I know I’m writing this post late but I’m hoping that I might get a few replies back before tomorrow afternoon. First time visit to see and endocrinologist tomorrow after seeing the Rheumatologist a few months back. I was concerned about my Adrenal function and in the end the Rheumatologist said she’d write to the Endo Consultant and see if he could explain it better. So I have a long awaited appointment. I’m not sure what will happen or really quite what to say but she, the Rheumatologist suggested due to my extreme tiredness I have an Adrenal test but the Endo doctor seemed reluctant to see me unless I was on 4mg of predisolone for many months, this is all very well but it’s not easy being on a low dose and feeling like crap all the time. Anyway long story short another letter exchanged an appointment appeared. Any advise of questions I could ask? I’ve felt pretty awful for a long time, tired especially and although long past menopause hormonal throughout a month with peaks and troughs of wellness and feeling lousy. The endocrine system covers more organs than the Adrenal but I don’t know how to approach him tomorrow. Any advice gratefully received. Always a worry when seeing a new Consultant.
First appointment at the a Endocrinologist - PMRGCAuk
First appointment at the a Endocrinologist
It is a worry and there is the added pressure of making the most of these precious appointments. The outline of your symptoms that you gave us here will be sufficient. The hormonal system is so complex, I would leave it to her or him to give you the appropriate tests. If you are expecting a Synacthen Test then you should be free of Prednisalone for 24 hours prior. My Endocrinologist was a charming man who made it all very easy. He does want me to stop Prednisalone completely and take Hydrocortisone 25 mgs instead, 3 times a day with fairly steep reductions. This is because it behaves more like our own Adrenal system with peaks and troughs and is therefore more likely to stimulate Adrenal recovery. I am not at all sure about this course of action. I have had PMR for 3 years and I don’t think that it’s quite done with me. My Rheumie wants me to reduce Pred slowly (5mgs) and supplement this with Methotrexate especially as she thinks that I have Psoriatic Arthritis. Personally I would prefer just to reduce the Pred and cope. The fatigue seems less in me and can be dealt with by sleeping when I need to. I had no difficulty swapping round the clocks in Australia because I am used to chunks of sleep over the 24 hour period. I seemed to need less in that climate. Good luck with your appointment, I hope it goes well. At least you are leaving no stone unturned in your recovery. I was on 6 mgs when I had my appointment, probably making the results a bit irrelevant . I got to 5 mgs whilst in the humid heat of Australia which my body liked. Not my Psoriatic feet though!Let us know how you get on, take notes if you are Pred heady like me. X
Thank you Sheffieldjane. I will bear you’re advise in mind. First appointment is always the worse I just hope he’s nice and I can talk to him.
I got down to 7.5mg of pred (having started at 60mg for GCA in August 2016) nearly a year ago where I have stayed feeling increasingly fatigued and generally unwell - but no symptoms of the GCA headaches and bloods fine. My Rheumatologist was very suspicious that it was adrenal insufficiency making me feel like this so referred me to an Endocrinologist, the first one said no point in testing me until I was at 5mg but the second endocrinologist contacted did not agree, gave me the synthacen test (don't think I have spelt it correctly), found I had zero adrenal function and said he thought it very unlikely they would function again but come back when I got to 5mg and they would test again. My Rheumatologist says she has found that some of her patients who had been on high pred for a long time often hit the buffers at 7 or 8mg.
I can't reduce more so waiting for another appointment to be prescribed supplementing with hydro-cortisone.
So don't take no for an answer, it's not an exact science, and the experts all have different opinions.
Good luck.
Thank you very much I need it.
I would be very interested to hear how you get on today. My adrenal insufficiency is very low (according to blood test) & have been waiting 4 weeks for a synacthen test for which I have been on 15mg of hydrocortisone for over 2 months. Have tried to hurry things along but still waiting! Had got down to 2.5 Pred was so pleased with myself now very fed up! Just keep telling myself could be so much worse 🙄. Good luck & hope your consultant is approachable & helpful. X
Thank you Pollyanna16, me too. As long as he’s approachable and I can get my point over without feeling on trial, I’ve seen some doctors in my time and you only have to get an arrogant one and it puts you off your stride. I’m probably worrying for no reason.
I know that I most probably won’t get the opportunity to have one at this point it’s Just the first appointment with the endocrinologist. He made it quite clear in his letter to the rheumatologist when she enquired about having a test that it would be a while before I will be allowed to have one and at least being on 4/3 mg of predisolone he seems that he’s not going to do one as the results will not be that defined. I know he’s going to ask ‘why I want one’ and I don’t know what to say. I’m not sure that the PMR has burnt out entirely it’s been just one 2 and a half years not a great time in the scheme of things so he’s going to say that it’s not worth it until you are very low and we can be assured it’s worth doing. My main concern is the way I feel on a daily basis one week I’m quite ‘wellish’ with more drive and energy other weeks I’m so weak tired non motivated and can’t do much at all (more often than not). It’s this irregular well being that’s the problem but I’m going there for an answer to this test question it’s introducing another things I’m not sure how to tackle. I can’t even go away on holiday as I find it too stressful with how I’m going to feel when I’m there.
I hope you find an answer, feel very rough myself like that, with the odd day or two when I feel a bit ok, then slap bang into feeling rotten. On 4.5 forever , trying to get to 4 as my GP said I had to reduce by 1 mg a month now and be finished with Pred in the next few months. Not going to happen!! Three years on it now. Let us know how you get on. Best of luck.
Thank you powerwalk. It’s nice to know I’m not alone feeling this way, it does interfere with living though. It’s hard to plan anything as you know it could end up making you feel bad especially if you are still out. Hard to have a sleep when you are in company but I often feel like that or wish I was back home. I will let you know.
Oh i know exactly! Im fed up sitting in company just trying to hide the tiredness and wishing i was home! Im avoiding everything i can!!
Hi,
I'm on 4mg and my Rheumie won't hear of me having a synacthen test, he says I'm 'doing very well' and to keep reducing as and when I can and symptoms will improve eventually!
I would say to the Endo that you would like an answer re your fatigue, if there is one, and some reassurance that you will gradually recover (tongue in cheek) if he doesn't agree to any tests at the moment. Have all your notes with you and the dates when you've reduced. You can't say anymore and the consultation will evolve as you go.
Personally I don't want to have the test and more drugs I'd rather ride it out as I am - the fatigue just means rest more and I do have better days in between plus the sweats are less frequent now - they started again last September when I reduced to 4.5mg from 5mg.
Let us know how you get on.
Thank you for that Telian. Yes I have the feeling this is the case with this one as he wants a patient to be extremely low and have a succession of bloods before a synacthen test. I think you put it in a nut shell ‘do I want the test?’ well no not really but I do want to know more about this terrible fatigue and what to expect something my Rheumatologist couldn’t tell me. That’s very good advise about what I can say, I have some notes to prompt me and when I reduced. Be glad when it’s over though.
I'm sure you'll be fine, he's there to help and if he doesn't say what you want to hear you can question him. Tell him you've waited a long time to see him and you're looking for his expertise which will hopefully make you feel better. There comes a time when we have to trust them and if not you go elsewhere. At least you're not on your own, not much comfort I know, with your symptoms. If symptoms become too much then you go back saying you're not coping. I do think it's a time thing though, debilitating as it is.
I went to see Endo because I had terrible fatigue so he advised an adrenal function test when I was on 4mg pred - the test came back ok. There is another side to this story, he said that extreme fatigue can also be caused by low Vitamin D. I had the blood test and it came back extremely low - 11, should be between 75 and 125. I then took large doses of vitamin D capsules for 2 months and when tested the results came back at 77. I now take vitamin D regularly at 2000 units per week and the fatigue and aches and pains have gone. Might be worth mentioning this to your Endo.
I’m so glad you found a reason for your tiredness. I have a normal Vitamin D and I take it through for prescription with calcium. Thank you for bringing your experience to me I think ever little imput helps.
Not sure that I can offer a lot of advice. So much depends on the Endo's approach. I too despise the unknowns of that 1st appointment with a new doc.
I saw an Endo last October after 4+ years of PMR. My concern, and that of my current GP, was secondary adrenal insufficiency. At the time I was trying to get below 9 mg and really felt best at 12 mg and the only symptom I had on reducing for several months was fatigue, often totally debilitating. I also found it difficult to focus/concentrate (had stopped driving), lower BP than what I considered normal for me and other things I can't remember at the moment. I had hoped to talk to him about the possibility that I wasn't absorbing the full amount of prednisone ( absorption can be as low as 50%).
Well, after explaining the fatigue and other symptoms, he me told me not to worry about adrenal fatigue, that I was simply sensitive to drops and flares and to simply continue to reduce slowly. I was so pleased to have support for what I had been doing I forgot to ask about the absorption issue!! I'd never had that kind of support from any physician prior to that time. Of course I kicked myself after leaving the office.
I have a follow-up appointment this July and will try to have that discussion again. I've also learned that the normal physiological level of cortisol can vary from person to person with 7 as the average, so I hope to discuss this element too if pred brain doesn't fail me again. I think I'll bring hubby along with me to give me a nudge if needed.
In the meantime I've had a flare and have yet to get back to 9 mg. I'm currently dropping from 12 to 11 and the fatigue is starting.
Perhaps this experience might offer you some indirect advice.
It’s always a challenge to get everything you want to say across to a stranger who knows nothing about you and how many times have I got out of a cocnsultantion and remembered something I should have said. He gave me some of the answers but not the hope to an end to this or a direct solution and I’m guessing there is no quick fix. I double up on a flare but although it eases the pain I still feel tired and unwell.
I hope all goes well in July and that you get yourself sorted nuigini.
Well, I saw Mr Fowler this afternoon and thankfully he’s very nice we talked about lots of things but basically the readings of my Adrenal gland is extremely low so he’s going to do another blood test to see if it’s changed from January if it’s the same or near theres very little point in giving me a synacthen test as it’s not going to achieve anything and just cause me unnecessary pain. At 4mg he things this will indicate if my Adrenal gland is waking up so hopefully the figures are on the up. He also emphasised that it can take months sometimes years to get it back to normal ( between 200-300) in the meantime it’s a waiting game. Also he said he’d have a word with my Rheumatologist to see if she thinks I should come off of predisolone and that my PMR has finished? If she thinks it has then I could go on a dose of hydrocortisone. Also he’s giving me a load of other test, thyroid although it’s normal with levathyrizine, celiac, CRP/ ESR and hormone test too, load of other things which might be the key to my not feeling very well generally. Next appointment is November.
Don't think jinasc would agree there was too much pain involved - just a single needle stick to get a catheter in the first time.
Well I’ve gone through a lot more pain than that in my life So I don’t think this wouldn’t have been a problem.
Yes I was wondering about the ‘unnecessary pain’
I’ve read that some can feel a bit quaint during an ACTH stimulation test, dizzy, flushed, nausea.
He did say the stimulate they put in after taking the first bloods they take will get the Adrenal gland ‘stirred up’ but I wouldn’t notice this at all. I don’t know as I’ve never had one but I’m sure this is a personal thing we all have different reactions with any preceedure.
So glad he was so nice. I thought the synacthen was to help kick start the adrenals but it doesn’t sound like it. Interesting & pleased he has offered more bloods to hopefully get to the bottom of it. X
No, the Synacthen Test is just to see if your Adrenal Glands have the capacity to work again.
No - test not treatment ...
Oh dear I must have been misinformed I read this somewhere but heavens knows which website!
Not what you're looking for?
You may also like...
First Rheumatology Hospital Appointment - UPDATE
Increased heart rate at 5mg predisolone
Taking Pred the right way
Appointment with endocrinologist
Worry of Adrenal function
Related Posts
Rheumatology appointment at last!
Stomach pain saga- another update and Rheumy appointment 
First Rheumatology Appointment Moderation team
