Testing for DIO1 and DIO2 gene defects - Thyroid UK

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Testing for DIO1 and DIO2 gene defects

PaulRobinson profile image
14 Replies

I have written a couple of blog posts recently which I thought might be relevant to people here.

Here is the first one:

recoveringwitht3.com/blog/w...

Here is the second one (which also references the first):

recoveringwitht3.com/blog/t...

Best wishes,

Paul

P.s. if it is a problem posting links like this then please just delete my entire post. I didn't want to have to copy all the text out each time.

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PaulRobinson profile image
PaulRobinson
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14 Replies
trelemorele profile image
trelemorele

Fantastic, thanks 👍

Marz profile image
Marz

Thank you Paul. Good to see you here !

Tile profile image
Tile

Dear Paul. T4 isnt inactive it is needed.to convert Vit B2 into FAD. I am sure there are many other needs for T4 they just haven't found them yet. Makes sense why even have T4 why not just T3...they found one of the probably many uses.

PaulRobinson profile image
PaulRobinson in reply to Tile

T4 may indeed have some small effects but the net net is that for those people who simply feel ill on it the benefits of using T3 alone far outweigh any small effects that T4 does have. I know many total thyroidectomy patients who have been on T3 alone for many years and are truly well. I have no thyroid left and I am well on T3 alone (far more well than many on T4 or combination therapy who struggle on with problems). I have also spent time talking to thyroid researchers who have agreed that people can do extremely well on T3 only if they need to go this route. So, T4 is relatively inactive by comparison to T3.

PaulRobinson profile image
PaulRobinson in reply to Tile

p.s. methylfolate is often on my suggested list of supplements also (which gets around any potential issues with this anyway). I am yet to encounter any issues with lack of any T4 that have any consequences that don't have an easy solution. However, it is also worth remembering that my approach with information to people is that they should always try to see if they can get well with thyroid treatments in this order: T4 -> T4/T3 (or NDT) -> T3 only. T3-Only being the treatment of last resort. There are many serious issues that sometimes cannot be worked around that do necessitate lower levels of T4 and higher levels of T3 (regardless of what most of the doctors in the UK seem to still believe).

I am absolutely not against T4. But personally, if I add even 10 mcg of T4 to my regime I become seriously ill within a week. So, T4 is simply NOT an option for me. There are others in the same situation.

Tile profile image
Tile in reply to PaulRobinson

I have taken 200mcg of levo with absolutely no sides. No anxiety no high blood pressure nothing. Maybe bc I was treated when my TSH was 65. Maybe bc ppl are treated way earlier with lot lower TSH. Don't think it's the T4 in levo must be something else. I wish I felt the levo even more.

PaulRobinson profile image
PaulRobinson in reply to Tile

I was treated when my TSH was 60-70 also. We are all different. That's my point. What works for one person may not work for another. I have tried different T4s and NDT and none work.

I am pleased that you have your treatment solution that works for you. I am pleased when any thyroid patient has that - that's the most important thing. It is a 'whatever works for you' disease, not a 'one size fits all' one.

helvella profile image
helvellaAdministratorThyroid UK in reply to Tile

Please explain what is FAD?

Tile profile image
Tile

Feeling optimal doesn't mean optimal health. Ppl can feel optimal on many drugs that are far from optimal or far from causing actual optimal health. 2nd time I posted this.

Angel_of_the_North profile image
Angel_of_the_North in reply to Tile

I'd rather feel well so I can function day-to-day than have perfect bloods, feel dreadful and have no life.

Tile profile image
Tile

Maybe ppl should get their FAD levels checked before they dismiss T4. Homocysteine levels too. Ps I feel optimal now at this moment but I bet I am not optimal.

PaulRobinson profile image
PaulRobinson

Feeling rubbish on T4 does mean feeling rubbish though. There is no point in having perfectly optimal methyl folate (in part produced from active B2 which is also known as FAD) if you feel dreadful on T4. That's my point. For some people who basically get dreadfully high rT3 and low FT3 on T4 therapy (because for example they simply cannot make good enough D1 and D2 deiodinase enzymes), the choice to avoid or reduce T4 is a no-brainer if they just feel ill on it with low metabolic rate.

There is a danger of thinking that what works for 'me' will also work for someone else. I learnt that error years and years ago when I started to work with thyroid patients. Having worked with thousands of them now over 10 years, I know for a fact that we all have our own problems that need solutions that work for us.

In this specific case, the active B2 (FAD) which might be low when someone has zero T4 may or may not cause any real issue for the person. Plus it can be worked around with methyl folate supplementation.

I will stay out of this thread now. I can't say any more about it.

Tile profile image
Tile

No folate wouldnt do it. Folate is B9. Good for lowering homocysteine. Im not arguing against you using T3 its POWERFUL and added on to T4 could be too much. Just be aware that there could be some real unexplored reasons for T4 ...makes sense why have the body hv it just to convert it into T3 what a waste. Glad researchers felt the same and this is probably only the tip of the icebetg.

Tile profile image
Tile

Read that obese ppl wout any thyroid issues have the highest FT3 but that doesn't give them optimal health far from it. Also read tht ppl w optimal health have higher T4 and low normal FT3. I was surprised when I read this esp that obese ppl have higher FT3. Another thing to ponder. There has to be lot more uses for T4.

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