drug has a long life in the body helping it to maintain a more uniform level of cortisol over time.

Dosing options are more easily obtained without resorting to compounding. Lyso comes only in tablets which are easy to break while capsules should never be opened and divided.

Vetoryl has been proven to cause elevations in the intermediate or sex hormones while lowering the cortisol.

If the dog has been misdiagnosed with Cushing's the odds of permanent damage from Lysodren are much lower than with Vetoryl.

I personally do not like nor trust anything that is "new and improved". Put those words on my laundry detergent that I have been using for decades and I will switch to a new one tomorrow. ;)

Squirt's Mom
07-24-2018, 05:47 PM
And, yes, I'm an oddball. :D

Harley PoMMom
07-24-2018, 10:10 PM
One very important caution note when switching from Vetoryl/Trilostane to Lysodren/Mitotane (or vise versa) there needs to be a wash-out period of 30 days, meaning that no medication for Cushing's can be given.

labblab
07-25-2018, 08:17 AM
Those of us on the forum know that Leslie has always been, and remains, a strong advocate for Lysodren. Overall, I am grateful that both treatment options — trilostane (Vetoryl) and Lysodren — are available since one medication may end up being a better fit for a specific dog than is the other. This may indeed turn out to be the case for Tucker. I hope Leslie won’t mind, though, if I offer some “counter” thoughts to her broad endorsement of Lysodren. Trilostane is no longer all that new a medication. It has been actively used worldwide to treat dogs with Cushing’s for over fifteen years now, so there is quite a large body of clinical experience upon which to rely. I do think it’s fair to say that there remain aspects of trilostane’s effects on adrenal function that remain poorly understood, but in terms of clinical use for treatment of Cushing’s, there are now multiple years of experience to draw upon.

One of the biggest question marks has been the best way to regulate and monitor trilostane dosing. Just as has been the case for Lysodren, ACTH testing has always been the default. However, per that link I gave you earlier, it appears as though simple testing of resting cortisol offers a more accurate and much less expensive method for monitoring trilostane treatment. Therefore, routine ACTH tests for trilostane dogs may become a thing of the past with an associated decrease in testing cost. I do believe that ACTH testing will remain necessary for dogs taking Lysodren due to the manner in which the adrenal glands are affected by the medication.

One statement of Leslie’s that I do take issue with is this: “If the dog has been misdiagnosed with Cushing's the odds of permanent damage from Lysodren are much lower than with Vetoryl.” Vetoryl (trilostane) has been safely prescribed to treat certain disorders of hair loss in dogs who do not suffer from Cushing’s at all. I am unaware of research that suggests that trilostane is more dangerous in terms of permanent damage than is Lysodren. I have seen statements that the adrenal glands of “normal” dogs are more resistant to the cortisol-lowering effects of Lysodren than are those of dogs suffering from Cushing’s. But I’ve not seen any research indicating that misdiagnosed dogs taking Vetoryl are more likely to suffer permanent damage. For Cushing’s dogs in treatment, the risk of permanent oversuppression can occur with either medication. But I do believe this actually occurs more often in dogs treated with Lysodren, and this is one reason why the worldwide clinical trend has shifted to favoring the use of trilostane during the past decade.

Once again, though, we have certainly seen cases here where a dog responds more favorably to one medication over the other. At this point with Tucker, though, I’m not sure we’re certain as to whether or not trilostane is presenting a problem for him or not — whether instead there’s something else going on in addition that is complicating things. So if it was me, I think there remain some question marks to be answered before I’d make a switch. And as Lori has pointed out, you’d need to wait a period of time before doing so, anyway. Please do let us know what you find out when you return from the vet.

Marianne

TheDude
07-25-2018, 05:14 PM
Thank for all the awesome replies and the thoughts!

Tucker was weak and sleeping like a log this morning, but as I was getting ready to leave to the vets office he perked up and actually looked more like himself. Even during the car ride he was alert 98% of the time. I dont know if he was just feeling better or it was because I didnt give him a tramadol today.
I was going to have his ACTH done, however a new vet that works at the office that I haven't seen before was there and came out wondering why I wanted to run his ACTH because he's only been off of the meds for a few days. He said I could run it, but I'd be wasting money in his eyes as the results would be inconclusive. He saw the super chem labs and agreed that it doesn't point to Addison, but rather are high due to the cushions. He said I should put him back on the Trilostane and re test in 2 weeks as well as possibly retest his labs. He said he's not worried about the lab results and that nothing was really high and they should go back to normal with the cushions controlled. I did mention how Tuckers never had bad labs, was concerned with his platlets and he said if they continue high then they can look further into it. He said I could consider an abdominal ultrasound (I forgot to ask the price on the way out). What's a fair price for them?

Tucker was painting the second he went outside this morning so I know his cortisol is going back up. He has never painted like this. Its just weird because he usually begs for food and that stopped, but I guess being high on pain meds sleeping all day isnt going to let that happen. He is eating perfectly fine though. My container of Dr. Jones' Ultimate Canine Formula came so I plan to start him on that today.

He seemed to do just fine on the Trilostane......just a matter of finding the optimal dose. He might have been on it for all I know before the hip issue. I did ask about this vets thoughts on Lysodren vs Trilostane and he doesn't like Lysodren because as Marianne you mentioned addisons occurs more often in dogs treated with Lysodren then Trilostane from his opinion and history......and its more likely to not be reversed. Both my original vet and this vet brought good points up on both. Either way they are both dangerous, but what choice do we have besides no treatment at all?
I'm going to stick with Trilostane for now and if it doesn't work out I'll consider switching after I get an ultrasound.

As far as his hip issue goes this vet did more physical testing and said this has to be disc/back related. I mentioned the x rays the other vet took and how it didn't show anything. He said if the x ray wont show certain things. An MRI would.
He figures there's an issue with a disc and its messing with the nerves that go down his leg or something like ivdd. He still has feelings and is highly sensitive on one of his toes, but his leg tends to just hang. I figure the reason why my dog was in pain and yipped the other day when the vet pulled back on his hip was because he compressed the nerve. It could of course always still be tendon/ligament related, but the fact that Tucker can walk almost normal one minute then not the next points to spine. I only wish I had the money for an MRI.
I'm sure his hip/back issue is whats driving up the cortisol which is probably why he went from normal to not the next. I at least played it safe and stopped the meds as I wasnt certain they were causing any issues.
I just hope by putting him back on the Trilostane and lowering his cortisol he doesn't end up with worse pain or more hip/leg issues. I know some people see their dogs arthritis come out because of the lowered natural anti inflammatory cortisol response.

This vet actually told me to keep him on the carprofen, but instead of tramadol give him gapapentin. Having done a little research on it its not fda approved......which imo means crap (a whole other story with my thoughts on that and the fda) and it seems to have less side effects. I guess the 2 work together really well. The only thing I'm worried about is Tucker already sleeps a lot, the medication will totally keep him out. The vet said the gapapentin would help better with the nerve issues and the pain. I just dont know if I want to try it or not because you have to taper off of it even more than the tramadol and the gapapentin is excreted through the kidneys. I'm always worried about causing more issues because the trilostane is already enough, but the carprofen on top is just more. Now gapapentin? I guess I have to think if risking possible damage or keeping him out of pain is a better route.
I mentioned a wheel chair for Tucker, but he doesn't think he needs it yet and says he usually doesn't recommend them unless both back legs don't work because dogs can tip themselves, it can wear out the front paws, etc.. I was given an orthopedic website that sells all kinds of braces and what not I never even knew they made for dogs. I was told to keep him on the pain meds, keep his walking to a bare minimum and in most cases dogs get better within 2-3 weeks. He said considering Tuckers age and cushings he may not get better and walk right again. I hope he does because seeing a dog not being able to move and just be a dog just breaks my heart. Watching him outside trying so hard to get to a spot he wants to get to just to poop isnt pleasant.

So in 2 weeks I will return to the vet. I plan to restart him on the Trilostane tomorrow morning.

Eve
08-02-2018, 08:05 PM
FYI, my dog had a ACL tear right when he was undergoing the tests leading up to a Cushing's diagnosis. His surgeon said that weakness from Cushing's likely made him more vulnerable to the injury.

Eve

TheDude
08-02-2018, 08:45 PM
Yea I've been told and have read acl tears are common with cushings. Both the vets I saw said my dogs is fine. They did the physical test part of it. I bought up a Lil Back Bracer and got it today. He's already walking better with it on, but clearly the main issue is something with his hip. The straps on it seem to be helping allow him to put pressure on his left paw.

TheDude
08-10-2018, 02:43 PM
Thought I'd give an update since Tucker had his followup acth test yesterday.
He was on 10 mg twice a day and his first sample was at a low 0.6 (1.0-5.0) and the 2nd was 1.4 (8.0-17.0)

Here's the kicker. I also brought him in because a lump appeared out of nowhere on his knee under the skin......on the side that he's been having issues walking with. Vet took a sample from it and it shows either sarcoma or mast cell. Sent it out to a lab.
So now I question if he's even had cushings at all and if this hasnt all been related to inflammation to cancer or something else. How can he go off of meds for 5 days then back on for 2 weeks and be even lower then he was before?
The vet wants to drop his meds to once a day, but do I trust that answer? At 0.6 he's pretty much addisons now. I dont feel like any of these vets I've seen have a clue as to what to do.
He put him on Zyrtec yet has him on gabapentin which I read can interact and carprofen as well. Maybe the inflammation thats being kept down from the meds its whats driving down the acth?

Squirt's Mom
08-10-2018, 03:07 PM
STOP THE VETORYL!!! At 1.6ug/dl that is much too low. I would not give another dose especially in light of the newest diagnosis. Mast cell cancer could easily cause false positives so I would not trust the cush testing in the face of this diagnosis myself. Regardless, the Vetoryl needs to be stopped now because the cortisol is toooooo low! ;)

TheDude
08-10-2018, 03:29 PM
I agree with stopping. Luckily he's still full of energy with the occasional lethargy (probably the cancer), eating (still acts like he's never had food, (probably the cancer too, etc) and didn't go into a crisis.

Harley PoMMom
08-10-2018, 08:09 PM
Gosh I am so sorry to hear about the cancer diagnosis, the same thing happened to my Bear. Bear's lump appeared suddenly on the right elbow of his front leg, it was diagnosed as a malignant peripheral nerve sheath tumor.

As Leslie stated, the Trilostane needs to be stopped and not restarted until Cushing's symptoms rebound and an ACTH stimulation test shows that the adrenal glands are producing an adequate supply of cortisol. I'm relieved to hear that his appetite is still good and he's not showing symptoms of too low cortisol. Did they check his electrolytes?

TheDude
08-10-2018, 08:30 PM
They checked them a few weeks ago but not this time.
I'm going to call the vet Monday and let him know that I don't agree with him and why.

TheDude
08-15-2018, 04:00 PM
I received Tuckers pathology on his lump on his leg. This is what it says,

"The specimen is highly cellular, with many small to intermediate lympocytes, fewer large reactive lymphocytes, moderate neutrophils, occasional macrophages and and individualized to aggregated spindloid to wispy mesenchymal cells, admixed with blood on a proteinaceous background with basophillic cytoplasmic fragments. There are aggregates of crushed chromatin debris whose origin cannot be distinguished, as well as some ruptured cells and bare nuciei.

Findings:
Mixed inflammation with lymphoid predominance

Comment:
The underlying cause of the inflammation is not cytologically apparent, and no infectious agents are identified. Spindle cells are well-differentiated and presumed to be reactive fibroblasts based on the concurrent inflammation. Differentials include injection-site reaction, vasculitis, tissue trauma, idiopathic/immune-mediated, bacterial or other infection, arthropod envenomation or attachment, or foreign body reaction (including to keratin from ruptured cysts). There is no overt cytologic evidence of malignant neoplasia in the examined specimen. Very rarely inflammation of this type is a secondary or cocurrent pathology to e.g. cutaneneous lymphoma or sarcoma. Tissue biopsy may be considered if mass persists or progresses with no known cause."


The vet said he sent it to another place, but came back inconclusive. He wants to put him on antibiotics which I'm always very hesitant to do because I know it destroys gut flora and can actually make things worse.

Having gone through thyroid cancer myself which my fna came back inconclusive, yet I opted for surgery then found out I had cancer worries me that this is the case with Tucker. He wants to put him on the antibiotics and see if the swelling goes down. He think he might have been bitten by a bug or something. If that were the case wouldnt the swelling go down even a bit by now? I dont see Tucker barely able to walk to getting a lump on his knee area out of know where as a bug bite. He wasnt even outside much and I was always there.
If the antibiotics dont work then he is going to recommend having it out considering his age.

I know the above isnt cushings related, but thought I'd share.
Now as far as the cushings part goes he's had insomnia the last 2 nights, his hunger is crazy yet during the day he's very lethargic. Thats about it. Vet still thinks I should have him on 10 mg a day even though the last tests came back low. He said the post test number is more important. Yea...ok.
I am concerned that besides the cushings he has something else going on that these vets are missing.

Harley PoMMom
08-16-2018, 10:38 AM
With the full ACTH stimulation test the post number is the one that holds more weight than the pre when montoring, however, Tucker's post value was too low at 1.4 ug/dl. According to a renown Cushing's expert, Dr. Mark Peterson, a dog being treated with Trilostane should not have a post value below 2 μg/dl. Here's his excerpt:
When using trilostane, it has become increasing clear that we do not want the cortisol values to drop too low, because that may indicate early or mild adrenal necrosis (1,11,12). In contrast to the protocol used in this reported study, I recommend stopping the drug in all dogs that develop a ACTH-stimulated cortisol values less than 2.0 μg/dl, and repeating the ACTH stimulation test in 1- to 2-weeks in those dogs. Some of these dogs will require that the drug be restarted at a lower dosage, but others will maintain low to normal serum cortisol concentrations for prolonged periods of time. And a subset of these dogs, presumably because of mild adrenal necrosis, will never need any further trilostane treatment to control the signs of Cushing's syndrome. https://endocrinevet.blogspot.com/2012/12/low-dose-twice-daily-trilostane.html

Thanks so much for sharing the pathology report on Tucker's lump, we always want to know anything regarding Tucker whether it be about Cushing's or not, so please do keep us updated!

Lori

TheDude
08-16-2018, 11:14 AM
Thanks for the reply.
Tucker seemed to do pretty good after the last acth test for a couple days. Yesterday he seemed very fatigued. Today even more. He's been pooping 3 to 4 times a day. 99% of the time they are normal. He will occasionally have mucus and what looks like fat in it. Vet doesn't seemed concerned because its not happening a lot. Early this morning that was the case with the mucus, but he went again just after 10 am and it was normal. He seems extremely weak though. He'll walk do his thing, come inside and lay down. His stomach rumbles a lot. Its so frustrating not being able to figure out if it's cushings related (cortisol going to high or going lower), pain related or something more serious like cancer.
I honestly thought he was starting to get better but now he's back to where he was with the exception of a crazy appetite which has never stopped.
When I took him off of the Trilostane this last time his protein levels were slightly elevated but went back down after I put him back on it..... then I find out the 10mg twice a day was to much. I asked how much an ultrasound is and the office said $425. With all of the blood work that's out of my budget. Its sad things cost so much. I'm trying so hard to help him, but I feel like I'm failing and I feel like the vets I've seen aren't really helping much.

Joan2517
08-16-2018, 11:23 AM
It's so hard when money and vet indifference become issues. We try so hard, but there's only so much we can do. If he was my dog, I think I would stop the Trilostane and see if he improves.

TheDude
08-16-2018, 11:56 AM
That's the hardest part for me. To not give him meds or trust the vet and do the 10 mg a day. I'm worried that taking him off, his protein levels and other labs that were out of range will return and he'll have more problems. He was only off for 5 days total last time before his labs were abnormal and his back legs got weaker. The vet was pretty confident after talking to him on the phone for a good time that 10 mg once a day would be the right dosage. I did take him off for 2 days then started him on the once a day which he's been on for 3 days. I do notice that after 1 to 2 hrs on the pill he does perk up a little more, but by night he's weak yet begging for food. I honestly feel he was better on the twice a day dosage even as low as he was. His water consumption isn't real bad, but before and after eating he drinks a lot more then he should. I am going to my original vet tomorrow to discuss the lump pathology and get his thoughts on it, but I'll discuss the cushings again. He's not to knowledgeable in it though. He's still stuck on low dose dex testing then using lysodren. The problem with his tests after they cost twice as much which is why I went elsewhere and they won't price match even though they use the same lab.

TheDude
08-16-2018, 12:03 PM
One more thing I forgot to add. He's on gabapentin and carprofen and every time he has to take it I say, "want your pain pills?" He perks up instantly. I guess he's an addict lol but seriously I know he deals with pain so I wonder how much of his fatigue is related.

Harley PoMMom
08-16-2018, 02:37 PM
Mucus in stool generally means a gut issue, could even be pancreatitis. Is there any color to the stool?

Since his cortisol was too low an ATCH stimulation test should of have been done before the Trilostane was restarted, and abnormal stools are a sign of cortisol too low.

TheDude
08-16-2018, 02:57 PM
No abnormal color. He'll have normal stools for days then one with mucus then back to normal. He does go quite a bit, but they arent small amounts. I do give him a supplement with probiotics.

He did have pancreatitis prior to his cushings diagnosis, but he was vomiting and had diarrhea. The last blood profile he had a few weeks back didn't show any issues with his pancreas. He used to always have ibs issues but that was when he had high cortisol.

Harley PoMMom
08-17-2018, 12:54 PM
My Harley had chronic pancreatitis and didn't show symptoms and his PLI concentration levels were never in the normal reference ranges using the Spec cPL tests but his blood chemistry values were.

TheDude
08-17-2018, 04:46 PM
Well went to the vets office today. He said the lump on his leg is 50/50, could be a cyst, could be a tumor and the pathology report means what it says....inconclusive. He said I could wait a couple weeks to see if it gets bigger or smaller first. The main issue is the location. Its attached to skin so there will be an open wound and they'd have to wrap it with a bandage. Theres no extra skin to use. He said if it was his dog he would have it removed. He actually removed lumps from his dog all of the time, but doesnt recommend every lump be removed for clients, but in my case he does.

As far as the cushings test I had done at the other office, its no different then what I said. He doesnt know how to treat cushings. He said based on the results he would leave him low as you want them more addisons and he'd retest in 6 months not 2 weeks. Yea no, no no.

He does figure his occasional stool mucus is IBS related since he's always had issues in that area. Could possibly be from the pain meds. Lowered his dosage. The last blood test had the spec cpl on it and he felt his abdominal area with no concerns.

Joan2517
08-17-2018, 04:54 PM
I would not be comfortable with more Addison's at all. I would rather the cortisol ran higher than lower.

Harley PoMMom
08-18-2018, 11:05 AM
I agree with Joan, cortisol that is too low is much more harmful than elevated cortisol.

FoxFire
08-20-2018, 01:28 AM
Poor Tucker. It sounds like he's been through a lot.

I hope you are able to get all the proper diagnosis's and treatments/medication doses so he can get back to his ole self.

Reading about your Tucker's ordeal puts my boy's current situation into some more perspective. He's currently exhibiting the standard symptoms of Cushing's and has elevated ACTP. Having his Cushing's test later this month, after he's staved off some infections.

What we won't do for our fur babies. I agree, the costs of these things seem higher than they should be, or could be. $425 seems a bit too high for an ultrasound. My Kobe hasn't needed one, yet so I'm not sure if that's a typical price.

TheDude
08-20-2018, 10:21 AM
Thanks. The surgery for his lump isn't going to be cheap. I'm trying hard to get the funds for it. The one thing I'm worried about is it will put his body under major stress. I don't want to create more problems. I want it out though because I'm pretty certain it's cancer and I'm hoping it hasn't already spread. I'm trying to get the ultrasound first because if he has nodules on organs that don't look right then surgery wouldn't help any. I only wish I bought insurance years ago.

Typical prices for an ultrasound is $300 to $500 do I wasn't surprised by the $425 quote.

Harley PoMMom
08-21-2018, 04:27 PM
I have Carecredit and I have relied on it many times, I even requested an increase in my credit limit when Bear needed major surgery, they were very understanding and approved it right away.

I'm including a link from our Resource Forum where you'll find a list of financial resources that may help with vet bills: http://www.k9cushings.com/forum/showthread.php?212-Financial-Resources-to-help-with-Vet-bills

TheDude
08-21-2018, 05:11 PM
Thanks for the information. I have care credit but they wont increase my limit unfortunately. I've called a few organizations and most I have called so far either don't help in the area I need it or I'm over the household income requirements. I'll keep looking.
I started a go fund me page but so far only 1 $40 donation.

What's the story with surgery and cushings anyways? Is there risk to having serious cortisol increase after due to the anastasia and overall stress of the surgery and recovery?

TheDude
09-01-2018, 11:33 AM
Here's the latest update. Tucker had an acth test 3 days ago. He was reduced to 10 mg once a day from the twice a day dose. Results showed 0 change in levels and still low so he was taken off the meds.
So far I'm seeing very little energy, he's starting to pant outside easily and his muscles are starting to get weak again. His neurological symptoms of having these weird random twitches are coming back as well. Even as low as the results were he had energy on the medication. He's eating and drinking fine. Still has a big appetite.

FoxFire
09-01-2018, 11:59 AM
Tucker's case sounds rather complex. I'm wondering if, since 10mg is the lowest dose available (although I read that 5mg is available in the U.S.) , if Tucker couldn't try 10mg every other day, if it can be done that way.

Hopefully the doctor and you can figure out the right treatment for little Tucker.

Kobe was finally diagnosed affirmatively with Cushing's (assuming his test isn't one of those false positives I've heard can happen), and the vet wants to put him on 60mg Vetoryl to start (he's 94 lbs, but overweight).

He still needs to get his ultra-sound, which by-the-way I found out is $350 in my area (western NY), so on the lower end of the range you indicated.

TheDude
09-01-2018, 12:14 PM
The vet mentioned putting him on 5 mg which we can get, but because his levels hadn't come up at all even with a dosage drop felt taking him off made more sense. I'll probably retest in 2 weeks and see where he is at.
Skipping days and doing every other day dosing is a no no according to the manufacturer. It can cause to many ups and downs because of the short life of the medication I guess.
The interesting thing is the night after the acth shot/test and the morning after he was acting very normal.

Harley PoMMom
09-02-2018, 06:43 AM
Could you post his recent ACTH stimulation test results for us? Some dogs do have a reaction to the stimulating agent, members have reported that their dog became restless and/or hyperactive. Since the stimulating agent has had a positive effect on Tucker I'm wondering if he needs a daily dose of a supplemental steroid such as prednisone.

TheDude
09-02-2018, 10:08 AM
Last night he turned around and was a lot better. He actually slept good through out the night too. This morning he has more energy and more like himself. Actually seems a little restless, but he's definitely happy today.
The last results were 0.7 and 1.4 (unchanged).
Maybe his numbers are finally coming up or he has big variations through out the day. With all of the neurological symptoms he has he has to have a decent size tumor on his brain.

Harley PoMMom
09-03-2018, 12:13 PM
I do recommend starting him on a daily dose of prednisone especially since his numbers are still too low, and the added benefit is that if pituitary tumor has gotten larger than the prednsione could reduce the inflammation caused by the tumor.

Budsters Mom
09-04-2018, 03:44 AM
I am with Lori on this one. Tucker's numbers remain dangerously low. Prednisone helped his neurological symptoms tremendously when my little Buddy has a probable pituitary macro tumor. It helps to reduce swelling around the tumor. Talk with your vet about a daily dose for Tucker, at least for now. The dosage will most likely need to be adjusted as time goes by and the tumor grows. I realize that money is an issue. It is for many of us. Thankfully prednisone is pretty cheap as far as meds go.

I would not restart Vetroyl in any dosage while Tucker's numbers remain so low.

TheDude
09-04-2018, 09:34 AM
Isn't it dangerous to start steroids without seeing if his numbers come up on their own? Last night he had to go out to pee now than usual and his water consumption is up already. He's also begging even more for food. Other then fatigue at times he's not showing signs of addisons.
Even vetoryl says post 1.5 is ok. Yes I agree its to low, but they also say to stop meds and retest after 7 days. I think I'd rather test then see if he needs the steroids then risk driving him up if his numbers are already starting to go back up.

Harley PoMMom
09-04-2018, 12:47 PM
Increased drinking and urinating are signs of Addison's too. Dr. Mark Peterson, who is a renown Cushing's expert, states that when treating Cushing's with Trilostane a post of less than 2.0 ug/dl is too low:
When using trilostane, it has become increasing clear that we do not want the cortisol values to drop too low, because that may indicate early or mild adrenal necrosis (1,11,12). In contrast to the protocol used in this reported study, I recommend stopping the drug in all dogs that develop a ACTH-stimulated cortisol values less than 2.0 μg/dl, and repeating the ACTH stimulation test in 1- to 2-weeks in those dogs. Some of these dogs will require that the drug be restarted at a lower dosage, but others will maintain low to normal serum cortisol concentrations for prolonged periods of time. And a subset of these dogs, presumably because of mild adrenal necrosis, will never need any further trilostane treatment to control the signs of Cushing's syndrome. https://endocrinevet.blogspot.com/2012/12/low-dose-twice-daily-trilostane.html

labblab
09-04-2018, 01:08 PM
Last night he turned around and was a lot better. He actually slept good through out the night too. This morning he has more energy and more like himself. Actually seems a little restless, but he's definitely happy today.
The last results were 0.7 and 1.4 (unchanged).
Maybe his numbers are finally coming up or he has big variations through out the day. With all of the neurological symptoms he has he has to have a decent size tumor on his brain.
I definitely understand Lori’s and Kathy’s concerns, and the decision as to what to do is perplexing. But if Tucker continues to show improvement as far as energy level and overall demeanor, I think I’d be reluctant to start the steroid now, too. If he’s just now showing the excessive thirst/urination, I’d be guessing it’s due to a rising cortisol level rather than a lowering one. If it was low cortisol that was the culprit, I’d have expected to see those issues back when he was tested at the end of August and his cortisol was known to be low. So if he remains perky and energetic, I’d probably continue to track him for another week or so and then retest again, too. Of course, all bets are off if he backslides and becomes lethargic or visibly ill. If that happens, steroid supplementation may indeed be warranted and genuinely needed.

Marianne

TheDude
09-04-2018, 01:48 PM
You're not kidding with what to do is perplexing. He seems to have a very stubborn case of cushings. One day he seems fine then the next he's lethargic. I dont know whats related to cortisol levels, his brain/tumor and whats related to a possible other underlying issues. He does have the lump on his leg that could be cancer and he does have back issues/pain so its hard to tell whats what. The interesting thing is even on the meds and as low as he was he never lost his appetite. His poop is normal, hes not vomiting, etc..
He drinks normal water during the day. Night time seems to be when its more increased. I dont know if his cortisol is bouncing around a lot or what.
He actually snuck on the sofa earlier. Jumped up himself. I dont allow it, but he sneaks it. He just hasnt been able to do it for quite sometime because of the hip issues he had.
This morning he climbed on me in bed like he always does and was wagging his tail then after awhile he's weak again. I am going to have him retested before anything else is done. If his levels are still as low then I'll have the vet give me steroids. I wonder if I'm one of the cases where the meds caused necrosis that he wont have to be put on the meds again. That or he now has atypical.
The last 5 days I took him off of the meds he starting panting easily outside and was weak. This time he painted the 3rd day, but that was it.
I am hopefully going to be able to get an ultrasound done soon. I set up donations. Not many are coming in, but I'll at least have some towards it. Vet doesnt see a need for it, but I want to see his adrenals size and if theres any kind of mass on his liver and what not especially since he does have the lump on his leg.


My other dog heard something outside in the back yard, barked and Tucker perked up and ran out. He's walking around sniffing as usual at the moment.

TheDude
09-07-2018, 12:26 PM
Ok so after 7 days I had his resting cortisol ran to see if his levels were still way too low. It came back normal at 2.5. So no steroids. He was also acting very normal yesterday. Lots of energy, happy, etc. Today back to lethargic. His cortisol levels must be bouncing like crazy. Now I'm wondering if he's one where the trilostane isn't going to help him.
I am keeping him off of the meds for the moment until more symptoms appear. I am also calling around getting prices on ultrasounds. So far $425 without a specialist visit is the cheapest in the area.
Vet also ran a basic blood panel that didn't show anything different. Still has low bun, low amy, high alp and elevated triglycerides.

He also has a new lump on the back of his right leg.