loislamey wrote:My last blood tests showed I was borderline for b12, I've been taking supplements ever since. This blood test was a good few months before I started the tec though. I'll be seeing my nurse in December at some stage, to go over the results of my last test before getting Lemtrada in January.
I might just ask her can I stop this treatment, I can't see any real reason to keep taking it when I'm already lined up for something else. I'll definitely be calling my GP on Monday to talk about it. He seems scared of talking to me about the MS and the drugs I'm on, but he's really sweet and will go out of his way to find things out for me.
I've tried eating a full meal, a small meal, not eating anything at all before taking the tec, but still, a few hours after I take a dose, I am in so much pain around the bottom of my ribcage that I need to step outside of work for about half an hour. It's seriously disruptive! Thanks for the replies guys x
Borderline for B12? Many researchers think that the reference ranges for B-12 are set too low at US labs. The following authors recommend that B12 levels should be greater than 550 pg/mL; in Japan, levels below 500 pg/mL are considered to be deficient and are treated.
I urge you to read the book,
Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.):
http://b12awareness.org/could-it-be-b12 ... diagnoses/
On page 11:
There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).
… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.
At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…
We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.
Compare your B12 test results to those recommended by the authors.
Your B12 supplements… Are these sublingual (under the tongue) tablets? Are these of the cyanocobalamin or methylcobalamin form? (The cyano form is not easily absorbed by the body; it must be decyanated first.)
In your place, I would also probably ask the doctor about stopping treatment with Tecfidera – especially if you don't see any real reason to continue it. (By the way, there are many medications that deplete vitamin B12 levels – I don't know if Tecfidera is one of them, but there may be a good reason for testing B12 there. Since you seem to have found a good, cooperative GP, ask if he will order a serum homocysteine test and a methylmalonic acid test. These are not expensive or unusual tests; a high Hcy and a high MMA indicate that B12 level is low – in fact, the serum homocysteine test is becoming very common for assessing the risk of heart disease… not that this is your problem.)
Let us know how talking with your GP goes on Monday. (And if your nurse in December agrees to stopping Tecfidera. You want to feel good for the holidays, and maybe stopping Tecfidera will make that possible.)