New med... : So an update. The doctor wouldn't... - Thyroid UK

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Julie88 profile image
16 Replies

So an update. The doctor wouldn't test for my FT3 he said the medical board dong acknowledge that they need the test.

However he was willing to lower my thyroxine levels to 75mgg a day and add in 20mgg of liothyronine to be taken as 10mgg in morning and another 10mgg in afternoon

Anyone been on this and seen any benefits??

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Julie88 profile image
Julie88
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16 Replies
ITYFIALMCTT profile image
ITYFIALMCTT

I have to say that being prescribed the T3 sounds like a good result and a sensible decision by the endocrinologist given your history and pattern of results.

However, I don't know about it being introduced in that fashion or how readily you can drop the levo. dosage that amount and suddenly add in the lio. as if it's a straightforward formula. My understanding is that you were previously prescribed 175/200 micrograms of levo. on alternate days and that's a huge drop that would take a lot of adapting to after several years, never mind the T3 addition.

I don't know if diogenes has an opinion.

Julie88 profile image
Julie88

Yes I was on 200mgg a day and now 75mgg with the 20mgg a day of T3..

Endro was a young doctor and said I was lucky my file landed on his desk as he is one of the only few he knows who is happy to trial T3..

Now I have been given it. I will not be letting him stop the prescription.

I have to trial till January and when I return to see him, we can chat if I feel any better.

JOLLYDOLLY profile image
JOLLYDOLLY in reply toJulie88

Hi Julie 88,

I am a bit worried about your dose. I was always on 200 mcg of T4 before my GP decided it was too much and reduced it to 75 mcg (after being on 200 mcg for most of my life and this was before T3 came into it), it caused a whole rake of problems over the next 20 years. I am still recovering now.

Ironically I am back on 200 mcg of T4 and 20 mcg of T3.

The dr's just seem to mess around with our doses as if they are sweets.

If you are not happy or do not feel well, please seek a second opinion.

Take care :)

Julie88 profile image
Julie88

My levels showed I was over supplementing on T4 and they thought it may be why I was feeling so rubbish. Everyone I speak to who also have thyroid problems are on a lot lower dosage than I was. I have some liver adnormalities that they are blaming the high levels of T4 on.

I am hopeful that the endro will up either med if required on my return. I guess like everyone it's trial and error

greygoose profile image
greygoose in reply toJulie88

No, that's not the point. The point is that levo should be decreased the same way it's increased : 25 mcg every six weeks. To suddenly drop the dose by 125 mcg could be catastrophic, totally stressing out the body. You need time to get used to changes in hormone levels.

As for the T3, the initial dose should be a quarter tablet, increasing by a quarter tablet every two weeks.

Plus, he's given you a massive decrease in dose. If we take it that T3 is three times as strong as T4, the total reduction should be 60 mcg T4, not 125 mcg.

Clutter profile image
Clutter in reply togreygoose

GG,

It's fine to reduce Levothyroxine (T4) by more than 25mcg when it is being swapped out for Liothyronine (T3) which is simply another form of replacement.

There's nothing wrong with introducing 20mcg T3 to the reduced T4 dose. My first dose of Liothyronine was 3 x 20mcg after thyroidectomy. It's forum caution to advise members to start slow at 6.25mcg when they are self medicating and adding to T4.

I agree endo may have reduced Levothyroxine dose too much because Julie88 is now taking the equivalent of 135mcg T4.

greygoose profile image
greygoose in reply toClutter

Because you think that doctor knows what he's doing more than us?

Clutter profile image
Clutter in reply togreygoose

GG,

Well I do if you're going to insist that T4 should only be reduced in 25mcg increments whether or not T3 is added or that T3 should only be introduced in 6.25mcg or 5mcg doses.

greygoose profile image
greygoose in reply toClutter

I'm not insisting on anything, just being cautious. It's all very well assuming that T3 is three times more powerful than T4, but it the person wasn't converting that T4 correctly then the T4 didn't have much power at all, and the body has to get used to T3. You've said the same things yourself in the past. So, if you have any new information, please share it with us. :)

Clutter profile image
Clutter in reply togreygoose

GG,

I've advised people self medicating T3 and NDT to start slow because some launch in and within a week or two are taking high doses.

If Julie88, after a significant T4 dose reduction, titrates T3 in 5mcg increments she will definitely become very hypothyroid as T3 builds up. As it is, her FT4 was over range so the reduction in T4 and introduction of 20mcg T3 may just offset each other.

greygoose profile image
greygoose in reply toClutter

Agreed. So, the sensible thing was not to slash her T4 in that way. Or am I wrong in that, too? Don't bother to answer that.

Julie88 profile image
Julie88 in reply toJulie88

Thanks for all the messages. I have actually taken 100 Levo today. So only a drop of 85/100 mg a day... I will see how I feel over the next week or so.. I've stopped taking levo all together in the past, so I will know if the symptoms of hypo come on...

I think 100mgg with the 20 of T3 sounds like it could be a good starting point. The endro did meantion that the T3 was a lot stronger so told me under no circumstances to try and up my dose of t3 before I see him again.

I've in the past self medicated and changed my T4 amount. But I won't be doing the same with the T3

SlowDragon profile image
SlowDragonAdministrator

My endo recommended I reduce my T4 by only 25mcg and add 2 x 5mcg, wait 6 weeks and retest

(I actually did 3 days first at 12.5mcg reduction, and 2 x 2.5mcg, before this and even that was a jolt)

then after 6 test results I increased by 10mcg without further T4 reduction.

Even this slow introduction was quite a big change

Unless your T4 is significantly too high, such a massive drop sounds to extreme, plus starting straight in at 20mcg T3 could be very tough

What about you vitamin levels too

You need to have very good vitamin D, folate, ferritin and B12 for T3 to work (or T4)

I see from previous posts you have Hashimoto's, so are you strictly gluten free, if not then you likely need to consider it, especially on T3

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

Saggyuk profile image
Saggyuk

I was taken off T4 and replaced fully by T3 many years ago. I was on 150 mcg Levo and swapped 25mcg of Levo for 10 mcg T3. I retested after six weeks and swapped another 25mcg T4 for 10mcg T3 and continued in this fashion until I was on 60mcg T3. My T3 dose reduced after going gluten free a few years ago and have now added T4 back in the last few months swapping this amount or vice versa always seemed fine to me with no swings in symptoms or major fluctuations in TSH etc.

I agree with others that I believe that was too much of a drop in the T4 and you will prob end up on the hypo side after a while.

Good he was happy to trial it though :-)

Well, how is he going to monitor you if he won't test your free T3?

Ginjams profile image
Ginjams

Hi all,

You are aware of the current consultation to remove t3 from the prescription list?

I would urge all in the UK to make your voice heard before this life changing medication is taken away.

The ITT campaign has guidance on how to fill in the consultation, a tiny fraction of us hypo folk have completed this.

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