× Cushing's Syndrome is a debilitating endocrine disorder characterized by excessive cortisol levels in the blood which may be the result of a tumor of the pituitary gland, adrenal glands or from tumors or cancer arising elsewhere in the body

Cushings Syndrome? 6 long years

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Replied by carolk on topic Cushings Syndrome? 6 long years

I am not a medical professional, but what I know about Cushing's is that most pituitary specialists believe it is the most complex to diagnose. You are not alone in your long struggle for a diagnosis. Many patients struggle for years, going from doctor to doctor before they finally receive a diagnosis. One patient I met was diagnosed after visiting her 17th doctor. It boggles the mind to hear of a patient celebrating that they have found a tumor/adenoma, but it's understandable when you take into account the long journey they went through. What I have learned is that most primary care physicians will probably never diagnose a Cushing's patient, and most endocrinologists treat the more common endocrine disorders like diabetes. Most Cushing's patients are not a textbook case. With the complexity of this disorder, it's so important that you find an endocrinologist that specializes in pituitary medicine for your diagnosis and treatment. The sooner you're diagnosed the better your chances of recovery are. PNA has a list of known pituitary specialist's on the website, but there aren't any listed for the United Kingdom. I would suggest that you contact The Pituitary Foundation at www.pituitary.org.uk who can assist you in finding a specialist in the UK. Another option is to join PNA's Facebook support group, "Pituitary Network Support Group" and ask for recommendations for endocrinologists that specialize in pituitary medicine in your area. It always helps to connect with people who have been on a journey similar to yours and can give you valuable insight and support. I know there are members from the UK in the group who would be happy to give you the names of their specialists. Also, learn as much as you can about this disorder, become an expert so you can ask informed questions and make informed decisions about your care. Hoping you get answers soon!
1 year 11 months ago #10813

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Cushings Syndrome? 6 long years was created by WreckingHotelRooms

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: (have graphs but size too big and links get marked as spam..)

DHEA (Low in the red): 
DHEA 0.46 (Reference 0.25-2.2 nmol/L). 
DHEA ratio: 0.06 (Reference 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.
  1. 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).
  2. 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.
1 year 11 months ago #10811

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