Hi everyone, this morning I was lucky to see a fabulous Endocrinologist. He was a very charming and excitable Greek gentleman who had to keep standing up to explain with his arms what he though was going on with me. He is writing to Rheumatology because he doesn't think it is right that they haven't seen me for a year, he said he would do 'their blood tests for them' and added a few extra. I am having a Synth test for my adrenals on Monday morning. The only bit I am not sure about is he wants me to go down 1/2 mg to 3.5 immediately he says it will help with certainty in the test, so I am willing to give it a go until Monday, I usually come down 1/4 mg. He asked why I do not take AA and I said it made my hair fall out, and I am pretty sure that was the cause because it was the only med I stopped and my hair immediately grew back. He looked on his phone and said that it only happens to less than 1%. I did point out that someone has to be that minority and he conceded it was possible. I did come away feeling cared for, I am unfortunately on another hospital round after not seeing a doctor for a year, but I suppose it is for the best.
Oh, and despite being stiff and in pain for the whole time I have had GCA and three doctors saying it could not be PMR because I can lift my arm up, he has added PMR to my condition.
He also said that my weak arms and legs are muscle damage from the Pred, denied by my last Rheumy.
I could easily adopt him, not because he agreed with me but he backed up what he said with science and treated me like I owned a brain cell.
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Hellyowl
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How lovely! My Sheffield Endocrinologist was charming too and drew diagrams for me. Is it something about this specialism that attracts interested, enquiring minds?
I was taking 5 mgs when I had my Synacthen Test. I wonder how my below normal result was affected by this?
This Endo wanted me off Pred and on to the Hydrocortisone equivalent to stimulate my Adrenal function. I am still in a quandary and have conflicting advice from my very good PMR/GCA interested Rheumie.
My Endo was of the opinion that 5mg was still too high for some so their adrenals would be still very sluggish, even with the kick of the stimulant in the test.
That helps with the decision I need to take. I had what I can only describe as the whirly gigs in bed last night. I felt desperately sick and dizzy ( no alcohol had been taken). I became scared that it was Adrenaline related. I blindly took an extra 5 mgs this morning. I imagined that my body was searching for more because of a minor stress event. I’ve just wanted to sleep today. I don’t really know what I’m doing.
Blimey Jane you are in a quandary. Hope you can switch the mind off a bit once you sort it out. An extra 5mg shouldn't do any harm. Did you feel any difference?
Apparently it will be 3.5 to 4mg when I have function tested.
Is he located in the Tyne & Wear..........as my Endo was a Greek and I loved him tobits.
Take a book and, if like me the place you for the test will have a comfortable chair and be a cosy warm place.
I managed to read two pages, fell asleep and they woke me with a cup of tea and had marked the place in my book and took my glasses off and kept them safely. Best time I have ever had in hospital. There was a TV on, but not loud. Others fell asleep as well so I was not the only one comfortable and we were not all having the same treatment.
Wonder if he is related, but I cannot remember his name and my records are at the bottom of the heap - waiting to be decimated once I go through the stuff.
Weather too good at present to waste time indoors.............rather be outside with a coffee, brandy and a fag. Two more names given to me by friends, "Brandy Queen' and 'Fag Ash Lil's Mother'. 👿
Hi. He said it is very personal. He has a patient who took pred for 15 years and her adrenals switched back on but another won't switch back after only a year of low dosage. He saw me as an individual not a standard description. Mine is in Peterborough. It may be that it is a very scientific part of medicine that makes them different
Sorry for causing this - there is a space at the side for birthday wishes because they cause extra work for the mods. My fault. Thanks pinks33 wish I was 33!
The endocrine system is, basically, the ductless glands - there're a few of them - and an Endocrinologist is a physician who specialises in everything related to them. Includes diabetes, thyroid, adrenals, growth hormone . . . . Lots n lots!
Yes I feel more positive today, despite being stiff as a board this morning. i feel I might be nearing the end of the journey. (probably not but it is good to feel that way)
Can I ask if you live in the UK? I went to see a rheumatologist privately when I was first diagnosed with PMR and then handed back to my GP who is very good but has never referred me to a Rheumy or endocrinologist ( during 2 years) although I have 2 other auti immune conditions. I’ve been more or less self managing my Pred and thyroxine . I live in SW London so would appreciate any recommendation for an endocrinologist, NHS or private. I’m now on 2 mgs Pred and wonder if I need a Synacthen test?
Hi, I live in Peterborough and he was NHS. The reason I am getting the test is last year when I was on 7mg I was very tired and in a lot of pain. (GCA and denial from doctors I had PMA) Rheumy at the hospital said it was adrenals, Endocrinologist he referred me to (same one I saw this week) said I still had GCA so they sent me away for a year to see how I got on reducing to 4mg dead slow. (Or maybe die and never trouble them again, my nurse friend said cynically). My GP practice have never tried to manage my condition, in fact when I had a flare the GP said "you probably know more about this than me". I think it is down to how much a GP thinks they know about the condition
Your record beats mine - at 19 years of taking pred. But I have become anxious about symptoms of adrenal insufficiency as I'm now at the 7.5/7 reduction stage. Every time I feel dizzy, tired or in any way weak, I am getting worried that it might be a symptom even though I've had all these feelings throughout the time I've taken it. I'm sure you're right that it would be best to stop worrying and go on reducing slowly until I've reached the qualifying level for a synacthen test, though that does seem to very from doctor to doctor.
I have come to realise that it is easy to develop a tendency to blame the Pred for everything when we might just be naturally tired, getting older, picking up a bug from the grand kids, just the stuff that would knock you off balance if you didn't have GCA/PMR and Pred. I am certainly guilty of that one 🤦♀️
Hello there. I'm so glad you have had a positive experience and that he realises that being able to raise your arms doesn't mean NO PMR. I truly hope I am as fortunate when I eventually get to see an endocrinologist or even the new rheumy I have been promised. Good luck xxx
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