Feel rheumatology appointment was a waste of time !

I saw a rheumatologist on Thursday who was very nice and explained things well. He confirmed I have fibromyalgia after an examination of trigger points and also said I have joint hypermobility syndrome (it seems I have passed this syndrome to my children with my 22 year old suffering badly with her knees) He explained all my symptoms I am having are due the fibromyalgia and the joint hypermobility syndrome. I said I knew about fibromyalgia and it can be linked to hypothyroidism which he agreed with.

My doctor admitted on my referral that I have hypothyroidism which amazed me as she keeps saying it's not my thyroid despite having a positive TPO antibodies blood test a year ago.

He suggested some physio and a visit to the pain clinic which I told him I have had attended them already on previous occasions and it has not helped. He asked me if there was anything I wanted included on the letter to my doctor and I said I would like to have an increase in my levothyroxine (taking 50mgs at mo) as I found when I started it first it relieved my symptoms for a while before symptoms came back. He said he would put that in the letter so I hope my GP agrees I might benefit from a higher dose and told him that my GP has said the Levothyroxine may do more harm than good but he said our GP's do a good job. (Bit my tongue thinking of all people on this site having trouble been diagnosed with thyroid problems by their GP's)

He could see I was not looking happy at the end of the appointment and asked why and I told him I already knew I have fibromyalgia before I even went there and felt it was a waste of time.

Now just got to wait to see what GP thinks of his letter and I am hoping that she will up my Levo.

4 Replies

  • More important is you get gp to test





    vit d3



    ALL SHOULD BE IN UPPER QUADRANT OF THEIR RANGES. Not just "normal" or in range excuses

  • Yes I was to also diagnosed with FM many years before the Hashimotos. I think as well as having all the vits and minerals tested it is also important to have the FT3 tested to see how your T4 tablet is converting. I had relief when I started treatment late in 2005. About two years ago I went onto T4/T3 and after another year I now take just T3. VitD - large quantities - also helped the recovery from pain. Of course it is all relevant. I can still find very painful matching spots on shoulders/elbows/spine - but so much better....

    Hope you have good news from your GP and that you are able to increase your dose. I have a sneaking suspicion that people with auto-immune issues are more likely to suffer from FM - so it may be worth addressing the diet and healing the gut. It can make a big difference. I had Crohns diagnosed some 40 years ago so have had to address the auto-immune issue over the years. There is lots of information out there - but if you would like some info then I am happy to help.

  • Why do you need a "diagnosis" of fibro? That's like going to the doctor and he presses a few points and tells you that he has diagnosed you with a "headache". You know you have fibro, what you want to know is what is causing it. Idiot. (The doctor, that is, not you.)

  • Hubby visited Rhumy with his aching weakened muscles, Rhumy squeezed his muscles here and there and said there was nothing wrong with his muscles :(

    Rhumy asked if there were any other symptoms ?

    :) I pulled out a 'long' list of (Hypo/Fibro) symptoms from my pocket and read them out to him.

    He didn't seem to want to know, so I said they were all Hypothyroidism type symptoms, he checks his computer monitor for Hubby's blood results and said that Hubby's Thyroid test was 'negative.'

    I did mention nicely and politely that often thyroid blood tests come back as normal even though patients are not feeling well.

    He said he'd been doing job for 30 years so should know that there was nothing wrong with Hubby's muscles.

    I just bit my tongue and replied that it was good news that Hubby's Muscles were all OK, smiled and we got out quick.

    Round the corner I shouted AHHHHHHH!

    I jokingly told Hubby to stop moaning about his muscles as nothing was wrong with them ;) :)

    I have written to Hubby's local Doctor explaining Rhumy says Hubby is OK, but that Hubby is still in pain with his weakened muscles, can't lift a Kettle or hold a mobile phone to his ear for long, plus the whole lot of Hypo/Fibro symptom/pains and asked for a printout of his last lot of blood results.

    Monday I will phone and see if the blood printout is ready to pick up.

    Can't believe that the Rhumy didn't suggest any other help for Hubby or point him elsewhere. ?

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