So here's the thing there must be GPs or medical professionals who are B12 deficient so it begs the question.
How do they feel about how they are treated?
How often do they have injections? Do they come up against the same issues we do in the general population?
It would be amazingly useful for a medical professional who has PA to speak out on how they are managed as a human.
Is anyone prepared to do this?
I once saw a nurse for my jab who had B12 deficiency. She had taken to buying from Germany, and self injecting, the same as most of us. Her first words when I walked in for my three monthly NHS jab was 'You must self inject, as you are too well' She was fantastic and really knew her stuff. Unfortunately, she was just covering maternity leave, so I didn't see her again 🙁
Isn't this just typical? I also self inject I was a nurse. It is infuriating that our hands are tied to helping people. I have found recently that supplies are getting difficult to get hold of. The duty post-Brexit is nearly as much as the cost of the B12. I also find it difficult to get hold of the 1ml hydroxo. I had heard of a lady who was sent coloured water so I am being ultra-cautious.
The German online Pharmacies that we on this forum deal with are all approved of and controlled by the German Health authorities, and are completely reliable . In fact all German online pharmacies are strictly controlled .
There is only duty to pay if the value of the order comes to more than £135.00 ( about 158 Euros ) That value includes the cost of delivery . Then Royal Mail take £8.00 for handling any parcel that has been charged duty . So it pays not to order large amounts of ampoules in one order .
As for someone receiving coloured water , I somehow doubt that if it came from a German Online Pharmacy . ….
Yes the 1mg x 1ml ampoules of Hydroxocobalamin made by Panpharma ( formerly Rotexmedica ) are difficult to obtain . I use the Pascoe b12 depot which are 1.5 mg x1ml instead .
More expensive per Packet than Panpharma but half price per Packet if you buy 10 packet offer . ( it’s a separate item )
I love the Pascoe 1.5 mcg - felt so well since using those EOD - I now occasionally only inject every third day!
This gives me huge comfort as I struggle to find my own B12. and am always wary of where it comes form you hear so many horror stories. I will look into these suppliers thank you. Do you order direct or though someone like amazon? I inject EOD so need a good supply but maybe I could do less injections with a slightly higher dose?
I use versandapo.de. as their delivery costs less than other sites. But some people use amazon.de They do not have Panpharma b12 depot ( Hydroxocobalamin) but Amazon is supplied by the online Pharmacies . You cannot use the reference numbers when ordering from Amazon.de. You have to use the brand name . e.g. Pascoe b12 depot. ( don’t forget the “depot” . With out depot you just get cyncobalami. ) . Yes you could try injecting every third day with the stronger Pascoe b12 depot . ( they also make Cynocobalamin)
Here is some information .
The following reliable German online Pharmacies (all registered with the German Health Authorities ) will deliver VitaminB12 Depot ( Hydroxocobalamin)single use ampoules to the U.K.
vesandapo.de( in Leipzig) Site is in German . Use Google Chrome for translation . This is usually the best value pharmacy. U.K. is “Vereinigtes Königreich”
Courier cost €9.99
apohealth.de ( in Munich) Site available in English . (Union flag , bottom left on my device .)
Courier cost €20.00 for 10 packets . Lower cost for fewer packets .
apotheke-marienbrunn.de( in Leipzig) Use Google Chrome for translation . Also deliver to Australia , New Zealand and USA . Drop-down country list is in German and U.K. is called
“Vereinigtes Königreich Großbritannien und Nordirl”
juvalis.de Use Google Chrome for translation
fixmedika.de obtainable in English ( but delivery costs €45.00 !!!!!!)
First of all register with the pharmacy .
When filling out the address form, you will see that the country is already filled out with Deutschland / Germany .You must first change that to your own country by using the drop-down list to — U.K., United Kingdom , Vereinigtes Königreich, Grossbrittanien . — however it is expressed.Do this so that your post-code and the rest of your address is accepted . Otherwise,you will be unable to order , and you will be tearing your hair out
amazon.de also sell Pascoe and Hevert . But depending on the supplying pharmacy, may or may not supply to the U.K. You can’t use the Pharmaceutical reference numbers to order from amazon.de . You must use the brand names .
The following brands are usually available.
PANPHARMA ( formerly Rotexmedica) unfortunately of late, this has been out of stock.
1mg x 1 ml ampoules b12 DEPOT ( Hydrocobalamin)
Packet of 10
Pharmaceutical reference number 16199653
Most popular ampoule . Good value , but often out of stock .
PASCOE b12 DEPOT packet of 10 —1.5mg x 1ml ampoules
Reference no. 07568672
Packets of 10 x 10 ( 100 ampoules ) Reference no.07568695
The Pascoe are much cheaper per packet if you buy the offer of 10 packets . If you inject weekly or more frequently, you will be covered . Otherwise , some ampoules may become out of date .
HEVERT B12 DEPOT 1mg x 2ml ampoules 1 packet of 10 reference no. 06078368
HEVERT B12 DEPOT 1mg x 2ml 10 packets (100 ampoules ) Reference no. 06078380
Use the Pharmaceutical Reference numbers to order from the pharmacies, it’s easier , but not if buying from amazon.de
The above brands also produce Cynocobalamin B12 single use ampoules. They are cheaper than Hydroxocobalamin., but reputed not to stay in the system as long. Fine to use as long as the patient does not suffer from the rare eye-condition called LEBERS. Cynocobalamin is widely used in the USA I do not have the Pharmaceutical reference numbers for the Cynocobalamin ampoules.. Cynocobalamin is referred to as vitamin B12. Hydroxocobalamin is referred to as vitamin B12 depot.
PLEASE BE AWARE OF THE FOLLOWING .
Now that the U.K. has left the EU , there is a limit to the value of goods that we can order before tax is due .Tax is applicable if the value exceeds £135.00 ( roughly €158.00 at todays rates — look it up to make sure ) Value does include delivery cost ! On top of that , Royal Mail charges £8.00 for handling.
I’m not sure how much the tax is , so please look it up .A member was quite shocked at what she had to pay when she exceeded the limit . YOU HAVE BEEN WARNED!
With best wishes .
that is fantastic thank you.
this is invaluable information thank you x
The phlebotomists at my surgery had her B12 stopped. When I mentioned this shouldn’t have happened and is a common but dangerous practise, she wasn’t interested. She subsequently got very ill and hasn’t yet returned to work. I’ve since learnt that her injections have been reinstated so I hope to see her again. I wonder if she’ll mention it. I won’t be raising the subject
If they can't diagnose us what makes you think they can diagnose themselves as B12D.
They are motivated. Two people in medicine that wrote books on B12 deficiency Pollack and Chandy were B12 deficient. I expect that they were only not as affected by B12 deficiency and do not understand some of us need more B12 than they do/did.
The neurologist I saw suffered from b12 deficiency/ PA .It was by chance j found him as saw him for migraines.
He was helpful.
Read all the available 'papers'
Wrote to G.p to continue b1e injections and not to put new on b12 tabbets as he wax 7 convinced they would do enough for me.
He wax so right.
Also he needed at least 6 weekly b1e Injections .
Not fitting Nice guidelines.
Also encouraged me to try subcutaneous injections at home .
Put in letter.
Initially ignored and refused by gps .
Then s phone call out of the blue .
That sounds amazing, Nackapan, my GP is looking for a consultant experienced and knowledgeable re B12D so he can write to and get assurance before he is willing to give me the frequency of injections I need (so close). Would you give me his name so I can recommend him to my practitioner. It would be a tiny step forward, potentially, to convert another doctor, even the whole practice. 🙂🙏
Apart from the forum rules of not naming or recommending doctors .I'm sad to say that neurologist has sadly died .
He made the professionals around him and my old g.p surgery very aware.
I was copied into the letter he sent suggesting subcutaneous b12 injections.
2 yests later a nurse questioned/ meddled as my regime wad not 'normal ' of necessary in her opinion anx refused to inject me.
Thd G.p partner was in and u asked to speak with him.
He sanctioned that daysb12 injection.
He however emailed a neurologist for an opinion.
I'd never met that neurologist.
Fortunately he santioned my 2 weekly b12 prescription to continue .
And so it goes on......
Thanks Nackapan, I appreciate you taking the time. Also, must re read the rules. 🙂
It’s fine to share doctor’s names via pm
Yes would be good to collate a list with The Pernicious Anaemia Society for everyone
A post could be started asking for members to share recommendations. I see you here a lot, is it something you’d have the time to collate
I think its a Pernicious Anaemia Society ask
From what I’ve read on this forum I got the impression it’s a highly informative and efficient organisation. I’d be surprised if they didn’t already have a list
I pretty sure I enquired at PAS a while back and no list. The support whom I spoke to just mentioned Dr Klein. I discovered yesterday that Thyroiduk has a list of endocrinologists, both NHS and private, I’m going to try somehow to see if any are sympathetically knowledgeable about B12D as knowledge about it is needed across multiple disciplines. 😳
I agree
The sad thing is that their research and books don't seem to be taken very seriously by the medical profession. The General Medical Council even temporarily banned Dr Chandy from prescribing B12 in 2012. The ban was only lifted after public outcry from his patients and supporters.
Dr Chandry has passed away now I believe. There is another brilliant Young doctor. He's currently going through CQC to set up a B12 clinic but it will be private and I think London based. But he intends to do online consultations I think.
It happens for sure and once they end up "on the other side" so to speak, some do end up feeling quite similarly to other forum contributors. Take this letter from a retired physician in Essex for example:
bmj.com/content/369/bmj.m13...
He found 3 months was not frequent enough for him, and went to self-injection once a month.
I am a healthcare professional (pharmacist independent prescriber). Prior to my diagnosis, i believed the party line that we should follow the blood levels. Since my diagnosis, and discovering that i need to inject every other day to function and that I've passed this on to my daughter too (she's not impressed), I've completely changed my approach (I start injections in a couple of people every week, my specialist area is pain management). My husband (again a healthcare professional) and I are working hard to spread the word across our ICB. There is change happening, and with access to the right people in high places, we will get there eventually. But it's a massive task to reeducate professionals and persuade them that they won't "bankrupt their surgery because of B12" (a direct quote from a colleague).In answer to how do we feel we are treated? I was partly lucky that one of the GPs that saw me had a wife who is affected, so was understanding. I was also lucky to have been referred to a Haematologist who understands. I still, however, have had to buy my own injections at times to avoid running out.
And I've still learned most of what i know from this forum.
To me, it appears that B12 - and my home turf, thyroid issues - are seen as solved problems.
There is a simple, formulaic approach which, if followed, results in a simple, formulaic treatment. And - broadly - that is what we see.
But if the solution really isn't the solution, at least, not for everyone, you end up with this simple, formulaic approach being embedded and extremely difficult to shift.
This is a great response thank you.
Would you mind sharing the haemotologist’s name please. You can do so via pm
Thanks
I've also been spreading h the word.Hopefully setting a trend as have been doing my own b12 subcutaneous injections since 2020 with NHS prescribed B12 .
Prescribing needles a hurdle so just buy my own
A neurologist helped. 2 our of 4 took interest and supported prescription. Covering the Gps back.
Unfortunately I've had many challenges keeping my prescription.
Mainly by nurses
questioning it.
Refusing it.
My next hurdle was with pharmacy admins kicking me off thf system as not 'the ususl regime.
Also having sn IM one every 6 weeks by a nurse or HCA at the surgery .
There are 3 generations of my family needing B12 Injections .
My mum
Me
One of my daughters
If we could provide evidence of a model that works and present this to the authorities. I have a model that works.
I’ve mentioned before on this forum that I’m a pharmacist. I was really sick and bed bound and sadly I got no help from the NHS despite being a member of staff for more than 30 years with lots of connections. I worked out what was wrong with me but had to go to Cambridge to get fixed. I couldn’t work or look after myself a year ago and now I’m working almost full time and enjoying life. I’ve made a lot of changes following this life changing experience and I’m actually re-training as now I believe that this is the root of nearly everything! Despite getting on a bit I’m passionate about trying to help other people get well too. I’ve left permanent NHS employment to re- train, but as I know now there are a LOT of people with this I have been working on it at the mental health institution I work at, and with all my colleagues and friends. Sadly it s not the fault of those that are trained in healthcare - the syllabus do not cover sufficient nutritional education. I think there is a beginning of an awakening though so hopefully things will improve and progress.
I’m so grateful for all the help and sharing by everyone on this forum, and the kindness of a stranger that helped me get my treatment in Cambridge originally.
“Treatment in Cambridge“, does that imply you went private, Loupharm? 🙂
would love to share my experience and discuss what I did about it.
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