B12 help: hello everybody, please... - Pernicious Anaemi...

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B12 help

Antstarr profile image
17 Replies

hello everybody,

please can I have some advice.

I've been on self injections for almost 6 years and I use Panpharma brand hydroxy. I did really well and I healed the majority of my neurological symptoms. I was finally feeling like my old self again. I know that most of you are aware that Panpharma has had a raw material supply issue, I was told that they get their material from China, and China had a recent lockdown, further hindering stock. I have been in contact with Panpharma on multiple occasions. I feel like they are a bit cryptic. I'm told that they haven't discontinued the brand despite Whisperings that they have. The company cannot give a timeframe of when the item will be back in stock.. I am just told it's likely to be a long-term issue- Hence, the confusing part, it doesn't really make sense. Anyway, the reason for my post today is because I've tried many different brand Hydroxycobalamin; Pascoe, hervert and Arnika apothoke's own brand. All of them caused my symptoms to return. I started going backwards. A few B12 Sufferers that I know have also said that this happened to them and they were all previously on Panpharma brand. I don't know what's happening, when I speak B12 literate persons they tell me that it's not possible for this to happen/all B12 is the same. I'm panicking. I'm really hoping that Panpharma get some stock in soon. Can anybody advise me please. Why doesn't my body except the other brands of B12?

Thanks.

Aurora.

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Antstarr
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17 Replies
wedgewood profile image
wedgewood

I have been a member of PAS . and reading posts daily on this forum since 2014 and I’ve never heard of a case like yours . I can only suggest that you try Panpharma B12 Cynocobalamin B12 . which is available . from versandapo.de and also from apohealth.de

This type of B12 is what is the usual one that is prescribed in USA , and was also used here in U.K. until a few years ago . It probably needs to be injected more often than Hydroxocobalamin. A member called Clivealive finds this is the B-12 that suits him . I hope that you can benefit from Cynocobalamin . Best wishes .

Antstarr profile image
Antstarr in reply to wedgewood

hello, thank you for the response.

I actually purchased cyano ( Panpharma brand) recently and I'm yet to use it. I did inject with this form in the beginning but I found methyl and hydroxy worked better for me. In fact, methyl was the only form that reversed my eye symptoms.

That's actually reassuring that you've never encountered a case like mine, it gives me hope.

Thank you.

Aurora

B12life profile image
B12life in reply to Antstarr

where do you get the methyl and when and how do you use both the hydroxo and methyl. I have trouble with my eye sight, which did improve a little with cyano injections I have been doing, but lately got worse. It's hard for me to tell if it's just age or b12. :). But if I try some methyl and it improves or not, then I'll know.

Antstarr profile image
Antstarr in reply to B12life

Hi there,

I get my methyl From a German pharmacy. There's also a place here in the uk called Oxford bioscience. They sell the powdered form which you mix with saline.

I inject hydroxy everyday in the morning and I inject methyl every day in the evening.

I hope that helps

Thanks.

B12life profile image
B12life in reply to Antstarr

it does. Thank you!

Antstarr profile image
Antstarr in reply to B12life

did you want the links to the pharmacy?

B12life profile image
B12life in reply to Antstarr

sure. both. just in case the german one doesn't ship to US. some do though.

lynxis profile image
lynxis

I have had a few panicked days/weeks over the years of thinking, "It isn't working anymore!" They have all resolved eventually. (I have to inject every day to keep neurologic symptoms at bay.)

It is worth noting that I perceived that Hevert didn't work as well for me, so much so that I let an entire box go to waste, even though it was expensive. It could have been a bad batch. I'm in the US, and B12 can't be exposed to extreme temperatures. It's hard to say what the B12 has been through in its (sometimes very long) journeys to us. I've also had batches "go bad" before their expiration date, again maybe likely due to temperature fluctuations during moving and in the seasons before I've turned on the heat or AC. I panic thinking my regimen isn't working, and then I switch to a different kind or box and it's fine again. Heartbreaking to throw out such an expensive, sometimes hard-to-find substance, but we do what we have to.

My neurologic symptoms get worse when I'm under a lot of mental or physical stress (illness, lack of sleep, etc .) They get worse when I'm not minding my co-factors. I'm tingling this very moment because I'm on vacation and up too late. The worry about the symptoms makes them even worse, I'm sure.

All of this to say that I've been where you are, in that panic, and it's gotten better for me, every time, eventually. It's scary, though. We all likely have trauma from being so sick and scared, and when those symptoms return, so does that trauma.

Lastly, you didn't mention how frequently you're injecting, I don't think. It is within the realm of possibility that you have just reached a point where you need more frequent injections, or a higher dosage. That has happened to many of us, as well.

Antstarr profile image
Antstarr in reply to lynxis

Hi there,

Thank you for taking the time to respond. Sorry that you've had similar/ currently experiencing neurological symptoms- I hope you're able to enjoy the holiday somewhat.

Frequency of injections: I inject daily and I have done so for almost 6 years.I healed the majority of my symptoms last year and have felt great (for the first time in a long time) that is why it's been really frustrating to deal with this again.

Hervert: I agree, I found this to be very weak and it didn't help me. The same with pascoe brand. I have found the B12's that have the stronger dosage- say 1500, feel weaker. I purchased the 100 box of Pascoe brand B12 last year, and ended up having to be refunded as it didn't work, it actually caused all my symptoms to come back. I've ordered from different pharmacies since then, the same thing has happened. I really don't feel good on the other brands and it's so frustrating.

I am cautious of the heat also. I often worry that the item has been therm damaged in transit but I really do feel like my body just doesn't like the other forms.

Thanks again

Aurora.

Cherylclaire profile image
CherylclaireForum Support in reply to Antstarr

Strange that you find Pascoe to be weaker, as it is 1.5mg in 1mL, stronger than the Panpharma, at 1mg in 1 mL.

I did find that changing to Pascoe made the "loading spots" come back - may have been because the Panpharma I was using previously had become out of date. Not everyone got the spots with initial loading injections, but a fairly common side effect.

I also noted (and was told !) that although I had more physical energy, I was more irritable and argumentative - but this could have easily been due to not being used to dealing effectively with new-found energy level.

There has only been one change in what I do - I have now left a three-day gap between injections, where I only left a two-day gap with Panpharma. This is because of the additional B12 in each ampoule. I seem to be getting more used to it and calming down now.

Yes, stress and recovery from illness seem to be the biggest drain on B12, and in both cases, I have found it useful to up the frequency for a week or two. Covid I found was the worst drain, but have also found that antibiotics made me get constant headache and bad vertigo - this occurred a few times and with different brands. Worth looking at what else you are taking (if anything) as some medical products can deplete B12.

Just mentioned this in case there is another reason for your current problem.

I really hope you can find an alternative brand that suits you. Wishing you luck.

lynxis profile image
lynxis in reply to Antstarr

Ah, it sounds like you're well aware of all the possibilities. I'm sorry you're dealing with the return of symptoms. I hope you find something that works better soon, and I hope for all of our sakes that Panpharma gets back in business soon!

As a side note, I've been injecting daily for over 3 years but haven't noticed any improvement for a long time, and I actually seem to have regressed with my neuro symptoms. (I used to be okay skipping a day sometimes but not anymore. I am toying with the idea of increasing my dosage, even.) It was good to hear that you were still improving up to the 5 year mark!

Antstarr profile image
Antstarr in reply to lynxis

thank you 🙏

Yes, let's hope Panpharma get on top of the raw material supply.

Have you thought about trying a different form of B12? What are your worst symptoms?

I had terrible eye symptoms and the B12 deficiency caused optic nerve swelling. Only methylcobalamin reversed my eye symptoms. I actually spoke to Dr Chandy and he was the one who told me that for visual symptoms methyl is the preferred form- it really helped/ hence why I take two different forms of b12.

Hope that helps.

Take care

Aurora

lynxis profile image
lynxis in reply to Antstarr

That's very interesting! Right now I alternate between cyano, hydroxo, and methyl, but soon I will be down to cyano alone because it is by far the easiest for me to get in the US. (The place I got methyl closed due to COVID, and then there's the Panpharma shortage, but I can get cyano easily and more cheaply from Canada.)

Nackapan profile image
Nackapan

I have had many brands of hydroxcobalamin. Only one didn't suit me.

It had different additives in it .

Accord in the

UK is made by panpharma perhaps an option.

Gerot and lannoch

Neo Cytamen

I've used with success .

Not tried any others yet as still have stock .

Antstarr profile image
Antstarr in reply to Nackapan

oh wow!

I had heard of accord it's the one the GP's use but I don't think I can get that without a prescription can I? Do you know if places like Versanapo or apo health stock It? And Panpharma make it? That gives me hope.

Which Brand didn't work for you? Somebody mentioned to me about additives and I did wonder if that was why the other brands

We're not good for me.

Thank you for the information- much appreciated.

Aurora

Wwwdot profile image
Wwwdot

Hi Anstarr

I hope to in find a solution because it must be a worry for you.

I am new to all this so forgive a rookie thought if it’s of no help. Are the base liquids in which the B12 is dissolved the same for all brands? I was wondering if it could be the base that’s the issue?

All the best please keep us up to date as I have learned so much from this post! 🤗🤗

Antstarr profile image
Antstarr in reply to Wwwdot

Hi there,

Thank you for taking the time to respond- much appreciated. All questions are welcomed and important- it's how we learn :)

That's a very good point about the base liquid, I didn't think of that. I often wondered if it was the fact that some B12 has more additives and preservatives in.. who knows. There is still so much we don't know about this vitamin and much more research needs to be done.

Thanks for taking the time to share your observations with me, it helps a lot.

Thanks

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