Goodbye sweet Cocoa

[Cocoa's Mom]

Hello, all!

First of all - this is an awesome forum! I have learned so much over the last month reading everyone's postings. Thank you for your breadth and depth of knowledge on this topic.

We have an 8-year-old mixed breed dog named Cocoa whom we love dearly who *might* have Cushing's. I am really confused, though, because her lab work and such is not as clear cut as I'd like it to be. Don't these dogs read the textbooks? :D

We started noticing about 6 months ago that she was drinking a lot more than usual. She's always been a very light drinker with very concentrated urine, but no longer! She drinks and pees like a race horse (a little over a gallon per day for a 60 pound dog), and started peeing in the house at night about a month and a half ago - which is very unlike her. She has a bit of what we refer to as 'butt dandruff' - a scaly rash on her hind quarters. Her fur is a bit thinner than it was when she was younger.

As for other symptoms;
- Appetite seems normal, I think. We have had some trouble with her getting into the trash can over the last 6 mos or so, but she does so when there's still food in her bowl, so I don't know that it's out of hunger.
- Her belly is a bit bigger than it's been in the past.
- She pants all the time, and her favorite place is on the ground level on the cool tile.

The peeing at night is what finally made me take her to the vet.

Here's what we've found out so far:
- Her glucose is normal. She is not diabetic.
- Her cholesterol is high (347)
- Her liver enzymes are normal.
- Her eosinophils are very low (0%, 2-10% is normal)
- Her neutrophils are high (80%, 60-77% is normal)
- Her urine is very dilute.
- Her abdominal ultrasound showed no adrenal tumors, but did show an enlarged liver.
- Her urine culture was negative (and a round of antibiotics hasn't changed anything, either)
- Her bile acids are high (27 or so, normal is up to 14.9)

After having all these tests done, everyone was thinking it was pituitary Cushing's.

BUT...her low dose dex suppression test came back NEGATIVE for Cushings.

Now I'm at a loss as to what to do next. Can you still have Cushing's with a negative low dose dex test? Have any of you ever experienced this? Maybe the test should be repeated?

I should also mention - she has hip dysplasia and has been on novox for her hips since she was 1. That could potentially explain the liver enlargement. And if she has Cushing's, I'm very afraid she'll be in a lot of pain after it's treated because she can no longer take her NSAIDS due to her liver. Arrgh!

Any advice you could give me would be greatly appreciated. She is like one of our kids, and we want to do everything we can for her.

[frijole]

Welcome!

Interesting and thanks for all the info.. While Cocoa certainly has some symptoms of cushings - two things stood out to me. First off, cush dogs are ravenous and would never think to leave a kibble in a bowl. :D Second the normal liver enzymes. That coupled with the ldds test coming normal makes me think it must be something else... but that said.. nope - they don't read the dang book!

It would help if you could post test results for all tests done. Also if you have the comments/write up from the ultrasound that could provide some insight.

If diabetes is ruled out then I'd look into doing thorough testing of the thyroid as hypothyroidism mimics cushings also.

Hopefully others will chime in with their thoughts. Glad you found us - don't be shy. Kim

[Squirt's Mom]

Hi and welcome to you and Cocoa! :)

I'm with Kim - Cushing's is not at the top of my list of possibilities with the normal liver values and relatively normal appetite (cush pups will get into the trash but I can't imagine one leaving anything to eat that was immediately accessible to them. ;) ) The negative LDDS isn't a big deal as they can and do give false positives/negatives AND Cocoa is displaying some classic cush signs - skin/coat, belly, panting, drinking, peeing, seeking cool spots to lay. So even tho that test result (LDDS) isn't typical of a cush pup, Cushing's is still a possibility...just not at the top of the list yet.

Since diabetes mellitus has been ruled out, based on the labs given so far anyway, I would ask that diabetes insipidus be looked into. DM is diabetes that results from sugar imbalance; DI is diabetes that is not related to blood sugars, but rather to how the body processes water. The big signs of DI are the drinking and peeing, and it does present with Cushing's signs (many things present as Cushing's that aren't. ;) ) DI can be difficult to test and some vets will simply start treatment to see if that helps; if it does, the diagnosis of DI is assumed. Thyroid dysfunction also presents like Cushing's so I would want that checked out thoroughly as well.

As you might see, diagnosing Cushing's is as much about ruling other possibilities out as it is anything. Cushing's is one of, if not THE, most difficult canine disease to diagnose because so many other things present like it, the testing can and does give false positives/negatives when a non-adrenal illness is present, and then there are those pups who do read the rule-book then go about doing all they can to disprove it so they can watch the humans around them scratching their ears for a change. :p

Please do provide the comments on all the organs seen in the ultrasound and any other lab work that has been done that came back with abnormal values (be sure to include the normal ranges and units of measurement for each value). This sort of info is a great help to us in helping you. Don't worry about length of posts - we LOVE details! :D

There are alternatives to the NSAIDS that aren't near as harsh on the body and if I were you, I would start looking into something else asap. Being on NSAIDS as long as Cocoa has can cause some serious organ damage - primarily kidneys and liver - and both of these organs are among those that can present with Cushing's signs. So in light of the long-term NSAID use, I would want her kidneys thoroughly checked out as well. My Squirt is taking a product called GlycoFlex. It comes in three strengths and she is on the strongest one, the GlycoFlex III. Her back legs are basically pinned together and have been since she was about 1 1/2 - 2 yrs old. She also gets salmon oil daily for inflammation. Others here are dealing with arthritis and other inflammatory conditions differently and I will let them tell you about their stories. ;)

Cocoa, and you, now have another family - here at k9c. We will walk with you every step of this journey, Cushing's or not. We may not always have anything to contribute of value but we are always reading along and holding you in our thoughts and prayers. Never hesitate to ask questions and we will do all we can to help you understand - or we will learn together. I am glad you found us and look forward to learning more as time passes.

Hugs,
Leslie and the gang

[frijole]

Thanks Leslie! I could not for the life of me remember the diabetes insipidus but knew there was a form that could still be considered. Thanks!!!

[Steph n' Ella]

I would be very interested in hearing about your journey with cocoa. Sounds similar to what I am going through with my Ella. Good luck:o

[Cocoa's Mom]

Thank you so much for all the info above. I will ask about diabetes insipidus.

Here's what the ultrasound report said:
"The liver is diffusely hyper echoic and finely textured with and appearance similar to the spleen. The spleen and pancreas are monographically normal. The kidneys and adrenal glands are normal in size, shape and echogenicity. The right measures 7.8mm in thickness and the left 6.3mm. The gastrointestinal tract is normal in wall layering and thickness. No abnormalities are noted in the urinary bladder. The abdominal lymph notes are normal in echogenicity, shape and size. Sonographic interpretation: Diffuse hepatic parenchyma changes consistent with vacuolar or endocrine hepatopathy."

They did do a thyroid test (T4) which was just slightly low (0.9, normal range is 1.0 to 4.0) Her T4 a year ago was 1.5. Prior to that they were in the 2.0 range for several years. She hasn't had any other thyroid tests done, but a lot of her symptoms (panting, seeking cool places) seem more consistent with cushing's to me. But then...who knows??

Here's the wild card that I just found out today, though: They repeated the low dose dex test - and this time it came out differently:confused:. I don't have a copy of the lab results, but here's what the vet said the values were:

T=0 1.2
T= 4 hours 0.9
T=8 hours 2.2

She says this is typical of pituitary cushings. She wants to start her on Trilostane.

I'm really concerned about the cost of the treatment. My understanding is that it will require a number of ACTH tests ($$) and that the med is expensive too. Any suggestions on keeping the expenses under control?

[frijole]

I am curious why they redid the ldds test? If it was negative recently why would they redo it? It doesn't make sense unless they did something wrong with the test and these aren't cheap. Could you please post the results of the first test and tell us the date it was done and the date of the second test?

You are right - treating cushings is not cheap and you do need to keep monitoring it. That is why it is so important to make sure the diagnosis is correct. I am interested in hearing thoughts from other members. I'm still not 100% sold on this diagnosis.

Kim

[Cocoa's Mom]

That is a great question.

When we started this trek, we were seeing the same vet that we've seen since Cocoa was a pup (vet#1). However...back then I was married and had more disposable income, and it was getting very expensive! A friend recommended her vet, which seemed to be much less expensive.

So I took a copy of Cocoa's records, saw this other vet (vet#2), and got a second opinion. The vet#2 said that there were a number of things consistent with Cushing's, and a few things that were not. He recommended (as my first vet did) that we do the LDDS test. So we did it with vet#2 (the LDDS test, that is).

When the results came back, vet#2 was baffled, and I was baffled. My concern was that the test just really didn't make sense, and - truthfully - I wasn't sure how much I trusted vet office#2. They do their own lab work in-house, and the practice is in a sketchy part of town in an old run-down converted house. He seemed like he really didn't know what to suggest to do next. He even suggested that her polydipsia might be psychogenic.

The bottom line: I didn't trust the results of the first test. Vet #1 does not know I even had it done. I called vet#1 and told them I'd like to go forward with the LDDS test, and that's all they know.

So...there you have it. I cheated on my vet :-) And paid for two LDDS tests! Vet#2 was definitely less expensive ($120 vs. $220 at vet#1) but I guess I got what was coming to me by having to have it done twice!

[frijole]

Just from the description of Vet #2's 'home office' I'd rule out their dx :D Cheated on your vet... oh boy have we ever been there! ha.

If you are unsure if your Vet #1 knows what they are doing then they probably don't. Something is wrong and it sounds like you have ruled out cushings (well most likely), thyroid issues and diabetes.

I just reread your thread and from the sounds of the ultrasound the adrenals were all normal and the same size so that also rules out cushings.

Here is some info on diabetes insipidus. It is rare but we have had members that have dealt with it.

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

I'd give some thought to going to a specialist. Is there a vet teaching school in your area? They often are less expensive and have high tech equipment and specialists. That is where I had to go - same issue my dog was misdiagnosed and I threw away thousands of dollars with a vet that was over their ahead and too proud to admit it...

Hope this helps a bit. Kim

[lulusmom]

Hi Cocoa's Mom.

I'm late in joining the party but wanted to make a few comments regarding the symptoms and test results. I'll start with the complete blood count and blood chemistry by noting the abnormalities that are consistent with cushing's in blue below:



- Her glucose is normal. She is not diabetic.
- Her cholesterol is high (347) Consistent with cushing's
- Her liver enzymes are normal. This is unusual for a cushdog but not out of the question. Dog are the only species in the world who have a Corticosteroid Induced Alkaline Phosphatase (CIALP) enzyme so if a dog is overproducing cortisol, that enzyme is elevated. However, a very small percentage of dogs, 5% or less, don't have that enzyme so yes, liver values can be normal in a cushdog.
- Her eosinophils are very low (0%, 2-10% is normal) Consistent with cushing's
- Her neutrophils are high (80%, 60-77% is normal) Consistent with cushing's
- Her urine is very dilute. Consistent with cushing's
- Her abdominal ultrasound showed no adrenal tumors, but did show an enlarged liver. Enlarged liver is consistent with cushing's and not all dogs with cushing's will have enlarged adrenal glands on imaging, especially if early in the disease process. Over time the adrenal glands get really fatty and enlarge. This is called adrenal mass and if Cocoa has cushing's, her adrenal gland will eventually enlarge. Cushing's is the most misdiagnosed canine disease so while Cocoa has a lot of stuff going on that is consistent with cushing's, starting treatment on a dog with a normal appetite and normal adrenal glands does raise eyebrows around these parts.
- Her urine culture was negative (and a round of antibiotics hasn't changed anything, either)
- Her bile acids are high (27 or so, normal is up to 14.9) Consistent with cushing's.




Thank you so much for all the info above. I will ask about diabetes insipidus.

Diabetes Insipidus is a very rare condition. We've only had a few members (I'm one of them) with dogs who were ultimately diagnosed with it. I personally wouldn't chase after a DI diagnosis until all other possibilities are ruled out. Cushing's is a much more likely cause.

Here's what the ultrasound report said:
"The liver is diffusely hyper echoic and finely textured with and appearance similar to the spleen. Consistent with cushing's

The spleen and pancreas are monographically normal. The kidneys and adrenal glands are normal in size, shape and echogenicity. The right measures 7.8mm in thickness and the left 6.3mm. See my comments above regarding adrenal mass

The gastrointestinal tract is normal in wall layering and thickness. No abnormalities are noted in the urinary bladder. The abdominal lymph notes are normal in echogenicity, shape and size. Sonographic interpretation: Diffuse hepatic parenchyma changes consistent with vacuolar or endocrine hepatopathy."

They did do a thyroid test (T4) which was just slightly low (0.9, normal range is 1.0 to 4.0) Her T4 a year ago was 1.5. Prior to that they were in the 2.0 range for several years. She hasn't had any other thyroid tests done, but a lot of her symptoms (panting, seeking cool places) seem more consistent with cushing's to me. But then...who knows??

Low T4 is common in cushing's but it is usually transient and normalizes with treatment. This phenomenon is called euthyroid sick syndrome. If Cocoa had primary hypothyroidism, she would be sensitive to cold, not hot so seeking cool places and panting are consistent with cushing's, not hypothyroidism

Here's the wild card that I just found out today, though: They repeated the low dose dex test - and this time it came out differently:confused:. I don't have a copy of the lab results, but here's what the vet said the values were:

T=0 1.2
T= 4 hours 0.9
T=8 hours 2.2

She says this is typical of pituitary cushings. She wants to start her on Trilostane. That is correct. These results are consistent with pituitary dependent cushing's.

I'm really concerned about the cost of the treatment. My understanding is that it will require a number of ACTH tests ($$) and that the med is expensive too. Any suggestions on keeping the expenses under control?

You can get compounded trilostane but only in doses other than those Vetoryl doses approved by the FDA. Please be sure to read the information in our Helpful Resources section on Vetoryl (Trilostane) so that you understand more about the drug your vet has chosen. You will find information on compounding there as well so please read it before talking to your vet about this. If she is okay with compounded Trilostane, I would suggest that you use a reputable compounding pharmacy. A number of members, me included, have had very good experience with Diamondback Drugs in Scottsdale, AZ. They ship countrywide and their pricing is very competitive. They are used by a lot of vets, including my gp vet and the internal medicine specialists who have seen my two cushdogs.

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

[Cocoa's Mom]

Wow, lulusmom, thank you for all that info!

I should clarify; the reason why I 'cheated on my vet' was strictly financial, not because I don't trust my vet. In fact, my experience with vet#2 has made me trust #1 even more (wow, sounds like a bad romance novel, doesn't it?). I guess you get what you pay for!

I did some reading on DI, and I am doubtful that's it. One other thing that vet#2 did was a 'dehydration stress' urine test. Basically, I withheld her water for an afternoon (monitoring her carefully for symptoms of dehydration, of course) and took urine samples over the course of the afternoon. It was very clear from that test that her kidneys are doing what they are supposed to, as her urine got more and more concentrated over the course of the afternoon.

I will definitely read up on the trilostane info - thank you for the link!

If I've learned one thing already about Cushing's, it's that diagnosing it is a bit like nailing jello to a tree - very hard to pin down :D

[Cocoa's Mom]

Well....Cocoa was started on trilostane today. I am hopeful that soon our house will be a giant pee pad no longer!

I have some questions that I am hoping you can all help me with, though;

1. My vet prescribed the Dechra brand capsules of trilostane. I've read on the website about compounded trilostane, but I'm not clear on WHY you would go with the compounded version as opposed to the packaged capsules? Is it for amounts not available in capsules?

2. Once her ACTHstim tests are at reasonable levels, is it usual for the dog to be taken off of it altogether? Or are most dogs left on a maintenance dose? Seems I've read it both ways.

Thanks for any info you can give me :o

[StarDeb55]

I have not used trilostane but am fairly familiar with it, so I can hopefully answer your questions. My answers are in blue:


1. My vet prescribed the Dechra brand capsules of trilostane. I've read on the website about compounded trilostane, but I'm not clear on WHY you would go with the compounded version as opposed to the packaged capsules? Is it for amounts not available in capsules?
The 2 most common reasons for using a compounded version of trilostane are cost, & the dosage can be compounded into any dose you might need except for the dosages that are available from Dechra. This is especially handy for our little bitty fur kids. As long as you use a reputable compounding pharmacy, such as Diamondback Drugs, compounded trilo shouldn't be a problem.


2. Once her ACTHstim tests are at reasonable levels, is it usual for the dog to be taken off of it altogether? Or are most dogs left on a maintenance dose? Seems I've read it both ways.
I need to explain how the 2 drugs work before I can adequately answer your question. Lysodren works by eroding the adrenal cortex tissue where cortisol is produced. The goal with lysodren is to keep the adrenal cortex tissue from regenerating which will keep the cortisol at the more healthy level of 1-5. To do this, lysodren must be given on maintenance dosing schedule, after the initial loading or induction period. If lysodren were to be stopped, the adrenal cortex tissue would regenerate & start producing unhealthy levels of cortisol. Now, how fast that regeneration may occur depends on the pup. Some pups seem to regenerate the cortex in just about the blink of an eye, others will take longer. Trilostane works totally different than lysodren. Trilo is an enzymatic inhibitor of the biochemical pathway in the adrenal glands where cortisol is produced. Trilo has a very short life in the body of about 10-12 hours, where as lysodren remains active for about 48 hours. Therefore, with trilo, it's necessary to give the medication daily to keep the pathway where cortisol is produced blocked. Stop giving trilo, & that pathway will become active, again in about 12 hours.


Cushing's treatment, no matter which drug you choose to treat your pup with is a life long treatment under normal circumstances. With appropriate dosing, & monitoring of either drug, a pup should be able to live out its expected lifespan with a good quality of life.

Hope this helps.

Debbie

[Cocoa's Mom]

Gotcha. That makes good sense.

I am kind of surprised how many dogs here seem to be on lyso instead. It seems more dangerous, with all the lows and needing prednisone. What would make a vet choose lyso over trilostane in the first place?

Thank you so much for all the answers to my dumb questions :p

[labblab]

Even though you are treating with Vetoryl, I'm hoping that your vet has given you some prednisone to have on hand for Cocoa, too. Although the effects of trilostane diminish in the body after approx. twelve hours for most dogs, there are always exceptions to every rule. And should Cocoa become overdosed on the medication and exhibit ill effects (especially at night or on a weekend :o), for your peace of mind and Cocoa's safety, it is important to have emergency prednisone available to you at all times.

In answer to your question above, I believe that many vets continue to prescribe Lysodren because it is a drug with which they have had excellent treatment success and they see no reason to "rock the boat" by switching to the more recently introduced trilostane. Trilostane has only been FDA-approved in the U.S. since 2009, whereas Lysodren was the treatment of choice for many years prior to that. Therefore, many vets who have been practicing for some time have had more extensive history and experience with Lysodren, and its action is well understood.

Trilostane is the newer kid on the block, and has some attributes that have made it more attractive to some vets, seemingly especially those who are younger and have had less personal history with Lysodren. One of those features is what we have already mentioned -- that for the majority of dogs, a medication overdose may be more quickly and easily reversible than is the case with Lysodren. Since the therapeutic action of trilostane does not involve actual physical erosion of the adrenal gland, it is more likely that a dog will return more quickly to a baseline cortisol level when trilostane is discontinued. So simply discontinuing the medication for a few days may be all that is needed in the event that a dog is overdosed on trilostane. Since the adrenal cortex must regenerate in a dog overdosed on Lysodren, this process may take a longer time and sometimes the regeneration never occurs at all.

Having said that, we know from our experience on this forum that there are some dogs who have been overdosed with trilostane who never return to baseline cortisol production, either, and who may require longterm prednisone supplementation in just the same way as do dogs who have gone Addisonian as a result of a Lysodren overdose. I do not think that even the manufacturers of Vetoryl yet understand exactly what has happened in those situations, and more research is needed (and this may be a reason why some vets prefer to stay with Lysodren). If you read the U.S. Product Insert for Vetoryl, you will see that out of 107 dogs who were treated with Vetoryl during clinical trials, two developed unexplained adrenal necrosis, and two other dogs developed unexplained longterm Addisonian conditions. So there are genuine risks associated with trilostane, just as there are with Lysodren. But I am guessing that for vets who now prefer trilostane, their belief/experience is that the incidence of irreversible Addisonianism is lower with trilostane than with Lysodren. If your dog is one for whom this happens, however, you probably don't give a whit as to the statistics! :o

So to come full circle, this is the reason why we encourage all owners to request prednisone from their vets, regardless of which drug is being used to treat their dog's Cushing's. It is so much better to be safe than sorry -- at all times!

Marianne

[frijole]

Lysodren gets a bad rap because you only hear the bad stories. Bad things happen when vets don't prescribe it right and/or owners are asleep at the wheel and don't pay attention to the signs of loading. It isn't the drug. It has been around for many many years whereas trilostane was introduced to the US within the last 5 yrs or so.

It is often selected because the vet is most familiar with it. Trust me we see a fair share of dogs in distress over trilostane overdosing as well. Again - not the fault of the drug really - human error.

Key to successful treatment is to have an experienced vet and an engaged owner.

Best of luck! Kim

[Cocoa's Mom]

Thank you both for that info. My vet is kind of a young-un (probably in her 30s), so you're probably right on target in the assumption that she has less experience with lysodren.

I'm going to keep my fingers crossed that this all goes well. Seems like there are potential pitfalls at every turn, no matter what I do.

I can't tell you how much I appreciate this website. I have received so much more info here than I have received from my vet. Thank you thank you!

Donna

[Jenny & Judi in MN]

Donna, I've talked to 3 vets in the last month who are all excited that Trilostane is more available in the US now and are using it as the first course of action for Cushings.

It just wasn't widely available over here for awhile I think. Good luck with your pup and I too hope your house is no longer a pee pad LOL

[Cocoa's Mom]

Wow.

So Cocoa has been on the trilostane for 4 days now.

And last night was the first night in months that I didn't have to get up to let her out, or that she did not pee on the carpet. I did a little joy dance right in the middle of the living room.

Coincidence? Or can the med work that quickly? I am hopeful!

Donna

[lulusmom]

Yes, Trilostane works that quickly. Congratulations!

[molly muffin]

Yea for Cocoa. Glad the Trilo is working.

Sharlene

[Cocoa's Mom]

She is definitely still drinking and peeing (and drinking and peeing, and drinking and peeing), but at least she can make it through the night without going on the carpet. That's a huge improvement...for all of us. :D I do think she might be drinking just a bit less.

I am feeling very optimistic!

[sunshinehoman]

HI Cocoasmom!

So glad to hear Trilo is working for your baby!!
My min pin has just been diagnosed and I am still tryig to decide what drug to use.
This forum has saved me! Everyone here is awesome and so helpful and friendly!! It is like having a very special family looking out for you
Keep up the good work!

Shannon & Sunshine

[molly muffin]

drinking and peeing, it's an endless cycle, even when they don't have cushings!!! When they do... well it's just Wet.

LOL
Sharlene

[Cocoa's Mom]

I know, I know! Hopefully once we are sure she is done peeing at night, I can give the whole carpet a thorough scrubbing. I have been spot cleaning each time, but might just have to throw it away and start over. We need to start a string about carpet cleaning techniques!

[molly muffin]

Molly doesn't have the constant peeing or peeing inside thing. She does however have the occasional accident. Like a thunderstorm will bring one on, or if we have people in the house and they are getting all the attention, then she might pee. So far, she has been going downstairs to do this, so I bought one of those Bissell little green machines. It's a hand held thing, and works wonders! When molly was younger and had accidents I had a steam vac. This Bissell though is fabulous. It really gets it all out and using an pet stain/odor remover in it, you'd never know there had been an accident there at all. I have wool rugs upstairs and wanted something that would be really good to clear it up if she had an accident on one of them. It's great!

Hugs,
Sharlene

[Cocoa's Mom]

Well....I spoke too soon. Pee on the carpet for the last three nights!

Still keeping my fingers crossed.

Thank you for the carpet cleaner info! I suspect I will be needing one of those shortly :D

[Cocoa's Mom]

Well, here's an update on Cocoa.

She has been on the trilostane for a month. Although I thought that things were improving the first few days, I was wrong. We've been cleaning up pee and filling up her water jug all month long. I really haven't seen any change at all in her symptoms.

I am feeling a bit discouraged.

She had an ACTH stim test done today, for the first time. Hopefully results tomorrow.

I am wondering - has anyone here had success with the twice-daily-dosing as opposed to once a day? I know that I read that trilostane stays in her system for 12 hours, and was thinking that if it were divided into two doses, she might do better with it.

Can you divide capsules in half, somehow?

Arrrgh.:(

[frijole]

Hi. Going to twice daily might help but I'd wait to see the test results... if you still have urination that frequently I'd guess the cortisol is still quite elevated and you'll need to increase the dosage.. but I could be wrong!

Nope you cannot split capsules. Per manufacturer instructions. Not safe.

Kim

[Cocoa's Mom]

I'm thinking I might try giving her the meds at night instead of in the AM, and that might help with the night peeing. I don't know. I'm grasping at straws.

Sometimes I wonder if this isn't Cushing's after all. Her appetite is so normal, unlike many of the dogs I read about here.

But then, what to make of her low dose dex test, if it's not Cushing's?

Arrrgh!

[labblab]

I can surely understand how disappointed you are feeling, but I agree with Kim -- let's see how those ACTH results turn out. Regardless of the outcome, switching to once daily dosing at night is not a good idea, because it will be impossible to conduct future ACTH tests appropriately. Regardless of whether a dog is dosed once or twice daily, the testing needs to be performed within a window approx. 4-6 hours after a dose of the medication is given.

It may be the case that Cocoa really would do better on a twice daily dose. But let's first see those testing results.

I know it's hard, but hang in there!!

Marianne

[addy]

I can totally relate to being frustrated we all want our pups to feel better as soon as possible.

Sometimes we cant rush the process and it takes some dose tweaking.
LOL, I must win a prize for the most dose tweaking with my Zoe.:rolleyes::rolleyes:

Waiting is hard but you'll get through it just fine.

[Cocoa's Mom]

Wait - the ACTH needs to be done 4-6 hours after the trilo?

They did not tell me that. They did tell me to give her her normal meds in the AM before dropping her off.

I gave her the meds at about 7AM, but she promptly threw up, so she really didn't have her trilo dose that morning.

What do you think that will do to the ACTH results? Would hate to think that we did a $275 test for nothing!

[labblab]

I am sorry to tell you that the test results will be affected if Cocoa threw up her trilostane before testing. Her cortisol level will be higher than it would have been 4-6 hours after dosing. Trilostane only remains active in the body for about 12 hours after dosing, and after that time the cortisol level starts to climb once again. The point of the 4-6 hour "window" is to catch the drug when it is most active in the body, and therefore the cortisol at its lowest point. If Cocoa's last dose was over 24 hours prior to the test, we would expect her cortisol level to be higher than during the time period when the trilostane was active in her body. This is a problem, since the dosing recommendations are based on the expectation that the monitoring ACTH testing is measuring the cortisol when it is at its lowest point -- not its highest point.

Can you remind us -- did Cocoa have an ACTH test performed prior to starting trilostane treatment? If so, what were those results? If she did have a baseline ACTH performed prior to treatment, we may still be able to draw a few conclusions after seeing this new result.

Also, how much does she weigh, and what is her daily trilostane dose right now?

You do need to tell your vet that Cocoa threw up her trilostane prior to the ACTH test. Also, for your future reference, here's a link to U.S. Product Insert for Vetory. It has a lot of important info, such as the timing of the ACTH test. One additional note: trilostane should always be given with food at any time, including the morning of an ACTH test, in order for it to be metabolized properly.

http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf

Marianne

P.S. Was that unusual for Cocoa to throw up -- has she been having stomach problems lately?

[Cocoa's Mom]

Dang it.

I took her in about 7:15, and I think they said they would be done with the testing around 11:00, which means they did the initial injection around 9:00, nowhere close to 4 hours IF she had kept the trilostane down. *sigh* They never even asked me if or when she had taken the medication.

She did not have an ACTH stim test before starting the med. Her diagnosis was based on the low dose dex test. If the ACTH test comes back low...that could possibly be evidence that this is NOT Cushings, wouldn't it?

She weighs about 60 pounds and is on 60mg of trilostane once per day. She does take the med with food. She's not much of a morning eater, but we give it to her in about a tablespoon of peanut butter (I swear she will do ANYTHING for peanut butter) and she also has treats right before after going outside.

Yesterday was the 2nd time she has thrown up since starting the medication. She is not usually one to throw up easily. I know that can be a side effect of trilostane, and it wasn't happening often, so I hadn't worried about it too much.

She really hates going to the vet, so my heart is breaking that I put her through this for nothing :(

[labblab]

I am really surprised your vets did not ask you what time Cocoa had her medication. It is a shame they did not, because the testing could have been halted beforehand.

For what it's worth, if Cocoa HAD taken her medication without any issue, the results of testing 2-3 hours afterwards would still have been useful. In fact, some clinicians and researchers (such as the vets at UC Davis) prefer testing within that earlier time frame, as opposed to Dechra's recommendation. Since trilostane supposedly reaches maximal effect after approx. 1 1/2 hours, the earlier testing time frame should still catch the cortisol at its lowest point. But that will be a good question to ask your vets in regard to future testing -- what time frame are they wanting to test within? Because you want all the monitoring tests to be performed consistently within the same window of time in order to make direct comparisons.

Since Cocoa had been taking the trilo consistently for a period of time prior to the morning of the testing, I don't think you can draw conclusions about the accuracy of the overall Cushing's diagnosis from her test results. After missing only one day's dose, I doubt that her cortisol would have had the chance to fully rebound to her pretreatment diagnostic level. So the big question will be whether or not the results can offer any guidance as far as current dosing. Let's see what they turn out to be...

Marianne

[molly muffin]

Lets just see what the results are and then have a better idea of whether or not Cocoa kept down the Trilostane or threw it up. Do you go into pick up the results? If so, just let the vet know then that there is a possibility that it was thrown up.

Try to have a good weekend. :)
hugs,
Sharlene

[Cocoa's Mom]

Hi, all -

Well, it's been a very long month.

Cocoa's ACTHstim test came back normal (don't have the numbers, but was told this by my vet). Interesting, since she didn't have any trilo in her system for over 24 hours.

Cocoa was on the trilo for almost two months with no change in her polyuria/polydipsia symptoms. It really wasn't helping.

Our vet is perplexed by Cocoa's case. She referred us to the Colo State University Vet School for an internal medicine consultation.

The experts at CSU are also perplexed by her case. They do not think she has Cushings. They do not think it's her liver. None of her labs are really consistent with anything in particular.

They did repeat the ultrasound, and also did a series of chest x-rays. The ultrasound showed the same thing as the first one did (mildly hyperechoic liver). The chest radiographs were normal.

Their best guess at this time is that either;
a) she has a macroadenoma in her pituitary and needs a higher dose of trilo (but thought this was unlikely given the inconsistency in her labs)

b)She may have a brain tumor of some other sort causing her polyuria/polydipsia.

At this point we've stopped the trilostane (if it's a macroadenoma, her symptoms should get worse, which they have not done in the week since she's been off it, making the macroadenoma possibility unlikely).

We may try to repeat the bile acids to see if they've changed. If they went up, it might be worth doing a liver biopsy. But they still really don't know why her bile acids are high but her liver enzymes are normal.

As for the brain tumor possibility...only time will tell. Unless we want to do an MRI ($$$) we just won't know. Even if she does, doing the MRI won't really change the course of things. We're not going to put her through brain surgery.

So for now, we'll just take it day by day and see how it goes. Not much else to do about it. I'm feeling kinda sad about it, since she seems to be getting more and more quiet and inactive as the days go on. But all I can really do is love her and make her comfortable and see what the future holds.

And...keep buying pee pads :D

I truly appreciate all the help and support you've all given me here. I found out more information through this group than I did in all my online searching.

[molly muffin]

okay, so, this really isn't a horrible thing. Not having cushings is probably good. Not probable being a macro is good. Maybe being a different tumor is not good, but it's also not a given and only time will tell. Just see where time takes her and what happens. Just love on her and buy those pee pads.

And do Not go anywhere. Not sure if you got the memo or not, but once you walk in the door and pull up that chair, it's yours for the duration. :) Whatever happens, we will all be here. Good times and bad, sounds like a marriage doesn't it. hahahaha Do you take Cocoa to support now and forever till death do you part? You Bet! :)

HUGS and buy stock in pee pads!
Sharlene

[Cocoa's Mom]

Thank you, Sharlene - you are so sweet. Your post made me a bit teary :o. You are right - she is not in any kind of pain, and she is definitely a well-loved dog, so I need to just stay positive!

[Steph n' Ella]

Yes, yes...welcome back! As I said on page 1, I am very interested to hear about how things go with Cocoa since she sounds a lot like my Ella girl. We too just got confirmation this month after doing LDDS that she doesn't have Cushings either. But the PU/PD still remain. I am glad you are going to CSU and getting expert care. We are now looking in to diabetes insipidus. Also, IMS wants to continue to monitor blood work...especially calcium levels and kidney function. Good luck!

[molly muffin]

awww, glad you are maybe feeling a bit better. This forum has turned me into a regular water works plant. My husband has repeatedly threatened to cut internet access because I'll be at my computer with tears streaming down my face. (no worries, he's in telecom, internet isn't going anywhere!)
But none today now, no can do, at work with dark eyeshadow and mascara on, so no tears, only really super duper happy msgs and nothing mushy, happy mushy can make me cry too.
Otherwise, folks at the office are going to get an early preview of my halloween outfit. (which I really don't know what is, but they don't know that)

Now, seriously, I know how hard it is to stay upbeat all the time, so we're here to help you do that and still be realistic about what is going on. So, day by day, more tests probably in your future and we'll just hope to get it figured out. Don't panic though. :) I don't have my molly's situation figured out by any means. I am worried about liver disease and all sorts of things. Sometimes I look at her and cry because I worry something is wrong and we don't know what. Then I have to stop and get hold of myself and say, come on, lets just go take a walk and put these thoughts away for now. We just do what we can to get through ya know. :)

hugs,
Sharlene

[Cocoa's Mom]

Hello, everyone - just an update.

As I write this, I am sitting in a Starbucks near the CSU vet school. We're here for (you guessed it) more testing!

After visiting CSU last time, they were doubtful that Cocoa has Cushing's. They recommending stopping the trilostane, which we did.

Then, about a week later, her peeing INCREASED, and her drinking increased from 5 gallons in 5 days to 5 gallons in 3 days, and she is now peeing multiple times at night (instead of just once).

They feel that the fact that her PU/PD increased when she stopped the trilo is evidence for Cushing's. (!) What a merry-go-round this is!

In the meantime, her bile acids were rechecked and were normal. That rules out her liver as an issue.

So we're having another ACTH stim test (she has only had one in the past, and that was while she was on trilostane, which was normal). And they might do another dehydration test. They wondered if maybe she is just one of those dogs that doesn't reply to trilo and would be better treated with lysodren.

Does anyone know if that's a common problem? Not responding to the trilo, that is?

***deep sigh****

Donna

[addy]

Wow have you been on a roller coaster of a ride, I am so sorry.

I cant comment but hopefully others can and will. I just wanted to stop in and give you a hug and moral support.

There are a small group of dogs who will not respond to Trilostane.

[molly muffin]

There are some dogs that respond better to one drug than another one. There is a tapering off period prior to starting the new drug though. So others who have been down this road can better comment on that.
This thing, cushings, seems to be very tricky. When do you get test results back?

hugs, hang in there,
Sharlene

[Cocoa's Mom]

I heard back from the vet last evening - they ended up doing a LDDS test instead of the ACTH. She said the results were classic for Cushings (sorry I don't have the numbers).

The theory right now is that she may be one of those dogs that either needs a higher dose of trilo, or for whom twice-daily dosing might work better.

So...we're going to try 30mg of trilostane twice a day (as opposed to the 60mg once a day which apparently was helping her symptoms but not entirely controlling them). Unfortunately this means twice the cost, but at this point we've come to far to not give it a try.

Somehow I feel like we are on the right track with this, though. And I have a boatload of confidence in the doctor that I'm working with. I really like the fact that at CSU they do grand rounds where everyone chimes in with different ideas. I feel like I have a whole team of doctors working to get her better!

I cannot believe we've come full circle on this and are back on the Cushing's path!

[molly muffin]

oh geez it is like a huge circle. That is wonderful that you have a good team you feel comfortable with. Hopefully the twice a day will do the trick. It sounds like it might be the very thing needed. It often is. Are we singing On the Road Again :-)

Hugs
Sharlene

[molly muffin]

Merry Christmas Donna to you and Cocoa.
Hope things are going okay and that you have a safe and wonderful Holiday.

hugs,
Sharlene and Molly Muffin

[Cocoa's Mom]

Merry, merry Christmas to you too, Sharlene! I hope all is well with you, and best wishes to you and your family, including the fuzzy family member! :-)

Donna

[Cocoa's Mom]

Hello, all!

It's been a while since I've been here. Thought I might post an update. I'm having kind of a 'down day' in that I'm feeling kinda hopeless that we are ever going to get this puzzle solved.

Cocoa went on trilostane 30mg twice a day last November. It really improved her ACTH stim, but did absolutely nothing for her drinking/peeing/drinking/peeing/drinking/peeing.

Since December, she has had three UTI's. Treated the first time with Clavamox...it came back just a couple of weeks later, so we did a longer course of Clavamox...and then it came back yet again a week after stopping the antibiotics, so she is currently on Baytril. Her 1-week culture came out negative, so my fingers are crossed.

In the meantime, we've been brainstorming why her PU/PD isn't any better.

One thought is that she has central diabetes insipidus AND Cushing's. There are reports in the literature of dogs with both. Basically, the same macroadenoma causing her Cushing's could be causing CDI. That kinda makes sense to me; she has never had some of the classic Cushing's signs, such as ravenous hunger, so it wouldn't be too surprising to find out that something else is in the mix.

To test this out, we're going to do a trial with the vasopressin drops after her UTI is cleared up. We haven't gotten to that yet.

Another thought is that although her ACTH stim tests are good, that she may be having fluctuations that the test isn't picking up at night. To check this, we did a urine collection (at home) and did a urine cortisol/urine creatinine ratio on a urine sample that was actually a combined sample collected over 24 hours.

I just picked up that result. It was high (86). Arrrgh! I just emailed my doctor with the results, but I suspect she will want to up the trilostane dosage, or maybe do more testing.

Cocoa also has hip dysplasia. She is having a really hard time getting up the stairs lately. They told me to expect this, since as her cortisol levels go down, her hip pain could go up. Looks like they were right.

To top it off, I came home today and she threw up on the carpet. She hardly ever throws up. And she's not drinking much today, which is a big change from normal.

I feel like my poor sweet pup is spiraling the drain and there is not much I can do about it. It makes me really sad.:(

[molly muffin]

Donna! It's wonderful to hear from you but I'm very sorry to hear that Cocoa is having so many problems. Hopefully the Baytril will have done the trick to get rid of the persistent UTI. I'm wondering if maybe it was just a type that was resistent or not geared to respond to the Clavamox.
Some dogs don't always get over the drink/pee symptom, but have you had a thorough kidney panel done on her? Everything including UPC. It could be that she is having some kidney problems and this is why that has never cleared up? There are some options for the hip issue, like acupuncture, laser therapy, etc, and of course pain shots for it.
This is so hard to go through and to see your baby not doing so well is disheartening. That is when you need to pop in here and get some much needed cyber hugs! So, HUGS!!! :)
I'm sure the others will be along too. They'll have missed you also you know.

hugs,
Sharlene and Molly Muffin

[addy]

It is easy to feel like that when you are on a roller coaster with multipe issues to deal with, so I know what you mean.

When was Coco's last ACTH test and what were the results?

[Cocoa's Mom]

Thank you for the cyber-hug, Sharlene - I needed it!

Addy, her last ACTH stim was in early January. Her pre was 1.18 and her post was 4.62. She is due for another this month.

Do you know if CDI can cause an elevated UC/CR? What else other than Cushing's and stress can cause it?

[molly muffin]

Hi, checking in on your and Cocoa. How are things going? Did that nasty UTI respond to the Baytril? Hope it is all gone.

Thinking of you
Sharlene and Molly Muffin

[Cocoa's Mom]

Awwww, thanks for checking on us, Sharlene. Cocoa seems to be responding well to the Baytril. Of course, she also responded well to the Clavamox until the UTIs came back a week later :confused: We have about a week more on the Baytril and then a week later before we go back for a culture. She'll have a stim test done at that time, too.

In the meantime, she just keeps drinking and peeing, drinking and peeing :D

[Cocoa's Mom]

Hello, all -

Just thought I'd post an update.

We finally got rid of Cocoa's UTI (after 3 rounds of antibiotics) - hallelujah! The Baytril worked.

After the UTI was resolved, we did another ACTH stim test. Because of her ongoing peeing and drinking (despite previous ACTH stims being normal), uur vet suspected that her Cushing's was not as well controlled as we hoped, and was thinking of adding a 3rd dose in the middle of the day.

Her stim came back...1.0 pre and 2.0 post. Pretty good control, I'd say!

So, we started talking about diabetes insipidus again. Apparently there are some reports in the literature about dogs with both Cushing's and CDI. So we decided to do a trial of desmopressin (DDAVP), which is administered as an eye drop twice a day.

After only 3 doses of DDAVP, her peeing and drinking have decreased HUGELY. Her pee is actually yellow again (she has been peeing basically water for the last year). And her water consumption is waaaay down (usually she drinks close to a gallon a day - yesterday she drank about 30 oz).

So preliminarily, it looks like she has Cushings AND CDI. And it's likely that the same tumor that is causing her Cushing's is also causing her CDI. Who knew???

I am feeling more hopeful than I have in a looooong time :-)

Does anyone know of any other members on this forum whose dog has the same thing? I searched but had a hard time finding any?

[Squirt's Mom]

One of our older members had two dogs with DI - here is a link to their thread -

http://www.k9cushings.com/forum/showthread.php?t=352

[molly muffin]

Hi Donna, so glad that you got that nasty UTI cleared up finally and have also figured out what is going on with Cocoa. Isn't it a relief to at least know what you are dealing with.

Hugs,
Sharlene and Molly Muffin

[Cocoa's Mom]

Hello, everyone -
I haven't been here for a while, but this forum is where I learned all about Cushing's disease in 2012 when my pup was diagnosed. It was such an invaluable source of information and comfort at that very confusing time! I appreciate all that the group's members did for us.

We had to put Cocoa to sleep two days ago. She was 12, and in addition to her Cushing's disease, she also had diabetes insipidus, severe arthritis and soft tissue sarcoma. The cancer is what eventually overtook her. Putting her to sleep was the hardest thing I've ever done, and I miss her so much. She was just the most wonderful dog I've ever known.

Thank you again for everything you did for us when she was first diagnosed. This is an amazing resource for those struggling with the issues related to Cushing's in their pups.

[spdd]

I certainly know how you feel... here I am 1 1/2 yrs later and miss "mah boy" every single day.
They take a huge piece of our heart with them and my sincere condolences go out to you.

[Joan2517]

Oh, I'm so sorry, Donna...it is such a hard thing to do, even when it's the right time. I miss Lena all the time and wish I could go back and start over. Sending consoling thoughts your way....

[Harley PoMMom]

Oh Donna, I am so sorry for your loss of dear Cocoa and my heart goes out to you at this most painful time. Please know we are here for you, always.

With Heartfelt Sympathy, Lori

[judymaggie]

Donna, my condolences to you on the passing of Cocoa. It sounds like she had a lot to deal with and you did the brave thing in letting her go. Take care of yourself during this difficult time.

[molly muffin]

Donna I am so sorry to hear this.

My sincerest condolences on your loss.

[Allison]

Belated hugs! I've been away from this forum for a couple of months, but wanted to say I'm sorry for your loss of Cocoa. Twelve years will have given you a lot of special moments.

To a certain extent, your journey with Cocoa sounds somewhat similar to the one we had with Gizmo. He had Cushings but also a host of other ailments. Pancreatisis seems to be what finally wore him out. It still hurts to think of this little dog with such zest for life turning into a dog that stopped wanting to walk or eat.

I discovered this forum about a year ago. You're right that it's an amazing resource with wonderful people.

[budindian]

So sorry for your loss, its never easy to lose someone we have loved and cared for.