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Terrified of thyroidectomy and life after(12 Posts)
I'm due to have a total thyroidectomy next week, which I was more relaxed about when it was originally booked, but now that it's almost here...I'm an absolute bundle of nerves and unsure if I should go ahead with it. I have a multi nodular goitre on both sides which is visible (though people say they don't notice it until I point it out...though maybe they don't notice as I have quite a chubby face and double chin) and it has started to affect my life, ie can't wear necklaces without feeling sick, can "feel" it in my throat. If I'm totally honest I am really getting it removed for cosmetic reasons as I hate seeing it in the mirror every day.
My thyroid function is fine, and the endo I saw originally in 2010 said blood tests every 6months as at some point my thyroid would "give up". I saw a new endo in June this year and he ordered a new ultrasound, which showed that it had grown and his recommendation was to take it out whilst I'm young and healthy and before it gets too big. Met a surgeon who I feel comfortable with and who I know will do a good job, who said he's surprised my neck doesn't look bigger, given the size of the gotire.
The problem is I've started researchering "life with no thyroid" and what I've read has absolutely terrified me; hair loss, weight gain, feeling exhausted, no energy, peeling skin, adrenal problems etc. I am getting married next summer and the thought of walking down the aisle overweight and with hair loss fills me with horror, which I know sounds really vain, but mainly the thought of the rest of my life with health problems is terrifying, especially when deep down I think I'm really having the procedure for cosmetic reasons.
Has anyone on here had a thyroidectomy when their thyroid was functioning who can share their story/post op recovery with me? Or is anyone on thyroid medication?
Thanks so much!
Get yourself over to the ThyroidUK forum on www.healthunlocked.com. The knowledgeable people there will advise and support..
What you describe is pretty much the worst case scenario. With the right support and medication you should be fine.
I have had a TT.
You only read the horror stories online. Most people are absolutely fine. I have to pop out now but will be back later...
I haven't had a thyroidectomy but am hypothyroid for other reasons. I would personally advise holding into your thyroid for as long as you can if it is functionning normally. I felt absolutely dreadful before diagnosis and for a ling find afterwards as the standard replacement thyroxine (T4) did not work for me. I would definitely second going over to the Thyroid UK forum mentioned above. I am fine now but it took a long time to realise I needed some T3 as well as T4 and then an even longer time to get the dose right. Most endos won't prescribe T3 and are totally focused on TSH which is a rubbish situation.
i have a multinodular greatly enlarged thyroid which continues to function 'normally'. I have been offered a thyroidectomy -twice. First time was in my 30s when the goitre was really noticeable. I declined after getting 2nd and 3rd opinions. Now last year- in my 70s now - i was more forcefully 'offered' the same operation with deliberate scare tactics to make me agree. Thus far i am not convinced. So i'd say hold off and get a second opinion.
I would get a second opinion. There are people who do very well post TT but even so it would have taken some time for them to recover from the procedure and to fine an appropriate level of hormone replacement.
I am hypothyroid and as a PP stated the standard treatment of t4 replacement doesn't work for everyone and it's a very hard life if you are one of them. I am finally well now I am on t3 as well but it took lots of fighting ( as well as using the horror story filled forums to help me figure out what was going on) in order to get better.
Thank you all for your responses. I'm feeling so conflicted about it and am veering between thinking I should do it now, and then next thinking I should wait. I suppose my fears are I wait and it gets bigger which may make the surgery more complicated, or it turns into something scary, or I start to feel worse etc. I will look at the health unlocked forum as suggested.
I had my TT as I had cancer so had no choice.
I feel fine. It is not what I would have chosen but I feel fine.
The surgery was not too bad. Not pleasant but not horrendous.
I feel ok on levothyroxine. I feel like I can have a normal life.
Feel free to pm me if you have any questions.
Marmitelover, how much t£ and T4 do you take and how did you get the dose right?
Wileycoyote - I take 2.25 grains of NDT which is approx 20mcg of T3 and 85mcg of T4. I got the dose right after a lot of trial and error - think it took me about 18 months altogether. The folks on the Thyroid UK HealthUnlocked forum were amazing.
I have an underactive thyroid, and I have three friends who've had thyroidectomies. my friend who had her removed at 30, and I , used to be the same size. She is still the same size, whereas I am quite a bit tubbier! She has been fine actually, really well. Her was cancerous, so had to go. I think it does really vary. I am still trying to work out the right dose for me, and so I do still have symptoms (tiredness, weight gain, thinner hair). But I have very nice skin, and my friend looks lovely, slender, pretty as ever!
<Disclaimer alert> I live in Germany where they are said to be quicker to remove thyroids than in the UK. I have Hashimotos (autoimmune underactive thyroid) and also had a goitre. When diagnosed, the thyroxine medication helped shrink the goitre and all was fine until I was pregnant with DC1. Then it grew again and I was strongly advised to have it removed before getting pregnant again as they were worried if it grew more in a subsequent pregnancy, it could restrict my windpipe.
So I had it done with all the same misgivings as you. When they removed it they had to have a good old rummage as one side had grown way down under my collar bone so it was not in a good state.
The op and recovery were straightforward. Very little pain afterwards and just a bit of discomfort and found it hard to swallow (drinking through a straw helped). Now the scar is barely visible (I protect it from sun by always wearing a necklace on the scarline.)
The main downside for me was one vocal chord was paralysed from the OP. It made my voice very monotone and I could not sing a note. I think the ENTs thought it would not recover since there was no improvement for three months. But then suddenly it returned to normal again and I have no lasting vocal damage. I have since been told by a doc 'this should not have happened' but it is a risk that is mentioned at pre-op.
The main benefit for me has been a swanlike neck (I like to think). But more importantly my thyroid medication (which I was on already for Hashmimotos) has been much easier to regulate without my thyroid gland and I honestly feel better than I did for ten years pre-op.
The side effects you talk about are the symptoms of an underactive thyroid. If you have yours removed, you will need to substitute with thyroid hormones (really replacing what your thyroid would be making for you) and you should feel totally normal.
I don't want to say go for the op as that is totally your decision but wanted to reassure you that I feel really well without mine!
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