Anyone had surgery to remove thyroid due to hyperthyroidism?

Hi, I'm 55 way older than you. I was diagnosed with Hyperthyroidism/Graves August of 2016. I feel a lot better with Methimazole. However, my eyes have been greatly affected. I now have Graves Ophthalmopathy. I can't even consider RAI because it'll make my eyes worse. I'm told my other option is a thyroidectomy and even then I still run a slight risk of my eyes getting worse. I would have to take prednisone two weeks prior surgery and two weeks after surgery. I'm taking all the recommended supplements and following a gluten free diet and my numbers are not really improving-they go up and down. My TSH has remained at .03. My endo says my numbers are moderate and not to expect my condition to get better with supplements or diet. If it weren't for my eyes I would not be considering surgery, but I have to make a decision soon. I want to know how much weight I'll gain (I've always weighed under 120 since I'm only 5'2). Then I have to get orbital decompression of the eyes due to proptosis and eyelid surgery since my eyelids have retracted. If anyone has had a thyroidectomy, please let us know what to expect in terms of weight gain, scarring, etc.

I have Graves, and am hyper a lot. I've been on carbimazole for a year waiting for my levels to balance .

i don't want radioactive iodine either , but I haven't met anyone yet who feels well after having a thyroidectomy .

i feel horrible too so I empathise.

next week I need to decide too......

the balance is in what is worse, hyper symptoms and palpitations v hypo 

I'd be glad of advice too x

Hi, you might get more relevant advice if you mention the underlying cause of your hyperthyroidism. 

Personally for myself when I was diagnosed I absolutely did not want RAI or surgery because I saw too many people who did that who did not feel well on synthetic thyroid replacement (Synthroid), i.e. synthetic T4 and then there was nothing they could do about it because those choices are not reversible. Though I felt better when my excess thyroid hormone was blocked by Methimazole, I really wanted to normalize all my results because my TSH had remained at essentially 0 for two years. So I did some research and found out that carnitine, an amino acid was very important in thyroid patients and that hyperthyroid patients lose this from their muscles thru urination. Also vitamin D was very important.  I got tested for those as well as Magnesium and was deficient or low in all of them so I took these supplements along with Methimazole and my doc was able to lower my dose of Methimazole as all my labs, including TSH improved when I took these. I feel normal unless I am stressed so I am glad I made the choices I did. My Endo was shocked at my results and we wound up working well together in partnership, he taking care of my prescribed meds and me taking care of my supplements which he is not trained in.

I do hear of some patients having the permanent treatments (RAI or surgery) who feel better than they did with runaway hyperthyroid, and some are able to get a hold of more natural thyroid hormone replacement but by far and large I read more from patients who are not happy with the results and how they feel.

I hope those who have had it done will respond to you both those that are happy with their choice and those who are not and you can then better decide when you receive information from those who have made this choice.

 

I didn't have the sugery but did have RAI 1st February.  I very quickly went hypo and am taking 75mg thyroxine.  I still have a way to go but feel pretty good and a whole lot better than I did when Iwas hyper.  I've my second blood test after treatment in two weeks time and am hoping I'm normalising.  Either way I feel better than I have done for years.  Lot's of people have permanent treatment and are fine for the rest of their lives.  Go into it with a positive attitude and make sure you take your supplements and keep yourself healthy with a good diet and you'll be fine.  

Hi guys just thought I'd update and let you all know that I went for the surgery and I'm currently 6 days post op! I was started on levothyroxine the next day and calcium too, although my parathyroids are still intact they're a little bruised I'm told so calcium levels are low. I was really nervous leading up to the op but when the time came I was actually really calm, the worst part for me was the horrendous sore throat from the breathing tube but was told not everyone suffers from that and all depends on how gentle the person is putting it in and how easy it is to put into the patient..I just knew as soon as I was told this that I'd be awkward with it ha! The back of my neck and across my shoulders were quite tender too from the position I was in during surgery and of course the front of my neck was quite sore too, more than I thought after reading other posts but I guess everyone is different. I'm still a little weak but I've managed to get myself out for a bit yesterday and today. I stopped taking pain meds after 2-3 days. I've had a headache for 4 days now which has gotten worse each day but it's finally calming down now after taking some codeine, I try to avoid codeine as much as possible because I don't do well with it so I only took half of one and an ibuprofen. My incision isn't really painful anymore unless it is knocked but it's getting really itchy, good sign of healing! The protective glue stuff is still on there so far but will start to come off eventually! Please feel free to message me if you have any questions

Carleigh x