New erfa trial with levo - very worried about endo prescription and pharmacy NDT info. Please can anyone help?

[Opal79]

Edit - endo says take ERFA 30mg OD - I don't even know what OD means? Assume every day 30mg but pharmacy are saying its double that I think?

Hi I recently consulted an endo which was recommended by local thyroid patients so thought would try rather than go it alone as v ill atm.

I've been taking 112mcg the past few weeks after dx 2 years ago and most of last year on 100mcg levo.

Got worse in autumn last year, gp upped levo to 112, did nothing. So upped to 125mcg in March. Had lots of palpitations, takento A and E but all ok.

Follow up GP said unlikely due to levo but i disagree. I suspect I need more in winter than in mid seasons and summer too, so dropped to 118 which helped, and again recently to 112 which has helped palps abit.

Anyway consulted this endo after being on 112 for 2 or 3 weeks. Told him all my history, he said to drop levo to 50mcg and take NDT (ERFA) 30mg a day. And do this for 6 weeks before going back!

(He knows I'm financially limited so may be why the long gap but I keep reading 7 to 10 days titration for NDT?)

So the pharmacy in london the Dr said to contact, I'd be emailing wrong for past couple weeks! Spoke with them yesterday as they were closing and heard back today as needed to ask re allergies.

Anyway the Dr had prescribed me 30mg and this us the info the pharmacy gave me , which looks like more T4 and T3 then first thought? I thought 30mg was half a grain or is it different with ERFA?

Is it going to be safe to start T3 this high and T4 low amount? Dr had said drop from 112 to 50mcg levo to take with NDT.

I was already getting concerned about the drop from 112 levo to 50 so extra confused since the email! They are going to rush it through today so I get it tmw which is kind. Maybe I should just get it then decide? Sorry for rambling I'm so out of my depth lol.

ERFA Ingredients

"Each grain contains T4 35mcg + T3 8mcg per pill. Nonmedicinal ingredients: cornstarch, lactose, magnesium stearate, sugar and talc. Gluten-, paraben-, sulfite- and tartrazine-free."

Any guidance so appreciated please as I'm so worried and confused. Thankyou

[helvella]

I thought they were supposed to write instructions in plain English!

od, o.d., omni die

every day / once daily

helvella - Abbreviations, Acronyms, Latin

A document containing a list of many of the abbreviations, acronyms and Latin terms you are likely to find when reading documents about thyroid.

dropbox.com/scl/fi/jks8k4c3...

Last updated 18/07/2024

helvella.blogspot.com/p/hel...

[Opal79 in reply to helvella]

Thankyou, yes I'm confused, however I'm even more concerned as speaking with other local people that have also seen this Endo, he usually puts everyone's levo down to 50mcg whilst starting on 30mg erfa.

So my T4 meds will basically go from 112mcg to 67ish? Surely that can't be right?

I've since emailed him to ask if I could keep my levo higher as really ill atm with other things and being rehoused due to mould so very stressed and burned out. I do feel T4 helped me abit, and can't afford to get worse before titrating ERFA which would be every 6 weeks! It'll take months and I spent 9 months just titrating levo and I can't go backwards again I'd be too ill.

I've also asked if I can try T3 meds instead now too - as can't afford the cost of NDT if I need alot of it.

Do you think my levo should be reduced so much in either case please?

Also if he cant help or doesn't reply to my email I think I will have to go to roseway instead as I hear good things and feel i need somewhere registeredto help as canr go it alone yet, like buying abroad. I will also need compounded meds as have looked at all NDT and T3 brands and none of them are suitable - I have loads of allwegies plus MCAS.

Any advice would be most welcomed if poss please? I'm so confused and worried by the whole thing. No worries if not, thankyou

[helvella in reply to Opal79]

It does seem a large drop on T4.

But changing to desiccated thyroid is not quite as simple as using arithmetic on the thyroid hormone content. I don't take desiccated thyroid so do not have personal experience. I hope someone who has done this can help?

[Opal79 in reply to helvella]

Thankyou very much for your reply. Given my lack of finances I do think compounded T3 is now tbe best way to go. What would be the best advice for levo change when starting T3 please? I'm reading different things everywhere and have no idea. Thanks again 😊

[helvella in reply to Opal79]

Again - I do not take T3 so find it very difficult to make suggestions. Those with experience are a much better bet than me.

[Opal79 in reply to helvella]

Oh I see, sorry I must have misunderstood. Thanks very much anyway

[pennyannie]

Hello Opal :

Efra is just another brand of Natural Desiccated Thyroid -

with a declared measure of T3 and T4 in each 60mg grain - viz 8 mcg T3 + 35 mcg T4 :

NDT was the original and successfully used treatment option for hypothyroidism for over 100 years until Big Pharma launched its T3 and T4 synthetic options on the back of NDT in around the 1960s and then went about claiming market share.

I would imagine since you have Hashimoto's you are liable to ' swings in T3/T4 levels and symptoms as this thyroid auto immune disease proceeds to disable your thyroid and it is logical to try and replace with a full spectrum thyroid hormone replacement.

Do the contents of the Efra tablet as listed above by you - concern you - as I know with Hashimoto's you need to be aware of certain food stuffs - if so, you could ask, if a compounding pharmacy, that you have the NDT in capsule form, with few, if any, fillers.

The T4 - Levothyroxine reduction will take around 6-8 weeks to fully leave your body and within that time frame the Efra dose will have settled in your body -

so I think a review with T3 and T4 blood tests at around 6 week sensible.

It's said 1 grain NDT equates to around 100 mcg T4 - but I think these are 2 very different forms of thyroid hormone replacement and there is little comparison as it's all about one's own ability to absorb and convert the thyroid hormones which comes with many variables.

No thyroid hormone replacement works well until the core strength vitamins and minerals are up and maintained at optimal levels -

I now aim for a ferritin at around 100 - folate 20 - active B12 125 ( serum B12 500++ ) and vitamin D around 125.

Conversion can also be down regulated by inflammation, antibodies, any physiological stress

( emotional or physical ) depression, dieting an ageing - so goal posts move - and it's just a question of trying to keep all the co-factors ticking over to support the thyroid and body as best as we can.

[Opal79 in reply to pennyannie]

Hi thankyou for your reply, I'm quite concerned about the drop in levo tbh.

I'm even more concerned since speaking with other local people that have also seen this Endo, he usually puts everyone's levo down to 50mcg whilst starting on 30mg erfa.

So my T4 meds will basically go from 112mcg to 67ish? Surely that can't be right?

I've since emailed him to ask if I could keep my levo higher as really ill atm with other things and being rehoused due to mould so very stressed and burned out. I do feel T4 helped me abit, and can't afford to get worse before titrating ERFA which would be every 6 weeks! It'll take months and I spent 9 months just titrating levo and I can't go backwards again I'd be too ill.

I've also asked if I can try T3 meds instead now too - as can't afford the cost of NDT if I need alot of it.

Do you think my levo should be reduced so much in either case please?

Also if he cant help or doesn't reply to my email I think I will have to go to roseway instead as I hear good things and feel I need somewhere registered to help as cant go it alone yet, like buying abroad.

You've mentioned allergies etc, yes I will also need compounded meds as have looked at all NDT and T3 brands and none of them are suitable - I have loads of allergies plus MCAS so another reason to get T3. I say this begrudgingly as I agree NDT would be better for me with hashi, as you've said - but just can't afford it if high dose needed and especially if compounded on top!!

I have all my vits and mins well under control thankfully. This is because I have B12 deficiency from P.A. Dx last year by private specialist and following the B12 Society's protocol, so take v high doses cofactors to support my B12 (every other day) injections. All numbers are optimal. But the mould and rehousing by council is dragging along, very stressful which isn't helping autoimmune illnesses at all!

Thanks very much again

[pennyannie in reply to Opal79]

Well I self medicate and went straight from 125 mcg T4 to 1/2 grain NDT overnight -

the synthetic T4 takes around 6-8 weeks to fully leave the body and in that time frame I slowly increased my dose of NDT - and had a very smooth transition from one treatment option to another.

I slowly increased my dose by 1/4 grains weekly - some suggest fortnightly - monitoring myself on blood pressure, pulse and body temperature AM and PM and while these first 2 clinical results remained stable my temperature rose from 35.4 to 36.6 where it hangs around most days now 6 years later and I feel improved compared to how I was when taking T4 monotherapy.

Some doctors do suggest lowering the T4 rather than stopping it altogether - there are several ways to dose, treat and I'm afraid it does take time and money if consulting any medical professional :

You seem unsure about what you are doing - and talking of taking T3 instead due to the cost of Efra - so maybe just take a step back and rethink what is realistic for you at this point in time.

I'm with Graves Disease and post RAI thyroid ablation 2005.

[Opal79 in reply to pennyannie]

Thanks so much yes I've been very confused! But having looked at ingredients online, and being unsure how much T3 I'll actually need, it is now definitely making more sense to go thr T3 route with my levo. I'm probably not communicating that very well as I'm dyslexic and extra foggy so I apologise!

Ah that's helpful knowing how you titrated thankyou. Yes tbe endo wants to titrate 6 weekly which seems a very long time for me hence taking months on end! From what I've read here with T3 especially using Roseway, I think I can titrate quicker on T3? And if I don't need to reduce levo by much I'm fine with that if T3 titration is abit slower than I'd like, just didn't want to deal with much lowered levo at the same time.

Hopefully I've made abit more sense, I'm sorry if not. Thanks so much again 😊

[humanbean]

Grains are an old, outdated measurement that have been translated into modern measurements as milligrams. They are very slowly being left behind, but in some situations grains are still hanging on, long after they should have been given the boot.

1 Grain = 64.799 Milligrams

Some manufacturers of thyroid tablets and other medicines translated 1 grain as 65milligrams, others as 60milligrams.

Having said that, the 60mg (or 65mg) is (I think) the weight of the entire pill, not the weight of the active ingredients i.e. the T4 and T3. As you've commented the T4 and T3 weight is given in micrograms, not milligrams.

30mg tablets/capsules are treated as half a grain, and you need to know what the weight of the active ingredients are to make sense of thyroid tablet doses.

"Each grain contains T4 35mcg + T3 8mcg per pill". This is a standard amount of T4 and T3 to find in a 1 grain pill.

You might find this link helpful - it does have info on ERFA :

stopthethyroidmadness.com/a...

[helvella in reply to humanbean]

Close! The 60 milligrams is the weight of the Thyroid USP powder that they use to make the pills. The other ingredients will be in addition to that.

Two tablets, from different companies, though both might be a 60mg dose they could actually be different weights.

[Opal79 in reply to helvella]

Thanks, still abit confused by weights but atm trying to get my head around the amount equivalents I'd be taking, lol! My brain fog is terrible atm but v much appreciate the info thanks 😊

[Opal79 in reply to humanbean]

Thankyou, I'm abit confused about weights but it sounds as though you're saying what I've already been reading about the mcg/grain amounts so sounds the same?

However I'm now even more concerned as speaking with other local people that have also seen this Endo, he usually puts everyone's levo down to 50mcg whilst starting on 30mg erfa.

So my T4 meds will basically go from 112mcg to 67ish? Surely that can't be right?

I've since emailed him to ask if I could keep my levo higher as really ill atm with other things and being rehoused due to mould so very stressed and burned out. I do feel T4 helped me abit, and can't afford to get worse before titrating ERFA which would be every 6 weeks! It'll take months and I spent 9 months just titrating levo and I can't go backwards again I'd be too ill.

I've also asked if I can try T3 meds instead now too - as can't afford the cost of NDT if I need alot of it.

Do you think my levo should be reduced so much in either case please?

Also if he cant help or doesn't reply to my email I think I will have to go to roseway instead as I hear good things and feel i need somewhere registeredto help as canr go it alone yet, like buying abroad. I will also need compounded meds as have looked at all NDT and T3 brands and none of them are suitable - I have loads of allwegies plus MCAS.

Any advice would be most welcomed if poss please? I'm so confused and worried by the whole thing. No worries if not, thankyou