And did you end up taking T3 on its own? How does a person who T4 doesn't convert for medicate? Does that mean then that all the T4 ends up making you hyper?
Did anyone else not suit T4? Like it wasn't abl... - Thyroid UK
Did anyone else not suit T4? Like it wasn't able to covert to T3?
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aholoo
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SlowDragonAdministrator
Did you get full thyroid and vitamin testing done as recommended on previous post
healthunlocked.com/thyroidu...
Things that can help
Trying different brands levothyroxine
Which brands of levothyroxine have you tried
Getting vitamin levels tested and optimal
Getting coeliac blood test done before trying Strictly gluten free diet
Apparently over 80%+ of hypos do perfectly happily on levo-only. This forum necessarily self-selects the minority, so lots of us here are on combo levo/lio or lio only or NDT,
But you didn't actually reply to any of the the replies to your first post.
It would be helpful if you can post your last blood results (plus relate lab ranges); tell us how long you've been on levo; what brand and how much you take etc etc so people here can help you
Wow. What a friendly forum.
To answer your questions:
Did anyone else not suit T4?
Well, T4 didn't suit me. It made me feel bad. Difficult to describe, but I was happier not taking it.
Like it wasn't able to covert to T3?
It wasn't a question of converting, I converted perfectly well, according to my labs. My body just didn't like the T4. And, I've tried several different brands but couldn't get on with any of them.
And did you end up taking T3 on its own?
Yes, after trying T4 only, T4+T3, NDT, the only place to go was T3 only. And, that felt much, much better.
How does a person who T4 doesn't convert for medicate?
Don't understand that question.
Does that mean then that all the T4 ends up making you hyper?
No, it can't do that. If you are hypo, it's physically impossible to become hyper - i.e. the thyroid producing too much hormone. You could be over-medicated but you're only over-medicated if your FT3 is well over-range. Have you ever had your FT3 tested?
What happens to the T4 is you can't convert it to T3 is that a lot of it is converted to rT3, when it gets too high, rT3 is converted to T2, then T1, then the remaining molecule of iodine is recycled. What isn't converted to anything is excreted after about a week. 
Thank you you much. Very informative.
Just checked my FT3 and it's in the normal range but not optimal. Low side of normal.
So, what are your FT4 and TSH? You can't look at these numbers in isolation. They all relate to each other to tell the whole story.
FT4 is within normal limits but not optimal. TSH is 2.
Need my antibodies tested again as they seemed a little high last time.
So, you're under-medicated. You cannot tell how well you convert, nor how well you tolerate levo, until your TSH is down to one, and your FT4 is at least over mid-range.
Thank you. My GP is useless. Will only give me levo and it makes me sweaty and racing heart. So no clue how to approach this
Most GPs are useless! But, they are not allowed to prescribe T3 - and certainly wouldn't prescribe NDT. You'd have to see an endo for that.
Not sure that it is the levo making you sweaty with a racing heart. More likely to be lack of levo, because you're under-medicated. You need an increase in dose.
Thank you. I'm going to try and find a new doc. I'll bring all my results to them. Am so fed up being so fat and tired!
You're welcome. Good luck!
It really is worth posting your actual results and ranges - you’ll get good advice. Plus people are asking about your vitamin levels as that can really have an impact and getting them optimal can sort out the issues you seem to have on Levo. Worth saying your dose and how long you e been on it. People on here are better than doctors!
Hi Greygoose can I pick your 'expert brain' - my bloods show adequate levels for T4 and T3 but I still feel unwell and I have an atrophied thyroid gland - can I still change from T4 to T3 or would that be unwise. I feel as though regardless of blood tests (and mine never seem to show the real picture) I am not utilising the T4 etc. - i.e. not getting into the cells - any ideas? Thanks
You mean change from T4 only to T3 only? Why not try T4+T3 first?
As for 'adequate' levels, who said they were adequate? If you still feel unwell, then they aren't adequate for you, are they. What are your levels?
Hi there - here are my levels - recent test
TSH 0.81
Free T4 - 21.8 - range 10-20
FT3 4.1 range 3.5 - 6.5
Well, your FT3 is pretty low, not in the least bit adequate for the majority of hypos. You are a poor converter. Not surprising you still have symptoms.
So, trying T4+T3 would be a good idea as a first step. See how that suits you. T3 only should be a last resort.
Just out of interest why do you say keep to T4 as well - you are on T3 only would that not suit for me .......eventually.
Well, it might, but T3 only was a last ressort for me. I tried T4 only, T4+T3, NDT, NDT+T4, NDT+T3, and I was just getting worse and worse. So, in desperation I went onto T3 only.
It's always better to have some T4 in your system, if you can, as a back-up, in case you have some sort of trouble getting/taking T3. It's like a spare tyre you can always fall back on. If you're on T3 only, you have to make sure you take it every day, or else you could be in trouble.
Thanks Greygoose - reason I am asking is that I was on NDT back in the early 2000's and it didn't agree with me - profuse sweating etc. and very hyper - so really hoping that as the thyroid has atrophied that it might allow me to take it with ease. I hope so as I feel very ill and look awful. What do you think about the document that was on here regarding Ord's - is there any way my blood results are NOT showing the true picture - I have always had bloods that look OK when I am not - is there anything I can look to that there is a reason for this.
Quote
In Atrophic Thyroiditis, you do not need the TPO antibody to be raised.
You can have Atrophic Thyroiditis with or without the presence of Hashimoto’s (detected by elevat-ed TPO or Tg autoantibodies) or Graves’ disease (detected by raised TSAb autoanti-body).
Atrophic Thyroiditis is caused by an antibody called the TSH receptor blocking anti-body or TBAb.
The antibody blocks TSH from stimulating the thyroid gland (instead of overstimulating it as in Graves’). A severe flare of TBAb can block more than 98% of TSH receptors so that TSH cannot reach the gland, no matter how much TSH you have in circulation.
A small percentage (10%) of Hashi’s patients have this antibody at any one time (when researchers have taken a random sampling of patients with elevated TPO levels and clinically diagnosed hypothyroidism).
The raised TBAb antibody can also flare up and then go away again. Therefore, the TBAb antibody need not be constantly present, so it can be extremely difficult to de-tect.
Atrophic Thyroiditis caused by the TBAb antibody is another type of autoimmune thy-roid disease that can occur with or without the presence of Hashimoto’s.
Atrophy can happen before Hashi’s, or during Hashi’s, or in a person who never has Hashi’s (never has had elevated TPO). Most Hashi people do not experience severe thyroid atrophy.
But Atrophic Thyroiditis is not Hashi’s because it is not caused by the TPO antibody.
Gland atrophy does not always happen when the TBAb flares up, and if it happens, it doesn’t always happen at the same rate in all people.
Any ideas?
Thanks so much
Hi there - what do you think of my levels
Does that mean then that all the T4 ends up making you hyper?
If the patient has a thyroid and produces some thyroid hormones, then taking any thyroid hormones in a pill (i.e. Levo or NDT or T3) will reduce the output of the patient's thyroid.
So, someone with a thyroid which works, but doesn't work very well, will find their T4 drops, possibly dramatically, if they switch to T3 only. Some people on the forum, who have very sick thyroids, and who take T3-only have no T4 at all when they get tested.
Thank you, this is super helpful.
Like me! My FT4 is zero.
Does that mean then that all the T4 ends up making you hyper? No .. take an extreme ( and impossible ) example of somebody with no thyroid, so none of their own T3, who could not convert ANY T4 to T3 at all.... T4 cannot fit on to the receptor cells for T3 as it has one to many iodine atoms .. so basically they'd die because all cells only work from T3 .. T4 is inactive until it's had an iodine atom removed by the deiodinases . T4 = 4 iodine atoms .. deiodinases remove one to make T3 3 iodine atoms. ,
So T4 that couldn't convert to T3 could not make you have symptoms of hyperthyroidism.. because it can't act on any cells until it's been converted to T3 .. it simply can't fit.
When people say they are 'poor converters' .. they don't mean they can't convert ANY T4 to T3 at all.. they mean they don't convert it as efficiently as some other people do. , But they still convert some.
Sort of - it’s quite complicated and involves the deiodinases that convert T4 to T3 and then T2. If you keep upping T4 because you are not converting well and you have inadequate free T3 for health, it eventually suppresses the deiodinase (D2 I believe) that carries out the conversion, which makes matters worse. When you had a healthy thyroid it just made more T3 as needed without need to convert it from T4 (although some of it is derived that way, not all of it is). If you loose your thyroid function and are only given T4 you can only get T3 from its conversion and if your conversion of T4 to T3 is poor you are basically stuffed and can’t ever make enough T3 to feel fully better. No amount of T4 increase will help.
I have a gene for poor conversion and one for thyroid hormone resistance which may explain my poor conversion of T4 to T3. However, two close relatives felt very well on Levothyroxine so I was unlucky. I never felt well on Levothyroxine even after two years, despite being optimised (ie the best dose for you - it varies from person to person) so I swapped to natural dedicated thyroid which was used in the past. I have felt much better on it. Make sure you are optimised on levothyroxine as you may find it just needs the dose tweaking.
Hope that makes sense. This explains it in more detail:
I am on only T3. Have been for nearly a decade. Totally got my life back. I take my dose in the morning. I had total thyroidectomy in 96. Was on T 4 for years. But just felt sluggish, couldn't get my words out. Headaches.. joint aches.... to the point where i was being tested for fibromyalgia.
I then had to be treated for endometriosis. So have hormone replacement.
The doctors tried to stop my T3, as its to expensive. They did stop it for a while... i was poorly.
T4 doesnt absorb these hormones.... so luckly i am on T3
Then i had appointment with my consultant regarding hormones.... she said no way can i go on T4.
She confirmed this to endocrinologist and my GP.
Hope you are feeling ok. Take care. X
I thought if you didn’t have a thyroid you could not just be on t3. I had a TT 3 years ago wasn’t great on just t4 so went to an endo to have t3 as well . I’m on 10mcg t3 and can’t seem to feel well on higher dose and on 10 I still don’t feel right but don’t know why.
Hello.
No i am on T3 only.
40 micrograms a day. Feel totally great on them. When i was put on these i felt like i got my life back.
Did you have to wean yourself off t4 or just stop and what dose t3 did you put yourself on to begin with.
I have no thyroid at all- totally empty on CT scan 1 side; never grown the other side. Levo leaves me like a zombie after a few days- so slow I can’t drive and since I’m disabled that’s very necessary.
I assume I would have to take an enzyme in addition to the Levo to convert it to T3. But there’s no point since I can use T3.
I suggest you get a CT scan done- privately if necessary. At least then you know.
Bella 🦉
"I assume I would have to take an enzyme in addition to the Levo to convert it to T3. "
No , having no thyroid would not mean you need to take an enzyme ... you already have the required enzyme all over your body.
the enzymes that convert T4 to T3 are called deiodinase's ( D1 and D2 ) .
you might be less efficient at converting T4 to T3 than someone who had thyroid tissue, as there are deiodinase in thyroid tissue.... but there are deiodinase in nearly all cells so you would still convert some Levo to T3.
deiodinase conversion of T4 to T3
In my case NDT works the best. It took forever to find an endo willing to experiment. Good luck
Yes I did!! I was on Levo only since 1997 and feeling terrible and getting worse. Last year after learning about treatment for people like me with hypothyroid, who had been told for years that their thyroid results were perfectly normal, I came on here and tried to learn everything I could about it. That was in 2019.
Last year I took the bull by the horns and sourced and paid for T3 myself and I have been using it alongside a much reduced dose of Levo, felt much better, my hair started growing again a couple of months ago, then I started to lose weight.
I haven't told anyone on here yet, but I took the plunge last week and I kicked Levo into touch and I am on Tiromel - T3 only now, with the help of Paul Robinson's book, Recovering with T3. I have really not got too far along the road yet, but it was the next step for me I felt and I am learning as I go. I have been increasing my T3 slowly since last year, and so I was used to it, because it works a lot quicker than Levo and you do need time to get the right dose. I am now on 4 doses of T3 a day, I take one dose as I go to bed and another in the early hours of the morning, but I am doing OK as yet.
But if I didn't try I would never have known and it beats being on Levo hands down. And my current GP told me last year that he would not discuss T3 with me ever again because it was an illegal drug! That was when I told him I was taking T3 myself and had bought it myself online. He refused to let me see an Endo of my choice too because that was illegal because he was not in my area. Complete hogwash.
I decided to go 'native and do my own thing, with the help of this forum, it is really fantastic you won't go wrong here, because we are all in the same boat.
I am doing the same… now on 30mcg T3 daily… stopped T4/levo.What is your total daily dose?
I am on 75 mcg daily. 12.5 mcg at 6am, 25mcg at about 12,30pm, 12.5 mcg at 6 and 25mcg at bedtime usually between 9 and 10 pm, give or take a bit. I have had no bother with sleeping either, in fact I would say I sleep better.
How are you going with it now then, no problems?
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