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Ivebeenbetter 09-14-2012 11:41 PM

B12 Deficiency?
 
Ok where do I start? about 1998 when I started developing Vitiligo I suppose. I didn't really understand why I had it and other than it marring my complexion, I didn't think much of it...I went to the dermatologist,who ordered blood tests but I didn't have insurance and I decided not to get the bloodwork done.

Fast forward to a couple of years ago when I noticed a decline in my memory and my ability to speak at length on a subject without stopping mid sentence to recall what I was saying. I chocked it up to age.

Fast forward to last year when I started having what I can only describe as "brain fog"...it went as quickly as it came so I chocked it up to not enough sleep, which I've also suffered from for awhile and I've overlooked..also in the later part of last year I started experiencing palpitations which scared me but also went away before long...I blamed being overweight for that symptom...I also developed an aversion to soda amongst other things as it made me have horrible gastro problems like excessive horrible burping and vomiting...I've stopped drinking it and it has alleviated that problem....

Finally fast forward to last month, where on a Sunday night after having what I've learned is a panic attack, I awoke to brain fog like I've never had before...I was also slightly dizzy and felt had I closed my eyes, I could've fallen...such was my mental state...then over the next couple of days started the palpitations again, the eye pain, the tingling in my extremities, im freezing all the time and ive lost my appetite...this as been everyday for the past month...the palpitations come and go as does the tingling, the brain fog and eye pain are constant although sometimes I have god days were its not so severe and sometimes I have bad days where I feel so tired and foggy and can barely manage to function...I had another panic attack 2 weeks ago and the next day awoke feeling horrible again...I started getting numbness ad tingling in the lower half of my face (under nose to my chin) and in both arms from forearm down so I rushed to the hospital even though I have no insurance only to be diagnosed with parastesthia....I had a basic blood and urine test and nothing was found so I was sent home....I still felt terrible though....i put my symptoms into google and up popped b12 deficiency so I've been reading everything I can find on it...I also found out my grandfather had it and my sister has it....So I made an appt with a GP and went to see him this past wednesday...I expected some resistance and apathy from him but I was still shocked at his lack of knowledge....He insisted that I couldn't have b12 deficiency because my hemoglobin was fine...basically telling me I wasn't anemic so I couldn't have it...I insisted on the uMMA test and he said MethylMalonic acid test? What for? So I told him that if I were truly deficient that my mma levels would be high...he seemed skeptical and said he would see what he could do for me and excused himself from the exam room for a minute...I can only assume to check to see if what I was saying was true or not...he came back and said he would order the uMMA to satisfy me because apparently it wasn't "total quackery and there was some validity to what I told him" I sat there fuming but feeling like I had gotten what I needed so I let it go...He told me that I would need to pay out of pocket for these tests since I don't have insurance and I said ok, thanked him and left....unfortunately I found out the uMMA is 240$ and the Serum B12 is 41$ so I'll be taking the serum b12 and hoping my levels are low enough to get him to prescribe me the shots...I just want to feel normal again :(

Michael949 09-15-2012 04:07 PM

Re: B12 Deficiency?
 
Ivebeenbetter, as someone who does have mild anemia from iron deficiency, I think you are jumping to conclusions

First of all, your hemoglobin has to be low for them to diagnose you with anemia. Only then would they do a B12, folic acid, and iron serum test, to check for the cause of it. Because you're hemoglobin is normal, they can't diagnose you with anemia

However, could you have B12 deficiency without anemia? Maybe, maybe not. Get tested for that, along with iron and folic acid. I know you don't have insurance but they are not that expensive

Are you a vegetarian? Many people who have B12 deficieny do so because they don't eat enough meats, which is where you get B12 from

kikijean 09-15-2012 04:24 PM

Re: B12 Deficiency?
 
Dear Ivebeenbetter,

You ABSOLUTELY sound like you are suffering from B12 defficiency. It is possibly to have profound B12 defficiency without anemia. I'm curious to see what the MVC on your blood count was. That's the measurement of the size of your red blood cells. B12 defficiency causes enlarged red blood cells.

I developed B12 defficiency afetr having gastric bypass surgery. I had ALL of the symptoms you describe. I had diagnosed myself with MS. Having the luxury of working in a hospital lab, I was able to do my own testing and sure enough, my MMA was elevated, as was my homocysteine (another marker of B12 defficiency). My B12 level was "normal" at 214. Normal ranges are 150-900, which is absolutely crazy, because you can have irreversible neurological damage at levels below 500.

Please do yourself a favor and IMMEDIATELY start taking sublingual B12. You MUST take the METHYLCOBALOMIN form of b12 and not the more common Cyanocobalomin form. The latter is the kind you'll find at every drugstore. It's useless. You need the more bioavailable form of Methylcobalomin form to make a difference. IT CHANGED MY LIFE!

I couldn't walk a straight line, remember my kids' names. I couldn't sleep, had awful anxiety and horrible visual problems. Good luck and keep us posted.

Michael949 09-15-2012 04:35 PM

Re: B12 Deficiency?
 
kikijean, you are being totally irrational. Levels of B12 below 500 do not cause irreversible brain damage. My B12 is 250 and I don't have any brain damage. I would be curious to know how you came to that conclusion?

kikijean 09-15-2012 04:54 PM

Re: B12 Deficiency?
 
Michael....I've been researching B12 defficiency for 4 years. Google it and do a little bit of reading. It's there. Most other countries' established normal ranges for B12 is 500-2000. We are WAY out of touch on this issue. I've read medical journals and many books on the subject......and i've LIVED it.

Michael949 09-15-2012 05:37 PM

Re: B12 Deficiency?
 
[QUOTE=kikijean;5056524]Michael....I've been researching B12 defficiency for 4 years. Google it and do a little bit of reading. It's there. Most other countries' established normal ranges for B12 is 500-2000. We are WAY out of touch on this issue. I've read medical journals and many books on the subject......and i've LIVED it.[/QUOTE]

My question to you is if that was the case, why aren't there a ton of people in hospitals and neurology offices, being treated for neurological conditions brought on by B12 below 500?

If everybody who had a B12 level below 500 got these conditions, I'm sure we would have heard about it by now..We're talking about tens of millions of people in the U.S. alone

Ivebeenbetter 09-15-2012 08:31 PM

Re: B12 Deficiency?
 
[QUOTE=Michael949;5056505]Ivebeenbetter, as someone who does have mild anemia from iron deficiency, I think you are jumping to conclusions

First of all, your hemoglobin has to be low for them to diagnose you with anemia. Only then would they do a B12, folic acid, and iron serum test, to check for the cause of it. Because you're hemoglobin is normal, they can't diagnose you with anemia

However, could you have B12 deficiency without anemia? Maybe, maybe not. Get tested for that, along with iron and folic acid. I know you don't have insurance but they are not that expensive

Are you a vegetarian? Many people who have B12 deficieny do so because they don't eat enough meats, which is where you get B12 from[/QUOTE]

hi Michael949,

You must read more information on B12 deficiency, I'm hardly an expert but there are many cases of people being diagnosed with B12 deficiency due to pernicious anemia without actually being anemic...being that B12 deficiency is something that takes awhile sometimes to present with actual anemia it is commonly misdiagnosed...I can tell you I don't have anemia but I feel the effects described by many, many people who are b12 deficient ... Thank you for the reply though :)

Also no I'm not a vegetarian, I'm very much a meat eater

Ivebeenbetter 09-15-2012 08:42 PM

Re: B12 Deficiency?
 
[QUOTE=kikijean;5056511]Dear Ivebeenbetter,

You ABSOLUTELY sound like you are suffering from B12 defficiency. It is possibly to have profound B12 defficiency without anemia. I'm curious to see what the MVC on your blood count was. That's the measurement of the size of your red blood cells. B12 defficiency causes enlarged red blood cells.

I developed B12 defficiency afetr having gastric bypass surgery. I had ALL of the symptoms you describe. I had diagnosed myself with MS. Having the luxury of working in a hospital lab, I was able to do my own testing and sure enough, my MMA was elevated, as was my homocysteine (another marker of B12 defficiency). My B12 level was "normal" at 214. Normal ranges are 150-900, which is absolutely crazy, because you can have irreversible neurological damage at levels below 500.

Please do yourself a favor and IMMEDIATELY start taking sublingual B12. You MUST take the METHYLCOBALOMIN form of b12 and not the more common Cyanocobalomin form. The latter is the kind you'll find at every drugstore. It's useless. You need the more bioavailable form of Methylcobalomin form to make a difference. IT CHANGED MY LIFE!

I couldn't walk a straight line, remember my kids' names. I couldn't sleep, had awful anxiety and horrible visual problems. Good luck and keep us posted.[/QUOTE]

Kikijean,

I was looking into methylcobalamin sublinguals but I wanted to wait until I was actually tested so it wouldn't mess up the results....my MCV was normal at 84.2...so I'm gathering my cells are normal sized...I feel so ill sometimes, I just want to start treating this already :(..thank you for the reply it was very to have a sort of confirmation from an actual b12 deficient person...my sister has different symptoms than I do so it's nice to talk to someone who knows the feeling...

Will definitely keep you posted thanks :)

Heatherx5 09-15-2012 09:19 PM

Re: B12 Deficiency?
 
You don't have to have anemia to be b12 deficient. Second of all I had all your same symptoms, and still have most of them and my B12 went from 340 to over 800 in about a month. People that say only the methylcobalamin work, wrong. I took cyanocobalamin and it worked just the same; rose my numbers over 400 points in a month. I don't know what everyone is disagreeing on that is just my 2 cents. :D I would think your numbers would have to go really low and you would have to be pretty deficient for a very long time to get the permanent issues. There are labs online that you can actually get that may fit your budget better. I can't give links simple searches can point you in the right directions.

You can start taking the b12 now, and you can't OD on the stuff whatever you don't use your body will just get rid of in the urine. Have you looked into a Super B Complex type vitamin, all the B's are really good for you. Good luck!

Ivebeenbetter 09-15-2012 09:30 PM

Re: B12 Deficiency?
 
[QUOTE=Heatherx5;5056620]You don't have to have anemia to be b12 deficient. Second of all I had all your same symptoms, and still have most of them and my B12 went from 340 to over 800 in about a month. People that say only the methylcobalamin work, wrong. I took cyanocobalamin and it worked just the same; rose my numbers over 400 points in a month. I don't know what everyone is disagreeing on that is just my 2 cents. :D I would think your numbers would have to go really low and you would have to be pretty deficient for a very long time to get the permanent issues. There are labs online that you can actually get that may fit your budget better. I can't give links simple searches can point you in the right directions.

You can start taking the b12 now, and you can't OD on the stuff whatever you don't use your body will just get rid of in the urine. Have you looked into a Super B Complex type vitamin, all the B's are really good for you. Good luck![/QUOTE]

Heatherx5,

Thanks for your reply, I know some people like the Cyanocobalamin or the Hydroxycobalamin but I read the the Methylcobalamin is the purest form of the three and is very much like the b12 that exists in your body...just a preference I think....I will look into a Super B Complex vitamin thank you :)

Heatherx5 09-15-2012 09:36 PM

Re: B12 Deficiency?
 
No problem, I know what it's like to feel like crap and go into panic mode. I suffer panic attacks, anxiety, and depression. None of which I had before the anemia diagnosis and it's like a wholllle box of problems opens up. Anemia, B12, Vitamin D, Folate. Sinsus', ear issues, balance issues, the list goes on and on. I know how it feels to feel bad. I just grabbed whatever I could and started taking it, and it worked so I was pleased. The Methylcobalamin was hard to find over the counter and the only one I found was a very large dose and spendy. I wish you a speedy recovery and really do hope they find what is wrong with you.

I also wanted to add. My hematocrit and hemoglobin are both fine, but I'm still anemic. Yes technically a Dr. is gonna say no your not but my Dr. won't, I still have a ferritin of 15 and an iron count of 33, with normal hematocrit and hemoglobin, so not all Dr's are the same, I'm very sorry the Dr. you saw did not take you serious. I'm curious what your iron and ferritin numbers are. I'm still taking large doses of iron as well.

Ivebeenbetter 09-15-2012 09:53 PM

Re: B12 Deficiency?
 
As for my ferritin and iron, I don't know...Im not sure they tested me for it to be honest...what are the codenames/abbreviations?

Thank you just the same though because it helps to talk about it with someone who knows what you feel :)

Heatherx5 09-15-2012 09:59 PM

Re: B12 Deficiency?
 
Would be something like Iron Serum, Ferritin Serum. You would know. They need to be looking at more then just hemoglobin and crit.

If you ever need to talk I'm here and definitely can sympathize. I can't get out of bed w/o feeling like I'm falling over. I feel like I'm drunk all the time, and haven't drank anything. :D

Ivebeenbetter 09-15-2012 10:14 PM

Re: B12 Deficiency?
 
[QUOTE=Heatherx5;5056630]Would be something like Iron Serum, Ferritin Serum. You would know. They need to be looking at more then just hemoglobin and crit.

If you ever need to talk I'm here and definitely can sympathize. I can't get out of bed w/o feeling like I'm falling over. I feel like I'm drunk all the time, and haven't drank anything. :D[/QUOTE]

No I wasn't tested for it then...should I ask my GP next time?

I know that feeling well...thank you I appreciate it and same goes for you :)

Heatherx5 09-15-2012 10:17 PM

Re: B12 Deficiency?
 
I would have them check just to be sure. They aren't to expensive. Like I said, my hematocrit and hemoglobin are normal and I'm still suffering with low numbers.


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