B12 Advice & Results Help Really Needed!

[AnnaR10]

Hi all, thank you so much for clicking on my post I really need your help! I recently undertook the B12+ Testing at St Thomas' Hospital and received the results today - I have nearly all of the symptoms of B12 deficiency (I will list below) but the results seem to indicate "normal" which has really surprised me (perhaps my age (26) may be the cause - I feel like the results are low for my age, if that makes sense to you).

Vitamin B12 (Serum): 425 ng/l (Range: 187-883)

Methylmalonic Acid: 117 nmol/L (Range: 0-280)

Active B12 (HoloTC): > 128 pmol/L (Range: 25-108)

Homocysteine: 8.2 umol/L (Range: 0.0-15.0)

Serum Folate: 13.0 ug/L (Range: 3.1 - 20.5)

I am 26 and with a family history of B12 deficiency - my grandfather, two aunts and cousin (all on the same side of the family) currently receive B12 injections. I have also been a vegetarian since the age of 9.

My symptoms are extensive and I have been having them on and off for the last 4-5 months, with the paraesthesia (waking up with arms from elbow downwards feeling extremely heavy with a sensation of constricting blood flow, tingling in hands and feet, burning feet, prickling sensation in toes on one foot and burning calves in the morning) developing over the past three weeks.

- Bloating - Has been agony at times, stomach has swelled to its maximum and rock hard - I have often had to lie on floor or curl on bed to try to ease this severe pain.

- Fatigue - wake up tired and exhausted and often have to nap at 4pm as it is literally impossible to keep awake any longer. Muscles also feel fatigued, for example arms feel heavy after blowdrying hair.

- Severe brain fog - find it difficult to concentrate or focus for more than 15-20 minutes at a time - getting only about three hours of 'good brain time' a day, I am now forgetting small things.

- Lightheadedness and a sensations of vertigo.

- Also noticed mood swings (something I am not used to having) happening quite regularly over the last 3-4 months. I am really suffering with lack of motivation and disinterest. Having episodes of quite considerable depression now - not wanting to go out with friends, despondent etc.

- Shortness of Breath - this is a big one, I have often had episodes of 'gasping' and feeling like chest is closing in.

- Dry Mouth - almost unbearable dry mouth at times (thought I was diabetic as that is how severely thirsty I have been but it has been confirmed this is definitely not the case). Sometimes this is accompanied by a foul metallic taste in mouth. Additionally I had a period of time where it felt like there was a lump in my throat.

- Burning Tongue - Again, unbearable at times, had to 'scratch' it on teeth - feels like a dry burning patch on the front of my tongue.

- Heart Palpitations: These happen quite frequently - before I knew any better I was taking aspirin as they felt 'stroke like' that is how strong and noticeable they are.

- Chest pains - sensations of sharp little electric shocks.

- Dry Hair & Eyebrows which are falling out, I can see the root attached.

- Yellow hands and white nails - freezing cold and cannot be warmed up, feet are often freezing cold as well.

- Fullness in left ear and occasional tinnitus.

- And as mentioned above - paraesthesia.

I apologise for the length of my post but I am desperate here (fed up of feeling just so dreadfully unwell). I am looking for any advice - reading this forum over the past few weeks I have seen how difficult it is for those who are not drastically deficient to get GPs to understand/proceed with injections - so I am terrified of the uphill battle I am going to face so any advice or information you can give to increase my arsenal for my meeting with my doctor would be so greatly appreciated thank you!

[Gambit62 Administrator]

Unfortunately none of the results above is indicative of a B12 deficiency. In fact the MMA and homocysteine results make it extremely unlikely.

What other conditions have been ruled out? eg thyroid, coeliacs, crohn's?

Do you eat dairy and egg and/or use breakfast cereals fortified with B12.

[wedgewood]

I agree with Gambit. but yes those symptoms sound like B12 deficiency .Of course you could try supplementing with B12. With those results I’m afraid that you wouldn’t get any injections from the NHS. If you want to try self injecting it would do you no harm.

I had terrible, painful bloating just before my PA diagnosis .I stopped it by taking a probiotic called Symprove ,excellent , but expensive . I keep it at bay by having a daily spoonful of raw organic sauerkraut which is full of ptobiotics .. You may have low /no stomach acid (another symptom of P.A. ) This upsets the stomach flora and bad bacteria take hold causing bloating .

You must be feeling desperate . But self-injecting would do you no harm at all ( look at past posts for info on that . )Also probiotics are harmless . in fact they are extremely beneficial for everyone .

[Alesia]

Hi AnnaR10 I am no expert but I had these exact same symptoms, my B12 was 350 Active B12 same as yours >128 Homocysteine 11.8 (I had been taking high dose oral B12 supplements for 4 months prior to tests though) GP said not B12d so did consultant but Dr Chandy disagreed and said the tests mean nothing they are all flawed including the Homo/Active/MMA and advised me to get injections which I did and hey presto after a few months nearly every symptom was gone! So there is a good chance it is B12 deficiency & like wedgewood says it'll do no harm to try injections