Got in a mess over reduction of T4

[Sailing14]

If possible could     greygoose     TiggerMe or anyone else offer some much needed advice.

A few weeks ago I reduced t4 to 75/100 over one week (high t4) I felt very under medicated so then increased again. I then changed to a lactose free make to see if accord was causing the acid reflux.

Recently I tried again but felt as before, and since this reduction, I have felt more unstable in my symptoms and feeling undermedicated so I am getting quite at a loss what to do.

I also saw a private endocrinologist two weeks ago (I have seen him before)) who saw the finger prick test from MMH in August and said he couldn’t be confident with the result (high over range t4) 2.5 hours after t4 tablet. T3 normal TSH slightly low. He didn’t question the tablet and never seems to regarding whether to take or not take t4 before test. He saw my NHS normal result from June (again T4 taken 2 hours before by mistake).

I asked for t4/t3 combination therapy and he said come back to see me in a month for consideration but request full bloods from GP before this. He mentioned dropping t4 to 50 mcg (from 100 mcg when adding in T3)

Can anyone give any reasons why I feel so unwell after reducing t4 and     greygoose did say it needs reducing before t3 therapy (endocrinologist didn’t seem to suggest this even if he said he could have relied on finger prick test). But I never thought to question him on this.

Also, last week, I went and had a venus blood draw privately (sent to a London Laboratory) and t4 was over range again but by not as much (I had to take the t4 tablet to resemble the finger prick test).

I would be very grateful for any further help but realise it is not straight forward due to conflicting private/NHS tests and t4 taken prior to test.

[SlowDragon Ambassador]

Ft4 would be false high test result if testing 2 hours after taking levothyroxine

Suggest you get FULL thyroid and vitamin testing after 6-8 weeks on constant unchanging dose and brand of levothyroxine

Typically Ft4 tends to reduce when T3 is added…..so unless Ft4 is actually high in range testing correctly (24 hours after last dose Levo) you probably won’t need to reduce levothyroxine at all

[TiggerMe Ambassador in reply to SlowDragon]

Ditto

[greygoose]

Pretty sure greygoose didn't say T4 needed reducing before adding T3 - and I can't find anywhere I said it in your previous posts. I might have said it may need reducing but it depends on your FT4 level, given that taking T3 reduces the FT4 anyway.

What I did see a lot of in your previous posts is talk about low stomach acid and acid reflux. Yet you are still insisting that it's the levo causing acid reflux. Why? You're hypo, you have low stomach acid, and one of the symptoms is acid reflux. Nothing to do with the levo.

I think you need to put your levo back up to where it was, and stay on it for six weeks, then retest leaving a 24 hour gap between your last dose and the blood draw - you were advised to do it that way before. And, in the meantime, start treating your low stomach acid with Apple Cider Vinager or one of the other treatments you can buy OTC - you won't get any help from your doctor with that.

[Sailing14 in reply to greygoose]

Thank you very much for your reply I posted a MMH finger prick test and you kindly replied to say T4 is high and needs reducing, but I had taken the t4 2.5 hours before and there was discussion about this causing a false high so it was difficult to tell.

I do feel overtreated even if I had taken the t4 but the endocrinologist said he is going to reduce t4 by half to add in t3 (he said he would consider) so it looks like I will have to wait until I next see him but I will not take the t4 prior to NHS test at the beginning of October.

It is so complicated with private and NHS as t4 taken or not comes up with conflicting results.

Thank you too for the advice on acid reflux. I am going to look in to your suggestions to help as I have stopped the lansoprazole now .

MMH results I previously posted a few weeks ago:

TRIODOTHYRONINE

15/08/2024

5.3 pmol/L FT3 levels normal (normal

range 3.1 - 6.8 pmol/L)

THYROXINE

15/08/2024

27.8 pmol/L FT4 levels high (normal

range 12 - 22 pmol/L)

THYROID STIMULATING

HORMONE

15/08/2024

0.32 mu/L TSH levels normal (normal

range 0.27 - 4.2 mU/L)

@ monitormyhealth.org.uk

[greygoose in reply to Sailing14]

Yes, I vaguely remember that thread but I can't find it. I think I said your FT4 was too high, and that's not a good thing - it needed reducing anyway, even without the possibility of taking T3. But when I said that I didn't know you'd taken your levo just before the blood draw, so all you'd tested was the dose you just took, not what is normally circulating in your blood.

Logically, if your FT4 was really over 27, your TSH would be a lot lower. So maybe I should have realised something was not right.

Anyway, what's done is done and now you have to look to the future and straighten the mess out. And the most important thing is to test correctly next time - never mind about comparing other test results that have also been done wrongly.

So:

- early morning blood draw, before 9 am

- fast over-night

- leave a gap of 24 hours between your last dose of levo and the blood draw.

You may feel over-medicated but they could actually be symptoms of under-medication, because the symptoms can be the same. But the only way to tell is to do the test correctly.

[DippyDame]

Ultimately, with hypothyroidism, it's up to the patient to ensure testing is done correctly.......it shouldn't be, but it is!

You cannot chop and change the dose after only a short time....it takes 6+ weeks for a new dose to settle anything less and the system is confused and results are not reliable. Testing protocol must be adhered to.

T4 dose does not (usually) need to be reduced when adding T3....in any case T3 naturally reduces both TSH and FT4. It is important to read replies/ advice carefully.

I had to take the t4 tablet to resemble the finger prick test).

No! You had to follow advice previously offered re testing/ dose timing. Your method would give a false high reading which is of no use

The reason you feel unwell is most likely because you are now undermedicated

You now need to be on a steady dose of T4 ( say 75mcg) every day for 6 weeks then have a full thyroid test the results of which will guide your required dose.

Expect to feel underpar as you start to correct your dose!

There is no quick fix, that was the most helpful advice I was given at the beginning of treatment....it absolutely takes time and patience. Rushing leads to failure!

Post those new labs if you wish advice

Good luck!

[Sailing14 in reply to DippyDame]

Thank you for your reply and advice.

I can’t carry on like this as I feel awful. If I reduce to 75 mcg that is a reduction (from 100 mcg) as previously mentioned on here as I may be over replaced and it is causing these symptoms.

Would you agree that would be okay to do?

[DippyDame in reply to Sailing14]

You need to decide on a dose, ( yes 75mcg!), and hold that strictly for 6 weeks to allow the hormone to settle in your system.

Don't think of testing to see how things are going....before 6 weeks!!

Test after the 6 weeks, again strictly following advised protocol...see greygoose's advice.

Be prepared for an iffy time....but you already feel awful so stick it out for a bit longer.

It's hard....been there....but it's the only way to move towards establishing your therapeutic dose.

It's a new start....forget the muddle you are leaving behind!

You know now what you need to do so don't be side tracked by medics or things you may read.

The hardest thing is possibly being patient, but trying to take a short cut will be a waste of time and will just put you back to square one.

We're all here to help if you have a wobble...just ask.

[jgelliss in reply to DippyDame]

It never made any sense that T4 automatically gets reduced by Dr's when adding some T3 .

[DippyDame in reply to jgelliss]

Agree!