I wrote a post the other day about difficulties getting any help from the NHS with regard to obtaining T3.
I now have some blood test results, they have not supplied the ranges!!! however I have had bloods done at this hospital before and will post their previous ranges with the latest bloods.
T3 4.2 ( 3.1-6.8)
T4 20.15 (11.0 -22.0)
No TSH given though I suspect they just forgot to print it in the letter!
Vitamin D was requested but not added however in March it was 65 (75-150 ) I increased my better you to 3000iu per day as i had reduced it in December when it was 90.
B12 was requested but not added to the letter again in March it was 691 ( 181-910 ) I take a super B complex daily.
Ferritin was requested, but not added to the letter again in March it was 75 ( 10- 291)
Folate was 7.5 (>5.4) the B complex contains methylfolate form not folic acid but this was 8.5 in March so I don't understand why that has decreased.
Finally the letter from the endocrinologist to myself and the GP say:
"We currently have restrictions on prescribing liothyroninedue to lack of enough evidence and relatively very high cost. I f you are able to prescribe liothyronine then we will be happy to monitor her clinically and biochemically."
I have sone unipharma Liothyronine from Greece 25mcg per tablet which I have cut into 4 roughly equal pieces, I am still symptomatic and my mental health is the symptom which concerns me the most. I feel as though I am living a half life at the moment.
If I take one quarter tablet first thing ( I take 75 mcg Levo at night )would that be the best way to start.
Thank you to all those who has posted supportive replies in the past I also wanted to tag SeasideSusie, Greygoose and Slowdragon as they have been very helpful in the past but I wasn't sure how to do that.
Many thanks in advance
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knitwitty
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First of all, do you have a reliable supply of T3? If not, not a good idea to start it. The T3 from Greece comes in boxes of 30, if I remember correctly. Cut into 4 that would last you 120 days. BUT at some point you are doubtless going to want to increase your dose, so it won't last as long. What will you do when it's gone?
Hi greygoose thanks for replying, I only have one box at the moment but am pretty sure I can get some tiromel from Turkey within the next few weeks, and possibly T3 from Greece in September.
I have held off on starting on T3 for the very reasons you have suggested.
I have been struggling for many months and suspect I don't convert very well, would you agree based on my current T4/T3 levels? my T4 has continued to rise since I started levothyroxine but my T3 has barely moved at all.
I am sick of feeling unwell, also someone has PM'd me with a supply from Thailand but those are 100mcg tablets so I am not sure how I would go about cutting those up.
OK, then, as long as you've thought that out, go ahead! Yes, I agree, you are a poor converter. Adding T3 to a reduced dose of levo would be the best thing to do.
Thank you, do I need to reduce my levo to 50 mcg per day or would it be better to leave it at 75mcg and see how I feel as my T4 is not too high at the moment. Or I could alternate 50 and 75 on alternate days if that might be better.
I have ordered a Paul Robinson book about getting well with T3 but it has not arrived yet.
I was thinking of re testing after 4 weeks on a quarter tablet of T3 taken first thing in the morning, does that sound reasonable?
Pls consider supplementing with 400 mcg of selenium. Thats what a knowledgable md told me when i told him i dont convert t4 to t3 well. Vitamin A is also important.
My view is that 400 micrograms is too high a dose.
Our requirements seem to vary depending on where you look but somewhere around 70 to 80 is commonly quoted. Toxic effects can be seen above 800 micrograms. Plus, almost any diet will contain some selenium.
Therefore, I suggest no more than 100 micrograms a day. Yes, I am aware that some research suggests 200 micrograms a day. But other research points out that 83 micrograms a day has a lasting effect for some time after stopping.
I don't think 400 micrograms a day would be too bad for a short period, in most of us. But it seems too much in the longer term.
I use 200 mcg a day because I was aware of the risks of too much selenium. To Knitwitty I would say please look at the experiences of a young fit man in his mid 30s who got a very high level of reverse T3 from taking a T4 medication. He is on this site as DAWID86 and he has also read the Paul Robinson books as I have too in 2014. We both also read the Dr Wilson online book which I highly recommend as that is how I figured out how to reduce my reverse T3 to 8 ng/dl in 2017 but since then it has climbed to 14 ng/dl as I have had no T3 since 2017, but am about to get some more from a Canadian site.
I personally would never agree to take a T4 containing medication after reading what happened to that unfortunate man as his level of reverse T3 he said had gone as high as 29. So what you will find in the useful Paul Robinson books is that he has been a hypothyroid person for many years, about 18 at the time he wrote those books prior to 2014, so now may be more than 25 years as it takes time to write books. What he found is that by moving more to T3 the effects of the T4 turning into reverse T3 were likely eliminated as that is MY opinion given reverse T3 is the only issue I have a tendency towards as I have no antibodies and technically therefore am not a hypothyroid person.
I sympathize with the low energy problem and will say that even when I had the T3 at ideal doses it did not make much difference, but I was NOT going to take too much and lose my own ability so I did the Dr Wilson recommended approach of only taking it some of the time in order to preserve my own ability. But Knitwitty is likely already in a completely dependent state now if many years has gone on so the idea of the ON and OFF again approach can only be done by people who are otherwise not really even a hypothyroid person and who wish to be able to keep their own production capabilities. The reason I am adamant about that is because I was turned slowly into a diabetic by wrongly being told to take insulin when I was 24 and now that I am 62 I would be dead if I did not take it. So I was not going to allow that to happen to my thyroid as well.
When I did my three different dose experiments in 2017, I found the relatively slow approach was more effective as taking more actually reduced the effectiveness and it made it way too expensive. So I have decided to never take more than a single tablet a day taken as two half split tablets in the day, each in a time away from food which would otherwise bind with it and make it less effective.
So the driving of TSH down to very low levels like 0.01 which is as low as mine got was enough to scare one of my two doctors as the authorities know that causes a complete loss of ability to make thyroid hormones eventually. I found my ability came back within a week if I stopped and did the tests during the period of not taking the T3.
Supplementing with selenium, or anything else, is not a quick fix. Just how long are we supposed to go on suffering from low T3 when there is the much quicker fix of taking direct T3. Of course, if we are low in any nutrient we should supplement it because everything works better when they are optimal. But, there are so many possible causes of poor conversion, that there always the possibility that optimising things like selenium won't improve conversion, anyway. It's not a given. And, before taking as much as 400 mcg, one really ought to have one's level tested first.
Thank you for replying, I already take selenium 200mcg daily and have done for over 7 months but it has not helped with my conversion, I'm glad it has worked for you though.
I have Paul's book Recovering With T3 and highly recommend it. I started on T3 only about 2 months ago and am slowly starting to feel human. Having the book handy really took away most of the trepidation.
Leave it at 75 mcg for now. You can always reduce it later. Adding in T3 should lower your FT4, anyway.
Retesting 4 weeks after adding 1/4 seems a little over-cautious to me. Given the level of your FT3, I would increase by another 1/4 two weeks later, and see how you feel before going to the expense of retesting. Retest when you start to feel better.
Thank you so much, I am going to get started, I have just about had enough of feeling terrible, I really appreciate your help and the support from everyone on here.
Hi greygoose, I see you recommended that she should not start T3 if reliable source cannot be found. Silly question probably... but what are the results starting T3 and then going off after a period of time? I imagine crash of energy perhaps anything else to be aware of? Does it imply that once starting on T3, you should tahe it for the rest of your life?
No, it doesn't imply that exactly. Although, of course, if you need it, you need it, and that will be for life. I don't think conversion often improves by magic. It's a continuous need. And, if you stop T3, your conversion will, in all likely-hood, just go back to being as poor as it was before you started it.
However, I have noticed in replies on here that people start T3, feel much, much better, then have to stop it for some reason - doctor will no-longer prescribe it, or their internet source disappears - and they are forced to go without it for some time. If and when they restart it, they never quite feel that same buzz that they felt when they first started it.
Plus, of course, it's extremely demoralising to start feeling better and then feel ten times worse if you are forced to stop T3. So always best to secure a source of supple, as well as you can, before starting it.
Another side to it is that it takes the body quite a long time to truly settle on a dose and get the most out of it. This is on top of the fact that it will take months to fully adjust the dose and get optimal.
Its common to hear people on the forum mention it took them a year or more AFTER they found their ideal dose and supplement routine to feel the full benefit. Though in broad terms 6 weeks is the minimum you can give to evaluate a new dose, and I'd say after about 3 months you've got a fairly good idea where it will get you.
With all these long time scales involved, trying a dose out for a couple of months and then being forced to stop is a big setback.
Have you considered getting the Di02 gene test done. I like you struggled with the NHS to get T3. I went private eventually and it was proven that I needed T3 which I got privately from Germany. NHS has now finally approved 15 months on. Recently I got the Di02 gene test done and it was positive Heterozygous. I wish I’d got this done much sooner to prove I was a poor converter of T4 to T3. And maybe my long NHS journey would have been much shorter for the T3 med. The test costs £150 and is well worth it.
For clarity, the gene that affects T4 to T3 conversion is called DIO2 - that is, three letters and a number. Not D102 - a letter and three numbers. Not DI02 - two letters and two numbers.
The name comes from the enzyme that this gene affects which is a deiodinase. It removes an iodine atom from a thyroid hormone molecule - it deiodinates it.
On this forum we probably understand, but if you wish to look it up anywhere, it might help to get it right. If you are discussing with a doctor, and get it wrong, you are providing an excuse for them to dismiss what you say.
(More strictly, two single-nucleotide polymorphisms (SNPs) on the DIO2 gene, rs225014 and rs225015.)
Thanks Helvella for the clarification on DIO2. I did think it was 2 letters and 2 numbers. Now I know and won’t say the wrong thing with my Drs. Although my GP didn’t have a clue about the test or what it meant. I just wish I got it done a year ago rather than going through hell.
Over the years I have added to my standard response - it is meant, as you obviously appreciate, to be helpful and to ensure that the incorrect versions don't get perpetuated. Anyone can make a typo or mis-read - well, I can!
It’s all private. So, if you don’t have the gene then you don’t have to mention it to your Dr. If it’s not DIO2 then it could be something else. But if it is positive you can use this information to certainly help you to get T3. I was a little concerned before having this test. I’m pleased now I’ve done it and my GP was very pleased.
Hello McPammy and indeed everyone else on this great website. Please can you tell me where we can get the test done? I first heard about DI02 on this forum some weeks ago but didn’t know how to go about getting it. My daughter is a trainee opera singer, she has struggled with fatigue, loss of hair, weight gain for so long now and the Endocrinologist said she had antibodies of over 400 but while her levels are moderately normal nothing to be done and certainly no thyroxine. Maybe after she has a child and her levels are likely to fall to a level of medication need, then that is what she will get. There is little likelihood of this at the moment!! Children, that is. I am hypothyroid so he said it is likely that she has inherited it. This verdict was given three years ago. Essentially I want to find an endocrinologist and get this DI02 test done. She’s struggled for too long and she needs her energy. Can anyone help me please? I should be so grateful. 😊
I’m so very sorry to hear what your daughter and yourself have been going through. It really is s struggle. I got the DIO2 test done via Thyroid Uk website. The company is Regenerus Laboratories. You can find them on line too. When the field asks who’s your practitioner put Thyroid UK in.
For me it was well worth it. I wish I’d got it done sooner as getting the T3 I need took over a year while I was in quite a bad way. I could hardly walk. I’ve had Hashimotos for 12 years now. I was only ever given T4 medication. I had trouble always throughout with severe weakness. No one knew then what the problem was. I had to keep lowering my Levothyroxine dose over the years. It came down from 125 to 75 daily. Now I’m on 75 Levo and 5+5 mcg T3. I couldn’t walk ten steps and now I can walk 10 miles! My sister had very high antibodies 1000+. As her levels were still in range they wouldn’t do anything for her. They said she had no thyroid issue. Then shortly after in Z different hospital they found a lump. She had thyroid cancer. She too is fighting now for T3 and is just about to do her DIO2 gene test. If I have it she will have it too. I’m convinced my mum who died at 62 had the same problem as me. She struggled a lot but was never diagnosed with a thyroid problem. So I’d urge you and your daughter to have the test.
Do your bloods show any signs of poor conversion T4 to T3.
Thank you so much for the illuminating and thorough response, and what a time you have had of it.
The doc won’t do a T3 so I will have to push for that I think it is ?cost but my daughter was done that many years ago and her gp wouldn’t do an up to date T3 either, so we are starting from scratch really; in relation to being pro-active, that is. I need to get her sorted out before me but you are so right, we both need the test. Do you think that I should just go ahead now and get it done without any more consulting the doc about levels and new bloods? I feel that is the right way forward. Thank you so much once again. Really.
I would get the gene test done if the Dr won’t do a T3. The cost will be the medication not the actual blood test. Then if the DIO2 is positive, he will have to get a T3 blood test I’d say. Or there is the private bloods route too. If he/ her still won’t do a T3 test then I’d go private.
Also check vitamins levels for :
B12
Vit D
Folate
Ferritin
All need to be mid range at least. Just within the range is not high enough to help convert T4 to T3.
I also have B12 deficiency and ferritin deficiency. I’m on medication now for these also for life.
It takes 3/4 weeks for the gene test in all. A week to arrive. Then 3 weeks later you’ll get an email. You’ll have a consultation for an interpretation of the report, which takes about 15 mins. I was quite anxious waiting. But it was worth it. As now I know what is wrong and why it’s wrong. This did help me complete my puzzle. Since I’ve had the gene test I feel so much better in my mind. It has confirmed what I always thought and many Drs would not believe me. Now I can show them the report. My GP was glad as he was trying to fight my corner with an Endocrinologist who was saying I needed a psychiatric assessment!!! Good grief!!! All I needed was T3.
Greyhouse, the DIO2 gene has a hand in converting T4 into T3. It doesn't have much to do with hypothyroidism in general, and it seems to cause more trouble after people have been diagnosed hypothyroid and started on Levothyroxine, Throid hormone replacement.
Proving a flaw in the gene can help people who already have a prescription for Levothyroxine (T4), get it supplemented with some T3. The gene can prove that you are less good at converting T4 into T3.
If you'd like more advice about your daughter's illness you could make your own new post. Include any thyroid blood tests she's had, and a description of symptoms.
Yes, you can still be a bad converter without the DIO2 gene.
The exact role of the gene in converting is still a bit contraversial. We have at least one knowledgeable regular who argues it makes hardly any difference.
On the other hand we know it's possible to be such a bad converter you can have over range freeT4 and a very low or under range freeT3, there's a lot of individual variation in just how bad conversion is, and it can change over time with people who have been sick a long time often worse converters than they were earlier in life. it's a complex picture!
Can I just check that I have this right, but once you'd had the DIO2 test done and got a positive result, following that did the NHS agree to pay for the T3, because you proved you needed it, or were you still having to source it privately?
It didn’t quite turn out like that. I had the private T3 medication. The NHS Endocrinologist refused to support, even though requested by my GP and private Professor. I then decided to do the DIO2 test and sent off for it.
Then out of the blue the NHS Endocrinologist agreed to prescribe me T3. Obviously I was delighted. But wished they’d done that a year or more ago and I wouldn’t have lost my dream job. Then the report came back positive. My GP was very pleased with the extra layer of evidence for my case to have T3 on the NHS finally. I did ask my GP why did the NHS Endocrinologist changed his mind he said he’d ( NHS Endo) had his knuckles wrapped by his superiors.
I would suggest that the positive gene result would help in any event.
Thanks McPammy - it is certainly something to bear in mind. I am sorry you lost your dream job - I can sympathise. It is a crying shame that the "doctors" who are supposed to be treating u cannot get their heads around the devastating consequences we face when they don't properly address our medical needs. I am currently dragging myself around my house - unable to do more than sit in a chair and my GP just doesn't get it. Something is very very wrong and getting worse on a daily basis and I cannot seem to get anyone to act.
Redlester, this is a bit of a tricky question. It's definitely not the case that everyone with the bad DIO2 gene result gets prescribed T3. It's that some members have managed to use the DIO2 gene result as part of their larger fight to get T3 and have found it useful.
Because the NHS doesn't do the test (I'm not quite sure about this, it may just not be routine) your doctor is not under any obligation to take it seriously, and may well have never heard of it. Many private tests get laughed out of doctor's surgery because they tend not to trust them. The DIO2 test seems to be getting a little bit more respect, but its still a roll of the dice whether yours will accept it.
It's actually a roll of the dice whether you will have the gene result you hope for, even if poor conversion has already been proven with a blood test. There are many causes for poor conversion, and there are still strong arguments the DIO2 gene doesn't make very much difference to it.
If you search around the forum you may be able to find other members experiences of fighting for T3 and how the DIO2 result helped or made no difference for different people.
Thanks Silver Avocado. I certainly wouldn't be "hoping" for any particular outcome one way or the other - I am simply in the position where I need as much evidence as I can get of what is causing problems so that things can either be ruled out or greater consideration can be focused on what might be causing problems for me, for example poor conversion, in which case it would seem to be entirely wrong to have T4 prescribed if anything was going to be prescribed at all. I actually think that if I did get the DIO2 test done my GP would be unlikely to reject it as she took the Medichecks tests I had done on board.
Hello I currently have t3 on nhs prescription and been referred to nhs endo as ccg want to withdraw the t3. The professor I met with has told me this week that the D102 test is not accepted by the nhs. I had asked if it could be done on nhs and if not I would do privately and asked if the nhs would accept a private test. He said further research had proven the D102 test was not reliable. He wants to take me off all meds but at moment being sent for bloods dexa scan etc. If anyone has a good private t3 supplier pls let me know as my days are numbered with regards to nhs thanks
Thank you to everyone who has posted today, I was called away because my father in law passed away suddenly this morning and my hubby and I had to take a 160 mile round trip to set things in motion with regards to the funeral etc ...
I have read all the posts but I am too worn out to respond to any tonight.
I really appreciate everyone's input, this is such supportive community. Thank you one and all!
I’m writing here of my own experience, I had similar conversion rate as you and I’m on 150 levo. I started by taking 1/4 tablet a day and saw a positive difference in a few days. I then reduced my levo to 125 and felt the lull again. So put my dose back up to 150. Ran another couple of days but it wasn’t as good. So started taking 1/2 tablet t3 about 2 weeks ago and this seems to be my dose as I have felt no ill effect and am feeling all the positive ones. During this time I have been monitoring my basel body temp in a morn and my heart rate.
I will be getting some more blood tests soon to make a comparison too.
The people on here were nothing but helpful to me and since using this forum, I have never felt more informed and in control of my own health.
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