Can't figure it out?

Been going around with this for a couple of years now. Maybe someone has an answer to my problem. Have a lot of stomach problems. Had all the tests. Been told I have Pernicious Anemia? Started monthly shots and count went up over 800. Doctor put me down to half of shots every month and still feeling awful. Now, have been told I am in A-fib. Lots of pills! My stomach feels like I have stomach flu most of the time with diaherra. Is there a certain doctor I should be seeing for this? Can't eat most anything now and you would think between not eating much and all the diaherra I'd be losing weight but I'm not. It's like my stomach can't absord the food or the shots? I love my MD but he thinks most of my problem is anxiety? Has me on pills for that now! Please help me if you can?

17 Replies

  • Hi, dont want to freak you, but i have digestion problems too and my gp has ordered colonoscopy, have you been given one?

  • Yes, nothing showed up. Also, scope down the throat showed nothing. Doctor thinks it's IBS. I'm not sure it is?

  • Do you know what your folate levels. Some medications for anxiety can affect folate levels and that has a knock on effect on B12. Its quite common for doctors not to realise that anxiety may well be a sign that the B12 isn't being treated properly as a lot think that all that is needed is shots and a vitamin wouldn't affect your mental state anyway because it is all focused on anaemia - frequently not present.

    Have you had any investigations in relation to the stomach problems - although it is quite common for stomach to be an issue (and that isn't unexpected when you think that B12 D is an absorption problem so something isn't working right - and the cause of the malabsorption can often affect other vitamins etc so would be really good to have that thoroughly investigated and a full look at the bloods again.

    High levels of B12 from shots aren't really a problem - so it may be that reducing the B12 in response to the levels having gone up was the wrong thing. the tests don't actually tell you what is happening at the cell level where B12 is being used so going on those isn't really the best thing to do - blood results after supplementation don't really mean an awful lot unless they continue to be low.

    See you mention IBS - which can be a symptom of B12 so think you probably haven't got enough B12 at the cell level ... but trying to get that through to your doctor is likely to be a real battle.

  • Doctor has been great about all of it. Was my idea to go to half shots because I was getting dizzy when on full shot. Count last time was 800 so in a couple months he'll test again to see where half shot count is. On Friday on my half shot it seem to give me light flashes in my one eye. I am blind in the other eye for over 30 years due to a stroke behind the eye. So it was very scary. Do not fell good at all the days after shot.

  • Sorry to hear that the shots are causing you issues - and you aren't feeling good after them. It may be that you are suffering from an autoimmune response to high levels of B12 in your bloodstream - some people produce antibodies to the mechanism that transports B12 to the cell level (TCII) which means that they may have lots in their blood but none of it is actually getting through to the cells where you need it.

    The only things that I have really managed to find in the literature about treating B12D in people with this problem implies that the way to beat it is actually to flood the system with very high doses of B12 ... though some people do find that half doses help them ... but I think it depends on at what point the anti-bodies start to win against the additional B12 in your system.

  • Yes, and my B12 wasn't as low as some I have read about. My came in at 237 and one shot sent to 600 and second shot sent me over 800. so that's when we decided to do half shots.

  • "Has me on pills for that now!"

    Some types of medication can interfere with the uptake of b12 in the body. Have a look at the list on this site.

    Sally Pacholok's book "Could it Be B12" also has a list.

  • I believe that Lupus and Coeliac diseases are frequently linked to B12 deficiency, thyroid and diabetes problems. Your GP should realise that he is dealing with a complex problem that probably requires specialist management.

  • What kind of specialist should manage Pericious Anemia?

  • My partner's endocrinologist seems the only one to have a handle on the complex syndrome, but he still has poor understanding of the B12 part of it. Others have said that a gastroenterologist has helped them. I would be interested in what other specialites others might consider. Obviously neurology could be helpful if the neurologist is cognizant of B12 (which two I have met missed in serious cases involving my mother and my partner).

  • Went to a Gastroenterologist and she the one after many tests said I had PA. Than she said go back to MD and he can help you. Wasn't to pleased with her. And MD was surprised she sent me to him? Like no one wanted to help me.

  • I agree. This kind of attitude can be a real problem where specialists fail to treat complex cases. Fortunately my partner's endocrinologist acknowledges that we cannot rely on the GPs we have tried. He keeps talking about sending my partner back to the GP when he has gone for 6 months without complication, but that just does not happen. And he referred us to a diabetes educator today, who we saw, and who gave my partner a blood testing kit and advised him to report back to his GP in a week with the results. As if. The GP, if the results were bad, would probably put him on metformin or some such without considering the impact on B12. Not that I would be against metformin, but just leaving him in the hands of a GP. Also, yesterday, when he went to his usual GP practice for a referral to the diabetes educator, the GP said that he only had pre-diabetes. Even the educator said, "Oh, he would need further testing before I could say he has diabetes." However, she spoke with his endocrinologist, who said he would stand by the diagnosis of diabetes in the context of my partner's P.A. and Hashimotos disease. And when I said to the Endo: "How can my partner have a normal blood average glucose but be diagnosed as diabetic on the basis of a couple of glucose tolerance tests over 7?" He basically conveyed that we are looking as some kind of process associated with diabetes, Hashimotos, B12 and other autoimmune diseases, that is obviously happening, whether or not it is actually causing typical rises in average glucose levels. One needs to keep looking until one finds a good doctor, unfortunately.

  • I believe the root of the problem is still B12 def. and researchers believe leaky gut or intestinal permeability is the ground zero for autoimmune disease. I had stomach problems - gastritis, heartburn, h/pylori, gall bladder pain, IBS, etc. for years with Hashimotos autoimmune thyroid disease. PPIs, acid suppressors, heart medication and antibiotics depleted my B12. I eventually found huge relief with Swedish Bitters for IBS, Cider Vinegar for gall bladder, reflux, heartburn, as well as sauerkraut for gastritis & H/pylori (more good bacteria than any probiotic). Hopefully, all of this is healing the villi in my stomach wall and helping absorption of B12.

    Re arterial fibrillation, this could also be caused or aggravated by low B12 causing high homocysteine putting you at risk of heart problems - BMJ research document:


    "If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    "Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy."

    "It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

    The above UK research document is supported by many research papers. It also tells your GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters.....

    I hope this helps you try for more B12 Wienke

  • Thanks for all the good information. Doctor tried full shots and it made me dizzy so went to half shots. Still on the day of shot I fell worse so half shot is it for now. Last Friday when I got my half shot I had blurry vision twice. Scary since years ago I lost front vision in my other eye. We are a mess, aren't we? You have been a big help!

  • Oh, yes - that does sound scary! It must be difficult to know how to proceed. Sometimes symptoms get worse for a short time before they improve but I understand this would frightening,

    Re. tummy problems - having also avoided gluten, all I take now is a spoonful of sauerkraut three times a day before a meal and nothing else - has worked wonders.

    I really hope things get better for you.

  • Thank you, same to you! Hate sauerkraut! Lol See there is a new pill on the market called IBguard for IBS. It has peppermint in it for the gut. May try that.

  • Not on any of those drugs! Thanks

You may also like...