Saw new Endocrinologist today - starting trial of Erfa!

[ShonaGreen]

I met with a new endocrinologist today (from the Thyroid UK list) and it was like a breath of fresh air! He thinks that my low levels of TSH, Free T4 and Free T3 could be central hypothyroidism so I had a short synacthen test today too. He said that regardless of the results, I should be treated based on my symptoms until if/when my Free T4 and Free T3 go above normal, which will probably not happen. So he's agreed to a trial of Erfa 30mg (alongside 25mg Levothyroxine) and will review again in 6 weeks. If it goes well, he hopes that my GP will agree to prescribe it (I think the CCG for my area has prescribed T3 in the past) and if not, he will provide a private prescription. I think this is good news and I'm looking forward to seeing how much of a difference taking NDT will make to me!

He also thinks I may have an issue with Vitamin D as my levels haven't really increased since using the Better You sprays. He said that if I had a real problem then the sprays wouldn't make much difference. I also had full thyroid blood tests today, including Vitamin D.

For other people taking Erfa and/or Levo, I'd like to know if they take both medications at the same time, before having caffeine, food, etc? Any other info about taking Efra would be much appreciated!

[SeasideSusie Remembering]

ShonaGreen

Not sure if you know this, but just to be clear, Erfa/NDT is not T3. T3 is liothyronine. Erfa and all other brands of NDT are a combination of T4 and T3 and Erfa 30mg tablet contains 18 mcg of T4 and 4 mcg of T3

See stopthethyroidmadness.com/a... (scroll down until you see CANADA’S “THYROID” aka ERFA).

How much Levo are you currently taking?

Your new thyroid hormone replacement will be 25mcg Levo + 18mcg T4 in the 30mg Erfa = 43mcg T4 plus 4mcg T3 from the Erfa.

As the Erfa contains T4 you will need to follow the same advice as taking Levo, i.e take on an empty stomach, one hour before or two hours after food with water only, and water only for an hour each side, two hours away from any other medication or supplements (some need 4 hours). You can take the Levo and Erfa together, there's no problem with that.

[ShonaGreen]

Thanks SeasideSusie , I had a feeling I was getting myself confused with T3/NDT, my head is still spinning a bit, I was taken aback that the endocrinologist was actually listening to me!

I've been taking 75mg Levo for the last 3 weeks (increased from 50mg started in April). The endo said to reduce this to 25mg whilst taking Erfa.

[SeasideSusie Remembering in reply to ShonaGreen]

The 4mcg in Erfa is roughly the equivalent of 12-16mcg T4 so with your 25mcg Levo plus the 18mcg T4 in Erfa, you'll be taking a total of roughly 55 - 59mcg T4 so less than your 75mcg Levo. You may find this is not enough and it might have been better to reduce your Levo to 50mcg rather than 25mcg. But as you had only been on 75mcg Levo for 3 weeks it's anyone's guess really, see how you go, you can always increase further down the line.

Anyway, well done on getting this trial, I hope you do well.

[ShonaGreen in reply to SeasideSusie]

That makes sense SeasideSusie , appreciate your help!

[humanbean]

The thyroid hormone replacement you are writing about is called Erfa not Efra. It makes it easier to find out information with the correct name.

[ShonaGreen in reply to humanbean]

Thanks humanbean , I've fixed the spelling, hadn't heard of Erfa before today!

[Peroxideblader]

such good news to be listened to I was making an appointment with a lady endocrinologist but she left the spire hospital/private clinics in January so can you please pm me yiur endocrinologist name I.know you cant say it on here.. I'm all the symptoms and test results show secondary hypo too but doctors won't believe me..thank you

[ShonaGreen]

Peroxideblader just sent you a PM!