Adrenal insufficiency

Could I ask for people feed back on recent BH tests? All the nhs tests, I was told, were normal (one taken in a very stressful situation in A and E. One was a short synacthen test, which gp did and said was normal)

However, I paid for a BH saliva cortisol test, which came back as all 4 readings throughout the day as very low.... the morning one being very low. I've just got back a blood cortisol and DHEA test (the ACTH I had done was botched and arrived at lab unfrozen, so having that repeated next week):

Morning cortisol (blood) 161 nmol (166-507)

DHEAS. 2.2. umol (0.7-12.5 )

BH gp said this was a little low and suggested further testing. The same as was said for the saliva test...... how much testing do I need to have before I am offered treatment! Grrrrr

A retired GP I talk to on occasions believes I have stage 4 adrenal insufficiency (Entering Addison) but I don't seem to be able to get nhs interested. I'm very ill now. bed/wheel-chair-bound, severe muscle weakness , having myoclonus attacks. Referred to neurology, who are diagnosing (by exclusion) FND.... but I still feel I have an endo problem too.

Seeing an nhs endocrinologist (referred by A and E) on 17th May. I want to feel armed and ready. Checking in with you guys always gives me courage, plus it would be good to know if others with similar results, signs and symptoms, have been offered appropriate treatment. Thank you :o)

11 Replies

  • That blood cortisol level is low. Ideally should be 500 in the morning on waking. It should be taken at really need to push this. It's terrible that you are left so long before you can see someone. Have a list of your symptoms ready, if it's written down you are less likely to forget anything. He will take a brief history but then send you off for more bloods and more waiting for the results I'm afraid. Good kuck

  • Thanks so much steenygirl!I just needed to hear it from someone, as I feel, like a lot of us members, that I'm going insane! I'm going to have to take my partner anyway as I'm so I'll I can't walk.... So he will fight my corner too. I'll do as you say and go fully prepared. I am worried about keeping my body waiting so long as it's clearly suffering, and I worry, if I do have Addison's, that I might have a crisis episode. But I'm talking care as much as I can.... Just a lot of waiting. Waiting. Waiting.

    Thanks again :)

  • I know it's more waiting but the end is in sight and if you do feel like you are slipping into crisis A&E is the place for you, it will all add to building a picture. I know what it's like I have struggling for 20 years - not as bad as you, but getting progressively worse and living half a life but feel I am finally getting someone to listen and run tests but yea another 8 weeks to see consultant again for results, unless I suppose my cortisol ACTH challenge turns out to show something significant. Just have to wait for that appointment first!!! The beauty of the snowed under NHS

  • I'm sorry to hear you've been struggling for so long.... having chronic problems is harder than acute on-set..... So I do hope you get answers and more importantly, treatment! I did look into buying Hydrocortisone and self treating, but I have other health conditions going on, so I need to be seen to be behaving myself in terms of nhs protocol! Lol..... but if you decide to go down the self medication route, there are people on the site who can message you details of companies to get meds from. I hope it doesn't come to that, and the years of waiting come to an end for you soon, and you are treated with the empathy and respect you so deserve. Let me know how you get on. Xxx

  • Thank you so much. The GP practising functional medicine did prescribe hydrocortisone for me and also suggested I go back to GP for gastrienterologist referral as my tests showed other concerns. I was wary of hc without monitoring as I felt my bones were already struggling and had lost 1'in height over last 2 years and Dexa scan has since shown significant bone density loss with osteopenia in L3 and L4. Endo yesterday raised concern re scleroderma which would answer a lot of questions. So a thorough check up is better than going in and treating some symptoms. I wish you the very best of luck and let's hope 2017 is the year to get on the right path for all of us struggling with chronic health problems xx

  • Sounds like you've been through an awful lot for an awful long time. Take good care, and yes, let's hope this year is the year where answers and treatment are given. Thanks so much, again, for replying to my post. Sometimes we just need a friendly voice in the dark!! Take care xxx

  • You might want to join the adrenals yahoo group:

    They may know more about Addison's than your endo...

  • Ooooh thank you kitten 1978. Appreciate the link. I will join just now xxx

  • You'll have to do some searches for the relevant buzz words - cortisol, ACTH, DHEA, adrenal etc, to find stuff that may be relevant to you, but this document is well worth taking a copy of :

    It's updated fairly regularly and shows you about all sorts of endocrine testing, patient preparation for testing, how to carry out testing - timing, fasting, not-fasting etc, and how to interpret results.

  • Thanks humanbean! Yet again, you've been so helpful to me. I shall look into that. Hope all is well with you? Xxx ;)

  • Things are no worse than usual. :) Glad I could be of help. :)

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