Autonomic Dysfunction Traced to Bilateral Adrenal Medullary Hyperplasia.

[Wayne]

I just ran across a remarkable article that I think would be of interest to most people with ME/CFS. In particular those who have symptoms of ANS dysfunction (I think that's just about all of us). In some ways, the account in the article reminded me of @jeff_w's experience, in that the young man realized that if he had any chance at recovery, he'd have to be incredibly proactive and creative in learning how to deal with a doubting medical establishment.

The gist of the story is that a young man of 21 developed a severe case of autonomic system dysfunction. He eventually traced it to a genetic disorder in which his dysfunctional adrenal glands were producing too much adrenaline. His determination to get well forced him to eventually invent a surgery to correct it, but which could only be done by a collaborative effort of somebody within the medical community.

The article is not a short one, but not a long one. If you have the energy to peruse it, I think it would definitely be a worthwhile read. -- I like stories like these! -- @Cort, you might find this interesting, as it might possibly fit in with some of your other well-researched findings. @Hip, I noticed the only search results on PR for "Medullary" were posts made by you.

This college dropout was bedridden for 11 years. Then he invented a surgery and cured himself
By Ryan Prior, CNN
Updated 11:40 AM ET, Sat July 27, 2019

 

[Sidny]

Interesting story but my first impression when reading about how his medullas were completely removed was that it wasn’t a procedure targeting the underlying mechanism of why his adrenals were hyperactive in the first place. (Although it’s amazing in its own right and the surgery helped improve his health)

It kinda of reminds me about stories you hear about people who get tonsils removed but it doesn’t completely improve their health (tonsils being the canaries in he coal mine)

Also based on the fact that he’s still on 9 medications a day and a critical part of his adrenals are gone, maybe he switched to the other end of the spectrum and his adrenals went hypoactive requiring supplementing with cortisol like Addison’s and some ME patients do.

I wonder if most ME patients have Hyper vs Hypo adrenal function? I feel like I have no adrenal response anymore

Altering cortisol and adrenaline output by reducing the size of the adrenals could be promising for those subsets of people who have hyperactive adrenals although I believe it’s still a downstream effect of some sort of immune related CNS issue. (So might not really be curative in that sense of the word but might improve symptoms)

 

[pattismith]

He eventually traced it to a genetic disorder in which his dysfunctional adrenal glands were producing too much cortisol.

Well, in fact his adrenals were not producing too much cortisol (cortisol is made by the adrenal cortex), they were producing too much adrenaline/noradrenaline (from the adrenal medulla).

It seems that adrenal hyperplasia can be cortical or medullar...or both

Some people here on PR could be concerned by this disease.(@Countrygirl , do you know if it was ruled out in your case?)

"Among the causes of hypertension adrenal medullary hyperplasia (AMH) and pheochromocytoma (tumor of the adrenal medulla) constitute only 0.1%–0.2% of cases.[1] Association of AMH as a precursor of pheochromocytoma is frequently described.[2] Since both the entities share identical clinical and biochemical findings, histopathology serves as the only way to distinguish between them."

Diagnosis is made from adrenaline/noradrenaline dosage in urine (during crisis)

Thank you for this interesting story @Wayne , I can't believe this young boy had to make his own diagnosis, I think about his poor mother who had to live with this disease without any help.

 

[Wayne]

his adrenals were not producing too much cortisol (cortisol is made by the adrenal cortex), they were producing too much adrenaline/noradrenaline (from the adrenal medulla).

Thanks @pattismith for that correction. I've had it in my mind that adrenaline and cortisol were somehow the same, and thinking the words were interchangable, inadvertently wrote cortisol instead of adrenaline. I went back and changed cortisol to adrenaline.

I did a quick google search, and came up with the following short article. Learn something new every day!

Adrenaline, Cortisol, Norepinephrine: The Three Major Stress Hormones, Explained

 

[Aerose91]

I've seen this story. Couldn't too much adrenaline output just be a regulatory effect of too little cortisol? Therefore the problem isn't dropping the adrenaline but rather leveling up the cortisol. The wired and tired thing