change in Levo dosage: Hi all, Just a quickie... - Thyroid UK

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change in Levo dosage

Pitboy profile image
11 Replies

Hi all, Just a quickie if anyone has had experience, my GP wants to reduce my levothyroxine from 150 mcg to 100 mcg based on my last bloods:

Free T4 13.5 pmol/L range (10-20)

TSH 0.01mU/L(0.35-5.50)

I have no anterior pituitary output due to a adenoma resection

Any views welcome

Thanks

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Pitboy
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SlowDragon profile image
SlowDragonAdministrator

Was test done early morning and last dose levothyroxine 24 hours before test

FT4: 13.5 pmol/l (Range 10 - 20)

Ft4 is only 35.00% through range

This suggests you are perhaps not on HIGH enough dose and might benefit from dose INCREASE

Most people when adequately treated on just levothyroxine will have Ft4 at least 60-70% through range

TSH is highly unreliable at best of times…..in your case likely should be ignored completely

Dosing of levothyroxine should be based on Ft3 result, followed by Ft4

Request GP test vitamin D, folate, ferritin and B12 now

NHS rarely tests Ft3

Suggest you get FULL thyroid and vitamin testing

all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29 

randoxhealth.com/at-home/Th...

Monitor My Health also now 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/getting-a-dia...

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Come back with new post once you get results

Test results do NOT show you need dose reduction at all

If you did need dose reduction, it should only ever be done in very small steps ……eg Reducing to 137mcg and 150mcg alternate days. Reducing by 50mcg per utterly preposterous

SeasideSusie profile image
SeasideSusieRemembering

Pitboy

Are you taking Levo only?

When did you take your last dose before this test?

Changes in dose of Levo should be no more than 25mcg at a time, 50mcg is too big a jump.

Also, your FT4 is low in range at just 35% through range as you can see from the attached screenshot. The only result of lowering your dose of Levo will be to lower your FT4 level. I expect you don't feel well with such a low FT4 anyway and lowering it even further will make you more unwell.

I assume your GP is dosing purely by TSH result which is wrong, TSH is not a thyroid hormone, it's a pituitary hormone. Only the thyroid hormones - FT4 and FT3 - can tell us our thyroid status once we are on thyroid hormone replacement, TSH is really only useful for diagnosis of thyroid disease not for monitoring/adjusting dose of Levo.

I have no anterior pituitary output due to a adenoma resection

Assuming that your GP knows this then he should also know that he shouldn't be using TSH to adjust dose.

Refuse to lower your dose, and in future ask for FT3 to be tested as well, we are only overmedicated if FT3 is over range.

Pitboy profile image
Pitboy in reply to SeasideSusie

thanks both , all other bloods and results fine, don’t think I will get a at3 test, did think going off ranges it needed to be increased! Was also told didn’t matter when I took levo prior to test as is half life was 24 hrs? I am not planning to do anything yet as I will contact my Endo at Manchester( if anyone will answer the phone!), thanks again for prompt replies

greygoose profile image
greygoose in reply to Pitboy

24 hours is the half-life of T3. For T4 it's about 7 days. But I really don't see what that has to do when you take your last dose of levo, given that you are topping up your blood level every day. Your doctor really knows nothing about thyroid. :)

greygoose profile image
greygoose in reply to greygoose

Or else he's just fobbing you off for a quiet life!

Jazzw profile image
Jazzw

Your doctor clearly doesn’t understand how the thyroid-pituitary feedback loop works—because if they did, they’d know that for you, it’s broken!

TSH is a pointless test for you given your pituitary dysfunction. It won’t supply any useful information regarding dosage.

Your FT4 is nearer the bottom of the range than the top, it’s exceedingly unlikely you’re over medicated.

I definitely wouldn’t be reducing my dosage. Stand your ground!

Pitboy profile image
Pitboy

Thanks all , will hold my ground until Endo Consultant concurs ( who has been very good when you can get a reply! ) stay safe all!

Boble profile image
Boble in reply to Pitboy

I agree partially with the other reactors. I would say, go with the flow. @slowdragon is correct with the range placements of FT4, FT3 and TSH.

It all depends how your pituitary is reacting to dosage changes. This can take between 4 to 6 weeks (longer at best) to show in your bloods. Low TSH could mean your pituitary is saying there is too much Thyroxine in your body which might grant the findings of your GP. I went from an initial 50mcg to 100mcg to now 75mcg over a year. So such steps are allowed. Finetuning can be in smaller steps I guess. All via my Endo.

My results are hopping all over the place due to other issues I have such as absorption issues. So thorough testing is vital in a stable supplement regime.

Therefore I would get confirmation from your Endo (be patient!) before deciding. Your Endo will test TSH, ft4 , ft3, ferritin, folate, vit B12 +vit D3 levels. As these supplements play a vital role in a proper functioning pit gland.

Good luck! Let us know how you get on. 🙂

Pitboy profile image
Pitboy in reply to Boble

Thanks Boble, had this problem before with TSH as I dont produce any ( think they would know this ! ) I have contacted my Endo so hopefully get a reply soon , will go with advice of a consultant Endo who once told me I had to be my own advocate ( hard at my age when Drs were always right! ) but had support on here which gives me confidence!

Bearo profile image
Bearo

Did your endo set your current dose? If so, the GP has no right to change it. But maybe the endo allows the GP to control your thyroid meds? Definitely contact the endo!

Charlie-Farley profile image
Charlie-Farley

Woah 😱 as others have said- Dr clearly has not a clue to the point of being dangerous. Guidelines suggest dosing by weight- but this is only a guide. Posted link below to NHS and NICE guidelines. Lots of latitude for the medical profession they rarely use it.

healthunlocked.com/thyroidu...

I’m prescribed 150 ug of levo. I’m 15 stone dose by weight guide is 1.6 ug per Kg (or 10 ug per stone).

My bio is a case study if just how little is known. Click on my face to read 😊👍

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