Hi everyone
I had a cortisol test recently and it measured 28, according to my rheumatologist it should be between 133-540approx. She is sending me for a Synacthen test but in the meantime I was wondering if anyone has any thoughts on what, if anything, I should be doing to help.
I am experiencing dizzyness, nausea and of course the deathly fatigue (but that's nothing new).
I'm on 7mg of Pred and she told me to only reduce by 0.5mg a month, I was reducing by 0.5 a fortnight .
Thank you
There is absolutely no point having a synacthen test done while you are still at 7mg pred - that is more than enough to suppress the natural production of cortisol by the adrenal glands. It is to be expected at this stage.
The only thing that will bring back natural production of cortisol is achieving a lower dose of pred - even at 3mg some people have results similar to what you got. There has been a lot of discussion about this recently, it is a shame you have missed it. Your tapering at 1mg a month may be what is recommended but for many people it is too fast, Even 1.2mg per month is on the fast side. SnazzyD was tapering that amount every 8-14 weeks if I remember rightly. She has written many good posts about her experiences.
If you go to the FAQs and look under Adrenals and Tapering you should find very helpful collections of posts about it and now you have posted the Related Posts have appeared and almost certainly have useful comments there.
There isn't much you can do to help except continue to taper VERY slowly, eat a good diet and rest as you need to get through this pretty foul stage of adrenal recovery. If you increase the pred which would make you feel better, you lose the trigger to wake up the process. There are no magic answers, no helpful pills, no potions. An endocrinologist might suggest switching to hydrocortisone (HC) - but you have two things to balance now, managing the PMR inflammation and symptoms and persuading the adrenal function to wake up. HC might be better for that if it suits you, it doesn't everyone, but it is very poor at managing PMR.
It is patience and plugging on I'm afraid.
Thank you I will take a look at the FAQs
I am so dense at the moment....I know one thing as you have said above only very slowly lowering, will wake up the adrenals, Since beginning of the year I very slowly went down to 4.5mg, have been there now about 5 months......I have worsened every week.......w hat puzzles me is the Endocrinologist has said stay there don't lower!....she will see me in a years time!.....how on e arth will things change if I am getting worse....In the spring this year my sister and me booked a coach trip to a lovely town, then afternoon tea on a lake for my birthday next month... no way could I do it now feeling as I am, struggling to walk round my garden with heavy painful legs, and so weak.....if it was PMR maybe I would up pred for a couple of days, but I'm supposing that's not possible how my adrenals are struggling.....
Sorry to go on about it,but I have a niggling feeling with so many other symptoms something else is going on. ..........just wish I was still seeing Max to possibly get some answsers!
I think that she probably thinks you need much longer and you are on a dose that is at the cusp that SHOULD be low enough to get things going but is a replacement therapy level so you should be OK and she isn't ready to give up yet. I linked a paper the other day that suggested that 2 years is not unusual before things wake up although one patient still wasn't getting anywhere after 3 years.
I think the only option you have at present is to get your GP to contact them and tell them you simply cannot continue this living death which is worsening month by month, can they please see you again sooner. I think they forget that we need to be able to function too and at our age, we don't have a lot of time left, If necessary, exaggerate to the GP because I know MY mental health would be going down the drain if i was merely existing as you are.
My mental health is going down, my sister rang this morning she was talking about how things used to be, I had to stop her, too upsetting! I have never actually seen an Endocrinologist, only phone calls, should have been rung last week, they didn’t! Have rung them again end of this week, they may have one day to ring me because the secretary to the secretary said they will be busy in acute medical., so frustrating. Yes, will be ringing GP, I hate feeling this low….
Thank you sorry to go on about it
No, you are quite right to go on about it - and you deserve better, I think it is a piece of nonsense she hasn't seen you because without seeing you she cannot appreciate how ill you are, You MUST demand an audience with the GP and the receptionist needs telling this is an emergency - that you are having bad thoughts because you don't want to live like this much longer.
Thank you, I do feel sometimes like you have said, which is so unlike me. As we say, quality of life is the main thing…..Will ring GP tomorrow and stress to the receptionist.
Woke up today in persistent mood......rang the Endo dept, as usual secretary took down details said doctor in tomorrow, also did ask how long to wait for an appointment....January next year!....Now sitting in summerhouse, Endo doctor now rang me on her mobile!....conversation was my symptoms do not sound like adrenal problems....because a year ago reading was 316 with the short test done at the hospital, so I said but would my symptoms be because my reading had dropped to 187 a few weeks ago..she said don't inte rrupt me, as I have just said, not adrenal problem!....she said because of dizziness etc, she wants to see me on Tuesday to take my blood pressure laying down, then standing up.....how lucky am I....
I will be going to my GP after seeing her, if ruling adrenals out, I want answers.....
How rude. I would not accept that - I would want to know why the cortisol has fallen too and why she thinks THAT is not an adrenal problem. Sounds to me as if she is just looking at one half of the results. And is an arrogant young lady (not what I would like to say either) ...
My Endocrinologist said doing a Synacthen test is a waste of time over 4mg of Pred. Even then he preferred lower because depending on the individual the adrenal glands can be too suppressed for the test to be meaningful. I can safely say that 7mg was a horrible time of not enough Pred to feel ok but too much still for the adrenals to get the message. I felt like a shadow of myself for months. At that time I had nobody to advise but had a hunch that I needed to slowly reduce, at that point 0.5mg per 4-6 weeks. Once I got to 5mg and feeling like there was light at the end of the tunnel I lengthened the period. When I saw an Endo at 4mg they said reduce 1mg per month and I politely told them where to go on the grounds that I had to survive a day of looking after my father-in-law and the house. It did my way and they had to choice but to go with it.
Who on earth suggested you should have a synacthen test while you were on 7mg of steroids? It is rather like trying to fill a glass when it is already full. No wonder you had such a low score.
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