Vitamin B12

Allergies, blood and immune system
1

Hi everyone. 

Well, back in 2013 I went to the doctors regarding a defiency in vitamin b12, this was due to my hair starting to fall out, tiredness, moodiness and a range of other symptoms. The doctor said it sounded almost as though it could be a deficiency, therefore gave me a blood test to confirm. My bloods came came back and they showed that there was a deficiency. I'd alos been tested for pernicious anaemia, however, the test for that came back negative, suggesting that I could fully absorb the vitamin. I was happy with the results and was told to take a two months supply of folic acid and vitamin b12. After that I would have to have my boods redone just to check my levels were improving. Again, went to be checked and my levels were okay, so I was told to take the tablets to keep my levels up. 

I admit, overtme I stopped taking them, as I;d been told that your body can store vitamin b12 for three months. So, I thought that if and when the sympoms started to appear, I'd know to take my tablets again. 

Well, I haven't taken any tablets for a while now, I've let my symptoms get the better of me. But, analysing the symptoms I'm experiencing now to the ones I was experiencing when I was first diagnosed, I feel like they may have got worse. I'm now experiencing symptoms of extreme tiredness, despite the fact that I go to bed at a suitable time and get enough sleep, I get tingly hands and feet, along with pins and needles, seem to be foretting certain words for things when trying to explain things.Suffered with some dizziness a couple of months back, which doctors never gave me a diagnosis for, just tablets to stop it when it came on. 

So, I'm reluctant to go back to the doctors or not and ask to get my leve;s checked again, or whether to just start taking my tablets. Although taking the tablets don't take much of an affect. My mum is also vitamin b12 deficient, she has pernicious anaemia, which makes me wonder if that can come on over time, or whether once ive been tested and the test has come back negative that, thats it. 

any help and advice would be greatly received. 

2

Hi Katy567, It sounds as though you really need to go back to your GP and get re-tested. I doubt whether the tablets you were taking were enough to replace all the B12 stores you had lost. Also, as you had stopped taking them, those stores would be very quickly depleted. If your Mum is diagnosed with PA, then the chances are you will develop it, and perhaps this is what has happened. I really wish you well, and hope that you can get some treatment from your doctor. Best wishes Marion

3

Hi Marion,

Thank you for your reply. So, can you develop pernicious anaemia, even if your just defecient in b12? I gathered that because I'd already been tested for it and the test had come back okay, that would be it. Would be very interesting to see if that is the reason then. I seem to experience a lot of tinnitus in a quiet room now too, can't say I've noticed that symptom much before. My doctors can be quite evasive though, so should I request that I have a blood test done, or wait for the doctor to give me one? I don't want the neurological symptoms that I seem to be expereincing to get worse. 

The treatement my mum has received has been very poor at times. she sufferes with a lot of tiredness and although she has her injections every three months, I cant say that they do her much good, or that they make much of a difference. Shes mentioned to the nurse about how tired she still is but, apparently according to the nurse the doctors  wont do a lot. 

So, hoping I might be taking a little bit more seriously. 

4

Hi again Katy, I think part of the problem is that the testing itself is not one hundred percent reliable. So many things can be changing all the time. You could be testing positive for it one day, but negative on another. I agree wholeheartedly that the injections of one every three months is not enough. Lots of people seem to use supplements like sublingual tablets, lozenges, and sprays. Some are even ordering the B12 from abroad and doing their own injections. (I've not contemplated that yet!) I would think it reasonable to ask to be re-tested because of your Mum, just say you are feeling much worse and list your symptoms. The Pernicious Anaemia Society have a very good website, where you can printout a symptoms list! There is also a book called Pernicious Anaemia The Forgotten Disease by Martyn Hooper (founder of the society). In it he covers all the causes of low B12, and explains a lot, together with case histories, including his own. Worth a read. Marion

5

Hi Katy, I was diagnosed with a vitamin b12 deficiency 2 years ago. I had 6 vitamjn b12 injections over 2 weeks and had a blood test to test for pernicious anemia which came back negative. As I'm vegetarian the doctor said it was diet related so after my injections I started taking a multi-vitamin tablet with 100%rda b12 and upped my dairy in-take. I thought that would solve the problem, although around 4 months later my symptoms slowly started to return. I went back to the doctor who told me my levels were fine and that I do not have pernicious anemia and that I shouldn't be experiencing any symptoms. I felt a bit silly so left it. A while later I wanted a second opinion, I changed surgeries because I gad moved so asked my new gp. Again she said it was fine and to just keep taking the tablets. I asked what my levels were and they were around 150 which is low. My symptoms had got a lot worse and I was experiencing things I hadn't experienced before even though my levels were lower before. After speaking to another doctor when my levels were 142, he finally agreed I may have pernicious anemia even though the blood test was negative and agreed to try the loading dose injections again. They finished around a week ago and I feel so much better already! I'm now being treated for pernicious anemia and will have an injection every 12 weeks. Apparently the test for pernicious anemia is not accurate and false positives/negatives are very common. A b12 deficiency that is just diet-related is very uncommon because there are a lot of foods that contain b12. It is really only vegans who eat no animal products at all that are at risk. I even know someone who has been vegan for 7 years and takes no supplements who's b12 levels are good. Pernicious anemia runs in families so the fact your Mum has it and you have low b12 seems too much of a coincidence. You definitely need to go back to your doctor and ask for more tests, make a list of your symptoms and say you think you would benefit from having regular injections. You should have had loading dose injections when your levels were low last time because your body can only absorb a small amount each day (especially if you have pernicious anemia) it takes a long time to build the levels up again. So you need to ask to have the loading dose injections aswell. It's hard to be firm with your doctor but it sounds like you definitely need these injections.

Good luck!

6

Thank you so much for your reply. I definitely think that I'm going to make an appontment with my doctor and keep perisiting. I've not felt right for ages, so I'm convinced something isn't right. Hopefully ilI get the answers I want and need. 

I'm glad that you also got the answers you needed after all that time.

7

Hi Katy

B12 is naturally absorbed in the intestines from meat and dairy products. If you eat meat and dairy then oral b12 tablets won't help you as the tablets have the same absorption process as meat and dairy. Only 1% of b12 is absorbed by an oral tablet if you can't absorb naturally. You have now developed neurological symptoms due to lack of adequate treatment which requires an intensive b12 treatment of injections. The pernacious anaemia tests are only 60% accurate this means 40% of pernicious anaemia patients are receiving false results.

The BCSH cobalamin guidelines state that a level of 200 is deficient in the uk and should be treated with intramuscular 1ml hydroxo injections. Loading doses of b12 for patients with neurological symptoms is alternate days until no further improvement then every 8 weeks. Once treatment has commenced there is no need to retest b12 levels as the injections cause falsely high b12 serum results. The reason for this is because the b12 serum result measures both active and inactive b12 in the blood. A homocysteine test can give a better reading of deficiency at cellular level.

Once you begin b12 treatment ensure your folate and ferritin are good levels.

B12 uses folate to become active and metabolise into the body's cells. Once b12 has metabolised out of the blood to the cells, the body uses ferritin (iron stores) to produce new blood cells.

Ideally you would want your folate to be in high end of normal range eg. 15-20 for b12 injections to work at optimum levels. Ferritin should be around 80 for optimum level.

Ask for a vitamin d test too as vitamin d can become low with an absorption problem. Also take daily b complex once you start b12 as other b vitamins can become low. Eat bananas and dark chocolate for your potassium. I use Epsom salts in bath water for magnesium too.

8

100% RDA is not enough if you have any kind of absorbtion issue. There's tablets with 30,000% RDA.