Just wondering is there a pattern to how the TSH performs following RAI treatment. I had RAI in 2008. Presently my TSH is very low/suppressed. As to be expected my Gp has reduced my levo from 100 to 75 mcg. And seeing Greygoose most comprehensive response to Supul , I know my thyroid has been mismanaged over the years , with my Gp following the see-saw treatment by only focusing on my TSH levels so I’m not getting anywhere.
My question is , is the TSH always suppressed following RAI treatment or would there be any residual thyroid gland hormone produced following RAI to make the pituatary respond with fluctuations of TSH? My TSH has been going up and down over the years after RAI. . But now it seems to be suppressed.
Recent readings are
Feb 2020 (medichecks)
TSH 0.24. (0.27-4.2)
T4 18.8 (12-22)
T3 3.63. (3.1-6.8)
March 2020 (GP)
TSH 0.13. (0.27-4.2)
T4 21.1. (12-22)
T3 4.9. (3.1-6.8)
June2020 ( medichecks)
TSH 0.47. (0.27-4.2)
Ft4 18.4. (12-22)
Ft3 4.11. ((3.1-6.8)
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Golli
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What vitamin supplements are you currently taking, if any?
Presumably you have Graves’ disease.....are you on strictly gluten free diet? Or tried it
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with Graves’ disease
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you so much for your quick response. Yes I’ve followed all the previous recommendations from the good advice on this site. Bloods taken afte 24 hr testing and early apt , though it’s always difficult to get an early Gp apt. And have had my vitamins checked by medichecks also and am supplementing with D 3+K2, also taking Igennus Vit Bcomplex with folate , also taking apple cider vinegar for low stomach acid. It’s early days so I hope if my vitamins are optimal things will improve. Am attempting gluten free , but finding it very difficult.
I’m curious about my nuked thyroid if there is any hormone left at this stage ,twelve years on . ( I was originally hyper, on carbimazole for about a year In 2007 before seeing an Endo who said RAI was best option for me as it was easier to treat under active thyroid!,! ). Shocking! I deeply regret not knowing more at the time , but foolishly trusted that the Endo knew best.
I presume it was Graves Disease but that was never mentioned at the time.
Unfortunately, my GP , Like most, is clueless.
I’m hoping to improve things myself, and if I fail and see that I’m a poor converter to T3 , I will request a endo referral , if I can locate a good one !
What do you think?
I appreciate all advice I can get . It’s such a head wreck when medics aren’t helping.
When taking any supplement that contains biotin (eg vitamin B complex) it's important to stop taking this a week before ALL blood tests as biotin can falsely affect test results
What were latest results and ranges on vitamin D folate ferritin and B12
Thank you Slow Dragon. How long should you leave between testing vitamin levels? I thought I should leave a couple of months before getting them tested again to give them a chance to improve??
Ferritin just ok (70 considered minimum ideal level)
Aim to keep at good levels by Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
I have Graves Disease and following RAI in 2005 I now manage lingering Graves, thyroid eye disease and hypothyroidism and am now self medicating and buying my own full spectrum thyroid hormone replacement.
I was only ever managed on TSH blood test results in primary care becoming very unwell around 8 years after the RAI treatment.
If I was to be well I would need 125 T4 daily but this gave me a TSH of 0.01 :
I was therefore dropped down to 100 T4 and would scrape into the bottom of this range and be more unwell but given anti depressants as some sort of consolation prize.
I do not know my TSH from before RAI but presume it would have been way down here then, as that's the nature of Graves Disease as the antibodies force down the TSH driving T4 and T3 up the ranges and causing symptoms. However my symptoms were just insomnia, exhaustion and dry gritty eyes and this hyper, overactivity one reads about didn't happen to me, as I think there are two main antibodies involved, one predominantly stimulates the thyroid whilst the other blocks, so guess I was/am with the latter.
The TSH is known to be an unreliable marker of anything in Graves patients and especially after RAI as the feedback loop is broken and this necessitates the doctor dosing and monitoring on T3 ad T4 blood test results with the intention for both these vital hormones to be in balance on about a 1/4 ratio T3/T4 and in the upper quadrants of the ranges.
I read primary hypothyroidism caused by RAI harder to treat :
I read RAI trashes vitamins and minerals :
It's a toxic substance that doesn't just go to your thyroid :
You will need to read up and become your own best advocate and if wasting your breath DIY as many of us have, resort to helping yourself. Graves is a poorly understood and badly treated autoimmune disease and doctors seem to be a very limited knowledge of the implications of thyroid AI disease and how to manage thyroid health issues post, so called, iodine 1-31 therapy treatment :
hope you are well. Thank you for your response, It’s so good to hear from you and find we are not alone , when we have this site and all the good information and advice that is given.
You’re right, I’ve come to the conclusion, that I have to take all this into my own hands to try and improve things ..... it’s daunting but I’m praying I will be able to find that rare medic who wii treat properly if I fail to improve things myself. ( How I wish I could turn back the clock and refuse the RAI treatment)
Thank you so much for vital info. I hope to follow those guidelines re optimising my vitamins ( finding gluten free trial very difficult though🙁)
Then I will definitely get referral for ‘good’ endo , if I can find one. I’ve already got name for one in my area Northern Ireland who prescribes T3. , from Dionne. So fingers crossed, I’ll get myself sorted. Thank you so much for all your help. (One final question please.... if I find gluten free diet helps, will I have to remain gluten free forever? 🙁
The trouble is that they have to stick to NHS guidelines because my GP said he would be struck off if he treated me. This is why this site exists and until they change there will always be sites like these unfortunately.
I used to work for NHS so I do know that big pharma is very powerful. I wish there was something we could do but unless the government steps in and changes things nothing will change. If you look on my profile and scroll down you will see I asked my local MP to ask Matt Hancock about this and you can see the letter I got in response.
I've only met one and that was after 11 years post RAI - the lady stated I couldn't have a trial of T3 as my TSH was suppressed at 0.01 :
I offered to decrease my T4 back down to 100 mcg daily, and make myself ill again, if this guaranteed me a trial of T3 as then my TSH would scrape into the bottom of the range and not be suppressed :
She said that I needed to reduce my T4 as I was overmedicated :
I said how can I be overmedicated with a T3 at just some 50% through the range :
No answers, and no answers to the three letters I sent over the following 6 months copied in to my doctor - asking for her to reconsider my case and keep me in her clinic so that at least I'd receive T3 and T4 blood tests and closer monitoring :
No answers from either party - so now I party by myself :
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