Adrenal Insufficiency diagnosed

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I don't have full blown Addisons but my Adrenal glands have ceased to function and I have been given Hydrocortisone tablets to take daily. I have felt brilliant on these and a month back bloods check up at hospital showed that my cortisol level in my blood had risen satisfactorily, which confirms that I should feel as well as I do. However, another blood test was carried out today as part of regular checkups and shows a monumental plummet in cortisol despite the fact that I still feel great and am still taking the tabs. GP says that she wants to repeat the test  tomorrow and is hoping this is a machine blip. Anyone else got any other ideas?

I am baffled and actually a bit concerned. Should I be?

Thanks!

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12 Replies

  • Posted

    What dose of hydrocortisone and how often do you take it? What were some of your most painful symptoms? Thanks. Janelle
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  • Posted

    What dose of hydrocortisone and how often do you take it? What were some of your most painful symptoms? Thanks. Janelle
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    • Posted

      Thanks for your reply, janelle. Hydrocortisone tabs 10 mg twice a day (morning and then at teatime). This is gonna sound weird but I had no symptoms that I was aware of until I started taking the tablets. I now don't have all the early nights I used to have and find getting up in the morning much easier. I feel more alert during the day too. I was never in any pain before the medication, though, and that hasn't changed since I started taking them. Why the level has reduced so significantly in a few weeks doesn't make sense to me or my GP as I have never missed a dose since I am in a clockwork routine of taking them

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  • Posted

    Thanks for your reply, janelle. Hydrocrtisone tabs 10 mg twice a day (morning and then at teatime). This is gonna sound weird but I had no symptoms that I was aware of until I started taking the tablets. I now don't have all the early nights I used to have and find getting up in the morning much easier. I feel more alert during the day too. I was never in any pain before the medication, though, and that hasn't changed since I started taking them. Why the level has reduced so significantly in a few weeks doesn't make sense to me or my GP as I have never missed a dose since I am in a clockwork routie of taking them.

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    • Posted

      Thanks for your reply. I would suggest you do another morning blood test and make sure your fasting. Our cortisol level moves up and down throughout the day. Listen to your body and gut feeling. Sometimes labs are not always accurate. If you feel great i wouldn't change a thing. You could try tappering down( after the blood test). If you continue to feel well then you may have just had an infection that is now gone. I have Lyme disease which is attacking my adrenal glands. Oh. Read SEESMITH POSTS. That person was healed after six months. Best wishes!

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    • Posted

      Thanks so much for your reply. That is the weird thing, I still feel fine despite that reading so I really do reckon it must be an inexplicable glitch. There doesn't seem to be any sense in taking drastic action on the basis of a reading if I don't feel unwell. Maybe something else has prevented an accurate recording of the actual level, who knows? Can't think what that would be, certainly, since I am not taking any herbal stuff which the GP did ask me since it may have played a part in messing with the test. God only knows. I am sorry to hear about the Lyme disease, janelle. Take care and hope you receive the treatment you need. Will check out those posts, Thanks again. smile

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    • Posted

      Thank you. Please keep posting when you get your results. Very interested in seeing what they come back at! Hope you continue to feel better. Thanks for all your help. Best wishes, Janelle

      Ps. Think the discussion was under "my addision disease is gone" Was posted yesterday.fyi

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  • Posted

    Hi, I live in NZ but am English by birth. In March I had both my adrenals and spleen removed so have been living with Addison's since then. I'm on Hydrocortisone 15mg in the morning and 5mg at 4pm plus Fludrocortisone. Am interested in the differences of care between Uk & NZ - my Endocrinologist told me it wasn't worth even trying to measure cortisol levels because they change so much, she said the best measure of correct dosage etc is how you feel - eg whether very tired, dizzy, ill etc I've been fine apart from battling a bad cold, complicated by not having a spleen so I did increase my Hydrocortisone for a few days. Since going on these medications I've never had blood tests but in UK they seem to be routine. Will keep following how you get on and the help other folk offer you. All the best.

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  • Posted

    Thanks, guys. Going to be on my way soon to get bloods done again to see what today's result will be. Not thinking too much about it, just getting on with it and will take it from there. Otherwise, I will drive myself crazy with, possibly unnecessary, worry. Wil post back later. ??

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  • Posted

    Well. Was at the GP and had more bloods down and an urgent result was requested from the lab. Only it wasn't........with the result that I had to wait until 5.30 this evening to hear about my cortisol level. And, for some miraculous reason, it seems to have galloped up to a majestic 466 from a single solitary 8 of yesterday. I'm relieved but also pretty angry that I may be have subjected to a lot of unnecessary worry over a botched reading. In any event, I will be contacting my GP tomorrow for some sort of explanation as to why this happened. So........I am overjoyed, but not really surprised as I felt fine yesterday and still do now. Quite how this reading has been arrived at, I have no clue, but I intend to find out.

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  • Posted

    It could be a machine malfunnction or it could be your body getting used to the meds. 
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    • Posted

      I think the machine must have thrown a wobbly the first time because the reading the very next morning was radically different and in the expected range.
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