is it worth trying t3?: Please see my last post... - Thyroid UK

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is it worth trying t3?

53 Replies

Please see my last post for some context.

I am just feeling so lost and wondering if t3 might be my answer?

Levo only seems to calm some of my symptoms but also brings side effects I cannot tolerate. Levo just pushes my t4 over range and my t3 doesn’t budge and is actually lower on levo than it was before starting it.

So just feeling in a complete catch 22 situation.

I was diagnosed with subclinical hypo in feb this year but my Tsh has been bouncing up and down a lot prior to then. I have been stabilising on levo since then but 75mcg pushes my t4 over range and makes me feel unwell and 50mcg doesn’t seem enough to raise my t4 anymore than what it was pre meds.

I’ve been working hard on improving vitamins too but I’m just starting to doubt if

Levo is even the answer for me?

I have just resigned myself to the fact that I’m always going to feel unwell one way of another which is a pretty bleak outlook really.

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53 Replies
TiggerMe profile image
TiggerMeAmbassador

You'll get there... why not compromise and go with 62.5mcg? Hopefully as your ferritin, B12 and folate improves so will your conversion 🤗 your FT3 isn't terrible

It is a tedious job getting vits and mins optimised but makes a huge difference

in reply toTiggerMe

Yes you’re right it does feel tedious downing all these supplements everyday but they’re definitely doing something! My mood is definitely much better now vit d isn’t tanking!

I think my plan is to try 62.5mcg but figured I’d start slow and work it up a bit more cautiously. I wonder if maybe my gp didn’t give 50mcg enough time as they did blood test after 4 weeks which is a tad early!

TiggerMe profile image
TiggerMeAmbassador in reply to

Good idea, some people find splitting the dose first thing and bedtime gives a smoother ride and some find alternate day increases to start with better... I'm afraid you need to experiment 🤗

Supplementing does make all the difference and as you climb back up that slippery slope you do start to slowly shed symptoms along the way... other ones tend to take their place but a change is as good as a rest 😅

in reply toTiggerMe

I really hope to be symptom free, I’m only 31 and really don’t want to continue feeling like this forever :( I want to live my life and get back to work properly. :(

bandicoot66 profile image
bandicoot66

I found t4 on its own didn't work for me so I was tested , after insistence, for t3. I was low and my gp prescribed Liothyronine.

in reply tobandicoot66

I just feel like my

Gp will argue it’s working because my Tsh and t4 are now in range…:(

SlowDragon profile image
SlowDragonAdministrator

suggest you reread this previous post of yours

healthunlocked.com/thyroidu...

Your vitamin levels were very low, it will take time to improve

Which brand of levothyroxine are you taking

increase by 12.5mcg daily (cutting 25mcg in half)

Get weekly pill dispenser to keep pills and cut halves in

Suggest you increase to 62.5mcg daily…..perhaps split as 37.5mcg in morning and 25mcg at night (cutting 50mcg in half)

Have you had thyroid ultrasound yet

ALWAYS worth trying strictly gluten free diet

in reply toSlowDragon

I have re read and continue with my vitamins. The reason why I’m wanting to drop to 50 is that my joint pain and limb weakness is so bad at the moment so wanting to be a bit more cautious with increases. It’s defintrly levo that’s causing it. Also my gp tested a bit early when I was on 50mcg before so thought it would be sensible to give it the full 6 weeks, maybe a little longer to see what the next step is.

I have a pill cutter I’m using already to lower dose. I often eat late at night so I’m not sure taking half at night would be useful.

I haven’t had an ultrasound because gp doesn’t think it’s neccesary and I cannot afford one having been out of work now for months.

I have been gluten free for over a decade already.

I am on teva but any brand seems fine for me.

SlowDragon profile image
SlowDragonAdministrator in reply to

Joint and limb pain can be due to being under medicated for thyroid

But could be Teva

Teva upsets many people

in reply toSlowDragon

But I don’t appear to be under medicated because 75mcg pushs me nearly over range on t4.

Plus this isn’t an issue when I’m not taking levo.

Joint limb pain and involuntary movements all started creeping in whilst taking 50mcg which was accord and I did try taking 75 as accord in 25 & 50.

I’m just confused because my t3 was good prior to taking levo…

SlowDragon profile image
SlowDragonAdministrator in reply to

I’m just confused because my t3 was good prior to taking levo…

This is typical on levothyroxine

A normal working thyroid makes 80-90% Ft4 and 10-20% Ft3

When thyroid is struggling….Ft4 levels drop (storage hormone) and TSH rises. Higher TSH drives more conversion of Ft4 to Ft3 (active hormone)

On just levothyroxine (Ft4) TSH drops, your own thyroid stops working so hard…..and eventually stops completely

Ft4 rises…..Ft3 drops

Low Ft3 results in lower stomach acid, poor nutrient absorption and vitamin levels dropping

For good conversion of Ft4 to Ft3 we need GOOD vitamin levels

Many (most?) on levothyroxine need to supplement vitamin D, magnesium, vitamin B complex continuously to maintain vitamin levels

in reply toSlowDragon

My ft4 prior to levo was always around 16-17 too. It was just my TSH which was bouncing all over the place and with it bringing some crappy symptoms.

in reply toSlowDragon

these were my results just before I started Levo.

My results just before starting levo
SlowDragon profile image
SlowDragonAdministrator in reply to

Recent results show poor conversion and low vitamin levels …..extremely common.

Total B12: 331 (145-569)

Ferritin 37 (30-400)

Folate serum: 15.4 (8.83-60.8)

Next step is staying on current dose levothyroxine and improving low B12, folate and ferritin

in reply toSlowDragon

I have had low ferritin all my life so not sure there’s much I can do about it but will keep trying.

It’s just tricky because any kind of iron supplement causes me digestive upset. :(

SlowDragon profile image
SlowDragonAdministrator in reply to

Low Iron implicated in causing hypothyroidism

healthunlocked.com/thyroidu...

Have you done full iron panel test to check iron, Transferrin saturation etc

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

Have you tried iron patches

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

in reply toSlowDragon

Unfortunately I cannot afford more

Private tests at the moment.

The last iron panel I had was in ‘22 pre levo. I’ll try and attach a pic of them:

I haven’t tried iron patches as wasn’t sure if they’d be an issue alongside levo?

Iron panel
SlowDragon profile image
SlowDragonAdministrator in reply to

Request GP retest Full Iron panel as last tested in 2022 and previously TIBC over range and ferritin low

in reply toSlowDragon

I will try but to be honest I don’t think they will do it as they haven’t accepted any of my private bloods so far and I only got this done by a private

Gp.

Hashihouseman profile image
Hashihouseman

levothyroxine alone can actually limit or even reduce free T3, particularly if a single dose is too much for your thyroid metabolism (which is all too common). As people have suggested, splitting T4 doses may help and yes T3 supplement may be the answer, particularly if you do not convert T4 - T3 well, as evidenced by blood test results and symptoms. If free T3 does not normalise (around 4.5-5.0) with levothyroxine doses that yield no more than 16 -18 free T4 then that should make a good case for a GP to prescribe T3, and it shouldn’t take much T3 (eg c. 5 mcg) to normalise free T3 levels on a relatively moderate (split) dose regimen of levothyroxine. Pushing free T3 with bigger doses of levothyroxine is NOT the answer and can have long term issues eg for cardiac health as well as difficulties in adjusting dose in all circumstances (because of its long half life and it’s role from slow release stores) not to mention from the adverse side affects of too much levothyroxine day to day!

Sparklingsunshine profile image
Sparklingsunshine in reply toHashihouseman

GP's aren't able to prescribe T3 on the NHS unfortunately. It has to be initiated by an NHS Endo in the first instance. Many forum members wish it wasn't the case.

Hashihouseman profile image
Hashihouseman in reply toSparklingsunshine

they can and they do. mine did. despite the endo wanting me off it. give them the evidence it is needed and they will have no grounds to refuse and if they do you can appeal it on grounds of our right to patient centred care.

in reply toHashihouseman

I guess the thing that really throws me is my last test before starting meds showed

My t4 at 17 and t3 at 5.1 but prior to the.n my t4 was 16 and Tsh was anywhere from 7-4 but had no t3 readings cos it was on nhs.

But based on that reading alone it seems like my conversion is okay but on levo for some reason it’s not?

Hashihouseman profile image
Hashihouseman in reply to

then it may be too much levothyroxine in each dose ... ultimately negative feedback from t4 slows rate of conversion

in reply toHashihouseman

Sorry maybe I’m being dumb but what do you mean by: ultimately negative feedback from t4 slows rate of conversion

Do you mean if the t4 dose is too high it can lower t3 also?

Hashihouseman profile image
Hashihouseman in reply to

yup. rate of conversion is moderated by level of T4 among other things. so unphysiological excess t4 potentially reduces amount of free t3 in a way which doesn't match what we are trying to get from levothyroxine

in reply toHashihouseman

Also just to say that on 50mcg I seemed like I was very nearly there in terms of numbers so going to go back to that for now and give it more time.

My t4 was 17.6 and t3 4.7 after 4 weeks on 50mcg but gp did test early so not sure if that would have improved more if given a couple more weeks.

Hashihouseman profile image
Hashihouseman in reply to

that looks promising. it takes me +22 to get 4.6 Free T3. and that amount of t4 gives me palpitations and other difficulties. so i need t3 to have less t4. but your t4 may climb if you test after 12 wks on that dose

Marz profile image
Marz

If your vitamins and minerals are sub optimal then adding T3 may not be beneficial.

B12 good at 500 + - Folate and Ferritin good mid-range and VitD good at 100+

Once supplementing B12 test results will be skewed !

in reply toMarz

Tbh I will be surprised is I can get my ferritin higher as it has always been stubbornly low so not sure where that leaves me…

Marz profile image
Marz in reply to

Just assume the test result will be high in range once supplementing. This could result in your GP saying you do not need it ! The test identifies the amount in your blood stream - of which only around 20% reaches the cells, where it is needed.

in reply toMarz

Ah okay, thank you.

My vit d is where it needs to be at least and hopefully everything is getting there!

Marz profile image
Marz in reply to

How much VitD are you taking ?

in reply toMarz

It’s the better you mouth spray which I think is around 3000iui

Marz profile image
Marz in reply to

Your VitD result is quite high so you could reduce. Are you taking VitK2-MK7 along with magnesium ? Sorry have not had time to read all your posts....

in reply toMarz

No worries it’s all getting a bit complicated I feel! Yes I’m taking magnesium at bed time and the spray contain the vit k2. Yes I may try and find a lower dose vit d but like the spray just because it’s so easy!

Marz profile image
Marz in reply to

You could use the spray every other day !

SlowDragon profile image
SlowDragonAdministrator in reply to

What was your most recent vitamin D result?

If it’s the red spray with K2 - one spray = 1000iu

If it’s the green Better You - one spray = 3000iu

in reply toSlowDragon

The red spray with K.

VitD: 134 (50-250)

SlowDragon profile image
SlowDragonAdministrator in reply to

And how many sprays have you been using per day ….or per week?

in reply toSlowDragon

The full 3 sprays everyday.

SlowDragon profile image
SlowDragonAdministrator in reply to

So now drop to 2 sprays per day

Litatamon profile image
Litatamon

"limb weakness is so bad"

Can you tell me if this is with or without atrophy?

And is it strictly timing that you feel levothyroxine did this?

in reply toLitatamon

Without atrophy I think? But tbh I don’t know, I did see a doctor last month but she didn’t even examine me or notice my right arm randomly jerking out to the side for the whole appointment 🙄

Yeah so I notice my limbs tire super easily whilst taking any dose of levo and my muscles ache from use. Even from tiny things like doing the washing up or holding a drink. Everything feels much heavier than it used to and the aching can disturb my sleep.

I believe it’s the levo because i don’t recall it being an issue before and when I stopped levo for a week by the end of the week it had totally cleared up. But then without levo my digestion is so bad and slow I’m really uncomfortable and in pain.

I just feel like I have to choose between having severe constipation or constant limb weakness :/

Lalatoot profile image
Lalatoot in reply to

That is common when you stop levo. Symptoms resolve and you feel better. A few of us on here have done that. I felt fantastic for many months by reducing my levo to 25mcg daily. Unfortunately it doesn't last ...

in reply toLalatoot

I’m just not sure what that means for me though as 75mcg pushes me over the t4 range and give horrible side effects and 50mcg isn’t enough to do anything. Plus the whole time I’ve been on any dose of levo I feel like a zombie and so unlike myself. It’s just miserable and I feel so stuck

in reply toLalatoot

Also are you feeling better now? I can’t cope w feeling like this forever.

I’m genuinely wondering if I’m someone who needs t3 only due to my PCOS and t4 levels being ok prelevo

Lalatoot profile image
Lalatoot in reply to

3 years on and things are still improving!

in reply toLalatoot

That’s good to hear. Are you on levo only?

Lalatoot profile image
Lalatoot in reply to

No levo and lio. On levo only my TSH was low and under range while my ft4 was only at 60%. Tsh helps stimulate conversion so the low TSH was another factor resulting in poor conversion. My ft3 was 17%. With those results I was given an NHS prescription for lio. I only need 7.5 mcg daily to bring my ft3 up to 72%.

in reply toLitatamon

Not sure what that means if it’s without atrophy? Just feeling clueless and GP is no help. :(

Litatamon profile image
Litatamon in reply to

I was asking if with your leg weakness you felt like you had lost muscle at all (atrophy)?

Or was the leg weakness coming with no change in muscle mass? No atrophy would mean that there is something going on at the cellular level or there is a nerve issue affecting the ability of your legs. Something beyond atrophy.

I noticed that you had a drop in t3. Did that correspond with your leg weakness or no?

in reply toLitatamon

I think the drop in t3 does seems to correspond with my weakness and no I don’t think I do have any muscle loss.

My t3 seemed okay prelevo but I wonder if my t3 was bouncing up and down and causing issues then too?

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