About to start T3. Could I confirm what levo dose to continue on?

[Highland49]

Dear All,

Yesterday I was prescribed T3, 5mcg twice a day. I remember reading previous replies on here that said to reduce levo by 25mcg once you start on T3 but I'm on 75mcg so would be a little difficult to cut tablets down by a third. Endo just said to continue with the 75.

Could I just confirm that I need to reduce by 25mcg with my results? They're on my profile. With the T3, I'll start with 5mcg each morning, then will bring in the second dose after two weeks, as advised previously on here.

Thank you.

[SlowDragon Administrator]

Your profile recent results are difficult to decipher

Can you add all most recent test results here including ranges. Looks like you have high reverse T3?

[Highland49 in reply to SlowDragon]

Thanks SlowDragon,

I've just updated these. The consultant confirmed the high reverse T3 on Wednesday.

[SlowDragon Administrator in reply to Highland49]

That's much clearer

Are you lactose intolerant? If not, wondering why you are on Teva? It upsets many, many patients

healthunlocked.com/search/p...

Have you tried other brands of Levothyroxine?

What does consultant says about high reverse T3

[SlowDragon Administrator in reply to Highland49]

Ignore the Teva comment, I see you are dairy intolerant

Though you might try liquid Levothyroxine instead of Teva, just to see if Teva is upsetting you

But reducing Levothyroxine dose adding T3 is likely to help. Will lower reverse T3 too

Can you get 50mcg tablets of Teva.

Otherwise can take full 75mcg tablet one day and cut in half 37.5mcg for alternate day. That approximates to 50mcg per day. Easy to cut with craft scalpel knife

Best to only change one thing at a time. So reducing Teva, rather than trying liquid Levothyroxine. Though it may be something to consider in future

[Highland49 in reply to SlowDragon]

I'm sure that I'll get used to cutting the pills down and yes, like you say, I only want to change one thing at a time. I'm seeing GP today and hoping I can at least get my T4 prescription through the NHS. This has all been so costly when I'm barely working.

[SlowDragon Administrator]

Also recommend you consider DIO2 gene test. It's a common variation. Approx 16% of thyroid patients have it

thyroiduk.org.uk/tuk/testin...

Vitamin D mouth spray by Better You is good as avoids poor gut function of Hashimoto's

But don't change at moment.

Only ever make one change at a timd

[Highland49 in reply to SlowDragon]

I was really thinking about the DIO2 gene test. Hopefully it will strengthen my case to getting T3 on the NHS but I wonder how many are successful that way?

Definitely something to bear in mind with the D3. My consultant wants me to recheck the Vitamin D before my next visit in December, so it's really good that he is aware of the importance.

Thanks so much for your replies.

[SlowDragon Administrator in reply to Highland49]

I have heterozygous DIO2, it helped strengthen my successful request for NHS funding of T3. More info on my profile

[Highland49 in reply to SlowDragon]

Thanks SlowDragon,

Your profile is so helpful and a wonderful success story. So good that you can now share your wisdom.

[ShinyB in reply to Highland49]

There's another forum user I'm aware of, in addition to SlowDragon below, who has successfully used her DIO2 result to secure T3 on the NHS. There may well be several others. But I have also read of people whose results were ignored. So I don't think it will automatically secure you T3. But it can certainly weight your case! I'm planning on getting it done myself soon.

[SlowDragon Administrator in reply to ShinyB]

There's info on Improve Thyroid Treatment campaign on Facebook about a hospital in Kent that offers DIO2 gene test on NHS and T3 prescription if test positive

Let's hope that rolls out across the UK

[Highland49 in reply to SlowDragon]

Wow, wouldn't that be brilliant. I only found out about this gene test fairly recently (from this forum of course!) but how many others are continuing on levo only and really struggling, not knowing there may be another reason for their worsening symptoms and/or poor improvement?

[T4T3 in reply to SlowDragon]

Hi SlowDragon can you explain to me about D102 gene test.

My G P doesn’t do many tests only Tsh and t4 and T3

Tsh is v high 15 .....T3 below level required . I am on 125mg levothyroxine.

Feel really poorly GP won’t give me T3 even though I am not converting T4 to T3 adequately. I am just learning about this stuff.

Thanks

[helvella Administrator Thyroid UK in reply to T4T3]

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.

The name comes from the enzyme that this gene affects which is a deiodinase. It removes an iodine atom from a thyroid hormone molecule.

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, you are providing an excuse to dismiss what you say.

(More strictly, two SNPs on the DIO2 gene, rs225014 and rs225015.)

academic.oup.com/jcem/artic...

[T4T3 in reply to helvella]

Thank you for the correct information, that is really helpful, could you explain What SNP stands for? Many thanks

[helvella Administrator Thyroid UK in reply to T4T3]

Single-nucleotide polymorphism - explained here:

en.wikipedia.org/wiki/Singl...

Most abbreviations and acronyms used here are in my document:

dropbox.com/s/og3lmxa1dqadb...

[T4T3 in reply to helvella]

Thank you for your help 😌

[SlowDragon Administrator in reply to T4T3]

Suggest you put up a post of your own with your most recent blood test results and ranges

TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

Levothyroxine dose should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

So if TSH is 15 you need 25mcg dose increase.

You won't know if you convert well until dose has been increased until TSH is around one

Vitamin levels need testing and often need supplementing to bring to optimal levels

If you have Hashimoto's (high antibodies) then often strictly gluten free diet helps or is essential

If, once all this is done, FT3 remains low, you may need addition of small dose of T3

Getting DIO2 gene test can help show you need it too, if it tests positive

thyroiduk.org.uk/tuk/testin...

[Highland49 in reply to ShinyB]

Thanks ShinyB,

I'm off to my surgery this afternoon so will test the water. I won't be surprised if the GP doesn't know what I'm talking about, though. I'm mainly going to check in with them but also to request medical exemption certificate for the levo.

It's similar to me thinking that having high TPOs + symptoms + family history would result in treatment. Some have automatically been diagnosed but others have struggled to be listened to, like I have.

Good to be in contact with you 😊