DIO2 Polymorphism and self treatment help Update! - Thyroid UK

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DIO2 Polymorphism and self treatment help Update!

Flippasmile profile image
26 Replies

Hi All,

As promised for those of you following I have taken another thyroid test and this time I also did some vitamin readings. I think I know what to do next and up my levo even more. But if you have any other ideas seeing as my TSH is almost fully supressed do let me know! I have also purchased injectable B12 and will be injecting that alongside Folate when I get it, as I am feeling a little low on that front. Believe it or not the iron is the best it's ever been BUT my TSAT is lowish.

I am feeling TONNES better, but could I get EVEN more so???

TSH 0.1 mIU/L (0.27 - 4.2) -4.3%

Free T4 (fT4) 10.3 pmol/L (12 - 22) -17.0%

Free T3 (fT3) 4.9 pmol/L (3.1 - 6.8) 48.6%

T4:T3 Ratio 2.102 

Folate - Serum 5.8 ug/L

Vitamin B12 (active) 0.069 nmol/L (0.04 - 0.21) 17.1%

Vitamin D 87 nmol/L (38 - 180) 34.5%

Ferritin 110 ug/L (10 - 400) 25.6%

TSAT 24 % (15 - 50) 25.7%

HB 142 g/L (126 - 270) 11.1%

**** Changed because I am a silly.

My symptoms particularly my fatigue has improved so much. I can actually get up and do things. The lightening legs have gone completely but some muscle aches and ankle gripes remain, shoulder and back pain still linger. I think some of the back pain is due to severely weak (and energy less) core muscles.

I am still a little foggy particularly at the end of the day / end of week, but it is definitely getting better.

Any advice would be greatly appreciated and I hope this helps you as well :)

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Flippasmile
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26 Replies
SeasideSusie profile image
SeasideSusieRemembering

Who was this test done with?

Reference ranges are incorrect. Ranges don't start at zero. Was this Thriva by any chance? If so the FT4 range is 12-22 and the FT3 range is 3.1-6.8, and all the others are wrong too. The reference range is only the green bit on the coloured graph, anything in the yellow, orange or red area is out of range.

Can you add a picture of your results, either the coloured graph or the pdf that shows your results plus normal ranges.

Flippasmile profile image
Flippasmile in reply toSeasideSusie

No, that's probably me being a silly, it was with monitor my health and everything is on a scale from 0. But I do remember last time I did this it was different! DOH! I will go and change it.

SlowDragon profile image
SlowDragonAdministrator

This appears to be your first post

How much levothyroxine are you currently taking

Was test done early and last dose levothyroxine 24 hours before test

Have you tested your thyroid antibodies tested

Flippasmile profile image
Flippasmile in reply toSlowDragon

It's not my first post I last posted in January.

100mcg levo, 50mcg t3. Yes all anti bodies are fine (not there and do not suggest an auto immune disease).

Yes all the conditions of the test were met.

SlowDragon profile image
SlowDragonAdministrator in reply toFlippasmile

You tested both TPO and TG thyroid antibodies?

Day before test did you split T3 as 3 smaller doses spread through the day. Last dose Approx 8-12 hours before test

Flippasmile profile image
Flippasmile in reply toSlowDragon

Yes, for this last test I did not split my dose. For my antibody test I was not taking t3 at the time.

TPO (11) AND TG (9) antibodies test in the green
SlowDragon profile image
SlowDragonAdministrator in reply toFlippasmile

for this last test I did not split my dose

So last dose T3 was 24 hours before test?

So likely Ft3 result was significantly higher and possibly over range if had tested correctly

Flippsmile profile image
Flippsmile in reply toSlowDragon

I took my test exactly 24 hrs after taking my last dose of t3.

SlowDragon profile image
SlowDragonAdministrator

you can see here…..this is your first post

healthunlocked.com/user/Fli...

Flippasmile profile image
Flippasmile in reply toSlowDragon

well I don't know what to tell ya...this was my second post.

Last post from on Thyroid UK.
SlowDragon profile image
SlowDragonAdministrator in reply toFlippasmile

That’s Flippsmile

healthunlocked.com/user/Fli...

 Flippsmile

This is different account - called Flippasmile

Flippasmile profile image
Flippasmile in reply toSlowDragon

well who knows what the heck I did there then ... gotta love the fog! lol

SlowDragon profile image
SlowDragonAdministrator

Are you currently taking daily vitamin B complex or separate daily B12 supplements

If not suggest you try these first before considering B12 injections

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement as well as a B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week 

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

Start vitamin B complex a week or so after starting B12

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £25 (try iherb.com)

Remember to stop vitamin B complex 5-7 days before as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12

Flippasmile profile image
Flippasmile in reply toSlowDragon

I'm didn't take any B vits for 4 months to get an accurate reading. I have a previous history of mal absorption of both folate and B12 (extreme anaemia). Drops work a little but still not great so next steps is injecting myself, I had an injection last year from the Drs and my active went up to 86 and I felt brill. I have been with this for several years, and already tried everything else. Thank you for the information though, and your time.

SlowDragon profile image
SlowDragonAdministrator in reply toFlippasmile

if not already on gluten free diet or dairy free diet suggest you get coeliac blood test before trialing gluten free

And dairy free few months later

That’s an extremely high dose T3 considering you only started T3 couple months ago

When did you start adding levothyroxine

Increasing dose levothyroxine or T3 too quickly it’s extremely easy to over shoot and miss the sweet spot

Being over medicated can cause extreme fatigue

Flippsmile profile image
Flippsmile in reply toSlowDragon

I have been taking levo since October and started t3 in December I think. I'm much improved in my fatigue but obviously the fog is an issue but it's sort of separate if that makes sense.

Midnight_Voice profile image
Midnight_Voice in reply toSlowDragon

I would deprecate the writings of Chris Kresser you referenced above.

I find the information imparted by this maverick(?) functional doctor is considerably at odds with what the highly respected CDC has to say on the topic:-

cdc.gov/ncbddd/folicacid/in...

Would you agree? Perhaps at the very least, the science has moved on in the 11 years since that article was written?

SlowDragon profile image
SlowDragonAdministrator in reply toMidnight_Voice

many thyroid patients have MTHFR issues and need folate, not folic acid

Important to supplement before considering TTC

nhs.uk/pregnancy/keeping-we...

And not too much in pregnancy either

todaysparent.com/pregnancy/...

Midnight_Voice profile image
Midnight_Voice in reply toSlowDragon

Firstly, my context here is my wife’s PA; as early baby boomers, we are long past TTC considerations.

But it’s important to balance B12 injections with iron and folate supplements, for which we have been advised to use the daily 400mcg folic acid tablets normally offered as a pregnancy supplement; having read round the subject, this seemed to likely be safe and effective.

But the Chris Kresser article you quoted talks about cognitive impairment, increased risk of cancer, and makes a distinction between folic acid and folate that the CDC simply don’t (there is a difference, yes of course, but not for any practical purposes, they say).

And on MTHFR, they disagree with your assertion;

cdc.gov/ncbddd/folicacid/mt...

(Not that I know who’s right here, necessarily; I haven’t researched the various effects of those gene variants. But I note that the topic seems to be under debate, at the very least).

I know it’s hard to trust competing medical opinions, especially ones from the USA, but given the choice between one doctor’s opinion and a US Government agency with no agenda to push, I have to go with the CDC. Because not taking enough folate can be as damaging as taking too much, for us.

humanbean profile image
humanbean in reply toMidnight_Voice

I would still want to take methylfolate rather than folic acid despite what the CDC says. This link actually tells you what the body does with methylfolate and folic acid :

takecareof.com/articles/ben...

People with thyroid disease quite commonly have problems doing conversions from non-active versions of nutrients to active versions that the body can use immediately.

Did you know that folic acid was first developed and given to humans in 1943? I think it would be extremely rare for scientists to improve on nature in the context of essential nutrients that can be found in food.

You might find this link of interest :

healthline.com/nutrition/fo...

Midnight_Voice profile image
Midnight_Voice in reply tohumanbean

Yes, we have the same thing with B12, which can be given as hydroxy-, methyl- or cyano- cobalamin, and some people do better on one than on the others. But all need converting in the body; same with folates.

Actually, scientists can and do improve on naturally occurring substances all the time; while we’ve evolved to use what we find in nature, and what we find in nature has evolved as well, science can often give it a helping hand. Not always for the good, alas; many hard drugs are chemically altered versions of compounds which give less of a high - and probably less of an addiction 😢

But given it can be done, scientists have had 80 years to improve on folic acid, make something closer to naturally occurring folates; why haven’t they, do you think?

Especially as I keep getting offered links that suggest folic acid has dangers that folates don’t, even if the CDC dismisses these.

Could it be that for most people, if not quite everybody, folic acid is perfectly good enough?

humanbean profile image
humanbean in reply toMidnight_Voice

It may be that folic acid is fine for many people. But how many people actually know whether they have problems with folic acid or not? Probably very few - they just take it and assume everything will be fine.

Methylfolate works well for everyone as far as I'm aware because no conversion is required before it can be used by the body.

Folic acid, on the other hand, might cause a problem and might not. So why not take the nutrient (methylfolate) that is most easily used by the most people?

Midnight_Voice profile image
Midnight_Voice in reply tohumanbean

medscape.com/viewarticle/92...

Flippsmile profile image
Flippsmile

I am gluten free, I used to be diary free for years but it makes no difference. I have had the celiac test already with a gruelling 13 weeks having to eat it when I'm severely intolerant but not celiac. I have been sick for 20 years rwally sick for 8 I have been tested for everything, and have tried all the diets. I'm currently low carb / keto and finding it suits me well. So do you think I should add some more levo?

SlowDragon profile image
SlowDragonAdministrator in reply toFlippsmile

TSH 0.1 mIU/L (0.27 - 4.2) -4.3%

Free T4 (fT4) 10.3 pmol/L (12 - 22) -17.0%

Free T3 (fT3) 4.9 pmol/L (3.1 - 6.8) 48.6

Normally we would suggest BEFORE considering adding T3 to get levothyroxine dose high enough to bring Ft4 near top of range

And ESSENTIALLY all four vitamins at GOOD levels

Suggest you start on B12 and after week add daily vitamin B complex

Then retest TSH, Ft4 and Ft3 with last dose levothyroxine 24 hours before test, and last 1/3rd of T3 Approx 8-12 hours before test

Come back with new post once you get results

if Ft4 remains low increase Levo by 25mcg and retest in 6-8 weeks

You may then find you can/need to reduce T3. Reducing only by 5mcg at a time

Are you normally taking T3 as split dose. If not suggest you try this.

Flippsmile profile image
Flippsmile in reply toSlowDragon

Will do! Thanks for all your help!

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