I've been diagnosed with Grave's Disease and quite severe thyroid eye disease since May 2018. I was put on meds on a block-and-replace regimen for my Hyperthyroidism. My Endo has recommended a thyroidectomy since my case was severe and believes chances are low that it will go into remission if I stopped meds and also considering I want to try for a baby soon. I am abit spooked by the idea of possibly having a surgery so soon as I have read online that some people have dealt with Grave's or other thyroid issues for many years before removing their thyroids.
Has anybody had a thyroidectomy within 2 yrs of diagnosis like myself and did you try the option of going off meds first before opting surgery?
Would love to hear your stories/advice/opinions
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My friend had RAI within 6 months of diagnosis as she was allergic to carbimazole. I had 2 tries at remission over 5 years and neither worked. Neither of us had TED. I think you need to consider this as a big factor. How is it likely to progress under either situation. TED is not controlled by the thyroid.
With regards to TED, I have had a total thyroidectomy, Graves with TED, It only affected one eye I called it my popeye, my eye was light sensitive & bright light actually hurt, double vision, I had to see the specialist at the hospital regularly for check ups. After the operation to remove my thyroid gland, my eye did improve a lot & the pain went away & not as sensitive to light & it nearly looked normal but this last few months my eye has begun to pop again, some light sensitivity & it aches not painful but a nagging ache. I have been a little bemused as I thought at first could it be my thyroid had they not got it all but the surgeon said they had removed it completely so then I wondered if it was eye strain because I do use my iPad a lot & do crosswords in bed to help me sleep. I had been under the impression that once my thyroid was removed my eye would be okay. Your last comment TED is not controlled by the thyroid has got me intrigued. Could to please give me more information, I would be so grateful.
My understanding is that TED is a result of the graves antibodies not as a result of thyroid hormones. The tissue around the eyes is similar to thyroid tissue so the antibodies affect that as they do similar the similar thyroid tissue. Removing the thyroid stops the graves antibodies affecting the thyroid. But the graves antibodies can still affect the eye tissue.
Although Graves' disease and Graves' eye disease both stem from the immune system’s attack on healthy tissue, one disease does not directly cause the other. That’s why treatment of the thyroid gland, while important, does not improve the eye disease. The two diseases run their separate courses and do not necessarily occur at the same time.
I have been suffering with Graves' for about 12 years and would never consider having my thyroid removed. When I was first diagnosed the Consultant Endo (a stupid man imho) suggested treating my illness with PTU or removing my thyroid. I decided to take PTU and even then he let my TSH get to 9 so I was bed bound and very ill. I think if you do have it removed you will be jumping from the frying pan into the fire. Doctors in the UK do not seem to know how to treat thyroid disease and you will probably have to pay for private blood tests yourself because even after all this time my doctor goes by the TSH and won't test the T4 or T3. When I was admitted to hospital after I collapsed with a suspected heart attack (which I think was a thyroid storm) A & E only tested the TSH and nothing else. They didn't check my antibodies which are very high at 4000 because they don't think they mean anything and they didn't check my T4 or T3 which I think were probably too high. My TSH came back at 0.54 and according to the Doctor in range. With a TSH of 0.54 I was shaking sweating and my heart rate was over 112 bpm. If you do go ahead with having your thyroid removed get ready for a life of struggling to maintain your health. Doctors will give you just T4 which is levothyroxine when you probably need T3 as wellwhich the NHS are trying to stop prescribing because of cost. I despair the way we are treated by the NHS and I don't see any improvement in the near future. Read my story and then decide what you think is the right thing to do because the last thing you should do is have this operation in my honest opinion.
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