T3 ONLY - Issues - Please help: Hi all, After... - Thyroid UK

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T3 ONLY - Issues - Please help

dizzy1979 profile image
26 Replies

Hi all,

After many years on Thyroid S, my NHS endo has convinced me to trial t3 only, I have been taking 20 mcg at 6.30am and 10mcg at 10pm.

I have been on this dose for approx 4 weeks, and in the last week, I have had the worst outbreak of skin blisters on my forehead and above my lip (this used to occur when i was on t4 only) and I have woken today with a pea sized lump (maybe a glad) swollen near my jawline. I have not been sleeping much probably about 5 hours, waking between 4-6am.

My Endo wont allow a blood test for a few weeks, do I increase dose, decrease dose, or just come off and back onto NDT.

I would love for this to work for me, and in the last couple of weeks, I have found my appitite to have decreased, and I feel semi human, the lack of sleep I can live with, but the coldsore type outbreaks are a nightmare, sore, tingly and unsightly. .... I dont know what to do for the best.

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26 Replies
helvella profile image
helvellaAdministratorThyroid UK

I feel for you.

Could you let us know which make of T3 you are taking? I'm sure everyone will wish to know that.

dizzy1979 profile image
dizzy1979 in reply to helvella

oh, I will have to update that information when I am at home tonight, I have no idea, but the morning dose is a tablet and the evening dose is a capsule.

helvella profile image
helvellaAdministratorThyroid UK in reply to dizzy1979

That means the evening dose is Roma (the only UK capsules).

SlowDragon profile image
SlowDragonAdministrator

but the morning dose is a tablet and the evening dose is a capsule.

Well that’s quite likely an issue in itself

Many many people find different brands aren’t interchangeable

Request 2 x 20mcg tablets and cut 2nd one in half to get 10mcg

Far cheaper than capsules anyway

Prices of tablets v capsules here

healthunlocked.com/thyroidu...

Are you on dairy or gluten free diet

How much NDT were you taking

30mcg is not much T3 if ONLY taking T3

Typical daily dose wen on T3 only is likely to be between 40mcg and 60mcg

When were vitamin D, folate, ferritin and B12 last tested

dizzy1979 profile image
dizzy1979 in reply to SlowDragon

I was on 1 and 3/4 tablets of thyroid S a day.

Do you think increasing dose will help? I've not had any heart palpatations, so don't think I am over medicated. I have been running hotter then usual, however, it has been generally very hot in recent weeks.

MrPeaPaw profile image
MrPeaPaw in reply to dizzy1979

Your thyroid S dose is roughly equivalent to 66 mcg Levo and 16 mcg Liothyronine T3

dizzy1979 profile image
dizzy1979 in reply to MrPeaPaw

I am just in t3 only now no t4

MrPeaPaw profile image
MrPeaPaw in reply to dizzy1979

Yes, I understand you are on T3 only. So am I, 40 mcg. It's not perfect but it's the best I've felt in years. I'm a bit biased, but I think you are are the right path.

dizzy1979 profile image
dizzy1979 in reply to SlowDragon

I have added 2nd page of latest bloods in April.

helvella profile image
helvellaAdministratorThyroid UK in reply to dizzy1979

Can you check the folate number? Looks to me like it might be 1.6 - but just could be 16.

dizzy1979 profile image
dizzy1979 in reply to helvella

its 1.6, it is low, The dr advised I take a suppliment.

helvella profile image
helvellaAdministratorThyroid UK in reply to dizzy1979

But I bet you weren't advised to check your vitamin B12 level before taking any folate/folic acid supplement, were you?

The problem is that you could also be low in B12. And starting folic acid when B12 is low can precipitate issues.

Starting B12 would mean you never find out how low your B12 has been. As soon as you supplement, it can affect results.

You really should have a B12 test. Start taking B12 - even a few days. Then supplement for folate.

dizzy1979 profile image
dizzy1979 in reply to helvella

I am always low in b12, my Dr gives me injections every 10 weeks x

waveylines profile image
waveylines in reply to dizzy1979

Maybe you need your B12 injections more frequently.

I always take a B complex that includes folate daily on top of my b12 jabs. I feel much better for doing that. If I don't after a week I start feeling tired weak & cold sores erupt. That's just me!

dizzy1979 profile image
dizzy1979 in reply to waveylines

that’s helpful, thank you, I’ll give that a go too

helvella profile image
helvellaAdministratorThyroid UK in reply to dizzy1979

Please have a look at the Pernicious Anaemia Society forum - here:

healthunlocked.com/pasoc

Even if you don't post there, reading for a while will probably inform you of some of the problems others have with their B12. A large proportion find the 8 to 12 weeks that their GPs are reasonably happy to provide are far too infrequent.

Stongwave profile image
Stongwave in reply to waveylines

Could you please share which brand of vitmin B complex you take?

waveylines profile image
waveylines in reply to Stongwave

I take Thorne's Basic B.There are a couple of other brands that are good too. Can't remember their names. If you asked Seaside Susie she knows them.

Stongwave profile image
Stongwave in reply to waveylines

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to dizzy1979

Which brand is your tablet T3

Strongly recommend you get /take same brand morning and evening

if your folate was deficient GP should have prescribed

What vitamin supplements are you now taking

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help maintain B12 levels between injections too

as your folate was so low you likely need a separate folate supplement as well initially

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

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 £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , 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 folate supplement (eg Jarrow methyl folate 400mcg)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

what were vitamin D and ferritin results

dizzy1979 profile image
dizzy1979 in reply to SlowDragon

morning side 20mcg Roma 10mcg.

I am going to cut my 20’s in half and have the same each day.

When I run out I’ll take 3 of the Roma per day, if you think that will be ok?

SlowDragon profile image
SlowDragonAdministrator in reply to dizzy1979

I guess you could see which you prefer that way …then get new prescription for brand that works best

Might take 2-3 months to settle after changing brand

Cheaper option is Morningside

Brightness14 profile image
Brightness14

30 mcg of T3 is short of Thyroid s 1.75 grains. by about another 10 T3. If I were you I would have increased your NDT by 1/4 grain first.

dizzy1979 profile image
dizzy1979 in reply to Brightness14

can I not just increase the t3 now?

Brightness14 profile image
Brightness14 in reply to dizzy1979

If you have enough but go slowly to find your good spot,

MrPeaPaw profile image
MrPeaPaw in reply to Brightness14

That's a good point I tried, but failed to make. The 30mcg T3 may not be sufficient to replace the NDT. (Disclaimer: I'd rather take Liothyronine only than anything else.)

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