After 3 months of supplement, is it still B12?

Hello, it's the first time I'm writing here, I hope I can receive some help.

Now My story. I will start with the past, and at the end write the symptoms that I have now. I'm Italian, so I hope it's easily understandable.

Everything started with pins and needles in my left hand and left part of the face, and I thought it was because of the position I was having in front of the PC. But soon instead of getting better, the pins and needles started to extend to the rest of the left part of my body, and then even to the right.

I was feeling numbness in my scalp, head, face, in my arms and hands, legs and feet, in my back, sometimes in my nose, my butt and even to the tongue. The feeling was changing from one part to the other of my body, while there were some parts (left hand and face) that were more constant. The pins and needles sometimes were numbness, other pins and needles, other burning sensation, and usually get stronger at night when I lay on the bed. I had a lot of other symptoms: fatigue, pain to my articulations and bones, headache, flu like symptoms, difficulty to concentrate, lower vision to the left eye and sometimes to both eyes, tachycardia, short breath, nausea. Some days I had just to lay on the bed all day long because I couldn't do anything else, I had no energy.

One time at night I had a strong feeling of numbness at my tongue and feeling like it was extending at my thoat: it was like I couldn't feel it anymore and I didn't have control over it, giving me the impression of being suffocated. So I was getting scared and right after was coming tachycardia and short breath: a couple of times I had very strong attacks and I felt like I was about to faint or having an heart attack. After some mis-diagnosis and several blood tests, after one month of the beginning of the symptoms I was found B12 deficiency. My level was 127 pg/mL (normal 191-663). I have to point out that the level was checked while I was taking supplement of Folic Acid (because I have Thalassemia Minor), that I read can influence the B12 value. Folates value in fact was > 20 ng/mL (normal 4,6-18,7).

So I did 8 injections (days 1,2,3,4,11,18,25,32) of B12 (cyano) 1000 mcg, B1 100 mg, B6 100 mg

Around day 15, I also started to take sub lingual pills of B12 Methylcobalamine 1000 mcg. I've never stopped these pills, and I'm still taking now, once a day in the morning empty stomach.

After starting the injections, my conditions got initially worse, and after 15-20 days started to improve. All the symptoms never disappeared completely, but I reached a moment where I was feeling quite good energetically, and I was having only numbness to my left hand and left part of the face (where everything began). But then i started to get worse again.

Now after 4 months from the beginning of the symptoms and 3 months from the beginning of the treatment, some days I'm in acceptable conditions, and I can even go cycling a couple of hours, others (like today) I can't move from home. The main symptoms I'm experiencing now are still the pins and needles (less than the worst period but still present), tachycardia and short breath, that are more constant than before, even if without the peaks I had earlier, and weakness.

I did also a Nuclear Magnetic Resonance of my brain, that was perfect, no Brain degeneration was visible, and neurological visit at the hospital.

I never had panic attack before, no depression, I'm not nervous, I don't suffer cervical pain, Magnesium and Calcium levels were checked and are ok, I have no diabetes. I've been Vegetarian (not vegan) for the last 3 years, and never supplemented before B12.

So after this long story, I'm wondering if it might be possible that after 3 months of treatment my life is still so bad? Can it be only B12, or should I search for other causes? In particular according to what I read in internet, B12 deficiency can give pins and needles, but usually limited to feet and hands, while for me it was much more extended all over the body since the beginning.

The Nuclear Magnetic Resonance of my brain, is enough to exclude Multiple Sclerosis, or should I do more tests?

Now I did more blood tests, but I'll have the result only in 3 weeks. I'm checking again b12 + homocisteine, folates, several types of Iron, celiac disease, Vitamin D3 (25oh), anti corps to check b12 absorption. I also was once again 2 weeks ago at the emergency, one day I was feeling very bad. And then also a visit to hematology. But still I didn't solve anything.

Any help? Anybody in the same situation, or somebody that can give me some clues? Thank you very much! Davide

9 Replies

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  • You need to find out if during all of the blood tests that were done, was one of them the B12 MMA test (Active B12). The reason I ask is that, while having symptoms that are no where as bad as yours, my B12 numbers were out of wack. A total serum (standard) B12 test came back at 698. Over the top of the range. But I had the B12 MMA test done the first time this year and it came back as low B6, B9 and low B12.

  • Unfortunetely it looks like it's not available in Italy, I tried to see in several laboratories. The best I can get is homocisteine

  • Perhaps you could try this Active B12 home testing kit which someone mentioned here.

    homebloodtests.co.uk/epages...

    Apparently discount code is TUK10 for £10 off.

  • I took the results of more blood test today. Now the B12 level is high (733) and homocisteine low (7), so I'm a little bit worried it might not be only B12, because even if my blood value are ok, I still have all the symptoms. I uploaded a table with my blood tests from last 3 months compared. It's possible to see it here

    nomadtravellers.com/images/...

    To be understandable I should point out that:

    I have beta thalassemia

    blood tests of 08/02/13 were done after breakfast, at the emergency hospital in Romania

    blood tests of 26/02/13 were done in a lab in Romania after a treatment with folic acid, vitamin c, multivitamins, magnesium, that I all stopped 3 days before the test

    blood test of 14/04/13 at the emergency hospital in Italy

    blood test of 22/04/13 in a lab in Italy, after 8 injections ( 1000mcg B12 cyanocobalamin, 100mg B1 tiamina cloridato, 100mg B6 pirodissina cloridato, 20mg lidocaina cloridato, 40 mg alcool benzilico, potassiium esaliano ferrato) last one done around 4th of April; one daily sublingual pill of methylcobalamin 1000 mcg+multivitamins and multiminerals (ultimate coral club) stopped 5 days before the tests.

  • Hi Pidias81,Maybe as we'll asB12deficiency or even Pernicious Anaemia and Thalassemia minor you have a thyroid disorder many of the symptoms are the same as under active thyroid. WHy not have blood tests for thyroid function? the full test is :freeT4, total T4, freeT3, TotalT3,and Reverse T3, andTSH. For a good website thyroiduk.org. Also for there is a very informative book:Pernicious anaemia the forgotten disease by Martyn Cooper,publishers hammersmithbooks.co.uk

    try and persevere with the methylcobalamine I think it takes time for the neurological symptoms to improve,and perhaps change your diet the book "Pernicious Anaemia the forgotten disease"has a lot info about diet, you can get from Amazon

  • Thank you for the suggestion. I took it into consideration (hyperthyroidism), but even if I have some similar symptoms I'm missing others, like weight loss (but it looks like 10% of the people don't experience it) diarrhea, intolerance to heat, and hyperactivity. But yes, clearly it's a good idea to add it to the next set of blood tests.

  • How frequently are you having your B12 injections now? Everyone is different, and some people just need the injections more frequently than they are given, in order to feel well.

  • Did you research MTHFR mutations? My family has this gene that makes it difficult to absorb folic acid and B12. mthfr.net/

  • Hi,

    Hope you are starting to feel better.

    Just wondering if you feel that the Beta Thalassemia minor could be masking something? I too have this and am having difficulty getting any diagnosis of b12 def due to the small rbc that thalassemia cause rather than the larger cells that Drs typically look for. I also feel that I could be hypothyroid.

    Were you advised to take folic acid for thalassemia as I have never been advised to take anything for this?

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