Subclinical hyperthyroid: Gp reduced levo from... - Thyroid UK

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Subclinical hyperthyroid

jeansween profile image
34 Replies

Gp reduced levo from 125 to 75 as tsh was 0.02. How long will it take to get normal tsh?

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jeansween
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34 Replies
PurpleNails profile image
PurpleNailsAdministrator

what were FT4 & FT3.?

Did you feel over replaced?

Low TSH occurs for many reason. Sub clinical means FT4 & FT3 are in range. So your GP is lowering levels unnecessarily so the TSH (the unreliable TSH) looks in range.

the TSH is a pituitary hormone, signalling the thyroid. It’s important FT4 & FT3 are taken into account too. (More so in most cases)

Adjustments should be by 25mcg. Greater alterations can provoke greater symptoms and strain to system.

Adjustments usually take 6 - 8 weeks to settle.

jeansween profile image
jeansween in reply toPurpleNails

Thanks. T4 was 20. Gp reduced because hospital has refused to do my hip replacement operation until thyroid levels are correct

PurpleNails profile image
PurpleNailsAdministrator in reply tojeansween

Do you have lab range? Ranges vary between labs.

Was FT3 not tested? Unfortunately this is often the case. There no way to tell if your conversion is good. This can be affected by low nutrients.

You can have low FT3 even if FT4 high in range.

DippyDame profile image
DippyDame in reply tojeansween

Well somebody needs to tell them that TSH is a pituitary hormone not a thyroid hormone and that after medication TSH is not a reliable marker

They should be looking at thyroid levels FT4 and FT3....

The ignorance re matters thyroid is astonishing

Has the anaesthetist been consulted?

thyroidpatients.ca/2021/07/...

jeansween profile image
jeansween in reply toDippyDame

Haven't even seen the anesthetist as won't take me any further until thyroid levels are normal. Also I am not having general aesthetic as want epidural

Shelleyblue profile image
Shelleyblue in reply tojeansween

That's negligent on thrbhospitlas part. Why are they refusing to do the operation due to only thr TSH level. They should be taking advice from the Consultant endocrinologist or referring you straight to endocrinologist not referring back to GP and canceling your op !! You need to get in touch with PALS. At your hospital and get in touch with your local MP tok. This is criminal. To cancel the op based on one test result is dreadful. There must be another reason for it !! :( I am so sorry you are being put through this - you need to email the surgeon too and ask for a definitive reason why he has chosen not to operate :( If your fT4 and fT3 are in the normal range they should not have refused to operate. :(

jeansween profile image
jeansween in reply toShelleyblue

Thanks

jeansween profile image
jeansween

Ft 3 not tested. No symptoms either

SlowDragon profile image
SlowDragonAdministrator

That’s a massive dose reduction

Possibly entirely unnecessary

You’re only over medicated if Ft4 significantly over range and/or over range Ft3

TSH is not a thyroid hormone it’s a message from pituitary

even reducing to 100mcg is large dose reduction

was last test early morning

What’s the range on Ft4

Was last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

ALWAYS test 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)

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

Exactly what vitamin supplements are you taking

Suggest you get FULL thyroid and vitamin testing done ASAP

Request GP test these now

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

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

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

jeansween profile image
jeansween in reply toSlowDragon

Levo reduced because hospital wont do hip replacement operation until tsh is normal

SlowDragon profile image
SlowDragonAdministrator in reply tojeansween

I think you will need to discuss with anaesthetist

Lots of thyroid patients have very low TSH on replacement thyroid hormone

It doesn’t necessarily mean they are over medicated

You will need to demonstrate Ft4 and Ft3 are not over range

SlowDragon profile image
SlowDragonAdministrator in reply tojeansween

Lots of anaesthetist are fine about operating with low or suppressed TSH provided Ft4 and Ft3 are not high

But this will need proving by blood tests and discussing

If TSH has been low a long time it can take months to rise or may never rise

Why TSH is sluggish - mechanism called 'Hysteresis'.

healthunlocked.com/thyroidu....

starts at the end of the first reply from Tattybogle : " To understand why TSH stays suppressed for a long time after an episode of hyperthyroidism/ overmedication, (or ANY T3 use) has finished... "

and is continued in detail much further down in another reply from me : " CONTINUED HYSTERESIS ~ Why TSH remains lower for quite along while following episodes of hyperthyroidism / overmedication .... (or any T3 use) , it is due (at least partly) to a mechanism called 'Hysteresis'.

jeansween profile image
jeansween in reply toSlowDragon

Thanks

Star13 profile image
Star13 in reply tojeansween

Levo reduced because hospital wont do hip replacement operation until tsh is normal

When was your TSH last “normal” as far as your concerned (or within the lab ranges)? If it was a long time ago you should be prepared for a long wait because the longer it’s been suppressed the longer it takes to come up- if it ever does, mine has not!

I’d find another surgeon!

jeansween profile image
jeansween in reply toStar13

About 18 months ago

Star13 profile image
Star13 in reply tojeansween

Hmm, it’s not going to be an automatic thing then just because you drop your dose your TSH will jump up. All it’s going to do is make you feel awful and not well enough to have the op in the first place. It just shows how ignorant these so called surgeons are. I’d not drop your dose but get your Endo to write to your surgeon and explain how TSH works.

jeansween profile image
jeansween in reply toStar13

Thanks

Vernonwendy profile image
Vernonwendy in reply toSlowDragon

Such fantastic information! Thanks for sharing it in such a concise way! I am extremely lucky I have an excellent endo who understands this. If I was relying on my GP (who has made her position on suppressed TSH abundantly clear every time my blood work crosses her desk) I would be screwed.

SmallBlueThing profile image
SmallBlueThing

When I stopped adding a grain of desiccated thyroid extract to my levothyroxine, after 13 weeks my TSH was still suppressed; 24 weeks after cessation my TSH was 4.3 miu/L [0.3 - 5.0]; above range at 5.8 after 38 weeks, despite a 25 mcg increase in dose.

Not a pleasant experience.

Pandora777 profile image
Pandora777 in reply toSmallBlueThing

Your TSH will be very low when taking NDT mine was when I took Thyroid S because I was underactive for a time. I wish the medical professionals would stop using the TSH as an indication of thyroid function because it is pituitary hormone not a thyroid one. It does not give an indication of your thyroid levels it is the T4 and T3 that count. Mine doesn’t even work properly now either.

Aj2690 profile image
Aj2690

Thats a big drop, make sure you get retested in 6 weeks in it has shot up. Strange that a gp has suggested such a big drop. I would have atleast gone to 100 first. Hope everything works out 💓

jeansween profile image
jeansween in reply toAj2690

Thanks

TheMudRunner profile image
TheMudRunner

I’ve nothing to add advice wise, but can add that my T3 levels are only sufficient when my TSH is at 0.19. I’d certainly challenge the “why” with your medical team, and possibly get a private blood test to determine your T4 to T3 conversion is poor (mine is). That will give you better leverage for a sensible conversation. I’d also ask for an endocrinologist to be involved - I’ve never heard of someone being denied surgery due to TSH levels before though…

jeansween profile image
jeansween in reply toTheMudRunner

Thanks

tattybogle profile image
tattybogle in reply toTheMudRunner

"I’ve never heard of someone being denied surgery due to TSH levels before though…"

it's very common mudrunner .... it's the anaesthetist's call whether they are prepared to go ahead or not . the reason is that if someone is truly hyperthyroid , it make things dangerous. (can't remember exactly what might happen off the top of my head )

unfortunately since TSH is seen as the be all and end all ... TSH of 0.02 will concern them .... a discussion needs to be had with the anaesthetist involved , because the real problem with anaesthetising hyperthyroid patients is to do with them having high T4/T3 levels .... if these are not actually high ( as is the case with many of us taking thyroid hormone replacement) , then it may be perfectly safe to go ahead.

Judithdalston profile image
Judithdalston

I’ve long had a TSH of 0.02 on comboT4 100/T3 15 treatment, and supposed to be having a full knee replacement… I’ve ground to a halt at pre assessment anaesthetic stage, but not because of TSH but because Long Covid has left my BP/HR up/down. I would have liked to have spoken to the anaesthetist to explain but that doesn’t seem to be an option…perhaps if I got through the BP hurdle it would then come back as ‘no, TSH wrong’. Incidentally seen a NHS endo recently because my GP was convinced the high HR was ‘overmedicated on Levothyroxine’ ie thyroid related, to be told ‘no’, although he would have preferred higher TSH the history of overt hypothyroidism 20 years ago and Free T3/T4 well in range (50% ish) showed I needed the 100/15 combo. Over the summer I have tried lowering the levo.from 100 to 75 mcg alongside the 15 T3, and separately altered the T3 to 10 with 100 levo… so c.6+ weeks on lower doses, made my fibromyalgia pain and stiffness much worse( plus constipation etc) but hardly touched the TSH!

jeansween profile image
jeansween in reply toJudithdalston

Thanks

tattybogle profile image
tattybogle

the drop in dose is huge jeansween. and it's likely to make you feel lousy i'm afraid.

on the plus side , such a big drop IS more likely to make your TSH rise quickly ( well , more likely than a small drop in dose would)

So if having the op done quickly is more important to you , and you can cope with a few weeks of hell to get it , then it may be worth being pragmatic ... get the TSH up fast to get the op done ASAP ,then put your dose back up a bit straight afterwards.

i find small adjustments don't have much impact on my TSH when it's very low .... but much larger adjustments can make it move rapidly.

however if you can't risk not functioning well due to being too hypo for the next few months , then lowering to 100 would be a better idea .... halving it to 75 is extremely heavy handed .

SlowDragon profile image
SlowDragonAdministrator

Reducing dose Levo is also likely to lower vitamin levels

What vitamin supplements are you taking

You want good B12 prior to any operation as anaesthetic can significantly lower B12

jeansween profile image
jeansween in reply toSlowDragon

Don't take any vitamin supplements

SlowDragon profile image
SlowDragonAdministrator in reply tojeansween

Important to test vitamin D, folate, B12 and ferritin at least annually

Good vitamin levels are important to maintain good conversion of Ft4 to Ft3

Low vitamin levels tend to lower TSH because conversion of Ft4 to Ft3 gets worse, resulting in higher Ft4 and lower TSH …..but Ft3 can be low

Many members find it essential to supplement daily vitamin D, separate magnesium and daily vitamin B complex

jeansween profile image
jeansween in reply toSlowDragon

Thank you

Lottyplum profile image
Lottyplum

Don't let Ur GP reduce your Levo by such a large drop!! When my GP did that I was SO ill! Plus your TSH should never be used in such a way - the medics make me so mad!! Walk in my shoes for a few weeks and see how you feel Mr GP! All I can say is don't be pushed around by ignorance!!

jeansween profile image
jeansween in reply toLottyplum

Thanks

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