Constantly ill

Am posting to see if anyone can help with a query :

Have been on monthly injections since December but seem to constantly feel ill! I have really itchy skin , dizzy spells and am constantly feeling sick and wondering if it is anything to do with perhaps having too much b12 in my system now! I had it re-tested in January and it was up to 450! I tested negative for PA. So am wondering if maybe I don't need the injections every month! Fed up of being constantly ill !!! Thanks in advance

18 Replies

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  • 450 is low especially if you are injecting monthly, think mine is nearly 2,000! Are you taking folic acid and keeping your magnesium and potassium levels up?

  • My thoughts exactly!

  • Hi Fiona1039

    I am not a medically qualified person and there are others on this forum who will be able to give more advice, however it's early days since you started your b12 injections and how you are feeling may well be the "healing process" you need to go through as the cobamalin gets to work.

    You cannot "overdose" on b12, your body simply gets rid of any excess and although your levels in January look to be "quite high" any tests taken after having started your injections are going to be "skewed".

    You don't say why you were b12 deficient or what your levels were - are you vegetarian or vegan? Do you do a lot of strenuous exercise? Are you diabetic or taking drugs that affect absorption of b12 through the stomach?

    Anyway, your symptoms seem to suggest that the b12 is working and hopefully they will subside in time but there is no set timescale as we are all different.

    I wish you well for the future

  • Haven't been taking folic acid maybe I should start!! I think it's an absorption issue with me having been on omeperazole and now Zantac for about 8 years!! I was also very low in ferritin for years until I finally had an iron transfusion! I suffer with IBS(D) which I think is part of the issue also! I feel like a hypochondriac at the moment! I can feel good for a few days then wham am ill all over again getting me down! Don't think it helps that my family just shake their head! Think maybe a GP visit is in order!

  • Acid suppressant medication is so over used! You have acid in your stomach for a reason, and it's escape is more likely to be due to too little acid than too much. Here's a good article about stomach acid

    stopthethyroidmadness.com/s...

    And your IBS may be related to poor digestion too. Have you been tested for coeliac disease? And even if it is negative it is most certainly worth trying a period (of several months) gluten free. I have learned the hard way the my IBS was caused by gluten, and my heartburn by certain other cereal grains. I control it all with diet now.

  • How recently was your iron checked? I've found that itching skin can be iron anaemia. Have you been tested for Coeliac?

  • Unless you test positive for celiac you could try a lactose free diet. It is a very easy thing to try and ma

  • Hi I am coeliac and PA it sounds like you should have a coeliac test, but do not go on a gluten free diet before you have the test it will compromise the test result. Good luck.

  • Hi haven't been checked for Coeliac disease! They checked my ferritin last month and it was fine!! Am due another b12 this Wednesday and wonder if I should wait till I gave spoken to my GP

  • I'm sorry to hear you're not feeling the best, but I don't think you should stop your B12 injections. There is no toxic level of B12 so is safe to take, even if you don't really need it. If your body doesn't need B12 it will simply pass out of your body in your urine, turning it a pink colour. If that's not happening with you, you can rest assured that you're not overdosing. Dizzy spells could actually mean that you still don't have enough B12 in your system. Doctors don't seem to be aware that once you start taking a B12 supplement of any kind, your blood levels will build up, but this doesn't necessarily mean that you are no longer deficient. PA tests can also be unreliable. Just because you tested negative, doesn't necessarily mean that you don't have PA. The feeling of nausea could perhaps be linked to a food intolerance. PPIs like omaprezole and zantac can ruin your stomach's ability to produce stomach acid, even once you come off them. if your were suffering from acid reflux, it could very well mean you have a gluten intolerance. This happened to me. I didn't know gluten was causing my acid reflux and like you, I was on a PPI for 8 years. I finally decided to stop taking them when I went gluten free. I no longer have acid reflux, but I have an even bigger problem now. very little, if any, stomach acid. I can no longer digest animal protein and have had to go onto a vegan diet and I don't even digest that very well. My kidneys have been affected due to undigested protein passing out through them. Try to get off the PPIs, that would be my main suggestion. The lack of acid could even be what's making you feel nauseous. Best wishes.

  • I had that kind of discomfort with methylcobalamin. The itchy skin soon turned to cystic acne. I wish I hadn't pushed through it.

    You may also wish to get checked for other deficiencies like iron, magnesium, potassium, other Bs. These can get low too.

  • "They checked my ferritin last month and it was fine!! "

    Copies of test results

    Did you get copies of the test result? I learnt from experience that results I was told over the phone or face to face were "normal" were not always normal when I got a paper copy. Most surgeries will charge for making copies.

    Hypokalaemia

    Have your potassium levels been checked? Some people can experience a drop in potassium (hypokalaemia) when they start B12 deficiency treatment.

    patient.info/doctor/hypokal...

    IBS

    "I suffer with IBS(D) which I think is part of the issue also!"

    My IBS symptoms went when I gave up gluten and dairy. I think dietary changes should be discussed with GPs but in my case there was no interest in my IBS whatsoever so I had to experiment on myself.

    Negative Coeliac results

    I did have a coeliac test which was negative but sometimes wonder if I was eating enough gluten to produce lots of antibodies. It is possible to still have Coeliac disease even if Coeliac test is negative.

    I have found out since that if coeliac type symptoms continue after a negative coeliac test there are other tests a GP should consider doing. Needless to say, I did not get these other tests. See links for info about further tests after a negative result.

    coeliac.org.uk/coeliac-dise...

    coeliac.org.uk/coeliac-dise...

    Coeliac UK Helpline 0333 332 2033

    "I tested negative for PA"

    It is possible to have PA even if you have a negative test result. Martyn Hooper, the chair of the PAS tested negative more than once before testing positive.

    The "BCSH Cobalamin and Folate Guidelines" mention "Antibody Negative Pernicious Anaemia". One page it is mentioned on is page 29, a diagnosis and treatment flowchart. I believe Martyn Hooper mentions Antibody Negative Pernicious Anaemia in his book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" I gave a copy of the BCSh Cobalamin Guideline aand Martyn Hooper's book to my GPs.

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

  • Hi.have just started injections of b12..like you been feeling awful..got 4 more to and if i still feel ill will be back to docs..i sugest a visit to you doc and get every thing you worried bout checked..i no i will lolxxgood luck

  • Thank you very much to everyone that has replied to me am really greatful for all the advice! Lots to look into so going to start at the top and try and get to the bottom of this all! Really owe it to my family who must be fed up

    Of hearing me saying that I am shattered and feeling ill all the time 😤

  • Hi Fiona,

    as people have been saying, the co factors are very important, the B12 you are injecting needs them to work properly and, believe me, if you don't take them you can feel very ill - I've experienced this once or twice and it's awful. You begin to know instinctively if you need more of something.

    B12 has no known toxic level and your body will excrete what you don't use, and, as Jo55 says, 450 is still low you need to be at least in1000's for optimum healing ( however some doctors say that if you are that high you don't need injections any more - not true, you will always need them) mostly people tend not to have their serum levels re checked for that reason and the numbers are irrelevant anyway, it's the symptoms that count (that's what the doctor should be treating you by - many don't though).

    There is a fb group which is affiliated to this one which you might wish to have a look at, it's a closed group so none of your comments ever appear on your own fb page, your choice obviously. :)

    Hope you start feeling a little better soon but it does take time, it's taken a long time to get to this point so healing won't happen overnight.

    I'm by no means an expert, there are lots of people much more knowledgeable than me, so keep on asking questions, this group will help you (as will the fb group if you choose to join). :) Don't give up :)

  • Hi Fiona

    Hope you're better now!

    What you describe is what happened to me when I started taking methylcobalamin lozenges in high doses - I got symptoms of potassium deficiency (which can actually be fatal!) and when I took potassium supplements I got other symptoms, and am now starting folate supplements instead of folic acid, which can working against the b12, allegedly! You'll have to get enough magnesium too, and E and D - well, it's science, isn't it, but at least see to that you get enough potassium and folate and magnesium (and D?) and at least a "multi" for the rest of it!

    Sorry if you allready found out - but maybe there'll be others reading this thread for info....

  • Thanks for your reply! Did you have the bloating or was it the nausea that you suffered from? What is the best thing to take to make sure I am getting enough potassium

  • sweet potatoes, orange juice, beet greens, potatoes, white beans, dates, yoghurt, tomato sauce, raisins, bananas...all rich in potassium.

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