Thyroid removal

[Flower1703]

Has anyone had their thyroid removed and how long recovery was and was there any weight gain??

[Hidden]

Best advice re removal of thyroid is to avoid it if you possibly ca especially the option you are likely to receive following the operation to have the remnants that the surgeon could not remove obliterated by radioactive iodine treatment.You need to ask the surgeon and the radiologist what problems can result from this operation and procedure. On the instruction of the GMC they MUST tell you the facts, as they perceive them. This could be 1 of 2 things - that either all you will need to do afterward is to take a couple of pills (levothyroxine) each day and you will be perfectly fit and well again, OR that you will never get well of levothyroxine and must take NDT to regain your health but that the NHS will refuse to prescribe them for you.

Sadly, the second case is the actual truth. For the life of me I fail totally to understand how any doctor, endocrinologist or radiologist can honestly say that they actually believe that the first case is true.

I also fail to understand how my CCG can accept as factual the "recommendations" given to them by assorted medical bodies that NDT is dangerous to your health and wellbeing, yet refer patients like myself, who complain endlessly, to a NHS thyroid SURGEON in a local NHS hospital who prescribes NDT on a private prescription!

Is there any weight gain? - plenty and it doesn't stop until you start taking NDT. As soon as you do the weight gain stops, in my case remaining as a permanent feature.

In my case the recovery time was about 15 hours. I left hospital skipping and dancing and went shopping at Tesco the same day to the amazement of the some shoppers as the stitches were still in my neck. Sadly this miraculous recovery lasted just a couple of months and, having the utmost faith in doctors, I endured 8 years of misery before realising my mistake and learning of the existence of NDT. Soon afterwards I was sent to see the above mentioned surgeon but refused to become part of the conspiracy which denies us the NDT.

I hope that my personal experiences help you make the correct decisions for your continued good health.

[bantam12 in reply to Hidden]

Why are you scaremongering, just because you have had problems it doesn't mean everyone will have the same.The vast majority of people are well on Levo, thyroid or not and to scare people away from surgery and RAI is unhelpful.

And yes I've had both surgery and RAI and do very well on Levo as do both my sisters.

[humanbean in reply to bantam12]

If people are told that they need thyroid removal and/or RAI and they are told that they will be absolutely fine on Levo afterwards, then it must be a huge shock to the system for anyone who doesn't feel well and who then starts getting gaslighted and offered anti-depressants for their symptoms.

I think telling people that everything will be fine after treatment is no more accurate than telling people they will feel awful. Nobody knows in advance. There are lot of people who feel fine and there are a lot of people who don't. And just telling one half of the story (either half, it doesn't matter which ) is unethical, in my opinion.

I agree with Hidden . People with thyroid disease or no thyroid should be offered more than one choice to treat their condition and those choices should include any combination of Levo, T3 and NDT, if they don't feel well on Levo alone.

[bantam12 in reply to humanbean]

I never said everybody will be fine, my late husband didn't get on with Levo so he took T3 as well so I've seen both sides.But telling people they shouldn't have surgery or RAI and will never get better on Levo is wrong and not helpful.

[Flower1703 in reply to Hidden]

What is NDT?? I have a very large goiter which is giving me a lot of bother with eating and I feel very self conscious but my endocrinologist did say that I could have radioactive iodine but the goiter would not go so my only option is surgery so I have opted for that.

[pennyannie in reply to Flower1703]

NDT - is Natural Desiccated Thyroid and was successfully used to treat hypothyroidism for over 100 years prior to Big Pharma launching synthetic thyroid hormone replacement in around the middle of the last century.

NDT is actually pig thyroid, dried and ground down into tablets, referred to as grains and contains all the same known hormones as that of the human gland, namely T1. T2 and calcitonin plus a measure of T3 and a measure of T4 per grain :

I was diagnosed with Graves in 2003/4 and had RAI thyroid ablation in 2005 ;

I now manage lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism and in order to be as well as I can I need I take NDT which I have to buy for myself as in 2018 I was refused both T3 and NDT through the NHS despite the fact that both these options are said to be available through the NHS.

[Flower1703 in reply to pennyannie]

Thankyou

[ling in reply to Flower1703]

What type of hyperthyroidism do you have?

[Flower1703 in reply to ling]

Graves diseade6

[ling in reply to Flower1703]

Do you have antibodies test results?

[DoeStewart]

Hi there, I had surgery but the surgeon decided to take 7/8ths of my thyroid gland and not the whole thing believing that the portion left would give me some thyroid hormones. I had no further treatment and eventually was prescribed levothyroxine which I have taken for 34 years. When I had my operation I was actually in for 5 days, had staples in my wound which were removed after 3 days ( half one day and remainder the next day) I came home feeling OK but I had a 15 month old to look after as well, took a few months for scar to fade. Just make sure of what the surgeon is intending to do and your after care. Good Health to you.

[Flower1703 in reply to DoeStewart]

Thankyou

[pennyannie]

Hello Flower ;

I understand goitre can be be very slow growing but when it's obstructing your wind pipe and restricting your ability to breath, eat, or drink I believe it's pretty much heading towards the conversation of thyroid removal.

Personally I believe surgery a much " cleaner " and more precise procedure, but as you say, you haven't an option, and it's pretty much academic.

I know it's surgery, and that comes with it's own set of risks, but, in reality is there any other option ?

A fully functioning working thyroid would be supporting you on a daily basis with T1. T2 and calcitonin, plus a measure of T3 said to be at around 10mcg plus a measure of T4 said to be at around 100 mcg.

Generally speaking after a thyroidectomy you are placed on T4 thyroid hormone replacement and many people do ok on this treatment option - but they wont be on this forum and probably don't know of it's existence, as they are well and getting on with their lives.

However there are other treatment options for those of us who do not recover well on monotherapy with T4 and we need to add back in the T3 we lost , when we lost our thyroid, and some of us feel better with a synthetic T3/T4 combo whilst others prefer the fuller spectrum of thyroid hormones as offered by taking NDT.

Currently doctors in primary care can only prescribe T4 and you need a referral to an endocrinologist for the other thyroid hormone replacement options.

Currently T3 is difficult to acquire on the NHS due in the most part because of costs, and NDT also costs more then T4 :

20 odd years ago all 3 options were available on the NHS and to some degree we have become marginalised by financial constraints, limited knowledge and we have reduced rather than expanded better health options for many suffering thyroid health issues.

[Flower1703 in reply to pennyannie]

Thankyou

[Heloise]

Technically you never recover. You cannot live without thyroid hormone because it is needed by EVERY cell of your body. Dosing with thyroid hormone supplements does notguarantee it will get to every cell of your body. Thyroid treatment for some reason has

become controversial even though for decades natural, desiccated Armour thyroid hormone was effectively used for many decades before pharmaceutical companies began making

a synthetic T4 (levothyroxine) tablet. Natural hormone contains not only T4(which can be used only after converting it to FT3) and that can be a problem for some.

Panda's post is a cautionary tale which not everyone can expect but the possibility is there.

I've read your previous posts. Did you ever see your test results for hyperthyroidism? If the PTU did not work if you actually needed it (as I have had your symptoms and I am hypothyroid), there is also carbimazole.

However, in patients with severe hyperthyroidism (i.e., free T4 ≥7 ng/dL), higher-dose methimazole was more effective than lower-dose methimazole or PTU. Transaminase elevations and leukopenia occurred less commonly with both doses of methimazole than with PTU.Jun 19, 2007 I hope you can resolve it.

[Oatcake]

Hi Flower, I have just seen this conversation. I had a total thyroidectomy nearly 20 years ago. Like you the goitre was pressing on vital organs causing problems with swallowing and breathing. I just want to reassure you that I had a reasonably quick recovery. It is major surgery. I was off work for 5 weeks. I have been on levothyroxine only and have had to adjust doses up and down over the years. I have had no major health issues related to thyroid, though do have other autoimmune conditions. As far as weight gain is concerned my experience was no different pre and post op. I have been slightly overweight at times but at the moment am well within the weight range for my height. As others have said it can be very difficult for some people but I can only speak for myself. The operation was essential as the goitre was so large and I have no regrets.