I had a partial thyroidectomy in approx 2005 when I was 12, removing a rapidly growing benign nodule on my right side. I've been fine for years, and my TSH levels have apparently been within normal range when tested since.
However since 2017 my remaining side has rapidly grown, and I now have a multinodular goitre which my consultant said is approx 4-5cm. While he has assured me this is not cancerous according to my ultrasound he is keen to do something about it- partly due to aesthetics but also because it could start to compress my neck. (Apparently laser therapy won't work as my nodule is solid)
He was keen for surgery to remove my whole thyroid, however I am very concerned about being on medication for the rest of my life (I have a bit of a chaotic lifestyle) also he is more of a diabetes specialist so I'm worried he may not have as much of an insight. Currently I'm able to maintain a busy work and social life so don't want to go through the trial of trying different doses e.t.c
He suggested radioactive therapy as an alternative as there's less chance of me having to take medication. While part of me does want to sort out the massive lump, I am wondering if its worth it and the best course to take- I am also concerned about how this could affect fertility (I'm 28) and risk of cancers in future. I would be keen to get a second opinion from a thyroid specialist, but don't know where to start and there seems to be loads whenever I look it up!
Has anybody got any advice on getting a second opinion? Or have you had radioactive therapy for a goiter and was it worth it?
Thanks!
p.s I have also just ordered thyroid for dummies to understand this all a bit better, unless anyone has any better resource recommendations
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BeCaw93
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RAI is not very good at targeting a nodule (unless nodule is hyper functioning then, the Radioactive iodine does get taken up by the nodule) . There will be some nodule shrinkage but when the thyroid gland is functioning normally the entire gland will be reduced. This is why it results in hypothyroidism.
What are your current results? TSH. FT4 & FT3. Before considering any further treatment you need to know how your levels are now. Firstly it will show how “in range” they are and if there is a problem with levels. secondly it will show where your levels need to be after treatment.
I know of 2 NHS hospital offering Radio Frequency Ablation on thyroid nodules. I know other members successfully getting a referral after initial getting fobbed off.
Provided the nodule is benign and not growing behind collar bone this could be a possibility. If the nodule was a fluid filled cyst it could be drained (they commonly refill). but they don’t use lasers for that. So I’m not sure what the justification for your specialist comment was.
There is also Ethanol Ablation for nodules, both procedures require percutaneous needles to reach the nodule.
I am concerned about this, is he an Endocrinologist specialising in Diabetes? Has he done a needle biopsy to investigate whether it is cancerous or relying on a scan? Even that is not foolproof. Did they do a biopsy when you had a partial thyroidectomy? Is he a surgeon as well or who did your operation? I have had a partial and full thyroidectomy plus radium treatment but that was for cancer so I can't advise. There are other treatments available, ask to be referred to someone else for a second opinion as this is an important step that will affect your whole life.
My operation was done in London many years go, I'm not sure by who but I can find out via my parents. Essentially I had lots of input as a child and then when I turned 14/15 no doctor seemed interested anymore. I've only started getting yearly blood results for the past few years!
He seems to be a diabetes specialist as oppose to thyroid, and is the only endocrinology consultant at my hospital. I have never had a biopsy, only told its 100% not cancer from the two ultrasounds I've had (frustratingly I work at the hospital but can't view my own records). I'm not sure if I've ever had my full f3 e.t.c levels measured either, I've just always been told I'm in 'normal' range and have never been given any numbers- they may well have just been looking at TSH.
Very interesting to hear regarding having to take medication after radiation, he gave the impression there was only a 10% chance this could happen (as oppose to 80-90% with surgery) which is why I was going to go ahead with this option.
I was the one who brought up laser ablation in my appointment, he brushed it off as my lump being multinodular and solid (although research articles I found today suggested it can be used for solid lumps?)
What is the best way of getting a second opinion? Do I just google and find someone with decent reviews? Any particular sites I should use? - Sorry I'm very new to all this!
Before thinking about a second opinion, i strongly recommend you stick around here for a while and do lots more research yourself so that you have your own fully informed opinion to compare your 'second opinion' against .
Your first one is telling you utter rubbish if he thinks there is only a 10% chance of becoming hypo and needing Levo for life after RAI treatment ...it might take a few years to get there, but that 's almost certainly where you'll end up.
NHS endo's are pretty much instructed to persuade everyone to have RAI over surgery because its the most cost effective solution for their budget , for example .. it's more cost effective than keeping someone on the endocrinologists list who could perfectly well wait for remission from graves disease by staying on antithyroid drugs and be monitored with blood tests ., but instead they tell them they should have RAI "because it's the preferred treatment"....... so i'm afraid you can't take for granted that everything you are being told is in your best interests .
By the way , do you know you have a legal right to see your test results / records? there are a couple of hoops to jump through first , such as setting up enhanced access , or doing an SAR request, for historic records, but getting your actual results can usually be done once you know how .... and getting the most recent blood test results is just a matter of asking to have a printed copy 'for your records' as long as the GP has seen them first, and not getting fobbed off by receptionists saying "i'm not allowed to " ... they are allowed .
I don't know very much about it or if it would be suitable for you , but there is this new thing called Radio Frequency Ablation, which does genuinely seem to have potential to minimise the risk of needing Levo afterwards ( PurpleNails mentions in her reply above )... it's only done at a couple of hospitals i think ,but in terms of who to ask for a second opinion ~ i'd be finding out which hospitals do it and try to talk to someone there, so at least you know you're talking to someone who is aware of it as a possible option.
Someone on here has collected some info about it, but i can't remember if it's PurpleNails or someone else . You could try the 'search' box , but it's sometimes a bit rubbish.
one last thought ... (and i will admit, it's biased) ... speaking as someone who's been on Levo for 20 yrs due to autoimmune hypothyroidism, if i could swap my life since i went hypo , for the active busy life i had before and have a massive ugly uncomfortable lump on my neck instead ...... i'd bite your hand off.
If you are currently very well and can live life as you choose , i'd think very very carefully before letting anyone do anything to your thyroid unless it is a matter of your imminent safety.
Of course , you might well be one of those who does just fine on Levo once they get the dose right .... but if you want to know the % risk's ... at least 15% of those on Levo don't do so well at all , and they end up on sites like this ,looking for how to get their life back once their GP has said 'you're treated now , next patient please' .
I had RAI in 1999 and was told that it would "reduce the size of my thyroid" which was overactive. 3 months later I was so tired and foggy I didn't know what to do with myself. I seem to recall I saw the endocrinologist who said, "ah yes, sometimes your thyroid stops working" or words to that effect. 23 years on and I still have loads of issues to deal with connected to a non functioning thyroid. Sure I take thyroxine but the tiredness, brain fog and weight gain have never gone away. I used to be slim, healthy and active but not any more. So, if there's any way to avoid the RAI I'd definitely go there!
I had RAI in 2005 and became very unwell around 8 years later.
Primary hypothyroidism caused by RAI is more difficult to treat :
RAI trashes your vitamins and minerals :
Ferritin, folate, B12 and vitamin D need to be maintained at optimal levels for any thyroid hormone replacement to work.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin pus a measure of T3 at around 10 mg plus a measure of T4 at around 100 mcg.
T 4 is a storage hormone hormone that your body needs to be able to convert to T3 - the active hormone that runs the body and T3 is said to be around 4 time more powerful than T4.
I now self medicate and have my life back including my brain, and you can likely do the same but you do need to start your own post and take some steps of your own back to better health.
I would think very carefully about RAI as from what I've read it's dose and consequences are not as exacting you may have been led to believe.
I became very ill around 8 years after ingesting RAI with, I believe, he consequences of ingesting this toxic substance which is known t be taken up, to a lesser extent by other glands and organs in the body.
I have had RA for Graves Disease back in 2005 and for me, the consequence worse than my initial symptoms for Graves Disease.
Please do your research and look at alternatives :
RAI is a quick fix, and just taking a pill sounds a lot safer than surgery but it's not that simple.
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