Recent results. Should I change dosage? Any ins... - Thyroid UK

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Recent results. Should I change dosage? Any insight appreciated!

Apollo_Creed profile image
23 Replies

Hi folks,

Recent results as follows:

TSH 0.01 (0.27 - 4.20) -6.62% through range

FT4 11.8 (12.0 - 22.0) -2% through range

FT3 4.9 (3.1 - 6.8) 48.65% through range

I'm currently on 125mcg levo and 10mcg x3 T3

I'm feeling much better. Not quite there yet. Sometimes energy and mood is a little low.

What would you suggest in terms of change in medication?

Thanks!

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Apollo_Creed profile image
Apollo_Creed
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23 Replies
radd profile image
radd

Apollo_Creed,

I would say you are on a fair dose of T3 (& T4) and would not be looking to raise further without first checking nutrients and iron levels are optimal.

These are all cofactors in the making of thyroid hormones work better and raising T3 too high may alter the balance of other hormones. If you post iron/nutrient results complete with ranges (numbers in brackets) members will comment.

Hashihouseman profile image
Hashihouseman

Hi Apollo I'd suggest less T3 more T4 and split T4 dose into 2 or 3 equal parts over 24hrs taken whenever suits you. Aim for a TSH of about 1.0 not 0.01 and T4 about 15-17 and T3 as it is!

NWA6 profile image
NWA6 in reply to Hashihouseman

I don’t think that’s possible Hashihouseman! When we supplement with T3 it’s common to have a suppressed TSH result. Mine is currently 0.03.

Hashihouseman profile image
Hashihouseman in reply to NWA6

It’s not only possible it’s probably desirable, unless there is a specific reason for suppressing TSH like thyroid or cancer risk. The human thyroid system is designed to run on T4 with a little bit of T3 most T3 production should come from intracellular conversion of t4, the only source of T4 in the body is the thyroid gland and if that doesn’t work we have to supplement it. In my experience and from reading tons of the research and textbook literature and anecdotal Case histories most people would probably do better to mimic natural thyroid secretion and that means no more than 10 to 20% of T3 should be coming from supplemental T3. Too much free T3 will suppressed TSH to an excessive degree and that will interfere with The complexities of thyroid hormone homoeostasis and how our cells are evolved to make use of T4! Yes if we have some genetic disability in T4 conversion, such as D I O 2 polymorphism then we may need to supplement a little extra T3, but even so in my experience there is more to be gained by splitting levothyroxine dose to more physiological levels to prevent inhibition of T4 to T3 conversion.

NWA6 profile image
NWA6 in reply to Hashihouseman

😬 I still think you’re wrong and you’ve got a case of choosing textbooks over people. I truly believe that once we start supplementing with T4/3 you can forget about the TSH test, it means nothing.

Hashihouseman profile image
Hashihouseman in reply to NWA6

Not at all, science is all about people and its people that feed research. If you discount learning and knowledge as mere 'text book' you are writing off the value of research and learning for advances in everything!

Here's some text book stuff ... half life is a concept more suitable to Radiation emission than T4, T4 in the body does not decay like a radioactive element it is in a dynamic equibilibiium between its metabolic clearance rate and its production rate with bound and free proportions all controlled by complex feedback loops varying according to physiological need and status. The so-called half-life is roughly the metabolic clearance rate of T4 taking into account all the above and its volume distribution in the body. You could also think of it in relation to how long it takes overall system to rebalance after changes in T4 production, which for hypothyroid patients is often almost entirely and only the relatively large (unphysiological ) doses of exogenous T4 (Levothyroxine). Research indicates that rising T4 levels inhibit the rate of T4 to T3 conversion and that normal T4 secretion is pulsitile but steady over 24hrs not a sudden massive influx via the gut as in hypothyroid hormone replacement regimes! Research also indicates that TSH stabilizes between 2 - 6 weeks after significant changes to T4 replacement. If T4 replacement doses, for the sake of convenience, tradition or doctrine is large enough to temporarily cause excess free T4 (which is what Levothyroxine is ) intra-cellular conversion by DI02 enzyme will potentially be reduced - by the level of T4 rather than by subtle and natural variations according to the normal healthy feedback controls such as TSH (another reason for NOT suppressing TSH ) . And why knowing TSH along with ft3 and ft4 are so valuable for thyroid function testing particularly under thyroid replacament regimes.

It would be interesting to know what evidence you base your 'belief' that TSH means nothing under thyroid hormone replacement regimes ?

NWA6 profile image
NWA6 in reply to Hashihouseman

HinHashihouseman. I base my ‘belief’ that TSH testing is no bases for health because of over 10yrs of being unwell only 3/4 times has my TSH been out of range (higher) within that time my TSH has been in range, and I was very unwell. My FT4 and FT3 have always been in range too. It is only now that I’m on T4 and T3 that I am well and my TSH is suppressed. I’m not interested in my TSH score. Only my symptoms and FT4/3 results.

Being ‘in range’ means nothing to Jo public. Trying to adhere to what you’ve just written is only holding Dr’s back from actually prescribing what is needed.

I actually don’t need to understand the intricate workings of the Thyriod function, T4/T3, I know enough as a lay person to say that what Dr’s told me to do based on the ‘science’ was rubbish and kept me sick.

I don’t fully understand why I’m really cross at your response, maybe years of being told I’m well, not being listened too, being asked ‘where’s your evidence’ it just smacks of arrogance at the lay person who doesn’t fully understand the science to keep them in their place. So my ‘evidence’ is that i now smile everyday, over 20 plus symptoms gone, all with a suppressed TSH. I am the living, breathing, walking evidence. I personally don’t need any more back up than that.

Just out interest though how do you think that a suppressed TSH will affect me? I don’t get it? TSH around 1 = unwell, suppressed TSH = well.

I think everyone can understand that rather than lab tests.

in reply to Hashihouseman

I totally agree

SilverAvocado profile image
SilverAvocado in reply to Hashihouseman

We've recently been very lucky to have a Canadian thyroid advocacy group writing an amazingly well researched and prolific blog.

The recently did a brilliant series querying the belief that in healthy people only 20% of T3 is made in the thyroid.

thyroidpatients.ca/2019/06/...

NWA6 profile image
NWA6 in reply to SilverAvocado

Perfect 👌

My favourite paragraph (because I’m a basic human who’s grasp of science and studies is limited)

‘By trying to nail down our thyroid hormone ratios and rates to something static, even by trying to target an average found in a segment of a healthy population, medicine can keep some thyroid patients trapped in a state of disease.’

– Tania S. Smith, with input from Linda Sanday

Angel_of_the_North profile image
Angel_of_the_North in reply to Hashihouseman

It might be theoretically desirable , but what if it is impossible without reducing thyroid hormones to a level where it is impossible to function? Not everyone's pituitary has read the textbooks!

Hashihouseman profile image
Hashihouseman in reply to Angel_of_the_North

who said anything about reducing thyroid hormone to that level! I'm saying sometimes less is more! And I agree with the comment above about nailing down thyroid hormone levels to something static - they are and should be in a state of flux but in dynamic equilibrium and that is what conventional thyroid replacement monotherapy tramples on.

Angel_of_the_North profile image
Angel_of_the_North in reply to Hashihouseman

What I meant was: what if raising TSH to around 1 results in thyroid hormone levels that are too low for the person to function?

Hashihouseman profile image
Hashihouseman in reply to Angel_of_the_North

but what if it functioned better? The normal most common healthy TSH is nearer 1 than anything else and if T4 alone doesnt cut it then small amount of T3 to supplement may deal with residual symptoms . However it may be that an individual has more complex pathology / phenotype and their so called set point doesnt fluctuate around 1 and as ever symptoms and sense of wellbeing are just as or more important than a modal value for any TFT.

Angel_of_the_North profile image
Angel_of_the_North in reply to Hashihouseman

Obviously if it worked you'd stick at that, but aiming for a TSH number instead of how you feel is just silly and if you've been raising levo slowly, you've probably already tried a lower dose

Hashihouseman profile image
Hashihouseman in reply to Angel_of_the_North

In my experience it does work and ive tried every variation of tsh and free thyroid hormone levels!

Excess t4 is quite likely the cause of many people’s persistent lack of wellbeing on ever rising or unphysiologically high but stable thyroxine replacement.

Even on this forum there are completely ntless people experieincing persistently poor wellbeing despite higher levothyroxine doses - so what shokd they do?

Silliness is ludicrous behaviour that has no foundation for it to be appropriate, this isnt being silly its science!

NWA6 profile image
NWA6 in reply to Hashihouseman

What do you mean ‘silliness is ludicrous behaviour’ ? Who’s being silly? People who are giving their experience on what’s worked for them? I’d take someone’s experience over a science study any day, if that’s silliness then call me a clown because it was only after the experience of these ‘lay people’ on this forum that I became well. Every NHS Dr and Endo I’ve seen has told me that what I am doing is wrong and harmful and I have to ignore the ‘science’ because it means going back to being unwell.

Thank you for replying Hashihouseman, I do appreciate that what you say is what you believe to be true and has come from your experiences. It’s a very valuable contribution to this forum as is most things that are written here. I would just hate for someone to be chasing an allusive number because science says so.

Edited to say, I have no problem with splitting the dose of Levo/T4 as some do with T3. Everyone should try EVERYTHING and less is more at times but I don’t follow the advice with my added T3, I don’t split it, I just down it at breakfast with my T4. It doesn’t make a difference to me.

I only disagree with you about the importance of the TSH numbers.

in reply to Hashihouseman

How accurate is it to compare someone with hypothyroidism to someone with a healthy thyroid glandular?

If you are right - that is, that we should mimic normal human physiology and take mostly T4 and only a little T3 - then we'd need optimal T4 to T3 conversion at cellular level. Many patients with hypoT don't, and it seems especially common for patients with Hashimoto's to have impaired conversion.

Also, I fail to see why taking T4 several times a day would be better; it's often recommended to multi dose T3, due to its short half life, but T4 has a half life of several days so what would multi dosing achieve? I have never seen anyone, be it a doctor or layperson, recommend splitting the T4 dose.

You seem to be suggesting that both NDT and synthetic combo drugs such as Novothyral/Thyrolar contain the wrong T3:T4 ratio for humans. If that were true, nobody would feel well on NDT or Novothyral, let alone T3 only...!

I wish it were that simple; that is, take mostly T4, add about 10% T3, and you will have replicated normal thyroid gland function and will make a full recovery. Millions of posts in online thyroid forums, however, show that it's not that simple.

Hashihouseman profile image
Hashihouseman in reply to

They havent tried! For the reasons you say, and doctrine, tradition and lack of clinical support!

And you are right about the importance of optimal cellular coversion, which is why too much t4 and not enough t3 replacement is so critical.

The functionality of tsh doesn’t disappear under replacement indeed its value as an indication of homeostasis, dynamic equilbrium, increases. Homeostasis by suppression of tsh cuts out all the functionality of tsh and leaves patients with a false set point that may well be sub optimal and leave persistent symptoms. If they are totally well on it great - knock yourself out;)

SilverAvocado profile image
SilverAvocado in reply to Hashihouseman

Hashihouseman, is what you are arguing as simple as this: when a person starts out on T4 therapy (and also on T4+T3), they should start at a low dose, raise slowly, and always compare symptoms on each dose, making sure that they only raise as long as symptoms continue to improve and justify the raises.

I don't think the orthodoxy on the forum would disagree with that. Its just that we're tending to assume people will feel at their best once their freeT3 is high in range (which will likely suppress TSH), and you're assuming they'll feel at their best on a lower dose of hormone.

As long as people raise slowly and systematically, it shouldn't matter too much where any one of us predicts they'll feel most well. Because using this method they'll empirically find out where they really do feel their best.

NWA6 profile image
NWA6

I raise the Levo and see if you can get it up into middle of range. But may not happen as it looks like your conversion is rubbish 😣 but 125mcg of T4 doesn’t seem to be registering.

Currently I’m on 125 x 5 and 150 x 2 plus 20mcg T3. I take mine altogether in the morning. I’ll see what my results are in a couple of weeks but I might need to try more T4 as it was slightly lowered when I added T3 and I’m not sure that was the right move. My T4 is currently 16 (12-22) and my T3 4.8 (3.5-6.5)

What are your Vitamins and Minerals results you were on a similar dose 8 months ago weren't you.

SilverAvocado profile image
SilverAvocado

Apollo_Creed, in terms of thyroid results, particularly once were taking T3, the most important number is freeT3. Most people feel well with freeT3 high in range. I had thought this was a very uncontroversial thing to say, but in this thread you've had a lot of people disagreeing!

For a healthy person, most people will have freeT4 and freeT3 close to the centre of the range. Once on hormone replacement we need higher numbers. Yours haven't even reached the unmedicated healthy person level, yet, so I think it's pretty clear you have room for a raise if you want one.

The question of whether to raise T4 or T3 is more of a judgement call. You may be limited for practical reasons. Most people tend to like raising T3, because adding it made them feel better. A small number of people feel better with decent freeT4 levels, although theoretically it doesn't matter.

As others have mentioned, its worth looking into vitamins at the same time.

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