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Could Dysautonomia/POTS/ in ME falsely 'elevate' LOW Cortisol?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Research 1st, Jun 11, 2015.

  1. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    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?
  2. JamBob

    JamBob Senior Member

    I'd ask for a second opinion. Do you know if the endo you saw was a pituitary specialist? A lot of them only know about diabetes.

    Also are you male/female and if female are you or have you recently taken contraceptive pills as this can affect cortisol readings.
    Last edited: Jun 12, 2015
  3. Crux

    Crux Senior Member

    It seems possible that in POTS, adrenaline could rise, then in turn cortisol would rise to modulate it.

    I've been having a recurrence of OI, and believe it could be due to a choline deficiency, which would result in an acetylcholine deficit.
  4. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Thank you both for taking the time to consider my complex question and for replying with your thoughts. It is most appreciated, and your input is more knowledgeable that the doctor I have seen. Consider you aren't doctor's that's rather impressive you have learnt so much. This forum, as you can tell, has so many knowledge patients, it's incredible. Maybe if there is some treatments, some of us can be doctors and scientists. :)

    JamBob: they aren't a pituitary specialist so I will take that on board, and I have melasma (darker pigmentation mark on face caused by high estrogen - not taking the pill), so unexplained high estrogen, or last time I checked, high saliva estrogen and normal blood. I can't figure that out.

    Crux: The choline deficiency idea is interesting, thanks for the link, as I was exposed to high level pesticides (has lots of blood tests) as a teenager, before, I then developed POTS. Maybe the two are linked.

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