Thyroid removal

[BaileyHorse]

Last year I had part of my thyroid removed due to an abnormal aspiration of a lump on it. This has since come back confirming it was a minimally invasive cancer. I have opted to have the rest of it removed as a precaution and the dr agrees this is the best course of action.

I’m not worried about the op itself as only had it a couple of months ago and know what to expect on the day and after etc. I think the part I am concerned about is actually living without a thyroid and what that means exactly. The dr has obviously talked to me about this spoken about having to take the medication for life and that it can take a while to get this right.

I’m really looking for some reassurance/kind word from people that it will be fine afterwards please! I’ve always been slim and am terrified this may change and I’ll put on weight (I know in the grand scheme of things not important but i want to be healthy). Or that there are other things that may be affected potentially that I would like to be prepared for. Also wondering if I will be more tired/take time to recover after the full removal?

Would welcome any positive stories please

I had my thyroid removed 30 years ago as a late teenager. Technology for removal has moved forwards a lot in that time so damage to vocal chords etc is much less common.
i rapidly put on weight initially as removal means no natural thyroxine so until they get your dosage correct weight can fluctuate. I was stable within 6-7 months and lost most of the weight again but I was young. Over the years it’s been very hard to regulate my weight and having children also threw out my hormones so I’ve been back under consultant led care for a decade. Aside from the weight challenges, when medication is stable and readings are within natural parameters, it’s not a bad life long condition to have. Because I am hypo (not hyper), I struggle with energy levels - but I have a very full time job and children and manage it all - and I’m mindful of the impact that all has on me mentally. Chuck in peri too! The other part of me that suffers is my hair. I used to have lots of it and now I have very little. I wear it long but am now considering alternatives as the strands look more like candy floss these days. I wish you well. It’s not all bad. I’ve lived a happy 30 years for the most part but I think being prepared for some changes is helpful. No one every really explained it to me - but again that would have made little difference as keeping my thyroid wasn’t an option.

Thank you for this, this just confirms my worries me even more about post op 😞

My experience has been quite different from the previous poster. I had radioiodine therapy about 3 years ago in my mid 40s, which completely removed all thyroid function.

I had a brief period of being hypo while my dosage of levothyroxine was increased, but this was easily sorted and I've been stable ever since. My endocrinologist recommended getting my TSH around 1 which seems to work well for me. I feel very well, no issues with weight gain despite being well into perimenopause now.

I hope that reassures you somewhat.

I have felt amazing since full removal however mine was due to year of uncontrollable overactive thyroid and I found the symptoms really hard to deal with. It did take a while to get the correct dosage of thyroxine and even now following blood tests it sometimes has to be altered but I’m now 18months post op and my weight gain was minimal

Thank you both that sounds a bit more reassuring ❤️

@BaileyHorse I had mine out about 10-15 yrs ago. Never have had any problems either. My dr tests my thyroid levels a few times/yr and that’s about that.

If it was minimally invasive, would watch and wait be an option? I had half thyroid removed 8yrs ago and was diagnosed as a cancer. Opted for monitoring as new guidelines/evidence is positive. I managed 6yrs without meds. I get yearly scans and bloods and if ever I noticed red flag symptoms, they will see me sooner. For instance I’ve just been early to see them as I have a swollen remaining thyroid (hashimotos inflammation related) and a persistent hoarse voice. The voice problems are related to silent reflux so not thyroid related. I will always worry about risk of recurrence (who wouldn’t after hearing the c word) but I’m reassured by the yearly monitoring and ENT are more in depth with checking my bloods then the GP ever will be.

Free prescriptions for everything from now on though, if you were paying before.

Thanks for your comment. This is an option yes but to be honest I am such a worrier and have worried about this turning into cancer ever since I discovered the lump back in 2017 and here we are now. I can’t take the risk that this could happen again and I know I would kick myself if then later down the line I had to go through it all again when I’m already geared up for it if that makes sense. I know someone else who had partial removal and all was fine after…now 10 years on they are having to have it removed due to further issues.

Yes i had heard this!

I can understand this, I was the same at the time of finding out the results. There is a lot of evidence to show that recurrence rates are so very low, can’t quote figures off the top of my head right now. Even without surgery there is a chance your remaining thyroid would eventually get sluggish and require meds to assist it anyway. Most people get to know what their optimum numbers are, when they feel the most well. My numbers for all TSH, T3 and T4 are all normal and midrange but at the moment I don’t feel my best and I know my TSH should be much lower for instance. Convincing the GP is another matter really.

You got through the first surgery fine and second time round should be better as you know what to expect post op. If it helps reduce your fears for future issues I would go ahead and have the surgery sooner. A lot of people can manage with meds just fine and I think you quickly become more intune to your body and how you feel. You will always hear more about negative things (same with anything in life really) but there are lots out there who are positive about being on meds. Best advice…go with your gut feeling. Meds can be managed but health anxieties are much harder especially when you’ve been through what you have.

I really appreciate your kind words. Honestly I can’t tell you how bad my health anxiety has been ever since I first noticed the lump all those years ago. Of course I was stunned and shocked when the results were that it had been cancer. I did ask the Dr what the recurrence rates were and she couldn’t quote but didn’t think it was too high. But she then said she felt removal was the right decision when I made that choice. I just know I would kick years down the line if it happened again and then I’m many years older etc.

Why?

https://thyroiduk.org/get-support/nhs-prescriptions/medical-exemption-certificates/

Details here.