Cushings Syndrome?! Advice please
Posted , 4 users are following.
Cushing Syndrome?
Male, 28, 18 Stone, White, Cushings Syndrome (not disorder), 6+ years, conditions not related (or hard to tell), Anxiety, MMD, Depersonalization, oh and Urology issues. Drink once a week, smoke 10 a day, drugs - no. Medication daily, 80mg propranolol, 2mg Xanax.
I've spent 6+ years looking for why I am so ill and stimulated to the moon and finally got some factual information, it came mostly all within a month or two.
Tried 30+ medications to lower the Cortisol and Adrenaline, Anxiety, Depression (oh and Bipolar which I am 100% NOT, had to pay privately as the NHS were hell-bent I was), 10k later I seen the top people I could in London (flight away) for everything. Finally, one doctor thinks they found it.
Blood: Plasma adrenaline 568 above the normal range of 0-459.
Saliva: hhttps://imgur.com/a/2ypnz1H (two pictures scroll down)
DHEA (Low in the red): DHEA 0.46 (Reference 0.25-2.2 nmol/L). DHEA ratio: 0.06 (0.05-0.32)
IGA (High off the scale): IgA 340 (Reference 56-212)
Cortisol 5x over at points and always over (picture does it justice, wasn't even a extreme day for me).
Last week I failed C-Terminal Glucagon (CGLUC) - Scan 236ng/l (<210) “high”.
MRI x4 (2 Brain, 2 Body), CT x3 - All clear, hundreds of bloods and other tests.
HPA Dysfunction (symptom-based, diagnosed by two fields, psychiatry, and a top autonomic doctor who said Cushing's Syndrome). This might explain anxiety, depression, and depersonalization being labeled "treatment-resistant".
My symptoms match up, awake for days with Adrenaline even with large amounts of Xanax. Cortisol blockers make mine increase, stimulants are a no-no, pseudoephedrine will leave me shaking and stimulated beyond. I've gained 5 Stone!!! I have tremors, etc.
I've been told I have been ruled out of Cushings Disorder but appear to have the super rare syndrome. 20 in a million?
I'm wondering two things really.
CGLUC - I got the result this week, I've seen so many doctors lately and my GP doesn't know what it is or where it came from, is this a scan or blood? and do I need to go back to discuss them? (I did research this, it seems to be a benign tumor marker, have nothing to go on as it's just over the range. (This also came after I was told I might have Cushings Syndrome by St.Marys London, this seems to back that theory up).
Currently, St.Marys London (top hospital) is referring me to a specialized hospital department, Royal Free London (again top hospital). This time however I am being referred from the NHS, so this is gonna take time, I imagine a lot of time, NHS has been rough lately to put it lightly. Could I really have found it?! From my understanding, I just need an ACTH for the clean sweep?
Thanks for reading.
Ps, in my history there is a story version and symptoms before we finally got something on paper
1 like, 1 reply
irene64333 WHR
Edited
Hello. Cushing's is a hard thing to diagnose. try to find a very good endo which is challenging. Several tests must be done to confirm you have it. I had adrenal tumor. they were treating me with different high blood pressure meds none of them really worked. they were blaming my depression but it was Cushing's. but u have to realize that not everyone who gains weight and high bp and is depressed has Cushing's. please find a good endo who knows what to look for. good luck ❤