T4 T3 do you need both for improvements and rec... - Thyroid UK

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T4 T3 do you need both for improvements and recovery

Jump1 profile image
27 Replies

How long should you give levothroxine to work?

If after 12 weeks tsh and ft4 much improved. Is it likely to improve more on same dose or not?

Also I'm reading on a Facebook thyroid account that you need T3 as well as T4. So should you start self medicating T3 if you know go will never give it or isn't likely too.

Does it sometimes take T3 as well as T4 to remove all your symptoms. Can they all be improved with just T4 is this possible.

Discounting/excluding any other type of issues vitamins etc. If they are all perfect and thyroid the only issue.

I don't want to be wasting years on just T4 if what I need is T3 too. I've wasted 5 waiting on a trial of T4 from gp. During those 5 years waiting my life has been destroyed by the symptoms I want to be able to deal with things quickly and effectively If I need to, to bring relief instead of being blind for years or patient for years for gp to catch up.

And obv you would do nothing without blood tests to check levels etc. I'm just trying to undert what is possible or not or likely.

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jimh111 profile image
jimh111

It will really help if you could post any blood test results you have along with the reference intervals (numbers in brackets). Also, can you describe what symptoms you had when diagnosed and what they are like now.

Most symptoms will recover after 12 weeks but some can take longer. Depending on how long you were hypothyroid it can take time to get better. Some patients definitely need T3 but most do not. A problem with taking T3 is that it is very easy to take a dose that supresses your TSH and if this carries on for several months TSH can stay permanently low. This is a problem because TSH promotes T4 to T3 conversion, so it's better to not let TSH go low. However, some patients need doses of T3 that suppress TSH and it makes a big difference to their life.

In short, give us more information and try to avoid taking T3 for a little while longer.

Buddy195 profile image
Buddy195Administrator

I would try to focus on getting your key vitamins optimal Jump1, before considering sourcing T3. You may not actually need to add T3, so it’s definitely worth getting your Levo dose & vitamins optimal first.

I am now on a low dose of T3 in combination with Levo. However, I didn’t have a ‘eureka’ moment of feeling well when I added it. For me, going gluten free & getting ferritin, folate, Vit D and B12 high in the range was significant to regaining my health. I’m so grateful for advice on this forum to focus on this first, as it really helped me.

Very best wishes to you.

Jump1 profile image
Jump1 in reply toBuddy195

My folate bit d iron and b12 all high in range. I supplement them all. spent years sorting these out as gps would never consider thyroid medication. I still supplement with them all.

Buddy195 profile image
Buddy195Administrator in reply toJump1

That’s great; do you have any recent blood tests to share?

Jump1 profile image
Jump1 in reply toBuddy195

I'll have to hoke them out. But prob best to wait till I get them all retested again privately next month.

I've spent a fortune on vitamins and tests this past 5 years.

The last tests were May so prob best for new tests now since on thyroid.

But folate was above the range from memory above 20 active b12 was same like above 250 or something vitamin d same was like near a 100. Ferritin can't recall but was high would need to check. I intend doing them all again plus ft3 next month

SlowDragon profile image
SlowDragonAdministrator

Obviously you need full thyroid and vitamin testing done

Essential vitamin D, folate, ferritin and B12 are regularly retested at least annually

Frequently necessary to supplement to maintain optimal vitamin levels

Just testing TSH and Ft4 is inadequate

Presumably you have Hashimoto’s?

Have you had coeliac blood test done

Are you on strictly gluten free diet

How much levothyroxine are you currently taking

Typically 50mcg is standard starter dose and dose is increased slowly upwards in 25mcg steps over 6-12 months

It’s common to need to start slowly and increase slowly

Alternatively some GP’s will start patients on higher dose

guidelines on eventual dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

SlowDragon profile image
SlowDragonAdministrator

As Buddy195 says

First steps are to get vitamins tested and all four at optimal levels

trialing strictly gluten free diet (after testing for coeliac first), and getting dose levothyroxine slowly increased and fine tuned

Brand of levothyroxine is often important too, many people find different brands are not interchangeable

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts you have had hair loss

Hair loss often linked to low iron and ferritin

When were vitamin levels last tested

Are you vegetarian or vegan

What vitamin supplements are you currently taking

Jump1 profile image
Jump1 in reply toSlowDragon

All my vitamins are optimal. Supplement them all. I inject b12 take high dose folate tablets. Take iron tablets regularly. Take the spray d and k2 and magnesium. I've no doubt, vitamins are not the problem.

Neither vegetarian or vegan.

The hair loss by far for me is the most devastating symptom. It's what lead me on this path to begin with. It's hair loss and thinning from every body part. Thyroid eyebrows too

DippyDame profile image
DippyDame

Agree with SlowDragon....full thyroid test essential

Recently you wrote, So 9 weeks on levo 50mg. 1.79 tsh and the T4 is 18.2Range 12-22 for T4

Your TSH when medicated should be 1 or under...1.79 rather high.

Medics consider TSH to be the gold standard test....research proves this to be unreliable much beyond an initial diagnosis.

FT4 18.2 (12-22l

Your FT4 is 62% through the reference range which at first sight may seem reasonable ( it should be approaching 75% but we all differ slightly) but the result needs to be compared to FT3 for accurate evaluation

T3 is the active thyroid hormone required by every cell in the body in an adequate and constant supply.

If you are still taking 50mcg then you would most likely benefit from an increase to 75mcg levo

Until you have been further tested and increased your levo I see no reason to add T3. I speak as someone taking a high dose of T3-only who cannot tolerate T4 which was prescribed for 20 years until I could barely function. The advice and support I eventually received here helped me to do the "digging" which provided the solution...it took nearly 2 years to get close my therapeutic T3 dose.

There is no quick fix but with the correct protocol there is a fix. Not easy, but patience is important.

So...one step at a time. Full testing first, follow SlowDragons advice closely.

Best...

DD

Jump1 profile image
Jump1 in reply toDippyDame

Do you think it's likely to go down further tsh and increase ft4 on the 50 dosage? I have to get private tests done as gp receptionist said in range and nothing else. I'm only on a trial.of T4 go said if symptoms don't improve she will stop it. Nothing about increasing it.

I have to wait until next pay day to get private test. Should be week 16 by then. I can test everything.

But my vitamins are all optimal for sure.

I'm wondering if I will need to purchase more T4 to increase it myself.

DippyDame profile image
DippyDame in reply toJump1

Does this medic know nothing about titrating thyroid hormone doses!!

In med school these days they are very poorly trained in matters thyroid...that's why over 100,000 patients like us have found their way here in desperation...it is tantemount to medical neglect. Yet, extensive petitions to both Westminster and Holyrood have for the most part achieved nothing. Sorry, I'm on my soap box again!

She doesn't even appear to know that 50mcg is only a starting dose!

In your shoes I would ditch this woman and find another doctor if possible, at this rate she is only going to keep you unwell!

On 50mcg you may even feel worse as the body takes in the extra T4 and then ' Begs for more'!

By week 16 you should be well placed to "test everything"....the expense of an FTT far outweighs the misery of living with an undiagnosed/wrongly treated thyroid problem. Been there!

Since your nutrients are now optimised you may still have a problem converting T4 to T3...including an FT3 result will show this.

If conversion is OK then increasing levo will increase FT4, then by conversion of that T4 FT3 will rise and TSH should drop.

If conversion proves to be impaired ( high FT4 with low FT3) only then might you consider adding a little T3

TSH, a pituitary hormone, responds to the level of thyroid hormone in the blood -

High hormone = low TSH

Low hormone = high TSH

The lower the body's T3 level the more we suffer!

Post your results when you get them and members will advise.

Stay positive....it's still very early days!

Jump1 profile image
Jump1 in reply toDippyDame

To be fair this Dr is the first to listen. I've changed drs three times and seen two endos all to no avail until her

DippyDame profile image
DippyDame in reply toJump1

Good grief!

I rest my case.....they are failing patients big time!

Hope she does more than just listen.

Maybe FTT results will help her understand

Good luck

silverfox7 profile image
silverfox7

Have you an actual Vit D result? Sorry if I’ve missed it but low D can be an issue.

Jump1 profile image
Jump1 in reply tosilverfox7

Yeah it's near 100 from memory

silverfox7 profile image
silverfox7 in reply toJump1

Think it could help if a little higher. Seem to remember 120 fairly recently but didn’t take much notice at the time.

Jump1 profile image
Jump1 in reply tosilverfox7

Still taking d so should be higher now

Jump1 profile image
Jump1

Yeah. I take my thyroid at 5.30am. then the rest later on in the day or evening

jimh111 profile image
jimh111

It would help to know your blood test results from when you were first diagnosed, before you took any thyroid hormone. Beware of wasting too much money on multiple blood tests and vitamins / supplements. It's very easy to think that more testing will produce better results. A quarter of the world's population are anaemic (not just suboptimal ferritin, fully anaemic) and they don't have hair loss problems. So, provided your ferritin is normal don't worry about it, from memory the avearage ferritin for women is around 40 (forgot units).

Jump1 profile image
Jump1 in reply tojimh111

The vitamin results are all from pre thyroid.

My thryoid before taking T4 was just over 5.45 and ft3 4.8 ft4 13.8.

After 9 weeks tsh went to 1.79 ft4 18.2.

I have been working on vitamins for a very long time before thyroid and nothing really improved at all especially not the hair. It's so fine now it actually breaks at the root

SlowDragon profile image
SlowDragonAdministrator in reply toJump1

So have you done coeliac blood test

are you on absolutely strictly gluten free

Obviously you are going to need further increase in Levothyroxine

Once we start on Levothyroxine virtually everyone, will need to increase dose up in 25mcg steps until on FULL replacement dose of 1.6mcg per kilo

Always test as early as possible in morning before eating or drinking anything apart from water and last dose Levothyroxine 24 hours before test

Jump1 profile image
Jump1 in reply toSlowDragon

I don't and have never really ate any gluten type food. Including all this type stuff:

bread

pasta

cereals

biscuits or crackers

cakes and pastries

pies

gravies and sauces

I think the last time I ate bread must been about 10 years ago. Just not a sandwich toast type person....nor pies, pizzas pastas etc

I'm more a everytype of spud type eater.

SlowDragon profile image
SlowDragonAdministrator in reply toJump1

Gluten is hidden in thousands of products ….always read all labels

Come back with new post once you get FULL thyroid and vitamin testing results

jimh111 profile image
jimh111 in reply toJump1

I don't think these numbers are so bad they would cause hair loss but perhaps you have deteriorated since these blood tests so better to wait and see the next set. Hair loss and thyroid is rather strange as I know of people who have been fully replaced, feel well but hair loss continued.

Jump1 profile image
Jump1 in reply tojimh111

It would make you cry the whole thing.

I can only tell you about my own experiences. I was on levothyroxine for many years without much improvement. I tried three different brands but did notice any difference.Then, I read here about the importance of optimal vitamin and mineral levels. No doctor had ever mentioned that to me. So, I had private labs which showed several severe deficiences: vitamins D, B5, B6, B12 and A, iron, magnesium, zinc, selenium...I have worked hard on correcting them and they ended up optimal (according to the recommendations on this forum).

Once I had corrected those deficiencies, levo started to work much better. My FT4 levels are at the top of range and FT3 levels 70% through range. My TSH is slightly suppressed at 0.09 and I feel great, no symptoms of being either over- or undermedicated. I was diagnosed with Hashimoto´s in 1999.

Although many people need additional T3, I have read that some find it difficult to dose as it´s very potent and fast-acting compared to T4. It also seems excessive T3 can cause or worsen insulin resistance and blood glucose imbalances (said to be common in hypo patients). So it´s not a panacea.

To sum up, for me it was enough to correct vitamin and mineral deficiencies. It may not be for everyone, but I would recommend trying that approach before adding T3. Plus, it´s difficult to find doctors willing to prescribe T3 and to accept the very low/suppressed TSH that often comes with it. So, if T4 drugs work for you, they are much easier to take for several reasons. I like the fact that levo is slow-acting and I don´t really feel it kick in, I just have normal energy levels throughout the day.

NDT which is very popular is very expensive, and that includes products available OTC (such as Thyroid-S).

Also, make sure you are not undermedicated. Many doctors seem to think you should not take more than 75 or maybe 100 mcg a day, but many people need 150-200 mcg daily or even more. It would seem some people who remain symptomatic on levo are simply not on enough. Doctors tend to dose by the TSH which can be in range although your free Ts are suboptimal, so it´s important to test both FT4 and FT3 and dose according to them, NOT the TSH.

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