Hi everyone
I've got an enlarged thyroid nodule. It's not huge but it's increasing in size. I'm not on any meds as my thyroid function is ok. I've been to see a consultant who has recommended a hemi-thyroidectomy. The only effects I'm getting is if I sleep on my back I wake up as if I'm choking and I have some silent reflux. The consultant said I might end up with a damaged voice box from surgery. Any advice please?
Before considering hemi thyroidectomy you need FULL thyroid and vitamin testing
Are you in the U.K.?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
I don’t understand why extensive blood tests are needed for making the decision about a hemi-thyroidectomy. The numbers may be different after the operation.
I’ve no personal experience of thyroidectomy, it seems the imperative is to relieve pressure in the neck. The consultant should be able to tell you what sort of nodule it is, how much it is likely to grow and the risks / harm it might cause. It’s true that damage to the vocal cords is a small possibility. I’ve seen a presentation on this and they emphasised the importance of getting a specialist surgeon with expertise in thyroidectomy.
Hopefully someone with personal experience will reply. This website btf-thyroid.org/thyroid-sur... has some useful information.
Thanks. Yes UK. We have a brilliant NHS but services are stretched so I haven't been offered any further blood tests.
I had a thyroidectomy and regretted not having a full thyroid panel prior to my surgery. Having a Partial or full removal of thyroid is not easy to deal with hormone wise and once those doctors get your lab numbers in the range (no matter where in the range) and how bad you feel they pretty much wash their hands of you and this is why it’s important to have a complete thyroid panel when your feeling well.
I had the op many years ago and so did a close friend all I can say was ours were a success as I too felt I was choking when lying on my back. The biopsy was negative but I was just glad to get the lump remove. The surgeon who did mine and my friends did a great job and left us with a very neat scar. Neither of us needed medication at the time. My friend still doesn’t but several years later I am on 100grms of Levothyroxine.
Thank you for the info and link. Yes I'm in the UK
Getting tested before operation can show what your levels are now
You might need levothyroxine after the operation…..or you might not
Helpful to see levels before operation and approx 3 months after
I had a blood test about 8 months ago. He said I won't need meds following surgery, but I guess they would test again. Thank you.
You might need meds, you might not. A colleague I worked with had a hemi-thyroidectomy and she didn't need any. It's better if you don't because you get the natural levels of T3 and T4 rather than just levothyroxine but sometimes the remaining thyroid isn't up to delivering the full amount.
Thank you. I think I need to do more research!
Did you have a biopsy? If you didn’t it’s hard to know what the nodule is? And whether you need to have a hemi -thyroidectomy.
A blood test as advised is also important too.
Thank you. They will only biopsy prior to surgery, they will not do it if I don't opt in.
Its not easy to make these decisions and i wish you all the best.
So you actually have no idea what is going on with that nodule and you could end up having a full thyroidectomy…. Its very important to get the full thyroid panel and 8 months ago isn’t sufficient you need it prior to surgery and If it were me I would pay out of pocket since doctors don’t do complete thyroid panel.
Hi, I'm in the same boat myself just that I do have hashimoto's and very symptomatic but only dips below their ranges so I'm classed as having normal thyroid function. If theres a way for you to see one of my previous questions about having the nodule removed there might be something useful in there. I've been waiting months to see an endocrinologist because I didnt like the idea of having it removed with half my thyroid if I cant get help with medication as it is. Nothing I've tried so far has reduced the size either 
mine is very big now. Quite the eye sore but I'm resolving myself to live with it because the potential of the problems it could cause me. But my surgeon did say that his patients that didnt have thyroid function problems all recovered well.... but I would say what they Class as "normal" might not be. So worth getting everything tested, TSH , T3, T4 and antibodies and posting them here. Might help your decision if you do actually have a thyroid function problem as you'll need an endo on hand after to make sure you get the medication if needed
Thank you very much. I have only had one lot of blood work done and that was around 8 months ago. I will ask some pertinent questions before my decision.
So what were results from 8 months ago
Just testing TSH is completely inadequate,
You need TSH, Ft4 and Ft3 and very important to test thyroid antibodies and all four vitamins too
Always test as early as possible in morning before eating or drinking anything other than water
They were 'normal' but I wasn't given the actual results
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Come back with new post once you get results
Hi, MaySylvia. I can only tell you about my experience which was 20 years ago. Like you I was not on any medication but had a right sided goitre. This was causing issues with breathing and swallowing. The associated discomfort meant surgery was required. Prior to the operation, the surgeon told me that he planned to do a hemi thyroidectomy but if there was any problem with the other side he would do a total thyroidectomy as he wasn't going to waken me up to ask my permission at that point. Did I consent? So I consented. And that is what happened. The goitre was actually caught behind muscle and was growing internally.
So I was put on thyroxine. I am fortunate that I have been well on thyroxine except for one stage when I was actually overmedicated. However, the goitre was so large that it had engulfed the parathyroid glands and so I also need to supplement calcium and vit D. This doesn't always happen but it is another complication you should be aware of. I had no problems with voice box or vocal chords.
I hope my story helps. It really depends on how serious the discomfort is. Maybe the nodule won't grow much more but I think it is more likely to keep increasing. That's a question for your consultant. Best wishes as you decide what to do.
Thank you very much Oatcake. Interesting to read of your experience.
To find the post Kaju refers to click on her name and you will see all her posts. In the one she refers to there is a link to thyroidpharmacist which is an interesting read. I'll try to copy the link but not sure how to do it!
thyroidpharmacist.com/artic....
I don't know if that will work!
I have 2 nodules, one of which was enlarging. I was considering removal of the affected thyroid. From what I understand, risks from the surgery are damage to the larynx and damage to the parathyroid glands. The risks are minimal with an experienced surgeon.
Like you, it's the swallowing issues which are quite like choking.
I was pushed towards RAI, but, here in the US, you're kind of on your own and I couldn't figure out how to avoid contact with my cat. Then, he was diagnosed with hyperthyroidism. We underwent RAI at the same time.
It's been 3 months and my swallowing issues are less severe and less frequent.
No advice I'm afraid, but if you don't mind my asking - how did you get the diagnosis and referral if thyroid levels were ok? Was there an obvious lump in your neck? I ask because I've had strange throat pressure/swallowing symptoms for 3 years now, was offered an endoscopy (haven't had due to pandemic) but I feel myself it's not a digestive issue and would prefer throat ultrasound.
I had a sort of tickle in my throat and kept going a bit hoarse. Then I noticed a swelling at the side of my Adams apple. I went to the doctors and they did some blood tests and sent me on a fast track two week wait to the hospital. I had a camera down my throat and they looked inside my nose too, then an ultrasound. I've since had a futher ultrasound 6 months later (the nodule had grown) and then a catch up with the surgeon. If you have symptoms please get checked out. Hopefully it will be ok. Im in the UK by the way.
The nodule has been scanned? but not biopsied? I think it should be biopsied if you wanted to wait & not operate. Seems wrong to me doctors are saying they will only biopsy prior to surgery. Ask them to explain why.
As you have a sensation of choking and reflux it’s likely the swelling is impacting on your breathing & swallowing and you will need to be treated.
The importance of full testing is firstly to make sure that there isn’t any issue contributing to the swelling. If abnormal levels or autoimmune was at work there is a remote possibility that correct treatment could resolve or reduce the issue & surgery not required. You also need a comparison for later reference.
In answer to your question what is RAI? It is Radioactive Iodine. This is a treatment which is given as a drink or pill. The iodine is mostly taken up by thyroid and the radiation slowly destroying the cells from within. (It can take many months for function to change).
This treatment is often first option for medics as it’s very easily administered & viewed as safer than surgery, it’s not always appropriate. You would need to isolate for a few weeks after treatment, so if you are around the young for example it would not be an option.
RAI would shrink the entire thyroid but not target the nodule, especially if the function is normal, the nodule shrinkage may only be slight. Surgery would completely remove it.
Thank you. I'm learning so much.
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Should I see a specialist for a thyroid nodule and symptoms?
