I had a hemithyroidectomy when I was 12 for a fast-growing goitre that they were concerned about due to my age. My neck was fine for years (I'm now 29) and I never had to go on any medication.
However since 2017 I've had another large multinodular goitre growing on my remaining left side. My thyroid levels have always remained normal and I've never had any symptoms. Due to feeling slightly self concious I pursued RFI at UCLH. Unfortuantley my nodule is far too big and when scanning they took a biopsy. This has since come back as thy3f.
UCLH have suggested surgery as my only option. However I am very reluctant to end up on lifelong medication when I have no other symptoms, just cosmetic. I also have quite a chaotic lifestyle so am concerned im going to forget to take it or take at incorrect times e.t.c and i have a very busy full-on job and know it can take a long time to get doses right. I am midly concerned about the cancer risk, and feeling quite stressed about what to do. I know in some countries there's more of a watch and wait approach, but that doesn't seem to happen here.
TDLR: new finding of thy3f and total thyroidecromy suggested. What are other people's experiences and what would you do?
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BeCaw93
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I think I would start with a full thyroid evaluation, have you had that?
GP tend to look at TSH only - you need full test
TSH
FT4
FT3
TPO ab
TG ab
Folate
Ferritin
B12
Vitamin D
Add any results you have *with ranges*
If you do have surgery, it very important you have a complete picture & benchmark of levels.
It’s a shame your not a candidate for RFA, but I say perusing the option was a good call.
Edit: I didn’t answer your question - with size of MNG and Thy3 - I think I would agree to operate. This might be best course & definitely preferably to RAI given your age.
Don’t think of it as lifelong medication it’s a hormone replacement. Get a pill organiser, Set an alarm, it will become second nature.
I would agree with you in being reluctant to have a completion thyroidectomy. Your thyroid is an important organ, and those of us with no thyroid (mine was removed for follicular cancer) can have a hard time of it.
Most of what you read about thyroid illness is about Hashimotos auto immune thyroid disease, as that is by far the largest patient group. Having no thyroid of course is very similar to being hypothyroid by other methods, but can be a little different. On the positive side, auto immunity can cause extra problems we don't have to deal with. On the more negative side, the thyroid has little understood roles in regulating thyroid hormone, and even having a little scrap of tissue remaining can be helpful. Once we have no thyroid we miss out on all of that.
I think the one piece of advice I would give to anyone who expects to have a thyroidectomy in the future is to plan to lose a bit of your energy levels. I always try to figure out how well most people are, and to what extent you can expect to live a normal life after thyroidectomy, when reading forums online and talking to people I meet. My very subjective estimate is that moat people will have about 80% of the capacity they had before thyroidectomy once they are on hormone replacement. A small number of people will be the lucky ones who can keep up a busy life and carry on running marathons, etc, and another small number will be the unlucky ones and be considerably impaired in what they can do (like me).
On 80% capacity, I would say you can live a normal life, probably continue to work full time, but need to have a more gentle life. Build some rest in to your week, perhaps move sideways into a less stressful role or reduced hours, cut down on vigorous exercise, big hobbies, etc. I think the earlier in a career you're able to think about this, the better off you are. Because hopefully you can think about your five or ten year plan, and work out a way to meet most of your goals while being able to do a bit less, and while being kind and gentle to yourself and what your body may be capable of.
I admit I don't have much understanding of these more ambiguous biopsy results. I feel like doctors are a bit keen to perform thyroidectomies when they aren't sure whether it's cancer or not. They tend to believe that everyone will be completely fine on thyroid hormone replacement, so for them the stakes are low. I think if you have the opportunity to push for more conclusive results then it is worth doing.
The other thing I wanted to mention about symptoms from my experience is that by the time I had my thyroidectomy (around eight months after I first noticed I had a lump, but I now suspect it could have been there for years at that point), I did have some thyroid symptoms. I was finding myself too tired at work and really struggling in the morning. I would sometimes cry when getting ready to leave the house just from tiredness, and could feel like I was moving through treacle when exercising hard. My thyroid panel results we also a bit abnormal, but not enough for doctors to take much notice. If you've got some results you could share them in a brand new post and members will advise whether they look optimal or are getting unusual.
When you say your life is chaotic it makes me wonder a bit if that could be thyroid symptom related. Hypothyroid symptoms really creep up on you, and can be hard to spot. I have several close friends who are hypothyroid, and it sounds familiar to me. Being hypo makes you feel tired, but also has a lot of other cognitive symptoms as well as physical, so it impacts executive function and makes it hard to plan or get an overview on your timings, so it's easy to get quite chaotic.
Heehee, this has turned into a bit of a waffle but I hope there is something useful to you in there!
Get a second opinion!Living without a thyroid is very difficult and playing around with the right meds/doses can take up to a year to get right and even then, you may never feel your self again.
Thanks for all the responses. This was my second option and in meeting the surgeon yesterday he thinks I’m slightly hypothyroid now anyway so makes sense to go ahead with it. Hopefully my endocrinologist is good afterwards!
hi there, I appreciate your post is 1year old. I’m replying now because I have 2 nodules on either side of my thyroid and uclh recommend total thyroidectomy. Like you I’m very busy, very active have 3 children. I’m reluctant to go for an operation 😭😰🫣 could you please share what you chose to do in tge end? How are you getting on? I hope all is well x
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