TSH after RAI treatment. : Just wondering is... - Thyroid UK

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TSH after RAI treatment.

Golli profile image
26 Replies

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 profile image
Golli
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26 Replies
SlowDragon profile image
SlowDragonAdministrator

Ft3 is too low in ALL these tests

Poor conversion of Ft4 to Ft3

Likely you have very low vitamin levels.

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

List of private testing options

thyroiduk.org/getting-a-dia...

Thyroid and vitamins

Medichecks Thyroid plus ultra vitamin (doesn’t include folate)

medichecks.com/products/thy...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Looking for Ft3 to be at least over 5 or possibly nearer 6 when adequately treated

SlowDragon profile image
SlowDragonAdministrator

Previous post from 5 months ago

healthunlocked.com/thyroidu....

Contains detailed recommendations on how to improve low B12 and folate

Importance of testing vitamin D

Getting Coeliac blood test and trialing absolutely strictly gluten free diet

Golli profile image
Golli in reply toSlowDragon

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.

Golli profile image
Golli in reply toGolli

Typo above,..... I mean ....bloods taken after fasting for 24 hrs

SlowDragon profile image
SlowDragonAdministrator in reply toGolli

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

Golli profile image
Golli in reply toSlowDragon

Haven’t had my Vitamin levels checked since 16 June. They were:

Vit D 86.5. (50-175)

Bit B12 active. 52.1. (37.5-187.5)

Folate serum 4.4 (3.89-19.45)

Ferritin 70.4. (13-250)

SlowDragon profile image
SlowDragonAdministrator in reply toGolli

Clearly these results far too long ago to be relevant

B12 and folate were both too low

Active B12 needs to be over 70

Folate over 10

Getting retested ASAP ...privately if necessary

SlowDragon profile image
SlowDragonAdministrator in reply toGolli

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Retest annually

Golli profile image
Golli in reply toSlowDragon

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??

SlowDragon profile image
SlowDragonAdministrator in reply toGolli

Sorry I miss read that as 2016

Not June 16 !

SlowDragon profile image
SlowDragonAdministrator in reply toGolli

What vitamin supplements are you currently taking to improve low folate and B12

Golli profile image
Golli in reply toSlowDragon

Ah no worries , I’ll give them a few months before retesting, should I?

I’m on Igennes SuperB-Complex which has folate 400ug per table twice daily . Is this enough?

SlowDragon profile image
SlowDragonAdministrator in reply toGolli

Remember to stop taking this a week before ALL Blood Tests

SlowDragon profile image
SlowDragonAdministrator in reply toGolli

Are you supplementing vitamin D?

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

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

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.

pennyannie profile image
pennyannie

Hey there again Golli

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 :

Golli profile image
Golli in reply topennyannie

Hi Pennieanne,

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)

Keep well.

SlowDragon profile image
SlowDragonAdministrator in reply toGolli

Once all four vitamins are optimal and trialing strictly gluten free diet...if Ft3 remains low (likely)

You will need addition of small doses of T3 alongside levothyroxine

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

tukadmin@thyroiduk.org

Golli profile image
Golli in reply toSlowDragon

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? 🙁

SlowDragon profile image
SlowDragonAdministrator in reply toGolli

Probably Yes....but it gets easier with practice

I won’t dream of choosing anything with gluten in now

On rare times I have accidentally got gluten, very unwell for 5-10 days

In my own case I consider it a Small price for such dramatic improvements

pennyannie profile image
pennyannie in reply toGolli

Ditto !!

Start reading and gaining confidence in yourself - you're not alone :

Golli profile image
Golli in reply topennyannie

How lovely to get your supportive words. Thank you.

Isn’t it shocking those medics who are supposed to be supporting us and are paid a good wage are few and far between. 🙁

Lora7again profile image
Lora7again in reply toGolli

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.

Golli profile image
Golli in reply toLora7again

It’s scandalous! Things will have to change , but as usual , “ money is the root of all evil “

Lora7again profile image
Lora7again in reply toGolli

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.

pennyannie profile image
pennyannie in reply toGolli

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 :

Golli profile image
Golli in reply topennyannie

Good for you and your persistence.

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