Further update to thyroid removal.

[Billyboy2u]

My GP rang yesterday, although not the GP I usually see, She started by reading no my endos recent appointment and she agreed we had to look for a long term solution for it. Talking me through treatment after it’s removal.

I started off saying to her certain points raised in my posts in here. More importantly that I was taken aback by the fact it’s been over such a short time of treatment. I was only on the medication 3 months block and replace. I then stopped all meds. I lasted over 18 months before I relapsed and put it over to her that this time I may go 3 or 4 years. However she cut me off and said we’re , where we are and need to look long term although did I appreciate on what I knew about it. All learnt in this forum.

I ended it by saying I’d not made up my mind yet and was still thinking I don’t want it removed at all. She then said I’ve only 2 weeks before my endo needs to know for sure. So think about it.

I don’t like being pushed in one direction. I’m not in any pain with it. I have the odd day when I can’t be bothered but nothing that makes me feel ill.

I just can’t understand the rush to know.

I should have asked what happens if I refuse the operation or the pill to burn it out. Will they still treat me. ?

[shaws Administrator]

Take your time to make a decision - there's no rush as once they remove your thyroid gland it cannot be replaced.

You can always go to another doctor or consult another Endocrinologist.

Those members who've had Block and Replace will respond and give details of their journey after having thyroid gland removed.

[jimh111]

If block and replace (or just carbimazole) controls your hormone levels there is no need to have your thyroid removed. If you can't get your hormone levels under control then it makes sense to have a thyroidectomy but make sure they make a serious attempt to control your levels with tablets.

[SeasideSusie Remembering]

Billyboy2u

One way to look at it - they remove your thyroid, they discharge you. Any further treatment, you will more than likely become hypothyroid, will be down to your GP. You are off the endo's books. End of.

You have the right (under Equality, Diversity and Inclusion) to be involved in decisions about your treatment and care. I'm pretty sure that this doesn't mean that your endo, nor your GP, can bully you into a procedure you don't want and would prefer to take your time to see how things go.

[Billyboy2u]

The first time it happened it seemed worse but thinking back it was more shock as no one knew what was wrong with me.

This time I caught it early as I knew that the first thing to go as it were is my bottom half of my legs and feet swell so when that happened I got my bloods done and was on carbinazole just as my levels were getting out of range so at worst only felt unwell for a few days. That’s why this talk of surgery is suck a shock to me. At worst I have the odd day when I feel a I can’t be bothered.

Thanks for your replies.

I’ve a feeling I’ve worse to come but until then I’ve no intention on letting my butterfly go.

[SlowDragon Administrator]

Many people after thyroidectomy can not manage on just levothyroxine, they need T3 prescribed as well

Currently getting T3 prescribed is all but impossible on NHS

They aren’t bothered if you can only live a shadow of your life on just levothyroxine

There are many members been on Carbimazole or block and replace for years

[Billyboy2u]

Thanks

[Gingernut44 in reply to Billyboy2u]

Don’t be bullied into making a decision now, I was and I deeply regret it. I had RAI treatment and when I reported side effects from the Levo to my GP he said “well, stop taking them and have a blood test in six weeks”. That was another big mistake- I thought he knew what he was doing. I haven’t been well since and that was three years ago. I have been refused T3 treatment on the NHS and it’s cost me a fortune so far trying to find a privately sourced T3 that I can tolerate. DONT BE PUSHED

[thyr01d]

Just a little comment, you are not 'refusing', a term that GPs sometimes use that accesses the helpless child in us, you are simply declining. It's your body, your choice, the GP's role is to advise not pressure you and setting a 2 week deadline sounds like pressure. It's a bit pointless to do that anyway because I am sure that if in 2 months or 2 years or 10 years you go back and say I would like the procedure now then it will be available for you. Best of luck.

[Billyboy2u]

Thanks for the posts guys. Those who have followed this will now now I’ve no intention of having it removed. More so by the great feedback through your experiences. THANK YOU.