2 months ago I asked to have my bloods tested due to a long list of symptoms including constant pins and needles in arms and legs as well as shooting pains.
My results for my b12 came back as 167ng but the docs have said this is 'normal' and that I would not have any symptoms relating to b12 at that level. I have asked for treatment to see how I get on and they have refused and do not seem at all interested in my symptoms. I am worried if left untreated the pains will become permanent and at the age of 25 this is not the way I want to be for the rest of my life.
My question is what can I do to try and get this resolved - do I need further testing? I have also paid to see a private GP and they also said my levels were normal but wasn't able to give me an alternative diagnosis.
The doctors have given me 3 months worth of Iron tablets and said 'see how I get on' but after 2 months of taking these tablets nothing has changed and its a 6 week waiting list to see my GP.
Any comments would be much appreciated.
Samantha
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Sjade
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Believe me 167 B12 blood serum level is seriously low. You may get irreversible symptoms if you are not treated quickly. If you don't have pernicious anaemia, you could try taking sublingual methlycobalamin lozenges. If you do have PA you will need injections. Trouble is, if you take B12 supplements, your B12 levels will shoot up,and you won't get the diagnosis you need. If I were you I would first change surgeries, as your doctors at your present surgery may all have the same attitude to B12 deficiency. You really need to be tested for antibodies to the intrinsic factor, and with that low reading, it is essential.( to find out if you have P.A. ) You can even have P.A. without showing the antibodies.
I had the same problem as you with a reading of 150. I had to go to a private G.P. at a Nuffield Hospital(£90) and have a blood test(£70) which showed that I had P.A. Then my doctor gave me the necessary injections. There are others on this site who can probably give you better advice than me, but I wanted you to know that there is lots of help available out here! I wish you all the very best. You will get there is the end.
Thank you for your advice, I have managed to get an appointment tomorrow morning with my GP and I am going to demand further treatment. I have started supplementing b12 but I haven't noticed any benefits, I hope it doesn't affect the results too much? Also does going to the gym training make symptoms worse? I have been going to the gym on the days I have a bit more energy but not sure if i should stop until I receive treatment. Many thanks!
reference the summary - which also goes for treating on basis of symptoms rather than test results because of the risk of permanent neurological damage - and is also quite clear that B12D can be a factor even if anaemia isn't present - though from some of your post it does sound as if you are anaemic
refer to the section on interpreting results of B12 serum test.
MMA (in Urine) and homocysteine are good tests to do in conjunction with B12 to check if there is an underlying deficiency when the results are in the grey area (450 down) but it may be difficult to get GP to do tests in current environment (where there has been critism of unnecessary tests) ... that's assuming you are in the UK
There's another reference from the body that deals with quality controls on assays but don't have it bookmarked on this pc so will add that separately.
Sorry that B12D is such a battle ...
There's a huge overlap with symptoms of other conditions which doesn't make things any easier and to add to the mix people often have more than one thing going on.
You should demand they run the blood test that will test your intrinsic factor, to determine if your body is able to absorb B-12. If it is not then you have Pernicious Anemia that requires B-12 injections for the rest of your life.
I am diabetic, and told my endocrinologist I thought I had a thyroid problem because of all my symptoms which actually mimic a B-12 deficiency. She said I don't have a thyroid after many tests and tested my B-12 and it was 316, she said was very low, but told me to take over the counter B-12 tablets under the tongue, I did that for 1 month at very high does of over 10K IUS per day.
Still felt like crap, called her back demanded her to do something for me, I was so weak and tired. I told her I wanted B=12 injections.
She said medically I cant prescribe them to you unless you have pernicious Anemia, and I told her "what the hell are you waiting for" and to order the test, after all its only a blood test, I told her I would even pay for it if insurance didn't cover it.
Well, she ordered it, and low and behold that is what I have, I've been injecting the B-shots my self for the past 1.5 months and I am starting to feel a little better.
If they wont run the test, I would strongly suggest finding another doctor, look up Pernicious Anemia and your intrinsic factor, it can be a very dangerous disease is not caught and treated.
Thank you for your advice, I have managed to get an appointment tomorrow morning with my GP and I am going to demand further treatment. I have started supplementing b12 but I haven't noticed any benefits, I hope it doesn't affect the results too much for the intrinsic factor. Also does going to the gym training make symptoms worse? I have been going to the gym on the days I have a bit more energy but not sure if i should stop until I receive correct treatment. Many thanks again.
Keep in mind, that it doesn't matter how much over the counter b-12 you take, sub-lingual etc, even if it gets into the blood, and raises your b-12 levels.
If your intrinsic factor tests positive, no amount of over the counter B-12 will help you. Only B-12 injections will work. Don't take my word for it, look it up.
It fills me with despair when I hear your stories like yours and how, at 25 years old, you are let down by these so called professionals.
Wedgewood is right, your levels are very low and, together with the neurological symptoms you already have, it is not 'normal' ! It is essential you are treated without delay, according to the guidelines given by Gambit above, which GP should be following !
This link gives advice on writing to your doctor - you have been fobbed off with iron tablets, which fails to address the cause of why your levels are so low.
You could also include this link and summary of the latest BMJ research document, which gives advice on further tests and when to refer to specialists.
Having done all you can to get the information to your GP, the reality is that you need to start treatment fairly soon and, as this could take time, it might be as well to look into self medication - injections (lots of advice on this site) as well as supplementing with sublingual sprays or tablets (Jarrows 5,000 and 10,000 mcg. are available from Amazon and seem to work well for many people).
Your B12 levels are below the accepted normal of 200. I had similar symptoms. My B12 was 317. Doc wouldn't treat me. I bought B12 5000 micrograms from Amazon. (Solgar) They are sublingual because I am sure I have a malabsorption due to celiac and tablets would not be absorbed. I have been taking them for about 4 weeks. I am slowly feeling better. Especially the tinnitus and nerve pain. Might be worth giving it a go.
Before taking any supplements and affecting any tests why don't you either go to St Thomas's hospital and have the active B12, MMA and homocysteine tests done or have them done privately elsewhere - as mentioned earlier these will give you and your doctor a better picture of where you are at cellular level. Intrinsic factor also needs testing, although can give false negative results. What were your blood test results- you talk about needing iron? Post them and lab ranges and someone will help interpreting them.
Get a comprehensive blood panel test including for P.A. , Vit. D, Folate, K, Magnesium, homocysteine, fasting blood glucose as soon as possible. Then you'll know if you need injected B12. Even if you don't have P.A. you could still have the B12 shots to get your levels up more quickly. You already know your vit B12 test result says it is low. So, supplement with plenty of sublingual B12, K and D3. I'd avoid the Iron tablets, unless you're certain you're very iron deficient. Take a modern multivitamin. The best ones deliberately have no iron.
Now, even though you have found a B12 deficiency, it may still not be the cause of your symptoms. Do your best to figure out other possible causes. Family history. Any history of neurological problems ( which could have been a B12 deficiency, misdiagnosed) . What other ( perhaps less bothersome ) symptoms do you have. Cramps, muscle twitches, feeling unable to relax..... add Magnesium L-Threonate. If you or your parents and grandparents are overweight, especially around the neck, are diabetic , or have had any kind of vascular / blood circulation problems in the past, you may want to investigate that too. Also, have your eyes checked for sound blood circulation.
What is your lifestyle. The human body is designed to move; are you spending a lot of time in one position all day.
Is there a major food group missing from your diet, such as green veg or fish. If so, take steps to make-up for that.
Fried foods, rancid oils, nicotine.... they can degrade your circulation too.
Your blood serum is SO not normal. It is, in fact, very low. I can only recommend you insist on having B12 deficiency taken seriously as a possibility. Arm yourself with the NICE guidelines and point out that you have neurological symptoms and they should be treated. Make a fuss, become a 'difficult' patient. It's the only way to take care of yourself, otherwise they will be fobbing you off until you fall over or get permanent paralysis. It's a shame they should put you through this. x
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