How right you are!

Just had my second loading dose of six, and starting to feel a little better, at last. Having been to see the new doctor, my fears, from people on here, were unfortunately right. I mentioned being under the cardiologist a couple of years ago because of palpitations, he looked at me blankly, the student in the room nudged him to show the fact sheet he had printed off for ME showing the symptoms of low B12! I also mention that I was sometimes struggling with my words "hmmmm.... maybe we should sort out the B12 first, then of course come back and discuss with me" The mind boggles! Today I saw a rather nice nurse who showed me my blood results for B12 from over the last few years, not sure of the range but not one was above 270, my latest being 152. This doesn't really mean a lot to me, folate low too and of course the dreaded iron (tablets prescribed again, heave ho!) Thankfully this kind nurse also took blood to test for celiac, hope I see her again, she was rather pushed for time, maybe next time I will quiz her further and ask for the range on my bloods. Just thought that I would share this with all of you as I enjoy reading the posts and the mindful of knowledge that you have. Thanks for opening my eyes! x

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  • Hi greenbexy welcome. Glad to read that you are at last getting treatment for what would seem to be a Vitamin B12 deficiency. Difficult to know without the lower and upper ranges but you are certainly in the "grey area" whatever.

    If you have not also been prescribed folic acid please consider some form of supplementation as Folate is essential to process the B12 you are having injected.

    Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following - can you "see yourself" among them?

    Vegetarians, vegans and people eating macrobiotic diets.

    People aged sixty and over

    People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

    People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption including certain contraceptive pills.

    People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

    People with a history of eating disorders (anorexia or bulimia).

    People with a history of alcoholism.

    People with a family history of pernicious anaemia.

    People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

    People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

    People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

    Women with a history of infertility or multiple miscarriages.

    What frequency of injections have been prescribed for you and what other symptoms do you have other than "struggling with my words"?

    I am not a medically qualified person but there are others on here who will be able to give you good advice and answer any further questions you might have.

  • Thanks for responding, I'm 42 and as my husband is vegetarian, for years I was following the same diet as him for ease mostly. Unfortunately I was experiencing heavy periods due to fibroids, so I was forever on iron tablets. About three years ago I began to eat red meat, and lots of it! I'd forgotten how much I enjoyed it, as I hated the iron tablets.

    I've also been on antacids for a few years after acid was damaging my throat (camera down). Although I'm sure I have some sort of bowel complaint as I'm always bloated and I can actually hear my stomach constantly growling (not good in the theatre or cinema!) and I'm either constipated or the 'other'.

    My mother has an under active Thyroid, so I ask every time I have bloods done for this to be checked but unfortunately for some reason it wasn't done this time! I initially had bloods done recently because of a sore tongue and ulcers in my mouth. The tiredness gets me down but not depressed.

    I'm getting loading doses of six over two weeks, just, Christmas would be around the corner when the surgery closes! I'm taking my own folic acid as I discovered on here that they go hand in hand. I will be joining the surgery's on line access soon, so I will be able to look at my blood results in more detail and look at the ranges instead of fleeting glances the doctors/nurses computer screen. Thanks again.

  • I'm a little concerned about you being given iron tablets? Do you have PA or B12 deficiency? If you have PA you might have a problem absorbing the iron in tablet form? I cannot absorb iron in this way and it gives me diahorrea and vomiting so if you do get those symptoms do back to your GP.

    B12 deficiency is when your levels are low and you have your loading dose but your levels are still low and you lack intrinsic factor in your stomach which allows you to absorb b12 from food.

    I know when your given all these figures it's like 'what the heck does that all mean?'

    One thing I've realised is that the longer the GP has been in practice the less they seem to know or care about PA. obviously there are exemptions to the rule.

  • Not sure if it is PA as my intrinsic factor was normal, even though I know this isn't an accurate blood test. I'm taking folic acid on my own accord as I know it will help. I suppose we will see what my bloods will be like in a few months for a diagnosis or not. The iron tablets play havoc with my digestive system, thankfully not sickness! I still hate taking them. I can't understand why my iron is so low as I have been eating quite a high iron diet, such black pudding, beef and lamb. Eggs or cheese for lunch, plenty of greens and yoghurt, so it must be an absorption problem. Thanks for responding, only time will tell where the problem lies.

  • You sound like you have the same problem with iron tablets as me. Except I can't eat black pudding (yuk) eggs, cheese and I struggle with red meat (get really bad stomach pains and take ages to digest it) so if you can get it out of food it's much better for you?

    Not sure what your asking of me administrator?

    I'm just say there are two types of condition, of course both cause deficiencies of B12 ! But one is due to not taking enough b12 or eating enough foods with b12 content and the other is due to a lack or absence of 'intrinsic factor' due to either autoimmune conditions or severe stomach conditions. If you cannot take up B12 it can prevent you taking or using folic acid from tablets. In my case and many others I have spoken to with PA folic acid tablets make them ill.

    My PA is inherited and my daughter has it too. There are many reasons people can get PA not just autoimmune disease.

    My PA was found after my daughter, who is a senior nurse, collapsed at work and the hospital ( where Mark Pritchard one of the researchers who does studies for the PA society and is my gastric consultant is a consultant) she had bloods took and was found to have PA. it was so bad that they said she must have inherited it. I was tested and my GP said he had never seen levels so low.

    I know that GPS will only look at blood levels and I was lucky really that mine were so bad they were found straight away but my health has really suffered due to late diagnosis.

  • Paulaw22, not entirely sure what you are trying to say.

    PA is an auto-immune condition in which the body attacks the main mechanism by which most of your B12 is absorbed from your food. As such, left untreated, it will result in a B12 deficiency. There are other things that can cause absorption problems and lead to a B12 deficiency. And, of course, if you don't have any B12 in your diet then you are also going to become B12 deficient.

    The symptoms people experience are the symptoms of B12 deficiency whatever the cause.

    The test which is normally done for B12 is the B12 serum test is known to be a very imprecise guide as to whether B12 is actually getting through to the cells where it is needed. It only looks at what is happening in one part of the process - using the blood to transport B12 to your cells and even then it doesn't give a full picture of what is happening in the blood. It is possible for things to go wrong with transport mechanisms and for people to be deficient at the cell level when their serum B12 levels are high - meaning above the normal range - and the way people metabolise B12 varies so much that people can be presenting with symptoms of B12 deficiency well into what are statistically averaged ranges.

    Many medics are a) not aware that serum B12 tests on their own do not tell the whole picture and that a full evaluation of symptoms is required, b) macrocytic anaemia is not a defining characteristic of a B12 deficiency and people can present with other symptoms long before any identifiable macrocytosis appears in blood work.

  • Greenbexy - good that you are having test for coeliacs though it does appear that this isn't a definitive test for ruling out the possibility of issues with gluten intolerance. Think you might find it useful to get hold of the full lists of blood results - including full blood counts and to have these available. Sounds as if you may have a more general absorption problems than just B12 - which isn't uncommon - because of the effect of stomach acidity.

    Sounds like you may have been taking PPIs - a medication that is known to lower stomach acidity and may have made absorption problems worse. The symptoms of low stomach acidity are very similar to high stomach acidity so you may have had low stomach acidity to start with - even with the burning in the throat.

    IFA is another test that isn't particularly good - it's prone to false negatives about 50% of the time, which means basically that a normal result doesn't actually rule out the possibility of PA as the cause of your deficiency.

  • Thanks for responding, as soon as I can I will post my blood results. Hopefully, if you have the time, could maybe explain them to me in layman's terms. Also had vitamin D deficiency last year, I walk my dogs at least twice daily, so couldn't understand it, that's the reason I believe it to be an absorption problem. Thanks again.

  • Also had vitamin D deficiency last year, I walk my dogs at least twice daily, so couldn't understand it, that's the reason I believe it to be an absorption problem.

    Vitamin B12 and vitamin D are two completely different chemicals, with completely different absorption mechanisms. So it's not likely that your deficiencies are caused by the same thing.

    In the UK most people have a seasonal deficiency in Vit D. The Sun just doesn't get intense enough during the winter to provide enough (unless you're walking the dogs in shorts and vest).

    If you do have PA then you almost certainly have gastric atrophy and low levels of stomach acid. That can cause iron deficiency - because the acid is needed to get the iron atoms into solution. The iron tablets your doc gave you are probably iron sulfate - and the iron from those will also have problems getting into solution.

    You can help by taking them with something like orange juice that contains citric acid and ascorbic acid (Vit C). Those two chemicals can bind to the iron atoms, helping them to dissolve.

    I prefer to take Solgar's Gentle Iron. It comes as the bisglycinate - which is much better at dissolving, so you don't need such a high dose and it doesn't have the rotten effects on the stomach.

    That low stomach acid might also be the cause of your gut problems. One of the things that the acid does is to kill any bacteria from the large intestine getting further up into the small intestine and stomach.

    Another job of the acid is to break proteins down into smaller chunks - so the digestive enzymes can work on them. Without the acid some of the protein gets through to the large intestine undigested. The bacteria that live there have a huge party on this unexpected feast - with the results you experience.

    I used to have those problems, but not any more. I now take about 30 ml of lime juice with each large meal - that seems to sort it all out.

  • Thanks fbirder, I should of realised really that vitamin D is different absorption than vitamin B12, think I'm probably clutching at straws. I'm finding it difficult to understand why I'm B12 deficient, really, and iron. I really overhauled my diet last year because of the iron and I feel like it's all been pointless. I know my appetite isn't always the best, but I'm far from skinny! What's really weird is that I've just found out a distant relative (so distant can't remember ever meeting her, my grandma's cousin, so not much shared DNA!) has had B12 deficiency for years, only recently been diagnosed and needs surgery on her spine in the New Year, due to lack of mobility. She has had it ages and never been diagnosed, scarey really, and has brought home how bad it could be if it hadn't been tested.

    I know I was on antacids twice daily a couple of years ago but I only really take them now and again, maybe when going out for a family meal. Could that have changed the ph in my stomach so much to cause such mayhem in my life?

  • Start a logbook and try the assess the severity of your symptoms each day. Record them in your logbook.

    This will help with short term memory loss and you can monitor your progress as repair of nerve damage is very slow.

    You should provide a list of all your symptoms and scores to your GP each visit because you may need to ask for more frequent injections once the maintenance regime starts.

    Also new symptoms may appear from the injection. The ones that alway follow the injection tell you that injection is working, even though the symptoms may be counterintuitive like pain or hunger. Repair of nerve damage is strange.

  • Thanks, the more I read about symptoms the more I seem to tick off! Only recently I realised that the dead leg that I need to thrash about in bed was actually pins and needles, half asleep doesn't help when I'm trying to log these symptoms! Hey, what do you mean new symptoms from the injections? I think I was expecting miracles not new symptoms!

    The hardest about this 'thing' is that I'm now reluctant to speak to strangers as the words totally escape me, I used to sometimes make conversation in a queue, at a bus stop, even sat in the doctors waiting room, but not recently. I will report any new changes, hopefully there will be only good news!

  • When nerves get repaired, the signal to the brain/within the brain is stronger and it takes about 3 days for the brain to recalibrate to the stronger levels.

    This recalibration seems to go better and faster if you have a positive attitude and feel good.

    However, the brain initially interprets the stronger signal as pain, or hunger, or headache The pain is worrisome which makes matters worse.

    I also get a bout of soft poo about 6 hours after the injection. This depends on how low m B12 got before the injection. I put in down to "detoxing" from toxins built up from a lack of B12.

    The logbook helps to identify which symptoms are due to the injection.

  • Hi greenbexy,

    "I also mention that I was sometimes struggling with my words"

    "I realised that the dead leg that I need to thrash about in bed was actually pins and needles"

    Word finding diffiulties and pins and needles would normally be considered to be neurological symptoms.

    Do you have other neuro symptoms? see lists below.

    pernicious-anaemia-society.... click on Symptoms Checklist

    b12deficiency.info/signs-an...

    "I'm getting loading doses of six over two weeks"

    You appear to be getting the standard UK B12 treatment for those who have B12 deficiency without neuro symptoms. This is 6 loading injections over 2 weeks followed by an injection every 3 months.

    In UK, people with b12 deficiency who have neurological symptoms are supposed to get a loading injection every 2 days for as long as their symptoms continue to improve then once symptoms stabilise, it's an injection every 2 months.

    BCSH Cobalamin and Folate Guidelines. Has your GP seen this document?

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" which I think is on third page of guidelines or put "cobalamin and folate guidelines" in search box.

    Info on UK treatment can be found about a quarter through above document.Useful flowchart on diagnosis/treatment of B12 deficiency about three quarters through document.

    Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage.

    Causes of b12 deficiency

    b12deficiency.info/what-are...

    Have you had an IFA (intrinsic Factor Antibody) test? This can help to diagnose PA (pernicious Anaemia). However the IFA test is not that reliable and it is still possible to have PA even if IFA test is negative. The BCSH Cobalamin and Folate Guidelines mention Antibody Negative PA.

    Other sources of b12 info

    1) pinned posts on this forum

    2) b12d.org

    b12d.org

    3) Book "Could it Be b12" by Sally Pacholok and JJ. Stuart. very comprehesive book about b12 deficiency with lots of case studies.

    4) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS (Pernicious Anaemia Society).

    5) BMJ b12 article

    bmj.com/content/349/bmj.g5226

    "found out a distant relative (so distant can't remember ever meeting her, my grandma's cousin, so not much shared DNA!) has had B12 deficiency for years, "

    family link in PA

    pernicious-anaemia-society....

    Do you have any other blood relatives with b12 deficiency or other auto-immune conditions?

    nitrous oxide

    Have you had any surgery involving nitrous oxide over past few years?

    gov.uk/drug-safety-update/n...

    I am not a medic just a person who has struggled to get a diagnosis.

  • I think that I will probably return to the doctors in the New Year, the tiredness seems to have slightly subsided, I'm still constantly yawning though, and I feel a little better in myself, if that makes sense. I suppose it could be psychological! Not really noticed any other changes yet, although I have a positive outlook on life which must help (I hope). Do you know if difficulty in swallowing could be related to B12 deficiency? Sometimes when I finish a drink off and tip the glass or cup up I can't seem to swallow properly and it ends up coming down my nose, very dignified, I know, but worrying all the same. Thanks.

  • Constant yawning was one of the symptoms I had before I was diagnosed. I used to tell the doctor about it but I think it got lost amongst the 'constantly tired' which they hear from so many patients. It was my 'crunchy' toes that finally resulted in the test for B12. For a few years I had felt that the soles of my feet had no padding, and it felt like I was walking on a pebble beach. I wear 'crocs' around the house as my feet don't feel so bad in them.

    The yawning is a lot better now although I do still get it, usually in the evening, and maybe when I am due another SI - (note to self - check how soon after SI yawning starts again)

  • I called it 'walking with frozen peas in my shoes'!

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