Hi, I'm after some advice. About six years ago I discovered a Goitre in my neck, my GP ran bloods and I was very overty thyrotoxic. Following referal to Endocrinology and every test under the sun, they decided to do Radioactive Iodine. However before it was started I dropped into a sub-clincal hyperthyroid state, where I have remained since until Jan 2025 when my free T4 was slighlty out of range.
The Endocrinologist then refered me to a surgeon for removal of the right sided goitre, stating it was better for my long term health. However on the next set of bloods the free T4 was back in range. I'm really undecided what to do and worry about the risk of becoming Hypo and needing Levothyroxine ( 20% risk ) from the surgery. I have no symptoms at all from the goitre or anything to do with it.
My TSH remains at less than 0.05 mmols which is what they seem concerned about.
I'm interested if anyone has been in a similar position, had the surgery and had a good outcome or put the surgery off and regretted it. I think with such a low TSH there is a risk of becoming overtly hpyerthyroid again but currently everything is fine. Adivice please as I don't know if I should go with the Dr's and surgeon's plan. Thanks
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fastdog123
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Hi SlowDragon, Originally I had all of those tests and had a scan with a gamma camera also and the ultrasound. Originally my bloods were very overtly hyperthyroid but setlled down into this sub clinical hyperthyroid state before I started the RAI and didin't change until thIs slight blip in January then back to sub clinical.
The Endocrinologist said all the auto immunne tests were negative
Jan 2025 bloods
TSH <0.05 Range 0.3-4.5
Free Thyroxine 25.9pmol/l range 10.0 - 22.0
Free T3 6.5 pmol/l range 3.1 - 6.8
April bloods
TSH < 0.05 range 0.3 - 4.5
Free thyroxine 16.4 pmol/l range 10.0- 22.0
I haven;t got the recent T3 result but it was in range.
I'm female, aged 62, only on HRT. I take vit D in the winter months and have done for about 10 years, I also take a multi vit daily and Magnesium at night.
I'm just concerned about the surgery and worry about going hypothyroid when i currenlty have no problems
Have you had ultrasound or CT uptake scan to confirm if you have an autonomously hyper functioning nodule?
Have you had any thyroid antibodies tested to see if an autoimmune condition affecting your thyroid?
TSH can be unreliable for many reason what have FT4 & the active FT3 levels been like?
The TSH is a pituitary hormone which signals the thyroid. The pituitary “thinks” your thyroid levels are “high” so lowers the signal to lower production.
Low TSH isn’t an issue / cause of symptoms, its really about what the FT4 & FT3 are doing.
So treating your thyroid because the TSH is low isn’t always appropriate. Unless your FT4 & / of FT3 are consistent very high or over range & investigated as to why, basing decision on TSH result is not ideal.
My thyroid levels were sub clinic (low TSH in range, but gradually rising FT4 & FT3) for several years. Drs kept missing follow up / missing off the right tests.
Once my FT4 & FT3 were high I was given carbimazole an antithyroid which lowered FT4 & FT3 my TSH took years to start responding though.
Why have doctors suggested irreversible treatments over medication which can be adjusted & stopped if necessary?
Get a copy of test result & post exact results on here. Be sure to include lab range as ranges vary between labs.
If you are not suffering any symptoms and your breathing and swallowing not impacted by the goitre the choice is yours -
Personally I believe mainstream medical believe hypothyroid much more easily treated than hyperthyroid - probably because the treatment for hypothyroidism is with your primary care provider and the hospital do not get involved in trying to restore your thyroid function.
The thyroid is a major gland responsible for full body synchronisation from your physicality and stamina through to your mental, emotional, psychological and spiritual well being - your inner central heating system and your metabolism.
You can liken the thyroid to a car gear box - or maybe the conductor of an orchestra - needing fine tuning and several checks and balances to work smoothly and harmoniously.
We have some research on RAI thyroid ablation so you might find that of interest :-
It reads as when ' overtly hyperthyroid ' six years ago you were symptom free and it seems all this is happening just because of some fluctuating TSH blood tests results.
Should you have symptoms and actually become hyperthyroid with your T3 and T4 going over range - can you not be treated with an Anti Thyroid drug - which is used to semi-block thyroid hormone replacement and prescribed when there is hyperthyroidism.
Thereby keeping your thyroid - and not having definitive treatment -
as you clearly are undecided and not comfortable taking this forward.
Treatment for Primary Hypothyroidism is not simple nor easy - without a thyroid it can take much time and trying different thyroid hormone replacement options that may not be readily available on the NHS -
A fully functioning working thyroid would be supporting you on a daily basis with trace element of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg -
with T3 being the active hormone that runs the body and said to be around 4 x more powerful than T4 .
Currently the NHS routinely only prescribes T4 - Levothroxine - the cheapest option and should you not find your health and well being restored on T4 - you will need to be ' assessed ' by an NHS endo for any other treatment option.
Natural Desiccated Thyroid - the most expensive treatment option - is now blacklisted on the NHS to new patients and T3 has become something of a post code lottery with some ICB areas financially restricting hospitals with endocrinology teams somewhat constrained in their patient treatment plans.
Obviously if you go Privately all treatment options are readily available for you to try .
I think I agree with you about the hospital wanting an easier solution, the doctor said if I go under my GP and treat me with a small amount of Levothyroxine. I know from a friend and my aunt, who were hypothyroid, that it's never quite as easy as that.
I think I'll just wait and see and as long as I have no symptoms just carry on monitoring the situation.
I've looked back on the results I can find. My FT4 and FT3 have varied from mid range to the top of the range.
They Endocrinologists, seem to think the side effects will be less from the surgery rather than the RAI, which has a greater risk of me going hypothyroid. The only time Carbimazole was mentioned was when i was overtly thyrotoxic in August 2019. Thats when I had all the scans and uptake test. The right side had increased uptake with supression of the rest of the gland. The nodule is 4cm.
Dexa scan was carried out in 2020 and normal.
My last two results are in the post to SlowDragon.
I have another Endo app in early August, which will be before the surgery due to waiting list, I think I'll discuss leaving the surgery for the time being as I'm 62 and not showing any problems with heart or Oesteoprosis which I think are the main long term worries of being sub clinical.
I am in limbo, much as you. However, my thyroid journey started with hypothyroid for about 20, years discovered at a routine lupus rheumatology appointment.
Then several years ago the ranges were stupidly out of range and my gp just did not know how to deal with it. At one point I was on 25mcg levo daily. I requested an appointment with an endocrinologist who sent a letter replying I had thyrotosis and had been since my diagnosis all those years ago! He did not suggest treatment and refused to give me an appointment, so I was just left, feeling absolutely dreadful. Even my gp was appalled and at a loss of what to do next.
I asked my gp for a second opinion at another hospital and it was discovered I had become hyperthyroid. Apparently this is very unusual, most go from hyper to hypo. I have the antibodies for both Hashimotos and Graves disease and suddenly I was being shifted through the hospital systems. I was very tachycardic, my osteoporosis was worsening, my hair falling out, and my voice was hoarse and I had choking episodes.
I had treatment with PTU which was dropped after my liver complained and I developed vasculitis. Meanwhile I keep being asked to have my thyroid removed, which I was and still am refusing. I cannot have the RAI as my husband is my carer and he would be at risk from my radiation! I always think how that is so odd, if there is so much radiation it is dangerous for my husband to be around me, but how come it is okay for me?
My last list of tests seem to show my thyroid is slowly changing again. I finally have a proper reading on TSH of 0.005, which I'm told is good! I am taking carbimazole 5mg just twice a week, which seems to keep things steady.
If my results change and I become hypothyroid, I will be under gp guidance again. I still have a goiture with nodules, my heart rate has steadied, although my weight is creeping up again. I feel I should always be under the endo, as most gps know very little about thyroid, but the endo insists if I am not having the removal, I have no need to see her.
Strangely I feel better being hyperthyroid, more energy, better mood and generally well, although that is diminishing as my tests move towards hypothyroid. I am glad I insisted on waiting to make a choice about the removal of my thyroid. I am just waiting now to see if I become hyper or hypo and if my thyroid will always swing.
Unless you are feeling extremely ill and your endo absolutely insists there is no other treatment for you, I would take the watch and wait approach.
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