DIO2 Polymorphism and self treatment help

[Flippsmile]

Hi All!

from reading your posts it seems like a lot of you are self medicating for many of the same reasons as I am.

I was diagnosed with ME and Fibro and all blood tests came back normal for thyroid. I go in and out of deficiency with Folate, B12, Iron and vit D, however they are currently all at good levels for me.

I completed my genetic test and have DIO1 and 2 polymorphism and a very significant chance of not converting according to my allele.

I had previously taken some porcine thyroid supplements and then stopped and returned in a month to very ill health so I took the decision to self medicate actual meds.

I began taking Synthroid 50 mcg to start according to the research I read it was he most common and probably prescription route. I tested after 8 weeks and all was normal (literally everything straight down the middle of the reference points) but I didn't quite feel there and still had quite a bit of fatigue and felt a bit icky from the levo?!?!

I added 25 mcg Liothyronine and started to feel MUCH better, so I doubled it to 50mcg and feel almost like a normal person, but have some fog and forgetfulness. My "lightening" leg pain has gone and almost all fatigue. I no longer feel like I want to die when I get up in the morning. It's usually an evening fog.

HOWERVER ... and this is where I need your help these are my recent blood results:

TSH 0.07 mIU/L (0.27 - 4.2) -5.1%

Free T4 (fT4) 9.6 pmol/L (12 - 22) -24.0%

Free T3 (fT3) 6.4 pmol/L (3.1 - 6.8) 89.2%

T4:T3 Ratio 1.500 

I feel that I could feel even better on 75mcg of t3, I have felt so ill for so long at this point I don't honestly know. But should I take more levo first or not? Or if you have any other thoughts / strategies please do let me know.

Thank you so much in advance for your kind and intelligent answers. This group has truly been invaluable to me.

[GlowCoach Administrator]

Welcome to the group. if you could fill out your profile it helps people to understand where you're coming from and your thyroid journey.

Can you post your 'normal' results?

Taking 50mcgs Levo often makes people feel a bit worse as it isn't enough to replace your own thyroid production. people usually get up to a reasonable 'optimal' level of Levo before adding any T3.

SMALL increments of T3 are added, say 5mcgs to avoid intolerance and allow the body to get used to it.

Your FT3 is already at 89% of the range. When did you take your last T3 before this test?

[Flippsmile in reply to GlowCoach]

Hi,

I thought I had done my profile, so if you can't see it, please let me know. My previosu results were:

TSH 2 mIU/L (0.27 - 4.2) 44.0%

Free T4 (fT4) 18 pmol/L (12 - 22) 60.0%

Free T3 (fT3) 4.7 pmol/L (3.1 - 6.8) 43.2%

T4:T3 Ratio 3.830 

My Last test was eight weeks ago (ish) 11/11/22. I try and test it regularly every 8 weeks. I also think that the excesses of Christmas might have impacted my results as well. oops.

Thank you for your help.

[GlowCoach Administrator in reply to Flippsmile]

There's nothing on your profile, cannot see anything.

Your original results don't look that bad. What were your latest vitamin results with ranges?

[Flippsmile in reply to GlowCoach]

Yes, all my vitamins are good. I inject folate every month and supplement liquid b12, and vit D. I think I accidently pressed hide on my profile! lol If you can't see anything, I am female, 38 and white British. I am very overweight, but not very mobile, that is slowly getting better though.

[GlowCoach Administrator in reply to Flippsmile]

Didn't realise folate was available as an injection. What type is it and where do you manage to find that?

You haven't mentioned ferritin.

[Flippsmile in reply to GlowCoach]

German Amazon. Ferritin also fine. I would prefer it to be a bit higher personally but it is what it is.

Photo of German brand folate vials in yellow box.

[TiggerMe Ambassador]

I'm with you on this journey, my T4 level is dropping and the mist is rolling in, I'm dealing with an NHS Endo (for the first time) at the moment who thought it good to lower my T4 dose to 100mcg 6 days out of 7, so dropping one day, as my TSH is 0.05 as apparently this will raise my TSH🙄.... I was already down to 30% having been 90% before adding T3 but thought I'd try it to see if I just didn't need T4?

I also have wonky genes

Looks to me like reasonable T4 = memory, cognitive and to a degree gut function when T3 is around 80%

When I raised my T3 to 80% = warmth, stronger slightly higher heart rate (mid 60's) and ability to function physically

I did add a little more T3 (as it was 5.7) to see if this helped but alas no... I shall be looking to raising my T4 dose once I have done the 6 week blood test....

Even though we don't convert it well it seems to bring something to the party 🤷‍♀️I'm back to nodding off in the evening too

Just sent off cortisol test to help puzzle it out

[Flippsmile in reply to TiggerMe]

Great, Thanks for your help and understanding. I will up my levo to 100mcg and see how we go. I can't continue to lose all my possessions! lol

[TiggerMe Ambassador in reply to Flippsmile]

I shall stalk you as you are just ahead of me 😉

[Flippsmile in reply to TiggerMe]

lol stalk away! It can be a very lonely and worrisome journey sometimes!

[TiggerMe Ambassador in reply to Flippsmile]

Can't it just! Thankfully here we have a great mix of news, views, experience and humour, being a bit crook is expected 😀

I have also noticed since my T4 has dropped I'm gaining a bit of weight, not sure if this is fat or mucin again which I lost a lot of when I started using T3?

[Hidden]

I would have thought that your T4 needs to be raised to bring it into the ‘normal range’. As I understand T3 is faster acting than T4 I regard T4 as the foundation hormone.

[Flippsmile in reply to Hidden]

Interesting! Thanks for your understanding. x

[AKatieD]

I am similar. Got fed up of the NDT brands failing so switched to t3 only.

Felt ok on 75 and blood tests were good there.

Then thought maybe I should add t4 too and do a combo. But it seemed to add nothing at all so gave up and have stuck with T3 only for last few years.

[Flippsmile in reply to AKatieD]

I thought I would have originally needed just t3, but considering these bloods I think Im a combo person. I am still in the process of jigging things around so you never know!

[AKatieD]

Yes, definitely worth trying it out

[Flippasmile]

Hi All,

I just wanted to update you on my progress pre blood test. This time I will be testing for all my thyroids and my vitamins. you're all welcome to take bets on what's low this time! lol My partner thinks it's iron, I think it's folate (it won't be vitamin D). I am testing next week so the results will be the week after.

After feeling VERY hungry for the first couple of weeks and a little bit icky again after increasing to 100mcg Synthroid I started to gain a little bit of energy and even at one foolish stage started to think I could do some exercise.

However, the closer it got to half term the pain and fatigue started settling in a bit more. I think after this test I will increase the t4 again, maybe even t3, but it will all depending on the results.

I am caught a little in this paradox where I think I can feel even better, but I am so deconditioned and have been ill and in pain so long I can't remember what well feels like, or if I can expect the pains to completely dissipate once I am at the correct dosage,

Anyways, I am making progress!