Newly diagnosed as B12 deficient afte... - Pernicious Anaemi...

Pernicious Anaemia Society

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Newly diagnosed as B12 deficient after suffering symptoms for at least 30+ years & possibly since childhood!

CupCake5 profile image
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***Warning - Long post alert! I really appreciate anybody who makes it to the end & doubly appreciate anybody who replies! ;-)

I have just been diagnosed as being B12 deficient & also Vit D deficient. I was told that my B12 was 76 & then 89 two weeks later & that a reading of 130 would be considered as low so I would need a course of six injections over two weeks followed by injections every three months thereafter. My Vit D was 21 & she said it should be above 50 & considering we are at the end of the summer when it should be at its highest that was worryingly low. She said I had tested negative for PA but my diet suggests there is no reason why I should be diet deficient. I have been on Omeprazole though for many years which I believe can hinder absorption (but I’ve suffered with the same symptoms for far longer than I’ve been taking the Omeprazole); I have asked several times over the years if I needed my B12 checked as I was on it long term & that was what the patient information leaflet advised but that was dismissed as unnecessary! So annoying! I have suffered from varying degrees of pain/numbness/tingling/altered sensation in varying parts of my body (initially the tops of my feet which started in the region of 30 plus years ago) & I don’t think there is any part of me that hasn’t been affected at one time or another. I had pains & odd sensations in my knees as a child & other pains that were passed off as growing pains. At different times I have seen GP’s who have looked at one pain/symptom or another & have ranged from advising me to take paracetamol &/or use ibuprofen gel to ordering various scans & tests to the point that with my shoulders the surgeon was at a total loss as to the reason I was experiencing the pain that I was & said the only option left to him was to open me up & have a look to see if there was anything he could do but that he didn’t think he would find anything! I declined his offer & have soldiered on for years modifying what I do & how I do things in order to keep it as under control as I can but I am never pain/symptom free. No test has ever concluded anything so I always go away & soldier on until the next time I reach breaking point & then I go back again but to no avail. More recently the symptoms have worsened in my hands & fingers along with fatigue & memory problems which have also been an ongoing issue for as long as I can remember! Other symptoms that I don’t know whether they are connected or not are palpitations, fast heart rate & what I can only describe as feeling wobbly on the inside & having a fluttery feeling in my chest - I’ve been told after several ecg’s that I don’t have atrial fibrillation. I’ve also always suffered with the feeling that I can’t fully inflate my lungs with exercise having always been particularly problematic (going back to my days in PE at school) & particularly if we have a period of extreme heat (but even without extreme heat I really don’t cope with the summer at all well & I avoid the sun whenever possible which would explain my low Vit D!). Poor memory function has been another long term issue which for periods of time has left me literally unable to string a sentence together & the people around me have had to fill in the blanks of the odd few words that I could manage to splutter out! It has worsened significantly in the last few years. This all goes back to when I was in my early twenty’s & I was diagnosed as being depressed... I actually laughed at the doctor when she said that! However, she was very insistent & I was put on anti-depressants. I was further diagnosed with post natal depression after the births of my first two children but my symptoms were the same as they are today... I do not believe that I was ever depressed, initially - I never did! I may have become depressed as a result of all the pains & symptoms that I was suffering & not being listened to & not having them acknowledged as anything other than it being something in my head but I definitely didn’t start out depressed! Interestingly I have read that entonox can deplete the body’s stores of B12 & my symptoms were particularly bad after the birth of my second baby when that was all I used... & lots of it! Following the birth I had numbness & tingling in my hands & pains in my shoulders where I couldn’t lift my hands to wash my hair & horrendous fatigue & it affected me picking up my baby especially first thing in the morning. Another doctor told me the pains, numbness & tingling in the tops of my feet were caused by the shoes I was wearing... I stopped wearing those shoes but still have the problem now aged 56! Is itching related in any way with these deficiencies? I have always been more itchy in general than the people around me! That has also worsened in recent times & I have had what appears to be an allergic reaction around the front of my neck & upper chest area particularly where it is not covered by clothes which made me wonder if it was sun exposure related but firstly I rarely go in the sun & it started last December a week after I’d had surgery & they thought it ‘may’ have been a delayed reaction to the anaesthetic drugs but it’s been ongoing at a low level ever since with flare ups that result in raised bumps/redness & immense itching for no obvious reason. Even Fexofenadine 180mg taken 12 hourly rather than 24 hourly barely takes the edge off it. If I get hot or wear a top that covers/touches it that makes it worse but there are times when I’m feeling cold & need to put something warmer on but it makes it flare up... catch 22! I have also suffered from ‘IBS’ ever since I was a child! Not convinced it is IBS... my daughter has just been told she has Crohn’s or colitis & is currently waiting on further hospital tests to confirm which one it is. Her GP asked about family history as it tends to run in families & suggested I should go back & ask to be re-investigated. In recent years I have had a number of bouts of severe tummy pains/problems coupled with fainting episodes where I sweat profusely to the point that on one occasion I was convinced I was having a heart attack but no reason has ever been found. There are a number of close family members with ‘IBS’ too who also suffer with symptoms that could well be B12 deficiency. Obviously I’m relived to have finally been diagnosed & starting on a treatment plan but I’m feeling very let down that it’s taken so many years to reach this point. Could I really have been B12 deficient pretty much my entire life & it never have been picked up until now?! I am very grateful to my current doctor who reassured me that we would get to the bottom of my symptoms & said that it wasn’t all in my head - such sweet music to my ears! I had my first injection yesterday & I will start the Vit D today & I’m hoping for a miraculous response! I have asked for another consultation with my doctor though because I have also read that for B12 deficiency with neurological involvement the injections should be on alternate days until there’s no further improvement in symptoms rather than just the six over two weeks then two monthly thereafter rather than three monthly. She also didn’t mention referring me to a haematologist or a neurologist which I’ve also read should happen if there is neurological involvement. Any thoughts or advice from anybody will be very gratefully received, thank you.

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fbirder profile image
fbirder

OK, I didn't make it to the end (please break text into paragraphs, my poor eyes cannot follow a solid block of text on screen). But I hope I made it far enough -

With such a low level of B12 it's no surprise that you're suffering from neurological symptoms. That's the numbness/tingling in your feet. Other common symptoms are depression, brain fog and memory problems.

Such symptoms demand a different treatment regimen to that your doctor is using. As her to look in the British National Formulary (she'll have an online copy). The relevant page is here - bnf.nice.org.uk/drug/hydrox... and the relevant section says -

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

Secondly, she should be aware that there is no test that can show you do not have PA. There is a test (for Intrinsic Factor antibodies) that can prove you do have it, but a negative result doesn't. Download this - onlinelibrary.wiley.com/doi... - and highlight the sentence that begins "IFAB is positive in 40–60% of cases" on page 500. It says that half of people with PA give a negative result for that test.

CupCake5 profile image
CupCake5 in reply tofbirder

Sorry fbirder re the lack of paragraphs! 🙈

I don’t understand how it could have been missed for so many years & seeing numerous different doctors! My symptoms are not new just currently more pronounced as they have been on numerous previous occasions when I’ve been to the GP but to no avail! I am euphoric that I have finally been diagnosed!

Thank you for your reply. You have confirmed what I was thinking re the regimen that she has suggested & I have another appointment booked to discuss that & I will also query the negative IF antibody reading.

I’m a little confused as you make reference to page 500 but your link only appears to have 18 pages?! I haven’t managed to read it yet as it’s very tiny on my phone & I currently have information overload & my memory/brain fog is shocking atm so I will look at that a little later but I appreciate the info, many thanks.

fbirder profile image
fbirder in reply toCupCake5

The 500 refers to the page numbering in the original document.

It's well worth reading. It's written by the British Committee on Standards in Haematology (I like to think of them as the Biggest Brains in British Blood). And doctor's are going to take notice of it as it's a real scientific paper from a prestigious journal. Well, a good doctor should.

Some of the advice on treatment has been updated in the BNF since they wrote it, but the rest is pretty good.

wedgewood profile image
wedgewood

Just sounds like classic B12 deficiency/ pernicious Anaemia symptoms . I hope that you get real benefit from your loading doses of B12 . and that you can get the alternative day injections until the neurological symptoms either disappear or fail to improve . Then injections at a regularity that keeps the symptoms at bay , because they will start to return if you don’t get them often enough .

IBS symptoms can be caused by the lack of stomach acid which comes with Pernicious Anaemia . In P.A.patients , antibodies are produced which destroy the parietal cells in the stomach .Parietal cells produce the Intrinsic Factor and stomach acid which are essential for the breakdown and absorption of vitamin B12 . There is a test for the antibodies, but unfortunately in 50% of PA patients , it produces a negative result ,so cannot be relied upon . Also unfortunately many doctors do not know this and therefore wrongly assume that a negative result means no P.A. diagnosis . The symptoms must be treated , or irreversible damage can be done .

Also ,all P.P.I. ( Proton Pump Inhibitors ) e.g.preparations e.g. Omeprazole, negate stomach acid . if taken for more than a few weeks .

I wish you all the best in getting the correct treatment .

CupCake5 profile image
CupCake5 in reply towedgewood

Hi wedgewood, many thanks for your thoughts. Yes, I am hoping to get the support I need from my GP to make sure that I manage to get the best treatment available. I am concerned that I will not have sufficient & will continue to suffer & have to do battle to get what I need as I have already picked up that that is often the case.

Interesting re the IBS being caused by the lack of stomach acid caused by PA & that I am on long term Omeprazole because they said I was over-producing stomach acid... I may query the need for that. It was originally prescribed as it was deemed that I was over producing & have reflux which was causing me to cough constantly. I use gaviscon at night & I'm wondering whether that may be sufficient to control the reflux as I think that’s when it happens. Maybe the Omeprazole is doing me more harm than good! It’s such a juggling act!

Thank you 😊

wedgewood profile image
wedgewood in reply toCupCake5

I had some reflux and IBS symptoms before I had any B12 injections . After a few weeks of B12 injections and the probiotic , the reflux and the IBS symptoms disappeared . IBS returned briefly once, but went away after some probiotic doses .I’m not saying that the probiotics would work for you — we are all different . But even if you did take some or eat probiotic foods , no harm would be done .

Gaviscon will also neutralise any stomach acid you have, but not to such a degree as a PPI.

CupCake5 profile image
CupCake5 in reply towedgewood

Time will tell how many of my symptoms improve with the B12 treatment! Here’s hoping for a great response!

Marz profile image
Marz in reply toCupCake5

You have already had great advice from members here - so I was just thinking whilst reading your post if you have had your thyroid correctly tested ? Many members on Thyroid UK are diagnosed with high stomach acid when it is low acid - as symptoms can be the same. I once read a research paper about Low B12 and coughing - low B12 can affect nerve endings ...

Low thyroid and B12D share many similar symptoms - and yet again diagnosis - understanding and treatment is poor.

I have B12 issues due to surgery and have Hashimotos ... 🌻

CupCake5 profile image
CupCake5 in reply toMarz

Yes I have had my thyroid checked (a number of times over the years) within the most current batch of testing along with many other things - she has been very thorough I’m glad to say.

Interesting about the low B12 & coughing/nerve endings...

Thank you for your thoughts 🤗

Marz profile image
Marz in reply toCupCake5

Do you always obtain copies of your test results with ranges ? Sadly NHS testing is inadequate and so often only theTSH is tested - this is a Pituitary hormone and does not tell you how your thyroid is performing. The most important test - the FT3 - very rarely done - SIGH !

Test results are legally yours. Surgeries should have on-line access to patient records.

Private testing is available with kits sent to your home - used by 1,000's on Thyroid UK where there are 110K members. Link below ...

thyroiduk.org

in reply toMarz

Correct. Thyroid stimulating hormone is not a good test and it's the first one most doctors do. Unfortunately thyroid is much like pernicious anemia in the sense that it is under diagnosed and the diagnostic tests are poor.

it seems like the place to look these days are patient-led movements not doctors. Patients actually know what works and they're not afraid to speak their mind.

Marz profile image
Marz in reply toCupCake5

pubmed.ncbi.nlm.nih.gov/212...

Link above about B12 and coughing ...

flossieb12 profile image
flossieb12

Hello, I was moved by your post and can identify with a lot of things you say. I've just been referred for a blood test which could show B12 deficiency. I won't go on about me apart from saying that all my pain/problems result from spinal operations over the last 9 years, initially a bacterial infection on the spine. Why I wanted to reply was that over this time I've learned that you HAVE to be pro-active and push/request things ( like the referral to a neurologist you mention at the end of your post, though to be fair to the GP she may suggest this later after seeing how you respond to the injections) The medical profession do not give us credit for knowing our own body and therefore listening to what we say--totally frustrating. We are in general far to in thrall of their expertise and status. We need to question more and to make them listen to what we say about our own bodies. This is a bit of a rant- forgive me. I just really wanted to say, Good Luck, Have confidence to question and state your case and Look forward to the future. Very best wishes to you

CupCake5 profile image
CupCake5 in reply toflossieb12

Flossieb12 sounds like you’ve had a rather nightmarish nine years! I totally agree with you... I have spent too many years being fobbed offdesoute knowing that there had to be more to what was happening than the GP’s were acknowledging... I just need to be careful that I don’t get my GP’s back up as she is on my side & I’d like it to stay that way! I have already made it perfectly clear that I do a lot of research & she has been very good at giving me all the info I’ve asked for so I’m quite happy that she does have my best interests at heart.

Thank you & best wishes to you too as you await your results 😊

Nackapan profile image
Nackapan

I be honest and couldnr read it all.

However . My bit d levek was also 21 my b12 106 I aksi noted your age and I believe I crashed with the menopause.

It will take time but you do need the correct treatment and to keep it going.

Also to have regular blood tests . I needed loading doses of vitamin d prescribed. Also had to raise my ferritin levels.

So 3-4 monthly blood checking levels then finding a msi sentence doses. Not b12. as once on injections does not need testing. Only problem I've found with that is ti have my folate levels checked the labs do b12 with it automatically. Good at the start. Keep a diary and copies of your blood results.

Many many ate not diagnosed until really poorly. Hope you will pm the road to improvements very soon.

I could have written that text! I gave up my A Levels because I was so fatigued all the time. My level when diagnosed was also similar -129 and Vit D 21 even though I was living in India! PND after all my children and anti-depressants for a period of time. I'm 51 now and have my life back! I've never felt so well to the point that I've gone back to work and run 40km a week!! I will be ever grateful for B12 injections, they've given me back my life! I hope you soon feel the same ♥️

contentedmum profile image
contentedmum

Wow what a story. I’m so sorry to hear you have struggled with these symptoms for so long. It looks like you have a lot of replies so excuse me if I repeat anything but after reading to the end of your post I now don’t have the energy to read the replies and respond to you.

I just wanted to draw some similarities to see if it’s something you’ve already thought of/discussed. A couple of years ago I went to my gp with heart palpitations, dizziness and hot flushes. They tested me for peri menopause. You are a little older than me so not sure if you have already started your perimenopause? Just a thought.

Also I have been vit d deficient for quite a few years. Never picked up until I started asking for printouts. I took high dose from

The chemist before Xmas and for a few months I was off the planet amazing. More energy, feeling happier etc. Over lockdown it has clearly changed and I’m now paying for private help from a functional medicine gp. She has tested me for many deficiency’s and turns out I’m calcium deficient. I had a lot of dairy but apparently you need vit d to absorb calcium. Have you had that tested? I suffer from sore limbs and muscles and probably bones. I struggle with pain when I have climbed the stairs or a hill.

Itchiness and hives? I have super itchy skin at times and avoid sunlight, eyes struggle with bright sun light and super sensitive hearing. Anyway I have many allergies and struggle to produce DAO so I used to get bad hay fever and allergies to dust and be in antihistamines 6/7 months of the year. I’ve recently done and autoimmune paleo diet together with a low histamine diet. Just a thought that maybe the itchiness is related to histamine?

I really do hope you get to the bottom of what is happening and finally start to get some answers and relief. I don’t know if you have watched ‘diagnosed’ on Netflix but it gave me hope that there are people willing to listen. Really interesting stories on it. X

Happysmile profile image
Happysmile

I too can relate to your history. I would say, I have needed the 3 injections a week now for about 2/3 years and still need them. My supposed ibs disappeared totally after the loading doses and healing generally is still continuing. If I don’t do the injections at this frequency my symptoms come flooding back. Good luck with your treatment and do what you have to to get the treatment you need. It has become clear to me that we have to take control of our own health, as the right support is not always out there.

NieuwOndaatje profile image
NieuwOndaatje

So sorry to hear yet another all too "familiar" story about long suffering B12 deficiency in patients that has remained undiagnosed for many many years.

I don't think your story is unique, far from it. It is a sad legacy of the current crisis in medical care for patients with chronic underlying conditions and often a range of multiple, complex, unexplained symptoms.

Our health system is failing so many patients, like us, who have "undiagnosed" chronic conditions, often for a lifetime due to the revolving door policies in GP surgeries, where Doctors rarely have more than 10 minutes to spare for each of their many patients.

As a result, we are left to lurch from one appointment to the next, often less than one available every month, with a raft of prescriptions and instructions to "try it" for a few weeks and come back if you still have symptoms!

The health services are under pressure for urgent, critical and emergency care, including A&E, and it seems to me that the more traditional holistic "diagnostic" services, requiring time and effort to get to know a patient and understand the full spectrum of their symptoms is crowded out by scarce resources and unresolved.

I have read the full text to the end, and it could have been written by many of us on this forum, shadowing our experiences and as a mirror to our suffering over the years. I suspect that I have also been deficient in B12 and Folate since early childhood, with the myriad of familiar neurological and other symptoms like fatigue, brain fog, memory and concentration problems and a family history of Digestive and Malabsorption issues like Chrons and Coeliac disease.

I have also had several series of B12 injections, as a result of low B12 and folate in blood tests. I take daily folic acid supplements but B12 shots are stopped as soon as my blood levels are back in the "normal" range. It takes up to a year before my blood tests are back below 150 and B12 shots are resumed once a month. Usually I have 3 shots before my blood tests are back at "normal" levels.

It's a rollercoaster ride of emotions for me every time I hear another all too familiar story about a long suffering B12 deficient patient scouring the internet for help and advice on their journey to become self advocates for their health and wellbeing. We are all warriors to our cause and welcome to the extended family.

I have found this site unbelievably helpful to both understanding the range of symptoms and treatments as well as the latest research and advocacy for better patient care. Hope you find it as helpful as I have over the past few years.

You may also want to travel through the related posts on this site under the Headline"Can Neurological symptoms develop years after being treated for B12 deficiency" which include some very useful links in the comments and posts sections.

Thanks again for all your help, advice and support to the broader Health Unlocked community. You are all such a help to guide us on our journey back to health.

Much as gracias Amigos!

Forensic6 profile image
Forensic6

Read it all. I sympathize, I have had something similar.

I have researched it . Here are some relevant facts facts which you may know already

Dee011960 profile image
Dee011960

It took my doctor 24 years to discover, I had gastritis when l was 18 *wasn't treated with antibioticsat the time, l had Shingles at 20 and was in low mood (doctor says l was depressed) 'baby' blues after first child, which was a c-sect, I then had 5 other stomach operations also told l had IBS, I was frustrated with all the investigations, and not getting any treatment, like you music to my ears that it was discovered l had deficiency of B12 - request a copy of the blood results etc, I say this as a warning, as my original gp retired, the surgery went from paper to electronic records, they have changed their system twice and now they cannot find the blood results, so when l changed gp they were okay to give me injections, but now due to Covid-19 have stopped, most of my symptoms have returned even using the patches!

in reply toDee011960

Interesting you said shingles. I came across a video on YouTube an old American doctor... He was saying how it was well known the generation of his father( who was also a doctor) that b 12 shots stopped shingles symptoms within a few days.

He ends up going to this information session about new drug for shingles and asking them about B12. They basically dismiss him and never look into it.

This video used to be on YouTube but I can't find it anymore.

Forensic6 profile image
Forensic6

I have read it all. I sympathize as I have experienced something like it. I have researched it. Here are some relevant facts. which you probably know.

Scientifically it has now been shown that B12 deficiency cannot be reliably measured by blood test. It is not recommended to try. Now the diagnosis should be made from the clinical picture and tested with supplements of vitamin B 12 ( see NICE on the subject).

Scientifically it has been shown that omeprazole blocks the stomach from making acid. However this acid is needed to free B12 from food so that it can be absorbed. If the omeprazole is taken for a long time, i.e. years, B 12 deficiency occurs.

If neurological symptoms occur whilst taking Omeprazole long term then vitamin B 12 deficiency should be immediately suspected and supplementary B 12 should be given to see the effect. In the U.K, this is normally by injection but some countries are using tablet at 1000 µg, (1mg,) or more daily ( as I do).

If this is detected early then a positive result may appear quickly (weeks or months).. If it is tried late (as in your case and mine) then the outcome seems , by my experience and that of contributors to this site, to be much more complicated. What I and others have experienced, with the supplements, is a severe worsening of neurological symptoms which may go on for 1 or 2 years before a slow recovery over 2 yrs or so. I am at the stage of getting worse still. Another possibility is that, after such a long time, there may be no improvement. I could not find any scientific papers about rates of improvement. I have had to rely on the experience of contributors to this site giving their experience.

I was referred to a neurologist but at that time it was still thought that a blood test would be helpful. My serum B 12 fell in the normal range. In consequence the wrong diagnosis was made.

Good luck!

in reply toForensic6

A worsening of symptoms for one to two years! Really? I feel like most people would have given up. I know I would have. I know there's a school of thought about healing reactions, Herxheimer, stuff like that. But not for years.

Bellabab profile image
Bellabab

I am 77 and I believe I have suffered B12 deficiency since I was 30, possibly earlier. It has had a devastating effect on my life by severely limiting my achievements with long periods of overwhelming fatigue and extreme apathy. These were diagnosed as depression and treated with many different antidepressants - none of which helped. Eventually this was diagnosed as bipolar affective disorder type 2 and treated with more antidepressants and mood stabilisers. With many changes in medication still nothing helped.

I was rushed into hospital near death four years ago and found to be extremely anaemic and had a positive PA test. Despite a diagnosis of central neuropathic pain I was treated with only 6 IM B12 injections over two weeks and put on a three monthly maintenance injection regime. Despite attempting to bring this inadequate treatment to the attention of my GPs I was ignored. In February this year I felt I was slowly dyeing and could hardly walk, stand up or remember anything. I decided to self inject every other day in line with the BNF guidelines and now I feel hugely improved. I told my GP and he attempted to persuade me to stop. I quoted the guideline and the lack of danger and I have continued and will do so until I observe no further improvements. The extent of my symptoms only became apparent when I began to recover and the insidious progression over the years has clearly been a major reason that the correct diagnosis was missed. The second reason is that GPs appear to have stopped listening to their patients. I have a background in human biology so am able to back up my opinion. Formerly I was reluctant to disagree with a qualified clinician - now I would encourage people to do so over this and similar issues.

I was angry at first as my life and health has been so damaged - now I realise that it is due to unfortunate and unpredictable events . I am very sad at the loss of my life and the even greater achievements I could have made - still I am now able to stop blaming myself.

rosegrower profile image
rosegrower in reply toBellabab

Many people, as well as yourself, have referred to the ignorance of many doctors in regard to diagnosing vitamin B12 deficiency. I have experienced this ignorance in relation to the long-term use of a proton pump inhibitor drug (PPI), in my case omeprazole. The doctors seemed unaware that blood tests are quite unreliable when used to check for B12 deficiency. Normal blood test results do not exclude the deficiency, All the blood tests are unreliable for this purpose.

There is legislation to require drug firms to alert patients to the side-effects of medication.. There seems to be variation in how this legislation is interpreted. The manufacturers seem reluctant to admit to side-effects of their products. It would be very helpful and prevent damage if their information sheet to the patient explained that a deficiency of vitamin b12 may occur with long-term use of PPI drugs because the drugs reduce stomach acid which is essential to absorbing B12 from food. Blood testing is not a reliable way of checking for deficiency of B12 in any situation.. The information leaflet should say that clinical judgement and and a trial of vitamin B12 supplements is required. The information leaflet also should give a better, fuller description of the range of symptoms of vitamin b12 deficiency.

In short, the drug manufacturers should give out much more information in order to inform and protect the public. They take a lot of trouble to inform doctors of the good points of their medication. They could take the same trouble to educate doctors about recognising and investigating the side-effects. This should go a long way to finding a solution to medical ignorance.

Bellabab profile image
Bellabab in reply torosegrower

I prefer to rely on the British National Formulary (BNF) on the NICE site. You can check out any drug there and its put very simply so we can all understand with the help of Google.

bnf.nice.org.uk/drug/hydrox...

I do believe that GPs and consultants need to up their game considerably. GPs are hampered by ludicrous underfunding that has reduced consultations to less than 10 minutes - it takes that to establish a working relationship - it should be more like 30 minutes or more. Consultants need to take a broader view at times and the B12 story is an excellent example because its process is so slow and not easily followed.

I do have faith that my former colleagues in biological research will continue to unveil the facts helped by the PAS. It looks as though B12 is central to a great healing, ageing and renewal processes in the body - a whole area of research including nasties like demential - for example:-

ox.ac.uk/news/science-blog/...

helvella profile image
helvella in reply toBellabab

What appears in the BNF is often a condensed, summarised, non-detailed version of the information available in the Product Assessment Reports, Summaries of Product Characteristics, Patient Information Leaflets which are available here:

products.mhra.gov.uk/

(Many of the SPCs and PILs are also available on the EMC site - which is much easier to use: medicines.org.uk/emc/ )

For Omeprazole, it appears that at least some SPCs contain B12 advice, but not PILs.

Omeprazole as with all acid blocking medicines, may reduce the absorption of vitamin B12 (cyanocobalamin) due to hypo or achlorhydria. This should be considered in patients with reduced body stores or risk factors for reduced vitamin B12 absorption on long-term therapy.

It is very often worth reading PAR, SPC and PIL for a product.

rosegrower profile image
rosegrower in reply tohelvella

I agree that the BNF is sometimes too condensed to give enough information. Combining the SPC, the PIL and the PAR can be useful but it would not tell you that blood tests for B12 deficiency can be totally misleading and should not be used.

Why should it not be required of drug firms to be completely transparent and helpful about side-effects? It would have been very helpful to me if the patient information leaflet had said that, " long term omeprazole can cause, through lack of stomach acid, vitamin B12 deficiency. This deficiency causes serious neurological damage, including neuropathy. Crucially it is diagnosed by weighing up the clinical picture and having a trial of vitamin B 12 treatment."

Had I known this at the time of presentation, I could've been diagnosed and treated with every prospect of a quick recovery.

I corresponded with a drug firm. They said, "it is not our job to educate doctors ". I say, "you go to great expense to educate doctors about the good points of your drugs, why should you not also educate them about the side-effects including their diagnosis".

We know that a drug which gets a reputation for side-effects becomes unpopular and sells less well. Could this have anything to do with the reluctance of the drug drug firms to be fully transparent about the extremely profitable PPI drugs.

CupCake5 profile image
CupCake5

I would like to say thank you to everybody who has replied & apologies for not managing to reply individually to you all... I am struggling with information overload & just don’t have the capacity atm to keep up but I do appreciate all the info 😊

expandingways profile image
expandingways

Hi again, I've just replied to your other post. How old are you, if you don't mind me asking? Have you been tested for sex hormones?

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B12 low end of normal range but symptoms. Dr says not deficient as no anaemia/macrocytosis

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Vit B12 deficient again after being taken off injections two years ago.

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Can't believe it!- new gastro finally ordered IF and parietal antibodies without me even mentioning B12 - after countless years of suffering

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Can Neurological symptoms develop years after being treated for B12 deficiency

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Newly diagnosed b12, are these symptoms all b12 deficiency symptoms?

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