Where can I get Hydroxocobalamin? - Pernicious Anaemi...

Pernicious Anaemia Society
19,220 members13,307 posts

Where can I get Hydroxocobalamin?

My doctor is still going to test me before he will give me my B12. I have PA and have been on injections every 12 weeks. My levels are high. So my doctor is withholding my B12 until my levels come down.

He said he was going to look and see if it was safe to have the injections with high levels. But so far he has done nothing. So I would like to get my own B12 and inject myself. I just need a reliable source.

39 Replies
oldestnewest

I get mine from a German site Versandapo.de. The site is in German but people on here will tell you what to put in. Hydroxocobalamin ampoules for injection come in either 10's or 100's, with a long use by date. The postage is the same however much you buy.

I have bought twice from them and found they posted quickly.

There are several sites that others use, and wedgewood is the expert on them.

Re your GP - he sounds rubbish, the NHS Guidelines says testing after treatment started is not necessary (because levels would be high) and you can't overdose on B12, being water based, any excess is peed out. *see Stichting B12 Tektort - pinned on the right of this page.

Good luck with your self injections.

Reply

Thank you. I have missed one injection so far. And my skin has broken out in a rash. I never suffer from skin problems, I wonder I it is due to not having my B12. If anyone has information on this I would be very grateful.

Reply

Is it a rash or spots?

Reply

It seems to be both. I saw the nurse today and she gave me betnovate. It isn't working yet.

I have just been on the Versandapro site. I managed to find what I wanted, but could not get it in my basket. I put in Google translated, but it did not work. It's me, nothing else. I will keep trying.

Reply

I had spots too, never having had even one spot before, just a few and luckily not on my face. They went away and I have not had any more. It has been suggested that B12 deprived bacteria are having a feast - or something like that.

Sorry I can't help about the basket transfer.

Reply

Did your rash burn and feel like pin pricking?

The nurse said it looks like a Sun rash. But I don't sit in the sun, and my face does not have a rash either.

So it could be the same.

Reply

A,wee question, I ordered from there too but my order still hasn't arrived. It must be a good two weeks now. I live in Scotland and wondering how long others wait on delivery? Thank you

Reply

I'm surprised, both of mine came within a week. Does it have tracking so you can see what has happened.

Reply

I'm just going to check it tonight, thank you x

Reply

Hi, I have checked my bank account and payment doesnot appear to have come of. Can you give me website details please and I will order again , thank you beginner1 x

Reply

I just put in VersandApo.de and hope for the best.

wedgewood has much better information on one of her posts. It is titled Info. about obtaining b12 hydroxocobalamin ampoules

Hope that helps.

Reply

Hi I live in Scotland too. Mine arrived via dhl in 48 hours.

Reply

Thank you, I have ordered it now. We had such a laugh as we had to translate everything on google...think I didn't order it correctly or as I thought before x

1 like
Reply

😂Likewise! Glad you are sorted. I’m just trying to navigate my way around what syringes and needles I need now. Frightened to get that wrong! I’m confused as to why I need a needle to withdraw from the ampule and a separate one to injection the B12 into muscle, then there’s the question of sizes?!

Where and what needles etc did you purchase? If you don’t mind sharing?

Reply

If you don't have very steady hands and touch the glass of the ampoules with the needle it will blunt it, that is an 'ouch' when you inject.

Reply

Glad you got it sorted, I always cross my fingers and hope.

1 like
Reply

Thank you x

Reply

Mine took around 2 weeks but would have been a lot sooner as they had my address a little back to front so it was held for a while. DHL must have looked up my proper address and reprinted a label

Reply

Thank you, yes I noticed that on the email, hope my postie works it out! Lol!

Reply

Great service x

Reply

PS

The same happened to me.

I printed the relevant NHS Guideline and the Stiching B12 and gave them to my GP. It didn't do any good. but yours may be more open minded!

Reply

Yes, I thought about trying that, but he seems very arrogant, but I will still do it. I will send them to the Practice Manager. Then they will have to respond.

1 like
Reply

Yes, I had one of those, a GP at my former address who was extremely patronising. I gave up in the end and did as so many, started to take matters in my own hands. It helped having family in the medical profession to bolster my confidence I was doing the right thing for Me.

Reply

Perhaps that is what they want us to do.

Reply

I’m really sorry that you have got this trouble with your ill -informed ( the most polite term I could think of !) doctor . Yes, you must try to educate him, by sending the information on retesting being totally unnecessary and a waste of time once treatment has started . Sorry I haven’t got the link for that, but someone will send it to you .

There are several online German pharmacies that sell Hydroxocobalamin ampoules, but only a few who ship abroad . Tried, tested and reliable are —-

versandapo.de

bodfeld-apotheke.de

These sites are in German . so if that’s awkward , get a translation app to make life easier.Also sometimes they are out of stock for a few days .

You can register with them .

Search for Rotexmedica vitamin B12 depot . These are 1mg x 1ml ampoules which I find most convenient. . It’s important to use the word depot , because otherwise you can get Cynocobalamin type of B12 which is not used by NHS . A firm called Hevert makes 1mg x 2ml ampoules , but I like the 1ml — less to inject . You can buy any number of 10 ampoule packs , or a 100 pack . Courier costs (about €9.00 no matter how many you buy) it pays to look on both sites , as prices are always fluctuating . You can pay by PayPal

amazon.de is also a possibility . You can get this site in English . You will need to trawl through the various pharmacies selling on Amazon.de , as some of them only send to German addresses .

You will need to decide how you wish to self-inject -I.M. or sub-cut ( google ) All other equipment you can get from www.medisave. co.uk —- Needles, syringes, swabs and a sharps bin

But I hope that you have success with your GP

but I’m not holding my breath ! Very best of luck 🍀

1 like
Reply

A big thank you for all that fabulous information.

Why don't doctors know about blood issues. I would have thought that any type of anaemia would be basic training.

Thank you again.

Reply

And testing for vitamin B12 and folate should be on the normal blood test list.

Reply

Yes, I agree, it is so important.

Reply

I recommend you browse foreign sites with the Google Chrome browser, rather than Internet Explorer, Firefox, Safari or Edge.

Chrome can translate text on these sites on the fly, so you almost think they are arriving in English, saving you having to cut and paste into a translation app.

Only when the German text is actually in a graphic, not text, does it not get translated.

If you haven’t got Chrome on your PC/laptop, browse for it in your existing browser. Or on a tablet or phone, download it from the Apple App Store or from Google Play, depending if it is an Apple or Android device respectively.

2 likes
Reply

Many thanks for that tip .Very useful .👍

Reply

Thank you, I will give it a try.

Reply

Hi,

I've written a very detailed reply on your previous post " If you miss an injection of B12 do you have to start again with the loading dose?" that has (I hope) some useful B12 info.

"My doctor is still going to test me before he will give me my B12"

"He said he was going to look and see if it was safe to have the injections with high levels."

Perhaps he'd like to read these articles?

Testing B12 during treatment

stichtingb12tekort.nl/weten...

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/weten...

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

Perhaps he could contact haematologists at local hospital. Although sadly there is ignorance about B12 deficiency among specialists as well as GPs.

If you're in UK, BSH Cobalamin and Folate Guidelines indicate that checking b12 levels after treatment has started is irrelevant.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

May be you could write a letter containing relevant bits of above document? See my post on your other thread.

In the end many on this forum end up self treating as it's exhausting battling ignorance.

Challenging GPs can irritate them.

I hope you get the treatment you need.

Reply

Absolutely right— it’s so exhausting battling ignorance , especially when you are already exhausted etc. from being B12 deficient .

Reply

Thank you, that makes very good sense. It should not take him long to check this information out, but I have not heard from him yet. I am going to print out all the fabulous information I have had on here and send it to the office manager. It is no good sending it to my GP, he's not listening. I have an appointment on the 11th, my request not his.

I have been light headed for over a year, I keep telling him, and he keeps ignoring me.

He won't be able to ignore all the letters I am going to send. Then again it will probably make him more stubborn.

1 like
Reply

Hi,

The reason I suggested might be worth writing letters to GPs is that as far as I know these are supposed to be filed with the patient's medical records and are therefore less likely to be ignored than info passed on verbally or on photocopies. A copy could also be sent to practice manager.

I think any letters should be as brief and polite as possible as probably more likely to be read. I always keep copies of any letters I write as sometimes letters get lost.

b12deficiency.info/b12-writ...

I have sometimes in past referred in an appointment, to a letter written previously to GP. It was then brought up on screen. I also kept a spare copy of any recent letter in my bag during appointments in case GP had mislaid it.

I tried to get letters to GP a few days before next appointment to give GP time to do their own research.

Sadly I suspect that photocopies sometimes get filed in the bin....

Have a back up plan in case GP/patient relationship fails eg another GP surgery.

Things can become unpleasant sometimes...pressure was put on me to leave one GP surgery..I had always tried to be polite.

Can you take someone supportive with you to any appointment you think might be challenging? My impression is that GPs are sometimes kinder when there is a witness present. Even better if they have read about B12 deficiency. It's good to have another set of ears listening to what is said.

I just read on one of your previous threads that you were diagnosed with PA over 10 years ago but did not receive any treatment until about 2 years ago.

That is totally shocking.

Years without treatment is enough time to do permanent damage. See my post on your other thread for info about neurological consequences of B12 deficiency.

Please think about contacting PAS before your next GP appointment.

I think they would be very interested in hearing from someone who was left years without treatment when they had a PA diagnosis.

You said that you were not treated for years because your levels were always good.

Did you see the actual results for your B12 or was it the GP just saying they were good?

It shouldn't matter whether your B12 levels were "good" (I assume they mean within normal range) or not. If you were diagnosed with PA, my understanding (I'm not medically trained) of the guidelines is that you should have started treatment whatever the level of B12 in your blood.

Some people can have functional b12 deficiency, this is where there is plenty of B12 circulating in blood but it's not getting to where it's needed in the cells so the person will still suffer effects of b12 deficiency.

I learnt from bitter experience to always get copies of all blood test results after being told everything was normal/ okay and then finding abnormal and borderline results on the copies.

In relation to B12 deficiency, I look at B12, folate, ferritin or other iron tests and full blood count. See my post on your other thread "If you miss an injection of B12 do you have to start again with the loading dose?" for info on blood tests.

Your GP surgery may have online access to a summary of results/records. Details about online access should be on surgery website.

nhs.uk/using-the-nhs/about-...

Link above concentrates on online records. These may not have everything you might want to see. It's my understanding that you can also request to see your paper records, might need formal written request to practice manager.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone so messages can be left.

May need to be a PAS member to access support.

Before tackling your GP again, might be worth getting a full set of medical records and test results going back years. This could irritate them though. It can be very interesting to see what GPs have written especially if GP/patient relationship is under strain.

It might also provide proof of your prior PA diagnosis.

Some forum members when querying their treatment have been told there is no record of their PA diagnosis in their records. Sometimes treatment has been withdrawn as a result of no record of diagnosis being found.

If you haven't already I suggest reading all the UK documents I mentioned in post on your other thread before next appointment.

BMJ link emphasises need to treat people who are symptomatic for B12 deficiency even if B12 levels are within range , in order to prevent neuro damage. BMJ is generally trusted by GPs so your GP may be willing to read this.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Good luck.

Reply

Wow. When I was diagnosed with PA and told that my levels were in range, and I did not yet need treatment, I just believed it. I didn't know anything about it then. It's only recently that I found this forum. And at the time I was diagnosed I did not have access to my records, and didn't know I could see them.

I doubt that the surgery would agree to me seeing wall the back records, I think it would antagonize my GP even more.

He's still going to test me before any B12 injections.

There is clearly a problem, but I don't think he will put it right.

Reply

Hi again,

"I doubt that the surgery would agree to me seeing wall the back records"

The only reason I am aware of, for which GPs can refuse to give access/copies of your records is if they feel it could cause you or another person harm to do so.

Right of access to patient data

ico.org.uk/about-the-ico/ne...

Accessing medical records

seap.org.uk/services/nhs-co...

If you are struggling to access medical records, you could seek help from Citizens Advice Bureau and may be the local MP.

citizensadvice.org.uk/healt...

parliament.uk/mps-lords-and...

"I think it would antagonize my GP even more."

I gave up worrying about antagonising my GPs when I realised that if I didn't get treatment I was heading for dementia and potential spinal damage. I had already developed some dementia type symptoms and pins and needles in my spine.

I was never deliberately rude to GPs though.

Perhaps your GP needs to look up the meaning of "pernicious"?

"There is clearly a problem, but I don't think he will put it right."

Perhaps the Pernicious Anaemia Society can give him a nudge in the right direction?

Is there no way you change to a different GP practice?

Reply

My GP tested my b12 without telling me (was also testing iron levels). The lab wrote back on the form that there is no point testing once supplementation has started. GP hasn't checked since! :)

1 like
Reply

Sounds a sensible doctor, but you think they would know that.

Reply

You may also like...