Got my results & T4 & T3 ok but TSH high - Thyroid UK

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Got my results & T4 & T3 ok but TSH high

Polly91 profile image
22 Replies

Hello

I’m disappointed to report T4 was high 22.4 and T3 was 3.9 so it doesn’t look like I’m under medicated.

TSH which I didn’t think had been done apparently was done & is 3.94.

So neurologist was right it’s not likely to be my thyroid causing the peripheral neuropathy.

I don’t have units as I’ve not seen the results but my ferritin was 200 & vitamin D 104

I’m worried it is some auto immune demyelination of nerves as the symptoms fit there.

If anyone has any thoughts/ suggestions I’d be very grateful.

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Polly91
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SlowDragon profile image
SlowDragonAdministrator

Can you add the ranges on these please

FT3 looks low, but need range to be certain

Polly91 profile image
Polly91 in reply toSlowDragon

Hello SlowDragon

Thanks for quick reply. Dr who called me said both T3 & T4 were high and that T4 is the important one of the two! He said TSH was high (3.94) but didn’t think I was under replaced because my T4 is so high (22.4).

I don’t have the print outs with ranges but just looking at the ones done last year they were

T4 (12-22 pmol/L)

T3 (3.2-6.8 pmol/L)

So this dr who gave me results over phone may not be right about T3 as last Aug it was 4.2 & now it’s even lower. But T4 has gone right up?? TSH has gone up a bit.

What do you experts think ??

greygoose profile image
greygoose in reply toPolly91

OK, so we have another ignorant doctor, here! It's the FT3 that is the most important one. T3 is the active hormone, T4 is the storage hormone. And your T3 is anything but high! It's scraping along the bottom of the range.

Your TSH is high because your FT3 is so low.

And your FT4 is so high because it's not converting to T3.

You are a very, very bad converter and really need to have T3 added to a reduced dose of levo.

So, that doctor is wrong all along the line. It's shameful! What do they teach them in med school! :(

Polly91 profile image
Polly91 in reply togreygoose

B***dy hell! These doctors. How can they be so wrong. That’s 2 GPs & a neuro surgeon & a neurologist???

So T4 just stays in body once you take levo if you cannot convert it into T3?

What should I ask for assuming GP will be willing to prescribe T3? I’m on 75mcg levo at the moment. (I was on 125 mcg for years but dropped to 75mcg in Oct 2016).

I have a feeling he will just say take 25mcg extra of levo! What would that do? Increase the T4 even higher?

Thank you so much

greygoose profile image
greygoose in reply toPolly91

It's amazing, isn't it! T4 will stay in the body for a certain time, then some of it will be converted to rT3 and some excreted. It doesn't stay there forever!

I'm not sure that asking your GP anything would help, he obviously hasn't even got the basics. I doubt he would understand your need for T3. You can try, but…

Increasing the T4 would just increase the FT4 level, the rT3 level, but won't do much for the fT3. It might be time to start looking at reasons for your poor conversion :

Have you had your nutrients tested? vit D, vit B12, folate, ferritin

Have you had your cortisol tested?

Do you have some sort of virus?

Do you ingest enough calories?

Do you have Hashi's?

Polly91 profile image
Polly91 in reply togreygoose

Sorry but what is rT3 vs FT3? The lab measured FT3.

I will ask about the cortisol test ? Is that blood or saliva?

Also calories could be an issue as I’ve not had much of an appetite (stress worry tired etc)? But how does that influence conversion to FT3?

Virus & Hashimoto I don’t know but antibody test was done.

I really appreciate your help x

greygoose profile image
greygoose in reply toPolly91

T4 converts to T3 and rT3. All the time. But, the quantities vary according to circumstances. When all is going well, it converts to mainly T3. But, in time of sickness, starvation, great stress or certain other factors, it converts more to rT3 than T3. Also, if you have a conversion problem, and the FT4 gets too high in range, it will start converting to more rT3 than T3.

And, the problem is that nobody really knows what effect rT3 has on anything. It is inert, and only stays around for a couple of hours before converting to T2, but we don't know if it has any negative effects on the body during that time. So, best to avoid high levels of rT3, just in case. And, if you are a poor converter, reduce the dose of T4 and add some T3.

There two types of T4 and T3 (also rT3, but nobody talks about that!) : Free T4/3 and Bound T4/3. So, there are two types of test FT4/3 and TT4/3 (also so known as just T4/3). The FT measures the amount of Free hormone in the blood, and the TT measures both Free T and Bound T. As the body can only use Free T4/3, the FT tests are what you normally need.

There is an early morning blood test for cortisol, which is the only one the NHS uses, but it is notoriously unreliable. The best test is a 24 hour saliva test, but you'd have to do it privately. That measures saliva four times throughout the day, so that you get a better picture of what's happening. Because cortisol should be high first thing in the morning, when you have to get up and get ready for the day, then gradually taper off until it's at its lowest at bedtime, so that you can sleep.

Conversion is a bodily process that needs calories to fuel it - like all bodily processes. And, when you're hypo, it needs more calories than when you're not. So, if you don't eat enough, or if you do things like violent exercise - or the two! - then you don't have enough calories to convert T4 into T3 properly. If the body thinks you're starving, it will convert more T4 to rT3 than T3 in order to conserve energy (calories).

If antibody tests were done, you need to find out the results. If you have Hashi's, you need to know. Doctors don't understand Hashi's/antibodies, so often don't mention it, but if you are to understand your disease, YOU need to know because it affects so much. :)

ShinyB profile image
ShinyB in reply toPolly91

I'm still learning and not an expert but I was just about to type the same as greygoose had already replied to you with! You're not converting the T4 to T3 very well at all. If the T4 isn't converted to T3, it can convert instead to Reverse T3 which can cause all sorts of problems as it's effectively a 'brake' on your body.

Are you in a position to be able to source your own T3? It can be very difficult to get on prescription nowadays.

ShinyB profile image
ShinyB in reply toShinyB

As to the peripheral neuropathy, yes it can be linked to the thyroid:

neuropathytreatment.net/neu...

mayoclinic.org/diseases-con...

naturalendocrinesolutions.c...

endocrine-abstracts.org/ea/...

Polly91 profile image
Polly91 in reply toShinyB

I will print these off & leave with all these ill informed docs!

Thank you x

Polly91 profile image
Polly91 in reply toShinyB

Oh gosh I hadn’t heard about the T4 actuslly reversing the T3.

Do you or anyone have any research papers you can point me to? So I can give to my GP?

I’ve spent a small fortune on various tests & Physio recently but I will source T3 if I have to. How much is it & where do I get it from ?

I guess I would have to tell my GP that I’m doing that?

Thank you so much ShinyB

ShinyB profile image
ShinyB in reply toPolly91

restartmed.com/reverse-t3 gives quite a good overview.

This is one of my posts where diogenes commented about T4 & RT3: healthunlocked.com/thyroidu....

I can't put my hand on any research papers but to be honest, I doubt very much your GP would take much notice anyway. Mainstream medicine seem to only look at TSH. It's a bit controversial, even on this forum. Diogenes who I mentioned above does published research. You could try looking at his page and at his posts as he often posts research articles - healthunlocked.com/user/dio...

If you want to source T3, put a new message up asking people to send you a private message with details.

I personally haven't told my GP that I'm self medicating with T3, but as far as my GP is concerned I don't have hypothyroidism anyway! I think it depends on your doc and how open minded they are.

I'm rushing a bit as got to get to bed as travelling tomorrow to a cousin's wedding, so will try to reply more when I'm less rushed!

Good luck! :)

Polly91 profile image
Polly91 in reply toShinyB

Thank you if I don’t get anywhere with GP that’s exactly what I will do to source T3. I hope the wedding is fun ShinyB.

greygoose profile image
greygoose in reply toPolly91

It doesn't actually reverse the T3. That's the name it's given but it isn't exactly that. It's just the wrong iodine atom is removed during conversion so that the resulting T3 doesn't fit into the T3 receptors on the cells.

greygoose profile image
greygoose in reply toShinyB

To be perfectly honest, we don't really know what rT3 does to the body. :)

ShinyB profile image
ShinyB in reply togreygoose

There's so much they're still finding out, and still to be found out, isn't there? But RT3's natural function is to put the brakes on when you're ill so that the body can concentrate on recovery, so to my simple brain lol it's going to be slowing you down if you've got a raised RT3 for other reasons, such as poor conversion!

greygoose profile image
greygoose in reply toShinyB

No, what is slowing you down is the lack of FT3. rT3 is the result, not the cause. If T4 isn't converting into T3, it converts into rT3 and then T2, so as not to waste the T4. But, it's not clear if the rT3 itself actually does anything.

Kell-E profile image
Kell-E in reply toShinyB

I believe that T4 converts at a fairly standard rate unless you have full blown liver disease. What changes is the percentage of T4 that becomes T3 and the percentage of T4 that becomes rT3. So high T4 is not due to what we commonly refer to as 'bad conversion'. The disparity here with fT4 high and fT3 low demonstrates that the conversion percentages favor rT3. And the higher fT4 gets, the situation worsens. So adding T3 and reducing levo are definitely in order here.

SlowDragon profile image
SlowDragonAdministrator

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many, or we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

If you have Hashimoto's (autoimmune thyroid disease) diagnosed by high thyroid antibodies, and/or low vitamin levels then conversion can be badly affected

So it's essential to know if you have Hashimoto's and to test vitamin D, folate, ferritin and B12 levels

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Peripheral neuropathy can be a mix of low vitamin D and low B vitamins, especially B12 and B5.

drgominak.com/sleep/vitamin...

silverfox7 profile image
silverfox7

I wouldn't be in a rush to add T3. Once you add any form of T3 then results are read differently so you can no longer check your converting well or not. Normally you look at FT4 and FT3 and like yours if FT4 is high and FT3 is low then conversion isn't happening as well as it should. But adding T3 means FT3 will rise but FT4 can fall so you can't do a compsrision as only FT3 is an accurate reading.

So get your Vit D, B12, folate and ferritin tested. These need to be optimal, not just in range and they help your thyroid to work better, can help with conversion and can rid you of some symptoms. Plus good for general health but it takes time to improve things if you are very low. You may still need to add in some T3 at a later date but may be not as much so easier on the pocket if have have to get your own. Loads do very well on FT4 once/if conversion can be improved. It will also give you time to see how your body reacts to T4 and for you to understand more.

Polly91 profile image
Polly91 in reply tosilverfox7

Thank you v much Silverfox this is v informative. My vitD probably could be higher (104 nmol/l) I’m not sure what level is optimal as no range provided & all the others you mentioned are within range but not necessarily at top of range except B12 is 867 ng/L (180-700).

Ferritin is 202 ug/L ( 15-300)

Iron 24 umol/L (7-26)

Transferrin 2.93 g/L (2.0-3.6)

Transferrin saturation 33% (15-50)

Folate 9.8 ug/L ( 4.6-18.7)

I have increased my Levo (8 days ago ) by 25mcg & I’ve noticed a slight improvement in tingling.

Do you think my iron & Vits are optimal for T4-T3 conversion? I’d be interested in your opinion Silver Fox.

Thank you

silverfox7 profile image
silverfox7

I'm not an expert on that but they look to be going in the right direction. Look at SeasideSusie's posts/replies. She has nailed this with optimal levels and how to achieve them!

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