Levothyroxine and Liothyronine : Hi all, I’ve... - Thyroid UK

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Levothyroxine and Liothyronine

Bushbaby83 profile image
26 Replies

Hi all,

I’ve recently switched from NDT to Levothyoxine and Liothyronine. This was because I started getting hypo symptoms and it turned out my T4 was low so my endo supplemented me with T4. Then I

Asked him to look into the possibility of reverse T3 for why I was becoming hypo again with hair falling out. He said he would switch me over to pure T3. So now I take 150mcg of levo and 20mcg Liothyronine.

Is anyone else on this combo and has it helped with hair loss, hypo symptoms, weight gain and puffiness?

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Bushbaby83
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26 Replies
Lalatoot profile image
Lalatoot

Bushbaby, many of us are on that combo. However it does take a while to find the doses that suit. For some like me it has taken 2 years of adjusting 1 dose at a time, waiting 8 weeks, blood tests and so on. On combo it is a very individual thing to find the levels of ft4 and ft3 that suit you and the doses to match.

Bushbaby83 profile image
Bushbaby83 in reply to Lalatoot

Hi Lalatoot,

Thanks so much for the info. I’m glad you have found your dose finally.

SlowDragon profile image
SlowDragonAdministrator

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

What vitamin supplements are you currently

Are you on strictly gluten free diet or dairy free diet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine or T3

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

plus both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test

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

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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

bluehorizonbloodtests.co.uk...

Bushbaby83 profile image
Bushbaby83 in reply to SlowDragon

Hi SlowDragon,

Thank you for such a comprehensive reply.

I’m actually being tested for Coeliac disease. I have been predominantly gluten free for my adult life but over the past year or so let it creep back in and that’s when the troubles started. I think my endo is only paying lip service to the reverse t3 thing. I have asked to switch also so I can try and get them on the nhs.

My folate has started to dip since eating gluten and my vitamin has been fluctuating over the last year and has been quite low at one point. Iron was high for a while but is now dipping but well in normal range and B12 was high ages ago but I was supplementing at the time.

Since all this has happened I’m now taking hair supplements, folic acid, vitamin C and Zinc, D, K2, silica, selenium, magnesium, omega three from algae, probiotic, B12 and 5HTP.

Medication wise I am on low dose naltrexone and also Hydroxychloroquine for Sjögren’s syndrome.

SlowDragon profile image
SlowDragonAdministrator in reply to Bushbaby83

Hair supplements usually contain biotin.

Also vitamin B complex contains biotin

Remember to stop taking any vitamin supplements that contain biotin a week before all blood tests as biotin can falsely affect test results

If gluten intolerant (approx 86% of Hashimoto’s patients are) then you would expect vitamin levels to start to drop if back eating gluten

Only 5% test positive for coeliac, but further 80% find gluten free diet helps or is absolutely essential

If gluten intolerant then it’s common to need addition of T3 prescribed alongside levothyroxine

SlowDragon profile image
SlowDragonAdministrator in reply to Bushbaby83

Are you splitting your T3 into 2 or 3 smaller doses spread through the day

Bushbaby83 profile image
Bushbaby83 in reply to SlowDragon

Yep. Am taking the levo in the morning and then half tablet of T3 at 12:30 and another half tablet at 16:30.

SlowDragon profile image
SlowDragonAdministrator in reply to Bushbaby83

You could try 1/2 tablet waking with levothyroxine

1/4 tablet mid afternoon, 1/4 tablet at bedtime

Many people find small dose T3 at bedtime improves sleep ….but it doesn’t suit everyone

Anthea55 profile image
Anthea55

Which NDT were you taking? I'm changing over from NDT to T4 + T3 because of side effects of NDT.

I tried Erfa and one of the reasons I gave that up was because my hair started thinning. It's one of the possible side effects of Erfa and I've seen that reported here before.

Bushbaby83 profile image
Bushbaby83 in reply to Anthea55

Oh wow, I did not know that. I was taking Erfa! 😪

Bellsonit profile image
Bellsonit in reply to Anthea55

Oh no I’ve just stared with erfa- how soon did you see that reaction? Did it improve other symptoms?

Anthea55 profile image
Anthea55 in reply to Bellsonit

Stick with Erfa - it may be right for you. You won't know until you've taken it for long enough for it to settle down.

As I see it, side effects happen to some people not to everyone. Plenty of people take Erfa. We are all different.

Bellsonit profile image
Bellsonit in reply to Anthea55

I’ve been on it 13 days now and can’t say I really feel any different - though am tired! I’m on 100mg levo and 30 of erfa - was previously on 150mg levo.

jamesal0 profile image
jamesal0

@BB why didn't you/he just up the NDT if you didn't have enough T4. NDT is 1 part T3 and 4 parts T4 - approximately. Now it sounds like you are low something if your hair is falling out.

Bushbaby83 profile image
Bushbaby83 in reply to jamesal0

Because everytime he tried that previously I would get heart palpitations. Also, in order to try and flush out reverse t3 you need to slowly increase t3. I personally think the palpitations were caused by gluten though as I don’t seem to get them when I’m not eating it but have only just pieced that together. I’ve always been predominantly gluten free but let it creep back in last year. Then I stopped responding to meds and had a whole host of issues so now being assessed for coeliac.

SlowDragon profile image
SlowDragonAdministrator in reply to Bushbaby83

For coeliac test to be worth doing you need to eat high gluten diet minimum 6-8 weeks

Gluten at every meal

Bushbaby83 profile image
Bushbaby83 in reply to SlowDragon

Yeah I did that and the blood test was negative so now getting advice from coeliac uk and coeliac forums

SlowDragon profile image
SlowDragonAdministrator in reply to Bushbaby83

It’s always worth trying strictly gluten free diet

High percentage of people benefit

Bushbaby83 profile image
Bushbaby83 in reply to SlowDragon

I know but I need to be thoroughly checked for coeliac first

jamesal0 profile image
jamesal0 in reply to Bushbaby83

On NDT you get "heart feelings" I'll call them when you are low and then when you are high you get crashing heart palps, like you are having a heart attack. On NDT you don't worry about blood tests (they are for doctor) , drive it on symptoms and how you feel. Do you have a good temperature, hands and feet don't feel cold, skin not too dry, hair not falling out, eye glass' script not altering, hands and feet not tingling, not short on breath after walking up a flight of stairs, have good energy levels, good sleep patterns.

On NDT, start on 60mg and after a few weeks add 30mg and see how you feel, then add another 30mg a month later. Keep doing this until you get hyper symptoms, then back down by 30mg. You can also split dose. I take 60 for breakfast and 60 with dinner. By taking with food you get a delayed release that lasts 4-5 hours. And stops me feeling hyper like I would if I took 120mg all at once. You can also take 120mg and then 180mg every second day to just get a smidge over 120. I chew my NDT and swallow with food or I get re-flux after a few days swallowing it with water. You just have to experiment on yourself to work out what works for you.

lidoplace profile image
lidoplace in reply to jamesal0

What did you mean about eye prescription changing ? Is this a well known effect if you have under or over treated hypothyroidism ?

jamesal0 profile image
jamesal0 in reply to lidoplace

Agree - if you are correctly medicated your prescription should be reasonably stable. But if you suddenly change alot - you should consider somethings wrong/changed on the thyroid front. I find that everything (problems) , is now thyroid related for me. Example. I had phantom vibration syndrome in my left hip for about 3 months. I increased my NDT by 30mg and it went away . Or I cant sleep, put NDT down 30mg and I sleep better. Spot the problem here.

Bellsonit profile image
Bellsonit in reply to jamesal0

Are you only on ndt? That’s a lot more than I take. I’ve recently been changed from 150mg levo to 100mg levo and 30mg erfa NDT

jamesal0 profile image
jamesal0 in reply to Bellsonit

Yes only on NDT.

2 x 60mg pills per day. Unless I'm feeling cold and I'll take 25mcg extra of Levo. For some reason Levo warms me up. But it gives me a nervous bladder. Levo is measured in mcg (micro-grams) and NDT in mg (milligrams).

100mcg of levo is about equivalent to 60mg of NDT.

Levo conversion chart
Bellsonit profile image
Bellsonit in reply to jamesal0

jamesal0Thanks for the chart, that’s useful. And it’s interesting to hear you’re only really taking ndt- seems a high dose too so great that you’ve managed to get it.

I can’t say I really feel that different taking 100 mcg levo and 30mg Ndt but it’s only been 2 weeks - I feel quite tired but I’ve had a crazy few weeks at work and now away with the kids on holiday so I’ve not really had the right conditions to monitor how I feel. In conjunction with the tablets I’m also minimising my gluten intake and feel that’s helping me feel way less bloated and puffy. I have hashis and my thyroid gland is still a little enlarged

jamesal0 profile image
jamesal0

Hi Bellsonit. NDT is funny stuff you can actually take quite a bit more gram for gram than you can Levo. I know people that take 5 x 60mg tablets per day . They seem pretty normal, but they can tolerate heaps of NDT.

If I feel tired, particularly at 4-5pm, I'll take another 30mg NDT. So some days I'm up at 150mg and then two days later I'll skip 60mg as I'm feeling Hyper. To do this you need a good stash of NDT. It's not cheep but you can buy it online. For the price of a good real coffee you can buy a days worth of high quality NDT. The other thing is there is all different flavors (brands) and sources (cow, pig etc). I experimented with the stuff for a few years. I find every batch I get through my local pharmacy is different too. I chew my caps to stop reflux, so I get to taste it and each batch tastes a little bit different. One I had recently tasted meaty. Current one tastes like it is cut with Levo - sort of synthetic.

I'm very gluten free because I'm a diagnosed Celiac. Which is the under lying reason for most hashimoto's - just my belief, many would argue not.

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