I tried every brand going of levo and all resulted in horrific dizziness, fatigue, nausea etc. Local NHS endo left me on no meds at all and refuses to help. TSH hovers around 6ish but T4 is below range and T3 about 4.8. I've got to the point where I can barely get out of bed and the fatigue is horrific. Sleep is also not refreshing at all. Had an appointment today with a private endo who says my symptoms are all textbook hypothyroid. He has prescribed Erfa NDT, as he said that T3 monotherapy does not give you any cover overnight due to short half life, but NDT will. I have just felt worse and worse since being diagnosed with hashi/overt hypo mid 2023. Can anyone tell me of their experiences of taking just Erfa NDT? I am hoping against hope that I can tolerate it. I am starting on 1/4 of a grain twice a day for 2 weeks, then up to 1/2 a grain twice a day for 6 weeks, then review. I would appreciate your responses about how this has worked for you and any side effects you may have had?
Written by
Fluffywardrobe
To view profiles and participate in discussions please or .
”T3 monotherapy does not give you any cover overnight due to short half life.”
Thing is, that’s not true. The half life isn’t actually that short! If you’re on enough liothyronine there’s no issue with it keeping you going during the night. So maybe you weren’t on enough?
You’re the second person today to come and ask about EFRA (it’s actually ERFA, a Canadian brand of NDT).
The dosing regime that’s been suggested to you is very sensible and in line with what we tend to say here, so happily, despite his inexperience with the half life of liothyronine, your private chap has got that bit right.
I’m on Armour, another brand of NDT. I had no issues starting it in exactly the way you’ve been recommended to do it, and have been on NDT now for more than a decade.
He said the half life of liothyronine was 4 hours? Which is what I also understand from Paul Robinsons books? ERFA spelling was a dyslexic blooper on my part. Oooops. Thankyou for your input. I have been on no meds whatsoever, as the NHS left me on nothing for over a year. I have only tried levo which made me so ill. Hence going private and this chap doling out Erfa, as I cannot continue feeling so very unwell and being ignored by NHS endos. Are you now free of hypo symptoms and well thyroid-wise?
For the most part, yes. I’m at that interesting age (menopause) where all sorts of things are happening to upset the status quo, but from a thyroid perspective I’m doing ok.
NHS so-called “endos” are often merely diabetes specialists. They tend to understand frighteningly little about thyroid disorders and are wedded to blood tests like TSH that don’t even test thyroid function itself. So many of us end up having to seek private help.
You are SO right about NHS endos. My NHS endo has only ordered TSH only bloods ahead of my next appointment. She'd have better luck monitoring my thyroid by looking out of the window with binoculars! It's going to be quite amusing watching her have a nervous breakdown when I tell her I've been prescribed NDT. I am also peri myself
I'm going to see my GP tomorrow. I will let you know her reaction. Have you met my endo??? She totally WOULD look through the wrong end of the binoculars! I have actually had my endo care moved to another hospital (she doesn't know that yet), but I know that the clinical lead for my county is very anti T3, he refused to see me privately as he said he had nothing to add to the sweet FA that the more local one has done. A bit of digging on google showed up a letter he'd written to the BMJ castigating them for having the audacity to advertise liothyronine and how very dare they. So I suspect that the new NHS endo will likely have a fit of a vapours on hearing I am on NDT when I see her in July (or T3 if it goes that way). If the NDT does work out, I will then have the unenviable punch up of applying to my local NHS ICB for individual funding for it
I am expecting a big battle, but open prescribing shows that there have been 10 prescriptions for Erfa NDT in my ICB area in the last 12 months, so a precedent exists
I just saw my GP. She is very supportive of me trying NDT, as she knows my local endos have done nothing. She is also happy to help me do a funding application to the ICB if NDT turns out to work for me later on
Not nice knocking the NHS GPS, I accept that there are some not up to the latest information who ended their training many years ago ( 50 or more) it sounds like you are struggling to get a doctor who will listen to patients who probably know more about their condition than their GP does as when it is you who are suffering with your condition and has to put up with it 24/7/365 all the GP sees is the 10/15 minutes of your appointment when I started on thyroxine I had just recently returned from 10 years in the Caribbean which my doctor had not taken into account when I reminded him he started me with a huge dose vitamin D 10000iu for a couple of months which helped so I continue on them at a lower dose, have you tried vitamin D to see if it will help they say that just about everyone in the UK should take it due to the small amount of sunshine that hits our skin I think it was due to being out in the sunshine for so long hit me quite hard but taking it every day has helped me a lot so give it a try it may help.Regards Poppy Ann.
Yes, perhaps the GPs in your area are good. The ones in my area are so bad they featured on a BBC news story recently.
For what it’s worth, the older GPs knew their stuff and remembered me from visit to visit. They’ve been replaced by part time and conveyer belt locums who use a paint by numbers approach to medicine and don’t want to see you as a collection of moving and interrelated parts. Don’t want to “see you” full stop.
Oh, and I am not knocking the NHS. My late husband was an intensive care nurse for over 25 years and I too was a nurse. It’s just there's not much left of the NHS now and what’s left isn’t fit for purpose.
Oh, and on the half life issue, although T3 is short acting, levels do build to a steady state over time if you are dosing consistently. It doesn’t fall away to nothing after a few hours but will keep to a base level.
That's worth knowing in case I do end up on T3. I am hoping I can tolerate NDT though. I am not the best at tolerating new meds for any ailment. I am nervous after how ill levo made me
Are your B12, folate, Vit D and ferritin levels optimal?
Low ferritin in particular can be the reason why it can be a struggle to tolerate thyroid meds.
Anyway… Half a grain a day (2 quarters) is a very low dose, so you should find that reasonably easy to tolerate. Here’s hoping this is a turning point for you.
Yes, B12 is over 1,000, vit D is 120, ferritin is 104. I have my ferritin closely monitored as I have iron infusions yearly due to it dropping horribly (thanks fibroid). I keep a good eye on my vitamin blood levels. Interestingly, the folate I was taking had cyanocobalamin in it, that stuff made me feel horrific after about 4 months. I prefer hydroxocobalamin for B12. I am currently off all B12 for a few months to try and get an accurate B12 blood reading. I REALLY hope it is a turning point too, as I have lost 90% of my life currently (unable to go out due to fatigue)
He's posting out the prescription (tomorrow I assume?) and then I have to contact the pharmacy he has given me and they need to send it through. So a week's time perhaps?
Jazz wish I would have know and given this very crucial information about Iron/Ferritin levels how very important they are for our Thyroid meds to work well for us. For the longest time more like years . I struggled to feeling well even with very high doses of T4. Experiencing palpitations irritability, anxiety, insomnia etc. No Dr ever flaged my low Iron/ Ferritin markers.
I can't make up this story of Dr's totall Ignorance.
I Bless The Very Valuable Informative Caring and Sharing Members that Taught me the Way.
I think your endocrinologist needs to get a bit more clued up on pharmacology, as he mistakes peak plasma concentration with half life!
When you take liothyronine, the peak plasma concentration is reached after around 4h, so this is where the maximum concentration in your blood is achieved and will then slowly go down over time as it gets used by the body.
The half-life describes the time interval that is required to decrease the concentration of a drug by half. The half-life of liothyronine is actually 1 day (versus 7 days of levothyroxine), so that means that if you take 5mcg of liothyronine, 24h later you will still have 2.5 mcg in your system from that dose, after 48h there is 1.25mcg of that initial dose left, after 72h there is 0.625 mcg left and so on.
As you top up after 24h (or in some cases people split their dose and top up more often), you will not suddenly run out of liothyronine, just the concentration in the blood can vary a bit. However, this means that you definitely will be covered at night and have liothyronine available, if you dose either once or twice a day! 😉
The half life of T3 is about 24 hours IN THE BLOOD. But what gets into the cells stays there for about three days. So, you've very well covered over-night.
I've been on T3 mono-therapy for years and have no trouble getting through the night. So if T3 mono-therapy is what you want to try, go for it.
Hello Greygoose, I hope you’re doing well! Would you mind sharing the dose of T3 you're using? I'm considering the possibility of monotherapy and would greatly appreciate your insights. Thank you!
I really don't think knowing my dose would be of any help to you. It all depends why you're considering T3 monotherapy. In my case it was because not much T3 was getting into the cells and I needed a very, very high dose to force some of it in.
Originally, I build my dose up to 225 mcg T3. But I doubt many people ever need it that high! Now, I'm slowly able to bring it down again, and at the moment I'm taking 50 mcg. Which, I think, is a pretty average dose of T3 for mono-therapy. However, I've been that low before, and had to increase it again to 75 because it suddenly become not enough. My needs seem to vary and I dose by symptoms. Blood tests are not that much use to me.
I used to be on T3 slow release (imported privately but on my GP’s prescription), 82.5 mcg, twice a day for over 25 years. I was well. Then, I moved and had to change GPs. They threw up their hands in horror and referred me to the hospital. Now, I’m on 125 mcg T4 and 20 mcg T3. It’s not enough.
However, I have an appointment with a private endocrinologist later this month and he comes with a recommendation from my sister, who takes Erfa. Please keep your fingers crossed for me.
Hello, I hope you’re doing well! Would you mind sharing the dose of T3 you're using also? I'm considering the possibility of monotherapy and would greatly appreciate your insights. Thank you!
I'm dosing with both T4 and T3 . After adding some T3 to my T4 mix bedtime best sleep ever.I found that T3 makes me sleepy and T4 is more my energy bunny.
For what it’s worth, Efra was a lifesaver for me. Levo didn't work for me and I didn’t tolerate T3 or combo. I’ve been on NDT for a few good years and it really has changed my life.
I have been on ERFA for over 20 years. It took more than a few months to get the dose right as it has to be raised slowly. It’s been adjusted up and down over the years but it was a game changer for me. My Dexa scans are great (important when taking NDT) and although my TSH is suppressed the T3 and T4 levels are excellent. My endocrinologist feels I am on the right dose.
It is an added expense but I am healthy and happy on ERFA. I hope you find this is the case for you.
How often should I have a Dexa scan once on NDT? I did have one about 8 years ago, so they have a benchmark. I am also on prescribed calcium and also vit D
Hiya I'm on erfa ( for last few years ) prior to that I was on nature throid and a few others until they became hard to obtain. Prior to that I had similar issues to you and tried every form of thyroxine possible . After 10 years of being ok ish on it things went AWOL. I also had a disastrous attempt at T3 only . I lost my thyroid to cancer over twenty years ago so have no choice other than to find the best substitute for life long replacement.
I love erfa and hopefully you will too . I swapped thyroxine for the equivalent dose , and within 6 weeks settled on 2 grains and it's never wobbled. My blood tests are constantly good so even my GP has been happy as the proof is there !
Good luck , hopefully you'll get up to your optimal dose soon. 😊
Well I read years ago when researching options that pig thyroid is the most akin to ours and in taking NDT you get the benefits of the whole gland including calcitonin. Obviously you wouldn't get that with synthetic replacement. I feel the benefit of that, hopefully you will too ! Let me know how you get on. 🤞😊
I saw Dr Zachariah via phone. He is also an NHS consultant in the Surrey area. I don't yet know the cost of NDT as I haven't got the prescription yet. I don't think every private endo will Px NDT. I tried to see a more local private endo and he refused to see me and said he couldn't add anything further to the sweet FA the local one had don (He was not prepared to even prescribe T3, let alone NDT)
I’ve been on Erfa NDT for 20 years. I also have Hashis. Very experienced with it. The key is to not stay at low dose for too long. Or you will end up more hypo and be back to where your started. Try raising slowly every 10 days until your reach 2 grains 120mg. You could take half in a the am and half 6hrs later. . Also support your adrenals they work together. A adrenal cortex is helpful. Bovine. If you can’t seem to raise support the adrenals. Hold the dose for 6 to 8 weeks and retest you may need to go up a bit more with the NDT or add in some T3. I’m currently on 150mg 2.5 grains
NDT should be full thyroid replacement. Between 2 to 3 grains is where most ppl get depends if you need to add in T3 etc Test RT3 (should be under 12) and Free T3 (top quarter of the range) Free T4 can be lower when using NDT. Any T3 can lower the t4. This normal as well. Want to keep T4 midway or under. T4 is a storage hormone anyway. I focus on T3. It’s the one that makes us feel good and needed for our cells.
Rt3 this will help see if your conversion rate is good..
I also find the 30mg tablets to be the best. The 60mg tablets have been not consistent for me. I get my prescription filled always with the 30mg.
That is helpful thankyou. My 9am cortisol is fine, so no adrenal issues. The dr has told me quarter a grain twice a day (5 hours apart) for 2 weeks, then half a grain for 4 weeks, then review. If you get it prescribed in the UK, how much did it cost?
I was fine with cortisol as well. Nothing to do with That. Cortisol goes up and down all day. I find the am cortisol doesn’t helps with seeing how your adrenals are. We also need t3 to make cortisol
For me i needed to add in adrenal Cortex then had no problems raising.
Without it. Yes i did get hot and sweaty. Since my adrenals were weak from being hypo for so long. Also common with Hashis. We don’t do well with stress. Also Being hypo we get used to low heart rate. Just takes a while for your body to adjust to not being in a hypo state. My blood pressure is perfect. If you are in Canada you can order “throne adrenal cortex” off iHerb, it has one ingredient.. just to make sure get the right one. there is no adrenaline in it which you don’t want in other brands..
I'm in the UK. My resting heart rate is fairly fast. 48hr ECG showed no issues. Do you have to stay on the adrenal cortex for good? Or was it just during the dose raising transition period?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Endocrinologist changed my NDT Brand -Help ! 
How do i start to add T3 to NDT safely please
Erfa (or any NDT) overdose advice
First results after switching to NDT. Help pls ... 
Help! Confused with Erfa/Levothyroxine dosage
