NP Acella Issues?: Hiya I only pop in here now... - Thyroid UK

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NP Acella Issues?

Girlscout2 profile image
10 Replies

Hiya

I only pop in here now and then (treatment by and large having worked, and cracking on with what once seemed but a distant dream, normal life :-) ) so forgive me if you're already on this, as did search.

Have you spotted that Jamie at STTM is saying NP has gone to the dogs? stopthethyroidmadness.com/2...

Is this a baseless panic or are there actually issues, I need to reorder, and have been having some gynae issues (just had a op) that there's a lot going on in my body right now and can't quite see the wood for the trees, but don't want to order this new batch of NP if it's duff? Anyone?

Also, having had to ditch naturethroid due to reformulation nightmare, I'd not considered WP, but I see it's back, how are people doing on that? I've never tried Armour either but open to ideas here.

Also my endo (shockingly, she's rather straight laced) told me about Thyrovanz, but because I'm thyroidless, I didn't really fancy risking the rollercoaster of dosing it, anyone one that, how does it compare?

Thanks in advance for any intel, I live in dread of being forced back on synthetics, I'm not being hyperbolic when I say I'd truly rather die than take that sh*t again!

Cheers

GirlScout

x

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Girlscout2 profile image
Girlscout2
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10 Replies
Gingernut44 profile image
Gingernut44

Hi, I don't know anything about the meds you have mentioned except Thyrovanz and the only thing I know about that is from their Facebook group. You could try joining that to get the lowdown from people already taking it. Perhaps someone will come along with advice regarding the others

Girlscout2 profile image
Girlscout2 in reply to Gingernut44

Thanks, yes I've done that, and emailed HQ, it's a real NDT, just not licensed as a medicine, and have been given a rough conversion per grain by them, there are some thyroidectomy patients in the group so just waiting to talk to them. My endo is proper Establishment so she wouldn't have mentioned it as an alternative (I'm TSH suppressed for thyroid cancer) unless she knew it was effective, but just nervous of the change over period. But the idea of no supply issues does appeal, as does bovine, as there's clearly some issue going on somewhere with porcine powder atm. I'm so fed up of the constant ups and downs us patients deal with, it's hard enough dealing with this illness without constantly feeling distrustful of the drug that's supposed to get you better. Thanks x

AKatieD profile image
AKatieD

Hi Girlscout2.

I have the same issues having left Naturethroid at Xmas after feeling deathly. I switched to NP and have just got a batch delivered. They do look like the STTM describes - thicker, spotty, darker. I am a bit worried about taking them as don't want to end up like before.

As you say I don't want to try something where you have to take months to get the right dose as I can't stand feeling unwell for that length of time so not really interested in thyrovanz.

I have high reverse t3 and mid levels of t3 and t4 at last check, so I am switch over to some t3 which will be more reliable in terms of content and hoping that a lesser amount of dodgy NP won't then have too much of an effect.

Girlscout2 profile image
Girlscout2 in reply to AKatieD

Hiya

Thanks, yes took me a looong time to work out it was the naturethroid as I'd been stable on that for about six years, I got massive adrenaline problems and weight gain, felt awful. I've never felt quite right on NP, but as I say also had a lot going on with gynae issue (so heavy periods, so lots of iron loss) so it's been hard to see clearly what might be triggering what.

I could not tolerate synethics, even on high dose T3 + T4 (with blood results identical to the ones I have now on NDT) I had torrential hypo symptoms including crushing constipation (it's hard to describe the misery of one poo a week, but dear God I had that for 18 months), and I was nearly entirely hairless, shook continually, was full of water, couldn't think etc. My then endo (who was fantastic, if only off the record) said 'the only thing that works in patients like you is NDT, I'd lose my job if I said that now'. In fact she did also tell me about a 'bovine from NZ cows' but she couldn't remember the name, so I'm giving thyrovanz a proper look.

Good luck on the T3, I always found synthetic T3 really 'harsh', it's hard to describe the sensation, but switching to natural was like going from night to day, which is why I'm so upset that we might all be pitched back into this instability nightmare, it's so unfair.

Will keep everyone posted if I find out more

x

AKatieD profile image
AKatieD in reply to Girlscout2

Best of luck! You really don't need that misery again!

It does not seem like any ndt reliable at the moment due to problems with the supply of powder they use to make the pills. I really hope they sort it out soon!

Had not realised that about T3 so will see how it goes and will be interested on how you get on with the Thyrovanz

Girlscout2 profile image
Girlscout2 in reply to AKatieD

I think it's a porcine powder issue too, I'm not one for conspiracy theories, sounds like a cock up. And we're all different, some people do great on T3, alas I wasn't one of them!

Thyrovanz, I'm just looking, I might just get some as a plan b should the apocalypse occur! That's of course if Brexit doesn't create a massive issue with goods coming in from abroad, then we're all stuffed.

x

AKatieD profile image
AKatieD in reply to Girlscout2

Oh god, dont even go there with Brexit

Girlscout2 profile image
Girlscout2 in reply to AKatieD

Haha, I live in the EU for six months a year (I'm here now watching all this from afar), it is my waking obsession!

Sunnysky5 profile image
Sunnysky5

I have been on thyrovanz for several months and I feel better than I ever did before on Synthroid. The FB group is good for more info on dosing but you'd switch over to whatever was closest to your current MG for NDT is.

Girlscout2 profile image
Girlscout2 in reply to Sunnysky5

Thanks, yes now in the FB group, I notice some people without a thyroid need significantly more than their 'equivalent dose'. And I'm glad you feel better, levo to NDT was night to day for me too (which is why it's so monumentally frustrating to find there are problems with nearly all the porcine brands!). Thanks for replying x

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