Levothyroxine combined with NDT?

[Lavender-Blue]

Hi All

With the difficulty obtaining T3, does anyone take small amounts of NDT in order to get T3 (eg: a half grain tablet cut into four, taking one quater am and pm)into their body?

Curioys, With NDT being easier to obtain and cheaper to buy.

[SeasideSusie Remembering]

You'd have to take into account the amount of T4 in NDT as obviously you'd be increasing the total amount of T4 as you're also taking Levo. As most NDT is about 38mcg T4 and 9mcg T3 per grain, then half a grain would be 19mcg T4 and 4.5mcg T3, and 1/4 of a half grain tablet gives just 1.125mcg T3 so you're talking about just 2.25mcg T3 daily.

[Lavender-Blue in reply to SeasideSusie]

This amount doesn't sound like a lot, but enough to make a difference.

[SeasideSusie Remembering in reply to Lavender-Blue]

If it's enough to make a difference then that's good, it's what you need but it's a very small amount of T3 and a bit of an increase in T4. Or is it a case of you may need more T4 and natural conversion will give an extra bit of T3 anyway? And are your nutrient levels optimal (Vit D, B12, folate, ferritin) so that thyroid hormone can work properly?

Have you got any current thyroid and vitamin results?

[Lavender-Blue in reply to SeasideSusie]

I came off NDT in August after initially been supported by my endocrinologist. He then dropped me due to NHS no longer supporting T3/ NDT patients.

I continued self medicating for 18 months or so unsupported. Hence going back on levothyroxine.

I have been trying to titrate the levo since August.

Initially put on 100mcg ( came off NDT with a bump)! No T3.

Got pains in chest, heart, arm and fingers numb. Several A &E visits!

During this phase I had to add small amounts of NDT,the heart ect then went away after taking some NDT.

I no longer have to add NDT for that reason, levels of levothyroxine must be now up, but I feel so rubbish, tired, puffy eyes.

I am due for tests you mentioned in December, really trying to stay on levo, but feel me energy is taken up by constantly being with the discomfort in my head, eyes and face.

When I have tried increasing levo, I feel worse, end up dropping it!

[SeasideSusie Remembering in reply to Lavender-Blue]

Do you feel as though you can wait until December to see what your levels are like? If not you could do a private test with Medichecks or Horizon, order today and you could do it next week, possibly have results back by Friday. Just a thought.

33% discount code still showing at top of page with Blue Horizon here (was meant to finish yesterday):

bluehorizonbloodtests.co.uk...

Medichecks have special offer showing at the moment here:

medichecks.com/thyroid-func...

[Lavender-Blue in reply to SeasideSusie]

I can wait until December. Not feeling confidant or looking confidant either on kevo!

[Lavender-Blue]

Not sure what to do....I have just come off the phone with the Secretary of an endocrinologist I was seeing a few years ago.

I asked what the situation is with him prescribing T3..

Secretary said it is my GP who can prescribe (uf willing) and that the endocrinologist/ hospital will monitor bloods.

Feel like it's a constant fight with services , so thinking of adding a bit of NDT.

[SeasideSusie Remembering in reply to Lavender-Blue]

The secretary is wrong. T3 on the NHS has to be initiated by an endo who, if agreeable, would give a trial of possibly 3 months. If you are to continue on T3 then your GP then takes over prescribing. SlowDragon will correct me if I'm wrong.

[SlowDragon Administrator in reply to Lavender-Blue]

Current situation, if you want T3 prescribed on NHS, is that initial 3-6 month trial of adding small dose of T3 alongside Levothyroxine, it MUST be initiated by NHS endocrinologist and T3 prescribed via hospital pharmacy

As per New NHS England Liothyronine guidelines July 2019

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Currently it's extremely difficult to find any NHS endocrinologist prepared to stand up to pressure from CCG NOT to prescribe

There are a few. But the majority of endocrinologists prepared to prescribe are either solely private, or are NHS but will only prescribe if you see them as private patient

Obviously it's all about cost

Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists who will prescribe T3

thyroiduk.org.uk/tuk/About_...

This useful website - can search all different medication currently prescribed in England

Showing results of generic Liothyronine prescription rates for all CCG areas. You can search by individual CCG area too

openprescribing.net/analyse...

[Lavender-Blue]

Yes, I thought it was the other way around!

Are you on levo / NDT/ T3?

[SeasideSusie Remembering in reply to Lavender-Blue]

I'm on Levo and self medicate with T3.

[Lavender-Blue]

Have you had to go it alone? Is your G.P aware, if so are they monitoring you?

Where are you getting your T3 supply, can you PM me with your source and cost?

How do you take the T3, the T4 / T3 ratio for example?

[Lavender-Blue in reply to Lavender-Blue]

Seaside Susie. Thank you

[SeasideSusie Remembering in reply to Lavender-Blue]

Yes I've had to go it alone and I haven't told my GP. I was very unwell with no help or even understanding from GP so I did lots of tests privately and discovered I had poor conversion of T4 to T3 along with nutrient deficiencies so I've had to resort to self help.

I don't have a supplier at the moment, I stocked up well before the Greek supplier turned rogue a couple of years ago and am still using that stock. As I use less now than I did then I still have plenty to keep me going for a long time.

The ratio of Levo to T3 has changed a few times as I've been on this journey and discovered where I need my hormone levels to feel best.

As I'm unwell at the moment with a non-thyroidal problem, and it seems it may have messed with my hormone levels, I'm tweaking doses again so am not, as yet, stable on a ratio, I will have to see what happens.

[Lavender-Blue]

I empathise with you!

I am considering adding a small amounts of NDT.

I can see from my past experiences with NHS, it us probably a waste of time even asking for T3

[Lavender-Blue]

Hi

Took 1/4 0f a 0.5 grsin at 8.15pm, beginning to lift!

Such a tiny amount!.