Not Addisons, so now what?

Following 6 weeks of very low BP, daily fainting, couldn't drive, hair falling out, depression, lost a stone and a half, couldn't eat, vomiting etc I finally got to an endocrine clinic on 31st March, where I passed out - I was given a short synacthen test immediately and told to take Hydrocortisone 3 times a day. The consultant was sure I had Addison's (as was my GP). I got the MED bracelet, told work (I have been off unable to work for 6 weeks) and put everything in place to make sure I knew how to manage the illness. However I have been told today that the synacthen test 'made my adrenals behave wonderfully' (whatever that means) and that I do not have Addison's. Cortisol was 147, then (on the 31st March) 111 and on a downward spiral. When I asked the endocrine Dr what my low cortisol could be attributed to she told me 'some people just have low cortisol'. I am SO frustrated. Make no mistake, 4 weeks ago I was suicidally fatigued, exhausted, dead on my feet, and the Hydrocortisone has changed my life (the endocrine again: 'yes well we would all feel a little better from taking a bit of cortisone dear').

Now what? The thought of not having the one thing that has made me feel better, taken away, is making me panic - i am even on a phased return to work next week.I am also hypothyroid, anaemic, gluten intolerant and have adenomyosis in my bowel (to add to the fun). What now? I feel like an idiot. I was ill and thought I was going mad, was told I was, in fact, very ill, now I find out I am 'not' ill. I have been told to keep taking the Hydrocortisone until next Fridays appt at the endocrine clinic...

Advice? What is going on? What should I be asking? I cannot bear the thought of returning to the horrible state I was in :(

6 Replies

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  • Cortisol was 147, then (on the 31st March) 111 and on a downward spiral. When I asked the endocrine Dr what my low cortisol could be attributed to she told me 'some people just have low cortisol'.

    Yes, people with Addison's Disease have low cortisol.

    Take a look at this link : imperialendo.co.uk/Bible201...

    The short synacthen test is discussed on page 68 - 70.

    Your cortisol looks terribly low. I think you need an urgent second opinion - the doctor you've seen is a dangerous idiot.

  • I think you need to get the full results of the test you've had done.

    As I understand it, people start with a certain amount of cortisol. They are then tested by injecting them with something that should raise cortisol dramatically. If the person has Addison's Disease then their cortisol will not rise much or at all.

    Some people can be like you, and have very low cortisol that then goes up a lot. But the injection is a totally artificial way of raising cortisol that might NEVER happen in real life. So just because your adrenals are capable of producing more cortisol doesn't mean that they ever will under normal circumstances.

    It is the increase in cortisol after that injection that doctors pay attention to, not the levels beforehand.

  • There is antibody test that tells if it's autoimmune disease destroying adrenal glands. Ultrasound would show if the adrenal glands look ok as there might be scar tissue or athropy.

    There are tests your doctor should run to be 100% you do NOT have it instead just saying you do not have it.

    Menopause can worsen Addison as progesterone is precursor for cortisol. Actually in one study rats had happy life without adrenal glands as long as they had progesterone level high up.

  • Are you on adequate replacement thyroxine. What are your thyroid blood tests like? Also do you have Hashimotos? I guess so if you are gluten intolerant

    Got any recent test results for vitamin D, folate, ferritin & B12?

    The ACTH test proves your adrenals can work. But because they are exhausted they don't want to, as they are struggling to cope day to day.

    I experienced similar (not quite as bad) early in my Hashimotos when on too low a dose of Levo.

    When adrenals are exhausted it becomes difficult to increase the Levo dose as adrenals can't cope. I was given propranolol which blocks/lowers adrenaline allowing adrenals to rest (very effective)

    Get referral to an endocrinologist who specialises in adrenal issues

  • Interesting responses - thank you! I Take HRT as I had to have a hysterectomy 2 years ago, and take propranolol for essential tremors. I already take 100mcg daily Levothyroxine. I agree that the test shows that the adrenals CAN work, but don't want to. Honestly I am really frustrated - this all seems to be a mire of confusion.

  • Have you got recent actual thyroid blood test results & antibodies levels

    You also really need to know levels of Vitamin D, folate, ferritin & B12

    If GP won't test then you can, like lots of us, get Private tests - see Thyroid Uk. Medichecks or Blue Horizon do Thyroid & vitamin bundle DIY finger prick test for £99 (often have money off offers) or small cost can get blood drawn at local to you private clinic

    Propranolol increases likelihood of low magnesium.

    Read The Magnesium Miracle - Caroline Dean

    Also lowers parathyroid hormones

    (See last sentence on this link)

    labtestsonline.org.uk/under...

    See my profile on how I have been able to stop propranolol since improving low vitamins (especially vitamin D & magnesium) & going gluten free.

    Propranolol slows uptake of thyroid hormones. In effect it applies the brakes - Levo is the petrol

    thyroiduk.org.uk/tuk/treatm...

    Perhaps you could swop to a different beta-blocker that does not affect Levo uptake

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