I need some advice, please. I have a TT scheduled in two weeks and I getting nervous and beginning to rethink my decision. A little background on me, I was diagnosed with graves in 2011. It took just over 18 months for the blood results to go into the normal range. Over the years I have been in remission on and off, since 2016 I have had a few stressful life events that have affected my hyperthyroidism requiring me to up my carbimazole meds. Over the past two years, my endocrinologist has begun to talk to me about putting graves behind me by having a TT. She said it is not recommended to be on anti-thyroid meds for too long as it can affect the liver and white blood cells. Also, the meds for replacing the thyroid are more easily absorbed by the body and are safer. Is anyone here happy with TT or any regrets?
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tango_1972
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Tango, You need to speak to PURPLE NAILS whom I hope will see this as she has been on carbimazole for years as she didn't want to have a thyroidectomy and has managed to keep going. From what I have ascertained it would be good if you could get a test to show what your thyroid levels are right now (albeit privately) together with vitamiln test showing Ferritin, Vit B12, Vit D and Folate (Medichecks do one). I had a semi-thyroidectomy years ago and never felt 100% after it but at least was fortunate enough to find a private doctor who realised that I would need T4 and T3 to feel anywhere near well again but obviously had other problems that came into the equation. If you look to the right of your post you will see related posts that others have written on the subject so would advise you to read up on everything before making a decison. Hope this helps.
How well are you currently - are you levels kept stable?
If you feel well now - you can opt to stay on carbimazole longer term. There’s lots a research showing remission still possible. Stopping & starting should be avoided.
I think doctors are sometimes too keen to stop & check for remission because of the suggested time limit set by hospital, rather than what the levels are doing.
I think doctors over emphasise the risk of liver damage & neutropenia (under 1% for both Carbimazole & PTU - antithyroid medications) PTU is harsher on liver.
It’s a random reaction not cumulative damage over time.
A permanent treatment is considered more efficient as doctors view hypothyroid less dangerous. You can feel very unwell with low thyroid but unless exceptionally low for a long time it’s not life threatening.
A GP say hypo is easily treatable with levothyroxine - LT4 but hyper usually has to be monitored by hospital, endocrinologist specialist.
Doctors only offer levothyroxine & although in theory there are alternative if clinically needed, they are virtually prohibited by NHS. Many resort to private options. Most do manage, but some struggle and do not find help they need.
I don’t think LT4 being easily absorbed over carbimazole is a factor. LT4 is a synthetic replacement hormone rather than a drug, but it will have fillers which some react to.
Levothyroxine is a very fussy hormone has to be taken away from food, other medications. Whereas with carbimazole it’s not such an issue.
I was offered radioactive iodine (RAI) for my hyper nodule, I tried to discuss surgery as an option but was shut down so i’m staying on carbimazole.
Usually RAI is first option, is this an unsuitable option?
This forum helps those who struggle with thyroid treatment. Those without issues won’t be here looking for advice.
I have a senior family member. He was diagnosed hyperthyroid - wasn’t ever told the cause, and had surgery within weeks. Didn’t know about antithyroid medication, or about radioactive iodine treatment - he has been on levothyroixine for over 40 years with no issue.
If you do some learning now about the issues which can occur you would be in a good position to prevent them.
First step to prepare is do you monitor your own results? You are legally entitled to your results. Either set up online access to you record & keep copies or obtain a printed copy. Must have lab ranges as ranges vary between labs.
Before surgery ensure you’ve had a full thyroid function. - You need this information as a pre surgery bench mark.
Don’t assume you had a blood test & everything surely would have been tested - often it isn’t. You need to know exactly what’s been tested & results (with that lab range)
You need results for
TSH
FT4
FT3
Antibodies should have been tested when diagnosed, doctors don’t always see benefit of monitoring.
Hello, thanks for your reply. Just a little more background I am 50 and almost officially in menopause. So I have those similar symptoms to deal with. Anxiety, easily stressed, irritability, not sleeping great, tired a lot, Hard to know whats graves and whats menopausal. So thyroid issues are in my family. My maternal grandmother had a goitre, and my sister has graves and had the RAI but then as a result developed TED , has had hashimotos and thyroid storm......she has been through alot. She regrets the RAI and even wondered could it have caused her daughters thyroid cancer. .She has had several surgeries to relieve eyes. So I am just trying to be careful and make the right choice.
So you asked for some blood results.
as of this week TSH 0.0051 in July it was 0.01 and in January it was 0,47
my free T4 was 17.90 in July it was 21.00 and in January it was 13,50
My antibodies for TSH were last tested in May 2021 and it was 4.47
At the moment I am taking two 5 mg in the morning and 5mg in the evening, The extra one in the evening I started again this week.
RAI can worsen or trigger TED. Doctors will say TED can occur before, during or after any form of treatment, but I think RAI is a likely larger factor. RAI isn’t recommended with active TED. If you read my profile you’ll see I don’t have autoimmune, I have a hyper nodule but doctors can’t agree on if I have TED or not? Another reason I’m not keen on RAI.
TSH 0.0051 in July it was 0.01 and in January it was 0.47
All your TSH results are low. This is expected with hyper levels. The complexity arises as often it doesn’t rise in accordance with low level. Mine has never risen into range even with low stable FT4 & FT3. This is a problem for doctors that focus in TSH & deem it to be everything they need to base treatment decisions on.
FT4 was 17.90 - in July it was 21.00 - January it was 13.50
A typical range might be 9-19 or 12-22 so in January it was possibly too low. But by July is was heading too high.
Do you have the exact ranges?
Antibodies for TSH - Was this TRab - TSH receptor antibodies ? - measures stimulating, neural & blocking antibodies.
A results of 4.47 is likely a positive result they normally have a 0-X range or <X limit.
Antibodies can fluctuate & they don’t always correlate to how the symptoms are progressing - the higher the level the more unlikely remission will be maintained.
FT3 hasn’t be tested so we cant tell if your FT3 is high & keeping TSH low or it might be low. Low FT3 would cause hypo symptoms.
When thyroid abnormal it often cause nutrients to be affected, the can cause similar symtoms and worsen thyroid conversion most FT3 is converted from FT4.
If doctors won’t test FT3 & nutrients there is option of private testing.
Here’s a list of companies offering different options, some packages include thyroid function, key nutrients and thyroid Antibodies. Others a basic function only. Some also have discount codes available.
You order test online the kits arrives via post sample taken by finger prick (extra fee for private venous draw). Post back and results available online quite quickly.
Is that something you think you could manage?
Carbimazole pills do come in 10mg, (& 15, 20) but no reason to switch if happy to take 2, they would be smaller pills.
Over 30mg carbimazole is considered a high dose for longer term. Some start on much higher eg 60mg. Usually levels do settle and you can reduce dose.
Sounds like a horror story what happened to your sister. Is she & her daughter well now, are both their hypothyroidism well treated now?
I had thyrotoxicosis and then Graves disease during and throughout my 20's. I was on carbimazole the whole time from age 21 to age 28. Carbimazole is safer than PTU. I also believe that carbimazole is the safer option instead of RAI ( my great aunt had it and she had terrible issues afterwards such as going blind , digestive problems, other eye issues. ) and surgery. I refused point blank the RAI , and I was offered it again in my 50 's and again I made my point that 10 years after having RAI the quality of life reduces significantly. I said in no way would I even entertain RAI.
I discussed surgery with my consultant and he was not happy to pursue that option ; Because there are issues such as hypoparathyroidism after surgery - this is because during surgery the surgeon cannot guarantee the parathyroids won't be taken out or damaged or have trauma ! I have now got an atrophied thyroid gland and im now hypothyroid with active Graves antibodies. Hypothyroidism is not easy to treat as doctors make out !! For most people it can be easier , however , there are some people like me who do not tolerate levothyroxine nor are they well on levothyroxine so the next step is to fight through the red tape to get liothyronine (T3) prescribed - but the ICB 's and doctors and hospitals make you jump through hoops to get it prescribed for you. It took me 4 years to get mine. :/ I have a fault in my DI01 & DI02 genes which means no matter how high my levothyroxine dose is I would never be well. I have clinical need for liothyronine so I can now get it, but this was only possible because my consultant was able to prescribe it at the time. I wish you the very best of care and I hope your consultant listens to you and allows you more time on carbimazole before you make your final decision about how you'd like your thyroid disease treated. Hang in there. If you're not happy, stay with what you feel well with. Good luck 👍
I just wanted to add as purplenails mentioned RAI, people who take RAI often regret it (me being one) I have heard of far more success stories from having a TT. Which I had gone down the TT route.
I am sorry to say that my thyroidectomy is my biggest regret, so do think hard before agreeing to it. At the very least you must extract an agreement from your endocrinologist that he will organise for you to be given Levothyroxine and Liothyronine together, if, after a while of having Levothyroxine alone, your blood tests show that you are not converting T4 into T3 at a level that keeps you feeling well. I suffered many years of feeling unwell, until a client told me about Liothyronine. I had no idea it existed. No doctor had ever mentioned it. I immediately went to an endocrinologist privately and managed to get my first ever prescription of this valuable little pill. I felt better within weeks but still had to fine tune the dose, which took some time.
In those days, all I had to do was ask my GP to prescribe it and she agreed. It is not as easy now, which is why you must have an agreement in writing before you agree to the operation.
I think you may get different responses from people who convert well and have never needed T3. They do exist and your endocrinologist will probably look surprised when you mention your possible need of it. Just know that it is available if you should find that your blood tests show that you need it. Always ask for a copy of all blood tests. High T4, almost over range and T3 below range was how mine presented, showing poor conversion of T4. The fact that you will have no thyroid is reason enough to ask for a prescription of T3. I do hope this helps.
I had a TT 26 years ago because I had a cancerous growth in my thyroid. I don't regret it, because it had to be done, but if it can be avoided at all, then that's what I would do. I would also avoid RAI because I know of a number of people who have died of throat cancer and RAI triggered it.
Hello there, I have graves disease, diagnosed in 2018.I first went on carbimazole only and then block and replace( carbimazole and levothyroxine).I tried for remission once but relapsed badly within 2 weeks(my T4 went back up onto the 60's).I had a total thyroidectomy in June this year and I have no regrets at all.I was suffering weekly migraines at one point and had one where I thought I was having a stroke.I had just had enough of feeling awful.My levels were difficult to stabilise .After alot of soul searching and research I decided to ask for a thyroidectomy and was on the waiting list for a year.I have thyroid eye disease so I knew I couldn't have RAI.That had also become active again.Even if I didn't have TED I would have asked for surgery over RAI.My best advice is to have a good think about it so you can make an informed decision with no regrets.Look at all your options to see if it's right for you.The operation itself wasn't bad and it's not a magic bullet to get rid of all your problems.You will still have Graves but for me the racing heart, migraines, repetative thoughts, internal shaking etc have gone.If you would care to look at my whole journey I have kept my profile updated and you can read it if you click on the picture at the side of my name.Best wishes to you.
Every experience is different as no 2 people are the same on any treatment or medication. Talk to your surgeon about success rates etc. Way up pros and cons. I was same as you with Graves very up and down on carbimozole despite good endo and regular gp checks . Had terrible time forv4 years terrible weight loss looked and felt exhausted most of the time. I had total thyroidectomy in July this year and don't regret it. Never felt better for years. Started doing couch to 5k 4 weeks ago as I now have better energy levels . It's early days but no regrets wish I had done it sooner
I strongly suggest doing every lifestyle intervention possible before letting them remove an organ xxx
I think the issue is more one of the lack of knowledge in treating thyroid health issues and the fact that doctor 's in primary care are also limited in what blood tests can be run, and limited to only being able to prescribe 1 of the 3 potential treatment options which were all widely prescribed in primary care up until around 20 years ago.
Many forums members, are on here and seeking help as, even when referred back to an endocrinologist to be considered for other treatment options find they are up against a brick wall and refused both T3 - Liothyronine and / or Natural Desiccated Thyroid through the NHS.
Some of us then look to go private - Thyroid UK - the charity who supports this forum holds a list of patient - to patient recommended specialists and doctors - thyroiduk.org -
Those you can't afford to go private consider self medicating and buying their own thyroid hormone replacement through the ' net ' and yes, it 's not a nice idea but when push comes to shove - all we all want is to have our health and well being restored and carry on with our lives.
Graves is an auto immune Disease that runs it's own course, there is no cure and at the end of day believe it all comes down to the degree of the inconvenience caused and how well the AT drug is tolerated.
Switching a patient from hyper to hypo because of an AI disease, which you will still have, just removes you from the O/P waiting list back out into primary care where it is believed treatment for primary hypothyroidism is better managed.
There are many forum members on here who have been on a small dose of AT medication for very many years and when life stressors occur, simply treat themselves as and when to offset symptoms as Graves is known to be a stress and anxiety driven AI disease.
All I can do is suggest you read around what we now know :
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
The body runs on T3 not T4 - your body needs to be able to convert the T4 into T3 - and T3 is said to be around 4 x more powerful than T4.
Some people can get by on T4 only - Thyroxine.
Some people find that T4 - seems to stop working for them at some point in time and find the addition of a little T3 - probably to replace that little bit lost when the thyroid was removed - solves the problem and their health is restored :
Some people can't tolerate T4 and need to take T3 only - Liothyronine.
Whilst others find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland, and derived from pig thyroid dried and ground down into tablet, referred to as grains and the original treatment for hypothyroidism and used successfully for over 100 years and long before the science of blood tests, ranges and guidelines.
Personally adding back in a little T3 - making up for that little bit lost when my thyroid fully gave up the ghost - was like my pilot light having been repaired and functioning again.
Once a Graves patient - always a Graves patient and in my experience mainstream medicine do not have an answer for Graves Disease that totally resolves one's health and you may find your blood test results never sit where your doctor expects them to be and to be well you do need to become your own best advocate.
I'm with Graves post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease - caused by the RAI ( amongst other things ) - and hypothyroidism and self medicating with Natural Desiccated Thyroid and am much improved.
I've had my TT done when I was only 23 years old (2008) and I can say that I've never been better. Prior to TT, my health was downhill spiral. Getting infections left and right. I'm sick of getting sick for 7 years. The only problem I have now is maintaining my weight and having severe lack of energy for most days. Though I'm on levo I take thyroid pill to supplement my lack of energy. Believe me when I say I cannot last strolling at malls for an hour as I'd feel that I've been up the hill already. Oh before I forget, I can still vividly remember the what the nurses told me 24hrs before my surgery, that if I proceed with the TT surgery, I'll regret it for the rest of my life as I will be sooooo forgetful, and awfully, they are so right! Brain fog is my worst enemy too!
i have been on off carbimazole for 10 years , finally had to go for RAI due to enlargement of thyroid , worst decision of my life ever , as after complete RAI , thyroxine was never effective in doses of 200 or even 300 mcg coz of the internal resistance to t4 hence we get graves disease , my life has never been the same as was before RAI , its been 5 years since my RAI can't adjust the dose of thyroxine now on 400 mcg of thyroxine coz of severe resistance in conversion of t4 to t3 as on all graves patient . Even t3 at doses of 60 mg was not good , had the best of me when I crossed t3 beyond 100 mg
Anyhow every one should take the opinion of the people but do get a wise decision in the end.
I was also diagnosed with Graves in 2012, but it would not be contained with meds, so my consultant offered me Radio active iodine. I had the mid dose - isolating for 14 days at home - and touch wood have been stable ever since on 100/125 Levo on alternate days.
I have to admit that I also regret it, I had it done aged 20, I was diagnosed with Graves at 16. If I knew then what I knew now I would not have let the surgeons do it, but I was young and we didn't have the internet back then for research. I was actually fine for a long time, but the last ten years have been very difficult and I think it is a combination of the menopause and not having a thyroid. Personally I would try life style interventions now if I could.
So true! In my situation they told me thyroid cancer is the easiest! The surgery wasn't my issue, finding the correct thyroid meds to feel well afterwards was a nightmare. They tell you all you have to do is pop a pill....no! Not so easy for so many of us. Be prepared to advocate for yourself because no one else will.
I've been on and off Carbimazole for 10+ years. 3 relapses in that time. I refuse TT. I saw Professor Toft and use his paper as my justification. I am so much better since I sorted out my VitD and B12.
I am currently on a very small Carbimazole dose, and get my bloods checked 2x a year, privately. I have no faith in faith in the NHS endocrinologists I've seen, they really don't seem to know much about Graves Disease.
It does depend if Carbimazole works for you, friend had Graves but TT was her only option.
The pertinent point - “I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine-131 or surgery in patients with Graves’ disease, irrespective of age or number of recurrences of hyperthyroidism.”
Hi, I had a subtotal thyroidectomy in 1995 due to Graves’ disease. I was on Carbimazole for 2 years and was ok but when I came off them I relapsed. I didn’t want RAI as I was of child bearing age so opted for surgery. I just wanted to be better and get on with my life and I have been fine from my thyroid aspect since. I don’t regret having the operation it was the right decision for me.
I removed it and will never forgive myself for listening to doctors. It’s not as easy as they say to get on a right dose because your body needs thyroid to work and your body needs different amount depending on activities, weather, mood, etc and that changes on hourly bases. It is hard to get on a right dose because dose should be different based on needs, so it’s just not possible. Everything in our body runs on thyroid produced hormones so if that is not balanced then nothing will work properly, and will cause other problems. Think hard and do it only if absolutely necessary—again this is the most important organ that regulates everything else. Good luck!!!
To be honest, I regret it every single day. Even though I'm doing better than I have been for the last 3 years now that I'm on a different form of thyroid hormone replacement than I was initially given, it's still hard and I'm not sure how to forgive myself for being so naive.
Life is happier now than it has been in a while - I've finished university, gotten my first 'real' job, have a caring boyfriend and have moved out of my family home, but since the thyroidectomy, I always feel like something is missing. I don't mean to suggest that TT won't be the right decision for you as it is for a lot of people, but please let it be a decision that you make, and not one that you take lightly at all. My experience was that doctors severely downplayed the seriousness of a TT and oversimplified the role of the thyroid, so I really believed that my thyroid was the 'enemy' and all my problems would go away if I got rid of it.
Also, I think one of the hardest parts of living without a thyroid is the lack of support (outside of forums like these). I don't feel that my life matters to any of my doctors anymore. In fact, I don't even have any of the same doctors that I did before the operation (GPs included) as I was immediately discharged from their care straight after the operation. I have had to fight very hard for the ones that I do have now. Even still, they act as though I'm a burden or a waste of their time. The change from being 'cared about' while I had active Graves', to suddenly being blamed for taking time away from other, "more deserving" patients for still wanting to be listened to when symptomatic post-TT is something I never would have factored into my decision.
My experience has been that, if one does have feelings of regret post-TT, no one (in a medical setting/capacity) is there to help support them through these feelings, or even to help support them through the ordeal of living/having lived through serious autoimmune disease in the first place. No one offers or suggests that mental health support could be needed or beneficial to guide one through the permanence of their decision, to acknowledge the possibility that it may not make this person feel 'just like everyone else' afterwards. The mental toll is very significant for some, and I wholeheartedly feel that this is largely ignored or forgotten when doctors suggest RAI or thyroidectomy. I'm not saying it should never be suggested, but that often, there are more factors to be considered than those which you will likely hear in the doctor's office.
feel so touched by your story, so glad that you’ve gotten some peace now, no doubt through your own grit and research. There are so many people that have been failed 💔
Hi Tango. I haven't had a TT as I'm a hypo so forgive me for adding to the debate, but I'm thinking if you're not sure about surgery you should delay the decision and maybe get a second (medical) opinion if possible, particularly about any problems with just staying on medication for an extended period. Although the replies here are mostly about the TT, maybe you also need to hear from those that haven't had it and stayed on the medication. I think maybe the Dr is scaring you into having the surgery and you need more info before agreeing? I apologise if my understanding, or lack of, Graves disease makes my answer irrelevant but I can tell from your post that you are very wary and instinct is warning you off it, and that's not a good way to agree to surgery.
Hi Tango. I I hope you are well. I was wondering, as others might also be, what you've decided to do about the scheduled TT.? Do you have any update for us?
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Good luck 👍 
Total thyroidectomy 5 days ago 👍
Thyroidectomy Feb 2020
Post total thyroidectomy
Total thyroidectomy 
My WBC is low due to Carbimazole and my Endo suggests Thyroidectomy if no improvement, any advice?
