Liothyronine trial - 5 months in

[malohant]

Hi all

I started a trial of Liothyronine (Thybon Henning) in January, obtained through a private endo. They have been adjusting my dose as though it were levo, ie every couple of months, and have said my results show I am now properly treated - but I have had no change in symptoms.

My last results were:

TSH 0.31 (0.27-4.2)

FT4 13.2 (12-22) (12% of range)

FT3 5.24 (3.1-6.8) (58% of range)

And I am currently taking 75mcg levo once per day (7.30 am) and 5 mcg lio twice a day (7.30am and 11pm); I was previously taking 100mcg levo but it was reduced when lio was last increased. (also - in case its relevant - I'm a 38yo male)

I was under the impression that my FT3 should be a little higher yet, but the endo disagreed. I asked if I should retest in another two months and he said no point, your dose won't have changed so your results won't change.

I thought that Lio was fast-acting, ie I would see a change (reduction) in symptoms relatively quickly (once my body got used to it, of course)? How long should I expect to wait before either seeing improvement or accepting it doesn't work for me?

Sorry I'm just confused and frustrated, wondering if anyone has any advice on what I should do next.

Thanks in advance, any advice would be very much apppreciated

M x

[Yeswithasmile]

Hi.

I had the same experience as you.

Some people fair ok on levo only. Some are ok on t3 only. However there are a lot of people that need both.

I know that I need my ft4 between 50 - 60% through the range even with a low ft3, to help with a lot of symptoms. When I had a low t4 and a middle or high ft3 I felt yuk. If I knew then what I know now, with your results, I’d be aiming to raise my ft4 before adding any more t3. I’m sure you will notice a difference. Don’t under estimate the power of Levothyroxine. It is commonly found to be a balance of both thyroid hormones and it can be a very slow process to find your optimal.

[SeasideSusie Remembering]

malohant

Your endo is making a common mistake. He is not taking into account that every individual is different.

I take Levo plus T3 although not prescribed.

Trial and error, which has taken a few years of tweaking and a lot of patience, has taught me that I need both FT4 and FT3 fairly well balanced and over half way through range. I seem to be best when they're close to/around 70% through range.

Some people are fine with a low FT4 as long as FT3 is in the upper part of it's range. Plenty of us need both FT4 and FT3 over half way.

So I would say that you need your FT4 higher and your next step would be to increase your Levo, this will increase your FT4 level and in turn, depending on how much natural conversion you have, will also increase your FT3 level.

I am presuming that all your key nutrients are at optimal levels? Have you tested them recently?

[greygoose]

Well, I would definitely need my FT3 a lot higher than that. But, as Susie says, we're all different. And, until your endo understans that, he'll continue to be a bad doctor - but he's probably a diabetes specialist, anyway, isn't he? They have some weird ideas about thyroid, but don't really know much about it.

This idea of T3 being 'fast acting' is a trap that a lot of patients fall into. It's faster than levo in that it doesn't have to hang around waiting to be converted. But, it can take many weeks on the same dose to feel the full benefits. It's not instant, like aspirin.

As for T3 'not working' for you. it'll only give the desired results if you take enough of it. And, you probably aren't taking enough of it. For one thing, your TSH is not suppressed, which it usually is on T3, so your pituitary isn't happy about something. Could be your low T4 - why do these stupid endos insist on reducing the levo too much?!? - but I wouldn't bet on that one. Depends how well you convert. But, might be a good idea to increase the T4 first, just to find out.

I don't blame you for feeling confused and frustrated. I've felt like that many times. Which is why I now self-treat. Why should I allow myself to be dictated to by someone who knows less about my disease than I do? Well, now I don't!

[DippyDame]

Your levo should not have been reduced when T3 was added

Adding T3 would have reduced your FT4 in any case

Your T4 to T3 conversion looks inadequate but...

I'm surprised they didn't increase your levo first, there is plenty room to do that

That may have adequately raised your FT3

Were you advised to optimise vit D, vit B12, folate and ferritin before adding T3, to support thyroid function/ conversion.

FT3 at 58% ....may well be adequate for some people, but not all!

We generally aim to have both Frees approaching 75% through ref range with the caveat that we are all different!

Dosing is a highly personal thing.

It takes 6 to 8 weeks for a change of dose to settle into the system so patience is required...it's not " fast acting" as in headache/ paracetamol

They are most likely treating you by TSH levels which is entirely wrong ...as science proves.

Instead they should be focusing on FT4 and FT3 along with your symptoms.

When was your last dose change?

It sounds as if you are undermedicated.

What are your symptoms?

Suggest you optimise nutrients ( as above) and raise levo back to 100mcg + T3 doses.

Wait 6/8 weeks, test again and review dose

We're here to help...just ask.

Good luck

[SlowDragon Administrator]

I am prescribed T3 on NHS

My levothyroxine dose was similarly reduced by endocrinologist

I found that Ft4 was far too low and increased dose levothyroxine slowly upwards

Many people on levothyroxine plus small dose T3 need BOTH Ft4 and Ft3 at least 50-60% through range

[SlowDragon Administrator]

Previous post shows vitamin levels are good

healthunlocked.com/thyroidu...

As you have Hashimoto’s have you had coeliac blood test done

[malohant]

Thanks all - I had forgotten that FT4 needs to be above 50% too, so yes that does need addressing. Thanks for the reminder.

I have just retested my vits with my last blood test (19/03): Vit D 86 (50-200); active B12 119 (37.5-150); folate 11.88 (>3.89); ferritin 110 (30-400). I have re-upped my Vit D to 2000iu daily since.

I haven't had a coeliac test done as I took gluten out of my diet before realising I should - it causes me fatigue so I am not going through 3 months (or however long is needed) of crap just to potentially confirm I have a problem with it.

My main symptom is ongoing fatigue, and everything that comes with it - brain fog, emotional instability/oversensitiveness, trouble sleeping.

My endo does claim to specialise in thyroid, although when I saw them they were up front and said they didn't know why T3 worked but they would be happy to try a 'therapeutic trial' on the basis that I was still symptomatic. They definitely said some things that didn't quite square with what I think I understand but I thought, whatever, they are giving me a trial of T3 so I can roll with it.

However, I do need to get in touch with them regarding what happens next - if I'm not testing after another 2 months when do we review progress etc. I will ask about FT4 levels and push him to agree to increase T4 dosage. However I strongly anticipate a negative response - in which case would I be best advised to tell him I'll do it anyway? Or not tell him and do it anyway? Or follow his guidance for a further period of time?

Many many thanks again for all your help, advice and guidance on this, I cannot express how much I appreciate it.

M x

[SlowDragon Administrator in reply to malohant]

Which brand of levothyroxine are you currently taking on 75mcg

Is it same brand levothyroxine as when on 100mcg

Approx how much do you weigh in kilo.

100mcg wasn’t much for a bloke

Was test done as recommended, early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Last 5mcg dose T3 approx 8-12 hours before test

Request/insist on 25mcg dose increase in levothyroxine as 3-6 months “trial”

You should see BOTH Ft4 and Ft3 levels rise

[malohant in reply to SlowDragon]

Thanks SlowDragon

I'm on Northstar (actavis) levo, have been for a couple of years, no change.

I think I weigh about 75-80 kg but haven't checked in a while, might have put a bit on.

Test was done as per guidance here.

I will insist on increase in levo

Thank you, very much appreciated

M x

[SlowDragon Administrator in reply to malohant]

Northstar is now Accord brand (activis changed its name)

Accord don’t make 25mcg tablets

Northstar 25mcg is Teva (catches many people out)

Are you getting 25mcg Northstar or cutting 50mcg tablets in half to get 25mcg

[malohant in reply to SlowDragon]

I'm getting northstar accord 100mcg's, cutting in half and taking 100mcg and 50mcg on alternate days

[TSH110]

You’ve been set up to fail by that idiot endo