Vit B12 Concern

pabb · 03-16-2009, 09:14 AM

Quote:

Originally Posted by Jay1980

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

the Vit D that your doc gave you would be D2 not the best, check your bottle of OTC, if it is D3 that is the one likely to be better for you.....a little more research for you to do,lol.....D2 is erogcalciferol, D3 is cholecalciferol.

daniella · 03-16-2009, 12:29 PM

I can understand never knowing the why behind all this. I am 30 now but this started at 28. I have a long history of anorexia but they don't seem to see connections to all my conditions. Who knows though. I have been to every specialty and still I get that ? look from them. I am not sure if you have been to a rheumatolgist/endo but I would if I were you with the d concerns so on and for sure follow up on the celiac. If that came back positive that may really help you just by changing your diet with your symptoms. I know just like the other poster said some people just do that diet and find results. What about diabetes too or maybe you stated this. Sorry I am going on 2 hour a night sleep for the last week. Many thoughts

COLBEYMOORE · 03-19-2009, 04:33 AM

Wow by Vitamin B12 lab result was 245 and my doctor said that was fine and that it is in the "normal limits".

Hmm I am concerned now is 245 low for people with neuropathy...I wonder with him being a "specialist" why he wouldnt have know what everyone says here. In any event I went to CVS and bought myself a bottle of vitamin B12 tablets..I didint know which dosage to get so I started on the 250mg and took 2 before I went to bed.

Any suggestions

mrsD · 03-19-2009, 06:24 AM

Quote:

Originally Posted by COLBEYMOORE

Wow by Vitamin B12 lab result was 245 and my doctor said that was fine and that it is in the "normal limits".

Hmm I am concerned now is 245 low for people with neuropathy...I wonder with him being a "specialist" why he wouldnt have know what everyone says here. In any event I went to CVS and bought myself a bottle of vitamin B12 tablets..I didint know which dosage to get so I started on the 250mg and took 2 before I went to bed.

Any suggestions

Are they timed release? If so I don't think they will work well.
500mcg is the lowest dose recommended..very borderline.

I'd take 4 to start (1mg) on an empty stomach. I assume they are cyanocobalamin?

The methylcobalamin is not commonly available in stores but you can find it here:

http://www.iherb.com/Search.aspx?kw=methylcobalamin
The Jarrow brand is good, and very inexpensive.

245 is too low.
Here is a site to read: (they use 400 as a cut off)
Japan uses 500 as a cut off value:
http://www.aafp.org/afp/20030301/979.html

Much of the problem is the lab reporting. Doctors rarely question labs...and the ranges in US are low. Your doctor is just typical. You can print out the AAFP article and take it to him! Doctors have therapeutic books that they use for a guide, and it takes eons for them to be republished with new
articles (they are very expensive too). Unless a drug salesman tells them stuff, many doctors do not look for information themselves! States force CME education for relicensure, but if this topic is not offered, then no dice! Even Dr. Latov's book has two huge typo errors about B12 in it! Sad but true!

If people are low in B12 one has to assume that normal absorption from food is impaired/broken, and then you have to rely on "passive" absorption which requires very high oral doses.

COLBEYMOORE · 03-25-2009, 11:24 AM

Mrs D

I purchased the CVS brand B-12 250mg. I have had to wean myself off of neurontin I was told I was at a dangerous dose (greater than 4800mg in a day) and was having "strange thoughts" so I immediately cut back. I added the B-12 for fear expecting the pain to increase but to my surprise (knock on wood) it hasnt been that bad.
I dont know if it was the CVS brand of B-12 or what I am just thankful the pain is not what it was. I am going to purchase the brand everyone here is taking. I see my endo on the 31st and going to ask her to draw a B-12 level on me just to see where it is now. Was 245 back in August 08 was last test date
Thanks

cindyd · 04-25-2009, 08:31 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

Hi Jason, your doctors first mistake was to stop your injections. I too suffered from B12 deficiency. I had very bad pain pop up in places that I didnt even know had a problem. Neck, upper back, shoulders, hip. I have always been a very active person physically. Put me down big time. You need to follow the advise on the Jarrows MethylB12. No one told you about the other active form of B12. AdenosylB12. It is also needed for healing. Here are a few more needed for maxium healing effects. Megafolonic 800. B-Complex with the MethylB12 in it. I can give you brand names for the complex and Megafolonic that people here have used with success. I was misdiagnosed for quite some time and pain was pretty intense. Also was in ER a few times. B12 deficiency causes degeneration of the spine and the mylen sheath to deteriorate, causing nerve probs. I had the burning pain you describe in middle of my back to the right of my spine. It just happens that I have 2 vertebrae that are slightly turned. (Never knew it because it never hurt before I got sick) Felt like it was on fire there. Ice helped temp. Healing is the only way it went away. Muscles in shoulders, upperback and neck ended up in a mess of knots. Took years to undo. It did get better tho. Follow the advise and keep us posted. TTYL

ConsiderThis · 04-26-2009, 12:25 PM

Quote:

Originally Posted by COLBEYMOORE

Mrs D

I purchased the CVS brand B-12 250mg. I have had to wean myself off of neurontin I was told I was at a dangerous dose (greater than 4800mg in a day) and was having "strange thoughts" so I immediately cut back. I added the B-12 for fear expecting the pain to increase but to my surprise (knock on wood) it hasnt been that bad.
I dont know if it was the CVS brand of B-12 or what I am just thankful the pain is not what it was. I am going to purchase the brand everyone here is taking. I see my endo on the 31st and going to ask her to draw a B-12 level on me just to see where it is now. Was 245 back in August 08 was last test date
Thanks

I'm really amazed that they have a brand offering 250 mg of B12... so many are 250 or 500 mcg, which is minuscule.

I wish it came in 25 mg, that would be so good for me, since I try to use as much as my doctor had prescribed when she prescribed a B12 shot a day for a year, which is about the same as 6 of the 5mg lozenges of methylcobalamin a day... over a month that equals about a shot a day.

Also, the cyanocobalamin has to be changed into methylcobalamin by your body, so it isn't as fully useful as methylcobalamin used to start.

The problem with the very low limits being used to show vitamin B12 levels to be "normal" is very worrying to me. I think it must be done in support of drugs which are used to treat the symptoms of low B12 ... drugs which are a tad

more costly than B12.

ConsiderThis · 04-26-2009, 12:31 PM

Quote:

Originally Posted by cindyd

Hi Jason, your doctors first mistake was to stop your injections. I too suffered from B12 deficiency. I had very bad pain pop up in places that I didnt even know had a problem. Neck, upper back, shoulders, hip. I have always been a very active person physically. Put me down big time. You need to follow the advise on the Jarrows MethylB12. No one told you about the other active form of B12. AdenosylB12. It is also needed for healing. Here are a few more needed for maxium healing effects. Megafolonic 800. B-Complex with the MethylB12 in it. I can give you brand names for the complex and Megafolonic that people here have used with success. I was misdiagnosed for quite some time and pain was pretty intense. Also was in ER a few times. B12 deficiency causes degeneration of the spine and the mylen sheath to deteriorate, causing nerve probs. I had the burning pain you describe in middle of my back to the right of my spine. It just happens that I have 2 vertebrae that are slightly turned. (Never knew it because it never hurt before I got sick) Felt like it was on fire there. Ice helped temp. Healing is the only way it went away. Muscles in shoulders, upperback and neck ended up in a mess of knots. Took years to undo. It did get better tho. Follow the advise and keep us posted. TTYL

That was a very interesting read. I'm unfamiliar with Megafolonic. I used to use Adenosyl... but went to using only the methylcobalamin as it gave me excellent results. I use the Source Naturals and have always been highly satisfied. I tried the Jarrow but one of the first bottles I had contained a lozenge that had a "pebble" of something or the other in it... so I wasn't as starry eyed about Jarrow after that.

Thanks so much for sharing your experience. I too have found that being sick seems to up the amount of discomfort from things that up until then weren't painful...

jezbel · 04-30-2009, 12:44 AM

For colbymoore...... Several years ago I suffered from a type of nerve pain called meralgia paresthetica. Basically a branch of nerves were sending pain signals to my brain but there wasn't really an injury. (oversimplified) but I wound up taking about 3000 units of neurontin daily in three separate doses. While it dulled some of the pain over the course of a year or two, ultimately it was ineffective. I needed to stop taking so much and I wound down too quickly. My doctor never told me to wean myself off of it VERY slowly. As a result I went from 3000 a day to none in about 10 days. BIG MISTAKE. I was nauseous constantly, I had a panic attack (which I've never experienced before or since) my heart was racing, my thoughts were racing, I was jumpy and felt the adrenaline non-stop for two days till I could get in to see my famiy doctor. Neurologist was not picking up over the weekend. Family doc had to prescribe Ativan to stop the racing thoughts. I wound up going to a shrink because I thought I was going crazy. She discovered that I had discontinued Nuerontin too quickly and put me back on (which stopped the symptoms) until I SLOWLY, over three months, titrated down to zero.
Just a word of caution. Hope you're doing well.

jezbel · 04-30-2009, 12:52 AM

Jay1980, I understand your pain. B-12 can only help. I've only ever had the cyan version but I shoot myself and have for 10 years now. I find it very helpful in coping with with nerve pain. I probably don't do it often enough. But I notice you said you were mostly a "meat" kind of guy, for meals that is. Vitamin B-12 and it's little friends are contained in green leafy vegetables (and others) and we're really not able to store it in great quantities. So, adding some veggies to your diet can't hurt. Have some more salad and some broccoli in addition to your daily B-12. 'Just a thought.

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