Erfa Thyroid Help: Hi All, I’m back again for... - Thyroid UK

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Erfa Thyroid Help

Catlady101 profile image
24 Replies

Hi All,

I’m back again for some more advice if possible ☺️ I had a consultation with a private endocrinologist a few weeks ago and he agreed to give me a private prescription for Erfa Thyroid. I’m currently on 100mcg of levo and my last results were:

TSH - 1.07 (0.27 - 4.2)

T4 - 21.1 (12-22)

T3 - 4.23 (3.1 - 6.8)

So the private endo recommended I take 50mcg of levo along with 1 tablet of 30mg Erfa in the morning and a further 1 tablet of 30mg Erfa in the evening before bed.

This is all new to me so wanted to see if this sounds right to people who have experience of taking NDT. I’m a bit worried of throwing my T4 and TSH off as I’ve worked so hard to get them where they are now, along with lots of supplementation for my vits.

Any help welcome 🙂

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Catlady101
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24 Replies
Lalatoot profile image
Lalatoot

Erfa 30mg tablets of thyroid extract contain levothyroxine (T4) 18mcg and liothyronine (T3) 4mcg.

So in theory that would mean you would be on a dose of 86mcg T4 and 8mcg T3.

Catlady101 profile image
Catlady101 in reply to Lalatoot

Hi Lalatoot,

Yes I was thinking this also, I’m worried how much that 14mcg of T4 will affect me. So hard to know, I just don’t want to go backwards when I’ve come this far already.

Lalatoot profile image
Lalatoot in reply to Catlady101

It is hard to judge and we fine tune by trial and error.

Your Ft4 is nearly at the top of the range so I think you will be ok with that reduction.

Catlady101 profile image
Catlady101 in reply to Lalatoot

Thank you for taking the time to reply, I really hope so. Also do you know if it’s okay to jump straight in with halving my levo and adding the 2 tabs of Erfa?

Lalatoot profile image
Lalatoot in reply to Catlady101

You are replacing the T4 with different T4 so that might have an effect as a change of brand.

When adding T3 a few on here have gone straight to dose. However generally we recommend a starter dose of 5mcg or 6.25mcg (depends on tablet size) for the first week adding in another 5mcg the second week.

Trust your instinct. I haven't taken Efra - I only added T3 to my T4. Do what you think is right for your body following the general guidelines of the endo.

Catlady101 profile image
Catlady101 in reply to Lalatoot

Thank you I really appreciate that. I guess only time will tell if it’s right for me 🤞🏻

Dottie19 profile image
Dottie19 in reply to Catlady101

Hello

I found ERFA was so much better for me than Levothyroxine over five years

Unfortunately having difficulty getting a prescription now .

Are you in the UK ?

It is trial and error .

Wishing you well 🌸

Catlady101 profile image
Catlady101 in reply to Dottie19

Hi Dottie,

Yes I’m in the UK. I really hope it works for me as it did for you 🤞🏻 xx

carorueil profile image
carorueil in reply to Catlady101

Hope it does too.. I switched to it 9 years ago and it's been the best I've ever been... Could never manage on levo... would love for it to be reimbursed by healthcare though! (don't live in UK).

stockman27 profile image
stockman27

I am really surprised that you were able to convince him you needed NDT. Your blood tests are fine you are nearly on the saturated end of the T4 and your T3 is right where its sould be. I am surised that your TSH is not lower that it is. good luck with the NDT.

Catlady101 profile image
Catlady101 in reply to stockman27

Hi Stockman27, I know what you mean. The symptoms were still persistent for me so I’m really hoping the combination will help 🤞🏻

tattybogle profile image
tattybogle in reply to stockman27

I used to believe that mid range FT3 was good enough , or where it should be , but since researching the origin of the 'a normal thyroid produces 80%T4 /20%T3 ' dogma i now know that there is a huge variation in the populations natural T4/T3 ratios.

It comes from a study by 'Pilo' , done on 14 'normal' healthy people (yes , that many !), mostly men, only one of whom had this magic 80/20 ratio (Subject No.7 i believe ). More of them than not had a T3 level that was equal to or higher than T4.

After that some statistics were applied to the results and lo and behold : they came up with ' a normal thyroid gland produces 80/20 so thats what you all must have' and it's been repeated ad nauseum ever since.

Tania S Smith has written a lot about this in thyroidpatients.ca (Canada) recently.

Catlady101 profile image
Catlady101 in reply to tattybogle

Hi Tattybogle,

Do you think I will be raising my T3 too far now? X

tattybogle profile image
tattybogle in reply to Catlady101

No i dont x

, i was trying to make the point that mid range T3 may not be enough for some people, and that plenty of 'healthy' people have T3 that is equal to or higher than T4, so why should the same not hold true for people taking thyroid hormones.

So long as Ft3 is within Lab ref range and you do not experience any signs of overmedication i see nothing to worry about.

I wish you well while you try and find the right amounts for you. Be patient,and go slowly, i imagine it takes the body a while to get used to a change like this. I have not tried adding T3 but would like to. I've just had 20 yrs of Levo,and am not impressed with the results.

Catlady101 profile image
Catlady101 in reply to tattybogle

Thank you I really appreciate that. I really hope it does the trick for me, so hard to know what to do for the best isn’t it xx

pennyannie profile image
pennyannie in reply to tattybogle

Hey there Doc Tatt :

It's interesting isn't it ?

I am now on NDT only and if you take " theses ranges " - which were designed to be used alongside Levothyroxine - my own results expressed as a % through these ranges show a much higher T3 than T4 :

On Levothyroxine my T4 was always around 80/110% through the range whilst my T3 lagged back at anywhere between 25-45% and never felt as good I am am now:

My vitamins and minerals were similar on both of thyroid hormone replacement :

tattybogle profile image
tattybogle in reply to pennyannie

Yes, when i first got sight of my historic results i was dissapointed... i was 'hoping' to see obviously low FT3 ,despite low TSH and plenty of FT4, ie poor conversion ,and so an explanation for my 'half-a-life' and justification for asking for some T3 to be added.

But what i found was ,like you 111% ft4 / 54% ft3 or 66% ft4 / 32% ft3....... so for a long while i thought well there's nothing much wrong with my conversion then.

But now i realise that it's possible that in health i could well have been some one who had T3 equal to or even higher than T4...... which would explain why Levo doesn't fix me properly

pennyannie profile image
pennyannie in reply to tattybogle

Yes, years ago hypothyroidism, caused by whatever reason, would have been treated with a little nugget of pig thyroid to chew on, and at the next visit, if symptoms persisted, a larger nugget sliced off. and so forth and so on until you, the patient, felt restored to good health.

More recently you had " old school " doctors still using this trusted hormone replacement alongside Levothyroxine, when T4 didn't " do it " for some patients.

Currently it seems NDT on the NHS is barely happening - and we are left with no treatment other than T4 and then encouraged to believe we need a myriad of other medications for " other conditions " that are not currently deemed as symptoms of hypothyroidism.

It is totally alarming as although prescribing NDT is more expensive than Levothyroxine, on a like for like basis, if you take into account all the other medications we're encouraged to take Big Pharma must be very encouraged with this broken, illogical system we find ourselves in, not forgetting one's overall health and ability to get on with one's life and contribute to society, but then silly me, for expecting the well being of the patient to be the top priority.

GTBias profile image
GTBias

Hi, I’m taking ERFA and it is very good for me. I improved my health a lot! I take 30mg in the morning and 15mg in the afternoon at 3:30pm... if I take it later I cannot sleep, it wakes me up... in some cases NDT is better than levo... I’m also following AIP/ paleo diet, gluten and diary free diary...which helps a lot!

Catlady101 profile image
Catlady101 in reply to GTBias

Hi GTBias,

Do you take the afternoon one on an empty stomach? I was worried about taking it before bed to be honest because I don’t want it to interrupt my sleep. I may try taking the second dose more afternoon and see xx

GTBias profile image
GTBias

Hi Catlady101, yes, I take the one in the afternoon on empty stomach.. moreover to avoid any hearth burning I take the ERFA sublingual..

Catlady101 profile image
Catlady101 in reply to GTBias

Oh right I didn’t know that was an option! Does it dissolve well? X

pennyannie profile image
pennyannie

Hello Catlady

I think you will do better on NDT but you will " throw off " your T4 and TSH numbers - that's inevitable as you will be taking a thyroid hormone replacement containing T3 and T4 and it seems to be that when taking any form of T3 your TSH can drop to low suppressed levels and your T4 may also drop down the range to where it currently is on monotherapy with T4.

You are currently taking 100 T4 and plan to drop T4 to 50 and add 36 T4 + 8 T3 split into two equal doses.

T3 is said to be about 3/4 times more powerful than T4 so in effect this pans out at about 110/118 T4 - but NDT is totally different to synthetic T3 /T4 so, maybe a rethink.

I stopped 125 mcg T4 one day and started NDT at 1/2 grain the next day = 19 T4 + 4.50 T3

and each following week I increased by a 1/4 of a 65 mg which is around 9 T4 + 2.25 T3 :

I seem relatively settled on around 1+1/2 grains of NDT but do maintain my vitamins and minerals at optimal levels to assist in the conversion of the T4 component in NDT.

Since you are splitting your medication between Levothyroxine and NDT I think I would start the first week on 50 T4 plus 1 dose of NDT and wait around a week and if you feel ok introduce the second 1/2 grain :

What did your consultant advise ?

It's all a bit trial and error, so just go slow and steady ;

I'm with Graves post RAI thyroid ablation and now manage lingering Graves, thyroid eye disease and hypothyroidism.

Catlady101 profile image
Catlady101 in reply to pennyannie

Hi Pennyannie,

Yes I agree with you, I expect my TSH and T4 will alter quite a bit. My consultant suggested that I take 50mcg Levothyroxine and then 2 30mg tables of Erfa, one in the morning and one evening and then retest after 6 weeks to see how I am in myself and how my bloods are x

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