GP - no training in Liothyronine: Great that my... - Thyroid UK

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GP - no training in Liothyronine

Lost_Girl profile image
15 Replies

Great that my practice is offering Saturday appointments and I’ve Just been to see one of the GPs to discuss my next steps following latest blood test on 75mcg Levo and 10mcg Liothyronine taken as 5mcg at 7am, then again around 4pm: results below show Dec 2018 when on 100mcg Levothyroxine only - felt irritable/poor sleep/ached/lethargy.

Dec Feb Range

TSH 0.04 < 0.01. 0.3-5.1

T4. 23 18 11-22

T3 5 5.85. 3.1-6.8

I had seen an improvement in symptoms, sleeping better, clearer thinking, less irritable, but for last few weeks feeling exhausted again in the afternoon. In a letter to my GP, the endo suggested after 8 weeks I drop the Levothyroxine to 50mcg/75mcg alternate days and increase Liothyronine to 15mcg. However, following my last post and the wonderful replies I got, I wondered if just increasing my Levothyroxine to 75mcg/100mcg alternate days and staying put on the 2x5mcg Liothyronine, might help me back to that feeling of having turned a corner I felt around 4 weeks into my addition of Liothyronine and probably my storage levels of T4 decreasing perhaps. So needing a script for Levothyroxine, I mentioned this to GP. She virtually was horrified. She said she had no training in the use of Liothyronine and I needed to speak to the endocrinologist as she could only carry out his recommendations! End of! aghhhh!

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Lost_Girl
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15 Replies
MissGrace profile image
MissGrace

What a waste of time! The only saving grace is, at least your GP admitted they knew **** all about T3 - and probably T4 too if most GPs are anything to go by. There are plenty on here who have GPs who also know **** all about treating the thyroid - but they have a go anyway and screw up people’s lives. 🤸🏿‍♀️🥛

Lost_Girl profile image
Lost_Girl in reply to MissGrace

I know. Have had a huge sob!

greygoose profile image
greygoose

following my last post and the wonderful replies I got, I wondered if just increasing my Levothyroxine to 75mcg/100mcg alternate days and staying put on the 2x5mcg Liothyronine, might help me back to that feeling of having turned a corner I felt around 4 weeks into my addition of Liothyronine and probably my storage levels of T4 decreasing perhaps.

The answer to that is: probably not. If you can't convert T4 to T3, which is why you were put on T3 in the first place, what is the point of increasing T4 levels? It's nothing to do with decreasing T4 levels, it's to do with not being able to convert it.

If you felt good when you first added T3, and then the symptoms came back again, it means that you need an increase in T3, not an increase in T4. So if the endo suggested increasing the T3, why don't you do that? It's low T3 that causes symptoms. :)

Lost_Girl profile image
Lost_Girl in reply to greygoose

Thank you for replying - truly appreciated. When I was on mono therapy and my T4 was dropped I experienced what I felt was dementia like symptoms- I suppose I am wary of going back there! I am fearful having depended on the medical profession to guide me and getting nowhere, and now find myself having to lead and not understanding many things if that makes any sense. I know I have to drive this but scared to feel worse and hold my job.

My T3 is currently 75% through ‘the range’ and I was worried about going over it - even though I know this might not be my range!

I hope that explains how I got to my simple conclusions.

Thank you so much for all your input. I hope you and the other respondents realise how big a part you play in some of us finding our way. 😊

greygoose profile image
greygoose in reply to Lost_Girl

Going over the top of the range is nothing to be scared of. You'll soon know if it's too much for you, and take it down again. You're not going to drop dead the instant it goes over-range. :) But, at 75% in the range, I doubt an increase of 5 mcg T3 would take it over.

If you get to the top of the FT3 range, and still feel hypo, then you can experiment with raising levo slightly. It's all trial and error, there's no way you or anyone else can know what dose you need to be on until you reach it - even though some doctors pretend they can. You just have to keep trying things until you get the right dose. Besides, some people actually need their FT3 over the top of the range, because the range is not right for them. :)

Lost_Girl profile image
Lost_Girl in reply to greygoose

Thank you for reassurance 😊 enjoy your Sunday

greygoose profile image
greygoose in reply to Lost_Girl

Thank you. :) You, too.

Aurealis profile image
Aurealis

At the risk of totally confusing you with different advice to the above - have you tried redistributing the dose rather than changing it ? You may not need a change in dose, possibly just a change in timing. When do you take Levo? If in the morning, try at night. You may also get more effect from 10mcg T3 all in one dose. ... or you may need more T3 as others have said. But I would always try rearranging before changing dose - if nothing else it helps you to learn how your body responds and so in future it becomes easier to read the signs. Good luck x

Lost_Girl profile image
Lost_Girl in reply to Aurealis

Thank you so much. That makes sense. I take Levo in the morning with Liothyronine (when I wake), then Liothyronine around 4pm.

We eat late at night - usually around 7pm, so tummy not that empty! 😊

Hashihouseman profile image
Hashihouseman

Your T3 result wasn't low, T3 supplement may be too high, is there evidence you don't convert T4 as some replies suggest? Too much T4 either in any single dose or cumulatively can reduce T3 from intra-cellular conversion by DI02 inhibition. suppressing TSH is not necessarily a good signal and not necessarily caused by taking 'any' exogenous T3; excess T4 is a more significant driver of falling TSH in most circumstances. Perhaps splitting T4 into 2~3 even doses every day and reducing T3 particularly late afternoon would produce interesting and beneficial response?

Lost_Girl profile image
Lost_Girl in reply to Hashihouseman

Hi - thank you for your comments. I think my T3 is now at a decent level (75% through range) and did wonder if increasing it more would take me over range and I was a bit wary of side of effects even though they may be short lived.

My starting dose was 150mcg of T4 (mono therapy) in 2002, but has always fluctuated between 75mcg and 100mcg - when on 75mcg only my T3 blood test has been around 41% of its range and I feel awful - feel like I have dementia. When on 100mcg only, my T4 reading goes over range, T3, 51% through range and I feel irritable, get hugely overwhelmed by the simplest of things, exhausted, huge sleep issues.

This is the best I have felt in a long time - although struggling with energy in the afternoon.

Since being diagnosed my TSH has often been more suppressed than in the range. I understand that this is nothing to be concerned about if T4 and T3 are ‘normal’. I have logged all my results in a table from 2002.

The last 5 years I have gained weight - just knocks my confidence even more.

Re splitting T4 throughout the day into 2-3 even doses

- in my very simple mind I thought as a storage hormone this wouldn’t make a great deal of difference and hugely difficult to break up a tiny tablet?

Reducing T3 late afternoon

- are you suggesting I take less of the 5mcg dose? I currently have 5mcg tablets which again would be tricky to split?

I appreciate that it’s all experimenting to get it right especially as I have a very public job and need to ‘be on form’. I was such a high energy person and I have struggled to come to terms with this.

Thank you for taking the time to give feedback.

BB001 profile image
BB001 in reply to Lost_Girl

Splitting tablets. You can buy a tablet splitter from the chemist. I just used a knife and took one half in the morning and the other at night. That way you're still getting the same dose in a day.

Hashihouseman profile image
Hashihouseman in reply to Lost_Girl

Very interesting relationships between your dose range and free hormone levels and symptoms! I recognise some of that in mine, especially the irritability and dementia and fatigue occurrences. Getting it right is small difference in dose and blood levels but big difference in symptoms.....

As for t4 being a storage thing, it isn’t really, the proteins that it is bound to in blood plasma are the storage mechanism with the release as free hormone being part of the overall dynamics of the thyroid system. The balance between normal thyroid secretion and bound vs free and rate of plasma and cell membrane transport may be significantly disturbed by higher levels of free T4 from digestion and absorption of levothyroxine than would be otherwise experienced from normal thyroidal secretion. So if single doses of levothyroxine or the cumulative dose exceeds the optimal free t4 level even transiently then DI02 enzyme conversion of T4 to T3 can be inhibited despite an overall thyroid status that would suggest otherwise...... this may explain why we experience a weird disconnect between T4 and T3 at higher free t4 levels, and this seems to only occur during levothyroxine monotherapy!

frontiersin.org/articles/10...

I definitely feel this disconnect at cumulatively high levels of levothyroxine and if single doses are too high. So I never take more than 50mcg in one hit and prefer 3-4 25mcg doses plus 5mcg of T3 also split into 3! So I get 25mcg levothyroxine pills and 5mcg liothyronine pills no problem. Both those pills can be split easily enough. Yes I even half the 25 mcg levothyroxine pills to even the doses out if I feel it’s of benefit.

Sadly it’s too often said even by doctors that levothyroxine is practically inert until it’s converted to T3 but it’s significantly metabolically active in its own right and with TSH and DI02 part of the most important feedback loops for thyroid homeostasis and alignment.

Whether we are better with more or less T3 is part of our unique circumstances I started on 10 and then 7.5 now 5 but any less causes more problems so that’s that! I figure if we get the best we can out of levothyroxine and still feel fatigue or the horrid head effects we top up with T3 in the same way a healthy thyroid gland would and that is between 5-10 mcg T3, other things being normal! For me I realised some of my headache and irrational irritability was caused by too much T3 especially when I suddenly got more from t4 by splitting the levothyroxine dose.

Anyway, as you rightly say, it’s all a big fat experiment:)

Lost_Girl profile image
Lost_Girl in reply to Hashihouseman

Thank you once again. Truly appreciate your advice. Enjoy what is left of the weekend 😊

BB001 profile image
BB001

Ask your endo to write to your GP asking him to prescribe T3

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