Thyroidectomy : Life without thyroid ? - Thyroid UK

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Thyroidectomy : Life without thyroid ?

CamilleC profile image
7 Replies

Hi All, I am new on this forum . I wanted to know if someone here had a thyroidectomy? just went to see my surgeon and he think I should have one because he is concerned about my nodule! I am on EFRA and I cannot be on levothyroxine, as I am part of the 10% of the population that it doesn’t work - if you may had one, what is life without your thyroid? do you regret it? do you have others symptom that has appeared after? Do you know anyone who have reduce their nodule without having surgery? thank you for your help.

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CamilleC
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7 Replies

Your post is rather confusing.

You still have a thyroid but you are already on ERFA?

If that is true then it indicates your thyroid is already not working.

So, unless you are suffering from side-effects caused by your thyroid, there's no point doing anything.

That might be inability to breath properly and/or feeling ½-dead all day, unable to move about without undue effort and complete exhaustion.

Otherwise the risk taken by having an op would be too great.

Hennerton profile image
Hennerton

Life without a thyroid is generally not easy, so do not be pushed into it by a surgeon whose job it is to remove them, without ever knowing what happens later to his patients. At the very least you should get confirmation from your health authority or GP that they will prescribe T3 in addition to T4, if your blood tests show that you will benefit from it. Are they prescribing your NDT, Erfa at the moment? If so, that is very positive.

Read as much as you can on this site so that you are well informed when discussing it. Your GP is unlikely to know very much and will rely on the TSH blood test to monitor your dose. This will be hopeless and will probably leave you undermedicated and miserably full of symptoms.

On a positive note, many people do well and you may be one of the lucky ones. Keep track of your iron levels, ferritin, B12, folate and Vit D. These are often low in thyroid patients and that will have an effect on your general health.

For the moment, I wonder if a second opinion might be useful. Whatever, do not be rushed into it, unless someone can give you a very good reason why it must be done.

CamilleC profile image
CamilleC in reply toHennerton

thank you so much for all your good advices. It's helped me a lot to investigate a little bit more...

I have finally had my second opinions from another hospital this week. I was told for over 10 years that I have a nodule of 7 cm on the right side on top of the right thyroid. My neck looks big on this side.

however, it appends I was missed diagnosed and I have in fact a malformation from birth. I don't have a thyroid on the left side, but both of my thyroids are on top of each other’s on the right side. I am so thankful I did another scan and asked for another option.

Unbelievable, they just discharged me right away of course and told me to keep taking my EFRA and vitamins supplements.

At list, it’s good news, I do not have a nodule, and it explained why my right-side neck is bigger and I don’t need a thyroidectomy

Hennerton profile image
Hennerton in reply toCamilleC

Great news for you and thank goodness you had a second opinion. It shows how careful we must be...

Lois71 profile image
Lois71

hello, I had the thyroidectomy in April of last year and although I regretted having done it for all the unpleasant symptoms that I have suffered since then, it was necessary, first because I already had too many benign nodules (diagnosed with hashimoto in 2005 ), so, the gland was no longer working properly since perhaps some of them were hyperfunctioning and I felt bad anyway. The other reason was the oncologist advised me to prevent future cancer.

Just a few days ago I started the combined therapy of Levo with T3 because since surgery I have not felt well with different doses, apparently I have had some improvements so far and I hope to continue on that path.

I would advise you to verify if you really need the extraction, and if so, try to follow the guidance of the experienced women of this site, since they have helped me more than the seven endocrinologists I have seen in my life.

Wish you the best.

CamilleC profile image
CamilleC in reply toLois71

thank you for your help and advice . it has helped me to investigate more and get a second options. As you the surgeon thought to take everything to prevent future cancer. however, it appends I was missed diagnosed and I have in fact a malformation from birth. I don't have a thyroid on the left side, but both of my thyroids are on top of each other’s on the right side. I am so thankful I did another scan and asked for another option.

Unbelievable, they just discharged me right away of course and told me to keep taking my EFRA and vitamins supplements.

At list, it’s good news, I do not have a nodule, and it explained why my right-side neck is bigger and I don’t need a thyroidectomy

thank you so much for your support.

CamilleC profile image
CamilleC

thank you for you support and share your experience. Often we don't get to know what is the real life after surgery and it's hard to understand what are the others effects. I found out this week I don't need finally a surgery and that the nodule wasn't a nodule . it was apparently missed diagnosed ! I have a malformation from birth !! I don't have a thyroid on the left side, but both of my thyroids are on top of each other’s on the right side. I am so thankful I did another scan and asked for another option. sharing your experience helped me to trust my guts so thank you and I hope there is maybe a solution for you with the breathing issues you have at the moment?

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