Pernicious Anaemia Society

Stomach and diaherra

Hi, I have a lot of trouble with my stomach with diaherra every other day. Also, light headed and dizzy some days. Have Pernicious Anemia and getting shots every month. Had to go down to half a shot because on full shots my numbers went sky high and made me feel worse. Any ways, with the half of shot I'm in the 500 range. This has been going on for two years now and starting to have panic attacks because I'm thinking the worse and that it is something more serious. I have quit work and thought that would help but it hasn't. Afraid to go anywhere because of the diaherra. Doctor said, to try Activia and fiber but stomach is still awful. Feel like I have the stomach flu all the time. Also, have a lot of hot flashers lately. Is it nerves or part of the PA? I also feel like if I have something scheduled to do the stomach gets worse. Making me a home body which I've never been before. Even with cutting back on my food intake can't seem to lose weight which I need to do. Keeps going higher and higher. Please help me get my life back. Doctor said, it takes a lot of time to feel better even if numbers are in a good range. Is this true? Open to any suggestions. Thank you.

18 Replies

I am no doctor, but after being a member of this forum for a while, I have picked up a few facts so I am going to make a couple of suggestions to you. On the one hand it sounds like you have a doc that understands enough to give you more than the standard 8 or 12 weekly shot, but is at least listening to you and what you are saying and this would suggest you don't live in the UK. Do you? On the other hand, if you have a UK doc who is willing to give you a shot every month, I would suggest you hang on to that, and dont have it reduced. The World Health Organisation has NEVER had a documented case of B12 'poisoning' and indeed a dose of some 5000 times stronger is given to someone suffering from cyanide poisoning. Sometimes, getting a shot can have side effects due to buffering solutions or it may be you are sensitive to the cobalt that is also in the injections but the vitamin itself is water soluble and your body will 'pee' out every last bit it doesn't need. So, your symptoms are unlikely to be caused by your shots. However, it does sound like you have crossover symptoms with hypo or even hyper thyroidism, not sure which, someone else here will know. There is also another condition, called hyperkylaemia that can occur when the body is scrambling to make new badly needed red blood cells but suddenly finds itself short of potassium, a tiny squirt of which is needed for each new cell. Some of your symptoms match that, too. The following is an extract from a BMJ article that gives you chapter and verse about PA. I only have the pdf version but if you put in a posting asking for the link to the 'BMJ article about B12 deficiency' some lovely person will give it to you.

'Treatment with vitamin B12 leads to the production of new

erythrocytes, which results in an intracellular influx of

potassium. This may produce severe hypokalemia, which

requires monitoring and appropriate treatment.'

I wish you well and do hope you get resolution to your health issues very soon


Hi, thank you for your input. Yes, I do live in the United States. I have had a thyroid problem for years but it is being taken care of with a high dose (1.50) of Levothyroxine. Blood test numbers seem to be in range. Potassium numbers are good also. Doctor said, it takes time to start feeling better but after 7 shots I feel like I should be having more good days than bad and I'm not. Lots of gas. When I get up from a sitting position I burb or first thing in the morning. Stomach is just way off like I said. Feel like a hypochondriac! Just found out my mother had this and back than they didn't treat it and she died at 68. So at least there is some hope now.


Hi again, glad to see potassium looks ok. And your thyroid problem seems to be being treated well as well, although i would expect your weight to be under better control with the right drugs, although i know next to nothing about that! I still say it would be wrong to stop the normal doses of b12. I have read others suggesting that as your body repairs the damage done by low levels of B12, it can make you feel worse for a while. Like a broken bone can feel numb when broken, but once it starts to heal it feels like the very devil! My stomach feels off as well, and it has done for years. I suspect that damage may have occurred, some kind of catastrophic gastric event, and that has resulted in PA. Are you taking ant acids like omeprazole? They can reduce the efficacy of B12 shots. so can many other drugs, but i need others to tell you of this because i don't really know enough about that. Keep at it, ask your questions, read anything and everything you can and make a nuisance of yourself at your doctor's surgery. Get to know about PA, thyroid problems and vitamins until you are BETTER informed than your doctor, trust me, it won't take much! Only then can you sound knowledgeable enough for them to realise they can't really fob you off. Good luck


Thank you again. You have helped so much. Glad to know others are like me and I'm not alone. Was thinking it was all in my head. Yes, taking Gaviscon for gas, probiotics, diaherra pills when I can't get it to stop. Had to cancel so many fun things because of this stupid stomach. Have a complete physical on the 10th of June so will do some more talking with the doctor. Will continue B12 shots first of each month. I do read everything I can get my hand on about PA. Thanks again you made my day.


If you can cut out the gaviscon that may help as you need good levels of acid ... and low levels of acid are one possible reason for the development of a B12 deficiency.

The format of B12 you are receiving is cyanocobalamin - there are other forms of B12 and different people do seem to respond differently to different formats. I'm in the UK where the form of choice is hydroxo but find that although hydroxo (in high enough doses) works well for me with the neuro-psychiatric symptoms, methyl works best for me with some of the nuerological - eg feeling in my left foot, aches pains etc, so it may be that you would find another form of B12 suited you better.

There is a condition called functional B12 deficiency - where you body develops antibodies to the mechanism that transports B12 to the cellular level. If you feel worse when levels get high then it sounds like your doctor is trying to avoid this ... however, the strategy may actually be wrong as the serum test is measuring total B12 in your body and not the form that your body actually uses. The body has to do a lot of work to convert cyano-cobalamin to the active form, so you may still have very little of the B12 you need in your blood so healing is going to be very very slow.

There is also a genetic defect called MTHFR which means that carriers have problems converting B12 and folate to the methyl formats that the body uses and carriers will need methyl cobalamin. I don't know much about the condition but there is obviously a test that can be done to identify if you have this gene.

I really felt as if I was totally going backwards on normal regime of B12 treatment in the UK and it was only when I took measures myself to keep my levels astronomically high that I actually started to feel any better .... and boy do I feel better now.

I suspect that I probably have the autoimmune response that leads to functional B12 deficiency but the only way of really overcoming that is to flood the body with so much B12 that it can't create enough antibodies to stop it all going through.

This article may be of interest in relation to functional B12 deficiency, more because of the studies it references - the thrust of the article isn't about keeping B12 levels low but about the importance of investigating the cause of high levels as it can be an early indicator of some liver problems etc.

I did come across an article - don't know if it was one of the studies referenced or was related to something else - that talked about a patient with B12 deficiency who only got better if levels were kept really really high.

I still get some problems with diarrhoea - have to time jogging right or I get caught short big time, so it could be the B12, but could also be a lot of other things. Really hope you find a solution soon.

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Hi I have PA and hypothyroidism too but it could be your suffering from Irritable bowel Syndrome as I suffer with that too I suggest peppermint oil capsules something like colpermin you can get it over the counter but I get mine prescribed by the doctor also try to stop worrying so much as that make it worse I know sounds easier said than done as I know you will worry every time you step foot out of the house and if like me plan your journey around toilets but also certain foods trigger it I've found it is a bit trial and error learning to find which foods also ask doctor to check if your coeliac which could explain the attacks too


I will the try peppermint oil. Thank you. Yes, I know the worrying doesn't help it at all. Have to force myself to keep going or I'll end up giving up my life outside of the home. Have been taking anxiety medication and that helps a little. Went through this in my younger days and it went away for a long time but now is back. I heard it can come with PA. I have also cut out a lot of food right now that I know they upset my stomach. Is this fun or what?


Ask if you can be tested for SIBO (small intestinal bacterial overgrowth). This is likely with PA because of the low stomach acid.


Thank you have already been tested.n all tests are normal.


just to throw something else in I had a virus and after non stop diarrhea after 12 months of testing including hydrogen breath test for bacterial overgrowth and nothing being found. I was asked by a dr doing the tests to stop all dairy products for 2 weeks and see if it helped. It did and she went on to do another hydrogen breath test with a chalky liquid and sorry I can't remember what it was called but it was mik related and I was found to be severe lactose intolerant.


yes, had all those tests and they said i wasn't lactose intolerant. Did go off dairy for two weeks and didn't feel any difference.


worth a try, hope they get you sorted


Hi Weinke, I assume you've had a recent test for coeliac disease?


Yes, had all the test!


Ah, sorry to say I've nothing else to offer, other than perhaps a parasitic infection. These are surprisingly common in some parts of USA.


I used to have constant diarrhoea and constipation.

my folate levels were borderline low (doc kept saying they were ok, because they were still in range), so I started taking supplement to get my levels up, because I read that b12 works better if folate is higher.

after stating the supplement my stomach settled down (and so did my acne). Then I recently stopped taking them as blood test showed my levels are now high, and I started getting diarrhoea again, so I'm back on them again.

It turns out that there are 'brain cells' in the in the gut and folate is needed for it to work right (sorry I cant remember the details it was a while ago and my brains a bit slow and foggy this week)

I take folinc acid or methlefolate not folic acid as it upsets my stomach even more.


Thanks for the information. I'll ask the on the 10th of June when I go in for my 6 month check up.


For those who also suffer from debilitating stomach cramps, this might help: I recently had immediate onset of severe pain after drinking a cup of tea using powdered sweetener, when I'd run out of sweetening pills. The powder's main constituent was maltodextrose, which can produce gastric pain and bloating even in healthy people. I often used the powder as a sugar substitute to sweeten plain yoghurt or unsweetened cereal, which I ate regularly to keep up my fibre intake, but now I've stopped adding powdered sweetener to my food, the cramps have become rare.

Now I check any 'low cal' foods to make sure I don't inadvertently ingest maltodextrose. I've also found that a high fibre diet makes my symptoms worse, for some reason. I've been living with Pernicious Anaemia/Autoimmune Gastritis for about 10 years now, and although it's a daily struggle to keep all my blood levels on an even keel, and avoid certain foods like broccolli that can make me sick for a week, I'm finally beginning to feel well more often than not. But I wish I knew how to increase my energy. Any suggestions gratefully accepted.


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