Atypical Cushings - Please Help!!!!! Nothing is working!

[joy and bella]

Hi all! I am desperate for help and guidance! My Bella was diagnosed with atypical cushings in August of 2018. She had all the symptoms- excessive thirst, excessive eating, hair loss, excessive urination, pot belly, anxiety. She was tested and treated for a million things. Not normal Cushings. No liver disease (although her liver is huge). Maybe her thyroid. Her tryglicerides off the chart. Gallbladder issues. pancreas issues. The list goes on and I have treated her every step of the way because to be blunt there is not much I love in this world like her! She had a seizure over a year ago and after that I had to get to the real bottom of it. Most thought I was crazy to test her in Tennessee but I knew things were not right and after what seemed like forever of trying a million things I finally insisted on the test. Thank God I did. She tested positive for Atypical Cushings. Since then we treat her with:
1. Clopidogrel 1/8 of 75mg a day (since the seizure she’s been on this - MRI done no pituitary tumor to be found)
2. Omega 3 ultra concentrated chews
3. 3 mg of melatonin twice a day so 6mg total per day
4. Flaxseed lignans- 115 mg flaxseed hulls and 17.5mg SDG Lignans a day
5. Thyroxine 1/4 of .1 mg - was doing once a day started about a week ago twice a day
6. Fortiflora probiotic - 1 package a day
7. Ursodial 1/4 of 250mg once a day
8. Trazodone 50mg 1/4 twice daily- just started 2 weeks ago

I plan to get another ultrasound to see if the adrenal tumor is large enough to be seen. But really I need advice and if you all know of a specialist to go to. I live in South Florida but will go anywhere to help her. She is up all night now crying. Sleeps all day of course. It’s heartbreaking and it seems nothing I’m doing is working. Please any guidance is appreciated!

Thanks!

Joy

[Lovetodream88]

Hopefully our moderator who had a dog with Cushings will respond. My older girl has regular Cushings and Atypical Cushings. I give the melatonin and the lignans for it and she has done well. Cushings can also be from damage done by steroids. Even if you find the tumor it’s not likely it can be removed so finding it doesn’t do you any good. If she is still having issues you might want to look into an internist.

[ladyjane]

You can find an internal med specialist at: www.acvim.org

Such a frustrating thing....I have a friend who is going through something similar with her yorkie. I will alert her to this thread.

Where are you in South Florida? I can ask around about an IMED specialist.....

[Lolasmom1211]

Ugh, I know exactly what you're going through! My little guy has been diagnosed with Atypical Cushings, PLN, IBD, chronic pancreatitis & dermatitis! He is on melatonin, lignans, tylan, pepcid, and enalapril. He will go through "spells" where he wakes at night for 2-3 hours and is very restless and cries. I've found that if I put a fan directly on him and put him on a cooling pad (Arf brand) that seems to help a bit. I also have to rub his belly until he calms down. We have been hesitant to put him on the Cushing's meds because he does not have excessive thirst or frequent urination as of yet, and we'd like to save those in case his symptoms worsen. I do keep his cooling pad in the refrigerator during the day so if he needs it at night it will be extra cold when I take it out. My internist said to give him some anti-gas meds, like mylicon drops, which we do nightly in case it's his belly that's bothering him.

It's a terrible, helpless feeling when you can do nothing to help them. I hate when this happens - good thing is, it will happen for 4-5 nights and then he'll go another 4-5 nights where he'll sleep better.

I wish I had a magic solution for the cure, but I, like you, keep trying everything I read about to figure all of this out. Please post if you find anything else that helps. I'm always looking! Good luck...

[aweitzm1]

My Thumper also has Cushing's it took quite a while to get the proper diagnosis. We did so many tests until it finally came back positive.

He is on Veteroyl and Enaparil. Unfortunately it looks like his number (can't remember which one at the moment) increased so he needs to be retested in August and if it increases again the dosage needs to be increased. I understand the frustration when nothing works. You are in my thoughts.

I never heard of using melatonin is that for the Cushing's or something else?

[Lolasmom1211]

It is used for "Atypical Cushings". With Atypical Cushings, the cortisol levels are not increased, so the protocol is melatonin & lignans, I believe.

[Lovetodream88]

Originally Posted by aweitzm1

My Thumper also has Cushing's it took quite a while to get the proper diagnosis. We did so many tests until it finally came back positive.

He is on Veteroyl and Enaparil. Unfortunately it looks like his number (can't remember which one at the moment) increased so he needs to be retested in August and if it increases again the dosage needs to be increased. I understand the frustration when nothing works. You are in my thoughts.

I never heard of using melatonin is that for the Cushing's or something else?

It is for the sex hormone produced by Atypical cushings. Callie has both and I have chosen not to put her on Cushing medicine and try the natural route of Melatonin and Lignans.

[aweitzm1]

Originally Posted by Lovetodream88

It is for the sex hormone produced by Atypical cushings. Callie has both and I have chosen not to put her on Cushing medicine and try the natural route of Melatonin and Lignans.

Thanks for the info. I believe Thumper's condition is typical and that is why he is on the veteroyl but I might mention it to the vet at his next visit and see what he says. I really do not want to increase his medicine if I can help it.

[ladyjane]

i believe Melatonin is also used for Cushings. It is great for hair loss.