Graves’ disease, in remission since May 2018 but in lots of pain

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In the spring of 2016, I started to feel unwell and to display various of the symptoms of hyperthyroidism. The first symptom I experienced was physical pain.

In May 2017, I was diagnosed with Graves hyperthyroidism and started taking medication. By the autumn of 2017, my thyroid levels were back within the normal range and all the symptoms of hyperthyroidism had diminished considerably apart from the pain.

In May 2018, my endocrinologist suggested that I stopped taking the antithyroid tablets because my thyroid levels had been within the normal range for months, and I did so.

Because of the ongoing pain, last May 2018 I was blood tested for rheumatoid arthritis with all the results being negative apart from a positive antinuclear antibody (ANA) result (CRP <1 rheumatoid factor negative; cyclic citrullinated peptide antibody negative; ANA positive with speckled pattern and a titre of 1:640). In August 2018, I had a rheumatology appointment and was told that I did not have rheumatoid arthritis and that a positive ANA was not a diagnosis of any disease.

My last thyroid function test was taken in October 2018 and showed that my thyroid level is still within the normal range, i.e. Serum TSH level 0.7 miu/L [0.35 - 4.94].

Again because of the ongoing physical pain last November 2018, I was blood tested for Addison’s disease, coeliac disease and hypercalcaemia. All test were negative.

In the last 2 and half years, the physical pain has progressively got worse and I have needed to take more and stronger painkillers. For a year now I have not been able to make it through the day without painkillers.

I was wondering if anybody is experiencing or has experienced pain like me.

I look forward to hearing from you! 😊

SolSun

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  • Posted

    Hi , you did not mention what kind of pain you are experiencing but I am assuming you are referring to joint pain since your doctors tested you for rheumatoid arthritis. Btw, a positive rheumatoid factor and the presence of cyclic citrullinated peptide antibodies make a diagnosis of rheumatoid arthritis very likely, but the absence of these two does not exclude this diagnosis. Some patients without these antibodies and with a negative rheumatoid factor can still have rheumatoid arthritis.

    Did you have a scan or imaging of your joints? Did the scans show any form of abnormality?

    Is your pain constant and dull or sharp and acute? Did they check your uric acid level (to exclude gout)? Finally, do you currently take any medication?

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    • Posted

      Hi DanR,

      Thank you for your replay.

      Yes, I feel joint pain in both my knees, fingers, hands, wrists, forearms and just my left shoulder (not the right one).

      In June 2018, I had a knee X-ray and was normal. I have never had any scan or imagining of my joints.

      My pain is constant. When it started in the Spring of 2016, it was dull, but it has progressively become a combination of sharp and acute periods mixed with dull ones. I have felt pain every single day for the last 2 and a half years.

      No, they have not checked my uric acid level.

      Yes, I take medication every day. I take a mixture of Paracetamol 500mg, Naproxen 500mg and Co-codamol 15mg/500mg.

      Tomorrow, I am seeing my General Practitioner (GP) to discuss pain management because my Endocrinologist is talking about discharging me because my thyroid levels are within the normal range.

      Note: I live in the UK and my healthcare is provided by the NHS rather than private medical insurance.

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  • Posted

    Where in your body are you feeling the pain?

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    • Posted

      Hi Linda,

      Thank you for your replay.

      I feel joint pain in both my knees, fingers, hands, wrists, forearms and just my left shoulder (not the right one).

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    • Posted

      I had joint pain and what works for me is the prescription drug Arthrotec. I take 75 mg daily. It has been on the market for 40 years and most docs prescribe newer NSAID type drugs. It needs to be taken with food though. I first was given it many years before when for one week I had a tennis elbow kind of pain. I went to a walk in clinic and the doc prescribed this and within 5 minutes after taking it, I was pain-free when I had been almost on the floor with pain before that. So years later when I developed joint pain, I asked my doc for that specific drug. My brother took 100 mg a day and it stopped his pain. He had to stop taking it though because he has heart disease and these types of drugs (NSAIDs) should not be taken by patients with heart disease. I think your diet is important also.

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  • Posted

    Graves disease is autoimmune, its entirely likely you have another different autoimmune disease. I have a very high Ana, 1:1280 and it took another probably 6 years after that was positive to get a positive anti ro. They diagnosed me with undifferentiated connective tissue disease. Somewhere around sjogrens and lupus. I had non autoimmune hyperthyroidism though, mine was toxic nodule. It could be that you have another autoimmune disease, what other antibodies have they tested. Have they done a full autoimmune panel?

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    • Posted

      Hi Panda2life,

      Thank you for replying to my post.

      They have only tested for:

      • October 2017: anti-TSH receptor antibodies, and I was given a diagnosis of Graves hyperthyroidism.

      • May 2018: CRP <1 rheumatoid factor negative; cyclic citrullinated peptide antibody negative; and antinuclear antibody (ANA) positive with speckled pattern and a titre of 1:640, but I wasn’t given a diagnosis of anything.

      I have never had a full autoimmune panel done.

      In the UK, the medical model used is based on taking a history and diagnosing accordingly rather than doing lots of tests. Doctors decide what tesst they want to request no the patient.

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  • Posted

    Hi SolSun,

    I wonder if your GD antibody (TSI) is still high and active in your body system while you are in euthyroid? ATM may be able to control your thyroid level, they won't cure the underline autoimmune disorder. Have you tested TSI when you became euthyroid? Did you take any naturpath treatments for lowering TSI? Unless addressing autoimmune antibody, our body health probably can't be without problem or improved effectively. P.S. I think pain pills are the big enemy of our immune system (even asprin).

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    • Posted

      Hi Mike,

      Thank you for your reply.

      Yes, it is possible that my TSI antibodies are still high and active even though I am euthyroid, but they were only tested in October 2017 and I don’t know what was their level anyway.

      No, I did not take any naturapth treatments for lowering my TSI. What do you recommend?

      I don’t like taking painkillers either but I cannot cope without them.

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  • Posted

    Hi All,

    Thank you very much for sharing your knowledge and experiences of Graves disease with me.

    I have one more question for everybody:

    When I saw the rheumatologist last August 2018, he suggested that the cause of the pain might be the result of losing weight. In my case, he said that the lost weight was not fat but muscle mass, and as I now have less muscle mass, my joints are not supported properly and that is why I feel pain. He recommended exercising to recover the lost muscle mass and to work with a physiotherapist to put together a relevant exercise programme for me.

    So I followed his recommendation and the following day I saw a physiotherapist who said that my muscles were fine and that he could not do anything for me to help me reduce the pain. He could not explain the cause of my pain and said to exercise if I felt like it.

    I was exercising regularly before the rheumatologist recommendation, so after his recommendation, I just kept exercising, but so far I have not noticed any improvement, but I'll continue anyway.

    So I was wondering if any of you have been advised to exercise to reduce the pain?

    Also, if you experienced pain like me, how long did it take you to get better?

    Thanks again and I look forward to hearing from all of you! 😊

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