REMY diagnosed last week

[Remy’s Mom]

Hello Again, I used to be here as “Amanda’s Mom”. She had an adrenal tumor which was successfully removed and she lived another year of so before passing away from CHF. This time it appears to be the pituitary form. We adopted Remy four years ago. He is just now turning 11, a rescued Bichon and came from a backyard breeder after the man passed away. His teeth were beyond deplorable and he was never socialized. Even four years later he has only bonded with my husband and remains afraid of pretty much everything. I have wondered if the stress he lives with might even contribute to his Cushings. Remy always had high liver enzymes and we had an extensive work up in Feb 2018 including a liver biopsy, cortisol levels, bile tests, copper storage disease and liver shunt testing. The internist felt since he wasn’t having any clinical symptoms it was likely some chronic form of inflammation. Treated with prednisone for awhile then eventually discontinued. Never reached ‘normal’ liver enzymes levels. He was always a picky eater, a grazer and not at all food motivated. We would throw so much food away as it would sit all day untouched. In December I noticed he was actually looking for his food and eating it all up. Sometimes he’s looking to see if Angel has left him anything in her bowl. He isn’t ravenous, but definitely eating like most normal hungry dogs do. He has developed a pot belly and I feel his coat is a bit thinner. It was always horrific to get a clipper thru and I noticed at his last grooming it doesn’t seem as thick. He seeks out cool places such as the tile floors but he’s always done that. At night even with our bedroom chilled to around 66 and a fan over him he puffs and pants much of the night. He is sluggish and not at all active but he’s always been that way. He refuses to take walks or show any signs of being interested in activity. Favorite thing is a car ride or to go to bed. We have not had any increased drinking or peeing (yet!). But I felt there were enough changes to warrant asking about Cushings when he had his semi annual senior blood work. The vet ran a comprehensive panel plus urinalysis 2/7/20.
Liver Enzymes were more elevated than ever ALT 714, ALP 772, AST 58, GGT 60, TP 7.6, Cholesterol 443, Glucose 143, platelets 617, T4 1.8, urine protein 1+. He also did another ultrasound and both adrenal glands seemed slightly enlarged. The liver is also somewhat enlarged and hyperechoic (as it has been for several years).
ACTH performed 2/14/20, precortisol 7.8 and post cortisol 24. PIcked up trilostane yesterday with recommend dose 20 mg. Per day either as one dose or two 10 mg doses. Remy is right at 18 pounds. Do you think the two doses is preferable? As long as he’s eating we’re fine. But if he reverts to the old grazing and picky behavior that may complicate things.

I feel he is early stage with mild symptoms so I certainly don’t want to overdo the trilostane. You are a very smart group so I welcome your suggestions. My past experience with Cushings was 23 years ago and more recently Amanda a few years ago but removal of her Adrenal tumor effected a cure and she never did have any clinical symptoms. Remy’s liver situation has always been a concern but the internist felt until he actually exhibited clinical symptoms of something we were throwing money away to continue testing.

We have one other dog, our 14 year old rescue toy poodle Angel. She also has highly increased liver enzymes and TP and pretty much always has. She is missing a lobe to her liver and she is on chemo for Transitional Cell Carcinoma. We are just about at the one year mark and on our second chemo protocol but so far so good. Just started seeing some blood in her urine once in a while but as of 3 weeks ago there was no progression of her disease. We caught it exceptionally early and she has done well with no ill effects from the chemo. I know that isn’t going to last however so I am figuring out the next steps for her as well as for Remy.

I am aware of the team at Washington State University who has been successful with pituitary tumor surgery and it wouldn’t be out of the question but there are many factors including his ever present liver inflammation, his age and the risks of this yet rare surgery. Needless to say, life is consumed with my furry kid’s issues and I welcome your suggestions, comments, etc. Thanks so much to everyone here!! Claire

[Joan2517]

Hi Claire! It's so nice to see you again, but sad for the reason. I am also going through Cushing's again with my big guy, Gable. I don't have any answers for you, but just wanted to say hello. Joan

[Remy’s Mom]

Hi Joan so nice to hear from you too!! So sorry to hear you are ‘at it again’. Sometimes it seems we are simply given those who need help the most sometimes repeatedly. This is my third Cushings, second with Transitional Cell Carcinoma and lost two boys to resistant kidney infections in the past few years. I hope things go well for Gable. It’s such a frustrating disease for sure!! Claire

[labblab]

Welcome home again, Claire! I want everybody to know that Claire deserves a standing ovation for her patience and perseverance in returning to us. Due to some weird glitch with our forum software, she’s been unable to log back in under her original username of “Amanda’s Mom.” But thankfully, we’ve finally gotten her re-registered in conjunction with Remy. In case anyone wishes to revisit Claire’s postings re: Amanda and her successful adrenalectomy, here’s a link to Claire’s original thread:

https://www.k9cushings.com/forum/showthread.php?7570-Amanda-Update-Adrenalectomy-11-4-14-Amanda-is-free-now

Also, in looking back, I’m remembering that Claire had also started a different thread about Remy and his socialization challenges back when he was first adopted. So here’s also a link to that thread, too, with a lot of very valuable suggestions and experiences related to behavioral shaping:

https://www.k9cushings.com/forum/showthread.php?8053-Help-with-Former-Breeder-Shelter-Dog/page6

Reading through both those threads highlights Claire and her husband’s incredible ongoing devotion to their rescued babies. A huge “Thank you” to both of you for your love and your grace and your kindness to animals in need!

Finally, circling back around to Remy’s current situation, I can’t disagree with any of your internist’s suggestions thus far. I think you’ve been on the right track, and I also would have been cautious about leaping into treatment earlier. Now that you’re going to begin, I guess my only “different” suggestion would be to start off even lower than the 20 mg. Since you have 10 mg. capsules, you have the luxury of being able to introduce Remy’s body to the effects of the medication even a bit more gradually. If Remy were my own, I’d talk with the internist about starting with one 10 mg. capsule each morning for at least the first week. If all goes well, you then can consider adding the additional 10 mg. Or, if you might even wait until the first monitoring blood test before doubling the dose. Remy may well need the extra dosage, but time after time here, we’ve seen that dogs tend to exhibit fewer unwanted side effects when they start at a relatively low dose and work upward only as needed, rather than vice versa.

If and when you do increase to 20 mg., I’d suggest going whichever dosing route best suits your own schedule and Remy’s eating habits. Trilostane needs to be taken along with food to be metabolized properly. So if you choose to dose twice daily, then you need to arrange food intake alongside each dose. Different studies supply pros-and-cons for both once and twice-daily dosing. If one dosing pattern initially better suits Remy’s routine, though, I’d start with that. Once again, you can always make adjustments as you go along. For instance, if you start out dosing only once a day but it appears as though symptoms are rebounding before the day is over, you can always try switching to twice daily dosing.

OK, I’ll go ahead and post this much of a reply for now. But I’ll definitely be checking back to add more thoughts as they arise!

Best wishes to you and all your family, Claire ;-)
Marianne

[Remy’s Mom]

Marianne thank you so much for your help getting back on the forum and also for the very warm welcome!! I especially appreciate your comments on starting with the lowest dose (10mg). This vet is not an internist (the one who worked Remy up previously moved away sadly) but this Dr was working along side him during that time. Still, internal med and especially endocrinology is a complex specialty and I may take him to LSU for a consult. Thought I’d see how this goes though. Especially since the ACTH wasn’t all that high and his ‘clinical symptoms’ are very minor at this point I like the idea of 10 mg once a day to start.

I had forgotten I had gotten into Remy’s socialization issues and sadly, they haven’t improved much although he barks and growls at me a bit less :). I often wonder if the fear he lives with might contribute to overproduction of cortisol simply because he is so nervous. It’s like he’s always ‘on guard’ and fearful that someone or something is going to harm him. So sad but I really don’t want to try any more drugs since they run the risk of increasing is already elevated liver enzymes.

I miss my sweet Amanda but I’m so thankful I was able to have her for a couple of years. Her adrenal surgery which I agonized over was a complete success and saved her one less complication in her precious little life. Being blind and with heart failure was quite enough.

We lost Pork Chop last January, my second with a resistant UTI which turned into kidney infection. I keep asking WHY? Why does this happen to these boys?? With Pork Chop it was. Klebsiella, Peyton had Pseudomonas. And then a month after Pork Chop, there’s Angel with Transitional cell carcinoma. UGH, sometimes the stress of wondering if I am attentive enough, making the right decisions, catching things quickly enough becomes a bit overwhelming. The support one finds here is so amazing and the kindness of all of you who have been down this path is such a blessing!! Love you all!!

[Squirt's Mom]

Hi Claire!

So glad to have you with us again tho I am sorry it is with another cush pup! However, you know you are in the very best place for Remy. ;)

I can't add anything to what Marianne said but I did want to address a comment you made. You said -
UGH, sometimes the stress of wondering if I am attentive enough, making the right decisions, catching things quickly enough becomes a bit overwhelming.

I think guilt is part and parcel for those like us who seem to be magnets for these little souls who need so much more than the usual level of attention. Especially if they have been with us for a while before they get sick. I always find myself asking "what was it that caused my baby to get sick this time?" or "what early signs did I miss?" or "what could I have done different?" But the very fact that we ask these questions of ourselves simply means that we are the right ones for the job, we are the ones who will go that extra mile to learn and do what we can to help them live the best life possible. Coming back to us with Remy says the same things. I also believe that is why we end up with more than one cush pup or more than one dog with cancer or _________ - the dogs know that we will do our utmost on their behalf. Remy knew you were meant for him. All of your babies have been ever so lucky to have landed in your home and they all knew they would be loved thru everything that came along by two wonderful humans. So remember this when you start wondering if you _________ and don't let the what-ifs or maybes get under your skin (and I know how hard that can be at times! :o ).

Hugs,
Leslie

[Remy’s Mom]

I”m not sure I’m doing the replies right Leslie but hopefully you get this. I very much appreciate your thoughts. It is terribly difficult at times, an awesome responsibility to be on top of things and be attentive. Dogs can be such stoic creatures they don’t always make it easy for us.Life gets in the way too when we become overwhelmed by other responsibilities such as family or children. I do truly understand how important it is to be vigilant and not to simply trust that our veterinarian will ‘catch’ things. This is not a knock on veterinarians at all. Like most medical professionals they have many patients and not nearly enough time to devote to them. They too have their lives to live and other responsibilities. I know most do the best they can. I do wonder why I have so many repeat issues, is it simply coincidence or am I doing something wrong? This is #3 with Cushings. I’ve had 3 blind poodles and Angel’s vision is deteriorating fast too. Two males with life ending UTIs despite getting them in for treatment very early on. I have learned and cannot reiterate enough how important early detection is. So many things have similar symptoms and it is very easy at times to mistake one for another. So hard not to become overwhelmed, even consumed by trying to figure things out and keep everything straight.A forum such as this is such a Godsend and I thank all of you from my heart for the time you volunteer to help us benefit from your wealth of knowledge, compassion and support. Bless you all for your service, and it IS a huge service to us and our beloved fur kids!!

[labblab]

Claire, just wanted to reassure you that you’re replying exactly correctly! :-)))

So just keep on keepin’ on ;-).

Marianne

[Remy’s Mom]

Thanks Marianne. Remy is on day 2 of the Vetoryl and I’m sticking to the 10 mg for now until we see how he does. So far he seems just fine. I did realize I don’t have any prednisone here apparently. I think I should ask for some just in case of a crisis. I would rather have it and never need it. Since Remy didn’t have much in the way of clinical symptoms it may be a bit tricky to know how he is doing until we retest.

I sure wish there was a similar forum for canine cancer. I have yet to find anyone as knowledgeable and supportive as all of you here!!

[Remy’s Mom]

Day 4 and no problems at 10 mg. Can’t say I’ve noticed any changes in Remy’s behavior either. He was panting quite a bit last night so I turned the overhead fan on and that seemed to help. Water consumption and peeing haven’t been an issue with him so nothing to report there. I think I will continue at this dose until Friday which will be a full week and see where we’re at. I will be open to advice as to whether or not to go up to the prescribed 20 mg dose. Thanks to everyone!

[labblab]

Hi Claire,

Certainly glad that Remy hasn’t shown any ill effects! How about his appetite — have you had any new problems with getting him to eat? Also, when is your vet wanting you to schedule the first monitoring blood test?

Marianne

[Remy’s Mom]

No change in appetite. He’s still eating happily. We are going to retest after two weeks.

[Joan2517]

I think as long as Remy seems okay, I would leave him on the 10mg until you test. Gable was doing so well, I thought, on 30mg and then started drinking and panting more and I almost raised it back to the 40mg because we all thought he had room. Turned out it was just the opposite, he had dropped to .4 or .5 because of too much thyroid medication. It's a good thing I didn't raise it without testing.

He's been on 5mg now for a few months (he's 75 lbs) and even though he still drinks loads and pees like a racehorse, he's doing good. The panting has finally subsided, he's still got a good appetite and in the last few days he's been going 5 - 6 hours without having to go out at night. His fur has come back beautifully and I feel like he's doing better. I will test him again in the next couple of weeks to make sure.

After that scare with the drop in cortisol, I won't make any changes without testing. I think the key is how well we know our dogs. We watch for those little signs that only we would know are off. If something doesn't seem right, I'm off to the vet. I did that with Lena, but wasn't as aware then as I am now, that they don't always know as much about Cushings as they like to think. I don't think that Gable would still be alive if it wasn't for this forum. I'm sure they would've started him at a huge dose and I wouldn't have known better and gone along with it.

[Remy’s Mom]

Remy’s actual dose was supposed to be 20 mg but I started with 10mg on my own until we see how he does. What makes it hard is he has very minor symptoms. No drinking or peeing at all beyond the normal. He was always a very picky eater and started to eat normally which is what concerned us. A little pot belly and somewhat thinner coat and night time panting is about it for symptoms. And really, he has done the panting at night for a long time. He insists on cuddling up to a faux fur blanket and gets too hot I think. But still, even a slight change was enough for me to consider Cushings and I’m glad we tested. I think since he has such mild symptoms, it isn’t going to hurt him to wait another week and retest and see where we’re at. My biggest concern is his liver enzymes which were pretty high but he’s always had elevated liver enzymes without clinical signs. So I think as long as they are retesting the ACTH we will do liver enzymes as well and see if there is any change. I’m glad Gable is doing pretty well now. Good thing you followed your instincts! For me, it’s bizarre to have a Cushings positive dog that doesn’t pee much. Remy can sleep 11-12 hours go outside and just lay on the porch. We have to prod him to ‘go potty’. I also want to be sure this IS Cushings and not just some minor bump in the ACTH. I am going to pick up some prednisone to have on hand in the event of a crisis and I think keep him on the lower dose until we know for sure where he’s at. You are absolutely right, they don’t know as much about Cushings as we would like.

[labblab]

Hi again, Claire. I very much agree with Joan’s suggestion to just leave Remy’s dose “as is” until your first monitoring ACTH. Even though the general recommendation is to leave an initial dose unchanged for the first 30 days (cortisol levels can continue to drift downward during that time), if his cortisol level is still extremely high next week, you may decide to go ahead and increase since he started at a rather low dose to begin with. Here’s some related info that you might find helpful — I just added this reply to another new member’s thread, so I’ll go ahead and repost it here, too ;).



Also, if Rex is being given an ACTH stimulation test next week to monitor his cortisol level, it’s important that he be given his morning dose of trilostane along with breakfast, as usual. He should not be fasted before taking the test. This is because trilostane needs to be given along with food in order to be metabolized properly. If not, the monitoring test may falsely indicate that his cortisol is running higher than usual. As Leslie has written, dosing increases are usually not made until after 30 days, regardless. But with every monitoring test, we want the results to be as accurate as possible.

Here’s a link to a publication printed by Dechra, maker of brand name Vetoryl. At the bottom, you’ll see a flowchart that shows you how dosing decisions are made based on monitoring ACTH tests. I think this info may be helpful.

http://www.dechra.us/Admin/Public/Download.aspx?file=Files%2FFiles%2FSupportMaterial Downloads%2Fus%2FUS-046-TEC.pdf
Marianne
As far as Remy’s liver values, this is probably way too soon to expect to see any change. It can take quite some time to see a significant impact with those, and some Cushpups never have their liver values completely return to normal range even while being treated. So don’t get discouraged if you don’t see quick improvement there, OK? I think you guys are doing great for right now.

Marianne

[Remy’s Mom]

Remy’s ACTHwas 7.8 and 24 so not too terrible so I’m comfortable sticking with the 10 mg. Don’t know what his vet will say but I believe the thinking here is sound. He is virtually asymptomatic and I see no harm in giving the trilostane at the lower dose for a bit. I appreciate the information regarding the liver enzymes. His ALT and ALP were both in the 700’s. I know Angel’s can go up and down like a roller coaster but when hers are medication driven it can take weeks for them to decrease. With her we found one drop of neopolydex eye drops was enough to keep her liver values elevated for weeks. I know changes to his liver and gallbladder are very mild and we do an ultrasound at least every six months. In the four years we have had Remy he has never had normal liver values so I won’t panic. :). Thanks so much! Such a wealth of information here!!

[Remy’s Mom]

We just got the test results from Remy’s first follow up ACTH. Pre 6.1 and Post 7.6. Prior to Vetoryl he was 7.8 and 24. So we will stick with the 10 mg dose once a day for the time being as it seems to be controlling his disease. VERY glad we started with the 10 mg dose!! Other than maybe a slight decrease in his panting I don’t see any changes but his ‘symptoms’ were really marginal to begin with. I’m hoping he will keep his appetite and not return to being Mr. Picky Eater!! Will keep you posted!! As always, a big thanks to everyone for the help and support!!!

[labblab]

I think this is a great report, and yes, I’d definitely stick with the same dose for now.

Thanks so much for letting us know!
Marianne

[Joan2517]

Wonderful, Claire!

[Remy’s Mom]

I was very pleased to see him respond so well on a minimal dose. Hopefully he will do well at 10 mg per day. Doctor did up his amlodipine to control his blood pressure though. Also, Angel had a good report from her oncologist Monday. Her bladder cancer remains stable!! It was a year ago on March 1 that we first suspected TCC and she has had a fantastic year! Now if I can just keep Remy doing well too!! Hugs to you and your fur babies. Hope Gable is doing well!!

[Remy’s Mom]

An update on Remy. He went in for ACTH test yesterday. Result: Pre 6.0, post 6.6. His doctor feels he is very well managed and doing great! He’s back to being a picky eater and no issues with excessive water consumption or urination so everything looks good!! So glad we caught this early and 10 mg once a day is doing the trick.

Meanwhile toy poodle Angel is at LSU for ‘possible’ pancreatitis. She has always had liver issues and also has transitional cell carcinoma but had been doing very well until the past few weeks when inappetence set in. Everything looks good on ultrasound but test for pancreatitis showed a slight elevation (430) even though pancreas appears quite normal. They may keep her for a couple of days of fluids and IV meds. I hate the thought of that but we will do whatever is best for her. She has been on chlorambucil for seven months (metronomic chemotherapy) so we may also give her a brief break from her medication to some if the inappetence has improved. There has been no progression of the TCC since last September and if it is pancreatitis the hospital is the best place. At least Remy is doing great and hopefully my little fur family will be back together soon!

[Squirt's Mom]

Glad to hear our Remy is doing so well and pray the trend continues! I will also keep Angel in my prayers for a swift recovery so that she is soon back home where she belongs. You have your hands full, Mom, and are doing a great job!

[Remy’s Mom]

Thank you so much! Prayers are always appreciated!! Little Angel is home. She wouldn’t eat at the hospital but I got some GI diet food down her at home. Granted she looked at me with disgust when I offered but I am holding firm! We will schedule an Internal Medicine consult for her to see if we can figure out what’s going on. Things are up in the air with the Covid-19 situation affection the veterinary schools. The good news is her problem does not seem related to her cancer which is great news!

[Remy’s Mom]

I just put out a new note on Angel and the pancreatitis. I’ve never dealt with it before and searching for suggestions and advice. Kind of an emotional wreck tonight I guess. ��

[Remy’s Mom]

Remy has had Cushings for almost 4 years. Pretty much same dose of Vetoryl, 10mg morning and 5 mg night. He developed diabetes almost 3 years ago and we have never been able to get it regulated. Lately he has developed tremors. Primary care says it’s common in old dogs which I understand. Could it be due to organ damage from the diabetes? Now I started wondering about his Cushings and if he could be moving to Addisons? Louisiana State University Small Animal now has an internist who is an endocrine specialist so I am going to get an appointment with her to see if she can figure this out. So far his primary care and internist have been unable to come up with a solution to the difficulties in regulating Remy’s glucose levels. The only consistent thing is his inconsistency.Any thoughts and suggestions would be much appreciated. Thanks so much,
Claire

[labblab]

Hello Remy’s Mom, and welcome back. I’m surely sorry Remy is having this problem with tremors, and I’ll come back tomorrow to write more. But in the meantime, I’ve added your new question to Remy’s original thread so that we can have the chance to refresh our memories regarding his overall history. So as I say, I’lll be back again later to add some more thoughts.

Until then, once again, welcome back.
Marianne

[Harley PoMMom]

Hi Claire,

Reading back on your posts I saw that Remy was taking 10 mg once a day, when was the 5 mg added in and why was his dose increased? Can you share his most recent monitoring ACTH stimulation test results? How is his appetite, and is he displaying any Cushing's symptoms? Sorry for all these questions but the more we know the better our advice can be...thanks!

Hugs, Lori

[Remy’s Mom]

I’ll have to check back further as to exactly when they added in the 5 mg. But it’s been well over a year. His last Cushings test was 4/23/23 at LSU. They use a different reference scale I think. He was 42.5 no l/L at 1 hr and 55.2nmol/L at 5 hrs. 40-140 is normal. Prior to that 5/27/22 pre 1.3 and post 1.9. His Cushings gets forgotten because of all his problems with diabetes. He eats because we feed him with a spoon. We’ve done that for over a year and a half because otherwise he just picks and grazes which doesn’t work with a diabetic dog. He never begs for food at all and if I weren’t hand feeding I don’t think he would eat much. We’ve kept his weight stable by doing the spoon feeding. He only drinks excessively when his glucose is high. Other than that he’s normal. His coat isn’t too bad for his age and living in a super hot climate. Not much undercoat but what he has grows very fast. No potbelly, panting or other Cushings symptoms. The tremors started back in the early summer and seem to be increasing in frequency. Due to his inactivity he does have some muscle wasting. We also learned his hip joints are extremely bad so no doubt his discomfort is one reason he is inactive. The diabetes has been a constant problem and we have not been able to regulate it. I think his doctors truly don’t know what to do with him. I started looking for things that might cause the tremor and saw Addisons so I wondered if maybe he’s on too much Vetoryl now. Of course there are many things that can cause tremor in old dogs including organ damage from diabetes. His most recent blood work was last week but they did not test Cushings. I think everyone is so wrapped up in the diabetes the Cushings goes by the wayside.

[Remy’s Mom]

Vetoryl increased from 10mg to 10mg am and 5 mg pm 1/4/21. Will try to find earlier records. He was having syncope events at that time which turned out to be hypertension. Cardiologist increased his amlodipine and also discovered small heart murmur of grade 1-2 which has been stable. Right after that in early February was when he was diagnosed with diabetes.

[labblab]

Thanks so much for this additional information. Given the fact that Remy’s cortisol level was at the low end of the desired therapeutic range back in April, I definitely encourage you to have it rechecked as soon as you can arrange it. Various problems could account for both tremors and a lack of appetite, but low cortisol is indeed one possible explanation that could cause even more serious problems if it continues.

I think it will be great if you can get an appointment with the new LSU endocrine specialist ASAP. I know how hard it can be to deal with both Cushing’s and diabetes at the same time. So the input of a specialist would be such a gift. Please do let us know how things develop, OK?

Marianne

[Remy’s Mom]

I thought I replied to this but can’t find it so I just wanted to thank you for your response and advice. I will definitely let you know what I find out. There are so many things that can cause tremor but I sure want to rule out low cortisol. Thanks again!
Claire

[Remy’s Mom]

Hello Marianne and everyone. We had a consultation Tuesday with the new endocrinologist at Louisiana State University regarding Remy’s tremors and poorly regulated diabetes. I asked about possible low cortisol causing tremor since Remy has been on Vetoryl for nearly four years. I received the ACTH test results today and his cortisol is indeed low. 25.1 baseline and 27.3 post therapy. This is substantially lower than his April test. So she recommends a two day holiday from the Vetoryl and then tre start at 5 mg morning and evening with a retest in two weeks. I will continue monitoring his tremors. His body score was 4 which is very good and she said he actually looks really good. I think they were all surprised that he’s had Cushings for nearly four years and is doing so well. She discussed switching him to Degludec after Christmas but I think now they will reevaluate after we get his cortisol levels figured out. She spent a lot of time with us Tuesday and we were very happy to have a good consultation. I think we were there four hours. I will keep you updated but I am hopeful that we can help our little guy feel better!! Best to everyone and as always, thank you so much for your advice!

[labblab]

I’m so glad you got to see the specialist, and thanks so much for this update! Overall, it sounds as though the results were reassuring, although you will definitely want to see a rebound in Remy’s cortisol level. For sure, I encourage you to follow through with the retest in two weeks in order to make sure he doesn’t need even a longer break from the medication before restarting at the lower dose.

I’ll keep my fingers crossed that indeed all goes well for you guys. And please let us know how his follow-up testing does turn out. Continued best wishes to you both!

Marianne

[Remy’s Mom]

A day and a half vacation from the Vetoryl doesn’t seem like much to me but that’s what the doctor ordered so we will resume this morning with a 5mg dose and again tonight. He did not seem to have tremors yesterday which was certainly encouraging. We have an appointment scheduled with the specialist on Dec.27 for a recheck and recheck ACTH so we’ll see how he is doing at that point. If, in the meantime the tremors seem to return even on the lower dose I will contact LSU and see about either cutting back again to only 5 mg per day or extending his ‘vacation’ from the drug.
Thank you SO very much for the advice!! Will keep you posted!!

[Squirt's Mom]

Oh I hope you are seeing improvement in our sweet boy! If not, I would stop the med and keep him off until I saw cush signs coming back and an ACTH proved the cortisol was indeed again high. Then I would want to start even lower...max of 5mg per DAY. If he needs the split dose then a compounded Trilostane would be the way to go. I am so glad you had a good visit with the specialist and left feeling good! It makes it all seem easier and better when we have a good vet by our side.

Hugs,
Leslie

[Remy’s Mom]

Thank you so much to everyone who has responded. I always value your opinions so much especially considering the first recommendation for trilostane nearly four years ago was 10 mg twice a day!! I suggested we start with 10 mg per day because of your suggestions. SO….Wednesday we went for the retest visit and Remy is still low cortisol. 28.5 pre and 33.2 post. They called Friday afternoon with test results so no trilostane last night and we will not give it until after another retest January 3rd. I did notice last night for the first time a return of the tremor for a brief time. Other than that I only see it when he is put up on the table for his evening meds and feeding. I suspect that is stress related. And I agree Leslie, 5 mg should be enough to start treatment with IF we can get back to a healthy level. His diabetes certainly complicates things but we have to get the cortisol levels straightened out first and then we can deal with the diabetes. I do with the Canine Diabetes Forum was still active because I could sure use advice there! If anyone wants to jump in on that issue I’m listening!! Remy never had too many symptoms of Cushings because we caught it very early. The last visit we saw a Resident and I don’t feel she was really ‘listening’ to me so much as the Endocrinologist. Believe me, I have learned how important it is to make sure they do listen. No one knows their dog better than their own family and sometimes the vets have tunnel vision. Anyway, that’s my update for now. I will be keeping a very close watch on Remy over the holiday weekend. HAPPY NEW YEAR to everyone and again thank you so very much for your support and advice!! Claire

[Squirt's Mom]

I am so glad the Trilo has been stopped. Now he has a chance to level out a bit and start over and hopefully with better results. It is difficult when diabetes is concurrent but it can be done. I admit....I am a colossal wuss when it comes to diabetes alone. Combined? someone would find me is a corner with my eyes rolled back and drool running down my chin! Those of you who handle this with such grace astound me. You have my utmost admiration.
Keep up the good work, Mom!
Hugs,
Leslie

[Remy’s Mom]

I am a ‘wuss’ too when it comes to diabetes. The possibility of Remy becoming hypoglycemic scares me to death especially since we have had little success in regulating him. That said, he has never been clinically hypoglycemic because we always catch it in time. I couldn’t do this without his Libre continuous glucose monitor. And I don’t go more than 10-15 minutes away from Remy just in case he starts to go too low. My phone will sound an alarm at 85 which gives me time to rush home. I also have a “FURBO” which is a wifi enabled gadget with camera and microphone so I can watch him. I can have it shoot little treats to him (I use a type that has some cane molasses in them) so I can start getting some glucose in him while I’m away from home. It’s restrictive for me staying close by but I wouldn’t have it any other way. We are coming up on 8 years with Remy in a couple of weeks and we love him dearly! I am hoping we can get his cortisol levels back into a safe range and then work on the diabetes again. Having you all to bounce things off helps me so much!!

Happy New Year to you all and thank you again!!
Claire

[Harley PoMMom]

Hi Claire!

My cat was just recently diagnosed with diabetes and has the Freestyle Libre, that sensor is really nice to have, although I did have one that stopped working after only a week, and that was a bit frightening. Fortunately, the pharmacy had one in stock and the vet got him in that day to put a new one in.

Wishing you and Remy best wishes!

[Remy’s Mom]

The Libres will conk out once in a while but the majority of ours (and this is three years worth!) have gone right to the last minute. We usually change it out within an hour or two that. And they are not always accurate either. But for an unregulated diabetic like Remy they have been a God send and made all the difference. I change his out myself. It’s not difficult to do and only takes a few minutes. I usually buy four at a time. I would suggest you always have at least one on hand!

Best to you and Kitty!!

[Remy’s Mom]

UPDATE REMY: Finally got the ACTH Stem tests back on Remy and his adrenal has recovered and he is back within normal range. (135 and 129) So they are recommending we resume trilostane this morning at 5mg once a day since that is the lowest available dose without compounding. We will recheck in a few weeks to see how he is responding. They also recommended changing his insulin but the past couple of days I’ve had some luck by giving his insulin around 300 even if it’s a little early. He always spikes after eating so my thinking is why must we let him get uncomfortably high just so he can eat and have his insulin at exactly 12 hours? Also, I don’t want to change too much at the same time. I would rather take steps as far as introducing different medications or treatments so we know exactly what is affecting. Anyone with experience with Diabetic pets or Cushings/Diabetic pets please reach out to me because I would sure love to pick your brains!! The K9 Diabetes forum doesn’t seem to be active anymore. Meanwhile, thank you all so much for your thoughts on Remy’s situation. You are wonderful and provide so much help and support!! I will continue to update as we see how he does on his new dose!!

[Harley PoMMom]

As you know I'm new to this diabetic thing myself, but the vet told me that the one important part is feeding my cat a low carb wet cat food, and I see for myself that this does play an important part in blood sugar numbers. I don't always inject at exactly 12 hours, usually within 1/2 hour of next scheduled shot, so for me and cat it's 6-6:30 am and 6-6:30 pm. He's usually high at the beginning and slowly declines around 2-3 hours after insulin shot.

[Remy’s Mom]

We try use a low carb wet dog food. He won’t eat the same thing ( for breakfast and dinner the same day) so Remy is very picky. We spoon feed him It’s a lengthy process sometimes but it works. He’s done when we finish the bowl. Otherwise he would graze or be inconsistent in his eating. I use the same brand and type food which we found agrees with him and to maintain consistency. Still, he’s all over the place with his glucose. We do 10 am and 10 pm since he’s a very late riser. He also has almost immediate post prandial spikes as soon as he starts eating so I’m experimenting with not letting him get up quite so high before giving the insulin. It’s definitely complicated and has pretty much taken over my life. If this doesn’t do the trick I’m game to try a new insulin but I’ll want to do it when I’m home all week so I won’t have to worry about any hypoglycemic episodes if I’m gone. Thank goodness for the continuous glucose monitor!!

[Harley PoMMom]

What type of insulin are you using? In the beginning we used Lantus but that seemed to drop him too low, so we've switched to Prozinc which is working better.

[Remy’s Mom]

For the most part Remy has been on Vetsulin. The problem is it takes too long to take effect and doesn’t last long enough. We tried PZI (prozinc) but didn’t have much luck with it either so went back to Vetsulin. They want me to try Degludec which I believe is similar to Lantas. My concern would be the risk of hypoglycemia. I don’t think we should make a change until Remy has been back on the trilostane for a bit to make sure he has adjusted, cortisol levels are normal etc. Then we can see about a change in insulin. Right now I am experimenting with giving him the Vetsulin a little earlier instead of adhering to a rigid every 12 hour schedule. If he’s within a couple of hours of that and his glucose is over 300 I will go ahead and feed him and give him his insulin. On average it takes 4 hours to kick in. When he eats his glucose spikes so maybe this will help his glucose from going to the moon.I figure it’s worth trying while he acclimates to his new dose of trilostane. I don’t like to change too many things at once in case he has some negative reaction.

[Remy’s Mom]

A little update on Remy. Had a snap cortisol a couple of weeks ago and he was at 2.6u (mid 70s on nmol scale) which isn’t bad but I do not want him to fall too low again. Since 5mg is the lowest dose of Vetoryl without compounding his primary care and I decided to try 5 mg trilostane every other day and see where we get. We will do an ACTH next week and get more precise results. (I had to switch from evening to morning dosing). Once we get this resolved I will work on the diabetes situation. K9 Diabetes forum no longer seems to be active. There are new approaches with hard to regulate diabetic dogs using a BBIT (basal / bollus insulin therapy)protocol but most veterinarians seem reluctant to try it even though it has been used in humans for many years due to the risk of hypoglycemia. As always any comments and suggestions are greatly appreciated!

[Squirt's Mom]

I can't help with the diabetes but I do have a concern with the resumption of treatment with a normal cortisol reading...and dosing schedule.

Vetoryl is used to lower cortisol when it is elevated. It is not used to maintain a normal reading after a dog has dropped too low. The protocol says to wait until the dog is showing strong signs again AND has an ACTH showing the cortisol is once again HIGH...not normal, and then restart at a lower dose than previous. So the risk of dropping too low again is higher by restarting with a normal cortisol reading. I am basing this on the 2.6u reading as 2.6ug/dl which isn't too low but you don't want it going lower, as you said.

Now, Vetoryl/Trilostane has a VERY short life in the body (2-12 hours) so dosing every other day 1) puts the dog on a sort of cortisol roller coaster which is not good for the adrenal glands, 2) offers little to no control of the cortisol, and 3) is a complete waste of your money. The beauty of compounding medicine is that you can get an exact dose. The liquid Trilostane is especially nice because often you can adjust the dose without having to buy a new prescription...simply increase or decrease as needed per the vet. FYI...Trilostane is compounded Vetoryl.

If the vet is running the ACTH vs the PVC test to monitor treatment then dosing at night won't work due to the strict testing schedule for the ACTH. The PVC had a bit more leeway.

Hope I haven't confused you more.
Leslie

[Remy’s Mom]

Hi Leslie, Thank you so much for your thoughts. We are taking Remy this afternoon to recheck his cortisol level. Internist had us switch him back to morning dosing (still every other day) to better faciliate an accurate test. Have not heard of liquid Trilostane so I assume this is compounded. I don’t know why the vets seems so adverse to compounding but they aren’t recommending it. (I have used compounded medications in the past successfully). I was told to resume Vetoryl at 5 mg once a day after he retested at 135/129.That was after a couple of weeks off trilostane. Primary care did a snap cortisol (not an ACTH Stim) and he was 2.6 and that was on trilostane once a day. I was concerned he was headed back to a too low situation and we talked about trying it every other day. Internist mentioned some dogs are very sensitive and only take it a couple of times a week. I see your point though that given the short life of 2-12 hours doing an every other day doesn’t really achieve stability. Remy never had much in the way of Cushings symptoms. They were very mild (like he stopped being such a picky eater and was showing more interest in food like a normal dog) a little panting at night time. No increased urination or water consumption. Hair coat a little thinner but he lives in a hot climate and thyroid is at the lower end of the scale. Still, he doesn’t have bare patches and most people would say he has a lovely coat. no pot belly. So maybe we should keep him off trilostane and retest say in a month or two depending upon symptoms?? My problem is cortisol affects his diabetes which is not controlled and I’m about to lose my mind with it. I guess we see what it is this time and I will discuss what you’ve told me and see where we’re at I’m also keeping in mind just the stress of going to the vet is going to bump up the cortisol. I don’t see why the liquid trilostane would be a problem if he needs it at all. Thanks so much for your suggestions and I will ask and see what he says. I really appreciate it!!

[Remy’s Mom]

Hi Leslie,
Got the report back on Remy’s last ACTH test. Baseline was 29.2 nmol/L and post 34.8 nmol/L so his cortisol is low again and obviously 5 mg. Trilostane every other day is too much for him. My opinion, he shouldn’t be on any trilostane until his cortisol is actually high. They put him back on trilostane at 135 and 129 which is still within normal range back in January. We have discontinued trilostane for the moment. If he shows symptoms or tests ‘high’ I am going to push for a compounded liquid Trilostane because as you said, it is much easier to adjust the dose. With a 5 mg capsule I can’t adjust it. Prior to the test we did switch him back to Vetoryl in the morning with breakfast to faciliate a more accurate test. For whatever reason his internists aren’t crazy about using compounded medications but I have done so for many years with other drugs and didn’t have a problem. So his Internist is trying to connect with the Endocrinologist to see what they come up with. Between this and the irregular glucose I may just lose my mind LOL!

[Squirt's Mom]

I agree with you 1000% - he should not be on treatment at this time. You are doing a great job with a difficult situation so keep up the good work!
Hugs,
Leslie

[Remy’s Mom]

Thank you Leslie. It’s been a very difficult week. Lots of ups and downs with Remy’s glucose. Had the Internist do an abdominal ultrasound Wednesday. Results weren’t too bad, some age related changes etc. Appears to be a polyp in the trigone area of the bladder but since I have had two dogs previously with bladder cancer we will do a BRAF test just to be on the safe side. Internist agreed that until Remy test high cortisol or shows symptoms we will not give trilostane. Ultrasound showed his adrenals appear perfectly normal, same size as they were in 2018. He said usually with Cushings there will be some enlargement or changes but Remy’s seem to be fine.So that’s good news….makes us wonder if he was misdiagnosed. He does have high platelets though so that may require some further investigation. Thank you so much for the advice and support! I aappreciate it so much!!

[Remy’s Mom]

Hi Leslie and all who are here…..OK I am in a real quandary with Remy. His private practice internist and primary care were pretty much against changing his insulin because they are totally unfamiliar with what the university endocrinologist was suggesting. It concerns me as well because IF we run into a problem (always at night, holiday, weekend it seems) who will be around to help us who is familiar with this product? He was going to get with the endocrinologist and discuss it. Well, after three weeks that doesn’t seem to have happened and Remy’s Vetsulin no longer seems to be working. The thing is though, he has also been off trilostane for three weeks now. So hopefully his cortisol levels have returned to normal or perhaps they are high and thus affecting his glucose and causing some resistance. I am so frustrated at lack of response by his doctors. Meanwhile Remy gets very uncomfortable and has up until all hours of the night and we are worn out and my brain is feeling very stupid at this point. I can’t say I am seeing any clinical signs of the Cushings yet. But we never did see many symptoms with him. The ultrasound last week showed his adrenal glands looked quite normal. Internist had said to wait a couple of months to retest (ACTH) but with the sudden insulin resistance I can’t just let that go on. I am going to pick up a new vial of insulin just in case there is something wrong with the present one. Any suggestions? I have tried to connect with someone from the K9Diabetes Forum but no luck getting on and no response from the Admin. Any suggestions as to dosing if his cortisol tests above normal? Obviously 5 mg. Every other day was too much. I know there are mixed opinions on compounded trilostane. Thanks so much for any advice!! Claire

[labblab]

Claire, I’m so sorry about all the stress that you and Remy are under. And I’m surely sorry about the difficulty you’re having over at K9D. I’d be happy to try to contact the site administrator, too, on your behalf. Are you already registered over there and just having trouble posting, or have you not been able to register yet? Just let me know if you’d like me to try and help with any of that.

Marianne

[Remy’s Mom]

Hi Marianne, Oh yes PLEASE I would love to have help getting on K9Diabetes. I was registered and used to post on there previously but it won’t accept my information. Not sure if it’s the user name or password. I asked for password reset but never received anything. I have checked junk mail/spam but nothing. When I try to register again it says my email is already in use. So I don’t know what it is but I haven’t had any luck and I am desperate for some help. I would so appreciate it if you know how to reach the site administrator! THANK YOU!!!

[labblab]

Claire, I’ll be glad to help. I’m a member over at K9D, myself, and just checked the membership list. I see there is a “Remy’sMom” listed over there, having joined 2-12-21, and last activity on 3-7-22. Does that sound like you? If so, I see that your username there is all run together, with no space between “Remy’s” and “Mom,” the way your username is here.

Also, a few years ago we experienced an oddity with our forum software that sometimes created log-in problems for members who used apostrophes in their usernames. We haven’t had any problems for a long time, and K9D is running on a more recent version of the software, anyway. But just for the sake of interest, here’s a link to a posting about the problem we were having here:

https://www.k9cushings.com/forum/showthread.php?9393-Choosing-Your-Username-and-Password

Anyway, let me know if you think I’ve identified you as the right user over there. And if you still can’t log in with “Remy’sMom” (no space), I’ll contact Natalie, the Admin over there. And we’ll go from there!

[Remy’s Mom]

YES!! That’s me and I did have the ‘apostrophe’ issue trying to get back on K9Cushings. I can’t be sure if it’s the apostrophe situation or if I have the wrong password but I never get a password reset via email either to try and change it just in case. I’ve been double checking ‘junk/spam’ just in case it winds up in there. Between Remy’s Cushings and diabetes I’m losing what little mind I have left! :). I would really appreciate it if you can let Natalie know! Thank you so very much!! We are suddenly having a problem with only minimal response to Remy’s insulin (Vetsulin) He has been totally off trilostane since February 17 so I’m wondering if his cortisol level has increased to the point where it is affecting his glucose and response to insulin.

[labblab]

I figured it had to be you:-). I’ll go ahead and send an email to Natalie asking her to contact you directly. I’ll also give her a link to your thread here so she catch up on Remy’s treatment journey. She’s a member here, too, so she’ll have access.

It sounds as though K9D has your correct email address on file, but if you want to send me a Private Message here just to confirm what it is, I can pass that on to Natalie so that she can contact you directly. Once you get settled back in on K9D, I’ll keep following you over there, too, so as to add any more Cushing’s thoughts that come to mind.

So let me know about confirming the email, and then I’ll contact Natalie.

[Remy’s Mom]

THANK so much!! I think you do have the correct email. I’ll try to PM just to confirm. Right now I am wondering if his cortisol level has gone back up and is affecting his glucose and insulin since the reduced response to Vetsulin seems to fit with taking him off Trilostane. Obviously I need help from both K9D and K9C !!!I really appreciate it!

[labblab]

Got your message and will now forward the info on. I’ll keep checking K9D, too, in the hope I’ll soon see your posts appearing there!

[Remy’s Mom]

Thank you so much! I really appreciate your help!!

[labblab]

OK, everybody, we’ve got Claire set back up over on K9D. So if anybody wants to monitor Remy’s journey over there, as well, here’s a link to the thread:

https://k9diabetes.com/forum/forum/diabetes-discussion-your-dog/5270-remy-newly-diagnosed-diabetes

And Claire, of course you’re always welcome to continue posting here, too ;-)))

[Remy’s Mom]

Thanks for all your help. Since Remy’s problems are both Cushings related and unregulated diabetes I need help from all fronts! This morning is the first time in a week he has down into a normal glue range. He ran above 400 from 5 PM yesterday to 5 AM this morning and suddenly went down. So at least we know he still responds to insulin. Tomorrow we will see the Internist and I think he should check Remy’s cortisol level to see if it’s gone back up above normal or not. He has been off the Vetoryl (trilostane) for about three weeks now. He seems to be very sensitive to it so IF it’s decided he needs to go back on and we know 5 mg is too much for him even every other day, what is the alternative? Mixed opinions on a compounded liquid from what I have read. As far as symptoms, Remy has never had much in the way of Cush symptoms. I’d be very happy for advice here!!

[labblab]

I really do endorse the idea of re-checking Remy’s cortisol. And if the decision is made to restart treatment, I really don’t see how you have a reasonable alternative other than shifting to a compounded product. In general, I personally endorse using brandname Vetoryl if that is “do-able” for the reason given in my quote below. I recently posted this on another member’s thread, so you may have seen it already. But I’ll go ahead and repeat it here.


…over our years here, I think there are few issues that have generated more discussion than the question of brandname meds vs. compounded alternatives. People have had, and probably continue to have, differing opinions. I’ve certainly come to appreciate the fact that compounded trilostane can be a positive game-changer for folks, either because their dogs need doses that aren’t available in brand form, or because the high cost of Vetoryl would make treatment a huge financial burden, or because their dogs simply won’t take pills in a conventional form. However, the downside is that compounded products are not inspected nor regulated in the same manner as FDA-approved pharmaceutical products, and as Marissa has pointed out above, some past studies have shown some dosage/efficacy irregularities in certain compounded trilostane products. So that remains somewhat of a worry to me. And for this reason, I think the reputation of any given compounder is especially important to investigate. On the thread below, we give people some tips in that regard:

https://www.k9cushings.com/forum/showthread.php?9066-Cost-Savings-for-Owners-of-Cushingoid-Dogs

If Remy’s cortisol is elevated again, then I think turning to compounding is your only viable option — especially as opposed to giving a higher dose on a less than daily basis. As Leslie has discussed earlier, you really want to keep cortisol levels continually as consistent as possible for all Cushpups. But for diabetic dogs, we’ve been told this is especially important. Even to the extent of preferably dosing diabetic dogs twice daily, when that is feasible. Given Remy’s apparent sensitivity to trilostane, once daily dosing probably remains the most likely option. So that would mean less than 5 mg. daily. And that means necessarily switching to a compound.

Even though a compounded liquid would be the easiest route to go, I’m personally not a big fan of trilostane in liquid form. My opinion is not based on any research or professional guidance. But again, over our years here, it just seems to me that we’ve seen more dogs experience unpredictable results on liquid compounds rather than solid compounds of trilostane. Solids do offer far less flexibility. But heck, in Remy’s case you could probably even get an initial batch of compounded pills or capsules in 1 mg. dosages. Presumably a compounder could make it that small. That way you’d have total control over dosage changes. So that’s likely the direction I’d try to go myself if Remy’s cortisol is up again. But again, other folks feel differently about liquids and that would also remain an option.

Definitely good luck tomorrow, and let us know what you find out as soon as you can.

[labblab]

And P.S., I went ahead and copied our conversation here into your K9D thread so folks over there will know where things stand with Remy’s Cushing’s.

[Remy’s Mom]

Thank you so much. The diabetes is a big problem for us especially for me as far as my stress levels (LOL) but despite all our efforts we have not been able to obtain and sustain regularity for him. We thought he was well regulated as far as the Cushings until Christmas when we learned he was now very low. The endocrinologist kind of raised her eyebrows at how long he has been on Vetoryl. We did have an ultrasound done a week ago and his adrenals appear normal and are the same size as six years ago. I might be wrong but I was under the impression that even with pituitary Cushings there would usually be some changes to the adrenals. I will let you know what we find out tomorrow!!

[labblab]

I sure do understand your stress! I’m a champion worrier, myself, and especially over health-related stuff related to furbabies. If *only* they could talk to us and tell us how they’re feeling!

And I really hope you’ll start getting some replies over on K9D. Both their traffic and our traffic has really slowed down these past couple of years as the Facebook groups have become more popular. But hopefully you’ll get some feedback over there soon.

[Remy’s Mom]

Internist sent out a cortisol test for Remy. Hopefully have the results back in a day or so. His glucose curve has been pretty good since we opened a new bottle of insulin. Interestingly his primary care called me today and when I mentioned it he said one of their vet techs had the same experience recently so it’s possible they had a shipment that got too warm during shipping. Meanwhile he is going to give me a Rx for a rapid acting insulin for those times when Remy is uncomfortably high.I should know more when the test results come back in. He did mention compounded trilostane and the controversy about the product. He has a vet friend who has a dog very sensitive to storyline and only gets it once a week which goes against conventional thinking. At this point we don’t even know if Remy will need it. Will keep you updated as I learn more. Thanks for all the encouragement and advice!

[Remy’s Mom]

Everything has changed this past week. We had Remy in for a baseline cortisol recheck and I also asked for an abdominal ultrasound. Got the results Thursday. Cortisol was 6.09 ug/L which would be 168 nmol/L. This was not an ACTH test just a baseline to see if he had recovered from low cortisol since he stopped Vetoryl February 17. Internist recommends we not treat until we see symptoms of Cushings. We know cortisol affects his diabetes and the past few days we had a nice curve going through Wednesday. Now he is trending back to the Vetsulin not lasting long enough.

The big change though is the ultrashowed Remy had transitional cell carcinoma (bladder cancer) so although at the present he is not showing symptoms we know the tumor produces inflammation and this adds yet another dimension to things. At the moment this is my biggest concern because we don’t know how long it has been there or how aggressive it is. I think it is fairly recent. So the question is whether or not to treat it and how treatment will affect all his other issues. I cannot believe Remy is the third dog I have had with TCC! We don’t smoke, don’t use chemicals to clean floors (I just steam them) don’t allow pesticides or herbicides in the ‘dog areas’ of the yard. He hardly goes out except to potty and right back in the house. We are dumbfounded as to how this can be. I don’t use pest control in the house at all which is very common here in south Louisiana. I put up with a few bugs rather than risk my pups. And yet here we are again. Bichons are one of the more susceptible breeds but still it was a shock to learn my fears were confirmed. More decisions to make. Unfortunately I don’t see much in the way of new treatments since my last TCC dog a couple of years ago. Given Remy’s stress levels even deciding where to go for treatment is a decision. I suspect his cortisol level is rising but since 5 mg every other day was too much my options are limited on the Vetoryl. As the cortisol level rises so does his glucose. I’m not sure there are answers anymore for us.

[labblab]

Oh my goodness. Claire, I'm so sorry to read this news. I agree, it's unbelievable that you would have three dogs diagnosed with this form of cancer. And yes, it certainly further complicates an already very complicated situation :-((((. From the standpoint of Remy's cortisol, it's good to know that his adrenal function doesn't appear to be oversuppressed. So that is worthwhile information from the baseline cortisol. However, even if nothing else was at play, I wouldn't feel comfortable starting back with the Vetoryl until a complete ACTH was performed. Random baseline cortisols can vary markedly throughout the day even in normal dogs depending upon stress level, etc. For dogs being treated with Vetoryl, we've been told a random baseline cortisol can reassure that cortisol isn't dropping too low, but otherwise shouldn't be used for dosing decisions. And now, with this new diagnosis in hand, restarting Vetoryl at any level would seemingly present a lot of question marks. For instance, it could be that the cancer itself is stressing Remy's adrenal system right now as opposed to Cushing's. And even though we know higher cortisol can also elevate the glucose readings, maybe a higher level of circulating hormone may have a beneficial anti-infammatory effect on the cancer? I have no idea about that part of things.

I guess (hope!) an oncologist might have better guidance about the path forward. I just hate it that you and your husband and Remy have this additional huge worry. Even if you don't decide to start back on the Vetoryl now or ever, please keep us updated, OK? I continue to send you all my healing wishes.

Marianne

[Remy’s Mom]

Thank you so much Marianne for the support. It definitely makes things more difficult. Now I don’t know if he’s fussy because he is becoming painful, high glucose, Cushings or ‘who knows’ at this point. His glucose was looking pretty good just a couple of days ago, now it’s running high again.Just to come up with an appropriate dose if we wanted to restart Vetoryl would be difficult because we know 5 mg every other day was way too much for him.And we can’t know how much the tumor is affecting things. When we did the baseline cortisol he seemed stable on the insulin and we didn’t know about the the TCC. Now everything changes. And I am torn between pursuing treatment because of his personality and how he is always so stressed with anything new. Being left for six hours of chemotherapy treatment would be very hard for him. First we have to see an oncologist and see what our options would be. Today he is already high glucose at 6 Pm. He was doing pretty well until the last couple of days. I can’t even seem to get one of his issues resolved. Monday I will see if we can get scheduled with an oncologist and go from there. I’ll keep you posted and thanks again!

[Squirt's Mom]

Oh Clair,

I was heart-broken to read about the TCC. :( And the third baby as well. Bless your heart. I've always said these babies know who will take the best care of them and that's why we end up with multiple dogs with the same issue. One of our members has her third cush pup. Doesn't make the diagnoses any better to swallow tho.

One thing I want to put out here for you to keep in mind. ANY illness, trauma, etc will cause the cortisol to rise naturally. That is the job of cortisol...to rise in the face of any stressor, external or internal, in order to help the body cope better. It is a fight or flight hormone. An elevation of cortisol with cancer is EXPECTED due to the nature of cancers. This does not need treatment...it is a natural process not a Cushing's disease process. So keep in mind that Vetoryl is probably the very last thing Remy needs right now. The cortisol is more than likely helping him at this point as Marianne suggested. Definitely worth discussing with his specialist but in your shoes, I would flat forget about Cushing's for now. BUT that does not mean you get to leave us....no no no. You and Remy are family, always, no matter what.

Hugs,
Leslie

[Remy’s Mom]

Thank you all for your support and advice. Last night was awful. NO response to his Vetsulin so he was miserable pacing, panting, thirsty. It was after 2 AM before I got him to sleep. I’m pretty sure his cortisol levels are up and trigging insulin resistance. If I don’t treat with Vetoryl how do I keep him from being hyperglycemic? It’s been a steady progression of worse and worse response to his insulin. We know 5 mg every other day was too much. The Internist has a veterinarian friend with a dog who is extremely sensitive to Vetoryl so he gives it to his dog twice a week and it works for them. I’m wondering about something similar for Remy. Like every 4 days maybe? Then we can retest and see what level he is maintaining. I have to get some action with the insulin though and get that glucose down. I’ve read some studies where increased glucose in the urine can predispose to bladder cancer. And maybe that’s why he has it. For the most part he doesn’t fit the typical TCC criteria. He’s not around pesticides or herbicides (in fact he hates it outside and hardly goes out). He’s not obese and he’s not a female. We don’t smoke and I don’t use chemicals on the floors, I just steam clean. He likes the cold marble floors. He’s not exposed to anything I can think of that I have any control over. But IF there is a tie to glucose in the urine and that diabetics are more prone to bladder cancer then that seems to fit. So what to do? We see his primary care vet this morning. Thoughts??

[labblab]

I’m so sorry things are going poorly again. But first off, if Remy were mine, I would not start back with the trilostane until you’ve had an ACTH that confirms abnormally elevated cortisol once again. There may be other causes for his lack of response to the insulin, and adding trilostane back into the mix if it’s not called for can just make things worse. If an ACTH is abnormally elevated once again, then I’d strongly advocate for a small compounded daily dose. As I’ve written above, I do understand why your vet prefers Vetoryl, as do I when it’s feasible. But giving Remy a dose of Vetoryl that’s too large on a spaced out basis does not seem like a workable solution to me. In essence, you’d be overdosing him part of the time and underdosing him most of the time. It seems to me that would only add to the rollercoaster effect. For a dog who doesn’t have diabetes, spacing out a larger dose over a few days may work OK, as is the case for your vet’s friend. But for a diabetic dog, I’d have to think that giving an appropriate daily dose, even if compounded, would be preferable in terms of maintaining glucose stability throughout a 24-hour time period.

But I’d think that step one would be to start with the ACTH. Once we have those results, the path forward may be clearer for us all.

[Remy’s Mom]

We have Remy scheduled for Monday for ACTH. We need to find out exactly where he is at and if it’s actually high and affecting his glucose. Right now he seems rather insulin resistant with little response to it. I am also going to have him run a CBC and chem panel and urinalysis so we can take the results with us to the vet school on April 1rst for Oncology consult. I was looking at Wedgewood Pharmacy’s website and apparently they have trilostane compounded from Vetoryl down to 1mg capsules. I think that would work for us if we need to put Remy back on. We know 5 mg every other day was too much.At 1 mg per day we would be at 30 mg per month instead of 75 at 5 mg every other day which was much too much. BUT we have to wait until we get test results back which I’m hoping will be by mid week. I have used Wedgewood many times in the past and been happy with them. I have no idea if his bladder tumor is contributing to any of the changes he is experiencing as far as his diabetes. He has so many issues it’s hard to know how far to push things. In the past we at least gave chemotherapy a try but given Remy’s extreme stress to change it might be too much for him. We can’t ignore how much affects stress affects health. We can give NSAIDs at home which may help keep the tumor from progressing for awhile. That’s a conversation for the Oncologists. His quality of life has to be paramount.

[labblab]

It sounds like a very reasonable plan to me, Claire. I know there are still a lot of question marks to figure out, but you’re taking things step-by-step, which is the best thing you can be doing for Remy. I’ll sure be hoping that you guys have a relatively calm weekend, and we’ll be waiting alongside you for those results.

[Remy’s Mom]

UPDATE: Finally got the test results back for cortisol. Click image for larger version

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Baseline 138 and post ACTH 178. He has been off Vetoryl since February 17th.
So he is not ‘high’. Yesterday we went up to 6 units Vetsulin morning and evening and he got down to 109 a little while ago so this dose seems to be working. First time he’s been below 190 in nearly 2 weeks. He seems to be feeling pretty good so I’m going to stick with this and see how it goes. I’m surprised 1/2 U made such a difference but since it seems to be working I’m not going to question why. I assume being off the Vetoryl has changed his insulin requirements. Bloodwork was OK as was urinalysis. No abnormal cells were seen in the urine sample but since we have a positive BRAF and the mass is visible on ultrasound we have to assume it is positive for transitional cell carcinoma. Our appointment with Oncology is Monday. For the moment I’m calm, Remy is happily sleeping away and we are thankful for the support and advice you have all provided!! I always welcome your invaluable input! Thanks to everyone and I will continue to update.

[labblab]

Claire, I’ve been anxiously watching for your update and I’m so relieved to read tonight’s summary! For folks who are more familiar with ACTH results reported in units of ug/dL, here’s the conversion:

Baseline cortisol: 5.0 ug/dL
Post-ACTH level: 6.4 ug/dL

So at least for the time being, it’ll sure make things a lot easier to not have to worry about restarting the Vetoryl. Whew!

And I’m so glad Remy’s glucose level is doing better, too. I know we’re still just taking things one day at a time. But thank goodness today sounds like it’s been a good one :-).

[Remy’s Mom]

It gets a little confusing because the vet school uses nmols and some of the vet’s offices use ug/dl. But for now his cortisol level is pretty good so we will not need to treat. I went ahead an upped the insulin half a unit and he has done very well today. It’s almost time for his dinner and evening dose of insulin and he’s at 289. It’s been a couple of weeks since he had such a good curve as today. We will just keep going day by day. The next trick will be his food because the brand he’s been eating for years now has discontinued all but I think, 3 flavors. We liked it because he could have different protein but the rest of it was pretty much the same. He’s so picky he liked the variety. Changing his diet could affect his glucose which will be another hurdle to cross. But for tonight I’m happy to know he is doing OK and it’s peaceful. Thank you so much for your support and encouragement!

[Harley PoMMom]

I know my cat's diabetes has been very challenging, I've reconciled if I can keep his BG under 230 I'm happy. I did have to up his carb amount to 15% because his BG was going too low and now he's in the target range 50% of the time, he's 14 years old and in great spirit so we're staying the course. It sure is a juggling act! Keep up the good work, you're doing a great job!!

[Remy’s Mom]

It is so difficult at times. But you’re doing everything right and the main thing is that your kitty feels good. The endocrinologist we see said not to get too hung up on numbers. Few or no clinical signs are good. We just learned the dog food we have been feeding is discontinuing all but three flavors which will be another hurdle to jump. We have had three good days now in a row so I’m happy. So many things to be aware of and they can’t tell us how they feel. Low glucose can be so scary! Kitty is lucky to have such a devoted Mom!

[Remy’s Mom]

I thought I had a reply ready to send but it disappeared. SO…..oncology visit went as expected. Did not see attending clinician, an intern doing internal med/oncology rotation saw us. Remy was anxiety ridden but cooperative. For now we will treat with Meloxicam and monitor blood work and the mass via ultrasound every two weeks. If we see progression of the cancer then we will have to make some decisions about further treatment. I see such interesting alternative treatments such as immunotherapy but they are not available here in the US or they require a sample of the tumor which is very risky for bladder cancer due to the danger of seeding. So between the diabetes, Cushings, and now bladder cancer I have my hands full. BUT Remy seems happy and his quality of life is good so that’s the main thing!!

[Harley PoMMom]

Claire,

You're doing such a wonderful job with Remy, he is a lucky boy to have you as his Mom!! Sending you both huge and loving hugs!!!

[Remy’s Mom]

Thank you so much for the encouragement.I look at it him and he’s such a happy boy and I don’t know how much to put him through. Most dogs adapt well to the chemotherapy protocol but Remy is such a strange little guy I just can’t see him being OK with it. I pretty much have to opt for something we can give orally at home. I think I could manage the Cushings and diabetes but bladder cancer is another story. I’ve been trying to avoid the ‘sad’ moments that can be overwhelming at times. He feels good as far as I can tell and he’s happy and given his age that’s something to be thankful for!

[Remy’s Mom]

REMY UPDATE. I had Remy in for lab work, urinalysis and an ultrasound to see how his bladder tumor looked. So far so good, it has not changed. His liver values were quite a bit higher on the Meloxicam. I had had the DVM do a baseline cortisol and it was 7.1 so a little higher but not bad. No symptoms of Cushings. I told the doctor about the very recent information reported from Purdue University that the BRAF mutation test has shown positive tests where the dog did NOT have cancer. So when he did the ultrasound he said it did seem rather smooth, perhaps more like a polyp. Only a biopsy would tell us for sure and we are very hesitant to put him thru that procedure. He’s too small for a cystoscopy. Needle tissue aspiration creates risk of seeding if it does turn out to be a malignant tumor. So, I am going to have the internist take a look next week and get his opinion. Then I think if he concurs we will stop the NSAIDs for a month and then recheck. As far as Vetoryl, I don’t see any need for it at this point so we will let that go for the moment. He’s still all over the place as far as his diabetes. He has been a bit more controlled since we started Meloxicam but of course that reduces inflammation and can affect glucose. I guess I would rather try to work around the glucose swings since thus far none have caused any harm but I don’t like the increase in his liver enzymes. He’s always had Increased liver enzymes so we do have to be careful. So many variables here to consider! At least for the moment his Cushings seem to be a non issue. (For today anyway!)

[labblab]

As always, thanks for updating us. I agree with all the decisions you’re making right now, and gosh, it would be great if that apparent growth turns out to be a benign polyp after all. I’ll sure be hoping for the best when you head in for the consult. And of course keep us posted!

[Remy’s Mom]

UPDATE on REMY Internist agreed with the plan to stop meloxicam for now since it seems to be affecting his liver enzymes. Also had lots of sludge in the gall bladder who we will do a course of ursodiol. It’s common in older dogs and Remy has had it before. As far as the bladder mass it appears stable for now. No one can say by its appearance if it’s malignant or not. And since the BRAF test is apparently not as reliable as once thought we just can’t be sure without a biopsy. For the moment we will give it another month and then recheck blood and urine and do another ultrasound. If we see a progression of disease then we decide what the lesser of the evils are as far as treatment. Probably go back to meloxicam. Seems like it’s a juggling act of side effects from most drugs. For now he is doing well except getting instability with his insulin/glucose again. As always, thanks so much for advice and support!!

[Squirt's Mom]

You're doing an amazing job staying on top of things for your sweet boy! Keep up the good work, Mom!

[Remy’s Mom]

Thanks to you and everyone for kind words of support. So far Remy seems to be doing OK. We will be doing recheck of blood work, urinalysis and ultrasound in the next couple of works. Hopefully everything will be fine. I’ll be on pins and needles until we find out if the bladder mass has changed or not. For now he is happy and seems his usual self so that’s all we can ask for!! Thanks so much for all your advice and support!!