reverse t3 diagnosis: my doctor doesn’t recognise... - Thyroid UK

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reverse t3 diagnosis

Scottii profile image
21 Replies

my doctor doesn’t recognise reverse t3

She does all the blood tests but my results indicate hyperthyroid although I’ve been telling doctors for 20 years I’m suffering symptomatic hypothyroidism

My t4 is higher than normal so she says is pointing towards hyperthyroidism

How can you argue

Then I was told by a consultant I saw (on a completely different matter ) when going through all my symptoms - He told me about blood tests and high levels can mean to opposite of what they’re supposed to indicate and to go back to doctor to have levels checked again

2 years and 4 tests later I’m still trying to convince her I’m hypothyroid because of ‘Reverse t3’ but it’s like I’m a hypochondriac going on and on about being hypo not hyper

So the best I’ve achieved so far is I’ve to go back for blood test in 3 months - I know my results will be the same - higher t4 indicating hyper !

Even my nurse taking blood has never heard of reverse t3 - I asked her to look it up - it would be nice to have someone in the surgery look into it as I did only thanks to a neurologist giving me the information

I then read years ago NHS did prescribe combined t3 and t4 and also t3 alone

I can only assume it was stopped due to high costs

But why don’t the doctors know or recognise the possibility of high t4 being an indicator of hypothyroidism when patients complaining of all the associated symptoms but ridiculously try to convince you that’s not the case as blood test says your hyper

It is maddening but if suffered for years because of this and made to feel I’m going crazy that they don’t investigate - Are they following an NHS mandate - Not to test for Reverse T3

Any help would be appreciated as how to proceed

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Scottii
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21 Replies
Hedgeree profile image
Hedgeree

Hi Scottii,

Welcome to the forum.

Are you referring to Free T3 testing?

SeasideSusie profile image
SeasideSusieRemembering

Scottii

Welcome to the forum.

The best place to start to try and help you is if you post your test results, along with their reference ranges, so that we can fully understand what's going on.

Can you please post any results/ranges you have for

TSH

FT4

FT3

Thyroid antibodies

and always useful are

Vit D

B12

Folate

Ferritin

Scottii profile image
Scottii in reply to SeasideSusie

My Ranges are as follows

TSH ………….. L. 0.02 ( mU/L)

FT4 ………….. H. 23.2 ( pmol/L)

FT3 …………., not tested

Total T3 tested 29/03/2021 …… 1.4 nmol/L

Vit D ……….. Dr said normal

B12 ………,.,,, 64.0 pmol/L

Folate ………. 10.9 nmol/L

Ferritin …….. 293 ug/L

CRP ………..,.. H. 8.40 mg/L

Creatinine …. 87 umol/L

Estimated GFR … 56 ml/min/1.73m2 CKEPI eGFR calculation

Total Protein …. 76. g/L

These tests were done on 26/07/2022

I had more recent test by doctor but just said normal for age - in Seventies but complaining since late Forties

Diagnosed enlarged Thyroid Nodules - Fine needle aspiration testing was inconclusive

Don’t know how much this will help - but thanks so much for this site to sort of make sense of what’s wrong with the system where-bye the doctors and nurses don’t understand what I’m trying to say - I’m I’ll - I’ll for years - and only seeing this neurological consultant gave me a eureka moment - I didn’t understand it - only that my ranges are within normal - but there is this situation which works in reverse of what is thought to be normal - I appreciate the comment in using the wrong words to my doctor Free t3 test Not Reverse t3

Thank you all for taking time with helpful comments - I am just sick of doctors telling me it’s normal for your age - I’ve been repeating myself for years - Seen the experts and not one person put this scenario of reverse free anything to me and I have seen 3 different consultants - been told - enlarged thyroid with enlarged nodules - couldn’t carry out successful testing to find out if cancerous or benign - All the symptoms physically and mentally of Hypothyroidism and no one would listen even I felt I had a sick thyroid and driven to distraction by them insisting I couldn’t be as tests are showing I am leaning towards hyperthyroidism - and shown the door - Now knowing this other option I just thought - That’s Me ! Went to doctors just to be told the same old story - so thank you for letting me vent

I have just read in .gov the company producing t3 has been fined massively for extortionate price increases resulting in box of tabs now lowered to £20 s ish Instead of the hundreds they had hiked their prices up to for this drug - So there is hope the doctors will be allowed to prescribe it if you can receive the diagnosis

I’m afraid to hope that one day I could feel and look normal

Thank again everyone

SeasideSusie profile image
SeasideSusieRemembering in reply to Scottii

Scottii

Those are the results but we can't interpret them without the reference ranges, can you add those please. If you have a print out of your results they'll be on there, if you have online access to your results they should be there too. They should look something like

TSH: 0.02 (0.27-4.20)

FT4: 23.2 (12-22)

etc

You also need a result for Vit D, just saying normal means that your result is over 50 yet the recommended level is 100-150nmol/L so you could be far too low. If you need to supplement then the dose is based on your current level with the aim of achieving the recommended level.

B12 ………,.,,, 64.0 pmol/L

Your B12 result is quite worrying if that is the serum total B12 test (rather than the active B12 test which is unlikely if it's an NHS test), so we must have the reference range for that.

Scottii profile image
Scottii in reply to SeasideSusie

ReportMoreScottiiSeasideSusie59 minutes agoMy Ranges are as follows TSH ………L. 0.02 (0.270-4 ) mU/L

FT4 …… H. 23.2 (12-22 ) pmol/L

FT3 …………., not testedTotal T3 tested 29/03/2021 …… 1.4 nmol/L

Vit D ……….. Dr results came back normal - no figures - I take supplements

Active B12 …., 64.0 (37.5-188 ) pmol/L

Folate………. 10.9 (8.83-60.8) nmol/L

Ferritin……H. 293 (13-150). ug/L

CRP………..,H. 8.40 (<3 )mg/L

Creatinine …. 87 (55-100 ) umol/L

GFR … 56 (> 90 )ml/min/1.73m2 CK EPI - eGFR calculation

Total Protein …. 76. (63-87). g/L 

These tests were done on 26/07/2022

SeasideSusie profile image
SeasideSusieRemembering in reply to Scottii

Scottii

CRP………..,H. 8.40 (<3 )mg/L

Ferritin……H. 293 (13-150). ug/L

Raised CRP is confirming inflammation; however, it is a non-specific inflammation marker so can't tell you where the inflammation is.

Ferritin is also raised when inflammation is present so it's almost certain that is not your normal ferritin level and also confirms inflammation.

There is a high possbility that you have Hashi's as Hashi's causes inflammation. If you haven't had them tested already then you should get thyroid antibodies tested:

Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) antibodies. Elevated one or both of these will suggest Hashi's.

Vit D ……….. Dr results came back normal - no figures - I take supplements

You really need to get this result so that you know whether you are taking enough Vit D supplement.

As you are supplementing Vit D, are you also taking it's important cofactors - magnesium (helps the body convert D3 into it's usable form) and Vit K2-MK7 (directs the extra uptake of calcium when taking D3 to bones and teeth where needed and away from soft tissues and arteries where it can be deposited and cause problems).

Active B12 …., 64.0 (37.5-188 ) pmol/L

This is on the lowish side and Active B12 below 70 suggests testing for B12 deficiency according to Viapath at St Thomas' Hospital:

viapath.co.uk/our-tests/act...

Reference range:>70. *Between 25-70 referred for MMA

There is a link at the bottom of the page to print off the pdf to show your GP to support your request for testing.

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.

If you don't then you could supplement with sublingual B12 along with a good quality B Complex to keep all the B vitamins balanced.

Folate………. 10.9 (8.83-60.8) nmol/L

This is very low. Folate is recommended to be at least half way through range. A good quality B Complex will help raise this level but only start that if no sign of B12 deficiency.

If no signs of B12 deficiency then you could use one bottle of B12 sublingual along with a B Complex, once the B12 is finished continue with just the B Complex.

Suggestions for B12 supplements which include two forms of bioactive B12 - methylcobalamin and adenosylcobalamin which you might want to check out:

Cytoplan sublingual B12 lozenges

cytoplan.co.uk/vitamin-b12-...

Nature Provides sublingual liquid

amazon.co.uk/Bioactive-METH...?

Note that the Nature Provides supplement contains a much higher dose than the Cytoplan one.

For B Complex I have used Thorne Basic B for a long time and always been happy. If you look at different brands then look for the words "bioavailable" or "bioactive" and ensure they contain methylcobalamin (not cyanocobalamin) and methylfolate (not folic acid). Avoid any that contain Vit C as this stops the body from using the B12. Vit C and B12 need to be taken 2 hours apart.

When taking a B Complex we should leave this off for 3-7 days before any blood test because it contains biotin and this gives false results when biotin is used in the testing procedure (which most labs do).

TSH ………L. 0.02 (0.270-4 ) mU/L

FT4 …… H. 23.2 (12-22 ) pmol/L

FT3 …………., not testedTotal T3 tested 29/03/2021 …… 1.4 nmol/L

Total T3 is not a particularly useful test, it measures both total and free T3 and it's the free T3 that tells us what's available for the cells to use. Was Free T3 included in your Thriva test?

I think your TSH and FT4 could suggest Hashi's which often starts with a transient hyper episode.

Scottii profile image
Scottii in reply to SeasideSusie

SeasideSuzi and Slow Dragon and RedApple and greygoose and Purple Nails and jazzw and Hedgeree

I want to thank you all so much for taking your time and energies to try help me go forward a little more wiser and informed as to what to do next

I cannot understand why my doctor doesn’t see what you all sort of see that I should have Thyroid looked into further - I will proceed with all your advice in the forefront of my mind to get the correct tests and then if an answer comes to light with my ranges I will go back to doc and request a scan etc

It’s difficult to keep going on and on with the doctor but I will one last time

Thanks everyone for all your efforts to enlighten me

I will get back when I have something to report

Lottyplum profile image
Lottyplum in reply to SeasideSusie

Just reading you're response.please could you explain your reasoning re the TSH and T4 in relation to Hashimtos ? Thank you.

SeasideSusie profile image
SeasideSusieRemembering in reply to Lottyplum

could you explain your reasoning re the TSH and T4 in relation to Hashimtos ?

Because with Hashi's you get false hyper episodes where TSH goes suppressed and FT4 and FT3 go over range.

Lottyplum profile image
Lottyplum in reply to SeasideSusie

thanks.

SlowDragon profile image
SlowDragonAdministrator

Are you diagnosed as hypothyroid and taking levothyroxine?

Always test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Assuming you are on levothyroxine

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 levels last tested

Scottii profile image
Scottii in reply to SlowDragon

Not been diagnosed - No medications

SlowDragon profile image
SlowDragonAdministrator in reply to Scottii

OK so would strongly suspect early stage Hashimoto’s (autoimmune HYPOthyroid disease )

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

Folate and B12 on low side

CRP (inflammation) is high

High inflammation results in high ferritin levels

You need full iron panel test for anaemia

High ferritin can be misleading

As you’re post menopause, higher ferritin levels are to be expected….but you still need full iron panel test as high ferritin can be masking low iron levels

You need actual result on vitamin D result

How much vitamin D are you currently taking

Have you had cholesterol levels tested

High cholesterol levels suggest hypothyroid

Low GFR suggests hypothyroid

Suggest you get full thyroid including thyroid antibodies tested

Via GP or privately

Request GP do ultrasound scan of thyroid

Could be hot nodule……a nodule that releases thyroid hormones regardless of low TSH

mayoclinic.org/diseases-con...

Full private thyroid testing including BOTH thyroid antibodies via GP or Private

all thyroid blood tests early morning, ideally just before 9am………This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Scottii profile image
Scottii in reply to SlowDragon

SlowDragon

I think that should be my name lol

Thank for the in-depth response - I do have high cholesterol - high BP and on meds for both

I will ask docs for a printout of results

My private tester Thriva said I should consult doctor on various things he said showed up and should consult my doctor in the next week but she never took serious notice of the results I tried to show her - she said needed to do is n testing for NHS - Which she did - but again said results were normal for my age - and I don’t agree - I’m not this feeble minded person - I have just been hitting a brick wall for years living with all the debilitating symptoms - my family always on at me to see the doctor when look tired, fatigued,brain fog, frozen extremities, hair fine and thin, overweight on one meal a day No takeaways Burgers Chips - nothing in excess - Just getting alone as best I can but back for one last throw of the dice to be normal - like I said before - 4 blood tests in the past months all supposedly normal results - hence I went for a private clinic - to no avail - no one’s looked at report ! But I will ask for a print of their last test - thank you for taking time out to reply

SlowDragon profile image
SlowDragonAdministrator in reply to Scottii

Did you not get thyroid antibodies tested via Thriva ?

greygoose profile image
greygoose

I take it they only test TSH and FT4, then? You cannot diagnose hyperthyroidism based on those to readings alone. You need to know what your FT3 is: that is the one you need tested, not rT3.

If your FT4 is above range, your rT3 is going to be high, that is a given. But, it is irrelevant because rT3 is inert, and the mechansim of high T4 converting to more rT3 than T3 is a safety precaution to stop you going hyper. That's all. But, of course, it does depend on the actual level of the FT4, and you haven't told us that. So, having high rT3 does not prove you are hypo - or anything else, come to that.

On the other hand, having low FT3 will prove you're hypo (to anybody that understands these things, which rules out most GPs!). So, I really think it's that that you are talking about, not rT3. Asking a GP to test rT3 would be like talking to him in a foreign language, he just wouldn't understand. Ask for FT3 and there's a slight possibility that you might actually get it. :)

RedApple profile image
RedAppleAdministrator

Scottii, 'Are they following an NHS mandate - Not to test for Reverse T3'

Reverse T3 is not a recognised diagnostic test for thyroid dysfunction anywhere as far as I know.

FT3 (Free T3) is the usual test, alongside TSH and FT4, and thyroid antibodies.

However, NHS testing labs in the UK only do FT3 under very specific circumstances. This is the case even if your NHS GP requests FT3 to be tested. The lab will ignore the request unless the specific criteria are evident. This would typically be when TSH is below reference range and FT4 above reference range.

It's good to bear in mind that symptoms of hypOthyroidism and hypERthyroidism can often cross over. They are not exclusive to one or the other. So what you think are hypOthyroid symtoms, may actually be because your FT4 is too high instead of too low.

If your FT3 has not been tested, you might wish to consider doing your own private testing. Details of private testing labs many here use are listed here thyroiduk.org/help-and-supp...

Scottii profile image
Scottii in reply to RedApple

Thanks for advice - the blood ranges I posted came from a private clinic - Dr not too interested - but did order her own tests for me - but came back normal for my age again - I watched a uTube video on what is reverse t3 - which is where I looked for information when doctor didn’t know what I was trying to say - And I read NHS stopped prescribing t3 down to costs soaring into billions - now the company has been fined it may be more ready available in the future - a private t3 test was costing hundreds of pounds as were the prescriptions - being a pensioner I couldn’t afford the upkeep of those costs monthly - but I will try again to speak to doctor and hope she’s more understanding - your comments have helped but I’m a bit brain dead now trying to get it all out - so signing off - hope you all have a good night

PurpleNails profile image
PurpleNailsAdministrator

How long have you had low TSH high / low FT4. 

Are there more results? or is it one test you’ve had? 

If with autoimmune hypo you’d expect that to last for weeks, sometimes months, and the levels might to fluctuate.

The nodules could be hyper functioning, neither an untra sound or FNA would detect function.

Usually doctors are very keen to treat low TSH with antithyroid.  Has that been suggested?   - Before that is considered you need thyroid antibodies - & FT3 - tested along with TSH & FT4. 1 results unless horrendously out or range it needs further investigation first.  

Sometimes nodules can cause long term elevated levels rather than very high levels such as what’s seen with Graves or temporary high levels like what you see with thyroiditis.  

I was certain I had hypothyroid symptoms,  & I also had a ultra sound & FNA.  Was still missed I kept being told my levels were ok.  Discovered years later my results were being missed or not processed.  

My TSH Undetectable, FT4 borderline high, FT3 approaching double the range but time diagnosed but they were abnormal many years before.

So you are assuming your FT3 must be low due to symptoms but you might find the FT3 id high too.  Without testing it’s all guess work. 

Why aren’t you doctors trying to establish the cause of you hyperthyroidism it that’s what you believe to have? 

Jazzw profile image
Jazzw

I think you may have muddled yourself and the doctor with mention of RT3.

On the face of it, you have what your doctors might call subclinical hyperthyroidism (subclinical over active thyroid). Your TSH is really low but your FT4 is pretty high. That’s unusual but it doesn’t immediately make me suspect hypothyroidism.

What would be most useful is to know your FT3 result. If that too is high in range then a diagnosis of subclinical hyperthyroidism is far more likely.

You’re probably fed up with paying for your own private tests but the cheapest, if you want to try one more time, is a test from Monitor My Health. They do a test which tests TSH, FT4 and FT3 for £29. monitormyhealth.org.uk/thyr...

Or when you can afford to do a Thriva test, be aware that you can get 15% off the cost—see our parent site here thyroiduk.org/help-and-supp... for details about discount codes

It sounds like you’ve read a lot about the difficulties of being prescribed T3 medication but it may not be relevant to you at all—it’s much more likely, looking at your results, that your FT3 will be high in range at this point.

I think for peace of mind you’re probably going to want to understand why you’re seeing the results you’re seeing. It could be that you have Hashimoto’s or autoimmune thyroid disease, which in the earlier stages can send you slightly overactive then increasingly under active as the disease slowly destroys the thyroid tissue over a longer period of time. To have a better idea about that you might want to think about testing thyroid antibody levels. Alternatively it could be the nodules.

You might find these pages here a good read: thyroiduk.org/if-you-are-un...

kreamtee profile image
kreamtee

Just a quick one as lots of good advice given, but worth talking to your doctor about the CRP (in addition to all the above) - as mentioned above it is a non specific marker of inflammation, so could relate to inflammation anywhere in body...

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