Cortisol low,and I’m not well

[Hirondelle]

My rheumie (who is wonderful, private, Suffolk) asked my surgery to do a 9am cortisol test as I have been on 3mg of Pred for many months. Last night I was up all night vomiting and diarrhoea and today I feel weird. The cortisol result was posted on my NHS app this morning - 98nmol (133-537. The GP who signed it off put “abnormal bu expected. No further action”. I have just talked to another GP, who said no worry as it was higher than August 2021, when it was 62 nmol. Should I just let this go and hope that my horrible night of v&D was norovirus or whatever? I have tried to talk to my rheumie but she is busy.

I would appreciate any comments, thank you

[SnazzyD]

I would get medical opinion for sure because you already have adrenal glands that aren’t very frisky. Add to that possible poor absorption of the Pred and you may have very little reserve at all. One symptom of an adrenal crisis is nausea and diarrhoea but a bug could obscure this, plus a decent gastro bug can make you feel terrible. Low cortisol function can give you low sodium as well which is further exacerbated by diarrhoea and vomiting. You might need a hydrocortisone injection to tide you over for example so don’t delay.

My levels were not great around 4mg but I got there except in extreme circumstances by 1mg. In the meantime I was prone to being pushed too far by systemic knocks.

[Hirondelle in reply to SnazzyD]

thank you SnazzyD, that is really helpful. Yes, I found from the internet today that vomiting and diarrhoea can be a signal for an adrenal crisis. And I feel floaty, but as I couldn’t sleep, that’s probably normal. Am going to see nurse this pm so that she fee my tummy, where I have painful lumps from time to time. I haven’t seen a GP for 2 years…

[PMRpro Ambassador]

I fear it is NOT "abnormal but expected". At 3mg you would hope it was a bit better than that and really you need a rescue pack of hydrocortisone to have to hand in case of an emergency. Snazzy has said the rest I'd say.

What dose were you on in August 2021? I imagine more than 3mg - and then it WOULD be expected.

[Daffodilia]

Hope you get this sorted - May I know name of rhuemi please - I live near Suffolk and have used private health care there

[Hirondelle in reply to Daffodilia]

my rheumatologist is Dr Anita Weerakoon and I see her at the Nuffield Hospital Ipswich. She is a really good doctor, treats you holistically in that she looks beyond the evident. And you see her for an hour with no feeling that she is rushing you through.

[Daffodilia in reply to Hirondelle]

Thanks Hirondelle - I am ok at the moment on 6 mg pred but diagnosed in 2018 so always wondering when I might need a good specialist - thanks for your reply and good luck

[Canarylady]

hi both,I also have problems,I haven’t seen a rheumatologist for years or a doctor,I have been trying to keep myself going on my own,I live in Suffolk too,the last time I saw a rheumatologist was back in 2021 in nufffield in Ipswich,she asked my doctor for tests etc to be carried out but she didn’t do anything to help me.so I ve been left on my own,I ve cut down on my pred but sometimes I get my pains coming back I m now on 7 mg of pred,depending on where you are in Suffolk perhaps we could meet up somewhere?

Ruth