Hi, as some of you are aware I am in the process of writing to my GP and my MP. My GP does not know that I source my own supplies of B12. I was going to put this in my letter so that she, and my MP, can see the lengths people have to go to have any hope of recover. As B12 is not available over the counter in the UK I'm assuming it is ok for me to say that I resort to sourcing from overseas? How many of you have informed your GP of this, and what was their response? Many thanks.....again 
Informing GP of sourcing own supplies - Pernicious Anaemi...
Informing GP of sourcing own supplies
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BeachArt
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This is the predicament so many of us are in.Some G.ps stop the NHS b12 prescription for injections if they know you self inject b12 from purchases abroad.
Some accept you need more but feel their hands are tied and don't act if you've told them. 3 monthly continue.
Some prescribe what you need .
Also state alot do source b12 injections privately for themselves.
Iron clinics ect
Also available at 'beauty salons ' as long as not stated medicinal.
As not sold otc in the UK
This is the position lots are left in .
You could just state the facts in your letter what 'people ' have to do to stay as well as possible .
I wrote to my M.P and got a reply from one of her workers that said nothing .
Really 'lip service'
I have also written many many letters to my old surgery that closed giving recognition to the one G.p that stuck her neck on the line not only prescribing 2 weekly b12 but a prescription to inject at home as long as I took responsibility .
Needle injuries.
She did have a letter from one of the neurologist I saw .
The other 5 G.ps ignored his recommendations!
This shoukd have covered their backs if worried .
Also many many letters to new surgery as the prescription was cancelled 4 times then reinstated .
The letter will be scanned on your medical notes .
I used to be able to read all of the letters and replies clinical from specialists written on the NHS app.
The surgery have now blocked that access and i only get to see codes and snippets.
I used a SARs request to get copies of my full medical notes.
In the system but still 30 years missing .
So while I take my hat of to you .
Also protect yourself .
Sticking to a statement of facts.
Mention involvement with The Pernicious Anaemia Society who provide information to professionals.
Symptoms .
Clinical response .
Individual needs.
Long winded but hope this helps you doing your part in this fight for recognition.
Thank you, as always Nackapan. I inject every 3 days and I want my GP to know that that is what works for me. I can see no way around it other than being honest and telling her that I buy from overseas. I am just more concerned about the implications of me saying that I buy overseas as it is not available OTC here. Will it be seen as me sourcing privately, or me sourcing illegally....?
Sorry to butt in here BeachArt as I know it was addressed to Nackapan.
Will it be seen as me sourcing privately, or me sourcing illegally....? This needs to be addressed because there is currently disinformation around this.
So, the process of purchasing from abroad. Now, you have paperwork with your package. Who signed and dated it ? How did it get through HM Customs & Excise ?
Two cases of people purchasing and using Hydroxycobalamin were read out in the House of Commons at 4.05 p.m. on Wednesday 26 May 2021.
hansard.parliament.uk/Commo...
If something truly is illegal, then the 2 women (the cases) would have been found and would be in custody. Would they not ?
On a lighter note, my stepfather tried to send Sparklers in the post to my niece and nephew for Bonfire Night. They are classed as explosives and it is illegal to send them via ‘standard couriers’. There are indeed specialised licensed delivery services. Just ask FlipperTD, they are a Scientist.
If you are concerned don't state where sourced It's the need of your frequency of importance here
I have said that I source my own supplies from overseas. I haven't specified exactly where as that isn't the most important detail.
That you are getting them from outside the country is not really the important issue here, is it?- So why go into that then. The important thing is that you have to source them yourself. If you note that they come from outside the country, then don't be too surprised if the British customs department, instead, then, doubles down and becomes stricter in attempting to limit your outside access. So I would not suggest doing anything that might lead to that. We can all see already how completely heartless and ignorant the many doctors and medical people are, can't we? So why would customs and border control be any better than they are?
Not being honest is always a strain on me. As best I can I go with it is wrong that I have to self inject without medical supervision. The fault is with those that get paid to practice medicine, it is not that I am unwilling to not thrive due to others failure to help me do so.
I find it helpful to use the phrase "very successfully self treat with vitamins."
"I should not have to self treat, it is wrong, I should not have to."
In the USA the best I could hope for is drive to a clinic and have a 1mg/ml injection of cyanocobalamin once a month.
My world is a better place if I self treat successfully as is the world of those that love me.
I wrote to both my surgery and MP.
The surgery replied telling me they could only prescribe the stated amount which was 3 monthly, I did manage to twist my Drs arm to give me every two months.
MPs are like gloryfied car sales men - good in the show room but havn't a clue of what is going on under the bonnet ! It was a waste of time writing to them.
I am writing the letter more to raise the plight of PA/B12d patients. I am not expecting my injections to be reinstated at more frequent intervals, although I have requested it. I am of the opinion that nothing changes unless things are challenged, or brought to light. It may well be a waste of time, but nothing ventured, nothing gained......
I like your metaphor about glorified salesmen ! 👍
Thing is I have the option of paying an honest capable car salesperson. That option is available to me.
Yes that saves you . But lots of patients are not so fortunate . On this forum members are fortunate enough to have access to the Internet and to be able to buy the tools that can bring us back to health . Many patients don’t have that . It is those that I grieve for .
I edited my comment and added car salesman. I saved myself.
I grieve for all that were lost no matter what the reason.
wedgewood.. Beautifully put abt those w/o access to the internet or finances to support better health. This has always disturbed me & this reality should also be communicated to GP's, MP's etc. within attempts to secure & assure effective treatment, being intramuscular/subcutaneous injections.
Thank you . It is a real scandal boisland . But I am convinced that if P.A. were treatable with a pharmaceutical tablet , there would be no problem . Doctors are too close to the pharmaceutical industry, and very heavily influenced by it .
I just love that analogy Jillymo, just hope I can remember it 😂
Hi BeachArt,
I wrote to my GP told them I si as and according to my symptoms. ( I am also a refractory coeliac so source all my own vitamin and minerals). Told nurse both in person and in writing keep my 3 monthly appointment.
I heard nothing back but as expected. Please know that I am a qualified midwife but work as an Auditor. Lots of people find my job title scary, I do not pull any punches. I used the exact wording of ‘which I source from Germany’
As Nackapan said, ‘Some G.P.s stop the NHS b12 prescription for injections if they know you self inject b12 from purchases abroad.’
Now, people believe they do not have PA/B12D on their Medical Records which is FALSE. People have had testing, loading doses and the letter you write on [ date ] is confirmation of treatment frequency. Please also cc: Practice Manager.
I am unsure if you have other diseases/illnesses, many of us do. So, when discussing P.A./B12D and other Health Professionals ask, You have your Hydroxycobalamin 3 monthly ? I state, I have an arrangement with my GP.
Nackapan has said, The letter will be scanned on your medical notes.
People will find their Medical Records will have errors and/or in disarray which include a man being prescribed contraception. So, you are not asking them but you are telling them in statements. This is because on :-
1) 1 April 2014 - misdiagnosis of Chronic Fatigue.
2) 4 July 2000 - misdiagnosis of Fibromyalgia.
If I was scrutinising your records, the GP Partner would receive documentation of Get Your House in Order.
Best of luck
😁
Can you tell me about your refractory coeliac disease please?
Hi MrsTuft,
Is it ok to private message you just because I do not want to hijack BeachArt’s post. No problem if this is not viable. My biography does state I have gone on to gain further qualifications in this area. Technoid too.
Like BeachArt, I wrote to my GP and M.P. Although, I simply cannot put all the letters after my name, it would bore someone senseless.
I got a diagnosis of Pernicious Anaemia at a Nuffield Hospital ( positive Intrinsic Factor Antibodies test) Had to pay for private GP because my GP said there was nothing wrong with me, despite numb feet and several B12 deficiency symptoms .
I found out later that the surgery blood test taken at this time had a b12 reading that was below range . This was not reported to me .
Gave my surgery the Nuffield Hospital report. I had a 3 monthly surgery injection prescribed , which they would not increase , in spite of symptoms returning quickly after an injection . So I started self injecting , ( ampoules from German online pharmacies ) and told my GP .
My surgery injection was cancelled immediately. My GP told me that self-injecting was dangerous because too much B12 was toxic ; ( but didn’t say how much too much was ) .
My numb feet were pronounced idiopathic , but no referral .
As you can imagine all the above took many months , and I’m left with very painful feet - irreversible now . But all other symptoms gone , due to weekly self- injections.
I have repeatedly requested b12 on repeat script from gp and it has been marked gp rejected request.. They will only authorise one shot every three months even though haemotoligist has asked them 2-3 months as required so I’ve given up asking and self inject.. My worry would be if any MP has the source info they may use it against us and try and block the German pharmacies from sending to us ,so No is my answer ,I wouldn’t go down your route , from previous confrontations with other gps I avoid it and I certainly won’t be telling them of my sources. A lot of us would worry too that they may ask us to exit their practice if we continue to self inject we just don’t know really.. I wish you the best of luck in your choices and it’s always going to be split on here, we all have our own thoughts and reasons. Take care x
I have, myself, thought all the things you have said, and had the same concerns. However, I keep coming back to the fact that if I don't raise this issue with my GP she will assume that I am able to manage on 1 injection every 3 months. The only way I can inform her of the fact that I would be a zombie at 1 injection once every 3 months is to be totally honest with her. That would mean telling her that I source my own supplies, and that I inject every 3 days......
That is so true. I've been told at my practice "you're the only one needing more", which of course they are not prepared to provide. Although they are aware I supplement my own it's not on my records anywhere. So is this valuable information about the ineffectual current treatment being used to inform other doctors? No. Just that the pain in the backside woman who was constantly complaining about a myriad of ills, and demanding more injections has spontaneously healed!! Didn't they say it was all in her head after all? Case proven!
I don't quite trust bureaucracy and it's tendency to want control and in that pursuit it's capability to commit banal evil. In this case if we poke them enough might they decide there is a need to prohibit the private import of prescription medicines?
I would suggest that we might consider discretion re the importation and describe how we have to obtain b12 from private providers, beauty salons etc.
I wouldn’t tell them. But good luck to you!
But what would you say? I keep coming back to if I don't tell them they will believe that their 1 injection every 3 months is working......
I’m happy having my B12D on my medical record and self injecting in between. I think no good can come from telling your GP something they aren’t trained to agree with. I’d be concerned that they’ll start campaigning to block our getting our supplies from Germany - then my life would be over. I don’t need my GP’s permission to take a vitamin that makes me feel better.
But what about informing/educating them in giving the correct diagnosis to other patients? What about giving them some insight in to what we go through, and the things we have to do to feel better.....?
Hopefully the new guidelines will help a smidge with that. I’m happy to say I have to top up between injections but to go as far as saying self inject daily with imported stuff only alienates them. They’ll aim to stop us any way they can. You’re right in principle of course but in reality I only think it will make things worse.
All the good that you want to do can be accomplished just as well if you were to leave out that you source your B12 from Germany (or any other place outside of the country).
I do not honestly believe that customs, or whoever, will be that concerned about us buying from Germany, but I have changed the wording from 'overseas' to just that 'i source my own supplies'.
I'm in the US. A recent order from Germany was shipped back to Germany at the pharmacy's request. The pharmacy had it sent back to them from customs here, and showed me a copy of DHS Form 4607, which they received from US customs in the clearance process. You can look this up and see the form for yourself. I've ordered with this pharmacy many times before over the years, and this had not happened previously. So I can only tell you, what happens here may soon follow where you are too. I'm feeling pretty distressed about my future now and the lack of any proper treatment for my condition, at this point.
I dont think we'll be troubled with Homeland Security Forms here somehow . . . . . What do you do now though. . . . . I read that ye can get B12 from Canada which the US trading agreements with . . . . .
The GPs hands are tied because of Nice regulations and the amount of money the practice gets for every registered patient. What's happened to dentistry is occurring throughout the NHS, essentially pushing as many people as possible to go private, for routine stuff. (At my nearest private dentist B12 injections are one of their most popular treatments at £35 a go. X 10 patients, not a bad hourly rate.) So it's probably policy to drop anyone who says they are getting private supply. Rather than your own MP, we need to all write to Wes Streeting, the Labour Party shadow cabinet health spokesperson. We need a concerted campaign on how proper testing and treatment could save the NHS and social care £millions. So we need some facts on how much is being spent on the stuff that doesn't work, because of misdiagnosis and poor levels of treatment.
Dr Michael Mosley and other TV doctors are the ones to get on board. There's a lot going on with some Doctors waking up to nutrition and food quality. Then at the bottom of it what environmental factors are triggering the autoimmune response.
So I'd be very cautious about telling your GP. Sound them out with an open question and see if they tow the standard line, or express any frustration with the current system. As to changing the rules via Parliament, it would very much depend on your MP. they often have a pet health project, so relate it to that as much as possible. I'd say the best way in would be the cost of social care and how many dementia cases are actually B12 deficiency, or PA left untreated too long. I don't know where you'd find the stats.
I'd agree with you. . . . . . Need to know basis. . . . . Dont disturb sleeping dog kind of thing .. . . . Mine knows but I have an understanding Clinic. . . . .
As to a big house challenge that has already been done not so long ago and squarely and surely kicked out. . . . . .
I haven't plucked up the courage yet to inform my GP that I self inject. I was going to, but covid came along, and I knew that wouldn't be the right time !!!
However, I will get round to it, because I don't like subterfuge, and I want them to know that NHS treatment is totally inadequate.
I also fear, heaven forbid, a day when I am may be no longer able to self inject, or even afford to pay for B12 privately
Can you try again to push fof more frequent injections?Ironically easier if you ate 8n better health
The covid pandemic i think helped my plight to self inject .My prescription is presently 2 weekly .
During lockdown i was promised this wouldn't stop.
It didn't.
But 3as challenged many times.
The letter from the last neurologist stating to keep me on injections as was not convinced by the few papers of oral b12 trials was at the 'right time '
Also advocated sc at home.
My 'chosen G.p ' decided to prescribe b1e to self inject at home against alot of peer pressure not to.
Thus letter was then deemed 'out of date ' and s second option was sought by a partner.
It's been s struggle to get and keep thd regime I've had for over 3 years now .
It definitely has educated several .
Especially every one at the surgery who saw me from the start .
Also nothing else to cloud the waters as on no other meds.
Nurses I found the worst.
Not believing.
Refusing injections
Not doing what the G.p had prescribed.
Some hostile saying noone needs more than 3 monthly.
One even said I was lucky as she has to buy hers!!
Answer ;
well i do and many ,many more do too but its not recognised or on their notes.
Have actually had to do a quiet sit in in one occasion when thd nurse refused to give it .
I was not leaving until it was done .
Easy as so Zoned out and could hardly move .
I do see a good nurse 6 weekly now for an IM b12 injection.
Sc sc IM is my NHS regime/ prescription.
Awareness is needed .
Raised the profile of The Pernicious Anaemia Society too.
If your gp believes that one injection every 3 months is enough then I think nothing you do or say will change their opinion. Pick your fights wisely is my view on life and don’t mention where you source from.
Importing medicines is already problematic due to Brexit restrictions and reported shortages of raw ingredients generally.
You never know when a bit of casual information will blow up into some international spat or other. So I say don’t hand ammunition to those who don’t have your best interests at heart.
I hear where you are coming from but I am of the opinion that if I do not challenge it my GP will believe that 1 injection every 3 months is working for me. This will not help current, or future, patients as my GP will not be aware that patients are suffering, and resorting to sourcing their own supplies. I am not telling her that I buy from overseas, but merely that 'I source my own supplies'. I understand your concerns, I really do, but how else are the medical professionals ever going to sit up and take notice if they are mislead into thinking that their patients are managing on the NHS protocol??
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