standingtall wrote:Yes, I have been tested. But before I give the data, let me tell my B12 story. About 3 months after my first MS attack with all symptoms subside and just prior to diagnosis of MS I tested low on B12. I do not have that exact data, but I think it was in the 20pg/ml range. This was in the fall of 2010. The doc prescribed B12 injections for a few weeks, but the B12 did not increase. I have no recollection or data on hand about mma or hcy at that time. Post B12 injections, the doctor suggested that I begin 1mg sublingual methylcobalamin which I did. Then in the course of addressing the B12 deficiency, I got the MS diagnosis and the B12 concern sort of went out the window for the doctors. You know, the old MS patient shuffle where every disfunction or symptom is pinned to the MS diagnosis.
standingtall wrote:I continued to take the B12 supplements anyway, because I could tell a real difference in my energy level when I took them twice daily. When I missed the supplements a few times, I felt very tired and fatigued. Approximately, a year later I got another B12 check myself and the level continued to be on the low side at 82pg/ml. I then switched from the 1mg supplement to a 5mg supplement.
After making the B12 dosage change, I felt great. Best I had felt in probably 10 years. After about a year, I did another B12 recheck myself. This time the level was 3300pg/ml, I could not believe it. I dropped the dosage back to the 1mg amount, and after 3 month recheck it remained about the same. I stopped the supplementation altogether, except for a small amount I get in my multi and after 3 more months the level had dropped down to 1271. I can't afford to pay for too much blood work on my own, and the docs I had at the time wouldn't order it so I was doing this without Dr. supervision. I did not think to check mma or hcy at the time, duh? Recheck of B12 in 2013 was 1078pg/ml. During this time, when I reduced or stopped the B12 supplementation I noticed that my energy level was much reduced. This continues today.
Finally in April 2014, B12 was 781pg/ml. Homocysteine was 5.1umol and methylmalonic acid was 113nmol. I switched primary physicians this year and I think I finally found a good one, as he checked everything. Although he was not very intrigued by my B12 story.
Sorry for the long story, but I still believe I have B12 issues. I do not understand the mechanism that would cause such a deficiency in B12, preventing it from coming up with supplementation. Then only to be followed by an extended period of high B12, preventing it from coming down. Also, the physical benefits of supplementation were tangible and had to be more than coincidence. I will stop here, but feel at least for me that unraveling this mystery holds much of the key for everything I have been battling for the last four years. Maybe the B12 issue is a symptom of what else is going on with my body, but I just don't think so.
standingtall wrote:Lynda, my symptoms have been all over the place. Specifically since getting B12 up I felt good with few symptoms at all. The only thing symptom I had was spasticity. While on aubagio I discovered the unusually high b12, stopped the b12 and my symptoms have increased. There is so much going on it is hard to tell what helps and what is working against me!
My neuro switched me over to rebif, which is really working me over at the moment. One thought I can't get out of my head....what if the B12 was my issue and the aubagio impacted the liver which caused the unusually high b12? Then stopping the b12 brought about the resurgence of symptoms? Probably wishful thinking on my part, but I will find out soon as I have restarted the b12 supplement despite my last bloodwork showing it was still plenty high.
Thanks for the info NHE.
Please be aware that taking any B12 supplements at all prior to being tested could skew your results and this may cause you to remain undiagnosed. TRY NOT TO SELF TREAT before testing!
Folate and ferritin levels must be checked with B12, you may not be low in these but B12 deficient patients often are.
Diagnostic Tests - please note symptomatic children often show as within range on a serum B12 test. They may require ALL tests to establish a deficiency.
• The most common test is serum B12 - The reference range can be set as low as <110 - 900 ng/l in some parts of the UK. This is a problem as the test often misses desperately deficient people. The fact is that it tests all B12 in the blood, active and inactive; it does not record what is happening at cellular level. The body cannot access inactive B12 and this can be as much as 80% of the level in serum. There are documented problems with the accuracy of this test; however, most health professionals are not aware of this, click here to read the NEQAS B12 alert. What we really need is for doctors to understand that it is important to treat the symptomatic patient and not just rely on test results.
• Serum MMA - (methylmalonic acid) is available on the NHS and privately in the UK.
• Urinary MMA - This test is only available privately in the UK or can be ordered directly without referral from the US. Click here to learn more from Dr Eric Norman's website.
• Active B12 (HoloTc or Holotranscobalamin) - This private test can be carried out in the UK at St Thomas' with the consent of your GP or as a home test kit.
• Homocysteine - In the UK this test can be carried out privately or at your local hospital if requested by your doctor. Homocysteine is an amino acid produced by the chemical conversion of methionine. It can rise to a toxic level if levels of B12, B6, folate (B9), B2 and magnesium are low. It has been thoroughly documented that even moderately elevated homocysteine levels are a strong risk factor for cardiovascular disease, stroke, and neuro-degenerative diseases, including dementia and Alzheimer’s.
• MTHFR - methylenetetrahydrofolate reductase (gene mutation)
The following tests are used to determine the reason for a B12 deficiency, one of the causes of B12 deficiency is Autoimmune Pernicious Anaemia.
• Gastric Intrinsic Factor Antibodies.
• Gastric Parietal Cell Antibodies.
• If you are B12 deficient it is essential to have your folate (vitamin B9) and ferritin levels (iron storage) monitored in order to make sure you optimise your healing. Your doctor may not be aware of this!
• Your MCV level (mean corpuscular volume) which is tested as part of full blood count will also be key in determining macrocytosis - (large red blood cells). Please note absence of high MCV does not exclude B12 deficiency. Click here for more information.
Adding B12, folate and ferritin tests to a 'full blood count' would help doctors to diagnose a B12 deficiency much earlier than at present.
The unreliability of the serum B12 test
Read an extract on the unreliability of the serum B12 test from an NIHS (Irish National Institute of Health Sciences) Bulletin February 2013. Co authored by Margaret Harty PHN, RGN, RM and Dr Joseph Chandy.
In Ireland, a diagnosis of vitamin B12 deficiency is typically contingent on the results of a total serum B12 test. However, emerging evidence indicates that the total serum B12 assay is inaccurate¹ and that total serum B12 is an insensitive and unspecific biomarker for B12 deficiency² suggesting that B12 deficiency may be considerably under diagnosed in Ireland.
There are no up-to-date national guidelines for the diagnosis and treatment of B12 deficiency, and no single test to definitively identify it. Consequently, the exact prevalence of B12 deficiency in the general population is not known. Interpretation of the threshold of total B12 for treating deficiency is controversial and this is probably the crucial issue. It is likely that general population screening using some diagnostic test will be cost effective sometime in the future. In the meantime, patients are likely to continue to manifest symptoms of B12 deficiency, in the absence of ‘abnormal’ serum total B12.
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