evening iv been offered to have a full thyroidectomy but at my decision, im in limbo about this 1 minute im thinking yes and the next no, just wondering if anyone who has had a thyroidectomy just there thoughts on this with life after, have you been feeling better or worse obviously all we all wont is to feel ourselves but iv been on carbimazole for the last 2 years and feel like i dont even know myself anymore
deciding whether to have a full thyroidectomy - Thyroid UK
deciding whether to have a full thyroidectomy
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hellothere74
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Presumably, you've been diagnosed with Grave's. But, how was that diagnosed? Did they do antibody testing? If so, which one? The first step is to make sure you actually have the disease.
hello im not sure about graves i do know that iv been treated for hyperthyroidism, i have had some to do with trab is it
That's right, TRAB. Was that positive, do you know?
yes that was positive
Then you do have Grave's. I'm afraid I can't help you with your decision, as I have Hashi's, but I would advise you, should you go ahead and have it, to make sure in advance what your treatment would be after the op, when you are hypo. Will they just dose by the TSH or give you full thyroid testing: TSH, FT4, FT3? Will they prescribe T3 if necessary? Probably best to get the responses in writing, too!
ok thank you for the help,,i wish u all the best thanks again
Sorry would it be the doctors who will deal with the aftercare
I imagine it would be the same doctors you're working with now. But, I've never done it, so I can't really say.
Ok thank u for your time
You're welcome. 
Have known other people who have had partial thyroidectomy, and many say it is better to keep part of the thyroid. If you have not had cancer, then there may be an option. Laser surgery recovery time is better. if you can ask for a cosmetic surgeon this might be an option with your thyroid. if you have not had much information, then may be you can ask your care team. what options you have. Radio active iodine is used for older patients. You can raise your iodine levels in your diet, and it might help reduce the size of thyroid. Many will say this is nonsense, but thyroid hormone is iodine converted in the thyroid, to produce thyroid hormone. If you cannot convert the hormone from iodine, with damage to thyroid, then may be a partial thyroidectomy with thyroid hormone will be advised. If you have not had
an ultrasound, then this might be helpful. I had one and was told I had at least 8 enlarged nodules. I went on a diet increasing iodine through fish, fish paste dairy, meat, and one side of thyroid has gone down. I went on a diet, cutting down carbs and hidden sugars and finally
went almost grain free, dairy and egg, using lactose free milk. Low lactose cheese such as cheddar, cutting out yoghurts and soft cheeses even cottage cheese. Ask for all the options before coming to a decision. No need to reply.
hellothere74 in reply to
Thank you
mrtodd in reply to
Hugely interesting reply hope its ok but have PM'd you
I had a partial op in my teens and was fine for around 30 years but Graves came back with a vengeance so had to have RAI, at least with a TT its over and done with, my sister had a TT and hasn't had any problems since .
I had a total thyroidectomy a few years ago due to Graves’ disease. Carbimazole affected my liver & the Endo said she wasn’t happy to put me on any other treatment & surgery was my only option. Ask about treatment post surgery-I was given levothyroxine initially but didn’t convert well & the endo then gave me Liothyronine (which is more expensive but was better for me.
Read lots on here, learn about other supplements which really help post surgery
I personally would not want my thyroid removed because I don't think Doctors know how to treat people without a thyroid. I know lots of people who are struggling to get the right treatment from their Doctor and feel very unwell because they have more or less been left to get on with it. Two years is not a long time to be on the drugs and I know people who have been on them for 10 years and are managing their condition. Have you tried for remission yet? I have had two remissions and I am now on my second and I am glad I decided against having my thyroid removed even though my Doctor pushed me to do it.
I do struggle on carbomzole and feel like even when my levels are in rang I still ach have cramps mood swings can be tearfull and just generally feel unwell I tried to go into remission once but went straight back to hyper, iv mentioned about tryin again but endo sed I'd have to stay an carbomzole for another 12 month b4 we try again,
Can you post your blood results so we can see what the levels are?
I was trying to sort this out yeasterday, asking why on any letter or doctors I'm not getting any test results and my endo sed he will start to send them , I have one letter with results bit that is bk from October 2019
You are entitled to see all your medical records and results because it is the law.
england.nhs.uk/contact-us/h...
I set up a onlin thing also hoping that I could see my medical records but it only shows one test result from back in 2018
I have looked as far back as 10 years so you might have to request copies from the Practice Manager in writing.
Ok thank you for you advise
in reply to Lora7again
Yes I had to pay for back notes, but you can get them for free within 3 weeks of return of test results. The surgery is not keen on phoning people to tell them their test results are back, if they think they are normal, so you may miss the free notes print out by practice manager. When I had the test results back vitamin D and iron and ferritin levels were not supplied. Vitamin D deficiency may be linked to low iron, and is a side effect of thyroid illness and drugs which can lower vitamin levels. To detoxify the liver, high doses of vitamin c 1000mg a day can help detoxify and help the thyroid and adrenal glands.
It sounds a bit like you may have been messed about by doctors and possibly never been on the correct dose for you.
It is well worth becoming knowledgeable yourself, learning to read your blood tests so you can monitor yourself and make your own dosage decisions. You may find it's much easier to get stable that way.
Mood swings depression and anxiety can be part of the hyperactive thyroid condition. it may also make you unable to sleep at night. You might get sweats with bowel trouble. These may be side effects to the drug. I think you should go back to the doctor about this.
I would ask for a full range of tests including vitamin d and zin iron levels B12,as all these can make you feel worse on top of the thyroid problem,
hellothere74 in reply to
Ever since I started carbomzole iv been telling my endo that I'm still suffering and he says that my levels are in rang so I was questioning him could it be the carbomzole side effects and he just always repliy saying that he has never heard of anyone else suffering with these symptons from carbomzole but thank you I will dig deeper into it
in reply to hellothere74
You can check the side effects Carbimazole on the uk -
yellow card.mrha.gov.uk
This is a report scheme but you find the drug profile analysis tab and alphabetical index, find the drug and you don't have to fill in any personal information. It might be scary, when you see the side effects of this drug. the alternative is propylthiouracil. Carbimazole can cause pancreatitis.
Hi Hellothere74,
If you have the option for a partial thyroidectomy I would go for that myself.
I had a total thyroidectomy that went awry, my parathyroid glands got knocked out in the op, and so now I have to take replacement calcium & vitamin D every day, as the parathyroid glands (sited within the main thyroid tissue) regulate calcium in the body.
No one told me there was the possibility of that happening with a total thyroidectomy.
Hindsight is a great thing!
I had a total thyrodectomy 6 months ago and have no regrets. I had graves for 4 years and thyrotosis twice . I was always hot, had palpitations, joint pains, mood swing and diorehea all the time. I also had Ted's and had to be treated with steroid infusionand radiotherapy as it was so bad. At a point I could not get out of bed for months. It all depends on the individual. I have a better quality of life. The effects of carbimizole can be life threatening. Good luck
Thank you and I'm glad you are feeling much better , on words and upwards hay all the best to you
Best of luck
The main problem with treatment/replacement of what the thyroid did is that t4 only medication is only part of it - I know people without a thyroid who are very well who take NDT and know c people who take t4 only who never feel right.
I would highly recommend reading dr Amy Myers books and her story before contemplating a thyroidectomy.
Iwas told i needed an op but asked what was the alternative spoke at length with new endo and was offered radio active iodine and took that offer and have been very satisfied with the outcome. Just thought i would share my outcome
Hi hellothere74
I had my thiyroid removed in May last year I had no choice as my symptoms were out of control I couldnt take the anti thiyroid meds as I had a bad reaction to them.. I would say it depends on how you feel in your self are you hypo or hyper? Do you have graves? My symptoms were so bad I went in to thyroid storm my thyroid was toxic no saving it.. I will say most of my bad symptoms ebed when my thyroid was removed and I did feel much better but I'm having trouble with thyroxine at the moment as I'm crap with synthetic meds.. What's your symptoms if any and why do they want to remove your thyroid?, ❤️
Hi again
I pushed for an uptake scan which confrmed graves along with raised anti body's.. I have just been reading an artical on line about radioactive iodine treatment think it was in some paper on line about hyperthyroidism,, ❤️
I can't tell you what is right for you, we are all different, I can only tell you what happened to me. I was diagnosed with Graves in 2009. I was very thyrotoxic and felt like I was dying. I was twice told during treatment that I would have to have a thyroidectomy/ RAI but I am stubborn and was adamant that I could keep my thyroid - after all, it's not the thyroid that is the problem but the antibodies. I could not face being on Thyroxine for the rest of my life.
I have been in remission and drug-free for three years now and finally I feel like my old self again. I did a lot of research and everything I could to heal my immune system including supplements, eating as well as I was able to, homeopathy, autogenics, massage, sleep and masses of patience, which is hard when you feel so ill. Carbimazole adjustments need to be slight and slow as your body's response is not immediate - I reduced my dose by very small increments over months, eventually taking 0.25mg every third day until stopping completely. I came off too early and had to go back on again; despite these setbacks I stuck to my guns. I also had a great consultant (a woman) with no ego who was led by what I wanted to do and facilitated instead of dictating. When she discharged me she said, 'Congratulations, you have healed yourself'.
Two years into Graves may seem like a lifetime but it is relatively short in terms of the diseases progression. Whatever you decide to do, the very best of luck!
Having a thyroidectomy isn't something you should do without first getting all the information you need and truly understanding what it means to be permanently hypo. You must understand your labs and condition.
When I was told I have thyroid cancer I panicked instead of putting myself on pause for a few minutes and relaxed and spent sometime just reading up on my diagnoises and asked my Endo the important questions like "what treatment options I could have after thyroidectomy and what lab testing will you provide and how often" .
Instead I jumped head first into thyroidectomy and spent the past 3 yrs and trying to get my health back.
Having thyroid problems is nothing to take lightly but losing your thyroid is a battle and not easy for most people. Good luck
thank you all some great advice here and information, sending love to you all and best wishes thanks again
Hello there - hellothere74
Graves is an autoimmune disease and as such it is for life. It is in your blood, and in your DNA and I read it can be triggered by an unexpected shock to the system, like a car accident or a sudden unexpected death within your family or group of friends.
The thyroid is the victim is all this and not the cause - the cause is your own immune system mistakenly attacking your body, and in particular your thyroid. The thyroid is a major gland responsible for full body synchronisation, your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
When being attacked by your antibodies the symptoms experienced are diverse, scary, odd and some considered life threatening.
Initially the anti thyroid medication is prescribed to stop your own production of thyroid hormones and to bring you back down into range and hopefully relieve the worst, if not all of your symptoms. If too much anti thyroid medication is prescribed you might start feeling more ' hypo ' than ' hyper ' and the idea is that you be prescribed just enough to balance your hormones to give you back ' you '.
This can take time and needs a skilled endocrinologist at the helm with an understanding of trying to find ' remission ' and the inter play that your antibodies will have on any ' success ' .
The NHS tends to give a 15-18 month window for anti thyroid medication taking the long term view that removal of the thyroid, the offending gland, is the best answer, as although you will then be hypothyroid, there is medication for this and you can be managed in primary care and discharged from the hospital.
Living without a fully functioning working thyroid comes with it's own set of problems, as can be seen by the numbers currently on this website alone ( 100,000 ) looking for answers.
A fully functioning thyroid is known to produce T1, T2,T3,T4 and calcitonin - currently on the NHS you can only be prescribed one hormone T4 - Levothyroxine.
Some people manage ok with just T4 - sadly some do not and although T3 can be prescribed it is currently restricted due in the most part because of price in the UK.
There is also full thyroid hormone replacement which is called Natural Desiccated Thyroid and this is pig's thyroid dried and ground into tablet/grain form and contains all the same known hormones as detailed above. This medication is very difficult to obtain on the NHS.
Please do your research - I understand Graves symptoms can be challenging - I have become more ill since treatment with RAI than when I was first diagnosed with Graves.
Anti thyroid medication has to be the best option long term, keeping such a major gland has to be paramount to your long term health and well being:
Surgery is preferable to RAI as it is cleaner and more precise, with the whole gland including the antibodies removed.
You might like to take a look at the Elaine Moore Graves Disease website.
This lady has the disease and went through RAI in the 1990's. Finding no help with her health issues and being a medical researcher she started out by writing a book to help others in the same situation. She now runs a very well respected and researched website with an open forum, much like this amazing site, where any patient with Graves can ask and get answers and support from other forum members.
thank you so much
Hi Pennyannie,
With all the new research in biochemistry flooding us, there has been proof that our body is not attacking our thyroid, but our immune system is attacking the mercury sitting in our thyroid (mercury seems to have an affinity for this organ) and also, if one has gluten intolerance and a leaky gut, gluten molecules are very similar to our thyroid and the IS mistakenly attacks the thyroid as well.
In Autoimmune disease, we must find treat the root cause. It doesn’t really make sense that are body is attacking itself. I’ve had Hashimoto for 30 years. 18 years ago I was given levothyroxine. 200mcg in order to put my thyroid and IS to sleep. As expected many other auto immune diseases followed, since the root cause hadn’t been treated. Finally, when blood cancer got into the picture, I ran to TCM and other alternative doctors and started studying like a fury.
I was put on the autoimmune paleo diet, fixing my gut and changing to bioidentical hormone from swine (T4and s bit of T3) (I pay from my own pocket here in Austria-in agetmany it’s also paid by the insurance), I have been able to start “fixing” my thyroid. I’m down 60% on my hormone intake and since I got the last 3 of my 35 mercury (silver) fillings out on Jan 9 (still doing detox) I assume I might get down another 20-% by December. My CRP is 0.05!!! Beautiful.
On top of that I have more energy at 55 than at 40, no more intolerances, bloating, eczema, brain fog, dizziness, lymph problems, depression, .... 20 kg melted off my body slowly. I’ve got a new lease on life.
Ellen Moore’s book is a great one.
All the best
Anag
With all the new research in biochemistry flooding us, there has been proof that our body is not attacking our thyroid, but our immune system is attacking the mercury sitting in our thyroid (mercury seems to have an affinity for this organ) and also, if one has gluten intolerance and a leaky gut, gluten molecules are very similar to our thyroid and the IS mistakenly attacks the thyroid as well.
Have you got some links for this proof re mercury?
I think you at least have to provide evidence that overturns this:
We studied whether amalgam fillings are more frequent in Hashimoto's thyroiditis patients and whether it is a causative factor for Hashimoto's thyroiditis. Statistical analysis revealed that there is no relation of amalgam with Hashimoto's thyroiditis.
pubmed.ncbi.nlm.nih.gov/244...
drhyman.com/blog/2013/10/18...
This contains information from one of the worlds leading functional medicine doctors, Dr. Hyman, Director of the Cleveland Clinic for functional medicine. He and many leading doctors I follow can tell you which research proves that mercury collects at the thyroid and brain.
I have attended thyroid seminars and followed thyroid summits in English and German including dozens of thyroid specialists and all stress the fact that heavy metals, especially mercury, disrupt the thyroid.
My Hashimoto onset was when I was 16, two years after getting 19 amalgams put in within a two month period. By the time I was 30, I had 35 mercury fillings in my mouth. My Hashimotos was finally diagnosed at that time after many years of suffering.
Regarding studies, there are studies that contradicts each other. It’s necessary to look at the methods.
My daughter was born with high mercury levels because of my amalgams. A study done about 4 years ago, dissecting the brains of 300 babies that died shortly before, during or after birth, proves that the amount of mercury in their brains was directly correlated with the amount of amalgam and the amount time the amalgam was in the mother’s teeth. My daughter has no amalgams.
Well, I went to that site and he argues, at length, that mercury has lots of deeply unpleasant effects.
But I couldn't find anything which supported the claim:
our body is not attacking our thyroid, but our immune system is attacking the mercury sitting in our thyroid
I admit that I did not watch all the videos.
Hi pennyannie
My thiyroid was removed may last year I had 3 years of sheer hell trying to get my gp to listen to me about my awful symptoms but he just put them down to the menupause 😠 when I was eventually diagnosed in 2018 my gp couldn't belive it... No Sh##!! Because I was left with hyperthyroidism for this time my thiyroid was completely knackered it was broken my body was also in a state. I gathered all info I could on my illness and like you said its your body attacking your thyroid my anti bodies were very high indicating graves I requested an uptake scan this confrmed graves, I asked what my options were as my thyroid was not the problem it is my anti bodies I was told the only treatment was to suppress the immune system which required the same drug as you have when you have a liver, kidney or organ replacement but that medication would not be offered as thyroidectomy was my only avenu because of how toxic it was to my body.. I had the op and yes I did feel better but unfortunately I have a dumb endo and gp so I'm now struggling with hypo 😢 but I'd rather have this than the thyroid which would never recover even anti thyroid meds were no good I just kept throwing them back so I would say it depends on how you feel I was bedridden for over a year before diagnosis 😩😩 still not right but hopefully I will get their.. 🙏
Hey there Birkie,
Yes I understand your situation and we have talked before.
Graves is a poorly understood and badly treated auto immune disease and until all auto immune thyroid treatment comes under review and the medical profession change their stance on the treatment options we are between a rock and a hard place.
As you have briefly mentioned, doctors and endos alike are not well informed and seem to make no effort to improve their knowledge base.
I remember buying a copy of Elaine Moore's book - Graves Disease A Practical Guide - for my doctor, as she had referred to me as a conundrum and offered antidepressants.
She refused the book, and so I just started to make a distance between her and me.
I'm now self medicating as the stress of it all, trying to get a trial of T3, trying to get acknowledged was pulling me down even further.
I wrote to my doctor advising her of my self medication and offered to comply with the yearly thyroid blood test providing T3 and T4 were measured - I heard nothing back, not even an acknowledgement, and that was about two years ago now.
I'm fortunate in that all my health issues are Graves and RAI related so I 'll just stay away and mind my own business.
Hi again
That's awful your doctor sounds just like mine I tried to give my gp info on bloods like doing T3 T4 not just TSH.. But he brushed that off.. Saying do you realise how ill you were... Hummm yes I was the one in hospital with thyroid storm.. 😠 He thinks a TSH of 3.53 is normal tried to tell him its not,, that has just made us enemies and I find that very unprofessional of him.. My bloods were so bad my consultant accused me of taking medication from abroad saying you should not take anything from other countries for your thyroid its dangerous... I told him I've never taken any medication from another country 😠 and my bloods are so bad due to incompetence on my GPS part for not diagnosing me for over 3 years.. He refuted this also we can't win no wonder so many on here source their own meds do consultants and GPS realise its the only way some can actually get better its a scandal and as you say they need to change the way they deal with us as patients.. I was offered antidepressants I said ho you'll offer me those zombie tablets but won't give me the tablets I really need.. Its mad.... 😠😠😠
It took 20 years for my diagnosis. I’ve lost so much trust in conventional doctors. The information is out there in internet and books. But why should we have to read thousands of pages? Why do we pay the doctors. Also, most wait to start treatment so long, that our thyroid is really damaged, when the time comes. I was an opera singer and travelling living in 5 different counties. I was falsely diagnosed in US, Canada, England, Germany and Austria. The third doctor in Austria found the Hashimoto, when I was talking to her at a friends party. A month later I went to her office and she tested my thyroid twice within a two month period. That’s when she caught it. There were already hundreds of tiny lesions on my thyroid.
I had half of my Thyroid removed about 30 yrs ago. My other half took over producing enough hormone to keep me well. The remaining half has a number of small nodules but it still works OK. I was put on Synthroid after surgery but I became hyperthyroid. I was taken off all thyroid supplement and I am doing well.
I have had a total thyroidectomy and at times like now I wish I hadn’t. I had it in July 2018 and 2 weeks ago I was offered a trial from a hospital that is not my local. My GP and local hospital refused to prescribe Liothyronine and I have been on Levothyroxine until now. I had to ask for a referral to a different hospital. You have to fight for the correct meds most of the time and I have learnt so much on here that I went to the hospital armed with lots of information to say why I need it. Endo’s sometimes don’t know about the thyroid which is scarey as well as frustrating. No one can tell you what is best it’s how you feel but ask about the aftercare and entitlement to meds before you decide. Good luck.
I know several relatives that had their thyroid removed for several reasons. One was gravely I’ll and the removal practically saved her life. Ok.
The others regret it. They now know there were other possibilities to “fix” the thyroid.
I have Hashimotos and after 15 years of taking top dosage of T4 to put my thyroid to sleep, so that my immune system settles, I finally found answers. I went on an auto immune diet, got amalgams out, switched to bioidentical hormone from swine, upped my Vit D to 70 and optimized my selenium. After 1.5 years, I was able to reduce my meds by 60%! Please see an alternative thyroid doctor. I was living “without” a thyroid and it’s not funny. It’s a very important organ. There could be a way to fix it, if you get the right doctor and are willing to adapt your lifestyle longterm to get healthier and restore your thyroid.
Also educate yourself. You can start here.
Hiya,
You might have to continue with the carbimazole for a bit longer. Someone I know was diagnosed with hyperthyroidism and they treated her with carbimazole for over 2 years. She felt absolutely awful, gained loads of weight and her specialist talked about giving her radioactive iodine therapy but they continued with the carbimazole until she became hypo. She's a lot better now so, maybe wait a bit longer and then made a decision when you know the full facts of the surgery and post operative care.
TT x.
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