Thought I would share my feelings and problems with you and finally need advice too.
I was diagnosed;after a long time of feeling unwell, collapsing at work,numbness creep to hands and feet and then all way up from feet to waist,loss of taste, absolute washed out feeling, headaches etc etc., this was in the mid seventies years living in London, married with two young kids.
i was lucky to then have a great GP and friend of the family who got me into a premier London Teaching Hospital as an in patient for tests...
I had already researched why I was ill and came to a conclusion ..I had PE. !
After a lumbar puncture, into an already swollen brainstem and spinal cord given a bone marrow test, into the chest bone and various other blood tests etc.,
The consultant on ward speaking to his students around the bed said to them he had suspicions it might be aplastic anaemia...thanks...tell my wife to check my life policies.!!
After some days they agreed with my earlier hoped for diagnosis of PE...sigh of relief.
An extensive course of B12 hydroxocobalamin intramusculur injections proceeded whilst still an in- patient...later the schilling test was administered, to ascertain my absorption from my blood to other parts of body..urine etc.,
I was told by the consultant on my being allowed to go home;to ensure I had my B12 injections every 4 weeks..and not to miss them.!
I have been well under that regime from the 1970's to approx 2/3 years ago..with my GP..continuing with my jabs 4 weekly, despite an out patient consultant stating wrongly in a letter to my GP that I could have jab three monthly (as per pamphlet in B12 box regime), of which my GP ignored and continued to allow my 4 wkly regime.
Regrettably my wife and I retired from London to South Coast some 8 years ago causing us to register with a GP near our new home.
All was ok until about 2/3 years ago kept appointment for my 4 wkly jab at GP's and the nurse took exception to the fact I had jab 4 wkly instead of the "usual 3 monthly regime" and strode into my doctors to complain..he investigated and commissioned a blood test..
The resulting blood test said I had too much B12 in the bloodstream and stopped me having my 4 wkly jab..my symptoms all came back over the next 6 months and was ill with my thyroid erupting too, for which I was given Carbimazole tablets..on a watch and wait.regime by the local Hospital thyroid consultant. He wrote to my GP ensuring I had my B12 jabs 6 weekly...
My Thyroid after some months treatment righted itself...and I continued with B12 jabs 6 weekly..until..last week..another nurse at the GP's surgery interfered again and told my doctor I should be having 3 monthly jabs(also looking at my file where my GP had sent me for tests to an Out Patient Neurologist last year due to my feeling unwell again..on 8 weekly jabs that the surgery was doing.)
The blood tests said ...B12 level was well above the normal range at 1337 and more importantly the levels of both homocysteine and methylmalonic acid were within the normal range (respectively 14.7 CF 5-15.and 0.1 CF less than 0.29 ) this rules out the possibility that you are deficient in vit.B12,...
The surgery has now stopped my B12 as per a phone call cancelling my appointment from the nurse. I still have to find out if they will allow it even 3 monthly...so my health is now greatly at risk..as well as my life.!
The test gives a false positive as to whats in ones blood, not whats being absorbed to ones organs etc...the schilling does that to a point, but too expensive for it be done I believe..
I have recently returned from holiday in Spain and have learnt from the web; people can buy the B12 ampoules without prescription there, is this so..??
The other problem is i cannot get the needles unless on prescription, which will be a waste of time asking my GP for..how can i get some..No I will not buy ampoules or needles on the net..too dicey.. !! my wife knows how to inject them.
Yours in a state ...(Mr) Arney.
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arney
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oh poor poor you -what is with these gp's. you have a fight on your hands and if I were youI would ring the pernicious anaemia society - you need all the back up you can get.
There are too many stories like yours. I have a similar experience regarding withdrawal of B12 altogether, plus profound ignorance of the condition at GP level. But really, who is in charge at your local surgery? The nurses sound like hard cases!
As for sourcing ampoules and needles on the net... I think your concerns are misplaced, if you stick to suppliers mentioned in this forum. Many of us inject ourselves. I do my subcutaneous injections, but some brave souls have learned to inject into the muscle. If your wife knows how to do this anyway, all you need to do is buy sharps bins, swabs, and syringes/needles from:
medisave.co.uk
The B12 can be purchased from several places. If you want a full list I would post a separate question asking for suppliers. However, you can approach a British charity for help with this: B12d.org. Alternatively, many people have purchased B12 ampoules from EU countries, where it is legal and normal to buy over the counter. Amazon.de have a large range of B12 (hydroxocobalamin only) ampoules, with a lot of reviews from UK customers to guide you.
l would possibly look at b12d.org a retired gp called dr chandy set this charity based organisation up to help people with b12 deficiency he provides b12 injectable it is a charity and can give for free if you need, what most people do is buy it and add a little on to help the charity keep going you can e-mail him and he will give you advice and tell you where to buy your needles and how much you should take, lm a wimp so haven't self injected yet but this seems to be the safest place to obtain b12 from, my husband is also horrified about me self injecting from an over the internet provider but this is a charity most of us will have probably heard of and use
Thank you Hillwoman all you have stated has been taken down and will be acted upon, you mentioned you inject subcutaneously..not with hydroxocobalamin ??..as that is an Intra musculur injection.!
I am a little distrusting of buying medication on the Internet having seen the bad reports of fakes on the market but will investigate further.
Arney, you are right to be cautious, but PAS members have found reliable suppliers and can warn against those who should be avoided.
To answer your question, I inject mainly methyl-B12 subcutaneously, but actually you can do this with hydroxocobalamin too. I was surprised by this, but a private doctor I see assured me that it was okay to do this. I treat myself with some occasional hydroxo, and I also treat my husband this way, with no problems. He has a diet-induced deficiency of B12, whereas I have PA.
Hydroxocobalamin can be given by intramuscular, subcutaneous or intravenous injection. It is only licensed for intramuscular use in the UK which leads to the misunderstanding that that is the only way it can be given.
I'd urge you to contact the PAS (Pernicious Anameia society). Their office is closed until June 15th but you should be able to leave a phone message. They can sometimes intervene on behalf of members by writing letters. Lifetime PAS membership costs £20.
Sadly your experience of having your injections stopped is not unusual even though recommended UK treatment for PA is injections for life. See Links below to Martyn Hooper's blog for similar stories.
Some people who can't last until their next NHS injection use sublingual B12, oral spray, nasal sprays, patches.
UK B12 documents...has your GP read these?
I was told that the NHS should be using the "BCSH Cobalamin and Folate Guidelines". these guidelines came out in 2014 but sadly some GPs are not aware of them. I read the whole document and gave a copy to my GPs along with a copy of Martyn Hooper's latest book.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
I'm pretty sure that the BCSH Cobalamin document makes it clear that once someone is taking B12 for PA then further B12 blood tests are not necessary. Page 8 of the document and I think page 29 mention B12 treatment for PA is for life.
This link following is based on the BNF (British national formulary) which gives advice to GPs on what they can prescribe. Your GP will have access to the BNF and hopefully the nurses will as well...there is probably a copy sitting on the GPs desk or bookshelf.
I am a little distrusting of buying medication on the Internet having seen the bad reports of fakes on the market but will investigate further.
In places like Germany (and most of the rest of the EU) many people nowadays get their medication from online pharmacies, so they're pretty safe.
I get mine from a company that's the online section of a physical pharmacy that's been in business for over 250 years. Here's their bio - versandapo.de/About-our-int...
You'll notice that it's in English. Yes, much of their site has an English option. Here's their list of B12 for injection - versandapo.de/article/searc...
I and someone close have both bought a number of medicines over the internet. Always been fine.
I strongly suspect that products which are likely to be bought over many months and years are far more likely to be "safe" simply because suppliers rely on repeat purchases.
That is not to say that you don't have to be careful and thoughtful, and ask for recommendations.
Also, you need to take appropriate cognisance of the legality in the countries involved.
Hello sorry to hear about your GP, mine is not much different so I have to just be quiet and have the three monthly and sort myself out for everything else. You can either buy from the Web or what I do is buy it when either I or members of my family are abroad. In France Germany and Spain you can get it over the counter in any chemist, and it is legal to bring it back too. As for the needles you can get them from several places on the Web medisave or amazon even I would also try talking to the doctors and showing them the bush guidelines this has worked for some people.
Hi arney our "histories" are somewhat similar in that I was diagnosed with P.A. in 1972 following two Schilling tests and put on Cytamen - cyanocobalamin injections four weekly for the rest of my life.
I was somewhat surprised to read you went straight onto hydroxocobalamin every four weeks from the start in those far off, long ago days as it was several years later that i was put on "Neo-Cytamen" (hydroxo) but because I had an adverse reaction to it, couldn't "last" the three months regime and was swapped back to four weekly cyano.
The Schilling test is no longer available due to the difficulty in obtaining the radioactive material used in the test. Anyway, once you have the P.A. diagnosis, no further testing is necessary.
This "one size fits all" syndrome is really annoying as well as being harmful to your health and well-being and I think you must fight your doctors and nurses tooth and nail to get the treatment you NEED.
Do not worry about sourcing B 12 injections(ampoules ) from Germany . The ones that I have dealt with(for over 18 months) are just online pharmacies that usually have shops as well .German pharmacies are strictly controlled,and only deal in pharmaceutical products .(unlike ours)So they really are specialists in their field .
Needles and syringes are available without prescription from medical suppliers in UK.So many members of PAS use these sites. Never heard anything negative about them. We all thank our lucky stars that we can make use of them,and are so sorry for PA patients without access to a computer and the knowledge that we can get from them,who are struggling on the inadequate treatment they get from the NHS.
I have recently started self injecting in between GP given injections and got my B12 from Amazon.de
I then looked up local needle exchange on google and found them to be in Boots and Sainsburys. So very nervously I went along to Boots pharmacy section ready with a detailed explanation of why I needed blue and green needles. It wasn't really needed as the cheerful lady happily handed over a sealed bag of sharps box, needles and syringes and asked me for my initials. And that was it, easy. I even got a bonus of 2 free condoms and a leaflet on safe sex :).
I'm so sorry Arney that you are having to go through this and, however much I hear of interference in long standing treatment of PA on this site, the ignorance of the medical profession of B12 deficiency/PA nowadays continues to shock. In the meantime, it will surely relieve your mind to be able to self inject as others here do successfully.
Your surgery, however, needs to take note of all the information already given by others above and, if nothing else, the following should be sent in writing to the surgery:
Latest Cmim/BMJ research document. Important points from the Summary etc.
" Summary points:
Vitamin B12 deficiency is a common but serious condition
Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment
There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance
There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency
If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features "
"Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
"It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
* Page 4 under 'Parental Treatment' :
"In irreversible cases, for example, pernicious anaemia, the treatment should be continued for life."
..........
The above BMJ research document is supported by many research papers and is peer reviewed. It also states that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters - bottom of page 4 under 'How is Response Assessed' :
"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required."
Regarding your test results for homocysteine and MMA levels, looking at the research document under 'How is response to treatment assessed', it would seem to prove that your four weekly treatment had actually shown to be working ! :
"Homocysteine or methylmalonic acid should normalise during the first week of treatment. Failure to do so suggests an incorrect diagnosis, unless renal failure or other causes of increases in the metabolites coexist. Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required."
It certainly does sound as if you have suffered miserably as the consequence of the unhelpful interference of a couple of ignorant busy-body nurses. Its unfortunate that the myth continues that its the amount of B12 in your blood that is important - mine is permanently off the scale and to be honest I only go back for maintenance shots to keep it on my medical records. Most of the time I use nasal sprays which work very well for me - believe that you can get some high dose sublingual sprays from places like Boots nowadays.
To be honest I would be surprised if the B12 used by your GP didn't involved an internet transaction at some point. It isn't the internet as a means of doing a transaction that is the problem - as long as you pick up a firm that is well established and has a good reputation you should be okay. I was totally opposed to buying anything over the internet until I had the accident (fall that resulted in a broken ankle) that finally resulted in getting my B12 absorption problems coming to my attention at the end of 2012. I was completely housebound so would have been completely dependent on neighbours and friends to do everything for me without it - and I can be really fussy about my food - eg I want double cream not a cream substitute - I hate seeded loaves but do want a good wholemeal. I also used the internet to source various aids that made life possible over the next 3 months.
Yes, I most certainly wouldn't purchase any B12 on ebay but I'm quite comfortable with the health-food supplier I use or my B12 supplies, the german pharmacy I use for injectible B12 and the UK supplier I use for my needles - medisave - which must be used by medical practices and veterinary practices - as well as companies getting supplies for health and saftey and staff health functions. If you are worried about the possibility of financial details being stolen - it's always going to be a possibility and there have been some high-profile scandals - but there are measures that you can put in place - transactions generally need use of a security code and a supplier that stored those would be breaking their contracts with card suppliers.
My reply is regarding your queries about Spain. You are quite right that over-the-counter B12 is available but it is Cyanocobalamin at a price of less than three euros for 5 injections of 1.000 micrograms. The Hydroxocobalamin is only available with a private prescription.
Have you given any thought to sublingual lozengers? I have done loads of research but still have no opinion of this option. Of course, I am sure we all agree that injections are best but if unavailable the lozenger choice is worth researching.
Has anyone tried them or have any "second hand" knowledge of them that may aid Arney in finding a solution to his problem?
I really feel for you and sincerely hope you find a suitable solution. All the very best.
Hello Arney... Your story only goes to show that we can never rely on the medical profession indefinitely. You just think you have it sorted and something changes.
I am so glad that this website has given me the means to be independent..... I still have my monthly injections at the surgery but self inject myself as well. My GP does know this.
The injections you see on this web site from Germany are reliable...the pharmacies are very well regulated. As you have been successfully treated with hydroxocoalamin for many years You should stick with this. It is easier to obtain and less expensive.
The most important thing for you is to get the injections that you need asap before any irreversible damage takes place....the worst thing is getting yourself organised to buy what you need and doing your first self injection. After that believe me its a doddle.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I would also try talking to the doctors and showing them the bush guidelines this has worked for some people.
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