Effects of long term use of T3? Advice please. - Thyroid UK

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Effects of long term use of T3? Advice please.

alex2015 profile image
23 Replies

Hello, I've just joined and am appalled that over ten years after my hypothyroidism was finally diagnosed there are STILL endocrinologists out there who poo-poo the fact that synthetic T4 does not work for everyone! If I hadn't encountered a decent GP, I would still be grossly overweight with the energy of a semi-comatose sloth. As I can't seem to find a consultant who prescribes T3, I was wondering if my consistently high T3 blood test readings will have any long term effects?

Many thanks.

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alex2015 profile image
alex2015
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23 Replies
greygoose profile image
greygoose

Hi alex, welcome to the group.

Well, there are going to be some on here that say 'yes' to that question. I'm going to say 'nobody really knows'.

But what exactly do you mean by 'high'? Top of the range? Over the top of the range? It always helps if you can post your latest labs when you ask a question - with the ranges - so that people can see exactly where you are and be better able to help you.

Also, if you want to reply to this response - or any response - just click on the red button marked 'reply', and the person will be notified.

As to endos and their silly ideas, the state of thyroid care and treatment is getting worse rather than better. They just aren't correctly educated anymore. And they're more interested in diabètes rather than thyroid, I'm afraid. That's why this forum - and many others like it - exist!

Hugs, Grey

alex2015 profile image
alex2015 in reply togreygoose

Hi Grey,

Thanks for your reply.

The test results are usually pretty consistent, except when I forget to take a dose. I'm on the maximum 60 mcg of lio per day and T3 is usually out of range about 15 or 16 I think, and T4 about 5 or 6. TSH was 4.34 on the last one but I fell sluggish and put on weight unless it hovers around 1. I asked for a print out of my test results from the surgery and was told it'd be £10? I wasn't charged at my last one, have they changed the rules?

Sorry to hear it's getting worse, re; endocrinologists, the last one I saw said he'd never heard of T4 intolerance, haha. Needless to say I didn't go again.

greygoose profile image
greygoose in reply toalex2015

£10 for how many pages??? They are not allowed to make a profit, but can charge a minimal sum for paper and ink. I think they are in breach of the rules! You need to keep your own records if you have any chance of improving your health.

And saying that your level is usually 15 or 16 is meaningless to me unless your tell me what the range is. :)

fortunata profile image
fortunata in reply toalex2015

Hi Alex2015.

I've had the same battle with drs and endos. It's taken me five years to convince them I don't convert T4 to T3 and that Levo doesn't work for me. I finally had a saliva test done

Privately that showed I have a conversion problem. I take 75mchs a day of T3 and I feel fab now! Xx

Clutter profile image
Clutter in reply toalex2015

Alex, Everything I've read recommends keeping FT3 within range. A lot of research says there is increased risk of osteoporosis &/or atrial fibrillation but a lot of it is extrapoloated from hyperthyroid studies and it may be different from medication induced high FT3 in hypothyroid patients.

It is extraordinary to see TSH 4.34 with high FT3. One would expect to see suppressed TSH.

When my FT3 was 8.4 (3.2-6.2) on 75mcg T4 + 40mcg T3 endo suggested reducing T4 or T3 "because we don't really know what the long term effects are". I hadn't felt overstimulated but had a slight hand tremor and was losing a lot of hair and nails were splitting and I have mild osteopenia and a slight heart arrythmia so I reduced T3 to 30mcg. I didn't feel hypo and guessed that FT3 was back in range when my hairloss stopped and nails improved 7 weeks later. 3 months after reducing dose FT3 was 4.5 24 hours after last dose which can apparently be extrapolated by +20% to give me an estimated normal circulating FT3 of 5.4.

HIFL profile image
HIFL

Since you liked the insulin resistance link, here's one for osteoporosis: tiredthyroid.com/osteoporos...

Bones, like blood sugar, are negatively affected if thyroid levels are too high or too low. Your SHBG would be good value to know, because that highly correlates with high T3 and osteoporosis. There are some other very specific osteo blood tests you can take that can examine your bone health: link.springer.com/article/1...

Jennyfluff profile image
Jennyfluff in reply toHIFL

Can I ask please then how do we dose?

If I take less than 4 grains of NDT, I get sluggish, tired, sleep 12hrs a day, gain ridiculous amounts of weight.

I know I have a upper range T3 although I haven't been tested recently in the last 6 months.

But I don't convert either so I have no idea where I should be at.

I feel great on 4 grains and my hydrocortisone.

I take the following also -

NAC

Delta fraction tocotreinols

R-Lipioc acid

Vitd/k2 drops (two hrs after NDT)

Solgar antioxidants.

I drink 2.5ltres water daily.

I finally feel good after years of struggle apart from my recent problem of ruptures and detachment of my retina.

Can I please ask should I stay put then and how often should I be tested for ranges?

I am finally losing weight I thought it would never happen and I was destined to be obese. I still have to watch my diet but I'm not gaining just because which is good for my cholesterol too.

Thank you for your link!!! HIFL

Thank you for your input too!

J xx

ging profile image
ging

Does anyone suffer from higher blood pressure since taking T3 ??

sulamaye profile image
sulamaye in reply toging

possibly I am on t3 only and am charting my BP rise over the past 6 months into graphs so I can see for sure whether there is a corrlelation. I have just switched from T3 only to NDT, but its swings an droundabouts, some symptoms like flushing have gone on NDT, but I am hypo compared to on T3, skin very dry, energy less, tired eyes etc, so am torn as to how to proceed. I suspect I may be T4 resistant or making it all in to Rt3 - despite being on Hydrocortisone - but am enjoying sleeping better on NDT. I have m.e too which compliccates everything as my body never does what is expected of it.

ging profile image
ging in reply tosulamaye

Thank you. Please see my letter below.

Ransom profile image
Ransom in reply tosulamaye

Sulamaye,

As you do best on T3 but can't handle the ups and downs, have y ou thought about getting a slow release T3 prescription?

sulamaye profile image
sulamaye in reply toRansom

It's not the ups and downs it's the symptoms that don't go on t3. I felt I needed to properly explore NDT before I can conclude that t3 is the best option, but sadly neither of them are solving my m.e

Ransom profile image
Ransom in reply tosulamaye

Oh I see. Hopefully you'll find NDT works out the longer you're on it - I dont' know the optimal testing period for that. If not, possibly the ratio of thyroid hormones in NDT isn't optimal for you. As I only use T4 and T3, those are the only ones I knoiw. I use slow release T3, and when I increased my T4 from 25mcg to 50mcg I improved. I use 80mcg of slow release T3 daily along with the T4. Hope this helps rather than confuses.

sulamaye profile image
sulamaye in reply toRansom

It's so complicated isn't it, and individual. It's always useful to hear what other people find works for them. Thanks

sulamaye profile image
sulamaye

I think when on T3 only blood tests really are useless because the T3 peaks an dtroughs so quickly it will all depend when you last took a dose. Do you monitor BP an dtemp and HR etc? I would say as long as they all seem good after a dose, especially BP, then go on what feels good and make sure you do load bearing exercise like walking etc if you are able. Sadly I struggle with that one as I have m.e complications.

Treepie profile image
Treepie

Do not know about 80's and 90's I had the same story a month ago from endo.

sulamaye profile image
sulamaye

Have to say I am amazed your TSH is not supressed on 60mcgs of T3 a day, mine was supressed when on T4 and T3 combo and T3 only 20mcgs per day for 13 years - this was before I got m.e. But the endo I saw three years ago for my m.e did a bone profile and there was nothing wrong with my bones even though my TSH had been supressed for so many years. But of course I now know the T3 wasn't really getting into my cells, another reason why blood tests are misleading in more complex cases.

rubyred profile image
rubyred in reply tosulamaye

Hi sulamaye, how did you find out that the T3 was not getting down to your cells. i ask becuase in order to feel well i take a large amount of T3 and wonder if the reason for this is because its not getting down to my cells.

sulamaye profile image
sulamaye in reply torubyred

I think when there is no T4 in the way there is nothing to stop the T3 getting to your cells as long as you have enough of it, but I guess there are also potential problems with transporters, as other things like oestrogen can compete for the proteins that transport thyroids round the body.

I decided to try T3 only because I had become so very ill and thought it was worth seeing what happened. The fact that as soon as I put some NDT into the mix - even half agrain - I started getting more hypo symptoms seemed to indicate to me that the T4 was poteentially causing a problem with the T3 I was taking getting into the cells as I was in total still taking teh same amount of T3, some synthetic and some NDT based.

penny profile image
penny

One of the problems with any correlation between thyroid and bone-thinning is that we are not cloned therefore there is no real control in any test. How do they know what ones bone density would have been like without taking thyroid hormones? They might have thinned anyway.

I must say that I trade any potential bone loss or arrhythmia against a decent life. I must say that unless I am in imminent danger of dropping dead from too much T3 I would rather be able to get up in the morning and function all day than not.

sulamaye profile image
sulamaye in reply topenny

I completely agree, it is quality of life v length and as the evidence is weak of bones, but ones own experience of being bed bound etc is strong, I choose the latter. I just wish it was the whole problem because then my life would be back to what it was four years ago.

ging profile image
ging

Though on 60mg of T3, I still haven't lost a lot of weight and my tummy is HUGE [I have also had Cushings disease ] My blood pressure which was always steady before T3 has rocketed so perhaps I should reduce the dosage. may have to take medication for BP which I do not relish.

sulamaye profile image
sulamaye in reply toging

i only lose weight, i have recently discovered, when taking a good bit of ndt. t3 doesnt touch that.

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