Interpretation of my results x : Hi everyone... - Thyroid UK

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Interpretation of my results x

LauraBryant profile image

Hi everyone

Some advice please 🙂

My t3 is in range but t4 over medicated and TSH 0.03

First time they actually let me test t3 in about 10 years!

Do I reduce meds? I feel really good but worried about results but GP said all fine?

I reduced them in March and felt horrid!! I left my door open all day, nearly crashed my car, forgot school pick up and all sorts

Maybe I am not converting to t3?

Screenshots attached.

Laura x

Ps I have my thyroid (born without)

54 Replies

I often have fT4 very over range , and like you , i felt really bad when i tried a reduced dose . So GP reluctantly allowed me to put dose back up despite the high fT4 ..and a few months later my fT4 went down quite a lot by itself anyway ...

The whole exercise was quite damaging because like you i'd actually felt very well at the start of it .. and it took many months to get back to felling anything like where i was ,,, and some jobs remain undone to this day.

So my attitude now is that the time to mess with your dose is when you feel unwell, and when you feel well , you should leave it alone.

Your GP is also happy enough with these results. (which is unusual , but possibly just shows he's enlightened and/or remembers what happened when you reduced previously.. many people here wish they had GP's who would say "OK carry on if feeling well"

TSH is not totally supressed so don't worry about that . ( A long term Study of people on Levo found heart /bone risk factors for TSH 0.0.4 to 0.4 were no greater than risk for 0.4 -4... they did increase if TSH below 0.04 , but they are still very small 'theoretical' risks , and you have to put those in context of 'actual' quality of life . I can find you some links to posts on this subject if you are interested.. i looked in detail because my TSH was 0.05 ish for years )

As for the high fT4 , well, OK probably not ideal , there could be some as yet unknown risk factors associated with having high fT4 ... but if you feel very well i wouldn't lower dose based on just one blood test.

The more important one for showing overmedication is fT3, and that one is not high at all.

How long was the gap between the last dose of Levo and the blood test?

(if too close together that would account for the high fT4 )

ADDED.. if you'd said you felt unwell ,then i'd say same as Greygoose ,, ie. about lowering Levo and adding someT3.. but since that is such a massive ongoing battle with GP's /Endo's / sourcing T3 etc . and usually involves messing things up before they get better .. i don't see any need to bother trying it if you feel well as you are.

Thank you for your long and helpful reply. I appreciate it so much!!!

So my sleepless night isn’t worth it?

I actually did take my meds at 630am and blood test at 1030am but my last blood test when I took no meds the day before (5 months ago) my TSH was 0.11 and T4 20.7

That was also with a slight weight increase which I am now actively trying to achieve again.

Yes please to links.

I am so so paranoid about osteoporosis as my menstrual cycle isn’t regular too. I take bone supplements in the evenings along with multivitamin but my b-12 and vit d all in normal ranges x

I actually did take my meds at 630am and blood test at 1030am but my last blood test when I took no meds the day before (5 months ago) my TSH was 0.11 and T4 20.7

Ok , so that the cause right there .. you can stop worrying about high fT4 now :)

about 4 hrs (give or take ) after you swallow a Levo tablet , it all gets into your blood all at once so if you test around that time ,, you get an unusually high fT4 result .

If you'd taken the test min12/ max 24hrs after last dose, then fT4 result would have been quite a bit lower.

will find links after had some coffee X

Would you say a TSH of 0.11 and t4 of 20.7 ok? Thank you and enjoy your coffee! My fav part of my day :) x

absolutely fine in my opinion.. (assuming same fT4 range [11-20.2] ? ) then 20,7 is fine and TSH 0.11 wouldn't worry me at all ..

(In an ideal world i'd prefer if my TSH could be over 0.03 , but i wouldn't freak out if it wasn't on the dose i needed to feel well.)

Thank you so much xxx

I’ll ask the GP to retest in a month or so and not take any meds for 24 hours?

Think I should see a specialist to be sure?

Excited for the links when you have a moment xxx

if you feel well , i would do none of those things .. if it ain't broke don't fix it. you know your fT4 is not really that high it's just because of how close you took your levo , no need to prove it.

Asking a specialist /or GP to get involved further when GP already said "OK carry on" will just push them to start worrying about over range fT4 /under range TSH , and the end result will most likely be someone telling someone else to lower your dose again.

They won't know half as much about the issue of 'risks' as we do here , they just see the headlines.. and they will be under pressure from peers to not allow patient to have out of range results ... and because you asked for further attention they will want to find something to change .. and the most obvious thing is to lower your dose.

Most Gp's/ Endo's don't even think about time of last dose /test .. they just aren't taught that it matters. but we know it does , even vet's who treat hypothyroid horses with Levo know that it does.

Thank you so so much xx have a happy Saturday xxx

I did a lot of reading about low TSH /risks/ on Levo, as mine had been 0.05ish for over a decade.

I found a large, long term study of patients on Levothyroxine, showing the 'risks' for TSH 0.04 to 0.4 were actually no greater than the risks for TSH 'in range' (0.4 -4)

The risks did increase for TSH below 0.04 , but most of them were still less than risks for TSH over 4 ... (the recent NHS guidelines say they don't need to treat hypothyroidism unless TSH is above 10 .. so they are clearly not so worried about the risks of TSH over 4 )

The link to that study is duplicated in my replies to the following posts, but i'll include links to them all ,as they all have some interesting/reassuring discussion on the subject of low TSH/Risk.

healthunlocked.com/thyroidu... tsh-and-bone-density?

healthunlocked.com/thyroidu... suppressed-tsh-dangerous-wheres-the-evidence?

healthunlocked.com/thyroidu... tsh-and-the-more-mature

healthunlocked.com/thyroidu... risks-of-suppressed-tsh-analysis?

healthunlocked.com/thyroidu... dangers-of-suppressed-tsh?

healthunlocked.com/thyroidu.... Suppressed/low TSH -Osteoporosis and Atrial Fibrillation evidence.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

There ARE good reasons to try to keep TSH a little higher (closer to 1 than 0) if only taking Levo without any added T3.

.... TSH drives the deiodinase enzymes ,, and they are responsible for how efficiently you convert the inactive T4, to active T3 (that works in your cells)

So , Less TSH means you're probably getting less T3 out of your T4 than you might get if TSH was a little higher.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Re. over range T4.... i've had a look into this as i have very over range fT4. i'm not too worried, ( and if you can feel well using high fT4 to get enough fT3 , this is the easiest way to achieve it without all the hassle of getting T3/NDT , so being pragmatic, it's probably worth at least trying higher fT4 first before going to added T3 )

.... but i have found odd little bits of info which do possibly give some cause for concern . See my 2nd reply to this post for links: healthunlocked.com/thyroidu... over-range-t4?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you. Gosh what a minefield!

I’ll have a proper read this evening and try and get my head around whether I reduce meds or not I guess.

Gosh I could cry :( x

wellness1 profile image
wellness1 in reply to tattybogle

There ARE good reasons to try to keep TSH a little higher (closer to 1 than 0) if only taking Levo without any added T3.

.... TSH drives the deiodinase enzymes ,, and they are responsible for how efficiently you convert the inactive T4, to active T3 (that works in your cells)

So , Less TSH means you're probably getting less T3 out of your T4 than you might get if TSH was a little higher.

I've been wondering what level of TSH is necessary to facilitate periperal deiodination. Is it more a matter of 'the more the better (toward about 1)' or 'every little helps'. I've not had a chance to look into this, and since you've done all this brilliant reading, I'm curious whether you've read anything about it.

The caveat you added about keeping TSH a bit higher if on Levo only... is this because of the TSH-suppressive effects of T3? Hypothetically, is it worth considering trying to raise the TSH a bit in the hope that less/no exogenous T3 is necessary? (as long is it wasn't too misery-inducing, of course)

Thank you.

The only way to achieve this is to reduce my levothyroxine and that would in turn reduce my T3 which isn’t high. In fact could do with being higher.

I’m a bit lost :( x

"I’m a bit lost :( "

Don't worry about all this complex deiodinase stuff . you'll just get a headache .. if you currently feel well , none of it matters. It takes a long time to very slowly understand what all this thyroid terminology means , so don't get worried it it makes no sense at all.

xx

Thank you xxx

It can be confusing, but you're already getting loads of good advice. You raise a good point, but let's see if tattybogle, who's very insightful on this, has any info. For that matter, some other knowledgable members may chime in. I'm not suggesting you make any changes, especially as you're not feeling symptomatic and your GP isn't hassling you over results. Sorry for asking my question on your post if it's only going to make things more confusing, but maybe you're interested, too. 🙂

If you're concerned about your bone health, being pre-menopausal you're in a position to take steps now, which is briliant. Along with the recommended supplements, do you do weight-bearing exercise?

Thank you.

No just walking but I’ll start doing some resistance weight stuff at the gym again I think ? X

tattybogle profile image
tattybogle in reply to wellness1

Good question .. i was once looking for the answer, but i only ever found one thing and made the following note (.. and because i'm an organisational genius i didn't write down which research paper i got it from ... Doh!)

Any way for what it's worth , my note says ;

"high tsh only increases Dio activity in thyroid gland + other TSH receptor tissues

( peaks at 1/ decreases at >1 ) ...."

which i took to mean it doesn't get any better after you get to 1, which surprised me, I'd assumed more TSH = more conversion ..... but i remember reading the complicated paragraph (wherever it was) several times and couldn't make any more sense out of it than what i wrote in that note.

Sorry that's about as much use as a chocolate teapot .. i meant to ask diogenes about it .. but forgot.

I put 'on Levo only' because so often you see on here that once people take any extra T3, their TSH is lowered so much anyway that no matter what they do with doses it doesn't come up much .. and also because i think if you are taking extraT3 , then presumably it matters less how much you can convert by yourself.

So . if i was taking T3 (which i haven't) i don't think i'd mess with trying to get TSH up a bit to get more T3 out of Levo. ..i'd probably just adjust the T3 dose to get what i wanted.

But if using just Levo it's worth an experiment to see what happens to fT3.

This is all theoretical .. cos i've never used T3 , and i can't afford blood tests so 'sods law' applies

ie. whenever i'm really interested in my fT3 Level the NHS don't do it, and when i'm not interested , (but they want to shout at me about my dose) they do .. so my personal evidence on the subject of T4 to T3 conversion at various TSH levels is 'limited' .

Thank you. That makes sense.

It’s so hard as I havent got a gland at all so scared to mess about too much and have always been told not too but every GP is different! God knows :( x

wellness1 profile image
wellness1 in reply to tattybogle

Thanks for this. Yes, maybe diogenese knows about this, or perhaps jimh111, who has posted about the role of TSH in deiodination. If raising TSH by a few hundreths isn't going to matter, then it could be a fool's errand.

So . if i was taking T3 (which i haven't) i don't think i'd mess with trying to get TSH up a bit to get more T out of Levo. ..i'd probably just adjust the T3 dose to get what i wanted.

Fair point. In the realm of obscure and perhaps unknowable information, I suppose it's possible the body's own ability to produce T3 could be a smoother way of going about it (affecting TSH less?). And not having to source T3 is definitely a smoother way of going about things.

tattybogle profile image
tattybogle in reply to wellness1

further into the realms of the obscure and unknowable (sorry LauraBryant not intending to confuse, just nattering ) .. i have often thought that splitting one large Levo dose into smaller amounts through the day (as nature does it from thyroid gland) might have less of a lowering effect on TSH than one big daily dose.... and might therefore be helpful to get the most T3 possible from the Levo we do take. Since i started taking my 112.5mcg Levo dose as 2 halves (first thing AM and last thing at night 3 hrs after food) , my TSH which was always around 0.05 , rose to 1.9 for the first time in many years .. sadly NHS didn't do fT3 that test , and it could have been one off anyway , but an interesting experiment .

'Hashihouseman' has similar theories on this re. splitting Levo , but he splits it into even more smaller doses.

Interesting!!!!

I’ll have a chat to my GP x

Most GP's would probably say "Levothyoxine is a storage hormone it lasts for ages in the body , it wouldn't make any difference if you took a whole weeks worth in one go , so it's not possible there is any difference if you take it in two halves though the day, and if you think you feel different doing that you're kidding yourself.... have you been talking to those militant thyroid nutters on the internet ? "

.... because that's what the Ladybird Book of "How to treat hypothyrodism using Levothyoxine and TSH tests" tells them .

And they will probably also tell you that "fT3 is a useless test cos it varies too much over the day.."

.... but the same GP will usually have no idea that the TSH also varies over the day and is highest in the middle of the night falling to it's lowest in the early afternoon.

Sadly all of that is true!!! X

I take bone supplements in the evenings along with multivitamin but my b-12 and vit d all in normal ranges x

greygoose may have something helpful to say about 'multivitamins'

Yes please! Any insight is helpful :) x

You shouldn't be taking a multivitamin anyway for all sorts of reasons.

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.

* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.

*Vit C should be taken 2 hours away from B12 because it affects how the body uses B12.

*Never take magnesium/zinc/calcium at the same time as they affect the absorption of each other.

*Take zinc and copper separately as zinc affects the absorption of copper.

*Vits A/D/E/K are all fat soluble vitamins, and if taken together can compete for the source of fat. They are best taken away from each other.

* The magnesium you take - and just about everybody needs to take it - should be chosen according to what you want it to do:

Magnesium citrate: mild laxative, best for constipation.

Magnesium taurate: best for cardiovascular health.

Magnesium malate: best for fatigue – helps make ATP energy.

Magnesium glycinate: most bioavailable and absorbable form, non-laxative.

Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.

Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.

Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.

With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D. :)

Wow!!! That’s such a wealth of knowledge. Thank you so much!!

This was the supplant I was taking for years as TTC.

cytoplan.co.uk/pregna-plan?...

I shall stop and just take vitamin d and c I think? X

Be a good idea to stop it, yes. It contains iodine. I doubt you need to take that every day!

Don't forget the if you take vit D, you also need to take magnesium and vit K2-MK7. :)

Thank you so much xx

So this could have caused the issues? As it’s iodine? Maybe lowering my t3?

I have a magnesium supplement from the same company. Which I haven’t taken but will now.

cytoplan.co.uk/biofood-magn...

So vit D, Vit C and this is ok?

I’m

So vit D, Vit C and this is ok?

Plus vit K2-MK7. Taking vit D increases absorption of calcium from food. Taking vit K2 makes sure that calcium goes into the teeth and bones, and doesn't build up in the soft tissues and arteries.

Perfect thank you xxx

You're welcome. :)

Just to clarify I will be taking vitamin c supp, a magnesium supp and a combined vit d and vit k2 supp every evening in one go (I take my Levo in the mornings).

Is that ok?

Laura

That sounds ok to me. :)

SeasideSusie profile image
SeasideSusieAdministrator in reply to LauraBryant

LauraBryant

I am so so paranoid about osteoporosis as my menstrual cycle isn’t regular too. I take bone supplements in the evenings along with multivitamin

What is in your bone supplement? Calcium? Have you had calcium tested to show you need it? Not a good idea to take calcium if you haven't tested. Vit D and Vit K2-MK7 are very important for bone health. Have you had Vit D tested?

Multivitamins aren't recommended here for many reasons. They tend to contain too little of anything to help low levels, they usually contain the cheapest, least absorbable and wrong forms of ingredients, and often contain things we should test for first and only supplement if deficiency, eg iron, calcium, iodine. If it contains iron then that affects the absorption of everything else, iron needs to be taken 2 hours away from other supplements.

but my b-12 and vit d all in normal ranges x

Just being "in normal range" doesn't necessarily mean that your levels are optimal. Can you post these, along with their units of measurement, and we can see if you need to improve them.

Were Folate and Ferritin tested?

Thank you so much. Posted the results below.

I haven’t been advised to take calcium but it was in my multivitamin I took -

Cyctoplan Pregnacare (was trying to conceive for 2 years) x

Results
SeasideSusie profile image
SeasideSusieAdministrator in reply to LauraBryant

LauraBryant

What was your bone supplement?

You don't need calcium although there should be a range for the test so I don't understand why it says N/A. When I've had mine done by the GP there are two tests:

Serum calcium with a range of 2.2-2.7 and

Adjusted calcium with a range of 2.2-2.6

Vit D is OK although the Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.

I imagine B12 is high due to supplement.

Ferritin is OK, it's normally recommended to be half way through range although some experts say that the optimal level for thyroid function is 90-110ug/L.

Very helpful and insightful. From these would you say there’s anything to worry about? X

SeasideSusie profile image
SeasideSusieAdministrator in reply to LauraBryant

LauraBryant

I don't think there's anything to worry about, personally I want all my nutrient levels optimal:

Vit D - 150nmol/L

B12 - top of range for Serum B12, over 100 for Active B12

Folate - at least half way through range

Ferritin - 90 if I can achieve it

Whether you want to improve yours is a personal thing.

You haven't answered the question about what your bone supplement is. Are you still taking it?

Thank you so much. I’ve only just started taking it (last night).

It’s this one…

cytoplan.co.uk/bone-support...

But from what you’ve said I won’t take anymore?

How do I make my levels optimal like you?

Diet?

Thank you xx

You are a very poor converter, and need that much T4 to get a tiny amount of T3. If you reduce your levo, your FT3 level will also drop. You really need some T3 added to a reduced dose of levo. Have you asked your doctor about this?

Thank you. I’m going to request a specialist appointment and just pay for it and have full thyroid med blood tests I think x Thank you.

That’s why I felt awful when dropped then x

Absolutely yes. Lowering your dose would make you feel bad.

Thank you so much xx

Hey there again ;

Well, taking your T4 before the blood test has obviously skewed the results and why your T4 appears over range ;

The TSH is very slow to move and since you haven't a thyroid it's essential you are dosed and monitored on your T3 and T4 blood test results.

Generally speaking we feel at our best when the T4 is in the top quadrant at around 75% as this should in theory convert to a high T3 as it is the T3 level that causes all the symptoms of hypothyroidism.

Too high a level of T3 for you and you may experience symptoms of " over medication and hyper type symptoms " - just as too low a level of T3 for you and you'll likely experience symptoms of hypothyroidism.

There is a full list of symptoms experienced on the Thyroid UK website who are the charity who support this forum, and irritatingly, some symptoms sit on both hyper and hypo symptoms, so it can get a bit confusing.

No thyroid hormone works well until you have optimised your ferritin, folate, B12 and vitamin D and, if necessary, maintained them long term, at these levels.

The accepted conversion ratio, when on T4 only medication is 1 / 3.50 - 4.50 - T3 / T4 with most people preferring to com in at around 4 or under.

To find your conversion ratio you simply divide your T3 into your T4 :

So, on these last results, which we know are wrong, as the T4 was inflated, you are coming in at 6.0 - so way out of the accepted range, and this result will change again, when we have a correct reading.

So, next time the test is run, hopefully we will have an accurate reading and can say more about your ability to convert well the T4 into T3 :

It would also help to have readings of your ferritin, folate, B12 and vitamin D - stop any supplements a week before hand, and then we will have a clear idea of what your body is holding onto.

A fully functioning thyroid would be supporting you on a daily basis with trace elements of T1 and T2 and calcitonin, plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg so in my little head, I think, no doubt, you might be missing a little something on paper, but since you were born without a thyroid, maybe not ??

Thank you that’s very insightful!

Well I didn’t take my meds before my test (5 months ago) t4 was 20.7 and tsh 0.11

Does that help with the calculations to see how medicated I am?

Thank you x

I’ve attached my other bloods for you to see

Results

Well, I can't see a T3 on this screen shot : Is there another page ?

and on these results from 5 months ago you received replies on the optimal levels to achieve on these vitamins and minerals and I can't really add much more until we see a T3 and T4 taken from the same blood sample.

Here they are x

R

OK then so if we take the above results which are not accurate as you took your T4 before the blood test :

You have a T3 @ 4.10 and a T4 @ 24.50 - so if you divide the T3 into the T4 you get 5.97 :

So rounded up, let's say 6 which shows poor conversion and way out from the middle ground of around 4 : which I think logical and inevitable in someone with congenital hypothyroidism.

Thank you very much. So I guess I just carry on as is?

Xxx

Well no:

As, I'm presuming you are still unwell and looking for help in getting better health.

I would talk with your doctor and ask for a referral to an endocrinologist -

but first get the list of sympathetic, recommended endos and specialists both NHS and private held at Thyroid UK head office, details on their website as to how to obtain it, and try and be referred to someone who prescribes both T3 and NDT :

Alternatively, or also, ask for other forum members to recommend you, by private message ( PM ) endos / doctors they have found supportive and helped them get back to better health.

Thank you x

You doctor may well suggest your T4 dose is reduced as your result is over range.But this will reduce your already too low T3 .

The logical solution is to drop a little T4 BUT ADD a little T3 - which will rebalance both your T3 and T4 in the ranges.

Currently GP's are not allowed to prescribe T3 Liothyronine - and you need a referral to an endocrinologist.

Getting T3 prescribed on the NHS has become a post code lottery.

If you go to - analyseopenprescribing.com - you can see by surgery and or CCG how active your surgery and area are, in prescribing T3.

Since you have no thyroid you may like to consider taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland.

Conversely you might prefer taking synthetic T3 and T4 to rebalance your levels.

I have explained all this to you already, please refer back if in doubt, and I'm happy to explain further if I do not make any sense, when you read this in parallel to what I posted previously.

No it’s super helpful Penny. I’m really grateful, thank you.

Laura xx

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