Vit B12 Concern

mrsD · 03-12-2009, 11:57 AM

Quote:

Originally Posted by Jay1980

well maybe not "body builder" , but I did gain considerable size lifting weights a for a couple years, but I stopped last year when I got shoulder tendinitis...

you mentioned that b12 deficency does not happen over night. I certainly agree with that, but I would think my symptoms would be gradual, as the levels dropped. but my "burning" skin sensation came on rather quickly. Sometimes I wonder if low b12 is even the culprit... but I've had so many tests, and everything is coming up normal, except my b12 was at 260.

I've read other b12 suffer stories and mine seem so different, which is only reinforcing my concern. Have you ever heard of a rapid onset of symptoms that I had (and painful) and it be because of low b12?

I mean I am feeling better , the pain has diminished greatly since my last b12 injection, which suggests it was my low b12 level... but my crazy paranoid mind thinks maybe increasing my b12 is just "masking" the symptoms and there is something else going on. (I warned I was a hypochondriac!!)

does my symptoms sound typical of a b12 problem?

You don't know how long you have been low. By the time people get tested they can have low levels for years. When the serum gets low, then the spinal fluid gets low, since it transports B12 from the serum.

Even if your problem is something else, at least you are fixing something that may impact you later down the road.

Rapid onset of symptoms may be due to a trigger. Most likely viral. I just had a horrid sore throat... with a terrible fever, and during that fever I had the worst all over burning I have ever had. I finally got antibiotics for it, but the thought is that it was viral, then complicated by bacteria. The burning left, and I am still recovering and being able to swallow again. I think it is a reactivated Epstein Barr Virus, because I had a terrible throat like this when I had Mono in college.

People get viruses all the time.
But the folks who come here with body burning all report rapid progression, and puzzlement as to what triggered it.

Bruce 01 · 03-12-2009, 02:30 PM

Quote:

Originally Posted by Jay1980

I asked my doctor WHY my b12 levels got low, if I have the Intrisic Factor, and she says they dont know. This is sort of unacceptable! Am I wrong to feel this way? I admit I am a worrier and hypochondriac, but I am concerned!

I was diagnosed with B12d 6 months ago after numerous, unexplained neurological symptoms, full story in the intro thread, titled "Hi I need some advice."

A few weeks ago I saw a neurologist, he ordered a brain scan which came back normal, next Monday I am to have an MRI of my neck.

So far neither he or my regular doctor has shown any interest in finding out WHY I was/am B12d. I would certainly like to know. I haven't pushed the point, but the neuro doesn't even seem interested in my B12.

I'm self-employed and pay $4500 a year for health insurance and this is the level of care I get?

pabb · 03-12-2009, 02:58 PM

Quote:

Originally Posted by Jay1980

Hello friends,

I'm new around here (Hi

), and had some concerns with vitamin b12. First let me give you a brief background.

I'm a 29 yr old male, in good shape. I work out regularly, and watch what I eat. Back in Early January, I noticed a slight burning pain in my upper back. Within a week, that burning sensation was all over my back, waist line, and arms! It was horrible! Like a terrible terrible sunburn, yet no rash or anything! I went to the ER 3 times that week, because the pain was so intense, and my anxiety and fear only made it worse. The ER did absolutely nothing... They only said my vitals are fine, and I have to follow up with a neurologist.

My family physcian ordered blood tests, for autoimmune diseases, HIV, Thryroid, lyme, liver function, kidney function, cbc, and vit b12.

Everything turned out normal, except my Vitamin B12 Level was at 260. According to the Lab Values, that was borderline low, but still considered "normal". My doctor started giving me weekly b12 shots for 4 weeks, to boost the levels back up. 5 weeks later, after my first b12 test, my levels were at 850, and was I feeling soo much better. Some slight burning but nothing like how it was. The doctor stoped the injections, and asked i supplement bith 1000 IU B12 pills, and a good B Complex. Which I now take everyday.

Mean while, I've done alot of reading on B12, and asked my doctor to test me for Pernicious Anemia and Instric Factor. The tests show, I dont have the Anemia, and I do have the Instric Factor. So I am unsure WHY my B12 level dropped like it did. Though I never really took any vitamins, I was always a heavy meat eater.

Anyway, Last week I got another b12 level test (4 weeks after my 850 score) and it dropped to 540! I dont understand why?? I take so much Vitamin b12, every day! I thought my body is suppose to store YEARS worth of b12, why would it deplete again so fast?

I am so worried it will drop really low, and the burning pain will be really bad again. I have another appointment with my doctor, but that isnt until 2 weeks from now.

If anyone has any idea, I'd really, really appreciate it! Why Cant I absorb B12? The tests show I do have the instrict factor. I'm getting really concerned...

- Jason

if your avatar is a pic of YOU, i "see" the need to consider celiac disease....
which may be causing malabsorbtion.....and you may want to check out a larger dose of D as well....honestly trying a gluten free diet for several months may prove enlightening

Jay1980 · 03-12-2009, 05:54 PM

MrsD,

I have seen two neurologists. The first one I saw actually thought it was something viral, and it should just pass.. He didnt seem very concerned. So thats why I changed neurologists. Maybe it was, and I am just recovering? I mean the burning pain has went down a great deal since January, and now I just get these flairs, in certain spots (like shoulders and waist line). I notice my waist is very sensitive to cold air - is that all related?

Bruce,

I really feel your frustration... Make sure you tell us how you make out w/ your neck MRI. I had one done, and they found two mild herniated discs.

Pabb,

I am really interested to know what you "see" based on my picture? lol As for the Celiac Condition, it is certainly worth looking into. I've had soo many tests done, I am running out of options!

I just want to feel better

Thanks Guys.

glenntaj · 03-13-2009, 05:32 AM

--pabb is probably commenting on the rather Caucasian features in the picture.

Genetically speaking, while celiac/gluten intolerance is more widespread than previously thought, it is still most common in those of Northern and Western European descent. (Such people have a genetic background that makes them prone to all sorts of autoimmune syndromes.) People with blue eyes and fair complexions should probably be tested immediately, though testing should not be limited to them.

With frank celiac, the villi of the small intestine can be damaged sufficiently that all sorts of malabsorption symptoms can occur, and yet many people with such damage are otherwise only slightly symptomatic or asymptomatic, until nutrient malabsorption triggers a cascade.

We have had some people on these boards who have said, at least insofar as B12 levels are concerned, that they only had small, nagging symptoms until some point at which they tripped and began to deteriorate rapidly. Our beloved Rose, who really began a lot of the threads here and on Braintalk on her problems with B12 deficiency, and who did a lot of research into the subject, was one. She was lucky to emerge relatively intact--she was misdiagnosed for a long time. (And part of the reason for that, as she and others have pointed out, was that her B12 levels were being interpreted as "normal", as your 260 was--those lower range limits, most of us agree, are much too low.) You can read her story and a lot about B12 here:

http://roseannster.googlepages.com/home

Another person who has had an interesting B12 history is Cara (jccglutenfree), most likely due to gluten sensitivity (her family is full of people with malabsorption problems, due to gluten and other factors. Cara invented the Gluten File, probably the most comprehensive database on the subject yet accumulated, and it's definitely worth reading some of that material:

http://jccglutenfree.googlepages.com/

darlindeb25 · 03-13-2009, 07:21 AM

Quote:

I am really interested to know what you "see" based on my picture? lol As for the Celiac Condition, it is certainly worth looking into. I've had soo many tests done, I am running out of options!

Jay, I am not sure what she see's in the pic either, cause we celiac's all look like normal people. Two of my son's doctors told them "you don't look celiac!" What, do we have 2 heads? Many doctors think a celiac has to be a very thin, malnourished looking person, which isn't true. At least half of all celiac's are overweight, and malnourished as well.

Quote:

People with blue eyes and fair complexions should probably be tested immediately, though testing should not be limited to them.

I do not believe this to be true either. I belong to a huge celiac support group, and there are no more blue eyes with fair complexions then there are dark eyes, with darker complexions. This is just another myth. The Europeans have believed there are celiac's for much longer than the US has, that's the difference. In Ireland, the children were checked for celiac before going to school...it will be years before the US thinks of that. The US is finally realizing this is not the rare disease they thought it was. 9 years ago, when my sister was diagnosed, her gastro laughed at her when she asked to be tested for celiac, he told her it was so rare, she absolutely could not have it. He was wrong. We have both been gluten free, her 9 years this month, me 9 years in July, and our dad, 4 1/2 years now. We all have brown hair and the darkest brown eyes you will ever see!

So Jay, many people with gluten intolerance will also be B12 deficient. So yes, be checked for celiac, then go gluten free no matter what the results of the testing were, and see if it helps. Many, many people feel much better on a gluten free diet.

pabb · 03-13-2009, 02:12 PM

Quote:

Originally Posted by glenntaj

--pabb is probably commenting on the rather Caucasian features in the picture.

Genetically speaking, while celiac/gluten intolerance is more widespread than previously thought, it is still most common in those of Northern and Western European descent. (Such people have a genetic background that makes them prone to all sorts of autoimmune syndromes.) People with blue eyes and fair complexions should probably be tested immediately, though testing should not be limited to them.

With frank celiac, the villi of the small intestine can be damaged sufficiently that all sorts of malabsorption symptoms can occur, and yet many people with such damage are otherwise only slightly symptomatic or asymptomatic, until nutrient malabsorption triggers a cascade.

We have had some people on these boards who have said, at least insofar as B12 levels are concerned, that they only had small, nagging symptoms until some point at which they tripped and began to deteriorate rapidly. Our beloved Rose, who really began a lot of the threads here and on Braintalk on her problems with B12 deficiency, and who did a lot of research into the subject, was one. She was lucky to emerge relatively intact--she was misdiagnosed for a long time. (And part of the reason for that, as she and others have pointed out, was that her B12 levels were being interpreted as "normal", as your 260 was--those lower range limits, most of us agree, are much too low.) You can read her story and a lot about B12 here:

http://roseannster.googlepages.com/home

Another person who has had an interesting B12 history is Cara (jccglutenfree), most likely due to gluten sensitivity (her family is full of people with malabsorption problems, due to gluten and other factors. Cara invented the Gluten File, probably the most comprehensive database on the subject yet accumulated, and it's definitely worth reading some of that material:

http://jccglutenfree.googlepages.com/

indeed, glenn is correct in his presumption of MY presumption.....lol

daniella · 03-13-2009, 02:22 PM

Hi and welcome though sorry you are suffering. Have you been to a rheumatologist and or endocronolgist? I have rsd and when you mentioned burning and cold I thought of that. Have you had any other issues in your past with health? Sorry I wish I had more answers for you. Hang in there

Jay1980 · 03-14-2009, 11:25 AM

No Daniella, No other health issues that i'm aware of.

As for the Celiac Testing, I'll definitely look into it. My Vit D level was low too. The lab notes say below 20 is considered deficient, and I was at 24. So the doctor gave me 50,000 IU of Vit D to take once a week. Then I take my 1,000 IU's I got over the counter.

On a side note, I had an EMG done of the upper extremities, because the Cervical Spine MRI showed 2 mild herniated discs . The results showed carpel tunnel and ulnar nerve dmg in both arms, and nerve damage in my neck. She wanted to do more blood tests. Alot of it was already done already (lyme, autoimmune). One of the tests she ordered was called SPEP and Immunofication. Not knowing what they were I googled them (HUGE MISTAKE!!). It was testing for Multiple Myeloma. That really put my panic through the roof, that I am now seeing a psychologist. Fortunately the Immunofication Test came back fine, and my doctor said over the phone if I had MM this test would of picked it up. I was so exhausted from all the worry, I never called for the SPEP results, but I'm sure if it was something bad, I would of heard from my doctor. Regardless I see her on Wednesday, so i'll ask.

As you can read/see, its been quite a ride for me these past few months. I think I just need to stay positive that as time passes I am feeling better. I went from horrific burning pain in January, to now small flair ups. Yea somedays are worse then others.. and I've read nerves take a long time to heal. I may never know what "triggered" this all, and as much as i'd like to know, it may just be a mystery.

I appreciate all the replies, this is a great community - and I certainly plan on sticking around

darlindeb25 · 03-15-2009, 06:49 AM

Quote:

On a side note, I had an EMG done of the upper extremities, because the Cervical Spine MRI showed 2 mild herniated discs . The results showed carpel tunnel and ulnar nerve dmg in both arms, and nerve damage in my neck. She wanted to do more blood tests.

Me too, same thing. Sounds exactly like me. The first symptom of neuropathy for me was the carpal tunnel diagnosed about 10 years ago.

My Vitamin D level was 26, and the neuro didn't seem to think it's a problem..so I added Vit D to my regiment. In April he is having more blood work done, and I am going to request my Vit D be tested again, to see if it's improving.

Similar Threads
Thread	Thread Starter	Forum	Replies	Last Post
To Whom It May Concern,	Victorya	The Stumble Inn	11	02-18-2008 02:40 PM

Site Navigation

NeuroTalk Online Support Groups

Vit B12 Concern

NeuroTalk Forums