Frustrated!

[Vicm78]

Hi

As lots of you will know I have been posting on here regarding 'normal' TSH levels and low Free T4. I have now had two sets of blood results taken in Nov that demonstrate low Free T4 levels (0.1 below the ranges given).

After 2 days of chasing my endo who hadn't even looked at bloods I had taken with her (on the 27th Nov) she has looked at them and come back to me saying everything is 'normal'. I asked for my Free T4 level on this set of bloods. She told me that my Free T4 was 9.7 and the range starts at 7.5 so nothing there that indicates I need any medication regardless of the fact that my other two sets of results were 0.1 lower than the range.

I had my Medichecks bloods done on exactly the same day as endo bloods. Results:

Medichecks

Free T4 11.9 Range 12-22

Endo Bloods

Free T4 9.7 Range 7.5 plus

Why is it that on one set of bloods my results are low and the other are 'normal' according to endo when they were taken on the same day?

My GP Free T4 result taken a couple of weeks before was 7.8 Range - 7.9 - 16.

I'm totally confused now as the endo said none of my problems are thyroid related (even though I questioned why I had already had 2 tests that month which show Low Free T4 results).

It was only a phone conversation as they are refusing to give me the results on paper. She said to have cortisol tests done now - not sure what that will reveal. Any ideas?

I have my GP tomorrow and now worried that the endo has a set of results that will contradict all the others I've had and they will refuse to treat anything.

Sorry to keep asking so many questions but I feel totally baffled now!

[Vicm78]

Will be asking the GP to see my full set of results tomorrow at my appointment as the endo wasn't sharing much on the phone.

[Vicm78]

You mentioned central the other day when you posted thank you.

The endo gave me no idea of any of the other results and just said there isn't a thyroid issue at all. I questioned this and all she said was that she will now test my cortisol.

I've asked the private hospital for my results and they said it is against protocol to give me my results.

I'll ask the GP for them instead when I go tomorrow. TSH is always within the ranges given.

Medichecks did my Free T3 that was within the range but they couldn't do my T3 and are sending a repeat test to me.

Thanks again - you are always very helpful.

[Clutter in reply to Vicm78]

Vicm78,

The Data Protection Act entitles you to your test results and trumps the private hospital's protocols. If you can't get the results from your GP email the hospital with a subject access request for your results and ranges. ico.org.uk/for_the_public/t...

[Vicm78 in reply to Clutter]

Thank you for the link. I'll see what happens with GP tomorrow

[diogenes Remembering]

Its clear that you have had FT4 tests done with greatly differing methods. The one showing a lower limit of 7.5 is pretty questionable as to its validity. This might come from its design or it might be that the method used to get the healthy range was dodgy. I would rely on the Medichecks test which does have an acceptable lower and upper limit and range.

[Vicm78 in reply to diogenes]

Why would this be the case? I am so confused as to why there are so many different ranges for different areas/labs!

The 7.5 lower limit is the NHS test that the endo requested from my health authority.

[diogenes Remembering in reply to Vicm78]

Because there has been inadequate control of the quality (QC) of tests by the relevant authorities. There is a QC system across the UK, and to my knowledege it has been useless in pressing for proper calibration of tests. This problem is being addressed but, my goodness, it does take a long time.

[SlowDragon Administrator]

Have you also had vitamin D, folate ferritin and B12 tested as advised previously

i see your antibodies were negative

[Vicm78 in reply to SlowDragon]

Endo did Ferritin. When GP did folate, B12 and Vit D the only result that was low was my Vit D so I'm on tablets for that.

Yes Antibodies negative.

[SlowDragon Administrator in reply to Vicm78]

If you add the actual results and ranges then members can advise

Often too low, but in range.

How low was vitamin D? And how much are you prescribed. Very often dose is far too low (800iu) and never increases level

We frequently have people turn up here been on 800iu for 3-4 years and still deficient.

If level was very low you need loading dose

B12 range is typically 210-680

If result is 250 GP would say it's normal, but many people experience symptoms if below 500

Ferritin must be half way in range.

[Vicm78 in reply to SlowDragon]

Thank you. I was given a very high dose 20,000iu of Vit D daily for a week then one tablet per week.

I don't have actual figures for the rest and trusted my GP but will collect these at my appointment tomorrow.

[SlowDragon Administrator in reply to Vicm78]

I read your other post from today about it not going well

Did you manage to get vitamin D, B12, folate and ferritin results ?

If not get them from receptionist next week

You are legally entitled to copies of results and ranges

[Vicm78]

Yes Medichecks gave me all the results but their doctor summary said I was unlikely to have a thyroid problem even though the Free T4 was * asterisked as it was lower than their starting range!

Medichecks:

TSH 2.31 (0.27-4.2)

Free T3 4.5 (3.1-6.8)

Free T4 11.9 (12.0-22.0) *

Total Thyroxine 71 (59-154)

GP results:

TSH 1.41 (0.3-5.0)

Free T4 7.8 (7.9-16.0)

Endo pretty useless really.

[Vicm78]

All very new to me but I am learning. I guess I've always thought GPs judgement should be trusted so if they say everything is 'normal' I wouldn't normally question it. I can see that with thyroid it's a slightly different story!

[Vicm78]

I'm seeing my GP tomorrow evening and will be going for option 1 - trying to convince them to treat me! I'll let you know the outcome.