Help please anyone who has been to see a Rheumatologist

I have been referred to a Rheumatologist for investigation into chronic pain please can anyone tell me what happens on your first visit what sort of questions are asked , do they do any type of tests is so what? I would like to be prepared if they want to ask me anything.

I am hypothyroid and have been for 14 years and am on levo 100 mcg a day I am suffering chronic pain all over my neck shoulders arms hips knees so need to find out the cause

If anyone can give my any info on what to expect on my first visit I would be grateful



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15 Replies

  • You will get a full examination lots of questions weighed take a urine sample blood pressure nothing to worry about but if it helps write down your main concerns and pains as a help sheet. They will want to know when and how the pain started and how it affects you.

  • Thank you tracynoe, I usually jot down what I want to ask about because I get nervous and sometimes forget half the things I wanted to ask so I will do that, also did you mean I should take a urine sample with me? I can never seem to oblige when I am asked on the spot !! So I think it might be best to go prepared, I am still awaiting my appointment so don't know when It will be.

  • Yes take a urine sample with you they test it for blood protein etc very important to see if there is kidney damage.

    Good luck

  • Hi Gigi, I saw a Rheumatologist in 2011 as my GP thought I might have fibromyalgia. He asked me about my symptoms and about my work and family. He did a pretty thorough physical examination plus blood tests for thyroid antibodies, Vitamin D and calcium. However, I don't know if all Rheumatologist follow the same routine as him. I hope it all goes well for you and you get one like mine who is actually interested in hearing about your symptoms. Good luck xxx

  • Thanks confused77, I think it is probably to check for Fibro that I am being referred for too,I have asked several times if I might have it but that particular GP said there is no test for it and that was the end of it, however the one I saw last who made the request for an appointment for me is a bit more helpful this time so, since I seem to have pain in most of the trigger points that they indicate for Fibro I expect they might check for it

  • In his letter to my GP the Rheumy said I had fibromyalgia as I had 13 of the 19 trigger points and also fulfilled "the new fibromyalgia criteria which do not require the presence of trigger points". So your first GP was wrong by saying there is no test. However, I have no idea what the new criteria are, I did try googling for them but had no luck. I do remember him asking about my problems sleeping and when I woke up in the night was it always around the same time. When I was later diagnosed as having Hashimoto's I presumed that meant that I didn't have fibromyalgia after all as the symptoms are so similar but because my TSH and T4 levels are 'normal' the Endo and GP say I have both Hashis and fibromyalgia. However, I do wonder whether my symptoms would improve if I was given thyroid treatment. I see from responses below that you are on Levo and, like 1973GB, I wonder if you might need an increased dose - it would be worth tryng to discuss this with the Rheumy. My Rheumy seemed to have a good understanding of the thyroid.

  • A couple of links:-

    Go to the date November 23, 2001 on this link:-

  • Thank you shaws for your reply and for the web links I see a lot in these articles that refer to my situation I will read them several times. And make a few notes before I go for my visit to the rheumatologist

  • Hi confused77. I went to see a Rheumatologist in 1986, and as I recall, there were many many blood tests and xrays. Had a diagnosis for mixed connective tissue disorder. Nothing after that. Maybe this was the start of my Graves Disease raising its ugly head, but they were very thorough. Hope this helps. Lynne x

  • Have you got your latest thyroid blood test results along with the ranges?

  • Morning Muffy,

    yes I do have my latest test results,but have to go again in 1 month to get another test because I did, as I mentioned 1973GB stop taking my levo,without permission( so to speak) and got told I should never do that (so my results are NOT as they should be at the moment)

  • Hi Gigi

    I went last year and was referred by my Doctor as having suspected Fibro. The appointment was as "Tracynoe" says below but with the addition of the specialist checking the pressure points to confirm the diagnosis. I am also hypothyroid. I dont remember having any bloods taken though.

  • Thanks 1973GB as you can see from my replies to the others post Fibro seem to be the relevant issue that most of us are referred for, but I have a feeling that the Levo plays a part in my pain also so we will see what transpires when I go to the hospital for my this space as they say!

  • Hi Gigi

    Pain in the hips and knees etc seems to be a common trait. Although i must say i was on 100mcg of levo and since increasing to 125mcg the pain seems to have lessended which makes we wonder if i do have fibro.

  • Hi 1973GB

    I have tried stopping my levo to see if it might be the culprit and found that my pain decreased,but i am back on it because it is not recommended that you stop taking it,however I did not consider the fact that I might need a larger dose hmmmmm like you I am normally on 100 mcg it is such a minefield this thyroid disease everyone is an individual as far as treatment is concerned isn't it!!

    Thanks for your reply

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