hello good people. I’ve now been transitioning to Erfa from levothyroxine for just over four weeks. I’ve felt really awful - headaches, weakness, nausea, feeling faint and or dizzy, incredibly exhausted. I am taking one and a half grains. Erfa is 30mg. I was taking 75/100mg Levo on alternating days which my results would indicate was insufficient. Talking to a couple of friends it seems it can take 6-8 weeks to switch and feel ok. I was taking my Erfa in the night as my sleep is shot (since March when I went cold turkey on lyrica I’d been taking at night for 15 years) so I’d take early morning. Today I decided to take an additional half grain late pm. Tho I have to say I don’t feel quite so dire as when I first began to change over some days it’s really hard to function.
I intend to switch to Thyroid S in December as I can’t afford the Erfa plus doctor plus prescription for the rest of my days but I won’t switch til am back from a wonderful trip I’ve planned in case I have a bad reaction again!
questions … is this normal? What are your experiences time frame wise and has anyone here changed from Erfa to Thyroid S and was it less “painful” than coming off levothyroxine? Other helpful comments welcome! Thank you 🙏💜
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Starseed56
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in addition I meant to say I’ve been having hot flushes definitely not associated with menopause so either due to wrong dose of thyroxine or withdrawal from pregabilin or both or something else 🤷♀️ they seem worse since I switched to Erfa
I’m also switching to ERFA right now and I noticed what felt like withdrawals which sound like what you are describing. I also had palpitations which freaked me out but I’m about two weeks in now and over the worst and I’ve felt better each day really especially once I got to 120mg a day. That’s when the withdrawal feeling and palpitations stopped so I think it’s just a matter of needing more. I already feel so much better than I did on levo and it just feels so smooth and calm when it’s working so don’t give up until you get to the right dose. I’m worried about the cost of buying private ERFA for the rest of my life too but if it keeps working like this I’ll just have to turn to a life of crime to fund it or something lol. 😂 If you find a good source that ships to the UK can you let me know too please? Hope you feel well soon. 👍
Thanks so much for sharing your experience with me it’s encouraging. I’m about 5 weeks in and now on 2x30mg the last couple of days when I decided to take things into my own hands. Guess you may have felt the same going by your name on here! I have a source link given to me by a friend like us who buys from abroad. I can private message you with it. Seems like you transitioned better and quicker than me but also on a much bigger dose too!
I was told by someone on FB to stick with the doctor etc. once I’ve found my right dose am going to ditch the doctor buy my own and test myself. I’m fed up with being told what I can/cannot do, it’s my health, my body! Am also considering writing to the integrated commissioning board about nice “guidelines” and the unfairness of having to pay a lot for meds which on the nhs are free. If I get success I’ll post here, but first I need to get my levels sorted! Headaches almost gone, palpitations too exhaustion and breathlessness on climbing still here but finally improvements are in sight 🤗💜
I’m glad you are feeling better and thank you so much for the link! 😊 I’m thinking of doing a similar thing actually and I’m hoping to get well privately so I can use it as evidence to get the NHS to pay for the prescription. I really want to ditch doctors completely though as I really can’t stand to be around them anymore after all they have done. 😪 If they won’t do it I’ll happily never visit another doctor ever again!
Happy to share my letter when I write it. Let’s keep in touch about the journey of trying to get the scripts funded. Let’s not forget once Upton a time all thyroid patients had NDT! Agree re doctors …..
First and foremost you need to focus on your vitamins and minerals -
last month your ferritin was down at 27 and as under 30 - NHS are obliged to run further tests to rule out anything more serious - and from memory your B12 also much too low and was your folate and think we have no vitamin D readings.
No thyroid hormone replacement works well until these core strength vitamins and minerals are up and maintained at optimal -
I now aim for a ferritin at around 100 - active B12 75++ ( serum B12 500++ ) - folate around 20 - and vitamin D around 100:
Transitioning from T4 monotherapy to NDT should be simply and with little or no problems.
The T4 takes around 6-8 weeks to fully leave your body and in the time frame you slowly build up your dose on NDT :
I stopped 125 mcg T4 and the next day took instead 1/2 grain of NDT - taken
on an empty stomach and waited around an hour before eating or drinking anything -
in fact I take my NDT in the middle of the night so have no issues around food/breakfast etc.
Week 2 I increased my dose by 1/4 grain :
Week 3 another 1/4 grain - so forth and so one.
Everyday I monitored my physical symptoms of blood pressure, pulse and temperature AM and PM and whilst the first 2 remained constant I saw my temperature rise from 35.4 to 36.6 where it is now some 5 years on.
There comes a week where you do not feel as good as the week before and just uncomfortable in your skin - so you drop back down to the previous weeks dose - stay on that dose for 6-8 weeks having let the NDT bed into your body - and run a blood test.
Hopefully you'll see a proportionately high T3 than when on T4 monotherapy and with likely a lower T4 reading an a TSH probably low/suppressed but this is not important as we track on the T3.
Hopefully you will also find a reduction in symptoms - and this is your best dose on NDT at this pint in time.
If you get to 2 grains without any negative side effects - stay on that dose for 6-8 weeks and run a blood test to compare to your bench mark readings and if there is little or no movement in your T3 and hypothyroid symptoms persist maybe NDT is not the best treatment option for you.
It sounds as though you have Hashimoto's and liable to own erratic thyroid hormone production so this can cause issues and read some people stop their medication when they sense a swing in symptoms only to start again after the ' swing swings back ' as their thyroid will be further disabled and needing more, not less support.
Some Hashimoto's patients find NDT not suiting them as the content so similar to that of the human thyroid gland it causes further antibody interaction and find switching to a T3/T4 combo of synthetic thyroid hormones suiting them better.
I spent ages responding to your message then my iPad battery died losing the lot. So take 2
Thanks for your reply and remembering info. The blood tests other than medichecks were a year ago. I’ve just had them repeated, they’re similar but the gp forgot ferritin so am still waiting for that. They agreed to do vit D this time it’s 200. My B12 is now 469 (nhs parameters 189-883) last year was 367. I started to eat some red meat in January after 40 years, which may have helped some of my levels rise.
I also take the NDT in the middle of the night in attempt to feel better in the morning. I don’t BUT at least it doesn’t interfere with eating and drinking.
I checked my bp last week after feeling particularly faint like postural hypotension. It was a bit all over the place as was my pulse which varied from 58-90. Doesn’t help 😆
Yes I do have Hashis and yes there are times when I feel wired as in hyper but when that energy’s gone I’m back to low energy exhaustion.
I’ve sent latest bloods to the private doctor and told her how am currently feeling. Don’t want to play around too much with dosing right now as it’ll mess up my blood test tho it was suggested I take an extra half grain in pm so 1.5 in night plus half late pm? Interesting what you say about it not suiting everyone. I really want to get off the purely lab meds and on to something more natural but perhaps that won’t work for me. Clearly Levo wasn’t working for a long time I suspect!
Ah - yes - sorry - just reread your last post and picked up on the actual blood test date - let's hope this time around the ferritin is half way decent - as I found it took ages, over a year, to build to even 70.
B12 could do with building up to over 500 - no folate result - and your vitamin D is now double the target that I aim for !!
The longer you have been dealing with all this likely means the slower your recovery but once your vitamins and minerals are maintained at optimal the better able you will be to manage the next steps of finding the most appropriate thyroid hormone replacement option.
But yes, you could be in that small percentage of people who find NDT exacerbates their symptoms further - it's all trial and error - and a learning curve throughout - as one's body changes throughout life.
Yes,you read that correctly. I was wondering if it comes in 30 and 60? Or only 30? Am beginning to wonder how much the private doctor knows about this. She says she’s helped others but wanted me on low dose naltrexone and I’m trying to get off drugs not just switch to different ones! So I declined that. Before I consider upping the dose I need to know if feeling so rough is about the NDT itself, the switching period, or wrong dosage. It’s far more complicated than I’d realised! 💜
I have a full section on potentially available dosages of all prescription desiccated thyroid products.
However, availability depends also on supplier. Some sources will not offer the full range of dosages that are manufactured.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
Please can you just advise me is 1.5 grains of Erfa 30mg sufficient if I was taking 75/100 mg Levo alternately. I’m so utterly exhausted, am not tech savvy and can’t find this info in the link you gave me? Thank you!
Please can you just advise me is 1.5 grains of Erfa 30mg sufficient if I was taking 75/100 mg Levo alternately.
Some NDTs e.g. Thyroid-S only come in one strength i.e. 60mg or 65mg of NDT, and for historical reasons this is referred to as 1 grain (a very old measure of weight).
1 grain converts to approximately 64.8mg. Some manufacturers have gone for 60mg as being equivalent to 1 grain and some have gone for 65mg. Erfa has gone with 60mg.
In the case of someone saying they take 1.5 grains of Erfa then say that they are taking Erfa 30mg I'm confused about your actual dosage.
What is your total dose of Erfa in mg? Bear in mind that the weight of one of your tablets (30mg i.e. half a grain) is NOT the same as the weight of T4 (18mcg) and T3 (4mcg) in the 30mg tablet. And note that mg and mcg are not the same either.
1mg = 1000mcg
According to this link (my bolding) :
[I don't know what the character is after the word "embossed" - it doesn't display or copy properly on my PC.]
Erfa’s Canadian Thyroid has slightly different ratios than the USP ratios of US brands:
30 mg tablet embossed �ECI 30�, has 18 mcg. of T4; 4 mcg. of T3 (as compared to 19/4.5 in US brands) Equivalent to the US one-half grain.
60 mg tablet embossed �ECI 60�, has 35 mcg. of T4 and 8 mcg. of T3 (as compared to 38/9 in US brands) Equivalent to the US one grain.
So if 30mg contains 18mcg of T4 and 4mcg T3, are you taking one and a half tablets of 30mg Erfa i.e. 30 + 15 mcg = 45mg Erfa?
Or are you taking one grain plus half a grain Erfa i.e. 60mg + 30mg i.e. 90mg Erfa?
45mg Erfa is equivalent to 18mcg + 9mcg = 27mcg T4 and 4mcg + 2 mcg = 6mcg T3.
90 mcg Erfa is equivalent to 54mcg T4 and 12 mcg T3.
Having got this far, there is another thing to consider... What do doctors consider T3 to be equivalent to in terms of potency when comparing to T4?
Some doctors consider T3 to be 5 times as potent as T4, some consider T3 to be 4 times as potent as T4 and some go for 3 times as potent as T4.
If you are taking 45mg Erfa and T3 is 5 times as potent as T4, then you are taking the equivalent of 27mcg T4 and (6 x 5) mcg T4 = 57mcg T4
If T3 is 4 times as potent as T4 , then you are taking the equivalent of 27mcg T4 and (6 x 4) mcg T4 = 51mcg T4
If T3 is 3 times as potent as T4, then you are taking the equivalent of 27mcg T4 and (6 x 3) mcg T4 = 45 mcg T4.
If you are taking 90mg Erfa and T3 is 5 times as potent as T4, then you are taking the equivalent of 54mcg T4 and (12 x 5) mcg T4 = 114 mcg T4
If T3 is 4 times as potent as T4 , then you are taking the equivalent of 54mcg T4 and (12x 4) mcg T4 = 102 mcg T4
If T3 is 3 times as potent as T4, then you are taking the equivalent of 54mcg T4 and (12x 3) mcg T4 = 90 mcg T4.
If you are taking 45mg Erfa then you are substantially under-dosed compared to the amount of Levo you were taking because at best you are taking the equivalent of 57mcg T4, and at worst you are taking the equivalent of 45mcg T4.
If you are taking 90 mg Erfa then you are taking a higher dose when compared to the amount of Levo you were taking because at best you are taking the equivalent of 114mcg T4, and at worst you are taking the equivalent of 90mcg T4.
Wow this is complex isn’t it humanbean? The Erfa the doctor has given me is definitely 30mg tho I understand it can come in other amounts. So to be clear … i am taking 45mg (one and a half tablets). I was under replaced on Levo as my T3 was only .2 inside the lower parameter ie it was 3.3 and the range starts at 3.1, and my T4 was around 17 rather high suggesting I don’t convert T4 to T3 very well.
I’m so grateful to you for doing the maths and explaining. Overnight I have decided I will up to 2 tablets which I will probably split one in the night and one mid pm and I will see the doctor on 20 October as that gives me two weeks to see if this is better. She clearly goes by bloods which I understand, but trying to align the dose as near as possible to what I was taking on the Levo also seems an important starting point for me! I’d like to have thought she knows what you’ve kindly shared with me …
Eventually I’d like to switch to Thyroid S and dispense with private doctors and prescription charges which would be a substantial financial drain for the rest of my days (am 67) but I don’t want to switch again til back from my longed for holiday next month.
Thanks. Was taking 75/100 alternate days ( under replaced) human bean kindly did calculations for me so I’m going to up to 2x 30g and see how that goes. 🙏💜
OK then - slow and steady - tortoise / hare - runs the thyroid hormone replacement treatment regime.
Try monitoring yourself on some physical symptoms -
i monitored myself on blood pressure, pulse and temperature - AM and PM -
Whilst these first two remained stable I tracked my temperature rise from 35.4 to 36.6 which gave me some encouragement that I was going in the right direction.
However I believe I do not have a thyroid gland - post RAI thyroid ablation - so my own thyroid hormone production - nil - and so with no erratic own thyroid hormones confusing my progress.
If you are only taking a total of 45mg of Erfa you are massively under-dosed.
A starter dose of ordinary Levo is 50mcg, and you are taking the equivalent of between 45 and 57mcg Levo with the Erfa. So it really isn't surprising that you are feeling awful.
Doctors treat prescribed thyroid hormones generally as if they are dynamite because they appear to be taught that thyroid hormones are dangerous - but they aren't.
Someone taking an NDT who has reached their optimal dose could end up taking anywhere from 2 grains up to 5 or 6 grains. (And if I've understood correctly you are only being prescribed half grain tablets.) You have a long way to go.
Are you sure Thyroid-S will be less expensive? It used to be very cheap, but has become incredibly expensive in the past couple of years. I used to pay £70 for 1000 pills; now, 500 pills (the biggest bottle available nowadays) costs over £200 (I don´t order from Thailand but from a source in the EU to avoid problems with customs).
Please can you private message me the details. I want to be able to buy without needing a doctor!! I will of course ask my GP first if she’ll prescribe on recommendation of private doctor can but ask! As I think I read here someone, Nice Guidelines are just that guidelines not laws! 💜
Yes, I think they charge more than others because they get it from an intermediary and both want to make a profit, but the price has nevertheless gone up since I first started taking Thyroid-S in 2014. Back then, it was a bargain. They blame it on raw material prices increasing due to swine fever.
My friend buys from Thai based company no customs charges as they put supplements on the form. She’s used for quite some time. $143 for 500 do messge me if you’d like details. 💜
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