Graves disease questions

[Santos82]

In February 2019, I discovered I have Hyperthyroidism, Graves Disease. I used to feel stressed, fast hear beat, I lost weight, high blook pressure. Test results attached.

Started taking Thyrozol 10mg 3 times per day plus Propranolol 10mg one per day.

The doctor recommended me to remove my Thyroid at anytime soon.

I searched for another doctor, she was against removing my Thyroid as I can be in remission phase after sometime (probability 40%). I did not remove the Thyroid. She suggested taking only one pill per day for Thyrozol.

Then I became Hypo since I was still in medication. I was feeling very tired and with brain fog. The Dr told me to stop taking Thyrozol and to do monthly blood tests.

My eyes shape changed suddenly in September 2019, then I discovered that I have TED. Went to the eyes doctor. I did many eye imaging exams. I was injected steroid in one eye, but it did not improve nor did it get worse. Then he said I need to manage my TSH levels.

After being stable with my TSH, T3, T4 levels, the doctor told me that I am in remission. Need to do blood tests every 6 months. If things get out of control, I will need to remove my thyroid. Till now as you can see in the attached results, I am stable.

I need advice if there is a high probability that I will remain in remission.

If I will not be in remission and go back to previous stages with the bad symptoms, should I remove my Thyroid or should I go back to medications to try to reach remission again.

If I remove Thyroid, this does not mean I will stop having graves disease.

What about TED, if I fix my eyes today, will the eyes also get bulge if I get back to the TSH fluctuation and become Hyper or Hypo? TED and Graves disease are 2 different cases. So it is somehow confusing.

Is there prove that Covid-19 is fatal for Graves Disease patients?

[Hennerton]

Definitely do not have your thyroid removed unless it becomes absolutely necessary. So far you are doing well and may go into remission again and maybe even have to try a third time. All this is better than losing your thyroid. I have been through Graves and because I had a useless endocrinologist and did not know enough about it, I had a thyroidectomy. It is my greatest regret. At least the Graves then calmed down and my eyes, that were mild in terms of thyroid eye disease, stayed much the same. That is the only blessing. My antibodies returned to normal, so in effect Graves did not linger.

I am sure others will come along with advice but I wish you well and at least you have this fantastic site to help you. I did not know about it when I was trying to reach a decision and maybe it did not exist anyway in 2005?

[asiatic]

I don't think anyone can tell if you will remain in remission. The fact that your antibodies were never very high and that you responded quickly to ATM treatment I would consider a good sign. If Graves did return probably a short course would again put you in remission and personally I would not consider a TT. Usually TED means you have some blocking antibodies so watch out for going hypo.

[ling]

What did u mean by this?

"If I remove Thyroid, this does not mean I will stop having graves disease."

Re TED. If I remember correctly, the bulging eyes are a specific symptom of Graves TED. If your Graves is under control, including TRAb antibodies, this particular symptom should not recur.

Once u have TED though, your eyes may act up if you get hypo. Just having a high or higher TSH level, with normal FT4 FT3 levels, can affect the eyes, not with Graves hyper symptoms, but with symptoms associated with being hypo, depending on the individual.

[skifreedom]

I have Graves too. It's because the thyroid is actually the victim here - the antibodies attack the thyroid, causing it go hyper. So just because there is no thyroid for them to attack doesn't mean they just necessarily disappear.

For what it's worth, I'd try and hang onto your thyroid as well if you possibly can as it controls a lot of your hormones and is hard to replicate artificially.

[MissingThyroidMum]

I had my thyroid removed too and had quite severe TED which I ended up at moorfields eye hospital having to have orbital decompression and upper and lower lid retraction on both eyes. If only I had known more when I had my thyroid removed and had sites like this as I totally regret letting them remove it... IF jt gets so bad they say they have no other option at least try and only let them do a partial removal as once it’s all gone there’s no going back. As skifreedom put it helped a bit but in other ways it’s made things much worse for me 😕

Good luck and look into ways to reduce stress and manage the disease in a more wholistic way