tired : I’ve been trying to get my t3 levels up... - Thyroid UK

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tired

Mag999 profile image
18 Replies

I’ve been trying to get my t3 levels up getting a private prescription from a gp. Im now on 15 mcg split into 3 doses plus 50 mcg levothyroxine. I still feel awful and worry that as I was only sub clinical I’ve maybe overdone it I did have clinical symptoms of fatigue, weight gain, low mood raynauds, dry skin amongst other things but I am post menopausal and I also struggle to maintain decent levels of vitamins d b12

Part of the issue is I’ve had to take it on by myself, getting private blood tests, finding a private gp and it all adds up I only get my levothyroxine from nhs no consultant involved just gp who is happy to let me try. ( tsh around 4, t4 12 and t3 3.2 all in the normal range but borderline abnormal)

I just wonder if anyone has got fed up with trying and stopped it all I find constantly having to remember to take tablets a pain I forget to take them out with me and get behind

Maybe if I could see some results I’d feel more motivated

Im due another round of tests to see if the 3rd 5 mcg dose has shifted my t3 which has remained stubbornly at 3.2-3.9 so will see what happens then but it doesn’t feel any better

Sorry for long moan but happy to listen to other people in same or similar boat

Just to add my vitamins are all optimal at the moment apart from folate which is around 40 I keep trying

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Mag999
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18 Replies
RedApple profile image
RedAppleAdministrator

'I am post menopausal'

Tiredness, low mood etc. can be due to lack of oestrogen. You don't mention being on HRT, so I assume you're not. Might be worth exploring that avenue. We need all hormones to be in balance to feel well.

SlowDragon profile image
SlowDragonAdministrator

Im now on 15 mcg split into 3 doses plus 50 mcg levothyroxine.

That’s a very low dose levothyroxine

You might benefit from increasing levothyroxine

Many people find they need both Ft4 and Ft3 at least 50% through range

Recommended that 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)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

is this how you do your test

Mag999 profile image
Mag999 in reply to SlowDragon

Yes, I do follow that pre test advice, the reason they lowered the levo was because she wanted my results for t4 at around 15 (12-22 range) which seems low but I’m going to see shortly how that change has affected the levels and you may well be right I need to raise it back to 75.

greygoose profile image
greygoose

Just to add my vitamins are all optimal at the moment apart from folate which is around 40 I keep trying

What's wrong with that? What do you think an optimal folate level is? We always say it should be in double figures and/or over half-way through the range - if it has a range.

Presumably you're supplementing folate to have it that high? If so, there's no problem. Folate is water-soluble and excess is excreted. So, I wouldn't worry about that. :)

Trying to take your T3 three times a day could be part of the problem. Taking it so frequently makes it more likely that you will forget it - unless you set an alarm on your phone - and also makes it more difficult to take away from food/supplements/medication. Have you tried taking it just twice a day? Or even all in one go? Could be that you are one of these people - like me - who needs to take it all in one go to flood the receptors. Maybe worth a try?

Girtonian profile image
Girtonian in reply to greygoose

Interesting, I hope it’s ok to chip in? Where can I find information on taking T3 all in one dose? I remember seeing somewhere about a doctor who took his entire dose during the night? I’m curious as I currently take mine (10 mcg daily) in 2 doses but I find I’m ok for a couple of hours, then plummet into fatigue and brain fog again. Seems especially bad at the moment. I’ve had a couple of bereavements recently and been emotionally drained, so thinking that might have had an effect on my energy levels/cognitive function. The hormone thing is interesting too. I’m 66 and have had breast cancer in the past so advised not to take HRT, apart from 2 x weekly vaginal oestrogen pessaries. I currently take 75 mcg Levothyroxine daily. Consultant mentioned the possibility of trying increasing T3 to 15 mcg in 3 doses and reducing Levothyroxine to 50 mcg - but I agree managing the 3 doses of T3 would be more difficult (I already use my phone alarm for 2). And reducing the Levothyroxine to 50 mcg seems very low. My last set of results were nicely in range, but I wonder if they maybe need to be more optimal. Any thoughts welcome.

greygoose profile image
greygoose in reply to Girtonian

Well, I think we would have to see your results to have any thoughts - results and ranges.

It's a weird think about endo that they always want to reduce the levo when adding T3/more T3. I have no idea why they do it, and I don't think they do, either! But, I've never had the occasion to ask one. I was say: increase the T3, retest after six weeks, and only then see if the levo needs reducing.

I don't know anything about HRT, I've never had it. But, I wonder why estrogen only, because it's progesterone that protects from breast cancer. Estrogen dominance can cause it.

The doctor that took all of his high dose of T3 in one go was Dr John Lowe - now sadly deceased. But you could try googling him. Taking it all in one go is often necessary for people with some degree of thyroid hormone resistance - such as myself and DippyDame . We need to flood the receptors in order to get at least some of our high dose of T3 into the cells. The average endo/doctor does not understand this.

However, I'm not convinced that becoming fatigued and brain-fogged two hours after taking T3 has anything to do with the T3 itself. T3 has a half-life of about 24 hours in the blood, and what gets into the cells stays there for about three days. So, you cannot 'use it up' in two hours, as some people think. In any case, that T3 you just took will not go directly into the cells, it will ride around in the blood for a while before latching on to a receptor. And it doesn't do anything in the blood.

Still trying taking it all in one go is a good thing to try, because you just never know what will help and what won't. We need to be open to all possible solutions. :)

Mag999 profile image
Mag999 in reply to greygoose

I will try that, would make life simpler! Between me and the dog I have alarms for meds going off all day 🤣

I thought folate had to be around 70? That’s what I’m aiming for by supplementing.

greygoose profile image
greygoose in reply to Mag999

I have never seen anywhere where it says that folate should be any particular number, just nice and high. Yours is fine, don't worry about it.

I still feel awful and worry that as I was only sub clinical I’ve maybe overdone it

I mean to say before, don't be taken in by this sub-clinical malarky, it doesn't mean anything. It's just a medical ruse to avoid diagnosing people and treating them. Being hypo is like being pregnant: either you are or you aren't. You can't be sub-clincially pregnant. And if your TSH is over 3, you are hypo.

And it doesn't matter what your levels are, you need what you need. And having what they call a 'subclinical' TSH doesn't mean you are more likely to go over-medicated than anyone else. Medics make the mistake of thinking that levo 'tops up' the hormones your thyroid is making. It doesn't. It shuts the thyroid down - by reducing TSH - and you become entirely dependant on the exogenous hormone you're taking (levo - T4). So highly unlikely you're taking too much levo on a dose of only 50 mcg.

T3, of course, is another matter. 15 mcg is a decent dose, and adequate for most hypos. But you don't seem to be absorbing it in the gut, to have such a low level. Do you always take it at least two hours after food, or one hour before? Just like levo? Do you have gut issues?

Mag999 profile image
Mag999 in reply to greygoose

Yes I have some gut issues as have Candida, pernicious anaemia and have to supplement vit d year round, am working with functional medicine practitioner who has been v helpful

I need to get on top of diet again as I am good for a few weeks then slide into too much carb. I do take it away from food always

I wondered about my t3 receptors as you said about flooding rather than little and often so will try one hit of 15 and see what happens. And take your point about levothyroxine will see where I’m at next test and expect to go back up to 75.

Thanks for the info re sub clinical, that helps.

greygoose profile image
greygoose in reply to Mag999

You're welcome. :)

Mag999 profile image
Mag999 in reply to Girtonian

You are in exactly same position as me with same advice from doc. I think lowering the levothyroxine has made me more tired so will see what next results say. Can I ask what your results were on 15 mcg t3 and 75 mcg levothyroxine?

SlowDragon profile image
SlowDragonAdministrator

looking at previous post

healthunlocked.com/thyroidu...

11 months ago before T3 was added

Levothyroxine was reduced from 100mcg to 50mcg

That was far too big a reduction

25mcg reduction would have probably been better

Increase Levo slowly back up

Retest after 8 weeks on 75mcg

Mag999 profile image
Mag999 in reply to SlowDragon

No i did have a spell on 75 mcg but doc was concerned about over medicating as I felt a bit tired but wired on 10mcg t3 and 75 levo

I will get results shortly I just feel more tired and wired on this current dose.

SlowDragon profile image
SlowDragonAdministrator in reply to Mag999

Well you can fine tune

You might need 62.5mcg daily

50mcg plus 12.5mcg

Or a bit more or a bit less

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

Star13 profile image
Star13

Just want to say that you need to give any changes time. It’s taken me about a year to feel the benefits of my last change in dosage. I read on here all the time people saying they don’t feel any different after a few weeks but sometimes you need to be patient if your taking an optimum dose and just see how it goes.

DippyDame profile image
DippyDame

tsh around 4, t4 12 and t3 3.2 all in the normal range but borderline abnormal)

Dose 50mcg levo plus 15mcg T3 ( split x3)

It is not a "normal" range.....that suggests if the result falls within it then all is well....it is notstand this

Instead it is a reference range which is basically for guidance.....we aim to find the exact spot within the range where we feel well with no symptoms. Falling outside the ref range indicates further concern

A year ago on 75 mcg levo these were your results

FT4: 21.7 pmol/l (Range 12 - 22) 97.00%

FT3: 4.1 pmol/l (Range 3.1 - 6.8) 27.03%

FT3 was abysmally low and T4 to T3 conversion impaired.....so T3 was added

Strangely your FT4 was very high when on what is only a moderate dose of 75mcg .....in addition taking T3 lowers both FT4 and TSH so your actual FT4 was possibly slightly higher!

But, after different dose changes you now take 50mcg levo plus 15mcg T3 with labs FT4 12 and FT3 3.2 ( same ranges)

FT3 far too low for wellbeing

For good health every cell in the body must be flooded with T3 by way of and adequate and constant supply....not happening for you!

Were these dose changes done very slowly with gaps of 6/8 weeks between changes?

Rushing dose changes is a retrograde step!

In your shoes I would aim to take the 15mcg in a single dose. (Don't panic at that suggstion!! I need 100mcg T3 to function and take it in a single dose at bedtime......I have a form of thyroid hormone resistance.....we need what we need!)

It may very likely be that you need more T3.

I worry that as I was only sub clinical I’ve maybe overdone it

I've never understood the use of the term sub clinical....you are either hypo or you're not! And by all accounts you have a form of hypothyroidism!

Did you leave a gap of 24hrs between last T4 dose and the test....and 12 hrs gap for T3?

Suggest you try a single dose of T3, monitor your symptoms, test again in 6 weeks then review/00revise you dose.....and listen to your body.

Mag999 profile image
Mag999 in reply to DippyDame

Thanks very much for helpful summary! I will definitely do the single dose and retest in 6 weeks

I have gone glacially slowly with changes I promise! This has been over past 21 months but t3 only added last spring and spent a long time getting to 15 mcg.

I will have look into thyroid resistance if my t3 refuses to increase maybe? I was on 100mcg I think when t 4 was at 21.7, it was best at 75 on terms of how I felt so might just need to titrate it back up.

shaws profile image
shawsAdministrator

I take once daily dose of T3 when I awake with one glass of water. I feel well and have no clinical symptoms I wait an hour before I eat.

I follow the advice of Dr John Lowe *now deceased" but details are still on the internet. He was an expert re T3 (liothyronine). He was also a scientist. Unfortunately he had a bad fall that caused his brain to bleed and he died.

drlowe.com/thyroidscience/c...

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