T3 Supplement to T4 or T3 Only When Not Converting Well?

[MrB01]

Hi. I'm following up on my previous post about my wife's hypo condition and the wonderful responses from you all. Since then I have done a lot of reading (including Recovering with T3 - really interesting!)

She is on 100mg Levo and two weeks ago started on T3 6.25 3 times per day (2 weeks now) but still feels very fatigued (probably worse), getting weaker and continues to lose weight. Her condition and results appear to show she is a bad converter (High FT4, Low FT3). She had a bad reading back in March 2020 for FT3:RT3 at 12.45 when range was 15 to 75. She's on a Coeliac diet, Cortisol appears OK. We are in the process of bringing D3 and B12 up just a little higher. Folate and Iron are OK. No issues with other wide ranging medicheck tests. Have also booked a DI02 test.

Appointments with Doctors are the usual disappointment although she now has a referral to a neurologist for her hands (which have almost stopped working!).

I am interested in comments from those of you who are on T4 with a T3 supplement or totally T3 and particularly those with confirmed DIO2 conversion issues.

(1) Assuming T4 and T3 supplement, what levels of T3 support did you start to see improvements (I know everyone is different, but want to get a feel for it) and what works for you now. Of course this assumes that you were successful.

(2) Anyone gone "off piste" using just T3?

From the two questions, I am trying to get a "feel" if it makes sense to;

(a) continue the "trial" of T4+T3, by upping T3 slowly and very cautiously so as not to over medicate to see if we eventually get the desired results (at what point do we say it's not working?) and then;

(b) if (a) doesn't work, to seriously consider T3 only as detailed in Paul Robinson's excellent book, Recovering with T3.

To be honest, given how she is at the moment, we're keen now to jump to (b) and to "just get on with it", but also feel we should be taking cautious baby steps.

We're currently waiting for an appointment with a friendly T3 Endo to formalise our approach and get some support - after all, I'm not a Doctor, even if I'm starting to feel like one!

Thanks so much for any insight.

Mr.B

[greygoose]

I'm on T3 only, but I'm not sure my experience would be of any use to you, because I'm T3 only because I cannot tolerate T4 in any shape or form. I know this from extensive experimenting on myself. I also know for certain that I need a reasonably high dose of T3 - 75 mcg. The odds that your wife is in the same wierd situation as me are pretty low, so I won't bore you with the details.

What I wanted to say was that there is no point in wasting money testing rT3 and the rT3 ratio. It doesn't prove anything. I imagine - although you don't give the actual numbers - that her rT3 is high because her FT4 is high, and she needs it high in order to get enough FT3, because she's a poor converter. The high rT3 is the result, not the cause. And, you tell how well she converts by comparing the FT4 with the FT3, not by looking at the rT3. There are many, many causes of high rT3, and only one of them has anything to do with thyroid.

As to the FT3:rT3 ration, it isn't even comparing like with like, because the rT3 measurement is Total, not Free. So, is of very little use to the average hypo patient.

One more thing I would like to say and that is that she doesn't absolutely need to go T3 only just because she's a poor converter. A lot of people need a decent level of T4 in their system to feel well, even if they don't convert much of it. But, to find out what levels of which she needs, she'll have to do a lot of trying and failing and trying again: it's all trial and error! It took me over 10 years to find out what dose of which was right for me.

[MrB01 in reply to greygoose]

Thx GG. That's useful. I hadn't realised the rT3:FT4 ratio was useless for what we were trying to achieve. The test was performed as part of the Medichecks Thyroid test just before they stopped doing it due to lockdown. They told me that the samples were sent to the USA for that part of the test. Which, as lockdown happened, explained why it took so long to get the result! They don't do it now. But I'll try and not hang anything on it and go with the FT4, FT3 gap (which I posted about before) which in itself points to poor conversion.

[greygoose in reply to MrB01]

That's all the proof of poor conversion you need. Doctors have no understanding of rT3, anyway.

[fuchsia-pink]

I'm on combination lio/endo - but seem to have the gut of a rhino. I was put on an astonishing "starter dose" of 40 mcg a day of lio (one tablet in the morning, one in the evening) by my endo - no "low and slow" for him! - which was halved 6 weeks later in an appointment lasting 30 seconds, so guess the initial dose was a mistake. I was fine with the monster initial dose but struggled with the quick reduction down to 20 mcg, again in one go - but once I got used to it I was fine. I've never done the Dio2 test or tried T3-only.

Reading other people's posts, some sail through; some find lio very powerful and struggle even with baby steps. It may be that, for your wife, starting on 3 doses of 6.25 mcg of lio is a bit quick - she may be happier going back down to 1/2 tablet a day for a couple of weeks and adding to that more slowly.

But the point is, we're all so different you can't really do more than trial and error.

Please keep supporting her - you're doing a FAB job. I hope she gets to where she needs to be soon x

[MrB01 in reply to fuchsia-pink]

Thx FP. Really useful to read your experience. Reading between the lines, it seems that small changes are best. I suppose for my wife though, I'm seeing that due to the "half life" of T3, that at three doses, she is getting quite a bit less of a "surge" than you in your one 20mg shot. It really is going to be trial and error!

[knitwitty in reply to MrB01]

Hi MrB

Your wife is very lucky to have you fighting her corner for her.

I take Levo (75mcg/87.5mcg on alternate days) and 6.25mcg of T3 twice per day. I have been stable on this dose of T3 for about 8 months now. But it took around 4-5 months of being on the same dose of T3 before I started to feel really well again. I did try increasing to a third dose but this sent my T3 over the top of the range. I came to the conclusion ( maybe incorrectly) that because my T3 had been so low for so long it took my body a while to adjust to the supplemental T3 and for it to be absorbed by the cells and for me to feel well again.

I have read that for lots of people the effect of adding T3 is almost instant, but for me it took quite a while before I felt well again, I guess we are all different. I also took it very slowly when I was adding the T3 and I started on one dose and stayed on that for about 4 weeks before increasing. I was worried about over doing it too quickly as I received no help from the endo or my GP and I didn't want to make things worse for myself in the long run.

I too have a faulty DIO2 gene, but still couldn't get any T3 on the NHS.

Good luck, to both you and your wife.

[MrB01 in reply to knitwitty]

Thanks knitwitty. Your story makes interesting ready. There are so many variables, aren't there? We are all so different!

It's very difficult to be certain what will make a real difference - especially if we have to wait months to see it. All these answers and others on the forum help us get an idea of what is going but then you add a human being into the mix and due to their variance, any hint of understanding seems to go out of the window!

[knitwitty in reply to MrB01]

Tell me about it!

I had been ill for many years before I was diagnosed with hypothyroidism and despite a steady increase in my Free T4 numbers my T3 stayed at rock bottom ( of course I only found out I was abad convertor because I did my own private blood tests), as according to my GP my T4 and TSH was "fine".

I pleaded with the Endo for a trial of T3 but was refused on cost grounds. I then went ahead and paid for the DIO2 test and was found to have the faulty gene which hindered conversion. Again despite the Endo seeing the results of this test he still refused the t3 on cost grounds, he has however written to my GP 3x to ask him to prescribe. The Endo suggested I buy my own T3 off the internet, which I did after much deliberating, and based on my successful introduction of the T3 it prompted him to write to my GP.

The GP is refusing to follow the Endo's recommendation because the doesn't feel "confident " prescribing T3 as he has no one else on it. I know you couldn't make it up.

I hope your wife is soon feeling much better, having you looking out for her will be helping out enormously, and dare I say it the doctors will take her much more seriously if you are backing her up. All the best.

[MrB01 in reply to knitwitty]

Yes, this "follow the manual" thing from doctors and endos is so short sighted. They really don't like going "off-script". Our last doctor's test a couple of months ago only tested T4 ... the result - you're taking too much! I gave him short shrift about not testing T3 over the phone and suggested he should see her. He then spent the next 2.5 mins of our 5 minute slot telling us why Covid-19 meant he couldn't see anyone. I had the sense to finish the conversation before I boiled over and booked an appointment with another doctor, who at least listened to her and then referred her to a neurology clinic for her hand's immobility. It might only help indirectly. We shall see.

Thanks for your responses and words of support.