Pernicious anaemia?: I am a 60 year old... - Pernicious Anaemi...

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Pernicious anaemia?

Bobmanner profile image
19 Replies

I am a 60 year old male leading a healthy, low stress lifestyle. I have never had any medical conditions (apart from a bout of pancreatitis a couple of years ago) and never been on any medications apart from the occasional pain killer or dose of antibiotics. I exercise and meditate daily. I don't drink alcohol or caffeine. I don't consume any sugar, gluten or animal products apart from the occasional serving of fish.

A couple of months ago I developed swollen ankles, sudden weight loss (3kg in a week) which has since rebounded, a dull and intermittent chest pain and irregular heart beat. All the blood tests and a check by the cardiologist showed everything was normal, except slightly lower than normal iron levels.

My ankles returned to normal quickly, but I still have occasional chest pains which stay as a dull ache throughout the day, and the palpitations are becoming more frequent. They feel like two quick beats and a pause before returning to normal. The overall rate never gets fast or slow. Often during the day they feel almost continuous. They are much better at night - they largely disappear when I lie down to sleep although I get a few if I get up in the night.

I also get one or two sore patches on my tongue which come and go (they generally last a few days).

My energy levels are good. I go for a run every morning and am never out of breath. However I do feel a somewhat foggy feeling in my head most of the time during the day; the mornings are the worst.

I have been taking iron and B12 supplements for the last couple of weeks.

This is all such a mystery to me. Could anyone give me some ideas on what could be going on?

Thank you so much for any help!

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19 Replies
Technoid profile image
Technoid

A diet with almost no animal products but without B12 supplementation (or insufficient/infrequent B12 supplementation) is not safe (or healthy in the long term) since it puts you at a high risk for B12 deficiency. Typical supplementation guidelines for those without deficiency are here : veganhealth.org/daily-needs... Was your B12 tested in the blood test you mention? Many of your symptoms sound like B12 deficiency but could be other conditions too, although what you mention of your diet means my first suspicion would be B12. It's good that your energy levels haven't dropped yet but that stage can arrive later and you dont want to get there...

You could also try to ask for tests for active B12, MMA and Homecysteine. I see that you have started on supplements though which you should be aware may affect the results of testing. Has the B12 supplementation affected symptoms?

Bobmanner profile image
Bobmanner in reply to Technoid

Thanks so much for your reply! My blood tests didn't include B12. I haven't noticed any difference with the supplementation but I'm wondering if I should up the dose. I've been taking 80mg of iron and 500ug of B12 drops but in the last couple of days have tripled each. No effect so far. Should I up the doses further or get a B12 'shot' (I'm not sure what that is however)? I see that the link you sent me says to take 2000ug daily for two weeks if you haven't been getting it regularly so I will definitely do that.

Thanks again - I really appreciate it.

Technoid profile image
Technoid in reply to Bobmanner

Careful with the iron - 80mg is already 10 times the RDA for men and men dont tend to lose a lot of iron unless very active. Unlike B12, iron can build up in the body and cause serious problems. If there wasnt an iron issue showing up in your bloodwork I would stick with multivitamin iron levels of 5-10mg a day at the most. If an iron deficiency was evident from bloodwork then the doc should have recommendations. In initial stages, Iron stores may be depleted in B12 treatment for first few months, in order to create new red blood cells so it does make sense to have some moderate iron supplementation. Its usually recommended to avoid B12 supplementation before testing B12 or MMA/Homocysteine, but since you already started I would stick to ~ 2000mcg a day for at least a couple of months and monitor symptom response. There is no toxicity or upper limit for B12 so no need to be concerned about that. I had a dramatic sub 24 hour response to increasing my B12 dosage (only 750mcg at first) but that was just the start of the journey as I was very deficient and ultimately required injections to bring my B12 up faster. If you have complicating factors such as PA or absorption issues, you may find the tablets do not have an effect so you might have to consider injections. Severe fatigue/exhaustion was the last B12 symptom to hit me after 2 years of neurological symptoms - I had a very high folate diet (vegan) so I believe that might have been linked. You can check your symptoms against : b12-institute.nl/en/symptom... . As recommended by Wedgewood a moderate dosage of folic acid , started some time after B12 supplementation is also important - it helps break the folates out of whats called "folate trap" to get that cycle running again. It might be surprising that its the artificial/synthetic folic acid thats recommended here instead of active methylfolate but there is sound logic behind this because folic acid is metabolized directly into a folate form the body needs independently of substances that may be low as a result of B12 deficiency. No need to go over 400mcg daily unless an absorption issue is found since I expect you already have a high folate diet.

FlipperTD profile image
FlipperTD in reply to Technoid

Just to support technoid: Iron is toxic in excess. Enough is enough, and too much is worse than too little. Once it's absorbed it's not easy to get rid of it.

Gambit62 profile image
Gambit62Administrator in reply to Technoid

Technoid whilst I agree that a diet with little or no fish/meat in it is not a health diet, the Iwo jima diet - which consists predominantly of vegetables with occasionally fish or some meat - is considered to be an extremely healthy and nutritionally balanced diet - so the key would be what is meant by 'occasional servings of fish'.

Fish is generally a very good source of B12 and daily dietary requirement is pretty low.

There are some mechanisms that stop overabsorption of B12 from dietary sources which mean that if you don't have an absorption problem, high dose oral is probably a waste of money.

Bobmanner, age may be a factor - as you get older levels of acidity tend to drop and that affects absorption of micronutrients. As Technoid says - the level of iron you are taking is very high and may not be the best thing to do.

Unfortunately the symptoms of B12 deficiency overlap with a number of other conditions so difficult to say if B12 is involved. If your symptoms only go back 3 months then that would suggest that B12 isn't involved - though it's possible to have symptoms start and not realise what is going on because B12 deficiency develops so slowly.

Diagnosing a B12 absorption problem from a single blood test is difficult because people vary so much in the level that is right for them and the normal range is big. Looking at levels and seeing significant (>20% over time) is a better way of using current tests.

Pickle500 profile image
Pickle500 in reply to Gambit62

Daily requirements for B12, within healthy and safe levels, have been confirmed as 4-7mcg per person. This is to avoid deficiency and keep normal plasma levels, following a review of the EAT lancet recommendations for meat-reduction.

Bearing in mind that minimum intake for B12 is 2.4mcg per day, and that one egg provides 0.6mcg of B12, it would be very difficult to maintain B12 from occasional fish.

Bear in mind the rigours of life, stress on the nervous system, lack of sleep and as you say some reduction into stomach acid.

EAT Lancet bases it's recommendations on 'the mediterranean diet' without factoring environmental factors that may affect lifestyles and health. Similarly, transferring to a Japanese fish-based diet may well work in Japan but not be sustainable in a Western country due to not having the same natural vegetation to harvest.

Plus, the gut microbiome thrives on diversity of nutrients. Over time, deficiencies will occur if the same foods are consumed without variety.

ncbi.nlm.nih.gov/pmc/articl...

Without supplementation, and occasional fish even once a week will lead to a deficiency over time, without question.

Gambit62 profile image
Gambit62Administrator in reply to Pickle500

The nutritional content of B12 in some fish is higher than that of eggs.

At no point does the article say that "without supplementation, and occasional fish even once a week will lead to deficiency over time."

The article is a literary review of other dietary studies.

The fact that B12 is stored in the liver in good quantities and is used to regulate serum B12 levels very efficiently means that a steady daily intake is not necessary and the article is talking about average daily levels. It doesn't provide much detail about the degree of dietary daily variation in the studies that were reviewed

The Iwo Jima (Okinawa) diet has long been identified by nutritionists as a diet associated with longevity and health.

Pickle500 profile image
Pickle500 in reply to Gambit62

"The fact that B12 is stored in the liver in good quantities and is used to regulate serum B12 levels very efficiently means that a steady daily intake is not necessary"

We will have to agree to disagree on this. My sense is it is very dangerous to suggest we do not need to meet a daily intake of--at the very least--2.4mcg. The paper recommends 4-7mcg daily to stay healthy.

Technoid profile image
Technoid in reply to Gambit62

Fair. I guess I'm now nervous about any kind of decrease in animal product consumption that is not matched by a compensatory increase in regular B12 supplementation. There are also other nutrients of concern but thats out of scope to discuss in this forum I guess but please pm me Bobmanner if you like more info on these.

helvella profile image
helvella in reply to Technoid

I note that you can go round numerous "ready meals" suitable for vegetarians and vegans and, save those which actually contain dairy, you'd be hard put to find any B12 at all.

Milk substitute products have, largely, now added B12. But not all.

Vegan cheese substitutes only sometimes have B12.

It would be all too easy to end up unwittingly getting far too little, if any, B12 if we rely on these products.

wedgewood profile image
wedgewood

I suppose you supplemented with B12 because you thought your symptoms could be caused by lack of it in your diet .( meat , fish , dairy products ) Those symptoms do suggest a possible B12 deficiency . The palpitations, foggy head and glossitis ( sore tongue) are B12 deficiency symptoms But I’m now puzzled that you still have so much energy, as exhaustion is the most common B12 deficiency .

. .Two weeks are really not very long to test the effectiveness of the B12 supplements . , so I think you should carry on supplementing for a bit longer . Did you see your blood test results ? Was your B12 tested ? Did you see if B12 was in range ? Mine was below range when I had blood tests, but the GP said everything was normal ! I hear on this forum that that has happened to many people , and they carry on deteriorating , without any treatment. You can ask for a copy of your blood test results . You are legally entitled to them .!

But you can have B12 deficiency / Pernicious Anaemia and have a normal B12 reading . This is unusual . It is called “functional deficiency “. But many doctors do no know this .

If , after supplementing with B12 tablets for a bit longer , you still have no improvement, it could mean that you have Pernicious Anaemia , which has to be treated with B12 injections .for life .

I would suggest that you take a modest folic acid tablet as well -400mcg is a good dose. It can be overdosed, but B12 cannot . Folic acid works together with B12 .

B12 deficiency is one of the “ Cinderella “ illnesses, which doctors know little about ,and also show little interest in . So we have to battle on alone .

But tell us how you get on . There is always help here .

This info below might be of interest .

How to diagnose Pernicious Anaemia 

by  elimination when you have B12 deficiency symptoms . 

if you are not vegan or strict vegetarian.

If you do not take Metformin or PPIs ( proton pump inhibitors e.g.Omeprazole ) any  acid-negating preparations and other pharmaceutical drugs ( look up on the internet ) 

If you do not abuse Nitrous Oxide ( laughing gas) 

If you do not have fish tapeworm 

If you have not had surgery to your digestive system, then you probably have P.A. Then , also if you can tick 4 of the following ———

Low serum B12 

Symptoms of  B12 deficiency (Google to find  out - and there are many symptoms.

Gastric atrophy restricted to the corpus and fundus  

Intestinal metaplasia in the stomach ( can be caused by Helicobacter Pylori.infection 

Macrocytic anaemia ( enlarged red blood cells) and not enough normal sized 

Hypergastrinaemia (various causes including Helicobacter Pylori infection .)  Of course a positive result for an Intrinsic Factor Antibody test(  IFAB) is conclusive proof of Pernicious Anaemia, but , in about 50% of P.A. patients , the test comes back as negative. 

High Homocysteine occurs in untreated or insufficiently treated Pernicious Anaemia patients , but there are also other causes for it . 

High levels of Methylmelonic acid can  also be indicative of Pernicious Anaemia.( In blood or urine ) 

Don’t forget that this information does not come from a medical source , but from someone who went undiagnosed with  pernicious anaemia for many years , and has an irreversible symptom for that reason . By trial and error ( and gross financial depletion ) I have arrived at the above .  I did get a conclusive diagnosis.I was  lucky to get a positive IFA test , obtained through a private doctor ,which was acknowledged by my GP , but I could not get sufficient injections ( only allowed 1 every 3 months ) So now I self inject weekly, and keep well, but  have to cope with the irreversible symptom . 

Reading posts on the forum has been very informative. Best wishes . 

You can have pernicious Anaemia even with a normal VitaminB12 reading . This is called functional deficiency , caused by Intrinsic Factor Antibody interference with the Assay .

PERNICIOUS ANAEMIA IS THE MOST COMMON CAUSE OF VITAMIN B12 DEFICIENCY. 

Sleepybunny profile image
Sleepybunny

Hi Bobmanner,

Do you mind me asking which country you are in?

Patterns of treatment for B12 deficiency vary between countries.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute Netherlands

(has useful lists of causes and symptoms)

b12-institute.nl/en/home-2/

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper founded PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

If you're in UK there's a lot more info I can pass on to you.

I'm not medically trained.

MorningMist profile image
MorningMist

About 10 years ago before B12 deficiency had even occurred to me I was referred for cardiac testing. At the time I was having palpitations for anything up to an hour, skipped beats - supra ventricular ectopics that came in thudding twos and threes. I thought I was heading for a heart attack, it was really frightening.

Tests - echocardiogram and stress test showed regular sinus rhythm with ‘intermittent’ ectopics. (Thousands in a 24 hour period) It was put down to stress, depression and I was prescribed beta blockers. ( which thankfully I never took)

It must have all been due to b12 deficiency because since having injections -SI- the problem has resolved and now I have single skipped beats occasionally which is entirely normal. I hope that helps put your mind at rest.

Cherylclaire profile image
CherylclaireForum Support in reply to MorningMist

Exactly the same thing happened to me and same treatment offered.

Around 4,000 additional beats recorded during 24 hour monitoring. Not considered dangerous or warranting further investigation - left to the GP to discuss. I also decided against treatment for it - as I had read that it was not of concern and could go as easily as it came for no known reasons. It did, a few months later.

I also related it to just another unacknowledged B12 deficiency symptom.

Strangely, I'd been told, two years previously, when having pre-op tests, that I had "sinus bradycardia" - a slow heartbeat. Seems my heart has a mind of it's own.

Bobmanner profile image
Bobmanner

Thank you for all the advice. I am in France on extended travel and, after reading the replies feel that I would like to get injections asap . Does anyone happen to know if/where these are available in France? I have seen that there is a liquid version solution of 1000 ug/1ml taken orally that seems widely available at pharmacies but would this be sufficient? Thanks again.

Pickle500 profile image
Pickle500 in reply to Bobmanner

Sublingual liquid is not the same as an injection. 1,000mcg in 1ml of injectable liquid will go straight into the bloodstream.

1,000mcg of oral liquid will go through passive absorption routes and far less is absorbed. Maybe only 20%.

I would recommend you find a high strength sublingual with no additives. You can get methylcobalamin with Adenosylcobalamin mix with 3,000 mcg. You can't overdose on B12 so you could take three to five drops under the tongue every day for 3 months

Expensive but could make a big difference. Then when you can find the injections they will boost your numbers further. You can't get loading doses like NHS but you could get one a week.

Nackapan profile image
Nackapan

I would geg further blood tests

Including b12 folate ,vit d ,iron ,ferritin,

thyroid .

ect.

It csn take years for different symptoms to appear from s b12

deficiency.

My daughter had irregular heart beats snd chest pains and joint pains earlier than any fatigue.

Get as many tests as you can.

It's often a case of elimination

obviously something is going on.

Absorbtion of nutrients does change eith age .

I was 57 when my deficiency was finally

revealed.

no other illness no other medications

Same diet

4 yrsrs on nothing else found.

I need b12injections as seemingly my body has stopped absorbing enough to ketp well .

Hope you get answers soon.

Gambit62 profile image
Gambit62Administrator

Bobmanner. The huge overlap in symptoms with other conditions is and there are some things about the situation you describe that are not entirely consistent with B12 deficiency.

Without knowing exactly what is meant by 'occasionally fish' and looking in detail at your diet it is impossible to diagnose a dietary deficiency.

I would also point out that this is a support group and is not a substitute for professional medical advice.

I would support those who have suggested further testing to ensure that you really do have the correct diagnosis, particularly as you haven't had a serum B12 test at all.

If you are in France then you can get B12 injections at a pharmacy without the need for a prescription but, again, I would emphasise the importance of professional medical advice

bookish profile image
bookish

Hi, no-one seems to have queried the pancreatitis and mentioned the need for pancreatic function/enzymes for B12 absorption. Is there a reason for you already being gluten free, as gluten intolerance and coeliac may have links to pancreatitis. Personally, my thought would be to come off the B12 as you haven't been supplementing for long and do the testing as thoroughly as you can afford to - serum B12, active B12, MMA, Homocysteine, Intrinsic Factor antibodies, Gastric Parietal cell antibodies, plus coeliac and thyroid (full) to be on the safe side. Not sure what they test for pancreatic insufficiency but I'm sure someone will. Best wishes

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