Hi, I'll give some background information for you. Diagnosed with Functional B12 deficiency in Dec 2016, after being really unwell, and suffering a multitude of symptoms including severe neurological ones. My mother has PA. I researched and fought my corner, and I was given loading doses, and then had weekly injections for a few weeks, and then monthly. So I did what a lot of us do and took my health into my own hands and bought my own supplies. Since then I have been SI-ing: every 2 days for around 5 years, and now every 3 days. I have also been getting a prescription for B12 ampoules: first weekly, and then monthly. I fought for these as I wanted it on my record, and I hoped it would inform my GP, and the surgery. However, they have now gone to 1 ampoule every 3 months. Like I said I buy my own supplies so their ludicrous offering of 1 every 3 months is not vital to me. But that is NOT the point!! Therefore, I am in the process of composing a letter to my GP, my surgery, and my MP. I have quite a bit of knowledge regarding B12......well, I have had to do my own research over the past 7 years. I know way more than my GP, although she would argue otherwise of course!
I would just like some reassurance that my knowledge is medically accurate. It is my understanding that I depleted my B12 stores, for whatever reason, and that I cannot absorb B12 via food or tablets. The injections supply with me with a regular supply of B12. However, this source of B12 is different to those who are able to absorb B12 via food and tablets and thus the B12 from injections is not stored in the liver: the body uses what it needs and excretes any excess. This supply needs topping up on a regular basis just the same as if someone was getting their B12 via food or tablets. Therefore, those who can absorb B12 are getting their B12 on a daily basis, whereas those who cannot absorb it are expected to function on the measly NHS offering of 1 injection every 3 months. Is that accurate about the liver stores etc?
Thank you. I know it's a long winded question but I want to be 100% accurate in my letter. I am very confident on other aspects. And I am more than confident that me taking my health into my own hands 7 years ago has allowed me to live, rather than just exist!
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BeachArt
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Well done you for taking matters into your own hands. 👏
Exist is the correct word, most are given the one cap fits all of a 3 monthly injection, Others if you twist their arms round their back occassinally managed to squeeze to monthly out of the NHS.
I have got to go off line but others will assist and offer advice.
Lots of people do not quite understand that your Medical Records are legal documents.
So, that blood result you had in Dec 2016 is proof of diagnosis. Like your bank account which would have a ‘transaction’. Then every single loading dose has a time, date, given by whom, batch number, expiry date. Then every week you had an injection produces more data. Then when you went to monthly generates more information.
You have a huge amount of ‘data’ in your Medical Records just from B12 deficiency. So, it is on your Records, the data has not gone anywhere. Many a time, I have heard people say or write I want it on my records. It is.
Every single appointment, prescription for Hydroxycobalamin is an ISO 15489:1:2016. Section 205 of the Data Protection Act (2018) defines what a Medical Record is.
Yes, many of us know more than a Generalist on PA/B12D who has to know thousands of illnesses/diseases and medications.
Now, you admit, I buy my own supplies so their ludicrous offering of 1 every 3 months is not vital to me.
The cost to most surgeries is the £20.00 (approx) to pay the nurse.
You are correct in that due to malabsorption we need hydroxycobalamin injections. We (our community) do not store it in our liver.
Now, what are you trying to achieve with your letter ? The best are concise and objective. The GP Partnerships themselves are fed up due to their budgets being cut. They are concerned about paying administrative staff and the increase in electricity prices. One particular doctor does not mince their words and uses expletives towards the Political Party currently in power. This is why Sleepybunny and I suggest writing to your M.P.s. It is a top-down approach.
So, now you know a bit about Medical Records - is your GP aware you SI ? Because you can have it added to them.
Narwhal10, when I say I wanted it on my record I meant that I didn't necessarily need the injections they were giving me as I had my own supplies, but I took them because I wanted it in my record that I was having them. I know how medical records work, hence why I took the prescription from my GP and used theirs alongside my own supplies. As for the cost to the surgery, I was shown early in how to self inject so there was no resources used at the surgery, other than the time it took for my GP to do each prescription.As stated in my original post I will sending a copy of my letter to my MP too.
What am I trying to achieve with my letter you asked. Well, I want the medical professionals to sit up and take notice of the issue. For them to be aware of the suffering of so many people, and the misdiagnosis and insufficient treatment given.
Great, BeachArt, I found it difficult to determine what points you wanted to get across.
So, you had a misdiagnosis as did many of us. So, under GDPR (2018) The Right to Erasure which I am sure you already know but others reading may not, any misdiagnosis must be removed. However, pointing out the delay in diagnosis, original diagnosis, numbers of years to proper diagnosis and a poor Quality of Life as a consequence. (BeachArt which is exactly what you are trying to achieve, for the Medical Profession to take notice and to stop the same fate happening to others). Plus, the one size fits all. Even better, may be suggesting to your M.P. would they consider discussing Hydroxycobalamin being available Over The Counter. Entirely, your choice.
It has been discussed before in the House of Commons at 4.05 p.m. on 26 May 2021. However, I have noted many errors in the transcript.
I agree in some respect but unless we challenge nothing is going to change ! Yes it is mentally and physically draining but sometimes we feel the need to express not only our concern of the lack of treatment but our need for recovery. Fingers crossed there is no knock back.🤞
Charks.....I am in a very good place both mentally and physically. It may be a waste of time but if people don't challenge the medical profession then they will be under the illusion that 1 injection every 3 months is enough.
I do understand that we need to raise awareness of PA and B12D and if you feel up for it fair enough. But I believe that stress is a real danger for us with PA/B12D due to our high levels of anxiety. I go out of my way to avoid it.
I agree with you. If it goes unchallenged then they will be under the illusion that 1 injection every 3 months is adequate. If we don't fight for proper treatment and awareness then more people will continue to suffer unnecessarily. It may be a waste of time but at least I will know that I tried.
Do check its not a pharmacy admin error as 'everyone ' has 3 monthly !!
If b12 is stored in the liver as they may say.
However you cannot access it as thd same complicated process your body cant do in thr first place .
Also I've found keeping the letter short.
State on what grounds is your treatment bring withdrawn ?
State your current treatment manages your symptoms.
Why stop it.?
Mentioned the PA Society has information fof professionals.
Book an appointment .
I've unfortunately had to do this several times fof myself and mother also helped one of my daughters to keep the treatment of different frequencies for each Indvidual.
Its a positive thing to do.
Especially as you've your own stores as well as takes the anxiety out of it.
So are you saying that we may, or may not, have stores in our liver? But even if we do we cannot access it. Can you explain in relatively simple terms why we cannot access it?Thank you for you advice
The B12 stores are in your liver and if you're injecting they are certainly full. However, the method of uptake, as Jillymo stated, is through the small intestine. From your liver is a constant trickle of B12 through your bike duct into your duodenum (1st part of your small intestine). This is where it normally would bind with Intrinsic Factor (IF) protein. This B12 binding with IF is crucial to B12 being absorbed in your terminal ileum (last part of small intestine). If you have PA then you have little or no IF and thus the B12 will just pass on through without being absorbed. The same malabsorption problem with ingested B12. I don't see in your profile that you've been diagnosed with PA or maybe I missed it. But there could be other reasons besides lack of IF such as prolonged use of the drugs Metformin, or a PPI. Most doctors or GPs do not know how B12 is stored and recycled by your body. Best to try and educate them as you're trying to do so with your letter. For the letter have a chance to be effective you'll need to keep it positive, concise, and well referenced identifying all of your legitimate sources. Also, at the end ask for it to be placed in your medical records. As Narwhal10 suggested. When I wrote these I put my patient identifying information at the top, the same info you might find at the top of any of your medical records. Following that I add "patient prepared"
Btw, my doctor originally tried to stretch out my B12 doses... He suggested that since my serum B12 was maxed on the test that my liver stores were replenished so I could go a couple of years without injecting again. As we know he was completely wrong. Once I educated him I've been injecting weekly with prescription for the last four years.
Thank you Rexz. So are you saying that the liver stores, although probably once depleted, are now full because of the injections, but it is the malabsorption of the constant trickle that is the issue? I have not been diagnosed with PA, but with Functional B12 deficiency. As I understand it that is a problem with the proteins that help transport B12, so malabsorption would be the issue there too. My mother has PA. Thanks again
Yes, exactly. Our recycling of B12 from blood serum to liver stores is working but the breakage in the uptake from liver stores back to serum goes through the same process as ingested B12 so your liver can trickle B12 all day long and you'll get nothing from it as the glycoprotein Intrinsic Factor is missing. In this case the only B12 stores that are useful are that which is in your blood. If your mother has PA it is not unreasonable to think you may also have PA. From my understanding, and maybe someone else on the forum can help here, is that if you JUST have functional B12 deficiency then that is a deficiency in how your blood is transporting and your cells are able to use B12. In other words "I think" you can have functional B12Def and your B12 uptake can be working fine? Also, here your serum B12 levels may show normal but your MMA and Homocysteine would be higher than normal.
Thanks again. I may not go too in-depth with all the medical jargon in my letter then lol. To be honest, I received 2 'possible' diagnoses: Functional B12 deficiency and abNeg PA. To be honest, I'm not totally sure which is on my record. I should really find out......Anyway, the situation is the same: inadequate treatment from the NHS, which means I have to treat myself and purchase from oversees. It horrifies me how patients with PA/B12d are routinely misdiagnosed and under treated.
I have been asked why I am doing the letter. I am doing it for the me of 7+ years ago. The me who had to fight to get a diagnosis, and then fight to get appropriate treatment. I am doing it for the tens of thousands of others who are under treated. I am doing it for those who have yet to be diagnosed, and who will be fobbed off with 1 injection every 3 months. If things go unchallenged then nothing changes. I fought for my diagnosis, and my initial treatment. I sought the help of a fab Facebook group, and the Pernicious Anaemia Society, and took my health into my own hands. All of that has enabled me to live my life, to work, to get back to the gym, to sustain a happy, healthy, loving relationship, to travel, to have fun. I want others to be able to have the same. Without my fight, and the help along the way from PAS, and the other FB group, I would be severely unwell, disabled, and merely just existing. So, whilst I appreciate my letter probably won't change anything, I will be doing something to raise some awareness within the medical profession and that, to me, is always a good thing.
For what it’s worth I completely agree with your reasons for writing to your GP etc and wish you well. 👊🏻
If you don’t mind, would you be able to share more details of how you came to be diagnosed with functional B12 deficiency, all those years ago? Presumably it was a combination of symptoms, maybe blood tests and an abundance of bloody-mindedness?
J972, I had been unwell for some time, and my neurological symptoms were worsening. I had severe paraesthesia: constant pins and needles, large parts of my body were numb, and I was experiencing very unusual sensations. My B12 serum level was within range, as is often the case. So I asked for all my recent blood test results and discovered that my MCV and MCH were both high, and marked as abnormal but no one had mentioned it. There were a couple of other indicators in my blood that were abnormal, and when I googled these they could be attributed to B12 deficiency too. So, armed with information, print outs of my blood tests, a list of my extensive symptoms, and noting that my mother has PA, I saw a different GP and requested a trial of B12 injections. I fought my case, and got the injections. At my next appointment the GP could see the improvements for himself, and listened intently when I explained how I was improving. The evidence was there, there was no disputing it. And voila, I got the diagnosis!
I think you analysis is correct. I was particularly struck by your saying that non PA people absorb B12 every day. We do not. A very useful explanation and rationale for much more frequent injections.
i did injections for my husband every other day as GP refised in spite of consultant requests from neurology and gastro enterologist. Eventually we paid to see B12 consultant who wrote saying as they had not responded for 6 months to any injections then not done required frequency my husband might have permanent nerve damage. He said he needs B12 for life. We then got request from Go to ask if I was happy doing the injections. I said I was. They now provide for every other day on repeat script. Of course we bit needles and syringes. Luckily there is no permanent damage but it certainly gave them a fright.
BeachArt The injections supply with me with a regular supply of B12. However, this source of B12 is different to those who are able to absorb B12 via food and tablets and thus the B12 from injections is not stored in the liver:
Yes injections supply us w/ regular supply of B12.
Not exactly:supplemental B12 "finds" its way to the liver but if you cannot absorb B12 from food, you "cannot" access the liver stores. If you could access from stores, you wouldn’t need injections.. I am just clarifying some B12 will find its way to liver, but we cannot use because we "cannot" access. Please continue to speak up, regardless of who listens.. I do this all the time to get the word out..
You bring up an interesting question, and although I have done a lot of research on B12, I have not found good answers to this. If people with B12 get enough B12 injected, can we store some of it away? What is true is that people can go for varying amount of time before they start seeing symptoms again. I personally think that an ideal schedule is one for which the symptoms are absent. Three weeks was too long for me. I am currently on a weekly schedule and that is working for me. I have seen others here who need it more often. And too many people who are not getting it frequently enough to avoid having the symptoms return in between. I suspect that once per 3 months is not often enough for a lot of people with PA. Since nerve damage can end up being permanent if it goes on too long, is it not wise to give the injections close enough together to that the neurological symptoms do not recur?
Good for you BeechArt , I am currently struggling between my GP and Haematologist neither seem to recognise the seriousness of PA and both would prefer 3 monthly injection which do not help me at all. I keep reminding both my mother and 3 sisters all diagnoses with PA in their early 20's and 30's so I feel (apart from plain to see symptoms which they ignore)I need better treatment, like so many more who has had their quality of life curtailed by ignorance and finance. I am waiting results for MMA and homocysteine , the Haematologist has already decided 'if these are normal, B12Dis unlikely' - I feel functional PA is more likely, 'but who am I, ONLY THE PATIENT AT THEIR MERCY'.
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