T4/T3: I have been on 50mcg of Levo and 13mcg of... - Thyroid UK

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T4/T3

millefleur40 profile image
14 Replies

I have been on 50mcg of Levo and 13mcg of Tiromel for around six weeks now. Suffering from chronic constipation, then diarrhea, headaches every day, high anxiety and panic. Got to the stage in in bed most of the time, feeling too ill and drained to move. Off work again today and now they want to reduce my hours. I only work four hours a day in a small office. I was prescribed liothyronine by NHS endo for trial, but made me physically I'll, so went back on tiromel. Not sure where to go really - wondered if trying Thyroid-S, a ndt would be a better option? Maybe it's the synthetic stuff that isn't agreeing with me now.

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shaws profile image
shawsAdministrator

I think you may be on too low a dose? You sound very symptomatic. I am assuming your combined dose is around 100mcg.

millefleur40 profile image
millefleur40 in reply to shaws

It's 50mcg of Levo and 13mcg of Tiromel Shaws.

shaws profile image
shawsAdministrator in reply to millefleur40

I think the combined dose is equivalent to approx 88mcg of levo which might be too low for you considering you have clinical symptoms of hypo.

millefleur40 profile image
millefleur40 in reply to shaws

The Tiromel tabs are 25mcg each, so I suppose I could try going up another qtr of a tab to nearly 20mcg. I really hate all this mucking around, I know it's all trial and error, but it's trying to function whilst you're trying these things out. Thank you for your help, without this forum we would basically have nothing in the way of easily accessible input in the UK. Even if I rocked up at A & E I doubt they would put symptoms with thyroid issues! <3

shaws profile image
shawsAdministrator in reply to millefleur40

I used to think 25mcgT3 was around 100 levo but have been told it's more like 75mcg and that 20mcg of T3 is equal to around 60mcg mcg . So I think it would be fine to raise by a 1/4 and after 2 weeks raise another quarter.

I have read that nowadays the prescribed doses are too low because of trying to keep our TSH within range whereas before the blood tests/levo we took NDT (the only thing that was available) until we felt well. The dosages were around 200mcg to 400mcg.

Obviously take your pulse/temp which can be a guide to our dose.

millefleur40 profile image
millefleur40 in reply to shaws

It's crazy how higher dose some people are on! Ive always had around 100mcg of Levo (21 years) still had symptoms though, but these were brushed off as other things not linked to thyroid. I was tried on 10mcg of liothyronine + 100mcg of Levo a few years ago by endo, but that was it, it didn't work and he would change or up the dose of liothyronine (cost I think!!). It seems liothyronine is a 10mcg offer with NHS for three month trial and then if you don't say that all your symptoms are gone, they take it away!

shaws profile image
shawsAdministrator in reply to millefleur40

New research has shown that the equivalence of T3/T4 should be 1:3 and go to page 80 on this link and its the first para on the l/hand side.

tpauk.com/images/docs/reduc...

millefleur40 profile image
millefleur40 in reply to shaws

I think I saw this recently Shaws, it's USA though, UK endos won't listen to anything other than British I doubt :(

shaws profile image
shawsAdministrator in reply to millefleur40

It's good for us to know and they ignore NDT as well and made False Statements about it too.

One Endo in a Conference said that if our TSH is in range and we still have a dissatisfaction with levothyroxine we actually have a 'Somatization Disorder'. It's well seen that it's more females than males that have hypothyroidism. Men who have it don't fare well either.

Clutter profile image
Clutter

Millefleur, There are several options:

1. Reduce or stop Tiromel for a few days to see whether symptoms improve.

2. Try T3 only for 3 or 4 months to see whether Levothyroxine is the problem.

3. Try NDT. You may need to try more than one brand to find one which suits. If synthetics are the problem you will feel better on NDT. If thyroxine is the problem you won't.

millefleur40 profile image
millefleur40 in reply to Clutter

Hi Clutter, do you need to have a changeover time between Levo/tiromel combo and say Thyroid-S?

Clutter profile image
Clutter in reply to millefleur40

Millefleur, no you can switch straight over as you are already taking T4+T3. An equivalent dose will be 1.25-1.5 grains to start and you can increase in half grain increments every 2 weeks until you are on 2.5-3 grains. Hold the dose for 6 weeks and have a FT3 test before increasing further.

millefleur40 profile image
millefleur40

OK thank you. I guess Thyroid-s is the only ndt that you can just buy from A**** (lol) everything else sounds like you have to have a private prescription for then get it sent from Us or Canada.

millefleur40 profile image
millefleur40

Thank you for your reply Angelablu. It's very confusing, even after reading up on ndt. Everyone has a different opinion and there seems to be endless problems with the fillers, even Erfa and Armor. I was prescribed Armor by an NHS endo a few years ago, whilst they could still prescribe it. He threw the prescription at me in a rage and did offer any support or dosage advice. Three days into switching from Levo 100mcg to the Armor, probably half a grain dose, I had a big melt down at home whilst on my own - shaking, bathed in sweat! Scared me so much I stopped using it. Wish I had had the info I have now back then, and also support in here.

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