Thryroid treatment

[HuffleWoof]

Has anyone had to have theirs removed? I've been given the option of having it removed or a radioactive iodine treatment.

I'm hyperthyroid it's been a nightmare, I thought I was losing my mind on antidepressants and diazepam for the racing heart, it was only when I lost 3 stone in about 6 weeks it's all been discovered. I feel good I've lost weight but I'm pretty sure it's all muscle I feel so weak.

I've got to get rid of it because I can't ttc on carbimazole. I'm 31 and still overweight despite losing weight 🤦‍♀️ probably why I was ignored for so long

Carbimazole is usually an 18 month treatment. I took it and it was very successful. You are young and have plenty of time to have children. I would definitely consider drug treatment before going down the other routes

I had part removed many years ago - end of 1st year at Uni (I’m 56 now) - best thing I ever did. Last 10 years it’s been under active so am on Levo but even so am v pleased I had the op.

I had Graves, and fell pregnant while on carbimazole. Moved to PTU while pregnant and even breastfed too, but after 5 years of hyper the endocrinologist offered surgery or RAI.

Lots of reasons why I choose RAI at the time but very much regret not having thyroidectomy; if you haven’t finished having children then recommend surgery over radio active iodine as I think you have to wait 6/12 months after the tablet before ttc? Elaine Moore has a website with info, as does Thyroid UK.

Hear you on the weight loss! The lack of sleep, palpitations and mood swings were not funny.

I hated RAI!

When I had the radioactive iodine after my thyroid was removed for cancer I had to sign that I understood it wasn't safe to get pregnant for a couple of years.

Radioactive iodine worked brilliantly for me but sounds like you would be better off with surgery if you want to ttc. Bear in mind it might still take a while to sort things out afterwards if you end up hypo, that's often the case with iodine treatment too but I got very lucky and have had no further trouble and drug free so far 🤞

I would be very very cautious about having RAI or a thyroidectomy. Likely best case scenario you will permanently hypothyroid and will need thyroid medication for the rest of your life. Although thyroid medication works for many, many others are left permanently under treated.
There's a lot of controversy around thyroid treatment. Go onto the thyroid U.K. forum on health unlocked to have a look at the stories of people who are underactive and are not being adequately treated. I would also post your question on there, you should get some useful responses.

Once you've gone down the RAI/thyroidectomy route there's no going back. So do your research and make sure you are 100% happy with your decision whatever that is.

PTU is a medication option for hyperthyroid women who are pregnant. But I doubt you would be advised to try to get pregnant however until your thyroid is under control.

Take the carbimazole. As PP said…the treatment is typically 18 month and most of that should be on a low maintenance dose.

I was just married when I was diagnosed and at 37 I wanted to have kids. I spoke with my endocrinologist and he was reassuring…said if it happened we would deal with it. I stayed on contraception for the first 6 months of treatment then when I got down to 10mg a day dose, we tentatively started TTC assuming it would take a while…..of course…I got pregnant that first month of trying. Endo put me down to 5mg and was SO reassuring. It is a risk of course but problems not as common as you are made believe. I think I may have come off medication towards the end as I think pregnancy has people tending towards hypo, so it kind of resolved itself. Pregnancy was fine and baby was perfect and is now a healthy 7 year old.

good luck op….try medication before anything more drastic would be my advice.

I had Graves and thyroid eye disease. My levels were literally off the charts when diagnosed but I never lost any weight (the cruelest bit, lol)

It took years for them to get my antibody levels down enough to consider corrective eye surgery but they never really could so I had it out. Rai isn’t an option if you have thyroid eye disease but I understand try and it can be hit or miss in trying to knock out the right amount of thyroid. So you may end up on thyroxine anyway.

If your case is straightforward and you are responding to the carbimazole, then persevere for a bit maybe, if you aren’t in a huge rush to conceive. Sone people’s do just resolve.

I had to be quite assertive to get them to put me on a high enough dose of levothyroxine to feel normal ( higher than my t4/tsh numbers said I needed) It takes a while to settle so be prepared not to feel totally normal straight away.

You take your pill first thing before your morning coffee (sometimes I don’t bother and do it after) and that’s it. A slight bore but you never need think about it again. So basically what I’m saying is that if you do need to have it done, don’t stress too much (and find yourself a great ENT for a pretty scar, mine was done at Addenbrookes and you literally can’t see it)

I had a full thyroidectomy in 2020 and I'm on levothyroxine for life now. I feel a hell of a lot better now it's removed than I did taking carbimazole to treat the hypothyroidism. I've just given birth to my second DD (first after having the surgery)

Ah thank you!

I also forgot to say: I had no trouble conceiving post-thyroidectomy (despite being 40) and although they obviously kept a closer eye on me, it really wasn’t an issue, they just bumped my dose up a bit.