Advice re my 22 year old daughter's response to treatment

Hello, we live in the Caribbean. Our GP is wonderful, but at her own admission knows "nothing much about Pernicious Anaemia " other than a vague recollection of a medical school lecture. After a long struggle and being shunted from specialist to specialist, my twenty-two year old daughter was diagnosed with PA and positive IF antibodies a month ago, when her anaemia raised a red flag. Her serum B12 at diagnosis was 110, I don't know her other results, but was told her anaemia was not at a serious level and would not need treatment other than correcting the B12. Her primary symptoms were gastric reflux, diarrhoea and abdominal pain and bloating, extreme fatigue, diifculty in concentrating and processing information to the point she almost resigned from her job, and an inability to exercise due to feeling weak and dizzy. She had 7 loading doses of 1000mcg B12 IM over 7 days, and is now having weekly shots for a month, now due her 4th weekly shot. So altogether she has had 10 injections over the space of a month. Initially after the first 7 shots she felt wonderful, all of her Gastro-intestinal symptoms disappeared, she had energy, she felt well, on top form with her work again. She started to slowly exercise again, building up activity in increments, and was doing well. The past week has seen a steady decline. Two days ago she had to stop her exercise session as she became extremely breathless, which she had never had before - and now she is horribly tired, the abdominal pain in back, and she feels rotten - even though it is only 6 days since her last and 10th shot. I know a lot of people post that they don't feel well due to too infrequent injections, but our Gp has been generous in the treatment protocol. What I would like advice on is whether this is usual to feel unwell at this stage, after so many injections, or is it possible that something else is going on. I was told that once the B12 was on board, the anaemia would right itself in about a month, so I am concerned that she is still getting tired and breathless, rather than improving.

18 Replies

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  • Hi LovesLuna it's getting very late at night here in the UK.

    I'm not medically trained but I've had P.A. for 45 years and can say that it is not uncommon for some symptoms to appear to get worse before they get better as the B12 gets to work repairing the damage done to the nervous system.

    Over here injections of B12 continue every other day until the is no further improvement in neurological symptoms according to our B.N.F. Guidelines as below:

    Treatment of cobalamin deficiency

    Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

    Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

    The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

    However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment .

    I wish you and your daughter well and bid you goodnight hopeful that someone more qualified will respond in the morning

  • Hi Clivealive. Thanks so much for responding. I didn't think my daughter's symptoms qualified as "neurological", so in that respect she should have had sufficient loading doses, no ? Should she be having more frequent injections still ?

  • Just one point - do you know what your daughter's Folate level is as this works together with iron and B12 to make red blood cells.

    You mentioned "her anaemia raised a red flag"- did she get any treatment for that?. It could be that she needs to supplement with some folic acid so best check with her doctor.

    "Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health. It helps in the production of DNA and RNA, the body's genetic material, especially when cells and tissues are growing rapidly, such as during infancy, adolescence, and pregnancy. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine."

    Vitamin B9 (Folic acid) University of Maryland Medical Centre

  • Clive alive, she didn't have folate checked as far as I know. She certainly wasn't advised to take any additional supplements, just the B12 injections. She is going back to the Gp today and I have printed off the BMJ clinical paper on B12 which states about folate and ferretin levels, and also potassium. I actually think she has low potassium. having now looked up the symptoms - she has abdominal cramps, aching leg muscles, and she was complaining of feelings thirsty despite drinking lots.

  • Hi LovesLuna - It is late here as clivealive said and I am not one of the 'experts'. But gastric reflux and bloating were two of my many synptoms.

    With advice, from this site, as well as my B12 injections, I take a good probiotic, eat raw organic sauerkraut, and drink a lemon juice drink every day and have not had either since.

  • Hi LovesLuna - re the reflux and tummy problems - I pinched the following from a Wedgewood reply.

    “I have also had tummy problems, and was told by my gastroenterologist that PA patients have either no or low stomach acid. . . . .You need stomach acid to kill off bad bacteria, and also help absorb the nutrients in your food. Without acid, you are going to miss out on lots of nutrients. . . . . I do take a water-based probiotic and try to eat some organic raw sauerkraut every day.”

    Having followed her advice I can now eat hot curries again.

  • She needs to take it easy while things begin to repair.

    Once the B12 levels are up it takes at least 120 days for the body to replace all the oversized red blood cells with ones the right size that can carry oxygen etc properly.

    She'll most likely need extra potassium too as making all that new blood gobbles up a lot of potassium. That's maybe why she's not feeling too good. Adding a banana or two helps and if you can get coconut water it's great stuff for adding potassium and keeping hydrated.

    Until that's done the rest of the body can't begin to heal properly.

    It's a slow process and pushing yourself just lengthens it.

    Some say it takes twice as long to heal as it took to get ill to put it into perspective.

  • A cautionary note - please don't be tempted to take potassium supplements without medical advice - too little or too much potassium can affect the way the heart works.

  • Yes, I know that, but thanks for the warning. I know too little or too much potassium is equally dangerous !

  • I have just said the same thing to her Steap, to leave the exercise and just give herself time to recover. I think B12 injections were painted as a magic bullet, once she got the shots, everything would be normal, life would be normal. She has struggled with ill health since she was 19, so I think feeling initially so well after the loading doses made her feel that she was indeed "fixed". I had read about the potassium thing, and she has been drinking coconut water ( no shortage of coconuts here !) and juicing with beets and spinach and oranges. She is feeling pretty rubbish this evening. Wasn't able to eat at all with her stomach ache, bad pains in her legs, and she has now gone to sleep at 7.30. It is a struggle getting her to be proactive with her doctors, for so many years she has been made to feel like a complete hypochondriac and it isn't easy for her to now seek help, never mind demand help - but I have just managed to pursuade her to go back to her Gp to request folate levels, maybe potassium as well. Is there anything else that could be making her still feel ill, that she should have checked ?

    Beginner 1. It is interesting to find someone else who has gastric and bowel symptoms. This has primarily been my daughter's most debilitating symptom. Constant nausea, severe stomach and abdominal pain, gas and bloating, reflux all day every day. She tested negative for coeliac, inflammatory bowel disease, and H pylori . A barium swallow showed gastric erosion and peptic ulcers. Her gastro-enterologist said he is probably going to do an endoscopy now that the IF antibodies are positive. I myself am at a loss as to why an endoscopy wasn't done when this all started, but that's an entirely different rant ! It was amazing that after eight months of suffering, it all went away by the 3rd loading dose, and now it is so upsetting for her that the pain and nausea is back.

  • I too have stomach and bowel problems. I had treatment for hpylori back in 2012.

    I've had probs with constipation in the last year or so and get aches after anything too rich or containing bread or dairy.

    I believe the hpylori alters the stomach DNA so it produces much less acid and that continues even after it's eradicated.

    That means we can't digest food properly, especially proteins and fats etc. Breaking down the protein in meats etc is essential to releasing the b12 so it can bind to intrinsic factor. On a positive though if hypylori was the cause it seems we are more able to get benefit from oral meds containing b12 as the digestion has been taken care of in its manufacturing.

    I'm guessing you get quite a bit of sunlight over there but keep an eye on vitamin d levels as they do seem to get effected when we have malabsorption issues.

    Plenty of sun without burning is the key and not showering after hitting the sun is important too as you can literally wash it away before the skin has time to make it.

    Many people report feeling worse before they feel better. It's suggested that this is the body repairing things. Nerves become more sensitive so you feel more.

    For me light got brighter and sounds louder among other things. The brain takes time to readjust to the extra signals and it can at times be very overwhelming.

  • Sorry I misread the bit about negative for hypylori.

    It is however very common and one of the main causes of peptic ulcers so I wouldn't totally rule it out.

    It may of been an issue historically or been treat by antibiotics taken for something else historically.

  • Don't be sorry, I agree, and I was asking about H Pylori since July of last year when her stomach issues started. She was diagnosed with IBS in 2012 and so "it's just IBS related " was an automated response. Eventually after I nagged the doctor enough, she had the H Pylori blood test, which was negative - but there is a stubborn part of me that still wonders if H Pylori is to blame for the gastritis and destruction of her stomach. My sister in Australia had gastric issues and tested negative on both the blood test and the carbon breath test, but subsequent endoscopy and tissue biopsy confirmed H Pylori. My daughters gastro-enterologist wouldn't even entertain that such a thing was possible.

  • Does your daughter take painkillers regularly?

    Doctors may not see this as a cause. I used to take aspirin for migraine every week. I had stomach problems, nosebleeds, weakness and faintness/dizziness. After a really bad reaction to Ibuprofen a pharmacist told me I should not take either of them and I then began to get some relief from my "IBS" (further improvement after giving up gluten). The doctor had just wanted to give me anti nausea medication and had ignored me when I said I had vomited blood.

  • Frodo, it is so frustrating when our doctors don't truly listen . She only took ocassional paracetamol, never aspirin or brufen. She has been gluten free since 2012 and kept a food dairy for months, but there didn't seem any pattern between food and her symptoms, or indeed if she ate or didn't eat.

  • Hi LovesLuna. I'm so,sorry that your daughter is having so many problems and feeling so ill.

    Thought it might help if I try and summarise some of the reasons why symptoms may still be a problem when treatment with injections has started.

    The first thing to say is that some of your daughter's symptoms are neurological (the problems concentrating and processing information that you mention) and I suspect that she may have more - and that you may not realise that these are symtpoms - or that they are neurological in nature. (There's a symptom checklist in the links below and also a ore extensive on at B12deficiency.info - worth checking out - you may find that your daughter has symptoms that she doesn't even realise are symtpoms - many do).

    It's significant that she felt better on the alternate day loading doses - then suffered a re-emergence of symptoms when the injection frequency was reduced to weekly.

    As clivealive says, the treatment for neurological symptoms here in the UK (after the loading doses) is every other day until no further improvement - and for some people this regime of injections has to continue for many months before they are able to reduce the frequency of injections. The return of symptoms when the injection frequency is reduced is usually a sign that more injections are needed - and this is confirmed if the symptoms disappear when the injection frequency is increased again.

    I suspect that your daughter would improve again if she had more frequent injections.

    Having said that, PA and the B12 deficiency can be very complicated and there are a number of other things that have to be right as well.

    People with PA almost always have absorption problems (and lots of gastric symptoms, like your daughter) - and these absorption problems can cause other deficiencies that impact of health.

    The main one to look out for is folate. Folate and B12 work together so if folate levels are deficienct or low in the reference range, then the body cannot utilise B12 properly (as a rough guide, folate needs to be about the middle,of the reference range). Your doctor might like to check and keep an eye on folate levels - all the B12 in the world will not,work if there's not enough folate for it to be processed properly.

    Ferritin - low levels of ferritin can be indicative of iron deficiency aneamia. Again, as with the folate, if levels are too low in the reference range, then this can make you feel ill indeed (the symptoms of iron deficiency are very similar to the symptoms of B12 deficiency). I begin to feel very ill (and breathless too) if my ferritin level drops below 100ug/L (reference range 10 - 420ug/L. It would be a good idea to ask your doctor to keep an eye on ferritin levels. If these do prove to be a problem your doctor should prescribe iron supplements - and re-check after 3 - 4 months to assess if any deficiency has been corrected - then keep an ongoing watch to ensure levels do not drop again (they often do). If there is an ongoing issue, the best to do a full iron panel (serum iron, transferrin, saturation etc.) since ferritin levels alone will not give a true iron status - and there are other types of anaemia that would not be picked up by looking at ferritin levels alone.

    Vitamin D - many people with PA seem to have problems with vitamin D levels - again, low vitamin D can make you feel very ill indeed. Worth checking. Will all that sun in the Carribean make a difference - no idea - but I'd love to try it 😄.

    Some words about potassium - when of frequent B12 injections, potassium can get used up very quickly and here in the UK, doctors are advised to check blood potassium levels, especially when on every other day injections. As Steap has said, eating a potassium rich diet helps - but don't take supplements unless under direct medical supervision (potentially dangerous for the heart).

    Deficencies (such as those listed above) can produce symptoms that are very similar to those produced by B12 deficency so sometimes it's really difficult to tell what symptoms are caused by - and by keeping an eye on other potential deficencies - and dealing with these too - its easier to understand if B12 is the issue (not getting enough) - or another deficency that needs addressing - or,perhaps all at the same time 😖

    Some people find that taking a daily multi-vitamin helps, many take 400mcg of folate a day (but not everybody needs this - best to look at folate levels first and supplement if these remain too low. But note - if a deficiency exists, doctors here prescribe 5mg daily until the deficiency is corrected).

    Something else to consider - doctors often say that blood tests are 'normal' when they're not. Bumping along the bottom of a reference range (or nearing the top) is not good enough for people with B12 deficiency - it's where the results are in the reference range that counts. If you want to get copies of your daughter's blood results and post them here, together with the reference ranges, we can help with interpretation.

    So...just a few ideas that may (or may not) help. Sometimes it's a bit of a juggling act trying to get everything right...but I think that the fact that your daughter did fell well and was able to resume more of her usual life-style is good news - it means that it's more likely that she should be able to achieve that again.

    I'm going to post some links below that will give you some very useful information about PA and the B12 deficency it causes - in particular, there's some B12 'myth busting' information that may help you to deal with your doctors. Unfortunately, GP's here are as ill-informed about PA as your doctor seems to be - and having information to show them can be very useful - it means that you'll be better able to fight your corner (if necessary) and make sure that your daughter gets the best treatment to make and keep her well.

    A good website for more information - B12deficency.info

    Two good books:

    Martyn Hooper 'What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency'

    Sally M Pacholok & Jeffrey J Stuart 'Could It Be B12 An Epidemic of Misdiagnoses'

    Finally, good luck with it all, let us know how your daughter gets on, and post again if you need any more advice or support - lots of lovely people here who will pop in to help 😄.

    And here's some links:

    LINKS TO INFORMATION AND GUIDELINES

    b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

    evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

    pernicious-anaemia-society.... (PAS Symptom Checklist)

    stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

    onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

    stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

    stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

    stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

    stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

    👍

  • Foggyme, I read this post earlier, but I was at work and couldn't take time to reply. I just wanted to thank you for such a wonderful, reassuring, and above all, informative reply. I am so grateful for the time and thought you obviously put into your reply. It was so helpful. My daughter had blood tests today to check folate and ferretin and her potassium level. She asked about having more frequent injections, but was told that as she doesn't have neurological symptoms there would not be any point ( and it is true that once she had the loading doses the mental challenges did disappear and haven't returned ). I think for now we will wait to see if there are any co-deficiencies, and if she continues to feel poorly, then the obvious conclusion will be that she does need to up the B12 frequency and I shall then advocate for that, armed with all the information offered in your post and by others. Thank you !

  • Your GP may find it useful to take a look at this micro-site and sign up for updates

    pernicious-anaemia-society....

    Anaemia isn't one of the first symptoms to develop so the fact that it wasn't severe isn't any guarantee that she hasn't been deficient for quite some time.

    Anaemia takes a few months to repair... B12 is also used by a number of processes in the body and the symptoms can be the result of more than one system being deprived of B12.

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