Hypothyroid, Liothyronine and vitiligo.

[Hoopy83]

Hello,

I hope all are well.

My Hypothyroid journey spans 5 years this year.. (having just completed medical exemption certificate).

I'm still under the local Endocrine consultant, finding the right dose of liothyronine. My last amendment saw my dose decreased from 60 mcg daily to 50.. 20 mcg morning and evening, 10 mcg at midday. Previous dosage was 60mcg daily, 20mcg morning, lunch and late afternoon

In the last 3 months, I have regained weight I'd previously dropped, my first weight loss since my Hypothyroid diagnosis, fatigue and general feeling of being run down has starting to creep back in and now most recently I seem to have developed vitiligo!! Google leads me to believe is linked to Hypothyroid? The gift that keeps on giving..

Frustrated feels like an understatement..

I wondered if anyone else has experienced the same with vitiligo and how that's been managed? Slowing the spread? Though I'm led to believe this will do its own thing..

Liothyronine.. for those that are on it, how is / was your journey to finding dosage sweet spot?

I can't seem to find recommended dosages listed online throught NICE or what have you..

Any pointers, input will be greatly appreciated.

[greygoose]

I can't seem to find recommended dosages listed online throught NICE or what have you..

You cannot recommend a dose for someone, we all have different needs. So if you do find someone suggesting a dose, ignore it!

As with any other hormone, we start low and increase slowly until we find our sweet-spot. If you want to see my journey, you'll find it on my profile. But, my sweet-spot is most definitely 75 mcg - give or take the odd glitch. And I came on it by trial and error.

10 mcg was much too large a decrease all in one go - shouldn't be more than 5 mcg at a time - and just goes to show the ignorance of whomever is treating you. So, I imagine they reduced it because your TSH was suppressed and they don't know that that is normal because it's what T3 does! And if your sweet-spot is 60 mcg, then being on only 50 mcg is bound to see your hypos symptoms come creeping back it. I suggest you insist your doctor put your dose back up to where it was before. They should not be dosing by the TSH (if that's what they did), you don't need it!

[arTistapple]

I have never come across anything ‘official’ about dosage or recommendations for dosage other than - “the starting dose for Levo 50 mcg but reduced to 25 mcg if you already have an existing heart condition” or words to that effect. It’s like the issue does not exist for medics. It only adds to their deep lack of knowledge. So there is virtually no research into dosage - at least that I can find. Dose (not mentioned) up if TSH goes up and if TSH disappears as it often seems to in people taking T3 - get those ‘drugs’ reduced immediately because patient is over dosing and us now hyper. It’s obviously not scientific or it would be more precise and really medics do not seem to be equipped to treat it as an Art. Therefore dosage (to them) is mere quackery. It’s a hole in their already tiny bank of knowledge about all things thyroid. Who the heck do they think is sorting this out for them? Ah the National Guidelines. Unfortunately the Guidelines are good example of ‘pure politics’. Little in there for the patient’s benefit - but it looks like there is! Perfect.

Rant over.

Dosage information/pointers only available here and guided by experience.

[Jaydee1507 Administrator]

As others have said there is no recommended dose for T3.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

For blood testing, day before test, delay last dose of T3 so its taken 8-12hrs before blood test.

What supplements are you taking?

What are your latest results for key vitamins?

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

[helvella Administrator]

I can demonstrate that liothyronine dosing guidance is nonsense.

In the UK, the Patient Information Leaflets says:

Adults:

The dose will depend upon your

condition, ranging from 10 micrograms

to 60 micrograms daily in divided doses

The USA equivalent says:

Adults

The recommended starting dosage is 25 mcg orally once daily. Increase the dose by 25 mcg daily every 1 or 2 weeks, if needed. The usual maintenance dose is 25 mcg to 75 mcg once daily.

In both quotes, the upper end dose just happens to be three tablets a day. (UK has tablets based on 20 micrograms, USA has tablets derived from 25 micrograms).

And the lower end (starting) dose in the UK is 10 micrograms. Which is two 5 microgram tablets, one 10 microgram tablet, or half a 20 microgram tablet. In the USA, it is 25 micrograms - which just happens to be one tablet.

The UK ranges 10 to 60. The USA varies 25 to 75. Clearly, the science and research cannot support both!

My own view is that starting dose might need to be as low as 2.5. And the final adequate dose might need to be 60, 75 or higher. But the only thing that matters is whether the person is doing well on the dose they are receiving.

[J972]

Vitiligo could be caused by insufficient cortisol. Have you had this tested?