High Adrenaline and High Cortisol but can't get a diagnoses! 4 years - Stimulated
Posted , 3 users are following.
TLDR at the bottom. Thanks in advance.
28, Male, 182cm, 18 stone (was 12 previously), White, Duration 4 years/5,
Current medications; Xanax, Doxazosin, Escoltapram (Tried 30 + mediations listed below)
Smoke lightly, drink to crash this wired existence once a week.
Complaint: Stimulated beyond belief 24/7 until after many days no sleep and stimulation, I crash. Sweating, tremors, fatigue, weight gain, dilated pupils, adrenaline rushes, bladder shrinkage, depersonalization, anxiety, depression, etc.
The above makes sense, as my Cortisol and Adrenaline is high, but WHY? What is causing this, is there a condition that I fit into, I've spent 4 years, many thousands and free health care, everyone agrees it's extreme (been hospitalised etc) but no one on earth seems to know what it is.
I've had had EEG's, MRI's, CT's, Endo's, P Docs, Cardiologist, GP's.
Ruled out: Phaeochromocytoma, Cushing's, Thyroid Glands (CT + Bloods), Adrenaline (CT + Bloods), Bipolar, POTS (tilt test etc), Autoimmune disorders (Bloods etc). Amongst many other things.
Now, after 4 years what we know on paper is my adrenaline is high, "Plasma adrenaline – HIGH - rose to 568 above the normal range of 0-459 No nocturnal fall – On the 24-hr BP/HR autonomic profiles mean daytime BP was 133/92 and HR 88, without the expected nocturnal fall. Worse when standing, The BP was elevated at times when he was polysymptomatic, the highest being 162/101 when standing. No evidence of autonomic failure".
We also know that every time I do a urine test for Cortisol it is above the range slightly.
But we can't pin this to anything, for instance as well as being stimulated I am now allergic to pseudoephedrine and ADHD stimulants, which they tried amongst many other things to see how I'd react. One doctor said I seem "Angernegic" but couldn't label me with any condition, my own GP is now reading about Adrenaline Fatigue, as he said the other something like "I never believed it was a thing until I've spent 2 years on your case".
Waiting on Spit test this upcoming week for:
lgA
Coristol
DHEA
Medications tried:
No change:
Lithium (Highest dose), Melatonin, Depakote, Quetiapine (50 to 800mg,), Lamotrigine (couldn’t tolerate), Olanzapine 20mg, Buspirone /Promethazine/Buspirone/ Diphenhydramine (makes my heart jump) Mirtazapine, Zopliclones (15mg), Zoloft.
More Wired/Stimulated:
Elvanse, Backlofen, Phuesdephridrine (Sodafed), Guanfacine, Coffee, Clonidine,
Slightly helpful: Propranolol 80mg for shakes, Clonazepam
Sometimes lower stimulation for a few hours;
Xanax, Doxazosin
TLDR;
High Corisol and Adrenaline in urine and blood respectively, what could I have that isn't ruled out (Phaeochromocytoma, Cushing's, Thyroid Glands (CT + Bloods), Adrenaline (CT + Bloods), Bipolar, POTS (tilt test etc), Autoimmune disorders (Bloods etc).
Any ideas what it could be? I've been ruled out for most Adrenaline things..
0 likes, 15 replies
WHR
Posted
anyone?
Conns WHR
Edited
What are your U/E's doing? How does Sodium and Potassium shape up. Have you ruled out aldosterone issues?
Paul
WHR Conns
Posted
Hey Paul,
Lets see.
E/U's?
sodium i have somewhere as normal.
Potassium I don't believe has been checked.
Aldosterone - I worked with 1 Endo 4x and seen 3 others, I had a CT scan of my adrenal glands and test markers, would this rule that out?
Thanks for your input
Conns WHR
Edited
Normally a CT Scan (if you are lucky) might rule out a lump on the adrenal gland. Raised aldosterone is charactised by high sodium and low potassium. Not saying your cortisol issues are related, but at the same time, I haven't seen anything in your replies that suggest it has been ruled out. Endocrinologists' in the UK have issues diagnosing this adrenal problem of excess aldosterone.
WHR Conns
Posted
I've had a CT and MRI on adrenal glands with fluid (dye).
Aldosterone is one i have not heard mentioned to me.
I'll ask for a soudium and potassium test
Conns WHR
Posted
Just one caveat re- blood test for electrolytes; testing for potassium levels in the blood is not reliable. Still, worth pursuing as you still have found an answer to your adrenal issues.
barney34567 WHR
Posted
I see. One of my replies today asks about this scan. Good to see you've had it.
WHR Conns
Posted
Okay so aldosterone and electolytes? are my main tests? just it's all out of my pocket, as far as the NHS are conserned they are kinda done with me. My GP is good but not his area
barney34567 WHR
Posted
Did an endocrinologist or should I say a GOOD endocrinologist rule out Cushing's?
Or was it a GP who did?
WHR barney34567
Posted
Yeah I worked with 1 Endo 4x and seen 3 others, all have discharged me and do not believe it is coming from my Endo system, the one I seen 4 times said he had nothing left to test and that clear MRI and CT's of my brain show no pritary gland issues...
Atm, all we know is my Cortisol is high and Adrenaline, nothing else as mentioned..
Thanks for the reply
barney34567 WHR
Posted
Did you have your adrenal glands scanned for tumors?
barney34567
Posted
Assuming your reply is "yes" to my query on adrenal scans, the following may be of interest.
So the endocrinologist and everyone else dismisses Cushing’s Disease as the reason you have high cortisol.
This they concluded from looking at your pituitary gland and not finding a benign tumor there. Ok, good for the brain, but you're still sufferring. So they must keep looking.
I recall in my reading, before I had surgery on my pituitary, that there is a rare condition called Cushing’s Syndrome.
Cushing’s Syndrome (without evidence of Cushing’s Disease) can exhibit high cortisol levels that result from tumors in other parts of the body. There are a few causes, with one being “ectopic ACTH syndrome.” This means that the (hormone-releasing) tumor is growing and hiding in a place that it shouldn't be in, such as the lungs, but it could be anywhere.
If I were you I would consider:
a) A whole body PET/CT scan which should reveal where this tumor is hiding;
b) The midnight plasma cortisol and late-night salivary cortisol measurements (this test measures cortisol at night and if yours stays high, then there's a good chance you've got Cushing's Syndrome); and
c) The low-dose dexamethasone suppression test (LDDST). If after taking this med your cortisol is still stubbornly high, then you should be diagnosed as having Cushing's Syndrome.
Best wishes!
WHR barney34567
Posted
This is interesting! thank you so much, as I fall into Cushings so much but can't diagnose the thing!
I just ordered a cortisol spit test and DHEA which is taken throughout the day and night, is this option B?
barney34567 WHR
Posted
From memory I believe it is. Good luck!
WHR barney34567
Posted
thank you so much...