Confused!: Firstly sorry if you feel i have askes... - Thyroid UK

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Confused!

Sasah profile image
19 Replies

Firstly sorry if you feel i have askes this before butbi can't get my head round it and need it explaining again.

So i am lookingbto start levo dose 50 as my lates TSH was 5.3 (0.35-4.9) so sub hypo. However, my T4 was higher than ever 13.4 (9.1-17.6) end march

I know people on here have sais no good withput T3 last time i had T3 was feb resilults T3 -4.1 (2.4-6) T4 10.8 (9.1-17.6) TSH 3.5 (0.35-4.9)

So my questions - the fluctuatio s in a months seems dramatic so my TSH gone up from 3.5 to 5.3 T4 has gone from 10.8 to 13.4. From whatbi understand i am wanting a higher T4 and lower TSH. I thought thatbas the T4 was higher in my last test my TSH shoukd surely be lower?

Also still strughling to inderstand that if i start Levo next week on 50 this is likely to lower my TSH isn't this by increasing T4 as that is the medicine? But my T4 is decent. So advice has said starting on 50 things may get worse before i need ro up.my dose. But why doesn't it just enhance what my thyroid is already doing? People have tried to explain that because my thyroid may be produxing more that 50.by introduxing just 50 means i am not ln high enough dose. I don't unserstand why this stops your own thuroids produvtion and overtakes it?

I have just done another set of bloods including T3 but these may not be accepted. As GP said the need speacialist order!

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Sasah profile image
Sasah
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19 Replies
greygoose profile image
greygoose

From whatbi understand i am wanting a higher T4 and lower TSH. I thought thatbas the T4 was higher in my last test my TSH shoukd surely be lower?

But, once again, you are ignoring the possible effect of the FT3. I suspect that your FT4 has risen because less of it is being converted to T3. If the FT3 is low, the TSH will be high.

Good that you've done a test with T3. Never mind if your GP doesn't accept them, he doesn't know what T3 is, anyway, he only looks at the TSH. But you need to know.

I understand your confusion about things getting worse before they get better. But when we first started discussing all this, you were talking about starting on 25 mcg levo, and that is an entirely different matter - the dose would be much too low. So, start on 50 mcg and see what happens - it's all trial an error, anyway. And you have no way of knowing that your thyroid is producing 50 mcg T4, that was just an example I used to try and explain how it works. Obviously, I failed! :)

Sasah profile image
Sasah in reply togreygoose

Hey Grey Goose,

I am not ignoring it (T3) Just as we know not all GP's in uk are allowed to test in. My GP is actually one of the better ones and has requested everything I have asked for. So i have just had blood for T3, wth T4 and TSH and Tagb and Iron panel as you suggested. He raised the request just if labs allow them now. If not the private ones.

So guess wait for results but still and start on 50 is the plan. But I am still confused has to why the intro of 50 levo wont just compliment and add to my natural store?

Sorry if you feel you have explained just may need laymens terms for when I speak to GP.

SlowDragon profile image
SlowDragonAdministrator in reply toSasah

But I am still confused has to why the intro of 50 levo wont just compliment and add to my natural store?

Your thyroid makes Ft4 (and a little Ft3) in response to TSH (thyroid stimulating hormone) a message from the pituitary gland. Higher TSH means “make more” …..lower TSH means “make less”

Pituitary is highly sensitive to noticing how much thyroid hormone is in your blood stream

Initially for first few days starting on levothyroxine you would have “extra” Ft4 in your blood stream. But your Pituitary quickly notices this ……reduces TSH and your own thyroid production then reduces …..

So you have less thyroid hormone in your blood……but because you are taking a steady replacement dose…..your body has something reliable to work with everyday

Over 6-8 weeks on constant dose your metabolism starts to improve, you start feeling better/doing a bit more

Ft4 starts to drop a bit because your body is using it up …..TSH starts to slowly rise back up

A few symptoms start to return…..all typical and indicate that you are then ready for next increase

That’s why we wait 6-8 weeks between each dose change

Next increase is to 75mcg daily

Bloods 6-8 weeks later

Sasah profile image
Sasah in reply toSlowDragon

I get this but still don't understand wht the 50 we intoduces doesn't just cimpliment the natural supply why do we need to overtake it with levo rather than the body takes from both..Sorry if you feel you have explained it i just really dont getbwhy it switches it off

SlowDragon profile image
SlowDragonAdministrator in reply toSasah

Because that’s how it works

that’s just what happens

It’s a bio feed back loop

Otherwise pituitary would not be able to regulate how much Ft4 was in the blood

Sasah profile image
Sasah in reply toSlowDragon

But why when it can read ya natural hormones! Why can it only ready tge levo...surely tge levo can be the stable and your own T4 could flucuate to keep you balanced...as it does naturally and as the pil can't do?

Sasah profile image
Sasah in reply toSlowDragon

These was my result pre hemi in sept;2.7 TSH (0.35-4.9)

T3 4.2 (2.4-6)

T4 13.3 (9.1-17.6)

I was discaharded from ENT feb after hemi;

3.5 tsh

10.8 t4

4.1 t3

Lasted tsh is 5.3 but T4 13.4 no T3.

My question. I seamed to funtion well pre hemi... slightly raised TSH but i wss functioning fine and T4 T3 look sound. Shoukd i be aiming to get back to my more here.

greygoose profile image
greygoose in reply toSasah

Well, I do use layman's terms because I am a layman. lol

When I said you're ignoring the T3 again, I didn't mean you're not testing it, I know you've had it tested. What I meant was you're ignoring the effect it has on the TSH. You asked why your TSH was still high when your FT4 was OK. And I tried to explain that it's not just about the FT4, you also have to take the FT3 level into consideration. And if the FT3 is low, the TSH is going to be high. That's what I meant.

DippyDame profile image
DippyDame

But my T4 is decent.

Feb result was T4 10.8 (9.1-17.6)

It is in range but that doesn't mean it's decent.

The ref range compares the individuals result with a healthy group of people whose results sit within that range....we are all different

Your result is only 20% through the reference range but we aim for it to roughly approaching 75%

That low reading indicates hypothyroidism

Easy calculator

thyroid.dopiaza.org/?utm_so...

Taken in isolation your FT4 may appear ok....but thyroid hormones don't work in isolation they work together.

So, to get a picture of what is going on we need both FT4 and FT3 along with TSH which is a pituitary hormone.

TSH is basically a messenger. When the system is working correctly it reflects how much hormone is in the blood and instructs the thyroid to produce more or less hormone as is required.

Unfortunately it is not a reliable marker and should not be relied on without including FT4 and FT3

FT3 is the most important result....it is the active hormone

T4 is the storage hormone and must be converted in various tissues in the body to the active hormoneT3.

How do we know if T4 to T3 conversion is robust?

We compare FT4 and FT3...if FT4 is high and FT3 is low we usually find that conversion is poor which is causing the low FT3

If FT3 is low our health suffers, we become hypothyroid

It is complicated but as you learn more it will become clearer!

But why doesn't it just enhance what my thyroid is already doing?

Because that's not how the body works! It suppresses natural production

By adding T4 (or T3) we are replacing the hormone in the system.....not topping it up. As a result we have to work out how much replacement hormone we need, based on lab results and symptoms

(TSH alone is not reliable marker)

To do this accurately we need to measure TSH, FT4 and FT3......the problem is that doctor's do not understand this, so patients don't recover properly.....and many of them end up her looking for help from the people with lived experience!

This might help

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

I think you have to accept that exogenous hormone (T4 or T3) replaces what the body has previously produced, which has proved inadequate. That natural supply then shuts down in favour of the more reliable, effective supply of exogenous hormone

Sasah profile image
Sasah in reply toDippyDame

I meant my lastest T4 which was T4 which was 13.4 (9.1-17.6)

DippyDame profile image
DippyDame in reply toSasah

The principle is the same

Sasah profile image
Sasah in reply toDippyDame

How come some times people go hper then when body start producing to much when been on same dose for a while?

DippyDame profile image
DippyDame in reply toSasah

Maybe they have Hashi's.

Lots of info here to help you

thyroiduk.org/

SlowDragon profile image
SlowDragonAdministrator in reply toDippyDame

Excellent explanation 👏👏👏👏👏

Sasah profile image
Sasah in reply toSlowDragon

Where are you based slow dragon..

SlowDragon profile image
SlowDragonAdministrator in reply toSasah

This is a U.K. based forum run by Thyroid U.K.

Read about thyroid disease and subclinical hypothyroidism here

thyroiduk.org/if-you-are-hy...

Sasah profile image
Sasah in reply toSlowDragon

Do you know if there are any crisis numbers. I am severly depressed my hair is shedsing and you can see my scalp and i can't cope...!

DippyDame profile image
DippyDame in reply toSasah

Hope you get some help.

Take care

mind.org.uk/information-sup...

samaritans.org/how-we-can-h...

CreakingGate47 profile image
CreakingGate47 in reply toSasah

Sasah

You may be suffering from ‘information overload’ or confused about what to do next. Lots of people have tried to help on forum but if you’re depressed, you may not be able to take everything in.

If you’re in a crisis situation and are depressed, there are several options here. You may find help there. Follow the link

findahelpline.com/countries/gb

Take care

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