Hi, this is my first post, although I have been reading and soaking up all the very informative advice the lovely people on here have posted. I do apologise for the length of it.
It took a good while to get my PA diagnosis (I was tested for heart problems, diagnosed with high blood pressure, asthma & told my severe headaches, memory & hair loss & clumsiness were menopause). Prior to a routine blood test for my blood pressure I suffered with severe numbness and tingling in my fingers. I hadn't been to the doctors about it as I thought it would just go away. However, following the blood test I received a call from a doctor who said I had low B12 (no idea how low as I'm still trying to get access to my medical records as it takes 28 days) and borderline folate. He said he was prescribing B12 tabs because I hadn't reported any previous symptoms! Unbelievable! I told him to look back at my history and insisted on having injections (luckily I had read this forum). I had 2 weeks of loading injections ie 6 in total and was told to come back in 3 months time. I picked up re tiredness but the numbness remained. I returned to a doctor and she gave me amytriptoline. After 71/2 weeks though all of my symptoms returned and I had to take a day off work as I was so shattered I slept most of the day. I returned to the original doctor and told her about my PA diagnosis and she was surprised she hadn't thought of that!! She said the best she could do was move this injection forward by two weeks as if I had it any earlier than that it could be dangerous. I wanted to contradict her but I didn't.
Anyway thanks to the information on this site I ordered vials from mycare.de and have started self-injecting.
Today I spoke to a doctor from a medical service linked to my work and she just re-iterated that the NICE guidelines are every 3 months. This time I did contradict and told her NICE say 2 months when you have neurological symptoms. She said she would have to do some research. She suggested another B12 test as my symptoms are very 'none specific' and could be anything ie iron deficiency, so I informed her that my iron was fine and anyway I had started self-injecting so it would be pointless doing another B12 test. She said I should report to my doctor that I was self-injecting (I have a feeling she's going to do that anyway!) She also asked how I know what I am injecting is safe and that too much B12 can damage my heart?
Is this true? I'm so sorry this post is really long and that you all know how ridiculous this whole B12 situation is but you just go round in circles. Am I allowed to bring vials back from Spain as I'm going there in a few weeks with my two grandchildren but I don't want to be arrested in front of them!
Thanks again for all of your posts and support.
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Newcastlelover
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NICE guidelines actually state for those with neurological symptoms, injections every other day until symptoms stop improving. Some need it daily. Everyone is quite different. Good for you for taking care of your health!
you can bring back medications for person use and I believe B12 is an over the counter medication in Spain so that should be okay - though in general I think the form used in spain is cyanocobalamin rather than the hydroxocobalamin used in the UK.
Not sure where the claim that too much B12 will cause heart problems comes from. It may be confusion over functional B12 deficiency associated with a few conditions that will result in raised serum B12. This can lead to build up of nasties because not enough B12 gets into the cells. If this happens then raising serum B12 even higher seems to resolve the problem.
Unfortunately a lot of studies report 'correlations' in headlines without looking at the underlying causal mechanisms so the wrong conclusions are drawn.
If you receive a B12 jab your B12 levels will be off the scale immediately afterwards and then fall gradually over time into the measurable range and eventually below it so if damaging the heart was a real risk then the damage would already have been done.
Hi Newcastlelover I've been having B12 injections every three to four weeks for more than 47 years and I'm still "clivealive" and over 78 years of age.
You stated previously that you take Cyanocobamalin shots. I’m in US and also on Cyanocobamalin shots every 2 weeks. I’m a little concerned about the aluminum in the Cyanocobamalin and wondered if you have had any concerns about that also?
I must have had over 600 cyanocobamalin B12 injections and to my knowledge I have had no side effects either from the cyanide or the aluminium content
To quote from the FDA Prescribing Information on cyanocobamalin :
"This product contains aluminum that may be toxic. Aluminum may reach toxic levels with prolonged parenteral administration if kidney function is impaired."
Thanks for reply. No haven’t had kidney function tested but don’t believe I have a problem. Just wish they didn’t have to put things in our meds that can cause other problems, especially since aluminum can cause problems if too much accumulates. I’m glad to have this group where I’ve learned so much.
Thank you, when they talk to you as though you are being silly you start to believe it ! She actually likened it to the debate on taking Cannabis and said people wanted it to help with neuralgia but the heart might not be able to take Cannabis. Similarly the heart might not be able to take B12. I said I did feel like a secret junkie, but it's only a vitamin at the end of the day and if I took a vitamin pill each day there would be nothing said (if only it were that easy). By the way, what do people do with their sharps? Is it a case of putting them in a case and binning it when full, or can you take it to your surgery? Probably a silly question, but I honestly don't know and need to make sure I do the right thing.
You should get a sharps box, a bright yellow thing. They cost a couple of quid from your pharmacy. We put needles, used ampoules, finger prickers, and used INR strips (blood hazard from my Warfarin monitoring) in ours.
I’m on my second in 14 years. When the first one was full, I pushed down hard on the lid (as distinct from the normal soft press) and this seals it.
It still needs to be disposed of as clinical waste though, and mustn’t go out with ordinary rubbish. Your surgery or pharmacy will take it from you and ensure this is done correctly.
Used syringes, devoid of their needles as above, we wash out and put in the ordinary household waste.
I got my first Sharps bin from Medisave.co.uk. when it was full I took it to my GP surgery & they ordered me a replacement. Some councils will dispose depending where you are.
I've just started volunteering at a drug addiction clinic & they said next time just take it there as they have all that stuff at their needle exchange.
There is no known toxicity of b12. This is because any excess that your body doesnt need is excreted out in your urine. Your doctors are talking rubbish & its scandelous that they are trying to frighten you like this!! They are laso likely to cause harm for fsiling to act to treat as per recommendations in guidelines. Sadly they are guidelines and as such many GPs do ignore them.
Like others have stated you should be having an injection every other day for neurological symptoms. Failure to act can cause long term damage.
I inject every day as prescribed by my GP.
Glad youve brought your own b12 vials etc.
In your shoes I would write a letter to your GP surgery practise manager ecplaining the guidelines & asking for an explanation from the surgery for their allegation of it being harmful to inject more frequently with the medical evidence to substantiate this claim. (There is none!) . Ask for it to be agreed you have injections of b12 every other day for the foreseeable future. Request your letter is put on your file.
I have to say I had to fight for my jabs.....always politely of course so they cant accuse you of being aggressive! In the meantime I self injected. The difference in me was so remarkable & observable it made it hard to defute.
I would rather listen to the amazing people here than any GP I have ever known.
Look at what they are doing. Now with the Gabapentin and the other Gaba drugs they prescribe..all "off licence" to boot..Its all hitting the fan. They dont work for pain. They cause psychiatric injury..The GP's all got it very wrong.
It was all a way of appeasing the patient whom they thought would just go away if they had a prescription and a promise. This all down to the fact that too many Opiods were prescribed ...By whom? By them...
I rest my case...
On the other matter..I think you may be OK if the ampules are in the case but dont bring syringes..Get them in the UK xx
I have been self-injecting every other day for 2 years now, and am still awaiting a symptom-free day. It is only in the past few weeks, certainly no more than 2 months, that I have come anywhere close to that goal.
I would NOT advise this regime to anyone else, it is admittedly an awful lot. My cousin manages quite well on a 6-week regime (yes, NHS) -but I'm still looking for answers and my GP has helped me with referrals and monitoring meanwhile.
I have recently been experiencing some heart thumping mainly during evenings and night-time - so at rest and unrelated to exertion. I believe this could be because I am getting better, with less yawning spates and less dizziness, that my heart is trying to work harder with blood oxygen levels which means at rest it is probably overdoing it a bit. This is so far just a theory and so far have had ECG (fine) and will be getting 24hr monitor. I'll let you know, but I'm not overly concerned although this has been almost daily since May.
Many people here seem to have heart arrhythmia as a symptom of B12 deficiency. It is on the more comprehensive lists, such as the Pernicious Anaemia Society one. This might be what the GPs are seeing.
As you are probably already aware, they do not recognise many symptoms as being related to B12 deficiency that are all too familiar to those that are actually B12 deficient !
Just to let you know: as expected, GP laughed at my theory, checked my blood oxygen levels - fine - and told me that to get any better levels, I'd need an oxygen mask, haha !
She's still organising 24 hr monitor because of family history, but believes it to be stress-related.
Aside from this, haven't felt this good for a very long time. Reason why I'm not too worried (or stressed).
"I'm still trying to get access to my medical records "
Some UK GP surgeries have online acccess to a summary of test results/records. Details should be on your GP surgery website. Look for online acess, emis access, patient access.
It is just a summary though and may not have all the info patient wants.
I've written a detailed reply on this thread on the forum which may have useful info.
Tell your doctors to study stats in U.S., Asia and Australia, where it's common to inject every week. I myself self inject every two weeks, and although it raises my G.P.'s eyebrows, they don't argue as they know I know more about it than they do!
You cannot overdose on B12, it's water based and you expel any extra when urinating.
Go ahead and buy in Spain, it's much cheaper, 2 Euros 80 cents for 5 vials; needles are cheaper also. Put them in your suitcase in the hold and forget they're there. I've been doing it for years.
B12 is a water soluble vitamin therefore nigh on impossible to overdose on because what you don’t use for your cells etc you piddle out! 🤣
When it comes to PA/ B12 deficiency and functional B12 deficiency GP’s have little to no clue whatsoever! They’re bloody useless!!
I SI daily! I’m still waiting for a symptom free day, every time I drop to every other day or I miss a day for whatever reason, I know about it by lunchtime and usually by 4pm I’m out cold because I’ve just crashed! I also have Hashimotos and Addisons so I’m kind of up against it, trying to get on top of it all right now. Fighting my GP on all three of these things was making things so much worse as it was sending my stress levels through the roof which was making my Addisons worse, so I decided that I would pay to see a private endo to sort out the other two things and I would just stop going to the GP about my B12 and self medicate! This forum and the ThyroidUK forum have been a wealth of information and expertise and I wouldn’t have gotten through the last few months without either group tbh.
Keep fighting your corner lovely as no bugger else will and good luck
I am in the US, I was diagnosed with PA at the same time as Hashimoto's. I was a mess at the time. My Dr did the initial doses and told me I would need them once a month. Once a month didn't cut it, I get them every 2 weeks and have for years, have no idea how many. I also have MS and Fibromyalgia so my memory is crap. But I am still alive, have my kidneys and liver checked every three months because of all the meds I am on. I don't even notice when I get a B12 shot, I see no difference in fatigue, I am always exhausted. They have checked my B12 multiple times since the diagnosis and say my B12 is good, keep up the shots. My husband gives them to me.
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