My story starts around 18 years ago when I was referred to the hospital to have tests for suspected IBS (Irritable Bowel Syndrome), I will spare the gory details but the usual stomach pains, cramps, irregular movements etc, I am sure you get the picture.
So, apart from the usual tests, cameras and scopes, they also tested bloods and whatever other examinations they felt compelled to perform under the circumstances. It turned out, that IBS was not the case, or if it was, there was something more sinister going on. Apparently I had a vitamin B12 deficiency caused by a low intrinsic factor with Pernicious Anaemia.
I can’t remember the full ins and outs of the events all that time ago but I do recall being sent back to my GP for a “course of injections”, which I have since learned are the “loading doses” to kick start your B12 intake. I can’t remember now how many I had, but the first appointment for the injection was with the Practice Nurse who whilst injecting this blood coloured stuff into my upper arm explained that following this series of loading doses I will now be on B12 injections once every 12 weeks for the rest of my life, (known as “Maintenance Dose”). Great, I thought – why me?
It turns out though, and I must admit, that at the time I really just took the word of the professionals and accepted that I had a “condition” and just had to accept it and get on with it and duly attended each surgery I have been registered with for my 12 weekly injections. It is only possibly the last 3 or 4 years where I have actually started to take more of an interest in what all this B12 deficiency is about and in that time I have learned an awful lot about the condition.
As I lead quite a busy and hectic life with work, family, travel to Manchester on a regular basis, I found that it was not always easy to keep to my 12 weekly injections. They were not pre-booked into the surgery offering some sort of reminder system, I just had to manage them myself and hopefully make sure I attended on the due date. And despite putting reminders into my work calendar I quite often missed my due date by days, and I am embarrassed to say, on occasions, even as late as 2 weeks or more. This led to a very unhappy Practice Nurse (PN) tearing a strip off me and lecturing me, in the nicest and caring way, about how important these injections are.
Around 12 months ago, whilst in the surgery getting yet another telling off, I did say that I am my own worst enemy and I do find that at around 8-10 weeks after my injection I become extremely lethargic, very restless, short fused and lacking very much in concentration, which was all starting to have an effect on my work and personal, home life. The PN asked if I had considered speaking with the GP to see if I could reduce the time between injections, although this then led to another lecture as she made a very good and valid point that if I am feeling like this after 8 weeks then what condition am I in when I eventually get to the practice some 14 weeks after my last injection, knowing of course that I had a proven history of lack of urgency and planning for good timekeeping to ensure effective, on-time injections.
I subsequently made an appointment with the GP and pleaded my case to reduce my injections to 8 weekly, at first the GP was not happy, we discussed some more and in depth and she, not so much with reluctance but she did challenge me on the whys and wherefores, which I am glad to say I stood my ground and we agreed to meet half way and go for 10-weekly treatments. At the same appointment, I also mentioned about my busy workload, working away and often missing injections and asked if there was any way she would agree to me self injecting. To my surprise I got no resistance to this request whatsoever, which really surprised me, given the in-depth discussion about reducing the number of weeks between treatment. I think, maybe the fact that when she asked where in my body I was looking to inject I replied with, “the only feasible location given that it is intramuscular and self-administered it would make sense to inject into the upper outer quadrant of my thigh. I had obviously done my homework beforehand, oh, and watched a lot of ER and Casualty so that qualifies me as a medic! – Of course I jest, but there is a definite need to increase your knowledge of your condition if you are ever looking to move the goal posts with your GP controlled medication.
So, I took my next appointment with the PN and as the GP had placed notes on my file about future injections being self-administered, she watched as I injected in to my thigh, in the correct place, which got her seal of approval and off I went with some needles, syringes, swabs and a sharps box – Happy days and the rest is history, as they say!
Since then I have done a lot more research about self-injecting. As I say, I think if you are serious about managing your life, your health and your wellbeing then it is important to understand what is going on and to also understand what is best for you and hopefully how you can add some longevity to your existence, health and happiness. One of the places I turned to, which I have found to be a font of some very useful and supportive information, is Facebook. There is, in my opinion, no better way to learn than through the power of social support. There are a plethora of groups, pages and people on Facebook to do with B12 deficiency, Pernicious Anaemia and all manner of derivatives thereof. One of the best groups I have found to my liking and offers the best of support is Pernicious Anaemia/B12 Deficiency Support Group. There are a great bunch of people on this group from all over the world who either suffer from this condition themselves or have close family/friends who they are supporting. There is also a wealth of information in the files page and everyone is happy to support in a non-judgmental way, which is very important. If you are a sufferer and have bouts of fatigue, depression, tiredness, forgetfulness etc. then you will know exactly what I mean by “non-judgmental”.
So, having read up a lot about self-injecting I started to learn a lot more about how others cope with their symptoms and condition and soon realised that those who self inject all have a number of things in common. They have all been diagnosed with PA or B12 deficiency, they all feel the same or similar symptoms, and they all have battled their cases with their GP before self injecting. I have to say at this point that I believe I have a very good health care at my GP practice and although I have had to put my case across I have never once felt that I have had unjust resistance to my situation or desire to self-inject. Some people it is clear have battled and battled and feel very alone in this PA/B12D world of ours.
Having done a great deal of research in many areas, and not just on Facebook I might add, I, like many other sufferers took the plunge and decided to order my regular B12 ampules, Hydroxocobalamin from a reputable company on the internet, a company called Goldpharma. I also ordered some extra syringes, needles and swabs from Medisupplies. Both companies are very much leaders in their medical arenas and both came very highly recommended so I had no qualms about ordering. For anyone unsure about ordering medicines from the internet, and believe me, I had the same concerns as you, first off, Vitamin B12 in the form of injection (Hydroxocobalamin) is NOT a medicine it is a water based vitamin and secondly, Goldpharma is a German company who operate under very strict medical and pharmaceutical licenses, which they have to have by law before supplying anything of this nature.
Why did I choose to order them when I get them free on prescription through my GP?
Well, as I mentioned above, there are occasions where I feel really fatigued, I have bad days at work, where I can be talking to someone, part way through conversation and just forget what I was talking about or even forget what things are called, everyday items, like the kettle or a pen or pretty much anything. Now, this may seem normal to you and you may think that everyone has bouts like this once in a while but these episodes are different, they last longer and are difficult to manoeuvre around. These are known by sufferers as episodes of "Fog" or "living with the fog". It is a known symptom of B12 deficiency (B12D) or PA.
So, I took the decision to order the supplies and it made me feel as though I was in control of how I felt each day rather than having to stick with my prescribed 10 weekly injection. Yes, I had questions and yes I had concerns and that is why I made sure I did some homework first, before I even bought the extra supplies. There are many concerns amongst a few, around self-medication, concerns such as, what if you overdose? What if you don’t inject correctly? And I too had these concerns, hence the research into the whole process. There are some very good articles about on the internet coming from some very reputable organisations such as B12d.org and The Pernicious Anaemia Society both of which have some very good, useful information and can help allay any fears you and I may have about B12, PA, potential overdosing etc. It is a FACT that you cannot overdose on B12 injections.
Since receiving my supplies some 6 months ago, I have used 6 of the 10 ampules that I received so that is an average of one extra injection every month (on top of the prescribed injection every 10 weeks, which I am happy to report that since moving to a self-injecting regime, I NEVER miss my 10 weekly appointment with myself). However, there is a slight twist to this and this is an important one and one I was very much annoyed at as there was quite obviously an area of this condition I had failed to do enough research on.
Back in February, some 5 months ago, I was away with my family and friends on our usual yearly snowboarding trip, this time we were in Austria, normally we go to Italy and I only ever snowboard as you will no doubt know if you have taken the time to read the rest of my website. On this occasion I decided to try skiing for the first time. Long story short, I took a tumble on the first attempt, which was three days in, half way through the holiday. Twisted my knee severely and ended up in the local clinic with x-rays, brace, aspiration of blood from the knee using a needle and syringe and left there on crutches with clear instructions that when I get home I was to present to my hospital in the UK to have an MRI as they believe my ACL (Anterior Cruciate Ligament) was damaged. I duly attended the hospital into A&E and the Dr on call examined me or rather tried to examine me through the pain and my leg being totally straight and unable to bend. I was advised that the examination was important and that the only effective way to do this was under gas and air or otherwise known as Nitrous Oxide or laughing gas. I was asked if I had ever had this before, which I have not, was told what the effects would be etc and they proceeded to get on with it and through severe bouts of laughter managed to examine my knee and manipulate it into a 30 degree bend without a great deal of pain, not that I cared anyway given the “high” I was currently feeling. I will point out at this juncture by the way that on arrival and during triage I was asked what conditions and treatment I was under and duly advised about my B12 injections due to B12 deficiency and Pernicious Anaemia and it was written down on all the notes and we went through this again when the Dr arrived to examine. At no point was I advised against the “laughing gas” due to my condition. I was then given a letter and an appointment to present at the fracture clinic at 09:00 the very next day to see a specialist and to take things from there. Subsequently and for info only, I have had one operation on my knee so far for a torn mediate meniscus and am currently waiting another op to have my knee cap replaced with a prosthetic one as “there is clearly a lot of bone damage with knee cap rubbing directly against the femur”, that will hopefully take place within the next 2-3 months and can't come quick enough due to the pain and discomfort.
Anyway, I digress. Soon after leaving the hospital I mentioned to my better half that I felt very lethargic, more than normal, I felt as though I had literally hit a brick wall and I just did not feel right. We put it down to having the gas and air and it would eventually tail off. I came home, got on the settee to raise my leg and rid the pain in my knee and promptly fell asleep, where I then stayed for the next 24 hours! This was not good, I could hardly move, when I woke up I was awake for a few minutes and then fell asleep again. It was only a couple of day later when I eventually started to get to a point where I could stay awake. We discussed it and agreed that the gas and air would never have this effect. I then jumped on my iPad and started doing random searches about gas and air and any known side effects. Well, well, well, it soon became apparent than nitrous oxide diminishes any b12 in your body and anyone taken supplements should take nitrous oxide with caution. I couldn’t believe it, the first time ever in my life having gas and air and this is the result. I wasn’t angry in any way that the hospital had failed to mention this after all it is an accepted fact amongst sufferers that the general medical profession do not know enough about B12 deficiency and why should they, why should an A&E Dr be aware of the effects that nitrous oxide could potentially have on someone deficient in B12? It is not his specialist subject. Reading that back, it sounds somewhat condescending and critical of the care I received but honestly it is not, I genuinely have no qualms or redress over my visit to A&E that day.
I am however thankful of the stores of B12 I had at home. Soon after reading a number of articles about B12d and nitrous oxide.
“In patients with subclinical deficiency of vitamin B12, neurological toxic effects have occurred after a single exposure to nitrous oxide during general anaesthesia.”
The above excerpt is taken from the UK Government website on Drug Safety where the full article can be read. Please, all sufferers be careful and I can’t stress enough that you NEED to do your homework. It is after all, your life.
I duly took an injection each day for the next 3 days and each day I felt an improvement and was starting to get back to normal. Proof, if ever it was needed that B12 deficiency has a massive impact on your life. I have never felt like that before, I have felt some experience similar but nowhere near as severe as that day having left hospital. The worrying part is and again, I cannot stress enough here that I am not bitter or angry towards any medical professional, but having heard about the experiences of others and how they have had to fight with their GP’s over THEIR treatment I do feel that had I not had my own stock of B12 ampules on hand, I would have made an appointment to see my GP and in the time it actually takes to see them, would have remained in this somewhat comatose state and then once there would probably have had to argue (and lost - possibly) and then had to return with evidence from the UK Govt. website to show the effects that Nitrous Oxide can have on a B12 sufferer. Perhaps not. Perhaps I am doing my GP a grave injustice there. As I have said, I truly believe that I am in a great practice, I have a great relationship with my GP who listens tentatively and is supporting of my thoughts on my healthcare, what more could I ask for?
Once I was back on the mend I did indeed go back to the GP about another natter and mentioned the episode immediately following the A&E visit and stated that having eventually recovered from being in a coma like state for a few days that I did my research, she did say to me “that is not a surprise in the slightest Paul, I would expect nothing less” and I explained what I had found and how the gas had affected me. She was a little puzzled, again, why would anyone not specialising in PA and B12 deficiency and especially someone who does not administer laughing gas on a regular basis, if at all, know the connection between it and B12d? At the same appointment I asked her to place on my medical records a note to NEVER be given Nitrous Oxide again in ANY circumstance, which she duly did and then went on the advice that I might want to think about getting myself a medical bracelet so that others, not in possession of my notes when it matters, roadside ambulance, are fully aware?
So, where am I at currently? Well, my condition is controlled, I suffer some of the known symptoms still that are associated with PA and B12d, but fortunately not as many as others suffer and not as much as I used to suffer. I still get fatigued, I still have bouts of depression, and I have a very short fuse and get very snappy with people, especially those close to me. I awake during the night with pins and needles in my hands, arms and more so in my head, skull areas. I get very itchy feet that often feel as though they are on fire. One significant repair that I am grateful for since diagnosis and meds, is that of cold sores. Boy, they are a pain! Constant cold sores in the corners of my mouth that would clear up with ointment only to return days later and the cycle would begin again to the point where it just felt like one continually episode of cold sores around the mouth. I have not had a cold sore now for about 15 years or so – happy days!
I do however, suffer from lumps on my tongue, which look like puss filled lumps. I mention these to my Dentist who says that I may be biting my tongue whilst asleep. I said could it be the PA condition causing them? You see, we have a tendency to attribute most, if not all of our illnesses to B12d, I think it is a habit you inadvertently fall into without control, she found the concept “interesting” and did not rule it out. Look on the net under B12d/PA symptoms and lumps in the mouth/tongue is cited as a possibility. Coincidence?
I have five children, although three, from my first marriage are now grown up and living good lives for themselves with partners. The eldest, Son, recently had a spate of passing out. The last time he passed out in the bathroom and smashed his head on the toilet cistern, causing a deep cut to his head resulting in a visit to hospital for treatment and stitches. He is 28 years of age now, 27 when this happened. Guess what I did when I was about 14? Yep, you guessed it, exactly the same as my Son, smashed head on toilet cistern, sever cut to the head and stitches. The only difference is that I actually broke the toilet cistern and caused a flood but that’s another story. The other significant difference is that I now know what the possible cause of mine was. Although back then of course I was not diagnosed as having B12d/PA and that aspect was left untreated. I was just told that I suffer from low blood pressure and I will “grow out of it”. I had a further 5 or so episodes since that first one where I actually fell and passed out. It would have been a lot more had I not learned to recognise when they were coming on and take necessary preventative action by sitting down or lying on the floor until the wave of dizziness elapsed. Again, read up on the symptoms about B12d/PA affecting blood pressure and more so the lack of oxygen being pushed through the blood cells. Coincidence?
At the time this was happening with my Son, I sent him the link for the Facebook group mentioned above and asked him to have a read before going to the Dr, which the hospital asked him to do for bloods to be checked etc. He joined the group, I badgered him to get all his bloods checked and to ask for a print out of the results to take away with him (something that is crucial for any suffer to do or indeed for anyone who feels they may have B12d/PA). He duly did this and he also mentioned to the GP or PN, not sure who he saw at this point about his Father having PA and the possibility of it being hereditary and guess what? Yes, dismissed out of hand. Why? Because not enough medical professionals know enough about the symptoms, conditions, treatment, side effects (caused by other aspects, not the treatment itself) and all manner of B12d/PA related situations.
A little frustrating to say the least. How does all this affect my life?
Well, it doesn’t to be honest. Yes, I have to inject on a regular basis and whenever I feel the need to through lethargy etc. but it is only similar to that of a diabetes sufferer. In fact less so because insulin has to be administered, in some cases a lot more frequently than my B12. I still have a life, I still enjoy life, and I am here to tell the story, albeit a somewhat long one, my apologies for that. I still have symptoms, albeit reduced somewhat and I am grateful that it is becoming more and more recognised and accepted as a routine requirement to inject. There are a number of discussions going on in parliament, both in England and in Scotland, where I reside. This is to try and increase the knowledge of the medics who are supposedly treating us. There are have also been a couple of petitions started, that have raised a lot more awareness around the need to have the B12 supplements, injectable type not oral, remember with PA and low intrinsic the stomach does not absorb B12 naturally and so oral supplements are inefficient, available as ampules over the counter rather than by prescription only.
Note – Hydroxocobalamin is a vitamin and NOT a drug, why would it not be available over the counter.
I am going to close off now as I think that is probably a lot more than just an insight into B12d/PA and my story. I will leave the subject open though and may well update this from time to time and why not? I will leave you with one thought though…..
The rich and famous in this world are being tempted by “cash-quick” organisations to engage in the need to have Vitamin B12 injections to help them with fatigue, tiredness and the stresses of their busy, everyday lives. For this privilege they are paying upwards of hundreds of pounds PER injection. It is not because they need it. It is not because their body craves it or requires it to survive, it is a fashion statement, it is a fad, it a diabolical liability and it needs stopping. Sufferers like me have to plead our cases for a required treatment and these idiots take them like they are popping a smartie to the back of their throat. Absolute nonsense!!!
A sufferer's Needs
Gastric parietal cell antibodies
Crucial impact on the body