T4 'intolerance' and T3 treatment : Apologies for... - Thyroid UK

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T4 'intolerance' and T3 treatment

loueldhen profile image
14 Replies

Apologies for the long post and apologies for any inaccuracies - I'm an engineer not an endocrinologist.

One of the reasons I went to the BTA conference was to try to understand why there is such a difference of opinion between endocrinologists as to the benefits of T3. Fundamentally, the current understanding is that the thyroid generates mainly T4 and some T3 and that this T4 is used elsewhere (the brain, liver, kidneys, skin etc) to convert the T4 into T3 for use by the cells through deiodinisation using D1 and D2. Each cell can then regulate the amount of T3 it needs by deactivating the T3 with D3 and there are several feedback loops in the various processes. So T3 is generated from T4 throughout the body. Treating hypothyroidism with T4 is just replacing the T4 not being generated by the thyroid and physiologically our body can use the synthetic T4 to create the T3 it needs. Dosage can be managed by TSH or by adjusting dosage and monitoring side effects.

In taking T3, we bypass this mechanism and the cells don’t get the choice to decide on how much T3 they receive. T3 therefore operates more ‘like a drug’. The dose can be too high (and make you feel good – but not do you good) because T3 delivery (through a tablet, no matter how many times a day you split the dose) does not mimic the body’s processes. (So, if it is to be used, endocrinologists think some sort of slow release T3 needs to be available).

I take T3 only 40 mcg once/day between 2am and 6am. I do not feel as though I get ‘a hit’ after taking it, my heart rate is constant etc and I would say I am ‘normally’ tired at the end of the day (ie in the same way that someone who doesn’t take T3 would be). I hover at the bottom of the T3 range and feel ok. I have tried splitting the dose but to me it was just a pain without any benefit. So clearly my own experience leads me to disagree with the opinion that current T3 formulation should not be used. However, I do still have a thyroid so I am still producing some T4 although the level is low. Recovering with T3 assures Pamela Risk that people with no thyroid can do well on T3 only.

There was mention of ‘intolerance’ to T4 treatment (USA 20-30%, UK10-15%?, Malaysia 0%) but not much discussion. In private discussion, colours, fillers, dosage were mentioned. There is work on genetic issues DIO2 etc, thyroid transporters/receptors MCT8 etc, work is starting on gut interactions and also on feedback mechanisms. But most of these are seen as peripheral to the fundamental mechanism.

My main issue is that the current BTA guidelines are inadequate for GPs and endos, particularly when the patient does not respond well to T4 treatment. My GP wasted multiple blood tests, MRI, lumbar puncture, nerve tests, respiratory consultant, rheumatologist on my analysis until using my own initiative I stopped taking T4 and found I improved in two days.

One of the most useful documents I’ve found this week is buried on the BTF website btf-thyroid.org/images/docu...

The American Guidelines (about 80 pages with 688 references) are also a good read liebertpub.com/doi/full/10....

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14 Replies
jimh111 profile image
jimh111

These comments by the BTA are correct as far as they go. They ignore the fact that the deiodinase mechanisms do not always work and in these cases there is no alternative to supplying T3 medication. Comments about the dose being too high although sometimes correct are on the whole an expression of arrogance, not science. Do you remember who gave this talk?

loueldhen profile image
loueldhen in reply tojimh111

The post is an amalgam of the two days of talks. Only Prof Bianco mentioned intolerance openly in a talk and it didn’t lead to any discussion other than observed levels in different countries. I could give better examples of arrogance but I’m trying to help move forward not cause a riot!

Nickythepike profile image
Nickythepike

Afternoon,

Afternoon,

Yes your information sounds interesting on the BTA conference.

I think from reading a number of blogs ( I am new to blogging) that there is such a disparity in treatment of thyroid conditions. This including people being told to reduce mediaction when they feel well or when they feel unwell being told that the blood results are within parameters so no change.

Scottish Parliment have an ongoing petition to improve Thyroid care: Report on petition PE1463: Effective thyroid and adrenal testing, diagnosis and treatment. It will be interesting to see its progress over the next few months?

Also the issue of only one UK supplier of T3 has potentially reduced its useage in the UK. This had lead to the massive prices differences in T4 (£1.73ish) and T3 (£250ish) per pack of tablets as there is no competition. Hopefully the government will resolve this problem. Was it discussed at the BTA conference?

My hypothyroidism is treated with Levothyroxine 150mcg for 12 years. Not adjusted even though I have felt my symptoms gradually getting worse over the last 2 years. My last TSH is non existant 0.03, T4 18 and T3 1.4....I was about to get my Levo medications reduced by my GP when I produced private genetic DIO2 test results indicating that i am a poor converter or Heterozygous Variant Genotype TA. My Endocrinologist appointment is soon and I am hoping for a T3 prescription to add to my T4...if they deem it appropriate?

Interesting reading..

Thanks

Nicky

loueldhen profile image
loueldhen in reply toNickythepike

Pricing was discussed. They agreed to support the complaints. It has brought unprecedented attention to liothyronine prescribing.

Nickythepike profile image
Nickythepike

That is great to hear! Thanks

Newday64 profile image
Newday64

Thanks very much for the info. I can see why Drs want to treat people with t4 only. I wish it worked for me.

I was very sick on t4, but seem to be doing OK on t3 only. I do wonder what will happen when my thyroid packs in altogether - praying it won't!

I have to split my dose tho, as I feel hyper if I take it all in one go.

At least they are discussing t3 and acknowledge that t4 doesn't work for everyone. I find that encouraging!

Raincloud1 profile image
Raincloud1

I too had a dreadful reaction to levo and a private endo wrote to my gp and suggested I stop taking levo at once and start me on T3 only. I am now on my third week of T3 and the results are amazing,side effects of levo started to disappear within 36 hours and now feeling almost normal. (I had a total thyroidectomy 12 months ago) Do hope this info helps.

Raincloud1

greygoose profile image
greygoose

Well, just to muddy the waters - and to show how different we all are! - according to my first few months of labs, I converted levo perfectly. And yet, levo made me ill. And made me put on weight. And lose my hair. And, NDT was even worse! So, it really wasn't just a problem of conversion. I have no idea what it was.

So, eventually, I got onto T3 only, and got rid of a lot of symptoms, lost weight - hair didn't improve until I improved my ferritin, though. But, now, after quite a few years of T3 only, I've added in 25 mcg levo. And I find it quite acceptable. So, just goes to show...

But, according to diogenes, they under-estimate the amount of T3 made by the thyroid itself. And, that could be why some people can't convert enough levo to make them well.

Dawid86 profile image
Dawid86 in reply togreygoose

Please can you show me your results on levo .? because on t4/t3 it seems i convert very weel but i am bad..worse than t3 only BUT i wasnt enough good on t3 only...!My cortisol is ok.

All basic things are ok.

Seems like i was better on more t3 less t4 even if not enough good.

greygoose profile image
greygoose in reply toDawid86

I converted very well, too! But, I don't have my results to hand, sorry. Maybe you weren't good enough on T3 only because you weren't taking enough? I take 75 mcg.

Dawid86 profile image
Dawid86 in reply togreygoose

I take up to 112 mcg of cynomel t3 !! Then stayed at 80mcg BECAUSE high cortisol and weight loss!

Decreasing t3 and increasing t4 i was better than t3 only but not enough good .

About 37-31mcg t3 with 50-60 t4 seemed the best combo that allowed to me to have some workout and go out.. but most kf the day feeling so tired yet.

I decreasing t3 to 18 and increasing t4 to 75 and stayed ob it for 8 weeks.

Was the same about..

But because i felt i wasnt optimal i tried 12.5 t3 /100 t4 for 1month and was worse.

So,again i went back to 18/75 but this time it seemed to don't work "well"like before!

The only difference in exams was my ft4 little lower the second time on 18/75 with ft4 exactely the same!

So i tried to add t4...18/100 t4 for 4weeks and i noted some little improvements beetween the 9 and 14day on, then again worsening.....

So now i am thinking to decrease t4 and increase t3 again

However from 7 days i am back to 18/75 and i feel also worse than 18/100😅..and of corse Much worse than the first time i tried 18/75.

My ft3 is always very good near the top of the range or little above with every dosage i tried!

Als with just 12.5 t3 / 100 t4.

My cortisol on 18/75 was just lower at Afternoon..

My cortisol on 18/100 was veru high at noon😅

Taking thyroids at the same time,

6am am 12am.

6 @12.5/50

12am@6.25/25 or 50.

greygoose profile image
greygoose in reply toDawid86

I really think you ought to post your own question, rather than riding piggyback on someone else's thread. :) You give so much detail - which is good - but no hint of a timeline, which is not good. Perhaps you could get it all into chronological order, telling us how long you stayed on each dose, and post it on your own thread. Because it seems to me that there's been too much chopping and changing going on, and that is bad.

RedApple profile image
RedAppleAdministrator in reply toDawid86

Dawid86 , As greygoose has suggested, please start a new post of your own now. (You can copy and paste your comments from here to a new post if necessary).

I am closing this post now, because it's not fair to the original poster to have someone else's discussion on her three year old post :)

jimh111 profile image
jimh111

greygoose, if you have the results I'd be really interested in what your numbers were when you converted perfectly.

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