I've posted a couple of times before about my recent thyroid journey, I posted my blood results recently too. I had a thyroid uptake scan last week and I have now been diagnosed with a hyperfunctioning toxic nodule, not graves' as initially thought. I spoke to the Nuclear Medicine consultant on the day who wanted to see me after my scan. He told me my only real options are full thyroidectomy (I had a hemi in May 2021 due to suspicious nodule on the other side, I had this nodule then but it was not removed) or RAI. I wish I had asked to take a photo of the scan as it was really interesting to see. I did have new bloods at this appointment but haven't seen the blood results yet.
I really do not like the sound of RAI treatment. I work full time as a dental nurse so I am around children a lot of the day and have the possibility of being around pregnant people too. I didn't ask how much time I would likely need off work because I forgot to ask but I worry it would be longer than usual due to my occupation.
Although surgery is my preferred option, no one really wants surgery but I have done it once so I know I can do it again. He said the surgeons may not want to operate again though as I have a keloid scar from my previous hemi, i am prone to scarring so It wouldn't bother me if I had another keloid but it could dissuade them from going ahead with that.
Has anyone else had a flare up of another nodule years after a hemithyroidectomy and what treatment did you have? I have read up about ablation treatment but don't believe this would be an option for me because they do not provide it at my hospital and others aren't taking referrals.
I want to go into my review appointment with the Endocrinologist with an open mind and not adverse to treatment.
Thank you 🙂
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taking antithyroid drugs (Carbomazole or PTU )long term is also an option that suits some people with hyper functioning nodules , although endocrinologists will not usually offer this information to patients willingly ... the people who go this route have usually got there by declining surgery / RAI and leaving the medics with no other choice but to continue prescribing Carbimazole / PTU
PurpleNails has taken low dose antithyroid drugs for several years for this purpose i believe
Thank you for the reply. Medication hasn't been mentioned to me as an option so far. The endo mentioned it a while back but as i'm 38 and haven't had any children yet he was reluctant to put me on it. I will keep it in mind for my appointment though.
this is worth a read : healthunlocked.com/thyroidu.... a-study-supporting-long-term-antithyroid-drug-usage-useful-for-any-patients-feeling-pushed-into-having-rai-thyroidectomy.
endocrinologists will usually push for definitive treatment with RAI / or surgery and not mention the possibility of long term Antithyroid medication, they will often say 'RAI is the preferred option' , but this does not mean it is preferred by most patients , it is preferred by N.I.C.E for reasons of economics / efficiency because it's simple and quick to administer and gets people quickly off the ( expensive) endocrinology books and onto the ( cheaper) GP's list to monitor them on levothyroxine for life ( levo costs pennies and routinely only has one blood test a year) .
If people stay on long term antithyroid drugs endo's are supposed to keep monitoring them more regularly , which obviously has impacts on their already long waiting lists and their budget .So don't be surprised if endo gives you the firm impression it's not an option ,, but it can be a very suitable option for some . .So don't let yourself be railroaded into having surgery or RAI until it is your fully informed/ researched choice to have it .
p.s when discussing risks they will point out that carbimazole / PTU have risks of serious adverse reaction ( liver) .... they do have these risks it's true , but these risks don't increase if you stay on it longer .
The risk they usually fail to mention is this .. it's an accepted fact that approx 15% (minimum) of patients on levo for hypothyroidism do not do very well at all, have poor quality of life , and NHS often refuses them the option of trying combination therapy with Levo and T3 to try and improve their unresolved hypo symptoms.
so before agreeing to let them remove your own source of ready made T3, it's worth a conversation with your endo about their attitude to offering combination therapy if needed ( and if it is even allowed to be prescribed in your area,,, it's a postcode lottery, and very dependant on local endo's attitudes)
That's great information, thank you. I live in an area where I believe T3 is available and there is an Endo in the hospital i'm being seen in that prescribes T3 although I am not under him. I have lots of information to take away and digest now before my appointment. Thank you
If wanting to have children it is RAI that is not recommended -
Anti Thyroid drugs are perfectly safe long term and if found to be pregnant and / or in the 1st trimester the AT drug - Propylthiouracil - PTU -is prescribed.
The cleanest option - if there has to be definitive treatment - is to have surgery.
RAI sounds simply - that will slowly burn out the remainder of your thyroid in situ - but which is a toxic substance and known to be taken up - to a lesser extent - by other glands and organs in the body.
Women of child bearing years are not offered RAI ?
We do now have some research you might like to consider :-
Your T4 is very low in the range and your T3/T4 inverted - and this alone puts undue pressure on your body -
after your hemi-thyroidectomy - were you ever offered T4 - thyroid hormone replacement as imagine you were then likely with some symptoms of hypothyroidism.
I believe PurpleNails has a nodule and controls her symptoms with an Anti Thyroid drug ?
I've read of some having RFA - radio frequency ablation and yes it's not widely available -
but at least you'll get to keep part of your thyroid which is a major gland and responsible for the full synchronisation of your body from your physical ability and stamina through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Without a thyroid is not an easy road for many - as routinely the NHS first line treatment is T4 only medication and should you not feel fully recovered you will need to assessed by an NHS endocrinologist for any other thyroid hormone replacement option.
It is not a done deal as it does appear throughout the country that there are ICB areas where there are restrictions on prescribing T3 and especially NDT - and you may find you need to go privately to be offered full spectrum thyroid hormone replacement.
Having had RAI thyroid ablation for Graves back in 2005 - I think I had to stay away from my young nieces for around a month ?
Thank you for your detailed response. I was never offered T4 following the hemi, my bloods "returned to normal" but were at the borderline of normal. I don't feel great in myself at the moment, lots of symptoms like tremors, heat intolerance, hair loss, poor sleep and fatigue, to name but a few, so I would definitely like to have some sort of definitive treatment.
With regards to T3 I believe it is available in my area and one of the Endo's in the hospital i'm being seen in does prescribe it.
I will read the paper you have linked to help me make a more informed decision. It may get taken out of my hands and I'll be told I can't have a certain treatment but I want to go in armed with all the information I can have.
I have read with RAI it's around a month to be around children so although I have good sickness benefits with my company I really would prefer not to take that amount of time off work.
I will ask Endo about this on Wednesday, initially he said he thought I had Graves' because of the low T4 and high T3 but he may have a different opinion this week after my uptake scan last week. Can you be hypo with a low TSH?
Yes - Graves antibodies distort the TSH readings and the TSH not a reliable measure of anything if with Graves Disease -
Graves can present as either blocking or stimulating - and liable to flip from one set of symptoms to the other - as these 2 extremes of symptoms vie for control of your thyroid - and there can also periods of relative calm where these blocking and stimulating antibodies cancel each other out.
All the AT dug does is ' buy you time ' while we wait for your immune system to calm back down again -
to rule in Graves you need a positive and over range blood test for the TSH Thyroid Receptor AB - sometimes written as a TSI - a thyroid stimulating immunoglobulin - or a TRab - a thyroid blocking antibody - with a range and or cut off number - and the medical evidence - of this poorly understood and badly treated AI disease.
Presumably if he thought you had Graves he would have ran the blood test - if it hadn't already been run by the Laboratory.
not everybody experiences high over range levels which cause hyper type symptoms and the most well documented and understood symptoms -
others experience lower T3 and T4 levels which can be inverted with ' hypo ' type symptoms and a pressure build within the body as there isn't enough T4 circulating in the blood to sustain the higher T3 level - and a bit like being stuck in a neutral gear -
You sound more comfortable with surgery than what the doctors will be recommending (RAI).
Doctors are usually quick to prescribe carbimazole at least in the short term,as Drs like to see TSH in range & will often lower in range FT4 & FT3 levels just to see the TSH rise. In fact often they want the TSH well in range because then there’s lots of room for it to drop again & they have less to monitor.
Autoimmune has potential to resolve but nodules generally don’t, & definitive treatment is usually suggested early on. I was offered RAI once nodule confirmed, but I delayed RAI indefinitely & remain on carbimazole. At one stage I was discharged to GP to monitoring, but they were quite hopeless. They never recalled me, I had to remind when test due & they even refused to increase carbimazole when my FT4 & FT3 were borderline high because they were “in range”. Even though a specialist letter recommended they aim to be approx mid range.
The dr does bring up RAI at appointments but they accept I intend to remain on carbimazole & agree there is less controversy / concern about long term antithyroid then there used to be.
Your FT3 is likely more elevated than It should be this is lowering your TSH. The FT4 is likely to follow. This might take years to reach abnormal as it did for me, but it may progress quicker.
l-cartinine might help. I found l-cartinine lowered FT3.
Hi PurpleNails thanks for taking the time to reply. I really don't like the sound of RAI, the isolation, the extended time away from work and the possibility of the toxic nodule returning in the future, not to mention the worry that the treatment can cause further issues down the line, i've read cancer is at increased risk with this. I haven't been offered medication at all yet but my appointment is tomorrow morning so may be different when I see him in person. It is helpful to hear that you have managed to advocate for yourself and not be pushed into treatment you'd rather not have.
I haven't heard of I-cartinine before so will look that up. Thank you
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