Endo agreed to adjust T3 to even, regular dosing. - Thyroid UK

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Endo agreed to adjust T3 to even, regular dosing.

DandyButch profile image
18 Replies

Further to my previous post regarding the endocrinologist increasing my T3 from 10mcg x twice daily to 20mcg x1 daily, Mon, Wed, Fri only, and rest remaining at 10mcg.I thought this was odd, and posted on this forum. Some replied, saying this was not right.

I sent an email to my endocrinologist on 16th October, and she phoned yesterday to agree to change it to 20mcg am daily, and 10mcg pm daily. Regular dose.

She is still basing dosage on weight by calculating levothyroxine dose and then working out T3 equivalence. Is this the correct way to calculate T3 needs? Because, she is assuming I am almost optimally medicated, however, I still have loads of hypo symptoms, which she replied by saying that thyroid replacement hormones will not rid me of all symptoms. Is this true, or is it due to undermedication?

Any suggestions would be useful.

Thank you

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DandyButch
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18 Replies
Lalatoot profile image
Lalatoot

Dandy being on an optimal dosage may not clear all your symptoms. But you can hope for big improvements.3 years on from finding my optimal dosage things are still improving. It doesn't all just happen at once. Your original symptoms crept up on you over a number of years so likewise they improve. However some may never go.

Why?

Because the damage has been done. It's a bit like breaking your ankle - it can fully heal but the ankle can remain weak and cause pain when it's cold.

jimh111 profile image
jimh111

I would split the tablets so you take half in thd morning and half at night as T3 has a short half-life and I find the bedtime dose more effective at improving symptoms. I've found the brain needs T3 during sleep.

DandyButch profile image
DandyButch in reply tojimh111

Hi jimh111You may have misunderstood. Probably the way I put it. Sorry. I now take (from today) 20mcg in the morning and 10mcg in the evening every day.

Lalatoot profile image
Lalatoot in reply toDandyButch

I would find that too big an increase in one go. I'd increase by 5mcg daily for 2 weeks then add in the second 5 mcg.

DandyButch profile image
DandyButch in reply toLalatoot

Dear LalatootI have already been taking 20mcg three mornings a week since October. So it works out on average approx 5mcg increase daily anyway.

jimh111 profile image
jimh111 in reply toDandyButch

I'm suggesting you take 15 mcg morning and bedtime as I find the bedtime dose more useful than daytime. It seems the brain needs enough T3 to give proper restorative sleep which clears the mind for the next day. It's a reasonable assumption that you might need more during the day but my experience is that the brain's need is slightly greater during sleep, that brain fog and tiredness comes from non-restorative sleep.

DandyButch profile image
DandyButch in reply tojimh111

Difficult to do 15mcg as given 10 mcg capsules. But understand your suggestion. Thank you for your help.

jimh111 profile image
jimh111 in reply toDandyButch

I'd forgotten about capsules. I'd be tempted to take the larger dose at bedtime.I think the manufacturers have introduced capsules as people were splitting tablets and saving a fortune. Try to get your doctor to prescribe tablets as they can be split to give more stable doses.

Fusk1 profile image
Fusk1

Well somethings about how T3 works and be produced in our body will help. First our bodies produce about 30mcg of T3 daily ( some people produce more and some less depending on their size, metabolism etc). It seems that your endo provided all the dose you need in a day and this is weird if you take T4 as well expect you have a very high weight. T3 has the lowest point in the day at 3-5 pm and the highest at 4 am. The rest of the day the levels remain stable. So have in mind that we need stable levels of T3 during the day not high peaks and lows. The T3 we are supplemented works for 6 hours every time we take it and then is diminished. After 6 hours you have to be supplemented again. Usually endos calculated theT3 as a part of the T4 usually 1 part of T3 for 13-20 parts of T4. Then you can take this dose as it is in the morning and the double dose at 17.00-18.00 ( exactly the opposite you are doing...)or you can split it even more. I don't take it before bed because it keeps me awake but a low dose at 20.00 works fine for me. Have in mind that taking a high dose of T3 can make you feel weak as well....it is useful to check your pulse 1 hour after dosing if it gets higher than normal you are oversupplemented and you have to take a lower dose at a time

DandyButch profile image
DandyButch in reply toFusk1

Hi Fusk1I am not taking Levothyroxine any more, only liothyronine.

DippyDame profile image
DippyDame in reply toFusk1

We don't supplement T3, an exogenous supply replaces the T3....hence "replacement dose"

Most people respond to Lt4 replacement, and it would be wonderful if thyroid hormones worked for everyone according to a textbook explanation but we are all different which can make dosing a challenge for those who struggle to achieve their therapeutic dose

I need high dose T3 to function and take the whole dose at once, bedtime in my case but for some early morning works best. This, according to the late Dr John Lowe, a thyroid expert who followed this protocol himself for 25 years.

Serum T3 is inactive until it enters the nuclei of the cells, the T3 is then released in waves. It is to the level of T3 in the cells that we respond - this is where it becomes active and attaches to the T3 receptors enabling it to fullfill it's function. Ensuring T3 reaches those areas can be the challenge especially if it encounters a form of resistance.

DandyButch ...the bottom line for dosing depends on how we feel rather than on a list of numbers which are not mandatory guidelines. We are all different with different needs.

How long have you been on T3-only?

she replied by saying that thyroid replacement hormones will not rid me of all symptoms.

There is some truth in this because in some cases damage has been done by long term low cellular T3 which cannot be reversed with replacement hormone. I'm finding this to be a problem...I have achieved a dose which has resolved most symptoms but no matter how I titrate the dose I cannot shift the few remaining.

But, I'm aged 78, on high dose T3-only. and have possibly had slowly reducing cellular T3 for most of my life due to a form of thyroid hormone resistance....but I'm not typical!

However, in your case I'd suggest that is more likely an excuse to try to explain unresolved symptoms due to wrong medication!

Your GP seems to be taking a wrong, long winded approach to dosing! For a start T3 needs to be taken in a steady daily dose....not split over the week as levo can be used. The body needs a constant and adequate supply of T3.

The aim is to very slowly titrate the dose up until symptoms resolve....and for most they probably will, when the therapeutic dose is reached.

First you need to establish a steady daily dose....say 30mcg daily as has now happened. Since you are taking 10mcg capsules I'd be inclined to take 20mcg in the morning and 10mcg in the evening....both doses at least an hour away from food and drink.... T3 is less "fussy" than T4.

Maintain that steady dose for at least 6 weeks noting any signs and symptoms along the way. At the end of those 6 weeks your body will begin to tell you if it needs more or less hormone....by how you feel.

I'm afraid dosing is often trial and error and listening to your body....with a hefty dollop of patience!!

Hope the new protocol helps. Come back with any questions you have, we're all here to help.

DandyButch profile image
DandyButch in reply toDippyDame

Hi DippyDameYour response is music to my ears. Thankyou.

I tried levothyroxine for 18 months and saw my symptoms greatly increase, even more so each time I was given an increase, until I could take no more.

I have been on liothyronine only, since February this year starting with 5mcg twice daily. I am now with my second endocrinologist. I refused to see the first one again because he was dismissive, and requested a change.

My GP would only prescribe levothyroxine, full stop. He would only test TSH. He didn't understand that levothyroxine was not working for me.

I have definitely seen an improvement since February, although extremely gradual. I had a follow-up appointment in July and again in October each time with a dose increase, however the last increase was weird and irregular. After posting on here, I contacted the endocrinologist to query this. It has taken almost 2 months for her to reply.

Hence now the dose is consistent. I am concerned that she will only base the dosage on weight and TSH within normal range. Hence my future health could remain sub-optimal.

Thankyou again.

DippyDame profile image
DippyDame in reply toDandyButch

You're welcome!

Brightness14 profile image
Brightness14

Not true it's under or over medication. Usually Low FT3 in my case.

DandyButch profile image
DandyButch in reply toBrightness14

Hello Brightness14,Yes, I have palpitations due to hypothyroidism and undermedicatiin plus many, many more symptoms too.

helvella profile image
helvellaAdministrator

If you are taking T3, it is very likely because something doesn't work as it does in the textbooks. So calculating T4 to T3 equivalence can be somewhat futile!

I try (very hard) to explain in this blog:

helvella - How much more potent is T3?

A discussion about the relative potency of T4 and T3.

helvella.blogspot.com/p/hel...

DandyButch profile image
DandyButch in reply tohelvella

Thank you helvella. I have read this, and absorbed some of it, but brain fog etc makes it challenging, so I may have to re-read it. By the sounds of it, it is guesswork to calculate correct dose without symptoms etc???Am I getting the crux of the matter?

helvella profile image
helvellaAdministrator in reply toDandyButch

Pretty much!

You can try to look at formulas and numbers and comparisons across time. And they might give a general idea of direction and extremes. But don't kid yourself that you can just multiply a times b and get the answer to the universe. :-)

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