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Adrenal Insuffiency

Posted , 9 users are following.

daisylazy
daisylazy

Hi all

I am back again looking for help.Diagnosed three years ago with pmr.Following the dsns method got down to 3.5 mg of pred .Two months ago I developed such awful fatigue and it was only when reading Eileen's response to another query that it dawned on me to ask my doctor for a cortisol test which showed up as very low .I am now waiting for an appointment with an Endocrinologist but am so worried about what it all means .Would be grateful to hear if this has happened to anyone else and what the future holds .Any advice on anything I could do while waiting for the appointment. Lately my CRP shot up to 200 .Would the two be connected .Thanks again this forum has been a life saver .

0 likes, 16 replies

16 Replies

  • EileenH
    EileenH daisylazy

    Posted

    The CRP has nothing to do with adrenal function - but has it gone back down? Did you have a chest infection at the time? If the CRP has gone up it is a sign there is inflammation somewhere and you GP should be investigating a bit. And at that level it isn't very likely to be "just" PMR.

    All that happens if you don't recover adrenal function is that you will continue to take pred as a replacement therapy - just like using thyroxine for hypothyroidiam or insulin for diabetes. The endo may suggest hydrocortisone - but often pred is used if you are happy on it.

    In the meantime try to avoid stress and overdoing it. And if you feel really unwell don't hesitate to call an ambulance.

    • daisylazy
      daisylazy EileenH

      Posted

      Thank you so much Eileen .You have relieved my mind greatly and yes I had pneumonia when my CRP was raised .Due a chest x ray and see Specialist next week so hope that will be sorted .Can the adrenals recover .
    • EileenH
      EileenH daisylazy

      Posted

      Then the CRP was almost certainly entirely due to the pneumonia - even a dose of bronchitis can send it shooting up!

      Yes, the adrenals can recover - if you are patient and reduce very slowly it can and does happen for the vast majority of patients. One top PMR rheumy likes to keep patients at 5mg pred for as much as 9 months before they reduce further and it does seem to help.

    • daisylazy
      daisylazy EileenH

      Posted

      Thanks Eileen that's good to know .The only thing is I have been on 3.5 for a year .I was sticking there because as you often said it was the dose that was keeping me steady so should I stick there and hope adrenals recover .or increase a little .

    • Anhaga
      Anhaga daisylazy

      Posted

      Do you ever try a .5 mg taper to see if you can?
    • daisylazy
      daisylazy Anhaga

      Posted

      Hi Anhaga if I taper any lower won't my problem with severe fatigue get worse ...As I am now I could sleep 20 hrs out of 24 and have no energy to do anything .Thank you for your reply .

    • EileenH
      EileenH daisylazy

      Posted

      If I ever get back to 5mg I shall refuse to try lower!!!! These are low doses, they are way below the amount of corticosteroid the body produces anyway so will be prodding the body to make a bit more in the form of cortisol. I refuse to compromise - I take what I need to be able to function. Sleeping 20/24 is not functioning is it? Your doctor should be looking at your adrenal function if, after a year at a low dose, it isn't improving. 

    • daisylazy
      daisylazy EileenH

      Posted

      One more question Eileen .I am having the synachen test on wed .They told me to stop the pred for that day only on acc of my corticol being very low .I know you mentioned three days .Do you think it will be accurate with only stopping one day .Thanks
    • EileenH
      EileenH daisylazy

      Posted

      I don't think I have ever said three days, though I think I remember someone saying something about mroe than 24 hours - if I did it was an error. No, you take your normal dose in the morning the day before and NOT the dose the day of the test - which makes it a full 24 hours pred-free before the test for most people - almost everyone takes their pred in the morning.

      There isn't an "accuracy" as such to worry about - the test is just to find out if your adrenal glands are CAPABLE of producing cortisol when prodded hard. It doesn't mean they ARE doing so - there are lots of individual factors involved and any one of them can be wrong. It's like a car needs more than a charged battery to start the engine - fuel and all sorts of other things have to work too. The simplest thing to rule out is whether they are working. If they are - then they look at other things.

  • susan08542
    susan08542 daisylazy

    Posted

    Daisy, Hope I am not diverting discussion. But the 20 hours of sleeping caught my Full Attention. I am only 6 months into my PMR journey and have been able to taper from 15 to 10 pred. Wish I tolerated pred better than I am. Headaches, major mood issues, hair loss, and weight gain. Just had color ultrasound of temporal arteries to rule out GCA. All clear and no scalp or jaw issues, just headaches. But my fatigue is overwhelming! I try not to sleep more than 12hours yet I easily could. Your severe fatigue could relate to recent pneumonia. But I feel PMR contributes to out fatigue in a huge way! Please be extra aware of your body regarding any indications of illness. Pneumonia can have major complications even when you might think it is over. Best thoughts for answers, solutions and good recovery. Susan

    • daisylazy
      daisylazy susan08542

      Posted

      Susan I am sorry you are having such a hard time on the pred .Thankfully I never had any problem with that and managed to taper to 3.5 fairly successfully. I always had the fatigue but not like I am now .People have told me that it will take time to recover after pneumonia but now it seems my adrenals are the problem .Will post after seeing the Endo and in the meantime I am taking it easy and avoiding stress .Thank you for your post and good luck on your journey
    • EileenH
      EileenH daisylazy

      Posted

      Recovering from the pneumonia WILL take some weeks, possibly even months, but there is obviously an existing adrenal problem too which is probbaly contributing to the excessive fatigue since the pneumonia.
    • daisylazy
      daisylazy EileenH

      Posted

      Thanks Eileen for all your replies .Hope you are doing OK and your husband who is having his own problems .I will know more when I see the Endo but my doctor is on holiday for two weeks and I'm hoping he sent off the referral before he went .

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