T4 & T3 combination therapy... day 9... awesome! - Thyroid UK

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T4 & T3 combination therapy... day 9... awesome!

Lotika profile image
12 Replies

Forgive me, I am about to waffle!

I am on day 9 of an NHS trial of T4 / T3 combination therapy. I had thought it was the wrong dose and now I am not so sure...

For the first 7 days I felt a bit fuzzy, but the lingering sense of depression I have been experiencing for the last few years lifted the moment I took my first dose. Yesterday I began to feel like the old me. After 5 years of depressive fog, I had completely forgotten that one of the challenges of being “old me” was that I always used to be full of energy and a bit ADD, so much so that I had developed endless strategies for dealing with it: running, drinking(!) yoga... I recall this restlessness from childhood, so I don’t think it was ever hashis-related.

Today, I am full of beans and completely ADD again! God help you world, I might be back! We will see... I wish they could stick a needle in me now, so that I can see what the real me looks like in TSH, T4 and T3!

It is really crazy. I had forgotten... I am trying to wrap my head around the idea that 5 years of being undiagnosed and then inadequately medicated truly makes you lose all sense of who you are... Quite a thought.

Fingers crossed that things stay more or less like this. Even if they don’t, I’m closing in on the real Lotika again - OMG!! It’s been a long time!

Fingers crossed for a better year ahead for us all.

Lotika.

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Lotika
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okaykay profile image
okaykay

Nice! It’s awesome to feel the dog lift. I’ll be praying for you.

SlowDragon profile image
SlowDragonAdministrator

Brilliant news

Just read your very good and informative profile

As you have Hashimoto’s low vitamin levels need regular retesting

What vitamin supplements are you currently taking

Are you on strictly gluten free diet?

Strongly recommend you get FULL thyroid and vitamin testing after 6-8 weeks on current T3 dose

How much T3 are you currently taking?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

Also recommend getting Dio2 gene test

thyroiduk.org/getting-a-dia...

Assuming you test positive

Can be helpful if NHS want to withdraw T3 prescription

Do you always get same brand of levothyroxine?

Lotika profile image
Lotika in reply to SlowDragon

Thank you, SlowDragon!

I had a full vitamin panel recently and shared them; I am within NHS range on everything, but slightly under “our” range on Vit D and ferritin.

In terms of supplements, I take high dose vitamin C with iron and zinc, vitamin d+k, magnesium, selenium, turmeric, glucosamine, omega 3, oil of evening primrose, a multi vitamin B and I try to remember to add a spoonful of a liquid iron supplement every other day. I need to push the iron up, but I’m worried about overdoing it! I changed my vitamin d for one which has K as well in the hope this pushes that up too. I take 400iui of vitamin D a day... I’m wondering if doing 800 once a week might be an idea.

Re GF... I really struggle. I had eating disorders as a teenager and my solution involved eating whatever my body said it wanted... it still does and I don’t last for long on any eating plan. I try to be “low gluten”... and I do think it helps rid me of tummy pains. I will give it some more thought. I love cooking good food, which ought to help, but doesn’t - too many things are better with gluten! Maybe I will try to cut it out for a month entirely as a new year’s resolution and see how we go... I think GF bread does me the power of no good. So does the ordinary stuff, mind, but I seem ok on it, if I only have it very occasionally... ! Hmmm. I can do a month! I’ll miss takeaway though!

Re regular vitamin testing, I am fully up for this as I think I’ve read that having my iron higher means I might get my thick hair back! And I am worried about iron, so will need to monitor. I am planning on monitoring myself regularly on thyroid anyway: ADD me is running and yoga and weightlifting me, so i think I need to keep a watch on T3! And agreed, I should monitor the antibodies... maybe I will do my own “proper” test privately in 4.5 weeks and treat myself to the whole gamut! That would be good. My resolution for 2020 was to get on top of my thyroid health and I will keep that one for 2021 as regards vitamins and antibodies.

Good info about biotin and timing of T3 pre-tests - note to self! Yes, levo is always the same brand. I forget which, but the package is distinctive.

Thank you once again. It was you who confirmed that my T3 test result made me a poor converter and that gave me the confidence I needed to push at my endocrine appointment! I needed someone knowledgeable to say they thought it too... !

Lotika.

SlowDragon profile image
SlowDragonAdministrator in reply to Lotika

Recommend getting vitamin levels tested annually Vitamin D twice year (use monitor my health)

Just test TSH, Ft4 and Ft3 via monitor my health at tests after any dose change

Gluten free flour pretty good these days for use in baking.

Some GF bread is delicious. Waitrose brown is superb as toast (must be in GF toaster or use a toaster bag)

Lotika profile image
Lotika in reply to SlowDragon

Good thought re gene test - I missed that! I think my grandma may be a poor converter, undiagnosed :(

Buddy195 profile image
Buddy195Administrator

Hi there Lotika, I’m on week 2 of taking 2x 5mg T3 and would love to have had the eureka moment you’ve experienced. I’m not feeling any obvious changes yet, but my endo did prescribe 20mg. I’m following advice from other forum members to take it slow, after reducing my Levo from 150 to 125. It was useful to read your profile. I too have eye issues; epiretinal membrane and TED (luckily quite mild). Best wishes to you!

helvella profile image
helvellaAdministratorThyroid UK in reply to Buddy195

I think you'll find your doses are in micrograms - not milligrams! :-)

dropbox.com/s/o1r3h7oq7d7q0...

Buddy195 profile image
Buddy195Administrator in reply to helvella

Oops, you are so right! 👍

Lotika profile image
Lotika in reply to Buddy195

The visual field thing is a funny one! Apparently, your eye doesn’t repair, but your brain fills in the gaps, so I don’t experience it any more. I was convinced my dose was wrong and to be fair, it still might be. It is so hard to be patient with the medication changes isn’t it? I wasn’t expecting the eureka moment and I think there might still be some fuzziness, but then I drank 4 cans of lager last night because I unexpectedly had ADD me to deal with after 5 years and, well, I wanted to!

I hope you get your eureka moment soon. Trying things, then testing, will mean you must be closing in on it... !

Buddy195 profile image
Buddy195Administrator in reply to Lotika

Thanks Lotika, here’s hoping T3 will be beneficial to us both long term! 👍

serenfach profile image
serenfach

Just to say I am really pleased for you. When I first added T3 to the T4, I likened it to removing a wet cold heavy overcoat.

I hope you continue to feel the real you. Hug.

flitter-maus profile image
flitter-maus

Just to say I totally get it!! While not totally well yet T3 gave me “me”back. So pleased for you😊

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