Muddled re next steps with T4 and T3: I recently... - Thyroid UK

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Muddled re next steps with T4 and T3

diamondial profile image
18 Replies

I recently had my blood tested strictly following the protocols advised here and the test was at 8am. My results were as follows

TSH: 0.01 mU/l (Range 0.35 - 4.94) -7.41%

FT4: 14.3 pmol/l (Range 9 - 19.1) 52.48%

FT3: 5.4 pmol/l (Range 2.4 - 6) 83.33%

My GP is under the impression I was taking 75mcg and 50mcg T4 on alternate days whereas I have been continuing to take 75mcg daily. This was because my previous T4 result had been 11.8 with the range as above and no T3 taken so I felt it inappropriate to reduce the T4. I had informed her I was taking T3 but she has not asked what dosage - I’ve been taking 12.5mcg. She has now reduced my T4 to 50mcg daily and when I went to order my prescription online there was no option for 25mcg to be ordered. On my previous dose I have been feeling okay although I have noticed having palpitations sometimes with my heart beating visibly through my clothes with occasional missed beats. I have also been exercising very hard. I have been intentionally and with difficulty losing weight and now weigh 8st 7lbs (54kg). Since my results above I have halved my T3 so am taking 6.25mcg daily - it’s a Tiromel tablet cut into 4. I’m wondering if I’ve done the right thing? Also I don’t know what to do re the T4. I’m going on holiday in a week so have put in my repeat prescription request for 50mcg as they take 5 days to fill it. I do have about 3 weeks worth left of 25mcg so at the moment am still taking 75mcg daily. I’m sorry this all sounds rather confusing but I’d be very grateful for the informed advice of people on here as to whether I am right to have halved the T3 and what my next steps re the T4 should be. I’m in a muddle!

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18 Replies
DippyDame profile image
DippyDame

Above results...

The first thing that strikes me is your high FT3....possibly the cause of palpitations and missed beats

Why are you taking T3...there are no clear signs of poor T4 to T3 conversion ( high FT4 with low FT3) but bear in mind T3 will skew the results.

Your daily dose was 75mcg T4 plus 12.5mcg T3

T3 now reduced to 6.25mcg

Did you start T3 trying to reduce weight....if so, not a reason to use T3!!

T3 will naturally reduce both TSH and FT4

You are correct....you have got yourself in a muddle and it looks as if both you and your GP need to better understand both T4 and T3

Is GP dosing by TSH? Wrong! It is not a reliable marker and fluctuates throughout the day.

thyroidpatients.ca/2021/07/...

And, if your GP is treating you she needs to know exactly which thyroid hormones you are taking...and how much. Otherwise treatment will fail.

I get the impression tht weight gain is your prime concern. If this is the result of hypothyroidism, where fluid accumulation is the usual cause then correct medication is the solution.....initially levothyroxine.

Exercise will not reduce hypo weight gain in the long term....and may even be detrimental

btf-thyroid.org/thyroid-and...

Reading between the lines it look to me as if you were never optimally treated with levothyroxine....was 75mcg your highest dose. I suspect you may need nearer 125mcg levo.

We don't normally introduce T3 until higher doses of mono T4 have been trialled in an attempt to raise FT3 to a therapeutic level.

Have you optimised vit D, vit B12, folate and ferritin....essential to support thyroid function

In your shoes I would drop the T3, wait a couple of weeks while continuing on 75mcg only. Then increase levo to 100mcg. Wait 6/8 weeks and test again. Adjust dose as necessary then.

Just my thoughts...

FYO....Due to a form of Thyroid Hormone Resistance I need a supraphysiological dose of T3-only to function so have some experience in it's use.

Have a lovely holiday.

diamondial profile image
diamondial in reply toDippyDame

Many thanks for taking the time to reply. 😊 I started T3 about 7 years ago as at that time my T4 was 66% through range and my T3 30%. I was falling asleep in the afternoons and very tired most of the time. I was beginning to exercise then and could not get any improvement. When I began the T3 the difference was marked. No sleeping in the afternoon and when I was cycling I no longer had to keep stopping because my energy just ran out and also apparently no longer looked like a very red tomato! I haven't taken the T3 to aid in weight loss and it's made no difference to that anyway. I've lost weight by exercising and eating not a great deal over a very long time. I am though wondering if now I am lighter (by about a stone) if my needs for T4 or T3 have reduced? So, I was thinking to maybe write to my GP and explain the dosage of T4 and T3 I was taking at the time of the blood test. Let her know I've halved the T3 and ask if I could continue for the T4 at 75mcg and re-test in 6 weeks. Do you think that makes sense? I am really scared of the old exhaustion returning.

DippyDame profile image
DippyDame in reply todiamondial

I fully understand your concern about exhaustion....I could barely function at one stage and my lack of cognitive function was frightening.

Did you work out why FT3 was low 7 years ago...were your essential nutrients optimal....I suspect not.

Your early labs do suggest poor conversion but that may have improved......nurients!

Can your GP prescribe higher doses of levo? Mine did, up to 200mcg, before I knew I had to introduce T3.

As far as I know endos are not involved, until a problem a GP cannot treat arises, or if T3 is required. But I'm in Scotland....might be different where you live.

Although weight loss wasn't your aim I think the raised FT3 helped that. Metabolic function relies on T3, if available T3 is low then metabolism runs slow and calories are not burning up to provide energy.... weight gain and exhaustion follows

T3 is important to enable oxygen to enter the cells.....low T3 results in lower oxygen levels.

In other words low T3 can make us feel as if our batteries have gone flat!! So, initially we need to take enough levo to provide T3....I'm sensing that hasn't yet happened

I think it's too soon ( maybe not in years but in progress!!) to start self medicating with T3 so your plan to write to your GP makes sense to me. I did exactly that when I started to self medicate with T3 because I felt it was only considerate to keep my GPs informed....they now understand my situation.

Ask if GP will agree to a trial 75mcg daily ( the word "trial" allows them to think they are still in control....rather than a straight out ask!!)

Also say you wish to add 6.25mcg T3 (if that gives you more confidence meantime)

Ensure essential nutrients are optimal

Maintain a steady daily dose of 75mcg Levo plus 6.25mcg T3 fo 6/8 weeks then test....at least TSH, FT4 and FT3

Those new labs will point to the way forward....post them if you wish us to comment on them...and any adjustments can then be made on the basis of a reliable test

We all get in a muddle at times so don't blame yourself....I learned a lot from my mistakes!

Take care.

diamondial profile image
diamondial in reply toDippyDame

Thanks so much. Yes the exhaustion is very debilitating and I think unless you've suffered it, it's very hard for other people to understand. I do get annoyed with myself as I just often seem to be very foolish. However, I think writing to my GP and asking for a "trial" is a good idea! I don't have the bit of paper now, and it's not in my online test results, but I think when I was first diagnosed my T3 was 3.1 when at that time the range started at 3. Although diagnosed it must be around 20-25 years ago I was suffering from exhaustion long before that, falling asleep while taking dictation, during meetings and having to lie down after visits to shops. I hate this damn condition. As an aside, my paternal grandmother who died before I was born, was described as being very lazy, hardly ever moving and with a strange moon face. Makes you wonder...

DippyDame profile image
DippyDame in reply todiamondial

I'm convinced that I've inherited thyroid disease tho I think my type is a different form. I certainly know that I inherited the Dio2 polymorphism from both parents?....but how much more?

I'm 79 and I first knew something was wrong in my late 20s

My thyroid journey is related in my bio....it might help you feel less alone and certainly not foolish!!

I hate it too...and it still causes me problems as a result of damage done by decades of low cellular T3....that was explained to me by our much missed late diogenes

Wishing you well...

diamondial profile image
diamondial in reply toDippyDame

I do wonder whether I inherited the problem. I'll never know. I'm 71 and when I was diagnosed my late sister commented that she wondered why I would always lie down when I came in from anywhere and just thought I was lazy! I suspect like you that I had the problem undiagnosed for quite some time. I was in my mid to late twenties when I was falling asleep while taking dictation. I will read your bio later - thank you. I do though know that I do very stupid things and don't keep proper records etc - really just foolish! Sigh. As my school reports used to say, must try harder.

Gillybean1 profile image
Gillybean1 in reply toDippyDame

Hello DippyDame,

Would it be possible to PM you please for your advice ?

Kind regards, G

helvella profile image
helvellaAdministrator in reply toGillybean1

I do my best never to answer things in private messages which can be asked on the forum.

There are many reasons for this:

I might make a mistake and give bad advice. And other members will not see what I have said so it will not get noticed and (hopefully) corrected.

I might not be around to answer follow up questions. On forum, there is a reasonable possibility of someone else stepping in to answer/reply.

If I am not around, I would feel bad at leaving your follow up question unanswered.

Finally, it puts pressure on the person you are asking if they really want or need to be doing something else.

Gillybean1 profile image
Gillybean1 in reply tohelvella

Hello Helvella,

Im really sorry, I didnt mean to do the wrong thing.

Every best wish. G

helvella profile image
helvellaAdministrator in reply toGillybean1

I rather overdid that but it was because I was trying to explain and not just say "Don't!"

:-)

Gillybean1 profile image
Gillybean1 in reply tohelvella

Understood. No problem G

DippyDame profile image
DippyDame in reply toGillybean1

Sorry, but I would rather try to answer any questions you may have on the open forum.

Gillybean1 profile image
Gillybean1 in reply toDippyDame

Hello DippyDame,

Im so sorry, I didnt mean to do the wrong thing, or upset you . I didnt want to jump in on Diamondial's post.

It was just that Diamondials thyroid results are so similar to mine, and i was optimistic for myself about your comment that the T3 was high here. I believed our T3 was meant to be near top of range and T4 mid to high in range .....im wondering now if maybe my T3 is too high for me, because of the NDT ratio. Levo gives me hives.T3 only a disaster.

Every best wish and kind regards, G

DippyDame profile image
DippyDame in reply toGillybean1

It's fine, no need to apologise.

We tend to prefer to keep advice on the open forum so everyone can share/ comment.

I'll have a look at your previous posts later and reply when I have a better idea of your problem.

SlowDragon profile image
SlowDragonAdministrator

previous post shows quite likely that you need 75mcg daily

healthunlocked.com/thyroidu...

Obviously because your T3 is self sourced your GP unhappy at low TSH

To maintain Levo at 75mcg daily on prescription will need to see thyroid specialist/endo or self source 25mcg off prescription

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who do prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

when were vitamin levels last tested

Looking at previous posts you have had low vitamin levels in past

diamondial profile image
diamondial in reply toSlowDragon

Many thanks for your reply. I haven't had vitamin levels tested for a while. I'll have to check when these were last done. It did cross my mind that as I quite often take betain hc+pepsin with my evening meal could my vitamin levels have improved with better absorption and so maybe the conversion of T4 to T3? It's the only other thing I take other than thyroid hormones. I think I might self-source the 25mcg T4 and keep my fingers crossed that I might be eventually able to stop the T3 if I am indeed converting better. 🤞

SlowDragon profile image
SlowDragonAdministrator in reply todiamondial

Many (most?) thyroid patients need to supplement vitamin D, magnesium and vitamin B complex continuously

Some also need separate B12

Others often struggle to maintain good iron/ferritin

Test all four at least annually

diamondial profile image
diamondial in reply toSlowDragon

I'll look up my results later and if, as I think, I haven't had these tested for ages, when I write to my GP I'll ask for these too and if I have difficulty I'll get them done privately. Many thanks again. 😊

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