Conflicting results from Endo and Medichecks.... confused, thoughts appreciated

[jamjar67]

I hope you can see my chart below, the green is the blood results from the hospital and the others are Medichecks. My dose for the 3 most recent tests was 100mcg - I have just had it increased to 100/125 alternate days, but the Endo said my results look perfect and asked me what I’d like to do, she didn’t make me another appt and told me to ring for results next time and only make an appointment if necessary. She said her and the other consultant (off the thyroid uk list) have never come across my symptoms 🤔.

I literally took my Medichecks blood test to the hospital and asked her to do it whilst doing my hospital test.

All done about 9am empty stomach and took levo straight after, been gf since Oct 18 when diagnosed.

My CRP is high which is a 1st so don’t understand that, I haven’t taken B12 sinc August last year as I took a mega dose.

There was no Vit D on this Medichecks test.

[SlowDragon Administrator]

Yes interesting.....quite different % through range on both Ft4 and Ft3 between the two tests

But both tests show levels are too low

Most people on levothyroxine need Ft3 at least over 50% through range

[jamjar67 in reply to SlowDragon]

Yes, I was hopeful with the previous hospital test as that showed I was getting there and now for it to drop again, I don’t understand why..., my vits are improving, also I’m increasing my T4 but it’s showing less.... anyway I guess I’ll have to wait and see what the next test shows.

The Endo I saw this time mentioned T3 and that they are not allowed to prescribe because of the CCG and that my results wouldn’t warrant it... but she also mentioned about people buying it abroad.

Also I had my Oestrogen checked, which she said was very high she seemed surprised at that..... I had a genes test done and am homozygous for the COMT gene which apparently means I don’t get rid of Oestrogen easily..., so I guess that fits.

[SlowDragon Administrator in reply to jamjar67]

If an NHS endocrinologist says you have clinical need of being prescribed T3 they can and should prescribe

Which CCG area are you in.

Helpful website for seeing prescription numbers...can search by CCG

openprescribing.net/analyse...

Some areas are worse than others...in effect a postcode lottery, especially if endocrinologist is not prepared to risk upsetting CCG by prescribing

Guidelines are quite clear (but being wilfully misinterpreted) Guidelines say ........”Liothyronine should not routinely be prescribed” ........ CCG’s are ignoring that extremely important word ....”routinely”

About 10-20% of patients need the addition of T3 alongside levothyroxine

But you may not need it ...if levothyroxine is increased high enough ...though it looks you might need it

Have you had DIO2 gene test too ?

[jamjar67 in reply to SlowDragon]

Yes I’m Heterozygous for DIO1 & DIO2 - thing is when my dose was initially put up to 100mcg my 1st hospital blood looked quite good and like I’m converting well and tbh I did have a big improvement to my weird head issue and other symptoms although I still felt not quite right, so this follow up test was disappointing... but who knows maybe this dose increase will get me back up there 🤞

[SlowDragon Administrator in reply to jamjar67]

As you are heterozygous DiO2 you will almost certainly need small doses of T3 alongside levothyroxine

Will pm you

[jamjar67 in reply to SlowDragon]

Thank you

[janeroar]

It’s concerning the blood tests could be so out. Is it worth trying to repeat them in a couple of months after trying an increase. Are you supplementing selenium etc as well as all other vitamins advised here? Perhaps raise this question with medichecks and ask for a free retest?

[jamjar67 in reply to janeroar]

That’s a good idea, I’ll give them a ring on Monday and see what they say. I will repeat it again on my next test to check again - don’t know which test to trust!

[MichelleHarris]

Ive also posted huge discrepancy between NHS and Medichecks results last two times and as I’m just a year in I find it very confusing. NHS said hypo and Medichecks said overmedicated x

[jamjar67 in reply to MichelleHarris]

Did you contact Medichecks and raise the discrepancy?

[MichelleHarris in reply to jamjar67]

I posted on here as new and was confused x

[MichelleHarris in reply to MichelleHarris]

My GP wouldnt accept those results from Medichecks as I was still being titrated up and still poorly. Also to make it worse I hadnt taken meds befire Medichecks blood drawn but before NHS one. Now I would derinitely report as I understand more and twice is really bad! x

[jamjar67]

Well the nurse at the hospital did both bloods at exactly the same time for both my Medichecks and my hospital test, I didn’t take my levo and stopped all vits for a week prior - so my conditions were exactly the same! It’s annoying as I’ve spent a fortune on Medichecks tests, they can’t both be right but neither lab will say theirs is wrong -

My understanding of this is my hospital result says I’m converting well but undermedicated and my Medichecks says I’m converting poorly 🤔

[Lovecake]

If you feel you need an increase in medication, why don’t you try it and see if you feel better?

If all it does is make your FT4 really high and not improve your FT3 much and you don’t feel much better, then maybe you do need the added T3?

I tried to stick with just thyroxine, my results said I should have been fine but I wasn’t. If I had a busy day (and that’s not a “normal” person busy) then it took me 2-4 days to recover. Adding a small amount of T3 has helped a lot. But I know it’s not always the answer. (I see a private endo)

I might be talking rubbish, but I find anything is worth a try these days.

Good luck 🤗

[jamjar67 in reply to Lovecake]

Thanks... I will go as far as I can with levo and if no joy I’ll try and ask the NHS for a trial of T3, if not will have to self medicate and if I do and it works I will be writing to the Endo - feeling frustrated due to lots of years feeling rubbish being undiagnosed and being told once I am diagnosed that I’m fine all because of ranges which are clearly not sufficient to go by 🥺

[Lovecake in reply to jamjar67]

Many of us in the same boat I’m afraid. But with help and advice I hope you will gradually feel a positive improvement. 🤗

[jamjar67 in reply to Lovecake]

I know..., tbh I’ve tried to keep upbeat but I felt a bit dismissed at my last appt, I was hopeful now a bit disillusioned with it all.... don’t know what I’d do without this site and I really am grateful for all input 😊

[Lovecake in reply to jamjar67]

Me too. Nice to be advised and helped in a way we can understand and not be almost ignored, or told you’re ok and obviously making it all up, and your TSH is in range and the other few tests, so you must be fine really........and that’s just the receptionist!

I half jest about the receptionist, but truly hope you feel better at some point very soon. 🤗

[jamjar67 in reply to Lovecake]

Ha ha, that cheered me up 😂🤗

[Lovecake in reply to jamjar67]

I have a daft sense of humour. But I have been told my results are fine by a receptionist before now. 🤨

Thankfully I have patient access online now. So can talk to myself. 🤪