My regular GP (who acted immediately when I presented myself with GCA symptoms) talked with me yesterday. She thought my symptoms indicated an urinary infection. Today a urine sample came back negative. I said I thought they indicated adrenal insufficiency. She will phone me on Monday.
I am 83 year old male who for the last three weeks, uncharacteristically, gets up tired and weak. I have no appetite and feel nauseous all the time. I have no energy, and I sleep most of the day. I'm too fatigued to do anything and easily get irritable. I generally feel a bit better in the evenings
I was diagnosed with GCA in October 2019 and started on 60mg Prednisolone. I have had an uneventual reduction to 2mg.
I had a knee replacement on the 14th January 2021. It has healed well and I don't have any substantial problems with the knee.
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Sounds like could be adrenal problems; they certainly ring a bell with me. Good on the GP to look elsewhere as well though. Perhaps you need a Synacthen test to see if your adrenal glands can work if given the signal from the brain. Sometimes it’s the steps in the brain that don’t fire up but at least you know if the glands themselves will do the business. You could perhaps see if your doc is happy for you to have a couple of extra mg to see if you feel better. If so, that’s more evidence and it may be that you need to go up a bit and then reduce more slowly in order for your adrenal glands to catch up. A year a 4 months to get to 2mg is pretty fast too.
Sounds like Adrenals to me too...when she rings maybe ask for Synacthen test. Checks adrenals are capable of working, but not necessarily that they actually are, but it’s a start.Only trouble it’s an out patients appointment.
Certainly the first thing I would be checking up on! The first thing she should try is a 9am cortisol level, even before a synacthen test as that seems to get them in a tizzy!
Did you get adrenal cover during the op? And to be honest - after a big op like that only 4 weeks ago you are maybe still very much in recovery from that. It is a massive insult to the body and would have needed a LOT of corticosteroid for your body to deal with, and now the healing. That's the direction I'd be investigating.
I have been off pred for 3 months now after GCA. I was feeling pretty fatigued and not getting any better. Blood test last wk for cortisol was right at upper end of normal, so guess thats not the problem?
Probably not! But there are lots of other things to get back to normal after the time on pred. And the current situation isn't really encouraging us to be feeling energetic is it?
I agree with the others, see if you can get a referral to an Endocrinologist and in the meantime you might feel better if you increase your Pred by a couple of mgs - do not go over 5 mgs because it will spoil a Synacthen Test.
Problem is that getting a referral to an Endo is a hurdle, what PMR pro said is corrrect a 9am cortisol level generally proves whether you need one or not and it costs zilch, where the Endo costs the GP.
Rheumy's cannot refer you direct, they have to write to your GP and then they decide.
The present system is a nightmare CCG's need to be changed.
Thinking back to when I had a TKR I agree with PMRPro. A TKR is a big operation and will have knocked your body for six and if your adrenals are not capable of giving a full output yet, then this will be the result. If you are unable to get the tests then a short term increase in Pred may be worth considering.
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