Stop Levo at once or reduce dose?: I'm slightly... - Thyroid UK

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Stop Levo at once or reduce dose?

KingJohnVII profile image
17 Replies

I'm slightly shocked, yet not surprised at my latest bloods. After 5 months of levo, it seems I've gone from hypo to hyper. Starting late April, I've had 50mcg for 6 weeks, then 75mcg for 6 weeks, then 100mcg for 12 weeks. That takes me to yesterday, when I finally got these results from a blood draw on 5th September:

TSH: 0.82 (0.4-2.50)

FT4: 18.4 (7.86-14.41)

FT3: 4.6 (3.8-6)

Reverse T3: 0.53 (0.14-0.54)

TT4: 117.32 (78.38-157.4)

FT4:FT3 ratio = 4

FT3:FT4 ratio = 0.25

Anti-TG: 0.9 (under 4 is ok)

Anti-TPO: 2 (under 9 is ok)

Previous results, which prompted me to start on levo, were:

20.2.24, NHS, mid-pm, not fasting: TSH 5.37, FT4 13.8 (11.9-21.6)

Then 18.3.24, private, 9am, fasting: TSH 4.47, FT4 15 (12-22), FT3 4.1 (3.1-6.8)

I felt better for about 6 weeks after starting adrenal support, B-Complex, Folate and B12 in March, then levo in April, but that wore off, and I've felt no improvement since.

My latest results make me think I've moved from hypo to mildly hyper. It seems that TSH has mostly switched off due to levo supplementation. FT4 is very high due to high Reverse T3 blocking conversion to T3. In 6 months, FT3 has gone from 27% through the range to 36% - not a great improvement.

Have I interpreted these results correctly? Can anyone confirm or correct me, or add further explanation please? My most pressing concern is whether to stop levo at once, or gradually wind it down. I have spare 50mcg and 75mcg tablets, if need be. I don't want to fall off a cliff!

Many thanks, and best wishes to all.

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17 Replies
Sparklingsunshine profile image
Sparklingsunshine

If you are hypo you cant go hyper, you can be overmedicated which judging by your FT4 being over range is what has happened. Interestingly your TSH is still in range though. So not very low or suppressed.

It looks like you are our classic poor converter. It might be that Levo monotherapy isnt the best for you and you need to add some T3 in. Having an over range FT4 isnt good for long term health. But I'm just speculating. Hopefully one of our more experienced members will advise you.

KingJohnVII profile image
KingJohnVII in reply toSparklingsunshine

Thank you. Over-supplementation and poor conversion seem to be the clearest explanation. But getting T3 prescribed will be many weeks away, if I have to be referred to an endo, then get updated bloods.

pennyannie profile image
pennyannie

Hello KJVII :

Yes, I think your understanding correct and that you 're pretty much on the money -

Are your ferritin, folate, B12 and vitamin D are optimal levels as no thyroid hormone replacement works well until these core strength vitamins and minerals are up and maintained at optimal levels ?

The logical - next best step - is a reduced dose of T4 and a small dose of T3 - Liothyronine prescribed to rebalance these two vital thyroid hormones -

You might like to double check how supportive your surgery you are in prescribing T3 -

through in the first instance an NHS endocrinologist has to instigate a trial of a T3/T4 combo and assess your needs -

openprescribing.net offers you a window into your primary care surgery and your ICB area - just enter Liothyronine as the drug in question -

however I'm not sure we have any way of seeing how successful ' new patients ' are in getting Liothyronine prescribed -

maybe check this with your own ICB area and read their statement on the idiotic system we find in place throughout the country.

KingJohnVII profile image
KingJohnVII in reply topennyannie

Thanks pennyannie. T3 from an endo may be the way forward, but it will be weeks anway. Very interesting link there to the ICBs. Thanks again.

pennyannie profile image
pennyannie in reply toKingJohnVII

No worries - Reverse T3 is actually surplus, unconverted T4 -

we all make some - and it's our body's natural way of adjusting and loosing the excess -

Reverse T3 is a natural process but obviously it's best lower in its range than going over.

SlowDragon profile image
SlowDragonAdministrator

then 100mcg for 12 weeks.

blood draw on 5th September:

TSH: 0.82 (0.4-2.50)

FT4: 18.4 (7.86-14.41)

Free T3 (fT3) 4.6 pmol/L (3.8 - 6) 

Ft3 only 36.4% through range

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

is this how you did your test?

When were vitamin D, folate, ferritin and B12 last tested

Exactly what vitamin supplements are you taking

KingJohnVII profile image
KingJohnVII in reply toSlowDragon

No, my test was late morning. I had to go into town to get a blood draw, which made fasting impractical. The test company, Genova Diagnostics, said it didn’t matter. But it was late morning and I was getting peckish. Last thyroxine was early the previous morning, so more than 24 hours before.

Last testing of vitamins, etc. was 20.2.24. I’m taking Igennus B-complex, with extra folate and extra B12. Plus now 20,000 IU D3 with K2 and magnesium.

SlowDragon profile image
SlowDragonAdministrator in reply toKingJohnVII

So next step is get another test including vitamin levels

IMPORTANT…..remember to stop vitamin B complex or any supplements that contain biotin 5-7 days before test

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

KingJohnVII profile image
KingJohnVII in reply toSlowDragon

Thank you. Appreciate the advice and the discount code!

SlowDragon profile image
SlowDragonAdministrator in reply toKingJohnVII

That’s a massive dose of vitamin D

What was last vitamin D test result

How long have you been taking such a high dose vitamin D

Test twice year when supplementing

KingJohnVII profile image
KingJohnVII in reply toSlowDragon

It sounds massive, but I’m going by Dr. Berg’s videos on YouTube. 20,000 IU is equivalent to 40 minutes in the sun. I’ve only just begun it.

SlowDragon profile image
SlowDragonAdministrator in reply toKingJohnVII

What was your vitamin D level BEFORE starting

if it was below 25nmol …..then 5000iu daily for 8 weeks or 7000iu per day for 6 weeks

Then retest

If it was higher than 25nmol, but lower than 50nmol…..then 3000iu or 4000iu might be suitable…..but for some people that could be too high a dose

Retest after 2 months

KingJohnVII profile image
KingJohnVII in reply toSlowDragon

I’m due to get a raft of things tested by my GP soon, including D3. I can make a more informed decision then. Thanks for the dosage advice.

KingJohnVII profile image
KingJohnVII in reply toKingJohnVII

Thanks, SlowDragon, but my immediate worry is whether to stop thyroxine or continue at a lower dose and phase it out. My last dose was 100 mcg on Monday 7th, so I’ve missed a day. I’m scared stiff of crashing if I stop it completely. My plan is a week on 75mcg, then a week on 50mcg. Or take it every other day, I’m not sure. Can you help with that please?

greygoose profile image
greygoose

It seems that TSH has mostly switched off due to levo supplementation.

Yes, that's what it's supposed to do. Only it's not supplementation in the normal sense of the word. Levo doesn't top-up the hormone your thyroid is making, it replaces it. The thyroid cannot make hormone without the stimulation of the TSH, and the levo is lowering the TSH so the thyroid makes less and less thyroid hormone.

FT4 is very high due to high Reverse T3 blocking conversion to T3.

No, that's not how it works. The rT3 doesn't do anything. It is high due to poor conversion. What is causing the poor conversion is anybody's guess, there could be many reasons. But you rT3 is high because your FT4 is high.

It's a safety mechanism, to stop you converting to too much T3, when the FT4 reaches a certain point, it starts converting to more rT3 than T3. But, the rT3 itself is of no importance. It is inert and only stays in your system for a couple of hours before converting to T2. So, rT3 isn't even worth testing. The test doesn't give you any information that you can't get from testing fT4/3.

KingJohnVII profile image
KingJohnVII in reply togreygoose

Thanks for the info. Worth knowing that about rT3.

greygoose profile image
greygoose in reply toKingJohnVII

You're welcome. :)

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