Should I try ERFA or stick with Nature Throid ? - Thyroid UK

Thyroid UK

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Should I try ERFA or stick with Nature Throid ?

Avidreader profile image
39 Replies

I’ve been on 3 grains of Nature Throid since last October ( started in 2 grains ) - but since December slumped ( after feeling amazing since 21 years on Levothyroxine feeling crap ) ! But since December I’ve had excruciating pain in left shoulder ( my Endo says he sees a lot of this ) ltd movement & now in both shoulders plus hair loss & cognitive slowness gritty eyes - all disappointing after feeling great for a while - Endo suggests trying ERFA but I see it contains milk, sugar and corn starch !! I’m

On AIP protocol - any suggestions please ? Shoulders are bad and upper arm weakness almost worse than on Levothyroxine?

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39 Replies
Jazzw profile image
Jazzw

Was it definitely December when you started to slump? Could it have been a bit later—like Jan/Feb time?

Have a read of this: healthunlocked.com/thyroidu...

Now, since receiving more recent batches of Nature Throid, I’ve been fine again. :) So when did you get hold of the batch you’re currently taking?

Framboise profile image
Framboise in reply toJazzw

Wow can I jump in here too Jazzw! Do you know the batch number of the Nature-Throid that you didn't think was so good? Or the batch number of the more recent ones that are better? I'm gradually not doing well despite increasing my dose 3 months ago, my FT3 has gone down on the higher dose. The batch number of mine is 028213-18C07 expiry 28.2.21 and I've been taking it for 3 months, the previous batch was 01824-18B14 expiry 28.2.21 and I took that for the previous 3 months. As you're now feeling ok on it, it would be good to think it's a batch problem.

Avidreader profile image
Avidreader in reply toFramboise

I also have read this ! Just to add to the cocktail ! My shoulders as I’ve said are excruciating holtorfmed.com/can-thyroid-...

Avidreader profile image
Avidreader in reply toJazzw

Oh blimey ! I’d need to rack my brains ! I try to keep a thyroid diary - it was probably January actually !!! Because I put it down to relaxing the AIP DIET a bit over Xmas - so I will read this with interest - thanks so much - I’m in . Agony with shoulders - yelping ! 😩it’s so disappointing xx

wellness1 profile image
wellness1 in reply toAvidreader

That sounds miserable. I hope you find ways to make yourself more comfortable until you sort your thyroid hormone treatment. For me it's hip pain. Never had any joint pain whatsoever but as I increased Levo, my hips began to ache. That symptom completely resolved after 2 weeks on NDT, but has now reappeared. I also thought I was feeling worse because of other factors, but the return of hip pain made me think it's down to the Nature-throid (confirmed by labs). Hope frozen shoulder is easily reversible with the right treatment!

Avidreader profile image
Avidreader in reply towellness1

So if it’s down to Nature Throid ( which I think it must be ) what should we do or take !??? 🤣my arms are weaker than when on Levothyroxine & yet my legs are better !

Avidreader profile image
Avidreader in reply towellness1

When you say confined by labs (that it’s Nature Throid ) what have you done to resolve ?

wellness1 profile image
wellness1 in reply toAvidreader

I am trying different brands of NDT to find one that suits. I know fillers are a concern, but have you considered this?

Avidreader profile image
Avidreader in reply toJazzw

I can look at my bank statements to see when I bought it ! But yes it was probably after January 2018 - so do you know that the manufacturers have changed the mix ? 🤔

wellness1 profile image
wellness1

Following this conversation with interest! Sorry you're developing symptoms on the new Nature-throid, Avidreader . I'm in the same boat and share your concerns about the fillers in ERFA and issues with other brands. Agree with Framboise -- it would be lovely if it's a batch probem, curious about the batch number Jazzw is finding to be effective. I have a stash of batch 038264-18D18 expiry 03/21 that I wonder about. May look into getting something more recent, rather than try another brand. Good luck. :)

Avidreader profile image
Avidreader in reply towellness1

In reading Amy Myers book she did say that some patients autoimmune may “ Attack “ the Nature Throid or other drugs 👀 words to that effect - I hope that is not what is happening to us ? I felt amazing in the beginning like a light bulb switch on - but a lot of that o think is also cutting out soy and dairy etc on AIP ? 🤔

wellness1 profile image
wellness1 in reply toAvidreader

I'm familiar with the concept that the thyroglobulin in NDT could trigger an autoimmune response in people with Hashimoto's.

thyroidpharmacist.com/artic...

amymyersmd.com/2017/07/whic...

Pretty sure that's not what's happening with me. I assume you would notice a reaction shortly after starting NDT and I think it would be reflected (broadly) in your antibodies. Have you tested your thyroid antibodies before and after starting Nature-throid? My antibodies aren't increasing but since starting the new Nature-throid my symptoms are worsening and my FT3 has tanked, so for me, that's the Prime Suspect. :) There are a lot of variables (dietary changes, as you mentioned, being just one) and we're often working on things simultaneously in an effort to feel well so sometimes it's hard to know for sure what's helping and what's causing a problem. And even when you think you've identified the problem, there's figuring out what to do about it!

Hope this makes sense. Feeling muddled and finding it hard to put together coherent sentences... gee, I wonder why? ;)

Avidreader profile image
Avidreader in reply towellness1

This is a brilliant reply & I find comfort from not being alone on this !

I’m afraid I’ve never had

MY antibodies tested -but I’m

Planning on going to do so with Medichecks

wellness1 profile image
wellness1 in reply toAvidreader

:) It's possible that being on AIP has reduced your antibodies. Mine fell when I went gluten free. Still a bit above range, but moving in the right direction.

Avidreader profile image
Avidreader in reply towellness1

Can our antibodies be tested on NHS ? Or do we have to pay for the Medichecks each time ? I’m forking out lots here with my NDT etc

wellness1 profile image
wellness1 in reply toAvidreader

I've only tested mine privately. I've read lots of comments on the forum about GPs not testing antibodies, but some GPs/endos do it. For example: healthunlocked.com/thyroidu...

So it's probably down to the individual GP.

Avidreader profile image
Avidreader in reply towellness1

I will try to look at batch no. But I tend to decant into handbag etc so I have them in many places ! Bed cabinet etc - it’s hard sometimes to have an empty tummy as well as on AIP diet I tend to eat something every 3 hours or so 😘

Avidreader profile image
Avidreader in reply towellness1

Thing is - we are paying a lot of money for these drugs ! I have quite a stash and I don’t know what to do ! I’m thinking to change & try WP as it seems to get good reviews on here ! ( but then apparently it’s not available yet ?) I just wish there was 1 decent dr. To sort me out ! I do pay an Endo but he doesn’t seem to know as much as you lot on here ! 👀

Jazzw profile image
Jazzw

Avidreader Framboise wellness1 Stupidly, I don’t think I’ve got the bottle from the batch that made me unwell any more. Because to start with, I thought it was me getting worse rather than the Nature Throid being ineffective. So that’s not helpful at all, is it? All I can say is that when I switched to a batch of 2 grain tablets (it was definitely a batch of 1 grains that seemed to be defective) I started to feel a lot better. Sorry guys :(

Avidreader profile image
Avidreader in reply toJazzw

Am I being naive ? Surely the manufacturers have standards etc to keep batch up to scratch ? 🤔

Jazzw profile image
Jazzw in reply toAvidreader

They do - but even the tightest controls fail sometimes. There have been many many dodgy batches of levothyroxine over the years.

Alternatively, I was provided with fake NDT. Always a possibility, I suppose, but I don’t think so - I trust my source.

We know that RLC did change their source ingredients, and that they were under pressure to restart production.

I don’t know what to think. Thankfully, whatever it was seems to be resolved, for me at least.

wellness1 profile image
wellness1 in reply toJazzw

Thanks for the info, Jazzw . I'm not sure what to think, either. But it helps to know what other people are experiencing. Glad you're feeling better.

alannalifts profile image
alannalifts in reply toJazzw

Glad to hear that this issue has been resolved for you :). Would you mind sharing the batch number of your good Nature-Throid? I'm currently doing meh on a 2 grain batch (Lot # 038233-18C30, Exp: 03/2021). I'm not sure how the batch numbers change over time, but it looks like my batch might be in between those of Framboise and wellness1 . I ordered it at the end of April and have one more bottle of it, unfortunately... at least it semi-works.

Avidreader profile image
Avidreader in reply toalannalifts

I’ve JUST started this batch - oh it seems I can’t put a photo on this feed ? NDC 64727-3300-1

Avidreader profile image
Avidreader in reply toalannalifts

When You say 2 grain is that 1 pill of a two grain ? Or 1 grain twice a day ? 🤔

alannalifts profile image
alannalifts in reply toAvidreader

Avidreader - when I say 2 grain batch, I mean that each tablet contains two grains :). I was taking 3 grains split between AM and PM, so I was chopping the tablets into halves and quarters with a knife to get the correct dose.

Avidreader profile image
Avidreader in reply toJazzw

Im Having physio on my shoulders ( more money !😩) but they are so painful affecting my sleep & movement - very clunky too ! I don’t know what to think - but I don’t feel

Like changing from Nature Throid - and maybe upsetting my body more ?

Framboise profile image
Framboise

Avidreader Jazzw wellness1 alannalifts I received my latest Nature-Throid today and it's from batch number 058300-18G04 expiry 31/05/2021. I wish I'd read Jazzw's comment more carefully about the 2 grain tablets, but didn't, so these are all 1 grain tablets just like all my other batches. I'll start them tomorrow to see what they're like and let you know what I think. At the moment my returning symptoms are those of too much T4 and not enough T3, similar to how I was on thyroxine alone - stiff fingers, painful tendons, random cramping of feet (when driving), ankles (when sitting and flexing them) and legs (at night), and this week that awful shaking inside for a few days.

Avidreader profile image
Avidreader in reply toFramboise

Here’s wishing you better - I’ve noticed my feet are freezing g at night ( a new thing) gritty eyes , hair loss , and both shoulders stiff painful limited movements - swelling if I eat anything off of The AIP REGIME - went to two birthday parties at W/e couldn’t even eat Gluten free cake 😩

Framboise profile image
Framboise in reply toAvidreader

Thanks Avidreader, I hope you feel better soon too. Thinking of freezing feet - during our gloriously hot summer I still needed the electric blanket on for all but three nights. My husband moved to a cooler room!

Avidreader profile image
Avidreader in reply toFramboise

Noooo ! Really ? I actually put our duvet away ! First time ever ! We just had a sheet & thin waffle cotton blanket 😊but the feet comes on every evening !

wellness1 profile image
wellness1

I hope you do well on the new batch, Framboise !

Framboise profile image
Framboise in reply towellness1

Thank you wellness1 :)

alannalifts profile image
alannalifts in reply toFramboise

Hope you are doing better as well! I jumped shipped and am transitioning to Thyro-gold (currently taking Thyro-gold for my AM dose and Nature-throid in the PM) and seem to be doing better - however, it's only been a week and a half so far, so I'll have to see how I do on it longer term.

Framboise profile image
Framboise in reply toalannalifts

That will be interesting, please let us know how you do. I'm still the same at the moment on the new batch but still only taking half of each batch, will switch completely next week.

Avidreader profile image
Avidreader in reply toFramboise

I’m on a new batch Nature throid from Uk special pharmacy - but still pettering out by 4pm & shoulders arm excruciating 😖 phoned pharmacist but he says he can’t get WP - he said he’d phone me back but he didn’t - even tho I spend lots of money there !

Avidreader profile image
Avidreader in reply toalannalifts

And how are you doing on the new mix ?

alannalifts profile image
alannalifts in reply toAvidreader

Hi Avidreader - sorry for the slow response! I will send you a message about Thyro-gold. It is available over-the-counter, so it's also easy to find the company online and buy directly from them. I felt better switching partly over to Thyro-gold, but still had a lot of grogginess in the morning when I first woke (and my PM dose was Naturethroid), so I've switched over completely to Thyro-gold now. I'll order labs privately in 6-8 weeks to check my thyroid hormone levels.

Sorry to hear your pharmacist hasn't been communicating with you, but it's highly unlikely he'll be able to obtain WP Thyroid, as RLC Labs isn't producing any at the moment (and hasn't since early 2017). You can check for updates here: getrealthyroid.com/product-...

Avidreader profile image
Avidreader in reply toalannalifts

Please dm me where you get thyroid gold ?

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