Stumped by blood results & change to NHS FT3 ra... - Thyroid UK

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Stumped by blood results & change to NHS FT3 range change - suggestions would be most welcome

BreifneKing profile image
39 Replies

After spending the best part of almost two years on NDT and getting more and more ill I decided 4 months ago to reduce my NDT and introduce more Levo into the mix every two months. Gradually my exhaustion has started to lift but brain fog / cognitive melt down hasn't changed a great deal although the sharp pains I was getting over my right eye whenever I coughed, laughed or sneezed are less frequent.

The latest results have stumped me as the NHS have changed the FT3 range so I am now over range, and my FT4 appears to have dropped despite the increase in T4 (although I appreciate it is still roughly midway through range).

Latest:

NHS - 150mcg Levo & 1.0 Grains Erfa (total 8mcg T3 & 186mcg T4)

FT3 5.6 2.9 - 4.9

FT4 14.7 9.0 - 19.0

TSH 0.01 0.4 - 4.9

2 months ago - Medichecks - 137.5mcg Levo & 1.0 Grains Erfa (total 8mcg T3 & 173.5mcg T4)

FT3 5.11 3.1 - 6.8

FT4 17.5 12 - 22.0

TSH 0.031 0.27 - 4.2

4 months ago - NHS - 87.5mcg Levo & 2.0 Grains Erfa (total 16mcg T3 & 159.5mcg T4)

FT3 5.20 2.6 - 5.7

FT4 11.7 9.0 - 19.0

TSH 0.03 0.4 - 4.9

What changes do I need I make with my NDT & T4 to get optimal FT4 and FT3??

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BreifneKing profile image
BreifneKing
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39 Replies
SlowDragon profile image
SlowDragonAdministrator

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

What vitamin supplements are you currently taking

As you have Hashimoto’s are you on strictly gluten free diet and/or dairy free diet?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, or NDT make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Ft4 perhaps looks low.

BreifneKing profile image
BreifneKing in reply to SlowDragon

Tested yesterday:

Vit D - 109.0 nmol/L > 49.9

Folate - 14.4 ug/L 3.1 - 20.5

B12 - 537 ng/L 187 - 883

I take 4000iu vitamin D, 100ug K2 and 1296mg betaine with pepsin.

SlowDragon profile image
SlowDragonAdministrator in reply to BreifneKing

Vitamins look pretty good

How do you feel?

Difficult to say if Ft4 is too low as on NDT and that seems to often result in low Ft4 even if adding extra

And as you say ...Ft3 range change hasn’t done you any favours

SeasideSusie profile image
SeasideSusieRemembering

BreifneKing

The latest results have stumped me as the NHS have changed the FT3 range so I am now over range

Your FT3 result isn't over range because the NHS has changed the range. Your result is relevant to the range the lab uses at the time, not any other range at any other time. So your current FT3 result will be correct and it is over range.

When did you take your last dose of NDT and your last dose of Levo before your latest test?

Do you take your thyroid meds on an empty stomach with water only and water only for one hour either side, on their own, 2 hours away from any other medication/supplements?

Do you have Hashi's?

When you changed your doses from 87.5mcg Levo & 2.0 Grains Erfa to 137.5mcg Levo & 1.0 Grains Erfa, did you change the dose of both Levo and Erfa at the same time?

tattybogle profile image
tattybogle in reply to SeasideSusie

Just for info Susie, re .new narrower nhs range, i have had comments from diogenes recently about Abbott machines/ranges.... he's not impressed with the narrowness/lowness. My local range FT4 range changed in 2017 from 8-18 to 7.9-14 ,and since then i have been very much over, in a way that doesn't correspond to long history of previous dose/levels. I do accept that i am 'over' obviously, but have been questioning the scale if you see what i mean.

SeasideSusie profile image
SeasideSusieRemembering in reply to tattybogle

My NHS ranges have also changed in recent years, sometime between 2014 and 2017 (I went 3 years without NHS tests).

FT4 was 11.8-24.6 and is now 7-17

FT3 was 2.1-6 and is now 3.5-6.5

No idea what the machines were/are, print out doesn't mention this. I just work out the percentages through range and also compare them to when I have private tests done with different ranges. I know where the percentages need to be for me to feel optimally medicated thyroid-wise and I find no problem. However, I have never seen an FT3 so narrow before.

tattybogle profile image
tattybogle in reply to SeasideSusie

I just thought i'd mention it, as i have found 2 other in my area ,on here recently ,who now have very 'over' FT4's compared to previous dose /expectations. which is why i had picked the brains of 'him in the barrel'. Hoping this observation isn't muddying the waters for anyone who is comparing results when using different ranges for which i agree the % through range method is correct. I am only pointing it out for those with previous history who notice unexpected change which coincides with a new much narrower range.

BreifneKing profile image
BreifneKing in reply to tattybogle

Just to confirm 2.9 - 4.9 is the new Abbott reference range for FT3 and it doesn't correspond in any way to my previous doses or levels.

greygoose profile image
greygoose in reply to tattybogle

Why isn't he impressed?

tattybogle profile image
tattybogle in reply to greygoose

See his reply's to 'Reference Ranges' by Ginny52 ,21 days ago.( sorry cant do the linkything ! )

greygoose profile image
greygoose in reply to tattybogle

Yes, I see. Thank you for that. I'm always suspicious of ranges, anyway - and the way some doctors etc. insist you have to stick rigidly within them. Although, strangely enough, it does depend on the test. They're only rigid when it comes to reducing dose of thyroid hormone, funnily enough. Other abnormalities get away scot free!

humanbean profile image
humanbean in reply to tattybogle

See his reply's to 'Reference Ranges' by Ginny52 ,21 days ago.( sorry cant do the linkything ! )

healthunlocked.com/thyroidu...

tattybogle profile image
tattybogle in reply to humanbean

thank-u hb

BreifneKing profile image
BreifneKing in reply to SeasideSusie

I appreciate that it is relevant to the range the lab uses but when you consider the FT3 was just over mid-way through the range 2 months ago and the only thing that has changed since then is an increase in T4 of 12.5mcg, how on earth can it now be 33% above the top of range? Going back through previous results it wasn't as high when I was taking 4 grains of Armour (152mcg T4 & 36mcg T3) .

I changed levo and Erfa at same time to make up for shortfall in T4 when reducing Erfa, but have been taking a constant 1 grain of Erfa for 4 months.

Last dose of all meds taken 24 hours before testing, 2 hours before food, . . . . . . etc.

Tests done on empty stomach, first thing in morning.

Yes I have Hashi's.

Also have been pretty active over the last week, which is a big change, so not sure if that has had an impact - but would have expected FT3 to be lower as a result.

SeasideSusie profile image
SeasideSusieRemembering in reply to BreifneKing

the only thing that has changed since then is an increase in T4 of 12.5mcg, how on earth can it now be 33% above the top of range?

Yes I have Hashi's.

Your Hashi's could have some bearing as levels will fluctuate when Hashi's is present.

I changed levo and Erfa at same time to make up for shortfall in T4 when reducing Erfa

We should only change one thing at a time so that we an see what difference that has made, if we change both at the same time we wont know which has caused the difference.

Last dose of all meds taken 24 hours before testing, 2 hours before food, . . . . . . etc.

Last dose of NDT should be 8-12 hours before test. This is because it contains T3 which has a shorter half life than T3 and as FT3 is the most important result we need to see an accurate measure of this. Taking NDT 24 hours before a test will give a false low FT3 result.

BreifneKing profile image
BreifneKing in reply to SeasideSusie

The only difference between my medication 2 months ago and my medication now is the addition of 12.5mcg of T4 so only one thing was changed which is why the results don't make sense as 12.5mcg is unlikely to cause such an increase in FT3.

Interestingly I had to have more bloods done yesterday, so 24 hours after the results in my original post, but my GP made a mistake and put FT3 and FT4 on the form. This time I had taken my NDT and Levo the night before, 10 hours before the

NHS test - 150mcg Levo & 1.0 Grains Erfa (total 8mcg T3 & 186mcg T4)

150mcg Levo & 1.0 Grains Erfa taken night before test:

FT3 5.9 2.9 - 4.9

FT4 15.1 9.0 - 19.0

150mcg Levo & 1.0 Grains Erfa taken 24 hours beforetest :

FT3 5.6 2.9 - 4.9

FT4 14.7 9.0 - 19.0

In fairness the extra 14 hours doesn't seem to have made a huge amount of difference given the natural fluctuations in blood levels??

SeasideSusie profile image
SeasideSusieRemembering in reply to BreifneKing

In fairness the extra 14 hours doesn't seem to have made a huge amount of difference given the natural fluctuations in blood levels??

No, it doesn't and I can't explain it. It certainly makes a big difference to my results if I vary from the advised time gap.

tattybogle profile image
tattybogle

Sorry if this suspicion of mine over the new range only makes your search for an answer harder rather than easier. And the 'hashi' element of fluctuation is of course still a consideration.

I have been looking out for other's results with these narrower ranges. It would be interesting to see two blood tests taken with same blood draw sent off , one with this Abbot test range ,and one with a wider one to compare. Just wanted to let you know you are not the only one to raise an eyebrow at the results. I didn't know what the Abbott FT3 range was , but i'm not surprised your test turns out to be done on that, after reading the reply i had from 'diogenes'.

BreifneKing profile image
BreifneKing in reply to tattybogle

I very much doubt my FT3 has actually gone from being mid-way through range to 33% over range due to a 12.5mcg increase in T4 and fully believe the range has been narrowed to limit the arguments from patients requesting T3 due to their FT3 level not being 'optimal'.

The suggestion that it fluctuates that much due to Hashi's is not borne out by any of my previous blood tests so after due consideration I doubt it is the cause.

Would be a good idea for someone to get a medichecks blood sample taken at the same time as a NHS sample just to compare and contrast the results.

tattybogle profile image
tattybogle in reply to BreifneKing

you sound as cynical as me ! BreifneKing. I am waiting for someone to come along with just such a comparison, or for my Covid 'pruned' money tree to regrow ! whichever comes fist.

NWA6 profile image
NWA6

Those ranges wouldn’t work for me that’s for sure!! Gives much more power to medical staff to say ‘you’re fine’ ‘you’re in range ‘ grrrrr!!

SeasideSusie profile image
SeasideSusieRemembering

That's right Hidden , there is no common range. The range is based on local population and the different machines at different labs used for testing. So although some may be the same, there can be quite a few variations especially with FT4. With FT3 there doesn't seem to be quite as much variation and the width of the range tends to be somewhere around 3 to 4 (4 at the most), I've never before seen such a narrow range with just a width of 2 as in the OP's new NHS range of 2-9-4.9

AmandaK profile image
AmandaK

I hope you don't mind me asking, but how did you manage to get FT3 testing on the NHS as it's extremely rare.

The labs of the hospital where I'm a patient (under three different departments) has a blanket ban on FT3 testing as it considers it too esoteric with no clinical relevance and only of interest to researchers. I know this as this is the response I received when I asked why they didn't test FT3 when the consultant requested it.

And this is a major teaching hospital in one of the largest population centres in the UK.

It would be interesting to know why the labs of the hospital where your tests are done are willing to carry out FT3 testing when the labs of mine are being so archaic in their thinking and, in effect, suppressing useful information to patients.

Lora7again profile image
Lora7again in reply to AmandaK

I never get my T4 or T3 tested if the labs see my TSH is in range because that is their policy. Even when I was admitted to hospital last year with a thyroid storm the labs just tested the TSH and nothing else. They were more interested in testing my heart even though my symptoms were being caused by my thyroid.

AmandaK profile image
AmandaK in reply to Lora7again

Goodness, that's frustrating. My query was more to do with the fact that the labs do actually test for FT3 when the labs at my hospital point blank refuse to do any FT3 testing at all. I don't understand why labs should be so contrary in their attitudes and practices.

Lora7again profile image
Lora7again in reply to AmandaK

When I first became ill 10 years ago they did test both the T4 and T3 but over the years this has now changed. So I always do my own private testing now and use Medichecks because they do a more detailed test. I do have my high antibodies written on my medical records because I insisted my GP put them on there even though they think antibodies mean nothing.

tattybogle profile image
tattybogle in reply to AmandaK

AmandaK, I have had 5 FT3's on NHS, only found out when got records.

There is something at labs called 'reflex protocol' ? ie. if TSH test below range, then FT4 done , if FT4 over range then FT3 done, but i think this may be happening less now.

In my case i suspect the senior Practice Gp ordered mine, as they sometimes (but not always) pop up when it is him that is recorded as doing 'medication review' on my notes, so i think he has his beady eye on me...... we have had heated discussions recently about reducing my Levo.

I read many times on here that Gp cannot get lab to test FT3 , but my observation of my own notes suggests to me that they can if they really want to.

Wouldn't be at all surprised if it's getting harder for them too though :(

I'm pretty sure neither of my 2 Gps are Pro T3! the subject has never come up!

I think they have been checking it because they are worried i'm overtreated, which suggests they DO know its important ! Despite the fact they haven't ever suggested adding some to try and improve my life. Ft3 tests/history towards end of my profile if it helps .

AmandaK profile image
AmandaK in reply to tattybogle

Thank you - usually the labs *will* do the tests if a consultant requests them (as happened in my case,) but they didn't do the FT3 because of their policy of not carrying them out - for the reasons I state above. So it looks asa though there isn't even a reflex protocol in place, as you describe.

I haven't stood a chance generally as my TSH is always in range, despite being symptomatic however, I have now had a breakthrough as a doctor who is an advisor to TUK has diagnosed me as hypo given that the latest TSH results are over 3 and the FT4 is at the lower end of range (tests done privately). So my question is pretty academic, but it does intrigue me that there doesn't seem to be a standardisation of protocol/attitudes.

FancyPants54 profile image
FancyPants54 in reply to AmandaK

I know. It makes no sense. My GP will test my T3 when I ask. It's never been refused. One time I forgot to specify that I wanted the FT3 and FT4 testing and not just the TSH so when I went to the nurse for the blood draw I asked if she could add them on and she did.

It seems to be a postcode lottery.

BreifneKing profile image
BreifneKing in reply to AmandaK

I just ask my GP to test FT3 along with FT4 and TSH and it's done without any fuss.

Where in the country are you based?

FancyPants54 profile image
FancyPants54 in reply to BreifneKing

Exactly the same as me. GP does it. Even nurse seems able to do it.

AmandaK profile image
AmandaK

I'm in Coventry, though a patient in the hospital of a nearby city (she says, trying to be non-committal and intentionally obscure!). And you?

BreifneKing profile image
BreifneKing in reply to AmandaK

I see an endo at Coventry and have previously had no issues getting FT3 done there but I live near Birmingham so most of my bloods are done at one of the hospitals in the University Hospitals Birmingham Trust, and FT3 testing isn't a problem.

AmandaK profile image
AmandaK

Well, I'm astonished! Maybe they have changed their systems since I received the email from the consultant giving me their rationale (in around 2014). Frustratingly I seem to have deleted the email or I could have quoted it verbatim.

Or... maybe someone was telling porky pies somewhere along the way or fobbing me off. Now v annoyed!

BreifneKing profile image
BreifneKing in reply to AmandaK

I am afraid to say it all depends on the GP or consultant. Most are counting the pennies but a dwindling few are trying to make their patients well, regardless of cost.

tattybogle profile image
tattybogle in reply to BreifneKing

On the subject of cost... someone (cant remember who) on here did a freedom of information request to NHS re. the price of a FT3 test . It was in the region of £1 !

BreifneKing profile image
BreifneKing in reply to tattybogle

Yes, but the consequences of a low FT3 result may be a patient demanding a prescription for T3 and if that can be avoided by refusing to test FT3 in the first place . . .

tattybogle profile image
tattybogle in reply to BreifneKing

Exactly....... even though there is absolutely no need for T3 to be particularly expensive ........... but that's a subject for a whole different 'rant'!

BreifneKing profile image
BreifneKing

Although there have been a number of responses my original question appears to have been overlooked i.e. What changes do I need to make with my NDT & T4 to get optimal FT4 and FT3??

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