Help with test results please.

[Barbie11]

I had RAI in July 2017 and I have been not feeling great on 100mcg of Levothyroxine even though GP/Endo say this is the right dose for me. The endo agreed to trial t3 for 6months to see if I felt better, unfortunately the GP refused and endo said she is no longer able to prescribe it by managers etc. but understood if I wanted to trial it myself. I have some Timorel 25mcg and I felt much better slowly increasing from 12.5mcg to 25mcg and reducing Levo to 50mcg daily. I ordered a Thyroid check Ultravit test from Medichecks (in the 3days before I stopped the T3 and resumed 100mcg Levo). Here are the results-

TSH 1.12 mlU/L range 0.27 -4.20,

Free Thyroxine 7.100 pmol/L range 12.00 - 22.00

Free T3 2.58 pmol/L range 3.10 -6.80

Thyroglobulin Antibody <10 IU/mL range 0.00 -115.00

Thyroid Peroxidase Antibodies 376 IU/mL range 0.00 - 34.00

Active B12 84.800 pmol/L range 25.10 - 165.00

Folate (Serum) 5.1 ug/L range 2.91 - 50.00

25 OH Vitamin D 108 nmol/L range 50.00 -200.00

Any help to understand much appreciated as next Endo appointment not until end of October.

[greygoose]

I ordered a Thyroid check Ultravit test from Medichecks (in the 3days before I stopped the T3 and resumed 100mcg Levo). Here are the results-

Why? Now those labs are useless. It was too soon to see any effect from the increase in levo. But long enough for the T3 to almost completely leave your system. All those labs show is that you don't convert very well and 50 mcg levo is not enough for you. But, you already knew all that.

Although they do show that you have Hashi's and that your B12 and folate are a bit on the low side.

[SlowDragon Administrator]

If your endocrinologist is an NHS endo and they say you have clinical need they should prescribe via the hospital for 3 month trial.

Assuming trial is successful and you benefit then the GP MUST continue care and cost of prescribing

british-thyroid-association...

Clear legal outline

healthunlocked.com/thyroidu...

theyworkforyou.com/search/?...

Keep up a huge fuss. Contact your CCG, patients association, your MP etc etc

Any thyroid tests must only be after 6-8 weeks on constant dose of Levo/T3

Your TPO antibodies are high so you have Hashimoto's

Did you know?

You have missed off ferritin result

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If also on T3, make sure to take last dose 12 hours prior to test

Not clear .....Is this how you did the test?

[pennyannie]

Hello Barbie 11

Your next endo appointment is quite soon ( in NHS terms ) just 5 / 6 weeks away.

I presume your surgery will do TSH + T4 and T3 bloods prior to appointment, and it makes sense to stay on whatever dose you are currently on.

If you have this blood test in good time, post the results back on here, with the dose level you are on, and I am sure you will receive some support and advice to take with you to the endo appointment.

Professor Toft's recent article - Thyroid Hormone Replacement - a counterblast to guidelines - is worth reading - even just for your own knowledge.

The current T3 debacle isn't helping anyone receive the correct treatment, as sadly,

you have already found this out and have started supplementing T3 yourself.

Sadly your private blood test isn't relevant as explained on previous posts, at least you'll

know now, for next time.

Take care

[Barbie11 in reply to pennyannie]

Thanks for your reply. Unfortunately the gp surgery only test for tsh sometimes but not always with t4 but never for ft3. I just wanted to see if I was short of anything or not converting properly and this could be the reason why levothyroxine was making me feel so awful. I didn't want to include t3 in the mix for the test in case that gave a false reading. Ah well never mind I will know better next time.

[pennyannie]

Yes, I understand your thinking, sadly the timing was a bit out.

Anyway, in my experience when my blood test was arranged for the endo appointment

a T3 and T4 were undertaken as well as the TSH.

It might be worth asking the question when you have the bloods drawn.

The results generally are back within a day, so you might get some support from here on how to best approach the endo appointment.

You have found through self medicating that T3 helps you - your endo suggested a trial :

It seems this decision was withdrawn, why ?

Obviously not on medical grounds because you have seen a difference in your well being through having T3.

Graves is an anxiety and stress related disease. This treatment, or lack of, only tends to

exasperate this situation.

It's unfortunate but self medication is not a choice, but a reality in the current climate.

[Barbie11]

The endo was willing to trial t3 because of ongoing symptoms and weight gain on t4 only even though I was in range. But GP wouldn't and said endo would have prescribe. Then came the decision health managers wouldn't allow endo to either but she will advise hence the appointment. She was sympathetic and has said this might change in the future. This is why I paid for Medichecks tests to see if there was a problem converting or something. I think I have messed it up for myself. Although now I know I have Hashimotos.

I used to have graves disease and was on block and replace which didn't work hence the RAI. I was advised by the endo if I took t3 to only take 12.5mcg and reduce levothyroxine to 75mcg. Didn't feel a lot of difference so increased to 25 mcg t3 and thought I had better reduce levothyroxine to 50mcg. I did feel some improvement which I will tell her and see what she can advise me.

The disturbing thing is the gp didn't know anything about t3 in any form she said she only learnt at medical school about t4 for treating thyroid problems. It doesn't bode well does it?

Many thanks for replying.