Coming off Liothyronine

[technogran]

Ive had thyroid probs for more than 20 years first hyperactive then following radio iodine treatment hypo, since then Ive been on Levothyroxine 125-150mg daily. I've never felt really satified with the treatment but had settle into a kind of acceptance and was self dosing at times. That is until 2/3 years ago when the doctor wanted me to reduce to 100mg cos of my blood results, based on TSH, and his fear that I develop osteoporosis, (I was 72 at the time). I tried for a little while but had multiple symptoms and felt unwell so raised the dosage again . Eventually I was sent to an Endocrine consultant who sent my blood to a Cambridge lab which determined poor conversion of T4 to T3 and was advised to trial Liothyronine treatment 10mg twice a day with the proviso that I could stop it at any time. Initially I thought it helpful but then realised I was going hyperactive with all the attendant symptoms so decided to come off and remain on the Levothyroxine at 125 mg. This was about 3 weeks ago and nowI feel weepy, depressed, tired, panicky, angry, and wonder how long it will take to feel even slightly better. I've not had a great Christmas. I now realise I shouldn't have just come off the T3 as abruptly, the consultant agreed I was hyper and wants me to stay on the T3 and 100mg Levothyroxine. I take 18 tablets a day some of which can skew the result of my blood test such as Prednisolone which I've been on for 4 years, Roactemra, Lansoprazole, Loratadine, and yearly infusion of Zoletronic acid. Can anyone give me an idea when I will feel a bit better?

[SlowDragon Administrator]

Lansoprazole is a PPI and will lower vitamin levels

We MUST Have good vitamin levels on levothyroxine or T3

What vitamin supplements are you currently taking

Request GP test vitamin D, folate, ferritin and B12

similarly any steroids can affect thyroid results

Essential to test TSH, Ft4 and Ft3

You might have needed to SLIGHTLY reduce T3

Stopping abruptly likely to make you feel very very unwell

Suggest you consider going back on to 10mcg waking and halve second dose to 5mcg

Or try 5mcg waking, 5mcg mid afternoon and 5mcg bedtime

But only reduce T3 by 5mcg per day initially

Retest after 6-8 weeks

Always test thyroid levels early morning and last dose levothyroxine 24 hours before test

Day before test last split T3 as 3 x 5mcg spread through the day, with last 5mcg approx 8-12 hours before test

meanwhile get vitamin levels tested

[SlowDragon Administrator]

Don’t reduce levothyroxine AND T3

Reduce one or the other

Have you got recent Ft4 and Ft3 results

If going to reduce levothyroxine…suggest you initially only reduce by 12.5mcg per day or maximum of 25mcg per day

Reducing from 150mcg to 100mcg is too big a reduction

[DippyDame]

Before making any constructive comment we really need your labs and relevant ref ranges.

However...

10mcg twice daily was far too high a starting dose and your body was reacting to this overdose.

That's like putting high octane racing car fuel in a Mini!!

You have already dropped the T3 so...

Three weeks on 125mcg levo only has further proved that you need T3 and once it is reintroduced you should slowly start to feel better.

T3 should be introduced again slowly until the system adjusts to the hormone....5mcg is the usual starter dose!

After 2 weeks you can add a further 5mcg....and note how you feel

(I kept a daily diary when I introduced T3 and recorded any changes in symptoms etc)

In your shoes I would remain on 125 mcg levo ...adding T3 naturally lowers T4.

Don't expect it to be a smooth progression....as you slowly add in T3 the body is likely to initially shout "yipee, feeling better" but this won't necessarily last as it realises the dose isn't high enough so the body complains( by way of returning symptoms....you may feel rubbish).

It's then time to add another 5mcg ...and wait for at least 2 weeks....the body may complain again so add another 5mcg....repeat until you reach 20mcg remain on that steady dose for 6/8 weeks then test again....

With luck you may feel better before you reach 20mcg!

TSH, FT4, FT3, folate, ferritin, vit D, vit B12...you won't need to test antibodies if you have been hyper

It is vital that these essential,nutrients are optimal

Those labs and your signs and symptoms will guide your next move....if one is required

Listen to your body it will soon tell you if something needs attention!

I'm now aged 77 and have been " round the houses" with T3 and now need high dose T3-only, I have the Dio2 polymorphism/ homozygous( from both parents) so my conversion is poor and I have a form of Thyroid Hormone Resistance which reqires me to need high dise T3-only

it takes a lot of patience and as much knowledge as you can acquire. In many cases more knowledge than medics who tend to treat by opinion rather than by science

But....

You will feel better once you reach your therapeutic dose....I did, thanks to arriving here several years ago.

Good luck

[pennyannie]

Hello Technogran :

I too had RAI thyroid ablation back in 2005 for Graves Disease and became very unwell around 8 years later.

I found no help through my surgery and hospital so started self medicating some 5 years ago.

Once I had built up my ferritin, folate, B12 and vitamin D to optimal levels I trialled some T3 with my T4 but I felt a bit turbo charged and not comfortable at all.

I then trialled Natural Desiccated Thyroid which suited me better and was a softer much smoother transition and treatment option.

NDT was the original successfully used treatment for hypothyroidism for over 100 years and contains all same known hormones as that of the human gland namely, trace elements of T1. T2 and calcitonin plus a measure of T3 and a measure of T4 in each tablet / grain.

NDT is derived from pig thyroid which are dried and ground down into tablets referred to as grains and on the back of which Big Pharma launched its own T3 and T4 hormone options and then set about claiming their market share.

NDT is still available through the NHS though I read that it isn't really taught or mentioned much at medical school maybe because of Big Pharma's financial involvement there.

20 odd years ago your doctor had both NDT, T3 and T4 thyroid hormone replacement options readily available in his remit to prescribe if an option wasn't working well for the patient but now you need to be assessed by an endocrinologist and I'm afraid financial constraints seem to outweigh medical need in some instances - hence why many on this forum have been forced to self medicate.

[Lalatoot]

Technogran Without blood results it is hard to comment. What I would say is that we need to find our own doses of levo and T3 and we find these by trial and error . The endocrinologist won't know what your body needs.

Some folks only need a little T3 added to levo. I am on 100mcg levo and 7.5mcg T3. 20mcg T3 was too big a dose for me.