Should I switch to T3 only: I am currently taking... - Thyroid UK

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Should I switch to T3 only

HarrietJW profile image
24 Replies

I am currently taking 125mcg Levothyroxine and 100 Liothyronine (LA Pharma)

My results are:

TSH - 0.006 (0.27-4.2)

T3 - 6.7 (3.1-6.8)

T4 - 14.2 (12-22)

Vit D - 107 (50-175)

Ferritin - 47 (13-150)

Thyroid Peroxidase Antibodies - 250 (<34)

Thyroglobulin Antibodies 85 (-115)

Ever since I started treatment in January 2019 I have not seen symptoms improve, they are not debilitating but also not ideal - sensitive to the cold, Reynaud like hands, weight gain (my weight has increased since starting treatment and I eat less and move more), anxiety.

A private GP has suggested I switch to 3 grains of NDT, but the prescription he has send will cost over £120 a month.

When I was originally diagnosed my T4 was higher than it is now (16.0)

and I have never seen it rise, regardless of my dose, I have a feeling that T4 is not doing anything for me.

Do you think it would be worth me trying T3 only to see if my symptoms improve?

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HarrietJW
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24 Replies
greygoose profile image
greygoose

How long have you been on your present dose? How do you take your thyroid hormone? Because you don't seem to be absorbing all that much.

If you need 100 mcg T3, 3 grains of NDT wouldn't do you much good! I would stop paying that private GP, if I were you, he doesn't know much about thyroid.

HarrietJW profile image
HarrietJW in reply to greygoose

Thanks for your help. I have been on my current dose about 8 weeks. Do you think I would benefit from trialling T3 only ?

greygoose profile image
greygoose in reply to HarrietJW

I think you should give it longer to see if this dose suits you first. 8 weeks is not very long in the greater scheme of things - not where thyroid is concerned, anyway.

But, do you take both your levo and t3 on an empty stomach and leave at least an hour before eating, etc. And, well away from other supplements and/or medication?

HarrietJW profile image
HarrietJW in reply to greygoose

Hello, yes I take them both on waking in the morning. I have tried various doses of T4 + T3 and nothing seems to change

greygoose profile image
greygoose in reply to HarrietJW

I've just read below that you leave 24 hours between your last dose of T3 and the blood draw. That's too long. It should be between 8 and 12 hours. So, your result there is a false 'low'. It's actually much higher than that and you are probably over-medicated, and that could be why you don't feel well.

How did you increase your T3? Was by 6.25 mcg every six weeks, leaving six weeks after every fourth increase and retesting? If not, if it was faster than that, then you've probably missed your sweet spot.

HarrietJW profile image
HarrietJW in reply to greygoose

Thank you, I did not know that, I thought it was ok to just miss the dose and test.

I have had a look at my past results which show the following over the past 1.5 years:

No Thyroid Medication

TSH - 16.50 (0.27-4.2)

T4 - 11.6 (12-22)

T3 - 4.5 (3.1-6.8_

50g Levothyroxine

T4 - 13 (12-22)

TSH - 2.7 (0.27-4.2)

1.5 NDT

TSH - 0.6 (0.27-4.2)

T3 - 5.57 (3.1 - 6.8)

T4 - 14 (12-22)

100 Levothyroxine + 20mcg T3

TSH - 0.07 (0.27-4.2)

T3 - 6.12 (3.1 - 6.8)

T4 - 19.9 (12-22)

Unfortunately I can no longer get hold of the T3 that was prescribed with the above results. But regardless, it seems the more T4 I take the more I have symptoms.

Any further advice appreciated!

greygoose profile image
greygoose in reply to HarrietJW

When you were taking the NDT, if you left a gap of 24 hours between the last dose and the blood draw, then that test too is worthless. With NDT, like T3, it should only be a gap of 8 to 12 hours.

24 hours is for levo. So, that FT4 result is correct. But, people taking T3 rarely need their FT4 quite so high. Perhaps that just needs reducing. And, taking levo will increase your FT3, too. Try reducing the levo first, 25 mcg at a time, and see what happens.

jimh111 profile image
jimh111

How long are you leaving between your last dose of L-T3 and having the blood taken? An fT3 of only 6.7 is highly suspicious if you are on 100 mcg L-T3. Do you split your daily L-T3 dose?

HarrietJW profile image
HarrietJW in reply to jimh111

24 hours. I had heard from the forums that the LA Pharma purchased from Thailand was very weak hence working up to 100mcg

jimh111 profile image
jimh111 in reply to HarrietJW

If it's not pharmaceutical grade I wouldn't use it, without full regulatory oversight it may have variable content. You should have the blood taken about half way between doses, 24 hours is too long, your fT3 result will be much lower than a 'true' figure depending on whether you split the doses.

HarrietJW profile image
HarrietJW in reply to jimh111

Thank you, I did not know this!

jimh111 profile image
jimh111 in reply to HarrietJW

If you take your L-T3 once a day just multiply your fT3 by 1.4 to get a VERY ROUGH estimate of a more realistic number. If you take it twice daily it will be a little higher.

I would try to get better L-T3 as my instinct says not to trust the one you have.

Although your first results indicate a failing thyroid gland the numbers weren't that bad, at least not the fT3. The symptoms you describe are mild and you say they have not got better. I would switch to the lowest dose that helps, if going from 20 mcg L-T3 to 100 mcg has little effect then go back to 20 mcg. The danger is that if your TSH is suppressed for a long time it will be unable to recover and this can present future problems like poor T4 to T3 conversion. It's a trade off, high doses of thyroid hormone carries risks (as does hypothyroidism) so we have to balance that against the improvement we get from the treatment.

SlowDragon profile image
SlowDragonAdministrator in reply to HarrietJW

If you are leaving 24 hours between last dose T3 and blood test you are getting FALSE result

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last 1/3 rd of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Essential that vitamin D, folate, ferritin and B12 are optimal too

Many people need optimal Ft4 and Ft3 levels

You may need 25mcg increase in levothyroxine

DippyDame profile image
DippyDame

Do you have a copy of your lab results for...

a) your (first) diagnostic thyroid function test

b) before you introduced T3?

What was your levo dose before adding T3?

125mcg levo plus 100mcg lio is a big dose.

Your ferritin is far too low.

Has your GP discussed Hashimoto's with you, your antibodies are raised

thyroidpharmacist.com/artic...

As someone who needs a huge dose of T3 because I have a form of Thyroid Hormone Resistance it took me many months to first titrate T4/T3, eventually to no effect and then to very gradually increase a T3-only dose until my symptoms were relieved. In total over 2 years!

I started to privately source T3 and to self medicate, with advice from here, and much reading combined with trial and error...most medics are clueless about thyroid disease beyond basic protocols. I became so unwell that it was my only option

It is a long slow process allowing 6 to 8 weeks before each increase of 5/6.25mcg ( i.e a quarter tablet of 20 or 25mcg strength)

T3-only has been described as the last resort.

You sense that you do not tolerateT4, perhaps you are right, but in your shoes I would not be starting T3 without first examining all my lab results for clues! You are entitled to ask your surgery for copies.

125mcg levo is not a huge levo dose, I was on 175mcg before I decided to trial T3.

I'm suggesting caution rather than opposing T3, only because it is a very powerful hormone and needs to be treated with respect. Neither is it a quick fix treatment.

I would be inclined to first raise the levo dose by perhaps 25mcg while dropping the T3 dose initially by a quarter tablet then test again after 6 weeks. I suggest your current dose is lowering your FT4 while increasing your FT3. TSH is not the tool to adjust dosing, as many medics wrongly think.

Personally I think your exogenous hormone levels are wrongly balanced.

I'm not a medic but I've had to read a lot in order to improve my health....other members will add their views

Good luck and stay safe

DD

HarrietJW profile image
HarrietJW in reply to DippyDame

Thank you, that's great advice. apologies, I meant 146 for Ferritin!

I have had a look at my past results which show the following over the past 1.5 years:

No Thyroid Medication

TSH - 16.50 (0.27-4.2)

T4 - 11.6 (12-22)

T3 - 4.5 (3.1-6.8_

50g Levothyroxine

T4 - 13 (12-22)

TSH - 2.7 (0.27-4.2)

1.5 NDT

TSH - 0.6 (0.27-4.2)

T3 - 5.57 (3.1 - 6.8)

T4 - 14 (12-22)

100 Levothyroxine + 20mcg T3

TSH - 0.07 (0.27-4.2)

T3 - 6.12 (3.1 - 6.8)

T4 - 19.9 (12-22)

Unfortunately I can no longer get hold of the T3 that was prescribed with the above results. But regardless, it seems the more T4 I take the more I have symptoms.

Any further advice appreciated!

DippyDame profile image
DippyDame in reply to HarrietJW

Thank you

That's a lot of med changes over a year and a half. I suspect your body is a little confused! It takes a long time for the body to adapt to a dose increase ...up to 8 weeks. It sounds as if your body has been riding a roller coaster.

No dates for results but...

Looking at your diagnostic results...

For good health your TSH should be close to 1, 16.5 far too high

FT4 at 11.6 (12 - 22) is -4% through the range. Very low!

Your FT3 at 4.5 is 37.84 through the range. Also very low.

Both FT3 and FT4 should be around 75% through the range.

Your diagnostic test screams hypothyroidism! Your GP was able to recognise this but unable to understand how to treat adequately. Did he fail to test (after 6 weeks) and increase your levo from 50mcg ( the starter dose) before playing fast and loose with other thyroid meds. It did slightly improve your diagnostic numbers....but not enough. Further increases were required rather than a shift to NDT.

On NDT your TSH understandably dropped while your T3 rose to 66% with your FT4 now at 20%, still far too low.

On 100mcg levo plus 20mcg T3 your FT4 was raised to 79% by the levo with FT3 rising to 83.78.

FT4 about right with FT3 slightly high but acceptable

How did you feel after a few weeks on that dose?

How long did you maintain this dose?

I would consider slightly increasing the levo dose (25mcg) while dropping the T3. by half a tablet. Meantime regularly testing TSH, FT4 and FT3 until your TSH drops and your FT3 and FT4 are around 75% through the range...you will not find much improvement for several weeks.

It may not be the levo that is the problem but the way it is being dosed and used.

Trial and error is the way forward how you feel is the important thing.

Your labs may show that you are not adequately converting the storage hormone T4 to the active hormone T3. This is indicated by high FT4 and low FT3. Many of us have a private genetic test which may reveal a polymorphism as the cause....this can be helpful to persuade medics prescribe T3. But not often!

Meantime you must ensure Vit D, vit B12, folate and ferritin are all optimal this is essential for adequate thyroud function

It's not clear when and on what basis your meds and doses were changed but I'm afraid you seem to have encountered one of the many medics clueless about thyroid disease.

Most of us here have had this experience!

However, you seem focused on your response to levothyroxine. You may very well be right and that is what I eventually discovered but I still feel that the journey you have been on has been far is too bumpy to immediately draw a firm conclusion.

As I said above I'd be inclined to slowly raise the levo while reducing the T3 while regularly testing.

Sadly there is no quick fix when it comes to the thyroid...it takes time patience determination and often much reading.

Hopefully things will improve soon

HarrietJW profile image
HarrietJW in reply to DippyDame

Thanks so much for this thorough reply. Do you have any thoughts on Reverse T3? It is not something that gets mentioned much on this forum but where I have read elsewhere I felt it was something that I might have a problem with. Perhaps I am jumping to conclusions and I need more time on my current dose?

DippyDame profile image
DippyDame in reply to HarrietJW

Sorry, I've never considered rT3 as significant so can't answer your question but you probably are jumping to conclusions! I'll tag greygoose who is a fund of knowledge about rT3 - and all things thyroid - she will put your mind to rest.

I think you are also jumping from dose to dose and med to med too quickly.....patience is the name of this challenge!

Thank you greygoose.

greygoose profile image
greygoose in reply to HarrietJW

At one point, rT3 was discussed a lot on here. Until we found out that it wasn't the missing-link that a lot of people thought it to be. It's actually a complete red herring. And, the only thing an rT3 test will tell you is if it's high or not, but won't tell you why.

And, there are many, many reasons why you could have excess rT3, and only one of them has anything to do with thyroid. And, with your latest FT4 result - T4 - 14.2 (12-22) - if you did have high rT3, it would be nothing to do with thyroid because your FT4 is not high enough.

rT3 does not cause hypo symptoms, it does not block T3 receptors, it only stays in the body for a couple of hours before it is converted to T2. So, I wouldn't bother with rT3 testing, if I were you. :)

DippyDame profile image
DippyDame in reply to HarrietJW

HarrietJW ....hope the response from greygoose has put your mind to rest re rT3.

One less thing to worry about!

Hope things improve soon

SlowDragon profile image
SlowDragonAdministrator in reply to HarrietJW

Would agree with DippyDame you have had enormous changes in doses far too quickly

Everything with thyroid needs careful tweaking

Increasing only by maximum of 25mcg levothyroxine or by 5mcg T3 at any onetime and waiting a minimum of 6-8 weeks before retesting

Always stick to same brand of levothyroxine

HarrietJW profile image
HarrietJW in reply to SlowDragon

Thank you. It’s very hard with the T3 to stick to the same brand, does this make a difference too?

SlowDragon profile image
SlowDragonAdministrator in reply to HarrietJW

Absolutely yes

Extremely important to stick on one brand

Lienka profile image
Lienka

Hi! I am dealing with similar issues.

healthunlocked.com/thyroidu...

My endo kept raising my T4 meds and dropping my T3 meds since September making me feel worse and worse. I've decided to drop my Levo and increase Lio gradually. Eventually not taking Levo at all. I still don't understand why we need to take T4 meds if we are supplied with enough of T3? Anyway, follow me and see how I feel within next weeks.

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