Does anyone know of a doctor that could help with thyroid issues, but mainly
adrenal issues please apart from Dr P?
I really need help trying to get off the Prednisolone, I'm trying CT3M and using
T3, but need some extra help, I'm fed up with trying to do this on my own.
Thanks.
I don't understand what it is you want - other than an endocrinologist and in that case it won't make a lot of difference whether they are private or NHS. If you have adrenal insufficiency problems then you aren't going to get off steroids - because replacement therapy using artificial steroids is what happens there.
Just because someone makes claims about a so-called "miracle" it doesn't mean it works.
I just went to a FNP who is into bio-identical hormone replacement therapy (BHRT). We're going to do a saliva test checking deficiencies in many different hormones and also a thyroid test. I never knew that the ovaries, adrenals, and thyroid all work together on keeping things in balance. I also want to get off prednisone, because of the damage it does, and it is also not a fix. From what I understand it's just a bandaid. So why couldn't it (PMR) have something to do with this imbalance of hormones, thyroid, etc. Especially after menopause because now the ovaries are not doing their part and the adrenal and thyroid have to pick up the slack.
I'm in the US. I don't know if you have a dr. or nurse that deals with BHRT, but it may be something to check into. I mean something caused all of us to have PMR. Why couldn't it have something to do with this imbalance. Have you or anyone ever heard of BHRT?
PMR is the symptoms of an underlying disorder. One is due to hormonal imbalances and can be treated by HRT and I have "met" people with it. They weren't helped by pred though. That can be identified by doing hormone tests - perfectly easy to have done - and I don't think the ESR/CRP show much either.
The PMR we discuss here usually burns out in a few years and the pred manages the symptoms to allow a decent quality of life. But pred isn't all bad - not using pred allows uncontrolled inflammation to damage your body - and increases the risk in the long term of vascular disease and some cancers.
I wish you well in your search - but you aren't very likely to find practitioners via members here. The vast majority are in the UK. There are maybe 10 or so, spread all over the US so the chances of one being near you is small.
Hi,
Thank you for your reply, but for some reason my post is in the wrong place, I wanted it in the Thyroid Uk group.
Sorry about that, but thank you anyway.
Best wishes. x
PMRpro...
Sorry, I'm trying to understand your post. Are you saying that you know people with PMR that have been helped by BHRT or just HRT? Also, are you saying there are different kinds of PMR, and that pred only helps a certain kind?
I know pred isn't all bad. I'm thankful I finally got it when my pain was a 10 on the pain scale. But, I now have osteoporosis...
I know you had mentioned that the first 5 years you had PMR you weren't being treated. I'm just curious, how did you manage? I know I couldn't move a fraction of an inch without severe pain. I don't mean to be too personal, but why did you wait so long to be treated?
Thank you...
I didn't wait by choice - I repeatedly went to the GP who did bloods, the ESR/CRP weren't raised and I was only 51 at the start - too young. I saw one rheumy who was just rude and dismissive (a colleague of my husband so heaven knows how she dealt with Joe Public!). After about 5 years it went totally downhill and I could barely move. Another doctor decided I shouldn't drive as I had also had a transient global amnesia and she thought it might be epilepsy - so I managed to get to our appartment in Italy where things were better - no stairs etc etc. It gave me a lot of time to do research - and I worked out it could well be PMR. GP still wouldn't do anything so I was sent to a rheumy who wasn't significantly better than the first. But he did give me pred for 6 weeks to help with a trip to the USA. In 6 hours I was back to normal! Good enough proof for me - but not for the rheumy who wouldn't listen. However, another GP in the practice was convinced - I hadn't seen her before because she was only part time and not there at all half the time because of maternity leave. Then I moved to Italy - and that has been much simpler.
How did I manage it? Aqua aerobics classes most mornings, Pilates and Iyengha yogo when I could manage it and Bowen therapy all helped with the mobility. I was never out of pain though and first thing in the morning was hell. I could manage stairs one step at a time going down and on hands and knees going up or hauling myself up with the handrail. It wasn't pleasant - and far worse towards the end.
Yes, polymyalgia rheumatica syndrome is just the symptoms of something underlying - it can be one of several autoimmune problems, thyroid or other hormonal problem, vit D deficiency, some cancers or the presenting symptoms of other forms of arthritis. The diagnosis of PMR is an exclusion diagnosis - you rule out everything else first and then try moderate dose pred. The form we discuss here is pred-responsive, hence the emphasis on pred.
There are medications for dealing with osteoporosis too - and it is all a balance of what works and what doesn't. In the case of the form of PMR that is associated with giant cell arteritis - the only thing that manages it successfully is pred. And if you develop GCA then the only thing that stands between you and the possibility of losing your sight is pred.
Yes, I was told that if pred doesn't take away the pain, then it is something else. I also had difficulty getting a diagnosis because of normal blood tests, and being only 57.
Thank you 
That isn't entirely true - late onset rheumatoid arthritis can present in a very similar way and pred would almost certainly help that too. It is just there are other medications that work that are perceived to have less in the way of long term side effects as well as working better. There is a lot of detective work not only in diagnosing what autoimmune disorder is causing the symptoms and also which medication is the best.
However - good luck in finding an answer.
Does anyone know if there are any reasons not to fly with PMR/GCA & do I need to have additional insurance?
Diet book for PMR - anyone know of it?
Please does anyone know a private Rheumatologist in Cornwall or Devon who I would be able to go and discuss my osteoporosis with? Thank you.
Does anyone know the name of an osteoporosis medication commonly prescribed in 1990s? (UK)
Find a Doctor that works you & PMR!
