Dio2 Gene Mutations anyone have these and whats worked best t3 only or Combo Therapy?

[jjkeurope]

Have both Dio2 Mutations Rs255014 CC + RS12885300 CC trialled t3 only at low doses 5mcg per day worked for 8 weeks no anxiety energy and motivation but then I experienced adrenal burnt out couldn't tolerate any t3

Question if we have these SNPs and don't convert t4 well to t3 why we need t4? Also, anyone doing combo t3/t4 what kind of dose is working for you?

my current levels FT4 15.2 FT3 4.7 TSH 1.26 raised Tpo antibodies 20

If you do combi t3/t4 are you trying to get to the higher end of FT4 fT3 Ranges to try work out dose needed?

I'm currently trialling 5mcg and 100 Levo

[SlowDragon Administrator]

Please add ranges on these results

What vitamin supplements are you currently

When were vitamin D, folate, ferritin and B12 last tested

Likely to need 2 or 3 SMALL split doses T3 through the day

(5mcg x 3 per day)

But only add 5mcg at a time

Personally I find 3 doses at equal 8 hour gap works best

And yes Ft4 and Ft3 high in range...more on my profile

Others manage on 2 doses a day or single dose.....we are all different. It’s trial and error what suits you

[jjkeurope in reply to SlowDragon]

Hi slow dragon thanks for the info I finally got a copy of the results these are with no t3/t4 taken for 3 weeks

TSH 1.29 0.27-4.20

FT4 15.1 12-22.0

fT3 4.7 3.1-6.8

TPO not tested usually elevated under ref range

D 103 30-125

FOL 7.2 --

Ferritin 224 30-400

B12 406 197- 771

What I am trying to work out is to go t4/t3 or t3 only with these dio2 SNPs

When I go t4 it seems I need 200mcg+ to get any benefit but later I get side effects from

such high doses joint pain etc

When I go t3 only I get a benefit at 5mcg but when I try to do to 10 15 mcg per day

I'm just getting too wired and can't handle it

Basically, I feel like a need a slow-release t3

Maybe adrenals not ready for higher doses of t3

Any advice much appreciated

[SlowDragon Administrator in reply to jjkeurope]

with no t3/t4 taken for 3 weeks

TSH 1.29 0.27-4.20

FT4 15.1 12-22.0

fT3 4.7 3.1-6.8

These results are extraordinary if not had any levothyroxine or T3 for 3 weeks

You almost look like you need any thyroid medication

How did you feel with no medication after 3 weeks

[jjkeurope in reply to SlowDragon]

when do you say extraordinary good/bad? I was on 5mcg just t3 and stopped for a few weeks before these tests did not feel well without it anxiety depression main symptoms fatigue etc what do think of vits are they ok for t3?

[SlowDragon Administrator in reply to jjkeurope]

Well obviously you can’t take just 5mcg T3

That would be ludicrously under medicated

[Jazzw]

How do you know it was adrenal burn out? Genuine question. I think sometimes we can attribute symptoms to the wrong thing (I know I have in the past!). It could simply be that you need more levothyroxine or more T3. I see from earlier posts that you were on 400mcg of levothyroxine a year ago, so you’ve clearly tolerated more in the past.

What’s your iron status? I’ve observed from reading posts (and personal experience) that it needs to be a decent level to tolerate taking T3.

Your TSH is over 1 which would suggest a raise in dose(s) could be feasible (but lab ranges for the results you’ve posted would be helpful).

[McPammy]

Hi. I have DIO2 gene as positive. I’ve also got Hashimotos. I was on Levothyroxine only for years and struggling., my GP never checked T3. After I became extremely unwell in 2018 I finally went private after 18 months of failed help from the NHS. I was put on a T3 plus Levothyroxine trial. Oh boy what a huge positive response I got. I’m now mainly symptom free, lost 4st stone In a year that I previously couldn’t stop putting on and full of energy. I take 5mcg T3 twice a day leaving 7/8hrs between doses. I also take 75mcg liquid Levothyroxine which I have to take half twice a day also. I take 5mcg T3 three times a day if I’m going the gym for a prolonged period. For some reason I can’t tolerate a full dose of Levothyroxine anymore. For myself 5mcg twice a day of T3 gets me 50% in the blood range and that’s leaving 18hrs since last dose. Same with Levothyroxine. So when I take my medication I actually get much higher. I’ve had blood tests when I’ve not long taken T3 and T4 then I get to the top of the ranges but not over. Some people need much more medication to get them optimal or some much less. It must be just how we are individually. Some people think 5mcg twice a day is far too small a dose but for me it’s perfect. I also thought I had adrenal issues. I had two synacthen tests which came back negative so no adrenal issues. I needed T3 medication to boost my adrenals. I went from 68 to 456 (155-650) in a few weeks after starting T3 medication and its remained good since. I get my bloods checked every 3 months now by my GP. I also found I had B12 and ferritin deficiency. I’m now on B12 injections every 3 months and repeat prescriptions for ferris Fumerate. I find having good B12and ferritin has also boosted my energy levels. My vit D is good snd I don’t supplement recent test last week was 103. Also my folate is good at 16 ( above 4) again I don’t supplement. I’m a vegetarian which is why my B12 and ferritin is poor. I eat fruit everyday and greens to boost my folate. So a lot is about diet too.

If you are feeling more tired recently after starting T3 have you considered that you could be going over at points. I have had experience that going over can suddenly make you feel very weak and heavy. When I felt like this I got my bloods checked and I was over medicated. My GP gave me a spare blood form to go to the hospital for a test when feeling like this. I always have a spare blood form now to capture what is going on. But I’ve not needed to use this option for quite some time now as everything seems much better and on a level. I feel our bodies really do not like messing about with timings or change in doses. That old saying about hormones comes to mind.

Slow, steady and regular I’d say. T3 has improved my health no end I couldn’t possibly list all the benefits I now feel.

[Cat013]

I started on 2x5mcg of t3 a day with 75/100 alternate days of levo and felt horrendous. So I went back up to 112.5mcg of levo and improved. 10mcg wasn’t nearly enough for me. It only shifted my t3 from 4.97 to 5.1. A good start though!

Three months in and I’m on 100mcg of levo and 37.5mcg of t3 taken three times a day. Still putting on weight (I do all the right things) and feeling a bit crap (although definitely better than levo alone!). They also thought I had adrenal issues but apparently I was just under medicated.

Did you reduce your levo when you started taking t3? That did not work for me. I felt yuk. Wondered if that caused your symptoms.

Like the others have said it’s finding out what works for you. I now take t3 three times a day as I can feel the exact point the t3 starts to deplete. I feel cold and shaky and my heart beats are stronger again. All gone with my next dose. I’m definitely still not myself yet so it shows how different we all are. I’d expect you need a change of dose depending on the answer to whether you dropped your levo for the t3. xx

[Aunds]

Hi Jjkeurope. I have double mutation of the DIO2 gene and Hashimotos. For a longtime I took T3 only. I felt ok but not well. Then my endo tried me on NDT, that didn’t work for me and I put on lots of weight. Finally I agreed to a trial of low dose T4 (levothyroxine) and I am the best I’ve ever been. It was slowly increased and now I take 125mg levo at 6am with 6.25mg T3 and then I take a further 6.25mcg T3 at 6pm. If I’m particularly physically active I take a further dose of 6.25mcg at 12 midday. My results are all right at the top of range and that’s the only place I feel well. My vitamins are now all in range and finally after 6 years my antibodies have reduced. I hope this helps.