Holly diagnosed with Cushing's before Christmas

[Holly_Westie]

Hi I am new to this forum and it was recommended to me by a couple of people (and dogs) on twitter.

I have Westie sisters Holly & Willo who are 8 years old. Holly was diagnosed with Cushing's last December. We initially went to vet thinking she had anxiety issues as she started being destructive and also panting and restless at night. However discussing other symptoms (excess drinking, urinating accidents, pot belly, lethargy) he decided to do a urine test to rule out Cushings. As it didn't rule it out he then did ACTH test and that's when he diagnosed Cushings.

Holly was put on 60mg vetoryl and has been on that dose since mid December. She had a further ACTH after 2 wks on vetoryl then after a further 4 wks. At her last test the vet said her levels were slightly higher than they'd like but to continue on 60mg vetoryl and come back for another ACTH test in 3 months.

It's been 6 weeks since her last ACTH and I had to phone the vet at the weekend because her panting at night is really bad. Last Friday night she was panting for over 6hrs and was understandably in a state of panic. She was crashing into furniture she was so distressed. And I just felt so helpless. She is going in for another ACTH test on Thursday to check levels in case she needs vetoryl dose adjusted. Vet gave us Zylkene calming tablets to try and help her in short term. They are not brilliant and she still restless and panting at night.

Sorry for such a long post but I trying to paint best picture I can.

Not got exact data but off top of my head her ACTH post stimulation figures were:

First test before Cushings diagnosis: >1000nmol/L

Last test 6 wks ago: ~200nmol/L

Holly weighs approx 12kg

Hope these figures make sense. It's all new and a bit daunting to me.

Thanks for your help.

Helen

[goldengirl88]

Yikes!!!!!!
60 mg of Vetoryl seems like a heck of a high dose for a small Westie to me, does anyone else feel the same???

[Boriss McCall]

HI & Welcome!

Sorry things aren't going so well for you & Holly right now. I was thinking that 60mg was high dose as well. I am not sure how to translate the ACTH test numbers.
I know someone with more experience can read the numbers will be by shortly to welcome you & help figure things out.
Hang in there.. I hope things get easier for you & Holly.

Amy

[lulusmom]

Hi Helen and welcome to you and Holly

The concern I have is that while symptoms and a very high post acth stimulation result may be sufficient to say that there is definitely some hyperadrenal activity, no validation tests or differentiation tests were done to determine whether Holly has a pituitary adenoma or adrenal tumor. If Holly were in the minority of dogs having an adrenal tumor or even a more rare tumor called a pheochromocytoma, spikes in blood pressure are common which could cause the panting and disorientation you mention. If Holly were mine, I would want an abdominal ultrasound done to make that determination as soon as possible, as well as blood pressure check.

We have a member here, Kim, who is very familiar with pheochromocytoma and the high blood pressure and frantic behavior that comes with it. I know these blood pressure spikes can be intermittent but whether Kim noticed her Annie's episodes more often in the evening, I don't know but she can fill us in.

Does Holly bump into anything during the daytime? I ask because there is another condition called SARDS where a dog can lose their eyesight rapidly, in a matter of days which can cause profound confusion in the dog. A good number of these dogs will start showing signs of cushing's weeks or months prior to blindness and sometimes after. If you think Holly's vision is impaired at all, please have her eyes checked as soon as you can.

To help members understand the results of the acth stimulation tests before and after treatment, I have converted the reporting value from nmol to ug/dl, which is what most of us are used to seeing:

Diagnostic post acth stimulation results: >36.25 ug/dl
Treatment monitoring post acth stimulation test: 7.24 ug/dl

How long after starting treatment was the acth stim test dong? 60mg dose is on the hefty side but since the last stim test was six weeks ago and if Holly is not showing signs of low cortisol, such as vomiting, diarrhea, extreme lethargy and no appetite, I would not think she is being overdosed. However, Vetoryl (Trilostane) can also lower aldosterone which is why your vet should check electrolytes every time an acth stimulation test is done. Do you know if that was done six weeks ago?

I am so sorry that your concerns about Holly compelled you to reach out to others and I'm so very happy that you found us. Just know that we're extending our hands out to you and will do whatever we can to help you help your precious Holly. I'll be looking forward to your response to my questions and any other information you can provide. The more information you give us, the easier it will be for us to provide you with meaningful and appropriate feedback.

Glynda

[Harley PoMMom]

Hi Helen,

Welcome to you and your sweet girls, so sorry for the reasons that brought you here but so glad you found your way to us.

It would help us a great deal if you could get your hands on the copies of all tests that were done on Holly and post any abnormalities that are listed. We are especially interested in the results of all Cushing's tests, UC:CR and ACTH with their timelines...Thanks!

For Holly's weight of 12kg (26.4lbs) I, too, think that the 60mg starting dose is too high. I would of liked to see her started at 20mg or 30mg. We have seen time after time that when a dog is started at at higher dose that ill effects arise.

Although her post number from the ACTH stim test, which is 200nmoL/L (7.24 ug/dl), is a good result we have witnessed many dogs going too low while being on the same dose over a period of time, so please do watch for any signs of Holly's cortisol going too low. These signs are: lethargy, vomiting, diarrhea, or Holly just not acting like herself.

Has your vet given you Prednisone in case of an emergency? Does Holly have any other health issues? Is she taking any other herbs/supplements/medicines? Has she been checked for any thyroid issues or diabetes?

Please know we will help in any way we can so do not hesitate to ask any and all questions.

Love and hugs,
Lori

[Holly_Westie]

Wow such a lot to take in but thanks for the prompt replies.

Holly has never been tested to see what type of Cushings she has. The vet just implied that treatment would be the same regardless so there wasn't much point. I'm sure she was tested for diabetes but not thyroid problems. She has been given no other medication apart from Vetoryl except the calming tablets were given at weekend. I have read some Cushings dogs get Melatonin but that's not widely available in the UK so I've started given her warm goats milk before bedtime as milk naturally has Melatonin. My thought is it can't be bad even if it doesn't help. And she certainly loves it!

I will try to get the results of all her tests from the vet & will also ask about electrolyte testing as well. I will also ask re testing to see what type of Cushings she has.

Hope I've not missed anything out.

Thanks again for your help.

Helen x

[Concernedmom]

Hi Helen
I don't want to scare you but I was reading your story and just wanted to say please keep in mind that our pets can have allergic reactions attributed to Trilostane besides the normal lethargy, vomiting, etc. and it can happen any time during treatment. It might not be common i don't know but it happened to my pet. No one knows them better than you and when somethings off it's off. We can't forget these are drugs afterall. It took 6 weeks before my dog showed a reaction to it. Something else to think about while you're pondering the rest. Just what you needed right now? Sorry!
I hope holly gets well and good luck to you

[frijole]

Hello and welcome from me as well. Glynda mentioned earlier that the blood pressure spikes could be from a pheochromocytoma tumor. (a form of adrenal tumor) My Annie had one and they are terrifying to watch when they breath so fast you can't emulate it - The answer is YES without a doubt it happened at night which I always found strange.

As she suggested - I would have an ultrasound done of the abdomen using high resolution machine. You might have to go to a specialist for this but it is worth it. I had to do it twice and the 2nd time is when we finally figured it out.

My girl was misdiagnosed as having cushings - she had 5 acth tests and 2 LDDS tests and they all indicated cushings when in reality she had a non-cushings adrenal tumor that is very rare.

Sending best wishes to you and Holly, Kim

[milosmom]

just another worrywart dropping by to say hi and also to welcome you and your babies.it is a rough road to travel with this cushings,but know that you have found the perfect forum for information,support and lots of input.there will be many following your story.staying tuned..patty(milo)meka xoxox

[Holly_Westie]

Thanks for all the replies.

I had a look at the Vetoryl box and it said starting dose should be 6mg/kg so vet has started Holly off on recommended dose.

I have read all your points and suggestions so gonna write a list of questions to ask the vet tomorrow.

We didn't have a great night last night either so hopefully we'll get to the bottom of this soon. 3 hours broken sleep a night is not doing any of us any good.

Helen x

[Trish]

Hi Helen

Glad you are armed with questions for tomorrow, the people here really are the best on the net, they should get some award or something :D:D Wishing you all the best for your vet visit. Hoping you all get some sleep, it really does adle the brain when you don't get enough so feel for you there.

Hugs for the girls
Trish xxxxxxxxxxxxxxxxxxxxxxx

[goldengirl88]

Helen:
In your first post you said Holly was getting 60mg, your last post said 6mg is this right or a typo? My dog weighs more than Holly and the max for her weight using the Vetoryl standard was 30mg. I am confused on the dosing with Holly, could you clarify please? Thank you and God Bless you and Holly.

[labblab]

I'm thinking I may be able to shed some light on the dosing confusion. Even though 60 mg. does sound like a high initial dose to many of us, it is true that 60 mg. is in fact the recommended dose for a dog of Holly's weight (12 kg. or 26 1/2 pounds) per Dechra's published dosing chart that was compiled and printed at the time that Vetoryl was first approved for sale. Printed recommendations that accompany the chart list a broader initial dosing range of 1-3 mg. per pound (2.2 - 6.7 mg. per kg.) based on the results of the first clinical trials involving the drug. However, in recent years, additional research and clinical experience have accumulated. As a result, verbal recommendations coming from Dechra as well as written recommendations coming from many specialists advise starting dogs off at lower doses than at the time the chart was published. The most recent recommendation of which I am aware coming from Dechra is to start off at the LOWEST end of that published range: using a formula of 1 mg. per pound (or 2.2 mg. per kg.) to calculate a starting dose. It is very frustrating to us that the published dosing table differs from current recommendations. But there you have it.

Regardless of all that, the truth is that the inital dosing recommendation is exactly that -- just a general starting point based on a dog's weight. Every dog metabolizes the drug differently, and so the dose that one dog needs may end up differing significantly from the dose needed by another dog of the very same weight. The proof of the pudding are the monitoring ACTH results and observed symptom resolution. So even though Holly's starting dose was higher than the formula with which we've now grown familiar, her monitoring ACTH results thus far have been fine. So assuming Holly does in fact have Cushing's, you would not want to go backwards now and lower the dose unless there was reason to believe that she was unwell, or unless future monitoring ACTH tests show that her cortisol level has dropped significantly lower.

By the way, here's a link to the U.S. Product Insert for Vetoryl which does indeed list 60 mg. as the starting dose for a dog of Holly's weight (even though the written paragraph cites that broader dosing range of which I spoke earlier):

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


Marianne

[NoonelovesmelikeNorman]

Hello Helen!...Norman (cushings), Millie (yorkie-pooh) and I would like to welcome you and Holly to the group as well. Excellent resource and supportive group to help you through the cushing journey.

Love and Blessings,

Sharon

[molly muffin]

Welcome Helen and Holly. what a cutie. :)
I'd second needing to find out which type she might have, pituitary or adrenal tumor.
Thyroid check (look and see if there is an T4 listing on lab work) How are the kidneys doing? Just making sure of no protein in there.
So far the results post are good for her, but something is off and my first thought is maybe BP. Definitely want to have that checked regularly.
I think that is enough to over whelm you with on a first day.

hugs,
Sharlene and Molly Muffin

[goldengirl88]

Helen:
I did not realize Holly weighed 26 lbs. I have never seen a Westie that big. I will let the others help with the dosing advise as I am newer. I just know that everyone I have talked to about this disease always says err on the side of caution. My Tipper is on 30mg. but started out on 10. Good luck to you and Holly I am glad to hear she is doing well, as that is what we all strive for. God Bless you and Holly.

[Holly_Westie]

Thanks to everyone for your lovely welcomes to this forum.

Holly went to vets on Thursday and vet very pleased with her progress on 60mg Vetoryl. Her levels are now 206nmol/L. They were 240nmol/L on her previous ACTH test 6 wks ago so they are going in right direction. Ideally vet would like between 50 & 200 so we are nearly there.

Got the impression vet is however reluctant to test what type of Cushing's Holly has and I feel a bit scared to challenge her as she's the professional not me. She is treating Holly's panting at the moment as anxiety so we have more Zylkene calming meds & I have bought an Adaptil collar for Holly to wear all the time. I have asked vet for her test results so they gonna send them out.

And yes at 26lb Holly is a bigger than average Westie. The vet has never had an issue with her being overweight. She and her sister Willo are longer & taller than virtually all other Westies we've met but their mum Lucy was also bigger than the average Westie. They certainly are not handbag dogs that's for sure ;-).

Will hopefully be able to post full test results soon.

Helen x

[scottieraica]

Hi... my scottie was Diagnosed with Atypical Cushing last month after 8 months of tests. She weighs 11.6kg and started with a safety dose of 23mg. I guess 60mg is too much!



Yikes!!!!!!
60 mg of Vetoryl seems like a heck of a high dose for a small Westie to me, does anyone else feel the same???

[scottieraica]

Hi Hellen
How's Holly?
Has the vet changed the dose?
Looking forward to hear from you!

Warm regards!
Vivi & Raica X

[goldengirl88]

Helen;
Hope Holly is doing well, and wondering if you had any further testing done on her? God Bless you both.
Patti