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

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

5 Replies
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Which anti-bodies were tested ? Is it possible you have Hashimotos and Graves. You really need more than the TSH tested. How are your vitamins & minerals ? B12 - Folate - Ferritin - VitD ?

Reply

Hi Marz,

Thank you for replying to my post.

In October 2017, they tested for anti-TSH receptor antibodies and was positive hence the diagnosis of Graves hyperthyroidism. I don't believe they tested for Hashimotos because my thyroid levels were below the normal range.

I have never had a vitamins and minerals test. Should I have one?

Do you feel pain too?

I look forward to hearing more from you!

SolSun

Reply

hi i was diagnosed with hypothyroidism in 2017 , had severe pain all over tremors sweats pin needles sore heads fatigue tiredness weak . after 9 months my tsh t3 t4 was all normal again . i to was put of all meds , symptoms was very mild when i came of meds ,i was told that they would go away over time . but they have got alot worse my endo discharged me told me i had no problems with my thyroid.so in the end i decided to do blood test for lymes diaease it came back positive,,so waiting for treatment in 6 weeks time or so

Reply

I too have Graves and ongoing pain. Diagnosed with a second episode in September 2016, treated with Carbimazole again and levels normalised by Jan 2018 when I had short period of several weeks feeling quite well. Gradually the pain started to increase again, in all 4 of my limbs, joint, tendon and muscle pains, similar to the myopathy I had when Graves was severe. I also have extreme fatigue, disturbed sleep and low mood at times. Currently wondering if I have fibromyalgia. I am now trying a functional medicine approach with AIP paleo diet and various supplements.

Reply

Hi Jeanie,

I am still in remission and the pain is lessening which is good! I am now seeing a pain consultant who has diagnosed me with Central Sensitivity Syndrome (which includes fibromyalgia) and recommended this website bodyreprogramming.org

I also choose to eat a healthy diet and have a healthy lifestyle despite my endocrinologist saying that the reason why I have Graves’ disease is that I have a genetic predisposition to produce the TSI antibodies.

I also learn on the btf-thyroid.org that Apitope has just completed and reported positive data for the potential first disease-modifying treatment for Graves’ disease (ATX-GD-59) apitope.com/graves-disease/

Take care,

SolSun

Reply

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