T3 only treatment guidelines?

[Ch76]

Hi all, looking for some help on my upcoming endo appointment on Thursday. Just had my recent bloods come back with a TSH of 12.59, T4 2.2 and waiting for T3 results which they didn't do at the time but needed because I take liothyronine, 20mcg twice daily. My TSH was much the same last time I visited my Endo, six months ago and although my symptoms had improved they're still there and my quality of life is suffering and my family. I've included the report from my last appointment and how my Endo is happy with my side and TSH. I'm hoping you lovely people can help me go armed with proof that I'm being undertreated, I can find NICE guidelines for treatment with levothyroxin but nothing for liothyronine. Thanks in advance x

[greygoose]

So, you have a TSH of 12.9 on 40 mcg T3 daily? That's very unusual. How do you take your T3? Do you take it on an empty stomach, leaving at least one hour before eating and drinking, etc. Just like levo?

[Marz]

You may wish to hide your name

[diogenes Remembering]

If slightly increasing your dose doesn't shift the TSH, then one might suspect the TSH test is being compromised. If so try to get a test from a different source. TSH tests are known to be interfered with by human antibodies esp against mouse type proteins.

[Ch76 in reply to diogenes]

My Tpo has been high in the past, would that cause problems? Excuse my ignorance, what are mouse for proteins?

[diogenes Remembering in reply to Ch76]

In some people,blood contains antibodies which react with mouse proteins. This can lead to interference in blood tests, because they use antibodies derived from mice to produce the tests. So your bloods antibodies react with the systems antibodies ro make a complex combination to block their action.

[Ch76 in reply to diogenes]

That's interesting and frustrating!

[SlowDragon Administrator in reply to Ch76]

There was a post earlier today about Mouse antibodies (!)

I can't find it now.....perhaps someone can add a link here

[Ch76]

greygoose, yes I take one dose first thing in the morning, wait over an hour until coffee, same in the afternoon and I take supplements we'll away from it.

[Ch76]

Marz, good spot lol 😬

[Marz in reply to Ch76]

Is it possible your other meds are compromising your T3 in some way ?

[Ch76 in reply to Marz]

Which ones are you thinking?

[Marz in reply to Ch76]

Fluoxetine ? Flouride was once used to suppress the thyroid I believe. What is Loratadine ? Ah found it - anti-histamine !

[Ch76 in reply to Marz]

Loratadine is an antihistamine. Just had a quick look at fluoxetine, seems it is really bad for thyroid function, luckily I've not taken it in a while but it might be worth mentioning if I need it in future. Thanks Marz.

[Marz in reply to Ch76]

Are your levels of B12 - folate - Ferritin and VitD - all optimal and not bumping along the bottom of the range ... If low then it could be why you need the AD's occasionally

[Ch76 in reply to Marz]

They're not optimal, as mentioned to SlowDragon but trying to improve. Unfortunately I've had a few stressful life events, counseling is helping more than pills.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate and B12

Have you had any of these vitamins tested?

If not request they are asap

On ferrous fumerate for low iron

What was your most recent ferritin result?

Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease also called Hashimoto's diagnosed by high TPO Thyroid antibodies

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP or endocrinologist for coeliac blood test first

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

drknews.com/changing-your-d...

[Ch76 in reply to SlowDragon]

Hi slowDragon, they tested PTO last year, I'm not sure if TG had been tested. I self inject b12, take supplements and controversially use sunbeds for D. My iron has been very low, trying to get it up but can't take the ferrous fumerate. When last tested it was 13, up from 7 so a slow process. Also I'm gluten and sugar free, low dairy. I'm trying to do everything I can to improve my health, really should have done it sooner.

[SlowDragon Administrator in reply to Ch76]

So your ferritin is a very big problem

Better You have recently bought out an iron supplement mouth spray

If it's as good as their vitamin D spray......it might be something to try

Eating liver or liver pate once a week, look at other iron rich foods plus a daily vitamin C to improve iron absorption

Avoiding all soya including soya lecithin

Flouride free toothpaste

When did you last test vitamin D?

There's some research suggests our too frequent washing removes much of the vitamin D made on skin

As an experiment I tested my vitamin D before and after a week in very sunny Tenerife.....out in sun a lot everyday no sunscreen .....but did swim and shower too......level of vitamin D didn't move at all.

vitamindtest.org.uk

To some extent your ferritin is likely bad because you look under medicated

On just T3 you probably need higher dose

Perhaps 3 doses per day, eight hours apart

20mcg, 20mcg and 10mcg ?

I certainly found I have to take T3 as three split doses 8 hours apart

[Marz in reply to SlowDragon]

... too much washing weakens you - an old saying - and now we know why !!

Read the other day that Beetroot contains iron - the Greeks cook the leaves too and serve with olive oil and lemon - yummy.

[Ch76 in reply to Marz]

I love beetroot, you've made me hungry.

[SlowDragon Administrator in reply to Ch76]

If you have high TPO antibodies you don't need TG antibodies tested too.

You already know you have Hashimoto's with high TPO antibodies

[Ch76]

I've been using that spray and patches which I'm not convinced will work until I have done blood done but here's hoping. I'll get my D along with that, wanted to give them a chance to work before I got tested. I'm going to try and get an increase but my Endo was not very helpful last time I saw him. He seemed anti T3.

[SlowDragon Administrator in reply to Ch76]

More likely endo is anti the cost of an increase in dose

[Ch76 in reply to SlowDragon]

Maybe that too but it's costing them to keep me ill, guess I'm still alive though but it does worry me what the long term affects of being undermedicated will cause.

[SlowDragon Administrator in reply to Ch76]

If the UK T3 was any where near cost of other countries, they'd likely be more willing to experiment with increase in dose

Price charged is falling slowly.

Down from £258 to £204 per pack 28 tablets

[Ch76 in reply to SlowDragon]

Yeah I know and I've been reminded by my Dr and pharmacist lol. I'm pleased to see the price going down though, that's a positive I wasn't aware of.

[SlowDragon Administrator in reply to Ch76]

You could try splitting your current dose into 3 doses

20mcg waking morning, 10mcg 8 hours later and 10mcg 8 hours later at bedtime

It might suit you, or it might not

[Ch76 in reply to SlowDragon]

Sounds worth a try, thank you x

[jimh111]

I wouldn't look for complex answers, it seems you may be a little undermedicated. A standard dose of liothyronine is 40 to 60 mcg bnf.nice.org.uk/drug/liothy... . You could ask for a 10 mcg increase (quarter tablet morning and bedtime) or possibly some levothyroxine. Liothyronine is no different to levothyroxine in reducing TSH, it depends upon the dose and the relative potency of liothyronine. Bringing your TSH down to around 1 or 2 might make you feel better. Liothyronine is very well absorbed so don't feel you need to starve whilst taking it.

It could be that there is interference in your TSH assay, but the current value may just be because your dose is a little too low. You had a lower TSH on the same dose a year ago which suggests the assay is OK. This presupposes you are not fiddling the result by leaving a long time between your last liothyronine tablet and taking the blood.

[Ch76]

I was actually on a lower dose, I think it was last March /April when my TSH was just under 5 and I was on 10mcg twice a day but by June my TSH was 69. I'd only started taking it in the January. I actually felt worse than I do now or I've got used to it. My last blood test I'd taken my liothyronine maybe half an hour before and the blood test in July was in the hospital, early afternoon and is only had the morning dose, would that affect results?

[SlowDragon Administrator in reply to Ch76]

Usually we say test early morning and fasting to give highest TSH

Last dose of T3 should be 8-12 hours before test

[Ch76 in reply to SlowDragon]

So does that mean my TSH could actually be higher or lower?

[SlowDragon Administrator in reply to Ch76]

If tested in morning it might have been higher

Most of us have to fight getting dose reduced if TSH is too low.

[jimh111 in reply to Ch76]

It looks like your thyroid is failing and that might explain your need for a larger dose. You should not have a blood test within three or four hours of taking thyroid tablets as it can give a false high result. When you took the tablet half an hour before the blood test it's possible you hadn't absorbed the tablet when the blood was taken. Liothyronine is absorbed in about an hour. Best to have the blood taken about half way between doses. TSH is higher in the morning but I'm happy to have my blood test early afternoon, if you don't need to try and get a higher TSH (you don't!) then why mess around. Your response to the hormone is more important than TSH.

[Ch76]

Thank you everyone for your advice today, much appreciated x