From levo to erfa

[Donnaca]

Hello, I thought I would give an update on my change from levothyroxine 150mcg to Erfa 2 grains per day.

I am on the autoimmune paleo diet and occasionally add in gluten free oats or beans/lentils when my body asks for it. No dairy and no gluten.

First couple of weeks going from levo to erfa was difficult, extreme brain fog and exhaustion but constipation had gone and I could sleep 8 solid hours without waiting ages to go to sleep.

After 8 weeks on Erfa I can't say I feel that different, my hairloss is much worse, no weightloss, still can't get off to sleep without melatonin most nights, tired, moody and still get constipation but this is the only area that has improved a bit.

Before I started Erfa I was doing weekly sessions of low laser therapy over my thyroid gland which I think had a positive effect on my antibodies as they used to be over 280 in Dec 2021. I do feel concerned that I have heart palpitations sometimes which I hoped would stop on erfa.

I will do another 2 months but it is very expensive paying for a private prescription, report, blood tests and the medicine.

Here are my latest blood results (I am on a supplement programme through the private doctor and not taking B12 injections anymore)

August 2022

Ferritin 53.6 ug/ L 13 - 150

Folate 13.68ug/ L > 3.8

B12 Active 115 pmol /L 37.5 - 150

Vitamin D 72nmol/ L 50 - 200

TSH 0.04mU/L 0.27 - 4.2

Free T3 5.02 pmol/L 3.1 - 6.8 R

Free Thyroxine 14.6 pmol/L 12 - 22 R

THYROGLOBULIN ANTIBODIES 177IU/mL < 115 R

THYROID PEROXIDASE ANTIBODIES 179IU/mL < 34 R

May 2022 (on B12 shots)

Ferritin 38.6 ug/ L 13 - 150

Folate 11.35ug/ L > 3.8

B12 Active 150 pmol /L 37.5 - 150

Vitamin D 66 nmol/ L 50 - 200

TSH 0.36 mU/L 0.27 - 4.2

Free T3 4.08 pmol/L 3.1 - 6.8 R

Free Thyroxine 21.6 pmol/L 12 - 22 R

THYROGLOBULIN ANTIBODIES 170 IU/mL < 115 R

THYROID PEROXIDASE ANTIBODIES 190 IU/mL < 34 R

Any feedback about your journey on erfa or if I am taking too many grains would be grateful to know.

Waiting for my private report back from Doctor which takes 10 days.

[pennyannie]

Hello Donnaca :

OK - so no thyroid hormone works well until your core strength vitamins and minerals, namely those of ferritin, folate, B12 ad vitamin D are up, and maintained at optima levels.

When I fell into this forum I had a ferritin of 22 and everywhere I researched suggested this mineral needs to be at least over 70 for any thyroid hormone replacement to work well in supporting T4 to T3 conversion.

I now seem to feel at my best with a ferritin at around 100 folate at around 20 : active B12 at 75 ++ ( B12 serum 500++ ) and vitamin D at around 100:

Your T3 has increased since May and it is your level of T3 that we track when on NDT .

Your TSH is now low suppressed, though it wasn't that high before but anyway this is OK as when taking any form of T3 the TSH naturally, becomes lower .

Your T4 has dropped and this is not unusual when on NDT as these blood tests and ranges were introduced to be used alongside Big Pharmas T3 and T4 thyroid hormone products and with NDT you simply dose to the relief of symptoms.

Is this blood test after being on 2 grains for 8 weeks or of building up to 2 grains at 8 weeks.

I would work on getting your vitamins and minerals up and maintained at optimal levels and then these 2 grains may show a different T3 reading - but as it stands, with NDT if you feel improved, but not fully, after staying on 2 grains for 6-8 weeks - restart building up again in 1/4 grain increments weekly/fortnightly as advise, ticking off symptoms as they disappear.

Are you also monitoring yourself on blood pressure, pulse and temperature - I found this beneficial as my pulse and blood pressure remained constant but I watch my temperature rise from 35.4 to 36.6 where it still hovers today, some 4/5 years later.

P.S. Just looked back and see I've written to you before ; My weight was the very last piece of jigsaw to be completed and was around a year into self medicating with NDT - it's now over 4 years later and I still haven't purchased any new clothes and have ring adjustments on my jewellery rather than get anything sized down - maybe I need to believe in myself more ???

[Donnaca in reply to pennyannie]

Hi Pennyannie, you have written to me before and you are always so generous with your knowledge, thank you.

I will go up with my grains and see if I feel better, I am still taking all the supplements - my goodness it is slow trying to get optimal results, my ferritin & vit D is especially hard to improve which I guess is to do with an unhealthy gut that I have been trying to heal for 10 years!

Do you take your NDT throughout the day? I find this quite annoying and started taking it just in the morning which seems ok. My private doctor told me to just swap levo for erfa 2 grains immediately so I did that, I had to take a few 25mcg of levo every few days (for 2 weeks) when I adjusted because my brain fog was so bad I couldn't work, it immediately relieved it.

I will monitor my temp and blood pressure again, I do feel much warmer though (I know the weather is hot but I am always warm now).

[pennyannie in reply to Donnaca]

OK then - well the T4 takes around 6-8 weeks to fully leave the body and in that time frame as T4 ceases to be supportive the idea is to slowly build up in 1/4 grain increments the NDT.

So ideally when you get to 2 grains the NDT over a period of 6-8 weeks it has had time to bed in and be absorbed slowly by the body so I think you got there too quickly which hasn't done you any favours as your body is still in catch mode and wondering what has happened.

Yes you need to be patient and also work on those vitamins and minerals - it took me around 18 months to restore my core strength vitamins and minerals ( RAI thyroid ablation) and thyroid hormone replacement does take time - but take heart - as your T3 is moving in the right direction - remember the tortoise and the hare ?

We all start off from different places, with differing symptoms and experiences, but slow and steady wins the race where thyroid hormone replacement is concerned.

[pennyannie in reply to Donnaca]

Good morning :

I take my NDT all in 1 go at around 3 in the morning when I need a toilet break ;

I only seem to need 1 + 1/2 grains :

I've tried splitting, or adding a little in the PM but not aware I've seen any benefit :

If I need a blood test to ' fit into ' the ranges that were designed for Big Pharma's synthetic T3 and T4 options - I will need to wait 24 hours from last dose to blood draw or the option would be wait around 12 hours and have eaten something.

However my numbers will still confuse some doctors who do not know of NDT as my T3 will still be proportionately higher than my T4 and the opposite way round to what they understand and of course my TSH is down at 0.01 - which it needed to be if i was to be well on T4 monotherapy.

Sorry I think i missed this question last night - as after my ' best before time for day ' !!!

[hipolion]

Hi, I swap like you on 2 grain of Erfa from 125levo &15T3 but it wasn't enough for me. So I increased the dose to 2,5grain and it's far better but I split the doses into 3. Maybe I will have to add more.

[Donnaca in reply to hipolion]

I think I definitely need more too and going to increase tomorrow and see how I go. It’s a bit annoying splitting doses because I forget to take it