Adrenal insufficiency

I’ve been on Prednisolone for 5yrs. I have found it difficult reducing below 5mgs, but eventually got to 2mgs. After 3 months on 2mgs I am having severe lightheadedness, passing urine frequently, struggle to concentrate.excessive sweating and postural hypotension. My GP ordered thyroid, and diabetes bloods, as well as an ECG, all normal. She increased my dose from 2mg to 5mg, it has helped the lightheadedness a little, but still getting dizzy. Has anyone experienced similar problems? Is it possible to check blood for insufficiency without being under the care of an endocrinologist. Frustrated I have just lost all the weight I gained on steroids, and really don’t want to increase dose further and return to weight problems- I know that sounds selfish, but I put over 3 stone in whilst in it. Would value opinions or experiences. Thanks

7 Replies

  • Maureen.

    There are specific blood tests to check for adrenal insufficiency. This is yet-another risk of long-term steroids and one has to be weaned off them slowly while your body recovers normal adrenal function.

  • Thanks I’m pretty clued up on it’s effects after 5yrs. Not sure if I can ask gp for blood tests or do you need to see an endocrinologist? My gp put me back to 5mg and suggested 6 weekly taper, which means it’s a long time before I get back to 2mgs. I just don’t want to keep yoyoing. Would rather have a clear idea on how adrenals are doing. If that makes sense.

  • I haven't I'm afraid. I was taking deflazacort for nearly 5 years before my Rheumy decided after a couple of years of asking that I could try to taper off them. I had to swap to prednisolone to do this more safely as I was on the lowest dose DFZ & wouldn't have a safe dose by splitting the tablets & pred is available in 2.5mg & 1mg. After nearly 6 months I'm now down to 2mg daily & thankfully having none of the problems you're having, for which I'm sorry.

    I don't see why your GP can't take your cortisol blood test for you, unless she prefers that you're still seen under Endocrinology but you can only ask.

  • I’m not currently under endocrinologist only Rheumatologist, who started Prednisolone 5yr ago

  • Sorry, I misunderstood, with you asking is it possible to check blood without being under the care of an Endocrinologist I thought you currently were.

  • Hi Maureen, I have been on prednisolone for about 5/6 years now, started at 30 mg for Sarcoidosis of the lungs, 3 years ago I was sent to one of the wards at my local hospital where they did a Short Synacthen blood test, this tests the adrenal gland as to how well it is producing cortisol. I was tapered down to 5 mg slowly, then had some problems so another test was done and it confirmed I wasn’t producing enough cortisol myself so they upped my prednisolone to 7.5mg and it looks like this is going to be for life.

    I know how you feel about the weight gain, I too have put on a considerable amount over the years due to steroids and other meds. I would look up this test as it gives you all the info you need and then ask GP for a referral for the test.

    Good luck, hope this has helped in some way. I so wish I could come off the steroids too.


  • Thanks Titchyi, I see my regular GP 7/11 so will discuss adrenals more. I’m aware of the synactgen test, where I live they discourage using it on patients still on steroids. Yet in my ward we occasionally omit steroids to do the test. I didn’t appreciate my adrenals have been struggling for months. Had a lot of the symptoms for a while, like urinating frequently, craving salty food, dizzy and unable to concentrate. I was also getting postural hypotension where my bp dropped on standing. I went up from 2 to 5mg, although still dizzy. I have the feeling after 5yrs I too may be on a maintenance dose, like you was on 30mgs for a while. Thanks for sharing your experience 😁

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