Newbie - PA? B12? symtoms, help please

[Filbert]

Hi, very new to this, and would really appreciate some help. I'm a reasonably healthy 47 yo male. Recently had symptoms of aching leg muscles in the morning and more worryingly numbness/tingling in left arm and leg. Added to this a sore-ish throat and difficulty in swallowing. With a stiff neck and nausea thrown in..oh, and an odd 'far away' and occasionally manic state of mind! The odd feelings have been going on for a few weeks but the numbness prompted me to go to the doctor last week - I was fearing stroke/heart issues. GP took blood and all came back ok - (my B12 was 280 which may be on the low side..?). Going for neuro scans next week to check nerves, neck, etc. Blood pressure was high, but I put that down to thinking that I was on the way out...!

Other issues were episodes of a weird all-consuming tiredness and a pain in chest (ecg showed all ok). 3rd rib down like a pulled muscle pain, but not constant.

A friend of mine recommended the B12 spray from Holland and Barrett and the patches. I've been taking for 6 days and do feel a little less tired, and the episodes are less frequent - but still there.

So, in your experiences, and having been on the forum for longer than I have, does anyone have any advice/theories/experiences that match with the symptoms?

Many thanks

David

[Gambit62 Administrator]

Have you looked through the pinned posts - suggest you do.

The ranges for B12 are based on statistical averages but people are not statistically average. And B12 just happens to be one thing where people vary a lot - so whilst 280 might be okay for a lot of people it also isn't an okay level for significant numbers of people so - your symptoms could be down to B12. You need to push for your doctor to treat you - as recommended in UK guidelines - and probably local guidelines if you aren't based in the UK - that treatment should be based on symptoms rather than absolute test scores. - Plenty of materials to support you on that in the pinned posts.

Full list of B12 deficiency can be found here

pernicious-anaemia-society....

[Filbert in reply to Gambit62]

Hi - was looking for the sticky posts, but couldn't see them...got them now! Thanks

[clivealive Forum Support]

Hi Filbert did your doctor check your folate level as this is essential to process the B12 you are taking.

[Filbert in reply to clivealive]

Not sure what they were, tbh. I'll ask on Monday. Thanks

[ndodge]

Hi Filbert,

When my B12 level came back at 290, I was very fatigued and had neurological symptoms such as dizziness, unsteady gait, feeling unbalanced while walking, burning toes, sore tongue, tinnitus. And arms and hands falling asleep, believe this is referred to as pins and needles? When I bent over for more than a minute, my right eye would spontaneously dilate, and I'd feel very wonky. I think I had more symptoms, just can't remember them all right now.

Since getting B12 injections from my naturopathic doctor & who now gives me a prescription so I can self inject every other day, all of my symptoms are gone except the tinnitus, which may take awhile to go away, as that was my first symptom years ago.

So that was a long answer to your question about your B12 level causing symptoms. I'm not a medical professional, just someone who had lots of symptoms when my levels were as low as yours. B12 injections would probably help you a lot!

Best of luck

[Filbert in reply to ndodge]

Thanks for the reply. This is all a bit new, and I'm not sure which of my ailments are connected to what! I can go most of the day symptom free, then have bouts of symptoms, usually accompanied by/triggered by burning/sore neck and the chest muscle pain. Nothing is constant and there doesn't seem to be any pattern as to when the bouts occur.

Thanks again for taking the time to reply.

[ndodge in reply to Filbert]

My pleasure! I hope you get it all figured out. Please don't hesitate to post further questions or just to tell us how you are doing!

[Sleepybunny]

"I've been taking for 6 days and do feel a little less tired,"

There are other tests that can help to diagnose B12 deficiency eg Homocysteine , Active B12, MMA. Have you ever had an IFA (Intrinsic Factor antibody test) which can help to diagnose PA (pernicious anaemia)

Supplementing with b12 prior to diagnostic tests may effect the results. Does your GP know you are supplementing with B12?

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

active-b12.com/frequently-a...

Other B12 links

pernicious-anaemia-society....

martynhooper.com/

b12d.org

patient.info/doctor/pernici...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

"Could It Be b12" by Sally Pacholok and JJ. Stuart

I've assumed you are in UK. have you read the following document? I found page 8 and page 29 particularly useful.

"BCSH Cobalamin and Folate Guidelines"

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

[MariLiz]

Might be a good idea to see if your doctor will do the thyroid blood test for you too. Underactive thyroid leaves you feeling extremely tired and exhausted too. There are a lot of symptoms in common with low B12, and unfortunately the two conditions often occur together. (As in my case!)

Best wishes MariLiz

[Filbert in reply to MariLiz]

Hi - Thanks for the response - I agree, I think i'm going to badger my GP for some more tests - even if it's just to eliminate the likes of thyroid or B12 issues.

I've just come back from a full test of ECG, Ultrasound and X-ray screening and all ok...so now a process of elimination