Hi everyone. I posted a couple of months ago about my endocrinologist referring me for radioactive iodine treatment for toxic nodule and what they deem subclinical hyperthyroidism. Your insights and knowledge were invaluable at that time, so thank you.
Well I held off on having RAI and did a lot more research. I found out about a treatment called radiofrequency ablation which can target the problem nodule and leave the rest of the thyroid in working order, thus negating the need for lifelong thyroxine. Made sense to me, so I got in touch with my endocrinologist who was more than helpful and had me referred under the NHS to one of the main guys who carries this out. It is only done one or two hospitals in England.
So I was booked for an ultrasound, FNA and discussion at the hospital yesterday. The doctor who has been doing these ablations for some five years now did the ultrasound and told me as he was doing it that unfortunately I have too many nodules and would not be a candidate for this treatment. He went into a bit more detail than that, but that was the upshot. I was very disappointed, but glad that I at least made the effort to investigate this procedure.
So it's back to the drawing board. My case is mild at the moment, so I have time to decide what the best course of action should be. You guys very helpfully pointed out to me that my TSH although low, was not completely suppressed and that my T3 and T4 were in normalish range. So I feel that time is on my side (the endocrinologist also pointed this out to me). I may eventually have RAI, but will wait and see how symptoms and thyroid numbers go.
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Silversnow
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Yes, there are many small nodules and a couple of bigger ones. He said he has seen this before and it generally doesn't lead to a good outcome with this treatment. Problems would keep occurring elsewhere leading to further treatments. If I have sight of the report I will be able to relate the issues more accurately.
You mention the option of a partial thyroidectomy. Interestingly he mentioned surgery and when I asked would RAI not be preferable he said - (and stressed it was only his opinion) that 'surgery in the right hands can be very successful and at least you are not ingesting radio active material into your body'. I thought the last bit was interesting as I keep reading from the experts that it is a small dose and nothing to be fearful about. But I must stress, this is his opinion.
My endocrinologist didn't seem to be too keen on going down the medication route. When I have my next appointment I will ask about it as a possible option also. I am a little hesitant myself about it due to (I know very low) possibility of liver damage, also white blood cell count.
Really interesting what he says about radio active material, & I imaging he mostly sees people seeking alternatives to RAI as most doctors stance is it’s a very safe easily administered treatment. They seem keen to arrange it. My own view is its an efficient method of reducing patient numbers, which have to be closely monitored if on carbimazole. My specialist literally said she didn’t want me “on her books” if I didn’t plan to have treatment soon. I’m monitored by GP as a consequence.
In your previous post there was mention of requesting investigation of pituitary issues as you have low TSH & lower in range FT4 & FT3. Was anything discussed about that? and have you had further testing eg antibodies & nutrients.
I’ve done quite a bit research on RFA previously and think I would be a candidate, but the hospitals which carry it out are located far away & I know I wouldn’t have means to travel for assessment, treatment & follow up if it was needed. Might be able to manage single visit.
Did they complete a FNA as part of assessment? and do you know - if you had been suitable for treatment would you have the treatment there & then or would you have had to return?
Yes, I remember someone mentioning investigation of pituitary issues. I have not discussed it with my endocrinologist but shall add it to my list of questions for my next appointment which won't be anytime soon. They have done several tests for antibodies in the past, the last one being in September last year. No issues there.
You have to complete two FNAs two to three weeks apart prior to RFA. If benign, then a further appointment is made to have the RFA.
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