Where do i get started?

[jojojo1983]

Hi

Im on 125mg of levo, feeling dreadful. Felt great on 175mg but endo says too dangerous. Endo applied for t3 and I've been denied.

So, decided i need to source t3 myself but i dont know where to start or what amount etc.

Any help would be great and appreciated

Many thanks

Jo x

[SlowDragon Administrator]

So you saw NHS endo and he recommended you have 3 month trial of T3?

If so then this should be funded initially by the hospital you saw endo at. Then taken over by GP assuming you do well on it

british-thyroid-association...

Can you post results from on 175mcg and now on 125mcg

Also do you have vitamin D, folate, ferritin and B12 test results and ranges

Do you have Hashimoto's, also called autoimmune thyroid disease, diagnosed by high thyroid antibodies ? If so are you on strictly gluten free diet?

Which CCG area are you?

Could Endo give you private prescription. This would enable access to German or French T3. Both cheap.

[jojojo1983 in reply to SlowDragon]

Hi

Thanks for your reply. He said it had all changed and he has to apply to some panel to prescribe it? Panel have said no so he is appealing it.

I will get my results and post asap.

Many thanks

[SlowDragon Administrator in reply to jojojo1983]

Yes NHS England were trying to ban it due to cost.

If an NHS endocrinologist says you have clinical need CCG can NOT refuse

See Improve Thyroid Treatment campaign on Facebook for more info and letter templates. They also have list of CCG's current policies on T3.

Essential to get vitamins optimal FIRST

Plus gluten free likely to help or be essential if you have Hashimoto's.

Roughly were in UK are you

[jojojo1983 in reply to jojojo1983]

I am in north wales x

[SlowDragon Administrator in reply to jojojo1983]

Wales doesn't have CCG's

Only England

Here's Welsh policy document on Liothyronine

awmsg.org/docs/awmsg/medman...

So it's allowed if endocrinologist says you need it

[jojojo1983 in reply to SlowDragon]

Hi ive got my results.

Sept 17 on 150mg thyroxine free t4 18.6 and tsh 0.08

I have no idea what that means

[SlowDragon Administrator in reply to jojojo1983]

Do you have the ranges on these (figures in brackets after each result)

You also need to know levels of vitamin D, folate, ferritin and B12

Plus do you have high thyroid antibodies

Ask GP to test if not been done

TSH is very low, many medics would say too low and would want dose reduced

FT4 is probably near top of range

Need FT3 tested to see if you are converting well

If we have high thyroid antibodies (Hashimoto's) then very often poor at converting because of low vitamins and often food intolerances. Most common is gluten

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

If you normally take Levo on waking, delay until after test.

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

[jojojo1983]

What is ccg?

[shaws Administrator in reply to jojojo1983]

This is an explanation:-

kingsfund.org.uk/publicatio...