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- CommentAuthorteresa
- CommentTimeApr 25th 2009
Anyone have low levels of B12 with their autoimmune disease? -
- CommentAuthorvlwood
- CommentTimeApr 26th 2009 edited
Yes. As you may know, if the cause of B12 deficiency is autoimmune, it's called pernicious anemia. I don't know whether mine was autoimmune or not, but I did have low B12, probably for years. Despite the symptoms, no doctor ever checked my B12. I had to figure it out for myself. Glad to see yours is being taken care of. If you want lots of great info about B12 deficiency, get the book "Could it Be B12?" by Stuart and Sally Pacholok. It's excellent! -
- CommentAuthorteresa
- CommentTimeApr 26th 2009
Thank you for sharing your experience and the book recommendation. It is my daughter who just started the B-12 injections. She still doesn't have an autoimmune diagnosis after 7 years of symptoms, but she is about to have another workup at the rheumatologist. Her internist is also presently checking her Vitamin D level. One thing that seems to have the doctors puzzled is that her B-12 is low, yet her MMA is NOT high. I hope she gets answers soon. I was just diagnosed with MCTD on Friday as a result of my yearly physical and subsequent referral to a rheumatologist. I wish her path to a diagnosis could have been as easy. :( -
- CommentAuthorvlwood
- CommentTimeApr 26th 2009 edited
The Pacholoks' book explains why sometimes you have to get a urinary MMA test, not just the blood test. As of the last I knew, only two places provide the urinary test. One is the Mayo Clinic. The other is Norman Labs, which is run by the person who invented the test.
But if your daughter is already getting B12 injections (or taking B12), that would change the test result anyway. -
- CommentAuthoruni
- CommentTimeApr 26th 2009
I have problems with B12. I have an autoimmune disease but it is not pernicious anemia. I have primary biliary cirrhosis which is a disease in which the immune system attacks the bile ducts in the liver. The medication used to treat the disease breaks up bile. Bile is needed to digest fat and that it turn affects the fat soluble vitamins of which one is B12 - thus the B12 problem. It took 7 years to diagnose the B12 part of the disease. I do not get the B12 injection, but instead take a daily 1000mcg tablet which I have read is equally effective. I had to start on 2000mcg for 2 weeks then switched to the 1000meg. Most of my symptoms (primarily neurological) have disappeared with the pills. -
- CommentAuthorvlwood
- CommentTimeApr 26th 2009 edited
Uni, that's really interesting to me, because I've suspected that I might have PBC, although tests haven't shown it. Also, I've found a couple of online medical journal articles describing patients who had both PBC and pernicious anemia, but neither article explained how PBC would cause a vitamin deficiency. Of course it wouldn't be surprising to have both diseases, since they're both autoimmune, but your situation is still different.
How did you ever find a doctor who figured out what was going on?
Do you take the bear bile (urso---something)? Or what med are they using? -
- CommentAuthoruni
- CommentTimeApr 27th 2009
My PBC was discovered because I had an elevated alk phos (which is a liver enzyme). My internist then did AMA (antimitochondrial antibody test) which is specific for PBC and was positive. About 95 % of people with PBC have a positive AMA. There is a lot of info about the disease at PBCers.org. I take Ursodiol which is a generic form of bear bile. The standard treatment is URSO, but it gives me diarrhea, so I take the generic.
I began to have neuro symptoms and literally went from doctor to doctor. I ended up at Shands at the University of Florida. I got some good treatment and some brush off - including the standard - you need counseling. The problem was that my symptoms were intermittent so the testing varied and I never had all the symptoms of anything - just bits and pieces. So I got mad and wrote a 4 page letter to the director of Shands Medical Center (I looked up his name) and sent copies to the Chief of Medicine and the Head of the Clinics and listed all the positive findings on the testing and detailed the run-around. The head of the department of neurology called and said literally, "How have we failed you?" So I told him I felt my brain was turning into swiss cheese and was very scared. He agreed to see me and spent almost 2 hours with me and gave me 3 possible diagnoses. He recommended a blood test for both B12 and Methylmalmonic Acid. B12 breaks up the MMA so the B12 can be low normal (like mine and not recognized as a problem as mine hadn't been) but if the MMA is elevated it means the B12 is not being properly utilized - at that is my specific problem. So I take the B12.
I have finally gotten the doctors to check the other fat soluble vitamins and should get the results next week.
Basically what it boils down to is doing research, finding the best place near you, and not giving up.
What makes you think you have PBC?
By the way, I was diagnosed back in 1992. -
- CommentAuthorvlwood
- CommentTimeApr 29th 2009
The way you dealt with those docs is just fantastic! I wish I had done something like that years ago.
You don't have to tell me to do research. By necessity, that has been a main focus of my life for several years. And you don't have to tell me about finding the best place near me, although the nearest useful place wasn't so near. It was over 1,000 miles round trip drive, but well worth the trouble to finally get a diagnosis.
Since you asked about the PBC, I don't know for sure, but now that I know I have autoimmune diseases (two diagnosed so far), I always consider autoimmunity as a possible cause for any strange symptoms. Last year, just after getting over the flu, I went through about 6 weeks of bad G.I. pain. Various medical tests did not explain it. Finally I tried taking high-dose B-12, and most of the pain disappeared in a couple of days. The one finding from all the tests was biliary dyskinesia. Now, a year later, some mild chronic pain continues on the lower right ab. and also on the right side and around to the back.
I felt that maybe the flu triggered the immune system, leading to an autoimmune flareup that might have caused inflammation of the bile ducts, which might (from my reading) narrow the ducts and cause a back-up of bile. Also from my reading, bile in the wrong places can be painful.
I ordered myself a couple of tests for autoantibodies for pernicious anemia and one test for PBC. They were not positive, so I still don't know.
Right now I'm focusing most on finding a treatment for renal artery stenosis, another actual diagnosis that I've received, dangerous especially because it drives up the blood pressure. The doctor insists it has to be caused by atherosclerosis, but my reading tells me it could be autoimmune inflammation. Either way, I don't like the standard treatments and am looking for alternatives.
Thanks for asking.
Comments will be welcome. -
- CommentAuthoruni
- CommentTimeApr 30th 2009
Generally the only abdominal pain I have heard of with PBC (and it is fairly rare) is upper right and is believe to be from the enlargement of the liver capsule. The most common symptoms that bring people to the doctor are severe fatigue (unrelated to being tired and very different - feels like you have cement in your veins or like a bad case of the flu without the fever), itching, dry mouth, bone and joint pain. Most are surprised to find out they have a liver disease.
Have you considered gall bladder disease? I thought of that when you mentioned the back pain. -
- CommentAuthorvlwood
- CommentTimeMay 1st 2009
Oops, I think I should have said upper right. It's below the waistline, near the hipbone.
Thanks, yes, I do seem to have some kind of gall bladder disease. The main reason I considered PBC was that PBC is autoimmune and involves the bile. I had thought that meant it would involve the gall bladder, too. I even ordered myself an AMA test from an online company. It was negative.
The local doctors had wanted to remove my gall bladder due to the pain and their finding of "biliary dyskinesia," which they said means that the gall bladder doesn't squeeze the bile out as well as it should. As far as I've been able to find out, no one seems to have an explanation as to why that happens. The doctors also never explained why that would cause pain.
Actually they don't seem to know much about the gall bladder. If it isn't working right, they remove it, and then it doesn't work at all.
To me, removing any body parts would be a last resort to be done only if the pain gets bad again.
So yes, I do seem to have some kind of gall bladder disease. Maybe that led to a B12 deficiency the same way your PBC did.
Let us know how your other vitamin levels turn out. -
- CommentAuthoruni
- CommentTimeMay 2nd 2009
My other labs are normal.
The gall bladder stores bile and if it becomes blocked - usually by gallstones, the bile is trapped and that causes the pain. If the gallbladder is removed, the bile is no longer trapped and no more pain.
In PBC it is the bile ducts in the liver that are affected. -
- CommentAuthorvlwood
- CommentTimeMay 2nd 2009
Thanks. It's good that your other labs are OK.
I did get a doctor to check me for gallstones. (You'd think they'd have thought of that themselves.) Didn't find any, so maybe the problem was/is just the biliary dyskinesia, or maybe there was some blockage that they didn't find. I don't know whether dyskinesia could cause that much pain. Actually I think I may be getting better, even though I've had some pain for over a year now. If it continues, I'll probably ask my doctor whether the sluggish gall bladder could have caused the apparent B12 deficiency, because of B12 being fat-soluble, and I'll ask about trying some ursodiol. I'm glad you posted that. -
- CommentAuthorRosewood513
- CommentTimeMay 8th 2009
I have autoimmune and have normal B12 numbers. Pernicious anemia is a low level of B12, not everyone has low B12 with autoimmune diseases.
"Yes. As you may know, if it's autoimmune, it's pernicious anemia."
I do not believe this statement is true, my dr. told me I am fine is that area. I am a vegetarian and am very careful of my nutrition. -
- CommentAuthorvlwood
- CommentTimeMay 8th 2009
I certainly did not say, nor would I ever say, that everyone with an autoimmune disease has pernicious anemia. -
- CommentAuthorkitINstLOUIS
- CommentTimeAug 8th 2009
In discussing pernicious anemia, it might be helpful if we posted our test result numbers. Optimal levels are around 800, yet the normal lab range on the test says you're okay as long as you aren't under 200. Not true! I'm here to tell you that I recovered very well from multiple neuro symptoms (depression, anxiety, psychosis, peripheral neuropathy, back spasms, weird sensations on my skin, etc.) when I treated my low B12 (250) with sublingual methylcobalamin. It was like night and day, and I'm so grateful to have autoimmune diseases that are treatable (celiac disease, Graves' disease, Hashimoto's disease, pernicious anemia). -
- CommentAuthorjonn
- CommentTimeAug 8th 2009
Hi
I have normal low values but have symptoms of B12 deficiency. My low is between 200-400. I take an injection every week. Does anyone have symptoms with normal lows? -
- CommentAuthorkitINstLOUIS
- CommentTimeAug 8th 2009
Hi Jonn,
Yes, my B12 was at 250, as I posted above. As soon as I started my sublingual methylcoblalimin (B12) I got immediate relief with anxiety, paranoid thoughts, and felt energized. Weeks afterward I felt some strange tingling, which I've been told indicates nerve healing. Now, my tremor is gone (I can draw again, able to control my line values), I no longer have trouble walking steady. I was totally unable to exercise before because I'd get debillitating back and shoulder spasms, so became so weak I couldn't even open a jar on my own. Now I'm working out with dumbbells, doing ab exercises and look and feel better than I have in ten years. I wish I'd done more research on my lab values when I got my first ones a year ago. I was told to take B12 supplements, which I did, but I was taking the wrong kind. Regular B12 won't break down proplerly, I'm assuming I have pernicious anemia although haven't been tested for intrinsic factor (I'm not insurable). Many people say you need a level of 800 on your B12 test to be at and ideal functioning level.
kitINstLOUIS -
- CommentAuthorkikin013
- CommentTimeAug 28th 2009
For anyone who is taking Vitamin B12 injections have you lost weight? Just curious b/c I have been searching online for weight loss programs and injections of vitamin B12 with or without amino acids has come up as weight loss injections. Want to know some feed back...thanks -
- CommentAuthorMotherof5
- CommentTimeAug 31st 2009
I have NOT read all the other comments but here's my two cents worth.
I believe that B-12 is linked to Celiacs ( another autoimmune disease) way before it would be diagnosed as TRUE Pernicious Anemia. I started out on B-12 injections and just couldn't do that anymore ( NO WAY IT HURTS!!) and so went to the health food store and found a sublingual. In 2 months my numbers went from in the 30's tot he 800's.
NOW one has to look at several different things here. I was getting off gluten/wheat and ALL grains in the transition process from low B-12 to high B-12 levels. COULD the healing of the upper intestinal tract have allowed me to absorb the B-12 better from the healthy nutrient dense food I was eating or did the sublingual really help?
I am seeing a new doctor: www.restorativeendocrinology.com Dr. Doris and she said you can have GREAT numbers for B-12 on a blood test but that does not mean the B-12 is actually getting in to the cells. So at my next visit with her we are going to discuss this further. I have had recent blood work, mineral testing from my nails ( since I have no hair) and an in-depth Adrenal test ( saliva not blood).
I do NOT bleieve my Naturopath was correct in diagnosing me with Pernicious Anemia when she did no further testing..I simply had a low B-12 level on one test. When the reason WHY I was low in B-12 was because of Celiacs ( I'm assuming I have that, not getting a biopsy to prove it.)..Celiacs, as you may or may not know, doesn't allow you to absorb nutrients from your food because the VILLI in the upper intestinal tract are lying down flat. EVEN one day without wheat/gluten/grains begins the healing process.
Now I'll go back and read the other posts lol.
Eat well, live well, be well. -
- CommentAuthorMotherof5
- CommentTimeAug 31st 2009
kikin013
Please check out Dr. Joel Fuhrman for weight loss and longevity. He teaches you how to eat right. FOOD is everything...we put it in our bodies 4-5-6 times a day.
I'm now 175 from 260 3 years ago. But the recent weight loss, about 25 piunds in the last 2 months has been because I have started to educate myself on the facts about food. The food pyramid will have us all dead by the time we are 60 if we eat that way. I know the FDA and government agencies have put that out there to help us. NOT TRUE> I just do not believe it after all I have researched. Google him and begin a new life. -
- CommentAuthorLibrarian35
- CommentTimeSep 8th 2009
I'd like to add my experiences to your own. I was diagnosed with Undifferentiated Connective Tissue Disease 2 years ago and have been treated with the usual Prednisone, Methotrexate, Plaquenil and Imuran, among others. The Plaquenil and Imuran do seem to keep flare ups to a minimum with Prednisone when one occurs. I had virtually no energy for the first year and a half, feeling completely drained after every small activity. Water exercises in a heated pool for the past 3 months have definitely strengthened my muscles and helped the painful joints, but what seems to have had the greatest effect of restoring "normal" energy levels is the sub-lingual dose of B-12 my primary care physician suggested I begin to take about 6 weeks ago. In a couple of weeks I felt like one of those cartoon characters who is knocked flat and then suddenly springs to his feet ready to go again. I never put much stock in the energy-restoring ability of B-12 supplements or shots, but the change has been so sudden and dramatic that I've become a believer now. -
- CommentAuthorMotherof5
- CommentTimeSep 8th 2009
When you are deficient is something...it creates a domino effect in your body. So when you replace what is missing you find a whole new lease on life. Those that are "missing" several things..like I had been..low iron, low b-12, gluten issues, low thyroid...over time..working on each issue helped the WHOLE ME.
Librarian I am very happy for you!
Many times a diet lacking in sufficient amounts of nutrients triggers autoimmune illnesses. -
- CommentAuthorwishiwashealthy
- CommentTimeSep 13th 2009
Definition:
Autoimmune caused Low B12 levels - Auto-Antibodies attack the Gastric Parietal Cells (in the stomach lining)
The Gastric Parietal Cells are unable to function and absorb B12 from food ingested.
Result declining levels of B12...then go on to suffer Pernicious Anemia.
Solution: Sublingual B12 1000mcg one per day
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