Hi there, I would really appreciate some advice from anyone that has had Graves disease/hyperthyroidism and had a total Thyroidectomy. I tried RAI back in Sept 2021 but it was unsuccessful and then caused TED.
Diagnosed with Graves disease in Sept 2018 and have been taking Carbimazole ever since. My Endo suggests avoiding surgery for a couple of years and revisiting if there is still the need. However, Surgeon advises total Thyroidectomy as says that you shouldn't stay on carbimazole for more than 2 years (its a nasty drug according to him) and I have been taking it for 4 years and thyroid is still very overactive hence RAI not working.
I have been over medicated a couple of times causing hypothyroidism for short spells and felt very depressed and upset hence being worried about becoming underactive from thyroid removal.
If anyone has had surgery, did you gain alot of weight/feel depressed and would you say it was worth it? Don't want to replace one disease with another if its likely to be worse.
Surgery scheduled for 21st Feb (3 weeks time!) and having cold feet so any advice would be greatly appreciated.
Thank you!
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Clairem147
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Graves is an auto immune disease - there is no cure - but by having either RAI or a thyroidectomy the gland either gets burnt out in situ and ultimately becomes non functioning - or totally removed by surgery - which is a cleaner and a more precise option.
You will be primary hypothyroid which ever treatment you have and still have Graves but the symptoms will not be seen as life threatening and the belief is this primary hypothyroidism is better managed in primary care by your doctor.
I have Graves and had RAI thyroid ablation in 2005 and I don't believe there is a simply ' fix ' nor a little pill that sorts everything out afterwards.
I read that the dose of RAI is not as accurate as you might think and that it can cause increased antibodies and Graves activity and I am sorry this treatment seems not to have worked the first time and read that generally a second dose is then administered.
RAI slowly works by disabling the thyroid in situ - though is a toxic substance and taken up to a lesser extent by other glands and organs within the body. I too experienced TED after RAI thyroid ablation - it is a quite common side effect though again, never discussed with me before hand and I was offered no help dealing with this disfigurement which I found deeply distressing.
I now self medicate and my eye issues have much improved now my T3 level is optimal.
I deeply regret having had RAI thyroid ablation but knew nothing back in 2004 and simply believed all I was told - had I had an option I would have stayed on the AT drug - it's no nastier than another drug - and likely the better option going by the latest research.
The most recent research is suggesting the longer the patient stays on the AT drug the better the option for the patient :
There are low risk with carbimazole which doesn’t disappear while taking the medication but the risk tends to be over emphasised by doctors who are following policy to manage everyone in an efficient path.
Doctors view treating hypothyroidism easy, once no longer at risk of hyper, specialists can pass managing replace to primary care.
Most are well after surgery but a significant percentage are not improved. The testing is based on TSH results which don’t always reflect thyroid level.
Replacement hormone (Levothyroxine - LT4) is standard treatment & some do not convert well to T3 which is the active hormone.
I’ve taken carbimazole for over 4 years and others have taken for decades. What dose of carbimazole do you take & do you track results? Recommend you do to ensure your levels aren’t too low or remaining too high. Is it you are still hyper with high FT4 & FT3 or is that your TSH is low?
RAI can continue to reduce thyroid function beyond 6 month, although it’s thought most (two thirds) are hypothyroid within 6 month. 10% do required have further treatment. For full thyroid assessment you need results & ranges for:
TSH
FT4
FT3
Also important to test Folate, ferritin, B12 & vitamin D.
What thyroid antibodies have shown been tested?
Hi Claire, I have Graves and I have had a total thyroidectomy. I was on Carbimazole for 2-3 years and I felt awful, I was advised that Carbimazole was not a long term solution and was told there was an osteporosis risk (advice received on this forum said this is not accurate). I had the thyroidectomy rather than RAI (I have Graves ophthalmology so RAI was not suitable and also I had family reasons why I wanted to avoid it). The surgery was fine. Not as painful as I thought. I had a small cancer found by pathology and so I was relieved that I had the surgery. My weight ballooned before the surgery when I was on Carbimazle mostly because I felt exhausted all the time to the extent I could hardly get off the couch some days. I had hoped surgery would improve that but it hasn't. I have started to get a wee bit energy since improving my vitamin supplements. Nothing dramatic but I am keen to keep progressing. I have not experienced depression since the surgery.
Hi. I had surgery 6 weeks ago. I had aggressive Graves’ disease. It took me 30 months to decide to go to surgery. I tried PTU and could never find balance in my numbers and also I was worn down by the psychological and physical symptoms that I decided on surgery. I do not regret my decision. My voice is not 100-%. I am having a few teething troubles post surgery but nothing major. I have not gained any weight post surgery. I sleep better. I am calmer as a person. I was never going to get my graves under control with medication so surgery was the right choice. No regrets. Ask me any questions it’s no problem. I did Lugols iodine 12 days before surgery to bring down the size of my thyroid. This makes the thyroid less vascular and more or a solid structure to remove. I had a drain in my neck for 5 days post surgery.
Hi, I had very over active thyroid symptoms after the birth of my first son. By the time it was diagnosed my son was 6 mobths old and I was very unwell. Sent to see Endo, was on the carbimazole, valium and something else whichbI cant remember from GP to slow everything down, appointment was New Years Eve 1986. My weight increased on these meds thankfully as I was about 6 stone by this time.. Thyroidectomy was done May 1987 but I was given no information about what I had wrong with me or going forward, what I would need. It has taken until I found this forum to understand I had Graves disease and how to look after myself regarding vitamins, timing of blood tests etc. . The operation itself is fine, I was in hospital for 5 days, had a drain in my neck for 4 days and staples taken out before I came home. With the help of this forum you will learn about the disease and that knowledge is a great thing. I couldnt have carried on taking the carbimazole etc.. as I needed a more permanent solution and found the thyroidectomy a quick fix for all my symptoms. Of course, you have different symptoms after the operation and its a bit of a juggling act finding the correct dose of thyroid meds that is right for you so that you feel well. I wish you luck and good health.
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