I received RAI in 2010 for alleged nodules but then consultant thought I may have had Graves disease instead.
Over the last 13 years, I have had my levothyroxine reduced from 150 to 100 and I fear it will be reduced again. I am 55 years old.
My question is why does the doseage need reducing? Is it because the thyroid gland is recovering and hence producing thyroxine once more?
Cannot seem to find any information about it and have always battled with doctors who prescribe solely based on blood test numbers and ignore symptoms.
Has anyone else experienced similar? Thank you!
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mscomputertutor101
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Improving thyroid function is very unlikely. Although it is possible one of those alleged nodules have developed or grown.
The aim of RAI isn’t to entirely destroy thyroid function but reduce it so hyper isn’t possible. Theres isn’t an exact dose to for that so most become hypothyroid.
It’s more likely your dr is judging treatment based on TSH levels which are unreliable. What you need to know are your FT4 & FT3 levels.
Do you you access to your results eg online or obtain a printed copy with ranges.
Thank you for this. I know that my doc only tests TSH and T4. I have pushed before for T3 but that doesn't go down well. So much wonderful support and information on this forum - thank you.
As I understand things the dose of RAI not as accurate as one might think and ultimately patients taking this toxic substance become hypothyroid - with the thyroid and all it's contents slowly burnt out in situ.
If you did have Graves Disease - you still have Graves - as we are looking at an auto immune disease for which there is no cure -
and simply flipping the patient from hyper to hypo is seen by mainstream medical as a quick fix solution and discharge the patient back out into primary care where the NHS believes hypothyroidism is better treated.
The thyroid is a major gland responsible for full body synchronisation from your physical abilities through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Sadly doctors in primary care tend to treat on just a TSH reading which certainly complicates matter especially if with Graves as your TSH is likely not going to respond in the manner it's believed it should -
and you can face dose reductions and become very unwell- though told your TSH is in range so your thyroid function is fine and then offered antidepressants making you feel as though it's all in your head.
20 odd years ago doctors in primary care had all 3 thyroid hormone replacement treatment options in their box of tricks to treat with as they saw fit - sadly today they have only T4 with the secod line being the antidepressants :
You will need a referral to an endocrinologist for any other more expensive treatment option and it does appear to be a post code lottery decided by your CCG/ICB area as to whether to be supportive of the patient's needs or try and improve the NHS hospital balance sheet.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin+ a measue of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
Some people can get by on T4 - Levothyroxine - monotherapy.
Some people find that T4 seems to stop working as well as it once did - and find that by adding in a litle T3 - likely to replace that little bit lost when they had a thyroid - they can restore T3/T4 hormonal balance with a t3/T4 combo of medications.
Some find they can't tolerateT4 monotherapy and need to take T3 only - Liothyronine.
Whilst others find their health improved taking Natural Desiccated Thyroid which contains all the same known hormones as that of the thyroid gland and derived from pig thyroids dried and ground down into tablets referred to as grains.
T4 - Levothyroxine - is a pro-hormone and baically inert and a storage hormone which the body needs to be able to convert into T3 which is the active hormone that runs the body and said to be around 4 times more powerful than T4.
In order for T4 to work well and convert in the liver into T3 we need optimal core strength vitamins and minerals - especially those of ferritin, folate, B12 and vitamin D -
and when hypothyroid - with a slowed metabolism and likely low stomach acid - we need to supplement the above as necessary.
So, in short, we need to see a full throid blood test to include a TSH, T3 and T4 reading and range along along with the co-factors - that can impact the conversion of T4 into T3 - namely - antibodies, inflammation, and ferritin, folate, B12 and vitamin D in order to be able to help you further unravel where you are in the management of your thyroid health.
If your doctor is unable to run this blood test for you - there is a list of Private Blood compaies who can - full list on the Thyroid UK website - just start a new post with the results and ranges and we can talk you through what it all means and you next best steps back to better thyroid health.
On the day of the blood test you need a fasting early morning blood test and do not take your T4 thyroid hormone medication for the day until after blood draw - you will be ok - don't worry - and stop any supplements around a week before hand - so we measure what your body is holding on to rather than what you have just ingested.
I use Medichecks yearly and arrange a nurse home visit to draw my blood which is less stressful - though at an extra cost and the test is I think, called the Advance Thyroid blood test.
I have Graves and had RAI thyroid ablation back in 2005 and fell into this forum researching low ferritin some 8 years ago and thanks to this forum and a few books I've now managed to put myself back together again - details on my Profile page - just press the icon alongside my name.
Similarly you can read anybody's profile this way - and if you get lost - simply press the Profile icon top right on this screen - and this take you back to your Profile page and all you have ever written and all your replies.
There is a lot to take in and understand and initially it's a jigsaw with no picture, corners or sides, but stuff does sink in, even if dealing with that horrible brain fog.
Oh - no worries - there will be much more reading and you will become your on best advocate as we all have - keep asking questions - things will slowly fall into place.
It is so sad to read about so many other people in this forum who experience the same frustrations with prescribing and lack of knowledge from GPs.
What also makes a mockery of the way they prescribe here is when you compare the UK range of "acceptable" T4 and TSH values with the USA and even Europe. If I was in America, I would be on a higher dose of Levo. I guess that's when it starts to become all about money 🙄
I bet if you were in the US you would still be having the exact same problem… by the way Im thyroid less in the US and it’s been a horrendous experience.
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