Research 1st
Severe ME, POTS & MCAS.
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Hi. Please give your view on this complex finding I found regarding Cortisol levels.
Before I start I should remind you I have severe ME/POTS and can have a hypertensive crisis if stressed, in other words, I don't run a low BP, I can run very high BP. Thus low cortisol, has never been considered.
So I ran a 9am morning Cortisol (peak) test, multiple times (just to be sure so it's likely accurate)- non fasting:
Results were:
104 mmol or (3.76 ug/DL)
72 or (2.76 ug/DL)
101 or (3.66 ug/DL)
(Reference range is a minimum of 179 mmol or 6.48 ug/DL).
I told a GP, and they ran their own test in the doctors office. I said this wasn't a 'fair' test, as I have bad POTS and will either freak out or nearly freak out coming out the house, and anxiety will elevate the results. They said fair enough, just come for the blood draw. I did, with a paramedic.....
The result was 248 mmol (8.9 ug/DL) - Reference as before, minimum of 179 mmol or 6.48 ug/DL.
Ironically as that was 'low normal', when anxious, the doc ordered me a Glucagon Stim test, as they don't believe in POTS (my diagnosis using TILT!), but said pituitary conditions can cause you to be anxious, so the said that might be why I'm so 'adrenal' at the slightest hint of stress.
Naturally, I was in a bit of a state having severe ME/POTS and fasting for this test and coming to the clinic for the procedure, very worried what might happen. Anyway, the peak cortisol after Glucagon was 479 or 17.3 ug/DL. (Reference range is 550 minimum expected or 19.9 ug/DL).
Endo said don't worry about it, it's a bit low in terms of your 'brain' (rather than adrenal glands) response to stress (e.g. with an ACTH stim test), but as when you're nervous it's 'low normal', nothing to worry about and there's nothing wrong with your Pituitary Axis after all, and so you don't have a neurological problem, but 'Chronic Fatigue' (they don't believe in POTS or ME).
So now I'm stuck. What would you do? Is it normal to have significantly low cortisol when calm, and low normal when anxious? They say it is. I don't think it is. But what do you think? Have you found the same thing?
I explained to them POTS and Dysautonomia can make you incapable of reacting to stress normally and you can even pour out adrenaline (Hyper POTS), they said no. Catecholamines abnormal, or not interested, Naturally, they were normal.
Thanks for any ideas, input, or discussion. It's very frustrating.
Surely, the 3 low Cortisol results I had, over a period of weeks (calm and at home) mean something?
Before I start I should remind you I have severe ME/POTS and can have a hypertensive crisis if stressed, in other words, I don't run a low BP, I can run very high BP. Thus low cortisol, has never been considered.
So I ran a 9am morning Cortisol (peak) test, multiple times (just to be sure so it's likely accurate)- non fasting:
Results were:
104 mmol or (3.76 ug/DL)
72 or (2.76 ug/DL)
101 or (3.66 ug/DL)
(Reference range is a minimum of 179 mmol or 6.48 ug/DL).
I told a GP, and they ran their own test in the doctors office. I said this wasn't a 'fair' test, as I have bad POTS and will either freak out or nearly freak out coming out the house, and anxiety will elevate the results. They said fair enough, just come for the blood draw. I did, with a paramedic.....
The result was 248 mmol (8.9 ug/DL) - Reference as before, minimum of 179 mmol or 6.48 ug/DL.
Ironically as that was 'low normal', when anxious, the doc ordered me a Glucagon Stim test, as they don't believe in POTS (my diagnosis using TILT!), but said pituitary conditions can cause you to be anxious, so the said that might be why I'm so 'adrenal' at the slightest hint of stress.
Naturally, I was in a bit of a state having severe ME/POTS and fasting for this test and coming to the clinic for the procedure, very worried what might happen. Anyway, the peak cortisol after Glucagon was 479 or 17.3 ug/DL. (Reference range is 550 minimum expected or 19.9 ug/DL).
Endo said don't worry about it, it's a bit low in terms of your 'brain' (rather than adrenal glands) response to stress (e.g. with an ACTH stim test), but as when you're nervous it's 'low normal', nothing to worry about and there's nothing wrong with your Pituitary Axis after all, and so you don't have a neurological problem, but 'Chronic Fatigue' (they don't believe in POTS or ME).
So now I'm stuck. What would you do? Is it normal to have significantly low cortisol when calm, and low normal when anxious? They say it is. I don't think it is. But what do you think? Have you found the same thing?
I explained to them POTS and Dysautonomia can make you incapable of reacting to stress normally and you can even pour out adrenaline (Hyper POTS), they said no. Catecholamines abnormal, or not interested, Naturally, they were normal.
Thanks for any ideas, input, or discussion. It's very frustrating.
Surely, the 3 low Cortisol results I had, over a period of weeks (calm and at home) mean something?
