Adrenal insufficiency

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hi, I'm new here. long story short, I had an acth stim test done because my cortisol was low. I was recently diagnosed with myasthenia gravis and was on prednisone, so I stopped that for a week before the test. test results said my cortisol was .5 away form being low and my acth was low. I get a call from the drs nurse and she just said I have adrenal insufficiency and since I was on prednisone already to call them if im ever dropped below 2.5 mg and they will see me in 6 months. I looked at my labs online and it said I have mild adrenal insufficiency. after looking on Google I don't see anything about MILD adrenal insufficiency, and there are also 3 kinds of adrenal insufficiency. I'm kind of at a loss right now as to what I have. I did see my regular dr. and he said the end didn't write any notes, now I have to wait to see a new end just to know what I actually have and what my future holds. any input would be nice. I have sjogrens, myasthenia gravis and now adrenal insufficiency. the prednisone is not helping. I think it's making me worse.

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  • Posted

    hi stephanie..I had adrenal insufficiency several years ago eventually cleared up after a few years of in and out of hospital I have been re diagnosed for it the term I have been told is Adrenal Insufficiency / Addisons..I'm no health worker but adrenal insufficiency is a lack of cortisol ( the main gland Adrenal that deals with stress ( real stress .not I'm skint or nothing in for tea. ) It can make you fatigued constantly aching back, joints ,stomach pain .tearful or easily upset at things that would not usually bother you often not known to people with A.I. I am on hydrocortisone which obviously has cortisone..your prednisolone though a steroid could be for your other conditions. I am only aware that hydrocortisone helps adrenal insufficiency ..I would get back in touch with your GP and endocrinologist as not to worry you but a lack of cortisol could be fatal and if steroids the ones I am on are brought up with nausea it must be a visit to A and E for iv hydrocortisone..sorry can't help any more but there are rules like if you are feeling more unwell you have a sick day rule where you must double up your steroids for 3 days and carry a steroid dependent card.also things like letting the dentist know if you have extractions..you sound like you've been dumped with this like I was I have had to find out everything myself..if I am incorrect and the prendisolone is ok sorry but never heard of it for adrenal glands good luck. There are only around 8.500 people in the UK so it's not so well known yet ..stay away from anyone with chicken pox..Re the mild ..I have only heard of Adrenal fatigue which apparantley has the same symptoms but is not really acknowledged as a condition. do not take tablets after 6pm as the body doesn't need cortisol at night and you won't sleep hope this little info helps angie

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    • Posted

      thank you for the response, I had low cortisol before starting the prednisone. I do have vomiting quite often before I was even diagnosed. you have told me more than the dr has! he wasn't even going to see me for another 6 months! it's scary to be left in the dark about a new disease. I'm going to see him tues, but only because I was persistent. I've already got a new end. lined up for the next thurs. I don't know anyone who has this either. thank you so much. I hope you get feeling better. have a great day!

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    • Posted

      oh I started taking the prednisone at night because it makes me tired, I guess it's not supposed to do that. my neurologist wanted me to take imuran, but I think the side effects outweigh the benefits for my myasthenia gravis. and from what I've read myself, cortisone is what is used for adrenal insufficiency, but my endo said since I was on the prednisone, to call them if the ever put me be low 2.5 mg of it. and that's all that wad said (via an email)

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    • Posted

      Yes, it does seem like you have to keep pushing the docs. I was quite poorly (in hindsight) by the time I got to see an endo. So hopefully you will get taken seriously now . My cortisol was on the floor, so the endo put me on HC straight away and within a week or two I felt like a million dollars. When your score is on the margins, it is not so clear-cut as to what to do.

      The main thing is to stay away from people who want to sell you snake oil - sorry, distilled water for "adrenal exhaustion".

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  • Posted

    Speaking as someone who had Addison's Disease (the other name for adrenal insufficiency), I found the best thing to do is not guess what you may or may not know.

    Neither should you listen to the first doctor you are referred to.

    Instead search for the best endocrinologist (who is a hormone specialist) in your area and be guided by her. Or him.

    I can literally say that a foolish endocrinologist misdiagnosed me BADLY and only when I found a good one, my health improved out of sight.

    Good luck.

    Also, if you don't feel great with prednisone you can mention to the endo that you want to try hydrocortisone. That was my story and I was on hydrocortisone for 2 years and then that was it.

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    • Posted

      Glad you got sorted.. At last found someone non health professional who knows what they re talking about.. And lo and behold back in hospital preventative A. Crisis. 7 days on still no clue.. Sick of being Sick! Happy Bank Holidays all of you

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  • Posted

    thanks for your reply. I did find out I had secondary adrenal insufficiency . I am going to ask to be switched to hydrocortisone at my next doctors appointment

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    • Posted

      I see. Secondary is a consequence of another event e.g. pituitary surgery or something else. Depending on what else ails you, it is highly likely that you'll be on hydorcortisone supplementation for a while and then you'll have no need for it.

      Of course there are some folk who are kept on it for life.

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    • Posted

      Secondary is when the pituitary gland doesn't tell the adrenals to produce the goods. (Cushing's Disease happens when the pituitary doesn't tell them to stop).

      The usual reason for secondary is an (almost always benign) tumour on the pituitary, so that the part of it that should send out the signal hormone (ACTH) becomes inactive: result = adrenal insufficiency / Addison's Disease.

      Pituitary surgery is further down the line and only needed in some cases.

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  • Posted

    Your endo should have prescribed HC and anything else you need? On average, a ordinary family doctor will see one case like yours in a career: you are it! You can't expect that she will have all the details at her finger-tips. That is the specialist's job!

    One matter to be aware of with secondary AI is that it arises because your pituitary is not working properly. It <i>should</i> be sening a signal hormone (ACT hormone) to your adrenals to produce enough natural cortisol. But now you know that it does not. So here is the problem: your pituitary is responsible for a variety of signal hormones that switch on and off the major hormone producing organs.

    <b>So you need to get your thyroid function ("free T4) checked; </b> also growth hormone, testosterone or progesterone/oestrogen, vasopressin, no doubt others that ordinary Joes like me have never heard of. Depending on the state of your pituitary, you may only have the deficiency you already know about but you may have more. I really hope your endo did all those tests: it should be in the report they sent to your doc.

    The other thing you need to do (annually) is go to an optometrist for a "visual field test", to make sure you aren't losing peripheral vision. If you are, you need to go back to your endo urgently. But hopefully it will never get that far.

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  • Posted

    I have found out that I have secondary adrenal insufficiency. I am now on hydrocortisone. I met a very nice lady from this site who is also in the same predicament as myself. we both have secondary adrenal insufficiency and myasthenia gravis. I was wondering if there is anyone else out there who has the same diagnosis. My neurologist said he has never met anyone with the two and the lady I met from here says her doctors said the same.

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  • Posted

    my endo didn't say much of anything, they did the growth hormone and testosterone tests. he told me to come back in a year! I asked my Neuro to switch me to hydro. I think I need a different endocrynologist!!!!!

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