I started a trial of ERFA, a couple of weeks ago after, at last, seeing an Endocrinologist following 30 years on Levothyroxine which wasn’t working.
I wonder if anyone here has had any experience on ERFA?
I realise that it might take ages to feel any benefits but within a few days the dizziness that I have suffered every morning when getting out of bed has vanished!
It’s the same with the palpitations! I’ve suffered these for 30 years and during that time been sent for various heart tests only to be told everything is normal.
Can it really be that simple?
I wasn’t expecting miracles!
The only downside so far is that once or twice I have felt tummy pain/ nausea but only for an hour or so….I don’t know if this is connected?
I’m still taking Levothyroxine in the mornings but a reduced dose, either 50 or 75 on alternate days but now take ERFA 30 at night.
I’m really hoping that this can help with weight loss too but am not changing my way of eating at the moment so that I can do a fair trial…I always eat healthily and very little anyway.
I’m also on Ramipril for BP although that is well managed.
I just thought I would share my experience so far but any advice or comments would be very welcome.
Thanks
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aliwt
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There are many, many posts about Erfa. It appears less accessible to members than was once the case, hence possibly fewer taking it than a few years ago.
When you say that levo 'wasn't working', I doubt it was the levo at fault - it's a hormone, how can it not work? It's not like a drug. But, levo is a storage hormone, that doesn't do very much until it is converted into the active hormone, T3.
The problem is, not everybody is very good at that conversion. If your body can't convert the levo to T3 very well, then you stay hypo, with all the hypo symptoms. But, that is not the levo's fault, that is your body. It happens. Often.
Erfa is made from whole pig thyroid, so therefore contains a certain amount of T3 which your body is lacking - has been lacking for many years. The T3 is obviously having the desired effect of getting rid of your symptoms. So, yes, very often it is that simple.
What is more difficult is getting rid of the hypo weight-gain. Because is likely to be water-weight, rather than fat. And, water-weight can be very difficult to get rid of, I'm afraid. Even when you're optimally dosed on T3. So, hope for the best, but be prepared for the not so good.
Hi there , just to say I'm on Erfa , equivalent to 2 grains and doing fine. I've been on NDT for about 5 years after 10 years or more of thyroxine. Endo was never keen on me swapping but agreed to monitor me and advise. They quickly saw that blood tests clearly show it works and being without a thyroid I like the idea that I'm replacing more of the elements my natural thyroid would have had!. I hope you continue to improve.
Thank you so much Amanda. I’m so pleased to hear good reports. Sometimes everyone seems to have such negative things to say. I know all this is a battle but hopefully we will continue to improve.
It really is and I think what I've learnt is were all individuals and what works for one doesn't necessarily for the other! Take care, it's good that we've got this forum for support if needed! 👍😊
Hi,I am getting on ok with ERFA and am gradually cutting down on Levothyroxine. At first, I felt a lot better within days but it’s all a question of tiny alterations and then waiting to see how I am?
I’m definitely better with ERFA than without.
I just wish I could shift this extra weight! I had hoped that ERFA might help but not so far!
Glad to hear you are doing better with erfa. This weight thing is a real problem for so many is so terrible that our thyroid affects our bodies so many important organs. Beside the weight gain mental fog and few other symptoms, I worry about hair loss -anything with this at all?
When I switched to NDT only from taking 125 mcg T4 - Levothyroxine and I did find the transition easy and it was " that simple " for me.
I'm now 3 + years in and take NDT only and am so much better and my weight slowly reduced over the first 18 months and was a bonus prize.
No thyroid hormone replacement works well until you optimise ferritin, folate, B12 and vitamin D and if necessary you may need to keep supplementing these core strength supplements long term, depending on your own health issues as to why became hypothyroid.
I'm with Graves post RAI thyroid ablation and now managing lingering Graves, thyroid eye disease and hypothyroidism and much improved doing it for myself and monitoring my own thyroid hormone levels.
Thank you for your positive feedback. I wish you good luck with your continued journey. I have learnt so much from this forum. I have only really been on the case for a few weeks after 30 years of acceptance that I didn’t ever feel well on Levothyroxine! I’m just trying to sort out my vitamins etc now. I seem to have a very high Ferritin level, not sure why? I’m having more blood tests in 6 weeks time.Fingers crossed for weight loss!
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