Completely confused needing advice

Posted , 3 users are following.

So, I've been on steroids on and off for over a year due to autoimmune arthritis. Had a steroid injection a few weeks ago then went to see my consultant this week for a routine appt. I'd lost half stone in 4 weeks, I've been feeling incredibly tired, forgetful, emotional and nauseous. Consultant sent me for bloods to check cortisol. Then the same night we were woken by an ooh GP who'd been contacted by the lab as my cortisol levels were so low. Since then my consultant has told me the level of cortisol in my blood was just 10%of what's considered normal and that it's serious and that i am likely to need hydrocortisone for the rest of my life. My GP has told me it's likely my immune system is attacking my adrenal glands. I am completely thrown by this and haven't been given a diagnosis. Can anyone give me any advice?

0 likes, 6 replies

6 Replies

  • Posted

    Sounds like they are telling you it could be Primary Addisons Disease. .But before we jump to conclusions, go and make an appointment ASAP...if it is it Addisons it can be fatal if left untreated ...have you got brown patches or marks appearing on face body gums etc
    • Posted

      Thank you for replying to my post kenzii92818. I've read up primary Addison's and can relate to many of the symptoms. They've just given me hydrocortisone tablets to take every day along with a tapering dose of prednisolone. Who should I go and see? My GP just gave me the pills the hospital had asked for. From reading up on Addison's, if I do have it i understand i should be educated. I really do appreciate any information you can share. Many thanks

    • Posted

      Hi jane17946 they should see you to explain it all, preferably the hospital as they understand it better than the GP would need fludrocortisone if you have primary Addisons..hope they have explained how to taper the prednisone correctly it has be done slowly...I have had it 8 years so nothing to worry about..just top up a bit more hydrocortisone when your not we'll with a temperature etc .or go to the dentist to have work done..also ask for the injection kit for emergencies that's a must read all you can about it and how to try and protect your bones from osteoporosis with diet and some vitamins like D3 etc

  • Posted

    Hydrocortisone is a synthetic version of cortisol, which is what your adrenal glands [should![ produce. It is an anti-inflamatory, so low cortisol could explain your arthritis symptoms: you have a very clued-up GP to have realised you needed that test!

    Since the HC tablets are to provide the cortisone you should have had anyway, you shouldn't find it a problem. People who get unpleasant side effects from HC are usually getting it on top of their natural cortisol.

    I've got secondary Addisions and have been on HC [20 mg /day] for four years without any probs. On the contrary, HC has changed my life enormously for the better. So in your case, I think you have every reason to be optimistic.

    You might find the web site of the UK Addisons Society useful.

    • Posted

      I should have added this:

      * You need urgently to find out (and brief your family) about "adrenal crisis" a.k.a. "adrenal apoplexy". If this happens to you, you need an ambulance or paramedic calling immediately - it's a life/death situation.

      * You need to get and wear a medic-alert bracelet or dog-tag that says you have Addisons, in case you are in a traffic accident and unconscious - the ambulance crew need to know what to do without waiting for you to wake up, which might never happen otherwise. (No need to get an actual MedicAlert ™®© ! You can find perfectly acceptable alternatives online).

      * If you are in the UK, you should get a "steroid card" from your pharmacy.

      If you haven't had a thyroid test, it would be a good idea to get one, just in case the problem is more than just your adrenals. (implies secondary rather than primary addisons).

  • Posted

    You should see an endocrinologist, to help clear things up a bit. And do research so you pick a good one. I was diagnosed at 9 and have been in cortef and flornef every since and have been fine. But you should definitely get things cleared up with a specialist

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