Thyroidectomy

[Sidblack78]

I’m having a thyroidectomy for relapsed Graves’ disease in the coming months. I’m a little anxious about surgery quite understandably. Just wondering with others who have had a thyroidectomy how did you feel afterwards and how long it took you to recover and when were you able to go back to work?

[Meanbeannyc]

From the surgery.. recovery was pretty good..

Maybe a week or so?

I stopped taking the pain killers after 2 days and switched over to Tylenol for about a week. Stiff neck and sore throat, otherwise okay...

Getting optimally medicated... that’s another story as I’m 2 years post op and still not good.

[Sidblack78 in reply to Meanbeannyc]

Thank you 😊

[glo42]

I haven't needed surgery but I just wanted to send you a virtual hug and to hope that all goes well for you.

[Sidblack78 in reply to glo42]

Thank you 😊

[annnsandell]

I had two partial Thyroidectomies. The first one was a breeze, I could have gone back to work after 24 hours, it was only the initial dressing that put me back to full life. The second however, I didn't feel well for a while because of the anesthetic which apparently is quite common to have a reaction having two operations close together. Good luck, I suspect it will be easier than you are thinking.

[Sidblack78 in reply to annnsandell]

Thank you 😊

[Oatcake]

Hi, I had a total thyroidectomy in 2002 because of a goitre causing problems with breathing and swallowing. I recovered reasonably quickly from the operation and felt ready to go back to work in about 3 weeks but my GP signed me off for 5 or 6 weeks - I can't quite remember now.

I was put on 100 mcg levothyroxine straight away and found I was well on that with no hypo problems. Indeed as I got older my dose has been reduced and at the moment I 'fiddle' with tablets and average out at 80 mcg a day.

Make sure they check your calcium levels after the operation. Sometimes the parathyroid glands can be damaged and this can lead to low levels of calcium. As this happened to me I am also on Adcal-D3 tablets for life.

I tend to keloid scarring so my scar is still noticeable but not too bad and it doesn't bother me.

Hoping your operation goes well, that you make a good recovery and that Graves issues will be a thing of the past for you.

[Sidblack78 in reply to Oatcake]

Thank you 😊

[Hennerton]

I was in overnight and left hospital early the following day. Recovery was easy but I hope they give you some chewable calcium tablets, as my parathyroids were a bit annoyed about it all and this is common. You will feel a tingling around the mouth and nose and must quickly chew a tablet. It is very quick to act. I carried the tablets with me all around the house until the problem sorted itself out - maybe a week?

I remember doing a big Waitrose shop a week after the operation and feeling quite exhausted. Gradually all was back to normal but finding the right dose of the replacement hormone T4 is difficult and takes time.

If I were you I would also ensure that you bring up the subject of Liothyronine tablets, which is the other hormone, (T3) produced by the thyroid. Unfortunately the NHS and in fact all countries around the world believe it is not necessary and you will be given only Levothyroxine to replace all you have lost. For a while you may be fine but eventually the loss of it can start to show in various instances of ill health. Try to get an agreement in writing now that if the absence of T3 is an issue for you, the NHS will allow it to be prescribed for you. It changed my life. It can be bought privately but is very expensive, because of a very bad deal made by the NHS with its supplier. In fact it costs a few euros in Europe but clearly that is not easy to obtain any more.

I suggest you see how you get on and for a considerable time you may be absolutely fine but bear it in mind and if you begin to notice health problems after a few years, you need to start investigating the possibility of a T3 trial. Only full thyroid blood tests will tell you what is going on in your body and it is a good idea to ask for copies of all tests and learn how your body is reacting. Unfortunately the NHS is fixated on doing only one test, TSH, so for better info, you either make a fuss, like I do, or you pay to have them done. This site has information on private testing.

Sorry this is such a marathon but I am truly just trying to help. I hope all goes well.

[Sidblack78 in reply to Hennerton]

Thank you 😊

[twinkiegal]

How well did you respond to anti-thyroid drugs? ling just posted a really interesting study about using ATDs long term. Not that I have anything against thyroidectomy, if my Graves' wasn't easily controlled that is what I would do as well! But just in case you endo didn't make you feel like you had any other option...

healthunlocked.com/thyroidu...

[Sidblack78]

Thank you 😊

[NIKEGIRL]

Hello. I am interested in how u r going? I may have to consider a thyroidectomy due to not tolerating ATD. I genuinely hope this finds u well

[Sidblack78 in reply to NIKEGIRL]

Hi I’ve not had my thyroidectomy yet still waiting was told a few weeks ago it would be August unless they have any cancellations 😊

[NIKEGIRL]

Hi. How r u coping? Have the ATD not worked out for you? It’s such a big decision as you know. Scary.

[Sidblack78 in reply to NIKEGIRL]

Hi I’m ok just want to get it all over and done with. ATD did not work for me I was on block and replace from 2018-19 took off it and relapsed a few months later and was put back on carbimazole and told that I would need Radioactive iodine or surgery. I’ve opted for surgery but just waiting as due to pandemic things are behind. Hopefully will get my surgery in august on the waiting list.

[NIKEGIRL]

Oh I feel for you. My body did not like the carbimazole. Nausea, migraine and loss of taste I got on that drug. R u coping ok taking it whilst waiting for surgery?

[Sidblack78 in reply to NIKEGIRL]

I sometimes wake up achy and feel really tired but difficult as I do shift work days and nights and sometimes a quick turn over from nights to days so hard to tell sometimes if that is making me tired. I had a 24 hr ECG last week as I get palpitations and light headed at times my bloods were all ok. Just waiting for ECG results. Sometimes I just don’t feel right physically and mentally I feel emotionless at times. It feels like it’s out of my control you don’t realise until you have thyroid problems how much it controls your body. Hope your feeling ok and I don’t know about you I just want feel better again 😊

[NIKEGIRL]

It’s a terrible disease physically and psychologically. I found myself an emotional wreck. M feelings got intensified. If I felt sad I felt very sad. I found the emotional side to be the worst. I’ve only got my blood into range. I feel a lot better. I don’t think there is a right or wrong choice it’s very personal.

[Sidblack78 in reply to NIKEGIRL]

I agree with you and can totally empathise how you feel. Even when my bloods are in range I can feel rubbish. I hope that you feel better soon and we will get over this horrible disease!! x

[NIKEGIRL]

Agree with last comment. I do shift work as well so empathise with your work position. I work earlier only not lates. Kia Kaha means “STAY STRONG” in Maori from New Zealand 🇳🇿

[Sidblack78 in reply to NIKEGIRL]

Keep in touch and let me know how you get on and I will let you know when I’ve had my surgery 😊x

[Sidblack78]

Love this thank you so much and the same to you ❤️

[NIKEGIRL in reply to Sidblack78]

All good.

[Cavapoochonowner]

Hello, I too have graves disease.Tried titration and now on 2nd lot of block and replace after I relapsed within 2 weeks of stopping my tablets. At the moment my consultant is concerned about my white blood count.If it keeps dropping I'll have to stop the carbimazole.My nose is constantly blocked and my throat feel a fullall the time although I haven't got a goitre. I've been very frightened of a thyroidectomy but recently someone from the Netherlands posted on here saying they had no regrets and felt a million dollars to what they felt like before. I have asked for a referral to discuss a thyroidectomy and will take it from there.Best wishes to you and I'll follow your journey.

[Sidblack78 in reply to Cavapoochonowner]

I was advised last year by my endocrinologist to have radioactive iodine or thyroidectomy i discussed it with both the radiology consultant and ENT consultant and decided on surgery. I was speaking to someone earlier who had a thyroidectomy and years ago and they said it was the best thing that they did and they felt well with it. It’s a big decision to make and it has to be right for you. Hope it all goes well for you 😊

[Cavapoochonowner]

Thank you.Same to you too.I have thyroid eye disease so cannot have RAI. It has been frightening to hear all the problems on here so I have been scared.I do realise that if everything is going great you probably don't need to come on a site like this, so there must be many who have no problems. I'm just getting fed up of feeling awful and thought I'd explore the alternatives.

[Sidblack78 in reply to Cavapoochonowner]

It’s worth doing that and it’s good advice on here and we all are suffering in similar ways and can all support each other through this. We all know how it feels! Hope you feel better soon 😊

[Cavapoochonowner]

Thank you.