Very low TSH 0.01 - feel terrible/ help reducin... - Thyroid UK

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Very low TSH 0.01 - feel terrible/ help reducing meds.

Debbiebeynon profile image
18 Replies

Hi my TSH is 0.01 and my T4 21.2. I felt well for a while (great!) but ive tipped over and started to get overactive symptoms. I'm reducing my meds slowely but worried and dont know how to approach this. GP cluless here in 🇬🇧.

I feel appalling- my body feels like everything is going wrong ( heart, blood sugar, tingling, vertigo - feel like im on the wild ocean!) is this the small reduction in meds or because im still hyperthyroid from too much meds in me? Am i damaging my health by not reducing fast?

Anyone been in a similar position.

Thanks for your input 🙏 deb

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Debbiebeynon
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18 Replies
PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum.

TSH is suppressed and FT4 of 21.2 that could be top of range or above range depending on the lab range .

Has FT3 been tested? The active hormone. Have thyroid antibodies or folate, ferritin, B12 & vitamin D been tested recently.

Can you tell us your history?

Assume you are hypothyroid and take replacement? What type Levo only or something else? and how much? Was the dose increased gradually?

How much did you decrease by?

Debbiebeynon profile image
Debbiebeynon in reply to PurpleNails

Hi thanks for helping! I am hypothyroid and on Erfa thyroid and thyroxine meds. ( 2g and 25g 6 nights a week) Ive felt wonderful on this for about a year at higher levels but started sweating and having heart palpitations- which i put down to menopause but now i have leg tremors/ to lesser tingling and diverse heartbeats, blurry vision, blood sugar issues, fluttering sensatios in lower chest ( not heart) and feel horrendous.

Ive been lowering meds a little over a month. Thinking slow best. Am i just feeling crap from this? Tingling and exhausted and heart weird intermittently - a constant.

My only blood test were for T4 and TSH as T 3 was normal on earlier tests month prior.

Thanks deb

Debbiebeynon profile image
Debbiebeynon in reply to Debbiebeynon

Decreased erfa thyroid from 2g to 1g but same thyroxine at 25mg

PurpleNails profile image
PurpleNailsAdministrator in reply to Debbiebeynon

Please add FT4 range & FT3 result and range.

Are you saying you were on a higher dose and reduced to what you take now taking over a month?

Do you always have the same brand of levo?

Lots of alterations quickly is not recommended. Usually a small reduction of either levo or Efra is appropriate. A dose should be taken consistently and continuously for 6 weeks before reassessing.

If FT3 was normal and you felt well you do not need to reduce because of low TSH.

Debbiebeynon profile image
Debbiebeynon in reply to PurpleNails

Thanks. Ive dropped too much probably and as you say probably didnt need to. When my GP suggested it i didnt go along with it at first, as i wasn't sure. I've become so confused by it all- especially as my head is so fogged!! But i now will persue these extra tests for clarity. Thank you

Lalatoot profile image
Lalatoot in reply to Debbiebeynon

Anything containing T3 such as ERFA needs to be taken daily. Synthroid or levothyroxine can be taken as different doses on different days but not EFRA. Just incase you are taking it 6 days out of the 7.

Debbiebeynon profile image
Debbiebeynon in reply to PurpleNails

Vitamin D was very high. But no B 12 measure. I will get one. Thanks for your help

PurpleNails profile image
PurpleNailsAdministrator in reply to Debbiebeynon

Do you supplement with vitamin D?

I missed your additional post regarding reducing efra.

1239 profile image
1239 in reply to Debbiebeynon

What is your Vit D? My parathyroid surgeontold me it should be 50 but endo has just said at 110 it's perfect!

Debbiebeynon profile image
Debbiebeynon in reply to 1239

Mines 165 . I supplement and looks like I don't need to! I will see if i can get down to 110!! Thanks for replying 🙏

greygoose profile image
greygoose

Just testing TSH and FT4 cannot tell you if you're over-medicated, because you are only over-medicated if your FT3 is well over-range. It could very well be that although the FT4 is high - but is it over-range? - and your TSH is low - we don't care about that - your FT3 is low because you don't convert T4 to T3 very well. So, if you reduce your levo (T4) your FT3 will also reduce and you could now be under-medicated, and that's what's causing the symptoms.

It's often difficult to tell if symptoms are of over or under-medication because so many of them cross over. Which is why we need labs to confirm, or dispute, our suspicions. But, we need the right labs, and if there is no FT3 result, it doesn't tell us very much.

So, before you reduce any further, I would suggest you get your FT4 and FT3 tested privately - I know there's a problem getting FR3 on the NHS. And that will tell you what you need to do next. :)

Debbiebeynon profile image
Debbiebeynon in reply to greygoose

Thank you for your advice and great info. 🙏

greygoose profile image
greygoose in reply to Debbiebeynon

You're welcome. :)

Debbiebeynon profile image
Debbiebeynon

Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to Debbiebeynon

Essential to also test folate, ferritin and B12

Feeling like walking on a boat in rough water suggests low B12

When taking NDT it’s essential to test Ft3

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Ideally test after 6-8 weeks on unchanging dose

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test

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 by DIY fingerprick test

bluehorizonbloodtests.co.uk...

What vitamin supplements are you currently taking

Debbiebeynon profile image
Debbiebeynon in reply to SlowDragon

Thank you for your advice and info. Very helpful. Thank u 🙏

whatnametouse profile image
whatnametouse

make any changes gradually. 10% every 2 weeks is what i was told; ie, take 9 instead of 10 mg for 2 weeks before lowering dose another notch.

Debbiebeynon profile image
Debbiebeynon in reply to whatnametouse

Thanks for that. ive been reducing more and now going back up. My poor body is definitely complaining loudly! Thank you for posting a reply. 🙏

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