rheumatologist referred me to endocrinologist as Cortisol levels low
He booked me in for a synacthen test. Which I had 3 weeks ago.
I havnt got an appointment with him till end of August. I contacted his secretary who spoke to him and he said that level was inadequate and to continue with 5 mg of prednisone rather than decrease it till I see him.
I am feeling very tired fuzzy head poor balance is this due to low cortisol
Of COURSE your cortisol is low if you are on 5mg pred - that is plenty to suppress the production of cortisol by the adrenal glands. You are very likely to need to get to a lower dose of pred to trigger your system to start working again.
For some people the fatigue and other adrenal sufficiency symptoms are still there even at what should be an adequate dose of pred to function. SnazzyD has written a lot about how she felt at this stage - the dose of pred isn't really enough to function well but the adrenal function is sluggish in returning.
Yep that was me when I dropped from 5 to 4.5 then 4 a few years ago, was in a very bad state. The only option to try and get the adrenals working again was to substitute hydrocortisone for the Pred, but you can only so that if the PMR has definitely gone away and you don't need the Pred to control inflammation. Looking back they really should have given me a small dose of Pred plus the HC. My GP and rheumatologist at the time at the time were absolutely clueless as to why I was so ill, I sussed it out myself, with lots of help of course from people on this forum. I've learned to question EVERYTHING.
If you’re still on 5mg your cortisol could well be low as because for some this is still high enough to fuel suppression if your adrenals aren’t raring to go. For this reason my Endo wouldn’t do a test until at least 4mg. At 4mg my Synacthen result still wasn’t great but they said to keep reducing at 1mg per month! I declined and did my own thing on the grounds that I felt dreadful. Just shows how opinions vary. By 1.5mg I was not just feeling better but the result of the repeat test told me so.
Low cortisol can make one feel tried to the core, brain in limbo, shakey, weak, anxious or low just to name a few symptoms.
thank you for your reply I guess you ll just have to carry on with 5 mgs till I see the endocrinologist. I am worried about my imbalance and terribly fuzzy head. Just wonder if I could increase the dose for a bit.
It’s a tricky one. Increasing the dose just puts off the process of the adrenal glands being challenged by letting them off the hook and supplying cortisol replacement by pill. However, there is also safety to consider. If you are at risk of falling etc an increase might be necessary followed by a very slow reduction introducing 0.5mg over weeks. A couple of days of 1mg (if you felt ok on 6mg) might help with the diagnosis because if it is adrenal glands you should feel the improvement provided you don’t over do activity and stress. In order to cope with the low cortisol year I had to seriously cut down my life to just the essentials at home.
I might just increase my pred to 6 mgs for a bit just to see if it helps. And try to slow down, but that’s not easy as I’m quite active. Thank you for your reply
You might be quite active, but you have to earn to pace yourself... and hopping up and down on Pred doesn't really help the adrenals [different if it's a flare] - it just makes the process longer.
Please read through link I attached in previous reply...
Going up may well help - but all it does is delay the process. Even if you didn't adjust your activity for PMR/GCA, at this stage it is almost essential if you want to get to lower doses of pred and eventually off it altogether. The difficulties of getting through this stage are inevitable really.
I was for a very long time on 5 mg.......for several months have been lowering to .4.5mg....feeling rough most of the time....diz zy/balance bad/ heavy fatigue, less sleep.....I'm determined to drop and maybe stay at 4 eventually.....hopefully my adrenals will kick in to some level....Endocrinologist ringing soon, maybe for a ACTH test.....we carry on the best we can.....good luck!
Won’t repeat what already been said, but maybe have a look at this re adrenals-
I really do despair of some of these doctors. I am amazed some of them even qualified.
I also tested as insufficient at 4mg with a synathcen test. My rheumatologist suggested that I stay on that dose indefinitely. I am not convinced that I can't get lower. I haven't because my legs get stiff if I go below so I am assuming that PMR is still active but I haven't especially had adrenal fatigue symptoms. Currently my dose is waiting to settle down again after an op and COVID but hoping to return to 4mg soon and work towards 3.5mg.
I am awaiting a Synacthen test requested by the Endocrinologist and the nurse booking it for me said anything under 5mg was ok. But she said she could not book the test while I am using vaginal pessaries which contain estradiol so I have to wait six weeks. Is this right?
I’m tapering from 4mg to 3.5mg and feeling rubbish but now find I have low haemoglobin and haematocrit (ie anaemia) so thinking the fatigue, brain fog and general malaise may be caused by that. If it’s not one thing it’s another at the moment!
I suspect she may be wrong - Cambridge Uni Hosps says
"Females
If you are using the oral contraceptive pill, or oral HRT you will need to stop them for six weeks prior to your test as they can affect results. If you are using an HRT patch or pessaries you may continue to do so. If you are stopping the contraceptive pill you must use an alternative contraceptive to avoid pregnancy."
How low is your Hb?
I’m sure you are right about the pessary, as did my doctor. I am waiting for a call from the endo nurse to offer an appointment.
My haemoglobin has descended over the past two years and is now at 115, haematocrit at .351. The GP is concerned about aplastic anaemia, I think it is more likely to be my meat free diet and lack of interest in food and cooking due to fatigue and lots of tedious health issues.
Now at eight years of dealing with PMR and the side effects of pred, struggling with sciatica or some other nerve pain since January, gastric problems and the surprise finding of an a larger pituitary gland, my health has worn me out this year.
low cortisol help please 
Cortisol test result
Suffering severely. Cortisol too low.
Appointment with endocrinologist
