Positive appointment at the endocrinologist...although I think it helps to be informed so thank you to you guys

[Eimear78]

Hi folks

I went to see Dr Tof--c and he asked me about my blood tests and symptoms. He started down the track of 'it could be something else because your bloods are in the normal range'. I then spoke to him about Dr Toft's reports about increasing levo dosage or dual medicating with liothyronine. our local ccg won't allow the precription of liothyronine so he's going to increase the dosage and see how I get on and if I am still exhibiting symptoms he will the discuss further private referrals for me including to a colleague who has Chronic Fatigue clinics. He wants to focus on the thyroid and medication first. Up to 75mcg. See how I go and get some more bloods done in 8 weeks.

I think I would have walked away empty handed if I hadn't been on her and done my research. Thank you everyone x

[Blue_Bee]

Good on you Eimear78, power to you!

[Eimear78 in reply to Blue_Bee]

Thank you!!!!

[SlowDragon Administrator]

Which CCG?

They are all going to have to change policy on T3 and allow it eventually

[Kipsy in reply to SlowDragon]

Why is that SlowDragon ? It sounds really hopeful and positive which would be lovely....

[SlowDragon Administrator in reply to Kipsy]

Some already acknowledge if NHS endo says you have clinical need, eg Oxfordshire

Legally they all should. As confirmed by senior management at NHS England meeting in London in October

Swale CCG in Kent have apparently acknowledged DIO2 gene and are offering test on NHS, also acknowledging if gut biome affected and gluten then patients also need T3

[Kipsy in reply to SlowDragon]

Wow! Well I reckon anyone who has Hashis has poor gut biome unless they have tried to improve it. That’s all really positive. Thank you for the info.

[Eimear78 in reply to SlowDragon]

Greater Manchester. Apparently they only prescribe when you're in crisis

[SlowDragon Administrator in reply to Eimear78]

Then you should fight it

gmmmg.nhs.uk/html/dnp_grey.php

Yes on their website they link to BTA - as proof of their decision

When you go to BTA website, BTA SUPPORT prescribing of T3 and management by endocrinologist

british-thyroid-association...

british-thyroid-association...

Contact your local PALS

Might be this one

cmft.nhs.uk/information-for...

[SlowDragon Administrator]

Are your vitamin D, folate, B12 and ferritin optimal?

Not just 'in range'

Presumably you are strictly gluten free as well

[Eimear78 in reply to SlowDragon]

I haven't gone down the gluten free route as it's not autoimmune. All of the other are being supplemented in some shape or form.

[SeasideSusie Remembering]

What have you done about improving your nutrient levels that you posted a couple of months ago Folate, Vit D and Ferritin were all low and needed supplementing healthunlocked.com/thyroidu...

I didn't see your post at the time or I would have responded. You mentioned my name in your message but you didn't tag me. To tag someone you need to put @ immediately in front of their username, leaving no space, then click on their user name from the list that pops up and it will turn blue like this Eimear78

[Eimear78 in reply to SeasideSusie]

Hi SeasideSusie I have been taking the Vitamin D and Magnesium Malate for a month now. I am finding it difficult to have liver every week but eating plenty of veg. He didn't seem worried about any of those and said he will test me for Vit D at my next appointment. He also didn't think my active B12 was a worry.

Out of interest is there anything I should look out for when I increase the medication? Just in cases it goes the other way.

[SeasideSusie Remembering in reply to Eimear78]

Your tag didn't work it's SeasideSusie (no space) with @ directly in front then look below the message box you are writing in for the list of members names that pop up and choose the correct one from that, click on it and it turns the name you've typed blue.

Your GP wont be worried about any of those levels because they're not trained in nutrition and they are in range, albeit low.

Your Vit D was 37.8nmol/L and clearly says Insufficient 25-49 so your GP should have at least agreed it wasn't good enough. How much D3 are you taking? Are you taking K2-MK7 as well as the magnesium, both are cofactors.

What about your Ferritin at 54.7? If you can't eat enough liver you could take some form of iron tablet and take it with 1000mg Vit C to aid absorption.

Are you taking a B Complex for your folate level of 8.8.22 (2.91-50)? Folate should be half way through it's range.

I can't comment on active B12, I only really know about serum B12.

I'm assuming your increase in Levo is 25mcg? There is plenty of room to increase going on the results you posted 2 months ago so I don't think you need anticipate any problems unless you are super sensitive.

[Clutter in reply to Eimear78]

Eimear78,

SeasideSusie posted while I was editing your post to tag her.