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View Full Version : Lacey-13 year old Bichon Frise diagnosed with Cushing's and currently on Vetoryl



Lil Lacey's Mom
06-08-2015, 01:09 AM
Hi Everyone,
I joined the forum but haven't posted until now. I am so thankful that there is a place like this to read other people's stories and get feedback from those who have been down this path. Until we suspected Lacey had Cushing's after searching for possible causes for her symptoms, I had never heard of Cushing's and many people I've tried to talk to about it are not familiar with this disease. I was hoping to get some advice or at least find out if other dogs experienced extreme lethargy and bloody diarrhea while taking Vetoryl.

My dog, Lacey, a nearly 14 year old Bichon Frise, was diagnosed with the pituitary form of Cushing's last August after a low dose dex test, although we suspected she had Cushing's for a long time prior as she displayed most of the symptoms- pot belly, ravenous appetite but not putting on weight, increased thirst, elevated liver enzymes, enlarged liver, increased panting, pacing, thinning coat and head pressing. Our vet also did an ultrasound to rule out the adrenal form of Cushing's. It took a long time to get an official diagnosis of Cushing's because she wouldn't test positive- her results were not considered high enough out of normal range.

Following the diagnosis, my vet (who is doing the best he can given his limited knowledge on Cushing's) suggested we try the lowest dose, 10 mg, of Vetoryl (trilostane) once per day in the morning. Her subsequent ACTH test suggested that her cortisol levels were almost unchanged even on the medication so we increased the dose to 20mg per day. We would occasionally give Lacey days off because she would experience side effects especially diarrhea and extreme lethargy. Those days off seemed to alleviate the symptoms but then too many days off in a row resulted in her Cushing's symptoms returning, mostly ravenous appetite (where she would bark and beg for food every hour or so all night long) and head pressing. Anyway the increased 20 mg dose with days off here and there seemed to work for a while and her test in November revealed that her cortisol levels were properly controlled. We maintained the dose but Lacey's lethargy got worse. She slept all day and after dinner. She was almost unresponsive so we told our vet and started giving her days off. That seemed to help for a little while but then Lacey started getting bloody diarrhea, a symptom I've never seen her have in her whole life. At first it was just a small amount but then she would have it multiple times/days in a row. We told our vet but he didn't suggest taking her off Vetoryl but rather told us to give Lacey medications including Diagel, Endosorb and metronidazole. It cleared it up for a while but once she went back on Vetoryl to curb her Cushing's symptoms, it returned again. During this time Lacey also took another ACTH test and the results indicated that her cortisol levels were very low. (Later found out from the endocrinologist that read Lacey's results that those levels can be fatal for some dogs and to only give Vetoryl as needed with days off because bloody diarrhea is very troublesome. And to discontinue use for a while should she have bloody diarrhea.) Our vet said no more 20mg doses, only 10 from now on but if Lacey is on even the 10 mg schedule for more than a few days in a row she gets very lethargic and has diarrhea, sometimes bloody. Today was the most recent time she had bloody diarrhea and she only had the 10mg dose 2 days in a row. She also had another ACTH test that we are waiting for results on.

My questions are: is anyone else having this problem with their dog? Is there something else we can talk to our vet about trying as a treatment? Our vet does the best he can but this is a rare thing for him to treat. It's frustrating because for a small amount of time, Lacey was doing well on Vetoryl - no head pressing, sleeping better, no ravenous appetite, even her fur started to become thicker and healthier looking. But now the bloody diarrhea and even lethargy worry me. I know based on research that Vetoryl is supposed to be easier on dogs than some of the other medications which is why I think my vet clings to it as treatment.

Thank you for reading this and for any help/advice you can provide. We want Lacey to have the best quality of life we can give her.

Harley PoMMom
06-08-2015, 03:44 AM
Hi and welcome to you and Lacey!

Love your avatar and she sure is a cutie pie!! So glad that you decided to start a thread for Lacey, you definitely have come to the right place for information regarding Cushing's, and we will help in any way we can.

Bloody diarrhea along with lethargy are worrisome and these symptoms can be attributed to her cortisol dropping too low. When the ACTH stimulation test showed that her cortisol dropped too much was she given a supplementary steroid such as predisone? Also she may not be producing enough aldosterone, which regulates the amount of sodium and potassium, and can be life threatening if not addressed. A chemistry blood panel can provide that answer, was one done? If aldosterone is unbalanced than supplemental mineralcorticoid is needed, Percorten is one medication that is used to stabilize the needed aldosterone.

It would help us if you would tell us more about Lacey's Cushing's journey? And here goes my questions :eek::D How much does she weigh? Could you get a copy of that low dose dex test and post those results? Also could you post the results of all her ACTH stimulation tests with their timelines and the dose she was on with each ACTH stim test? Were her ACTH stimulation test being performed 4-6 hours after her Vetroyl dose was given? Since Vetoryl is a fat-soluble drug it needs to be administered with food, has she been getting her Vetoryl with food?

Vetoryl is to be given everyday, and skipping doses is generally not a good option. Since Vetoryl leaves the dog's body in a time period of 12-18 hours skipping a day/s only sets up a roller-coaster of higher cortisol one day, lower cortisol the next.

This is especially troublesome in terms of trying to interpret the results of an ACTH stimulation test. If the test is performed on an "off" day, the results will be higher; if the test is done on a day with the med, the cortisol level might even be lower.

Dechra, the makers of Vetoryl, state in their product insert that when cortisol does drop too low and/or an imbalance of the electrolytes occurs the Vetoryl should be stopped and not resumed until clinical symptoms return and an ACTH stimulation test shows that sufficient cortisol is being produced. When both of these take place than the Vetoryl can be resumed but at a lower dose.

We have an abundant of information in our Resource forum, which does include articles written by some of the most renown veterinarians that specialize in endocrinology such as David Bruyette, Mark Peterson, and Edward Feldman. Here's a link to our Resource thread: Helpful Resources for Owners of Cushing's Dogs (http://www.k9cushings.com/forum/forumdisplay.php?f=10) Also I'm providing a link to Dechra's product insert: http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf

If you have any questions please do not hesitate to ask them.

Hugs, Lori

molly muffin
06-08-2015, 07:53 AM
Hi. I just want to welcome you to the forum also.

Lori is correct in what she has stated. If she was that low vetroyl should be discontinued till symptoms return. Electrolytes. Sodium and potassium need to be checked and is supplemental steroid should have been given for a set period them tapered off and her ACTH levels rechecked to see if the adrenal glands have recovered.


I have to head to work but wanted to make sure that you don't give vetroyl right now till all of these issues are checked out and confirmed that she is again producing enough cortisol.

Lil Lacey's Mom
06-09-2015, 12:22 AM
Hi and thank you so much for all of the helpful information and for liking my avatar- that picture is one of my faves of her. I will look into those articles as well to learn as much as I can to help Lacey.

Lacey hovers between 14 and 15 pounds (usually hovers in the 15 range).

My vet sends the ACTH stim test to a teaching hospital in our state (Michigan State) that specializes in internal medicine to initially interpret the results. My vet then receives the results and decides whether he agrees with them or not. I then receive the results over the phone so I usually only get basic information. Lacey's vet sometimes disagrees with the test interpretation from Michigan State. Lacey's vet thinks that even low normal results are fine whereas Michigan State thought that the results were too low. Has anyone else had this problem?

For Lacey's last test, I know for sure that she received a dose of Vetoryl 4-6 hours before the test. She always gets Vetoryl with food. We are waiting for her latest results from an ACTH stim test conducted yesterday, which usually takes about a week.

As for the test in March that revealed very low cortisol levels coupled with Lacey's lethargy and bloody diarrhea, our vet decided to do an electrolyte test to determine whether or not she may be venturing into Addison's Disease. Lacey's electrolytes were normal so vet ruled out Addison's.

Lacey's vet is very conservative when it comes to medications and steroids especially. Lacey has been suffering from an enlarged liver and elevated liver enzymes for at least the last 3 years. At times, her enzymes have spiked to over a thousand. Because of her liver issues, Lacey's vet wanted to wait and see if the symptoms stopped and Lacey improved without a steroid. His reasoning was that her symptoms were not severe enough at the time and the steroids could put too much stress on Lacey's liver.

Lastly, I will dig up Lacey's test results and post them ASAP. I may have to request some copies from my vet as I usually only receive oral results and then later get paper copies when I'm at their office and I remember to ask. Getting hard copies may take a few days but I will try to post as much as I can as quickly as possible. Thank you again and look forward to your replies :)

Lil Lacey's Mom
06-11-2015, 04:53 PM
I scanned in Lacey's tests but I don't have the permission/ability to upload them as an attachment. How can I post them?

labblab
06-11-2015, 05:22 PM
For site security protection, members do not have the ability to upload attachments other than photo images. So as one alternative, if you create a personal photo album, you can upload images of the tests to your album for the rest of us to view. However, the only results we really need to see are the ACTH numbers and any abnormally high or low results on blood or urine panels (along with the normal reference range). So if it's easier, you can just manually type that subset of numbers into the body of a reply posted here.

Marianne

molly muffin
06-11-2015, 09:48 PM
My molly has had high liver enzyme numbers for quite a few years too.

Not every time with the electrolytes be out of range, sometimes, they will be normal and we consider that to be a Addison crisis, where if they were to go lower they could in fact become Addison and they display the symptoms that are the path to Addisons.

In which case, the remedy is to always stop medication and wait till symptoms come back and the numbers of an ACTH show that there is a need for cushings treatment again. Sometimes steroids are given, it depends on how low she went and if she shows recovery on her own.

Michigan has a very good reputation.

Marianne is right, just type the test, the result and the range, like this as an example:
ALKP 950ug range 50 - 150ug

Along with the ACTH test, only high or low, anything within range we don't need to see to get a good idea of what is going on.

Lil Lacey's Mom
06-12-2015, 12:13 AM
Thank you for all the helpful information. I'm sorry to hear that Molly has high liver enzymes too.

Here is the the info from the tests I have:

Low dose dex test from 07/2014
cortisol baseline 226 nmol/L (high), range 15-110
cortisol low dose dex 4h 20 nmol/L
cortisol low dose dex 8h 62 nmol/L (high), range 0-30

ACTH test 08/2014
cortisol baseline 355 nmol/L (high) , range 15-110
cortisol 1 hr post ACTH 502 nmol/L, range 220-550

ACTH test 03/01/2015
cortisol baseline 37 nmol/L , range 15-110
cortisol 1 hour post ACTH 20 nmol/L (low), range 220-550

ACTH test 03/29/2015
cortisol baseline 36 nmol/L, range 15-110
cortisol 1hr post ACTH 41 nmol/L (low), range 220-550

I'm still waiting on the ACTH test results from Sunday, should get them by the weekend and I can post those results. I do not have the paper copies of her most recent blood work. I can check and see what blood work I do have and post that if it would be helpful.

I'm curious if either of you experienced Addison's crisis. Lacey has seemed off and somewhat sick and lethargic this week, has bloody stool again and vomited bile once this week. Lacey has similar problems every so often but once we discontinue Vetoryl for a while she seems to bounce back. I'm wondering if her symptoms this week are because her cortisol levels are still too low. Vet said to try her on an antibiotic for about a week and see if that clears up her bloody stool. Vet does not suspect Addison's (at least until her ACTH stim test comes in) because her electrolytes are normal. I hope to know more in a couple days.

Thank you for your feedback. Look forward to hearing from you soon :)

molly muffin
06-12-2015, 12:30 AM
The ranges that you are giving are for a dog not being treated. Once they start treatment the range is different.

This is from the manufacture:


Blood cortisol monitoring with an ACTH stimulation test

A positive response to therapy is regarded as an improvement in clinical signs and a post-ACTH serum cortisol concentration of between 1.45 µ/dL and 9.1 µ/dL (40-250 nmol/L). The ACTH stimulation test should be performed 4-6 hours after dosing with VETORYL Capsules. Standard advice is to take the initial blood sample at 4 hours post dosing. After the administration of VETORYL Capsules, cortisol remains most significantly suppressed for 2-8 hours. (Data on file.)

Treatment should be monitored with an ACTH stimulation test at 2 weeks, 4 weeks, and 12 weeks after starting therapy (or 10-14 days following any dose change), and thereafter every 3 months.

So you don't want a post under 40 and you want them to be anywhere up to 250nmol with symptoms controlled.

I haven't had mine go that low. The lowest we had was 110nmol post and I noticed some hind leg problems with her luxatting patella even that low, so don't think I want her to go on the lower end.

The idea is to be at a low enough dose to start with and build up if necessary, but gauge where they do best at within the recommended range. Each dog is their own little micro world internally so not ever dog will be the same, which is why you, who know her the best, will know where she feels best at and does well at.

Her bloody stool should clear up as her cortisol comes back up and she isn't having a GI reaction to being too low. 20 was WAY too low.

labblab
06-12-2015, 08:20 AM
Thanks so much for posting those test results. Like Sharlene, I am extremely worried that your vet has felt comfortable allowing Lacey's cortisol to drop so low and that be seems to believe that low cortisol is not an issue as long as the electrolytes are OK. The manufacturers of Vetoryl are careful to specifically note that either low cortisol or imbalanced electrolytes is a very serious condition that demands attention and a change in dosing. Holy Cow, if your vet is admittedly not very knowledgeable about Cushing's, why would he think he can interpret these tests differently than the experts at Michigan State? :o :eek:

For the benefit of the majority of our U.S. readers, here are Lacey's last two tests, converted into the units with which we are most familiar.

3/1

Pre: 1.3 ug/dl
Post: 0.7 ug/dl

3/29

Pre: 1.3 ug/dl
Post: 1.5 ug/dl

The 3/1 result is way, way too low. Dangerously too low. No wonder your poor little girl was having problems. The 3/29 result is at the very bottom of Dechra's safe/therapeutic range. If her result this time around is still this low or any lower, I would definitely interpret the bloody diarrhea, etc. as symptoms of an Addisonian dog whose cortisol has dropped too far. If so, the Vetoryl needs to be stopped and Lacey may need some supplemental prednisone, at least temporarily, to relieve the symptoms of overdosing. The medication should not be resumed until her cortisol has rebounded and when/if it is resumed, at a lower dose.

A lower dose will require a compounded version of trilostane since Dechra is currently marketing capsules no smaller than 10 mg. (we hear a 5 mg. capsule is in the offing but is not yet available for purchase). We can give you suggestions re: reputable compounding pharmacies. But for the moment, I am betting that Lacey needs a break from the Vetoryl altogether.

Marianne