Moving from T4 to T4/T3 combo with DIO2 gene.

[HealthySam]

I have Hashimotos (hypothyroid). I recently discovered I have DIO2 gene (Regenerus test) and MTHFR homozygous C677T gene.I’m currently fighting my case to have T3 added to my T4 on the NHS and have provided all the written evidence (updates on prescribing T3, details on DIO2 gene showing lab results as normal when not etc) so hopefully will be successful. 

My question is if moving from T4 only (100 mg) what would best be my new prescription likely to be would I drop T4 say to 50 and add T3 of say 25? I’m asking as the endocrinologist doesn’t seem to know much about the thyroid! Thanks.

[Lalatoot]

No. Endos seem to have a protocol where it is drop levo by 50mcg and add in 20mcg t3 but this is not helpful for many of us.You need to look at your last bloods. Where is ft4 in its range? If it is at the top or over range then drop 25mcg off your levo. If it is not over say 80% through range then leave your dose alone.

You may not need 20mcg lio T3. You do not start on a full dose. Start on 5mcgs and build up. You may find you stop on 10mcg or 15mcg.

I was on 100mcg levo daily. My ft4 was 60%through range. The endo cut it to 50mcg and added in 20mcg lio. She thought I should just change to this overnight. I knew better from reading on here . I worked my way to the prescribed

Doses. FT4 ended up 0% through range ft3 was 76%. This didn't make me well at all. I spent 2 years gradually adjusting doses. My doses that I settled on are levo 100mcg and lio 7.5mcg which I split into 2 doses.

[HealthySam in reply to Lalatoot]

Thanks very helpful info 👍🏼

[arTistapple in reply to Lalatoot]

I was just asking myself today (in preparation for introducing T3) this very question. Thank you Lalatout for this explanation and your experience.

[SlowDragon Administrator]

Please add most recent TSH, Ft4 and Ft3 results

Always test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

Before adding T3 we need OPTIMAL Vitamin levels

What are your most recent vitamin D, folate, ferritin and B12

As you have Hashimoto’s are you now on strictly gluten free diet and/or dairy free diet

[HealthySam in reply to SlowDragon]

Thanks I already do the above Gluten & dairy free; test in the morning etc as I have followed all your advice from this forum. With DIO2 gene the results can look fine even though I’m not so I’m going on how I feel rather than what they look like. Having this gene alongside MTFHR also means a high risk for thyroid cancer so asking for a scan. I take a liquid methylated Vit B12 also advised here which is much better than any other vitamins I’ve taken and the Vitamin D spray. Recently started LDN which helps greatly with fatigue and inflammation. Now also avoiding folic acid as apparently that is toxic for the MTFHR gene. It’s really just one thing after another 🫢

[SlowDragon Administrator in reply to HealthySam]

How high is Ft4 and Ft3 levels

Depending where Ft4 is within range depends on whether you need to reduce levothyroxine and by how much

[Thyroidconfusion]

HealthySam thanks for your past I am currently on the start of a journey to get a T3 trial for my wife after 20 years of levo with no symptom relief. I will now get a DIO2 test as her levels look good but the GP is only interested TSH. Good luck

[HealthySam in reply to Thyroidconfusion]

I used regenerus for the test they only gave the result (which is sent to your GP so you will have to ask for a copy) I found more information by searching online. Basically with this gene it doesn’t matter what your bloods say they will be inaccurate.

It means you can’t convert T4 to T3 so need T3 medication. In the past this medication was really expensive so this gene was really the only justification for being prescribed T3. Now, however, the company producing it has been taken to court so it is no longer expensive. See info here:

2022 update - National guidelines p15 shows which NHS trusts are not meeting the guidelines so you can use this info to push for it or at least a trial.

thyroiduk.org/wp-content/up...

[1tuppence in reply to Thyroidconfusion]

Hi. If you decide to go the Regenerus route for your wife there is an option to have your results given to you by a support person. It costs an extra £65.00 but means you get your wife's results and then choose whether or not to share with your GP.

[Thyroidconfusion in reply to 1tuppence]

Thanks, there is a more comprehensive test with Blue Horizons which is currently on offer which i may choose.

[1tuppence in reply to Thyroidconfusion]

Could you tell me which one it is, please? Thku.

[Thyroidconfusion in reply to 1tuppence]

I have included the link below. bluehorizonbloodtests.co.uk...

[1tuppence in reply to Thyroidconfusion]

Thank you.

[McPammy]

I have Hashimotos and positive DIO2 gene test When I added T3 to my T4 Levothyroxine dose I didn’t change my Levothyroxine dose. It was about 90% through the range. My T3 dose was 5mcg twice a day 8hrs apart. It worked and worked well. I’m still on the same T3 dose after 3 years now. And have felt so youthful. I did reduce Levothyroxine by 10% to 68mcg. This is where I’ve found my sweet spot. I’m on liquid Levothyroxine which helps when reducing or increasing as it’s so easy in liquid form. I’ve had covid recently for the first time and struggling a bit coming out of that. I don’t feel its my thyroid levels more to do with post covid maybe. I’m getting blood tests next week to make sure my thyroid levels are still good. I aim for a TSH of around 1.00. And T4 and T3 levels mid way. This really works well for me. We are all slightly different though. For me T3 has been a miracle drug. Years wasted thinking the NHS knew best…. Not! I went private only that was my game changer.