Quite new to T3 few questions guys I am in the UK

[Blanche1960]

Hi, I am at my wits end, had total thyroid removal in 2018 due to cancer but really struggling with Meds... started on 200mcg Levothyroxine gradually come down to 125 up and down every quarter but even when “in range” still feeling really unwell... difficult as have ME/CFS/Fibromyalgia as well as anxiety/depression... everything seems much worse but not sure what’s causing what! Anyway bloods was in range but still really unwell so two months ago Endo gave me a trial of T3.... was on 125 T4 but he reduced that down to 100 and added 10mcg T3 to be taken together! There was no instruction leaflet in the T3 bottle so been cutting the 20mcg T3 in half but now collected new prescription from hospital pharmacy and there’s instructions this time stating to dissolve the20 tablet and syringe 10 to take and throw rest away... said not to cut in half even though it’s scored!! Obviously I was confused so rang pharmacy, they deliberated a bit as what to do but rang me back and they said as new bloods in range (not seen them yet, got appointment Tues with Endo) to carry on cutting in half! But this has got me wondering now if I have not been taking it right, and this could be anything to do with not feeling any benefit from it, know it’s only two months, but noticed some days have high blood pressure, diarrhoea and slight palpations, (but not everyday )on top of daily headaches, constant fatigue, insomnia, brain fog,muscle aches/pain etc... anyway for the last 3 days been watering down full 20 tablet as stated and only having half of it 10mcg once a day with 100 T4 and throwing rest away (what a waste) but felt even worse, so not sure what to do as still taking same dose, maybe it’s just a coincidence!

Wondered if any of you lovely people have any advice on which way is best to take T3 and should it make much difference, and if Endo decides to keep me on same dose (which he might ) should I push for more T3 and less T4 to try even though not feeling any benefit yet...realise hard to tell without results, hopefully get them in a few days on my telephone appointment which I’m dreading!

Sorry for essay guys, just at wits end as lots people on here are or have been!

kind regards

BLANCHE

[SlowDragon Administrator]

Welcome to the forum

First.....ignore the dissolve in water - that’s just a ploy to try to waste more

Cutting T3 up is fine

Generally we recommend starting T3 slowly

Adding 5mcg (1/4 tablet) waking

Assuming that goes ok, adding 2nd 5mcg dose mid to late afternoon

Retesting 6-8 weeks later

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 5mcg of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common on levothyroxine

We need OPTIMAL vitamin levels for levothyroxine or T3 to work well

What vitamin supplements are you currently taking

When were vitamin levels last tested?

Do you have test results you can add from BEFORE starting on T3 ?

[Blanche1960 in reply to SlowDragon]

Hi slow dragon taking magnesium, vit D and tried one b12 injection, not paying for any more till try and get up to date test done with GP if not treat myself after Xmas to private test! Regarding test results before starting T3... long story, they wanted to start me on it earlier on in year but with covid restrictions couldn’t as involved more testing apparently... anyway in September Endo decided to start me on it as so unwell, said didn’t need bloods doing (was surprised )as done in July (when they reduced T4 to 125) In November rang hospital to say T3 running out and due for bloods surely with being on it for 8 wks but was told to wait while 15th Dec for upcoming oncologist appointment where bloods would be done!! That would have been 5 months in between testing, so messaged thyroid nurse at hospital and explained so unwell and surely 5 months is too long, always had bloods retested after6/8 wks on T4... she got my bloods done and speak to Endo in a couple days for results.... so the extra monitoring they were on about at the beginning of year never happened, in fact had less testing, and feeling more unwell! Will ask for results this time and post on here!

Sorry for the long story and Thankyou so much for your help!

[humanbean]

The idea of dissolving T3 in water and throwing away any that is unused is fairly recent.

I can only assume that the manufacturers were upset that so few people get it prescribed now because its so expensive, so they have tried to raise their profits again by getting people to throw some of it away.

When I was taking T3 I was cutting it into halves and quarters as necessary all the time and never had an issue with it being variable.

[Blanche1960 in reply to humanbean]

Thanks so much for this, really helpful x

[SlowDragon Administrator]

Sorry, I should have read your previous post too before answering

Next step is to get FULL thyroid and vitamin testing....see exactly where you are

Presumably you are now making sure to always get one brand of levothyroxine

healthunlocked.com/thyroidu...

[Blanche1960 in reply to SlowDragon]

Sorry should have said yes sticking to mercury pharma, T4, same as T3 Endo said lot people get on with Teva but gave me runs!

[Wired123]

My understanding is that within a few days you should know if T3 is working or not. In your case you have side effects which should go after a couple of weeks but you don’t seem to be getting the benefits of T3 either.

It would be good to see your blood results and it’s also worth considering a different brand of T3 as well just in case that helps.

An endo appointment is a must and if you can afford it, spending £300 on a private endo might be a good investment. You can take along your NHS blood tests.

Sometimes it’s good to go and see a private endo who also does NHS so you can transfer to their NHS list after.

[Blanche1960 in reply to Wired123]

Hi thanks for replying, found out on here recently about sticking to same brands, so trying to stick to mercury pharma T4... which both prescriptions of T3 have been as well from hospital! Teva T4 gave me diarrhoea!

[fuchsia-pink]

Absolutely no problem in taking levo and lio together. Just be aware that when you do your next blood tests (always as early a test as you can get in the morning) to leave 24 hours from previous dose of levo and 8 - 12 hours from lio, which may involve tweaking the timings the day or two before thee test. As others have said, there's no need to throw your meds away use a pill cutter, and finish one pill before cutting the next, so that if you don't cut that evenly, you are still getting a whole tablet's worth of meds over 2 or 4 days.

Have another test in 6 - 8 weeks and post the results [and lab ranges] here and the lovely people here will talk you through the results and whether you need to tweak levo or lio x

[Blanche1960 in reply to fuchsia-pink]

Thankyou so much for the helpful information x

[Blanche1960 in reply to fuchsia-pink]

Thankyou for your really helpful info ... get blood results this wk so post them on here, don’t usually ask what they are just leave it up to the Endo and put my faith in him, but he’s so abrupt and come out feeling so frustrated from each appointment... sure he doesn’t understand how tough things are , slowly finding lots of helpful info on here to help me understand so going to ask this time, asked for them to be posted out to me last time, all my results but never came! Thanks again