Sussex hospitals no longer giving fT4 result on thyroid function tests

[Myalikki]

Hello,

Writing this post in case it helps prepare others rather than for advice (but feel free to advise if you wish!).

I had a blood test last Friday not because of hypothyroidism but the test included "thyroid function". My results came back with just TSH being reported, no fT4 as I have been used to. I had a telephone appointment with the Advanced Practitioner (he's a paramedic not a doctor) at my surgery today and I queried the lack of fT4 result. He advised me this is now the new normal in our area (!) but as always (I've had a few phone calls with him) he was fully prepared to listen to me and respond.

I said I test TSH, fT4 and fT3 privately sometimes to monitor my condiditon and this TSH result concerned me because it is the same as when I was on 75mcg (I'm currently on 100mcg and do not feel well at all). I explained that in December 2023, I tested privately and TSH was 0.7 and now it is 1.65 [0.27 - 4.2]. I told him I take advice from Thyroid UK and I am aware that while my result is completely in range for most patients, it is not for someone who is on thyroid replacement (according to Thyroid UK advice). I explained my previous private testing showed while my fT4 was good, my fT3 was on the floor and I worry I need a trial of T3 - this is not what what I want as it's a total hassel to deal with but it looks increasingly likely I need it.

I asked to retest thyroid specifically requesting fT4 and fT3 be included and he agreed, but the computer said "no" to fT3 no matter what he tried! He said he'd talk to my GP and call me back, which he did within 30 minutes. He said new protocol means testing fT3 is not an option, but the GP agrees with going based on symptoms so he has increased my T4 dose to 125 mcg.

So... I have a T4 dose increase I didn't expect and I am so hopeful (as always) it will make a difference and I will feel magically well. But I doubt it. Getting a trial of T3 seems harder than ever but I haven't tried very hard yet. Mostly, I just want anyone who is in the area of Sussex Hospitals to know your "thyroid function" NHS test will now only be TSH unless you specifically request fT4 (and it seems fT3 is out of bounds now).

[HealthStarDust]

What I find even more stranger, I believe according to guidelines (I forget which specifically now) that when TSH is under range, the lab shoifk automatically test FT4 and FT3. In my area they don’t!

[SlowDragon Administrator in reply to HealthStarDust]

I found the same issue …...they still don’t test Ft4 or Ft3 when TSH is below range

[HealthStarDust in reply to SlowDragon]

Odd isn’t it?

[Sparklingsunshine in reply to HealthStarDust]

Its very weird, the NHS in my area, East Midlands has always tested all 3, there was one occasion when only TSH and FT4 were tested but I've always been impressed that they do all 3. I last had NHS test in December so who knows what they do now?

[HealthStarDust in reply to Sparklingsunshine]

Right, I guess I’ll move there. It’s good they test all 3 as that at least should mean your more likely to speak to professionals who can interpret the whole panel of results.

[Sparklingsunshine in reply to HealthStarDust]

Well that's the theory lol, but as usual they are fixated on TSH. They only notice the other two if they are abnormal.

[elwins in reply to Sparklingsunshine]

I live in East Midlands and they only test TSH in my area.

[Sparklingsunshine in reply to elwins]

Different CCG probably.

[elwins in reply to Sparklingsunshine]

Thanks I think you could be right.

[Ellie-Louise]

Thank you for that. I have noticed that blood testing and also supply of Levo is much reduced these days annoyingly!

[Agitator23]

This also happened to me in Surrey in March. The GP requested full panel TFT but only T4 came back. The lab had unilaterally decided not to do the rest! TSH alone is pointless for me as I have suspected central hypothyroidism. So a total waste of time - and money for NHS.

A note on the results said the GP would need to get in touch within two weeks to use the blood sample if they wanted the full requested panel. That never happened...

I'm in the process of following this up.

[TopBiscuit]

It's the new normal in Wiltshire too. Luckily for me I'm under an endo as I take T3 and it's only because she has required a full TSH, T4, T3 that I get those tested. The last time I had my blood test the phlebotomist couldn't find the order on my file so she said that the lab would just do them. The lab didn't. I had to go back and tell them to look for the last letter from my endo and then redo the test, which did the trick.

[Blissful]

Currently (and for some time) the country and all its taxpayer services have/are going to hell. It would be lovely to believe that things will get better if only X,Y,Z was done, but cold reality might inform us that we are a bit deluded.

You are a young woman who has already been struggling for some years. I hope the unexpected increase in T4 will resolve things for you - certainly give it your best shot but please don't delay getting T3 if you realise that the increase isn't actually helping.

Do you take amitriptyline?

[JumpJiving]

Myalikki It may depend on who requests the test. I had an appointment with a Sussex hospital endocrinologist in March. The tests done included TSH, FT4 and thyroid peroxidase antibodies, so in March at least they were still doing FT4. I am not sure I have ever had the NHS test FT3, I think I have only had FT3 done privately.

Unfortunately, I would not recommend anybody to get a condition that involves endocrinology (other than perhaps diabetes, which I don't have thankfully) in my particular area, unless willing to travel.

[tattybogle]

As an example of how testing TSH on it's own tells the GP bugger-all about what is going on... see some of my actual results , arranged from highest fT4 at top of list, to lowest fT4 at bottom;

note how the TSH for the highest fT4 level , is virtually the same as the TSH level for the lowest fT4 level.

TSH...................fT4

0.09................22.7 [7.9-14] 242%

0.04................20.5 [7.9-14] 206%

0.5..................19.0 [7.9-14] 181%

1.94...............16.6 [7.9-14] 142%

<0.05.............21.4 [8-18] 134%

2.65...............15.7 [7.9-14] 128%

0.04...............14.7 [7.9-14] 111%.............. fT3.......54%

1.63...............22.2 [12-22] 101%.............. fT3.......24%

2.9..................22.1 [12-22] 101%

<0.05............18.8 [8-18] 108%............ fT3........63%

0.05...............16.5 [8-18] 85%................ fT3.......36%

7.89...............14.6 [8-18] 66%................. fT3.......32%

0.06...............13.9 [8-18] 59%................. fT3.......41%

I have an uncomplicated autoimmune hypothyroidism diagnosis.

I'm only taking levo.

All are NHS (GP) results.

[Sparklingsunshine in reply to tattybogle]

They are obsessed with TSH, my area, at least back in December still tests all 3, how long that will remain the case is anyone's guess. However unless the frees are either drastically over or under the range the GP just shrugs them off.

I've often had my frees scraping along the bottom of the range and that is fine, apparently. So I'm not sure knowing what our frees are is in anyone's interest, except our own and other forum members. Medics dont seem bothered.

[serenfach]

Write to the lab and strongly suggest they follow NICE guidelines (if TSH is out of range, test T4) or there could be legal implications. Also write to your MP and question why they are not following NICE guidelines when they are taking Government (your) money.

Even my Endo said he could not ask for T3 to be tested. I pointed out they think T3 is a dangerous drug, so why not test? I sent him a long list of research showing T3 is the most important test and he wrote back with a slight change of heart. He is high up in the Endo world, so maybe he took the research on board.... I wont hold my breath!

[mumellis]

Ha, I have just been informed of same here in Kent! Told if you are on Thyroxine all you need to know is TSH!!! I was so gobsmacked I couldn't reply!