Newbie - Sadie's Cushing's story

[Adv1213]

Hello,

I was so glad to see there is a forum out there for people dealing with Cushing's. I wanted to tell my story and see if anyone had any feedback or advice.

Sadie is a 10 year old female Cockapoo, a happy pup full of energy, here is our story so far...

5/2014 - After noticing blood in her urine, Sadie had surgery to remove bladder stones (Urinary Calculi). The surgery went well and she was prescribed a UD diet to prevent recurrence.

9/2014 - Noticed that Sadie was gaining weight, was starving and eating weird things (toilet paper, plants) and very thirsty. I called the vet and they said it was a side effect of the UD diet.

3/2015 - Sadie started having accidents in the house and would occasionally wake me up in the middle of the night to go outside, she was still starving and thirsty. Called the vet and they upped the portion of food. It also looked like she was gaining weight.

4/2015 - Sadie was having more accidents and neither of us were sleeping at night. I took her and her brother to the vet for a regular checkup and talked about her symptoms again. She had gained 7 pounds (22 lbs. at surgery in 2014 and 29.4 lbs.). Again he equated these things to the UD diet but said if she went off of it, she would get bladder stones again. At that point he recommended dentals for both of them and took the routine blood work in preparation. The next day he called and said her liver enzymes were high and that he suspected Cushings. I brought her in 2 days later for an ATCH stim test. The results - 22.x, which I was told was borderline, but due to her symptoms it was probably Cushings. They started her on Trilostane immediately, 60 mg daily, once per day.

5/2015 - After 1 month on Trilostane, we took her back in for an ATCH test and they said her levels were normal (I don't have the exact number, sorry). I asked why none of her symptoms had changed and I was told it takes time to kick in.

6/2015 - After 2 months on Trilostane, her symptoms really hadn't changed. I called the vet and they said I hadn't given it enough time yet.

7/2015 - After 3 months on Trilostane, still no change, I called the vet and asked to be recommended to a specialist. They didn't know of one but I found one on the internet, only about an hour away (in Akron Ohio).

7/14/2015 - First visit to Internal Medicine doctor. Physical examination of Sadie "Bright, alert, responsive, eyes and nose were clear, lymph nodes normal, heart and lungs normal. Abdomen is mildly distended but soft and non-painful. Moderate amounts of fat on her dorsum bilaterally". CBC - slightly high normal platelet count (512); decreased GGT (1) and BUN (6); elevated ALP (766), Cholesterol (356), Triglycerides (1081) and CI-ALP (630). They said that they received "mixed signals" from the tests that the previous vet did and it wasn't textbook. Recommendation: Switch from UD to WD diet immediately and come back tomorrow for Ultrasound and X-Rays.

7/15/2015 - Returned to specialist and had Ultrasound, Urinalysis and X-Rays:

X-Ray of the chest and abdomen - normal, with the exception of an enlarged liver which was expected.

Ultrasound:
- Also showed an enlarged liver
- Left adrenal gland slightly enlarged (1 mm bigger than normal)
- Right adrenal gland is extremely enlarged should be 7mm in length, it is 15-20mm in length (most likely a tumor)
*Typically 85% benign and 15% malignant
*Doesn't look malignant because it isn't invading surrounding areas
- This isn't a textbook case, there is a possibility that she has both pituitary and adrenal Cushings

Plan:
- Stop Trilostane immediately
- Switch food
- 2 weeks ACTH stimulation test
○ Results sent to University of Tennessee
○ Will take 10 days to come back
- Possibility she will be off meds for a month
- Start Milotane medication to shrink the adrenal mass

*If the medication doesn't work, can consider CT scan (requires anesthesia) and surgery to remove the gland.

That is the end of my story so far. Again any advice would be greatly appreciated. My Sadie is happy, energetic and enjoys life and I want to do everything possible to help her.

[Harley PoMMom]

Hi and welcome to you and Sadie!

Glad you found us and we will help in any way we can. This Cushing's sure can be a confusing and frustrating disease. Some of the challenging aspects in diagnosing Cushing's is that there isn't a test that can accurately identify it and any other underlying health issue can skew the test results for Cushing's, so unfortunately, it is often misdiagnosed.

I am assuming other non-adrenal diseases, such as diabetes and hypothyroidism, were ruled out? If you could get copies of those ACTH stimulation test results and post them here along with their timelines and the dose she was on at that time of the test that would be great. With Trilostane, it has to be given with food to be properly absorbed, also the timing of those ACTH stimulation tests, they need to be performed 4-6 hours after the Trilostane is given, were these protocols being followed? Was her Trilostane the brand-name Vetoryl or was it compounded?

So, none of her symptoms improved? :confused: Was/is she taking any herbs/supplements/medications?

Since Trilostane is known to enlarge the adrenal glands, when switching from Trilostane to Lysodren there has to be a washout period of least 30 days or when symptoms rebound and an ACTH stimulation test POST result is >9.0 ug.dl.

Sadie sure isn't a text book case, and hoping to bring you some comfort, she isn't the first one that we've seen here that didn't follow the rules. :);)

Hopefully once we all put our heads together we can figure out what is going on with dear Sadie, she sounds adorable! Remember that you are not alone on this journey we are here and are walking right beside you and your sweet girl.

Hugs, Lori

[Adv1213]

Thanks for the warm welcome!

I'm going to confirm that other non-adrenal diseases, such as diabetes and hypothyroidism, were ruled out when I go back for bloodwork on 7/31. I will also request copies of those ACTH stimulation test results and post them.

The Trilostane was always given with her breakfast and the one ACTH stimulation tests she had while on the meds was given 5 hours after the Trilostane was given. It was the brand-name Vetoryl, capsule.

None of her symptoms improved in any noticeable way, and she wasn't or isn't taking any other herbs/supplements/medications. The only thing that really seems to help her is a couple of long walks a day.

One of the things that is stumping the internal medicine doctor is when one adrenal gland has a tumor, the other is typically not enlarged.

Thank you for your offer to help and I will post more details in the next couple of weeks.

[Harley PoMMom]

One of the things that is stumping the internal medicine doctor is when one adrenal gland has a tumor, the other is typically not enlarged.


Trilostane is known to enlarge the adrenal glands, so it does not surprise me that her one adrenal gland is not atrophied. Here's a link to a study about this: http://www.ncbi.nlm.nih.gov/pubmed/14703251

Once we see those ACTH test results, hopefully we will be able to figure out what's going on. ;)

Hugs, Lori

[mimir]

The Univ. of Tenn could not confirm Cushings after two tests in two weeks. What they confirmed was atypical Cushings. Meaning she had Cushing's symptoms but her blood work was not confirming it.

She also was diagnosed with SARDS two springs ago. SARDS has the same symptoms as Cushings.

My point...you have to be an advocate for your dog. Keep pushing, asking questions etc. Go with your gut. You know your dog.

Keep in mind when you leave your vet's office your dog is forgotten and he/she is on to the next patient.

If I sound bitter...it's because I am. When dogs are older, some vets like mine do not want to treat them aggressively....they just want to make them comfortable. I tried my best to save my dog but I lost her five months ago...and I still have not stopped crying.

Good luck...
Mimi

[Adv1213]

I wanted to provide an update. A few days after switching Sadie's food from UD to WD and taking her off the Trilostane (which was 7/15) we started to see an improvement and she seemed to be getting better each day. I called the vet and she asked me to re-schedule her 7/31 appointment for the recheck and adrenal panel to 8/20 (which is over a month off the meds). She is still doing great, and almost back to her normal self. It may be too early to tell but I think the UD food was causing her symptoms and the Cushing's was misdiagnosed (and the Trilostane just made things worse). Will keep you posted.

[molly muffin]

That is entirely possible. Keep in mind everything effects everything else in the body, so if she was having a reaction to something in the UD food, then it is possible that it was causing symptoms because the liver and other organs where being effected.

Let us know how she is doing! Crossing fingers that she is going to be fine and no need to consider cushings any longer. That would be excellent news!

[Adv1213]

Just wanted to bring this story full circle. Sadie was tested again on 8/26, full blood work, urinalysis and ATCH stimulation.

Her liver enzymes are now normal and everything else is in the normal range - which means she does NOT have Cushings!

She is completely back to normal behavior wise.

I wanted to post this as I think some vets are too quick to jump the gun and mis-diagnose Cushings. I hope others learn from our story.

Thanks!

[molly muffin]

This is absolutely fabulous news!!!! We couldn't be happier for you and Sadie.

I agree, vets do jump the gun on cushings, which is why we always recommend that everything else be ruled out first. :)

Great post on Sadie.