Total thyroidectomy 6 year's ago and and my bloods are constantly up and down still

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I had a thyroidectomy 6 year's ago due to my levels were massively up and down from week to week and graves.

After I was put on 175 MG thyroxine l felt fine for 4 year's my weight leveled out and my eye swelling from graves went back to normal.

Then 2 years ago I got a migraine that lasted for 3 weeks so after seeing many gps one was concerned and sent me straight to hospital for a head scan and lumbar puncture thankfully it was all fine but whilst there they found my t4 high once again and I had no b12 vitamin and was told that this is what caused migraine

They lowerd my med to 150mg

I have been on 150mg for 2 years now and the my bloods go from rock bottom to sky high again , my graves has returned my weight is up and down 2 stone every 3 weeks I feel shattered constantly all my symptoms from before my thyroidectomy have returned and the GP's don't know what to do.

I feel constantly Please someone help.

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3 Replies

  • Posted

    Hi sorry your not feeling very well. I was also diagnosed with Graves Disease back in 2007 and had radio iodine treatment to kill off the thyroid gland. Still now my thyroid is not under control I have a TSH 33.36 and a Serum free thyroxine 21.5 and no one seems to know what's happening. I feel really ill body hurts especially legs and body tremors a lot also my mind is just not with it. Was told 4 weeks ago to increase my medication to 125 levothyroxine and had a call from dr today to say I have now gone over active and to reduce again to 100. I feel for you have you got any more answers since your post?

    • Posted

      hello , i was sent to a rumatoligist because of all the pain i am in , As my gp told me that it can not be my thyroid as i did not have one (even though my bloods are constantly up and down) but i went and the specialist told me that i have fybromyalgia .

      l before i left i asked her to look at my blood test results over the last 2 years she did and then told me " oh you might not have fybromyalgia it seems there is still a problem with your thyroid "(that i dont have)  

      sent back to gp and now due to see a thyroid specialist in november.

      but all this time i have all of the above symptoms that you describe 

      the gps are of no help as they see my bloods are always wrong but because i no longer have a thyroid they dont know why.

      As i politely said to one the other day "if you had to spend 24hours in my shoes you would soon find the answer"

      i will keep you posted

      i will let you know how i get on in november. 

    • Posted

      Thank you for your reply, I've recently been seen by a endocrinologist 4 weeks ago and was told to increase my medication I was also told that she thinks my symptoms are connected to something else and tested me for early menopause as I'm 39, all came back clear. She said when I left to get results off dr and see her in March next year. The thought of feeling like this for so long really gets me down.

      I really understand how you must be feeling it's so frustrating I hope you get some answers in November, please let me know how you get on.

      Thank you

      Caroline

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