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    Old 11-07-2008, 03:20 PM   #1
    talshi
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    B12 deficiency: Methylcobalamin injections info needed

    Hi,

    I am a 28 year-old female, who's been struggling with a B12 deficiency and some very obtuse doctors for over a year now (though I suspect my deficiency dates back at least to 2001).

    Though I am tempted to write much more, I am writing with a very specific question. I have finally been able to convince a doctor to give me methylcobalamin injections. However, since he's never administered them before--and in fact, had never heard of them--he is reluctant to prescribe them without a) scholarly evidence that they have been used on people safely; b) dosage recommendation.

    I am particularly interested in dosage information: if any of you are getting methylcobalamin injections, could you please post your dosage/frequency? I know that different people need different doses, but it would be good to have some basic knowledge to start with. Also, if you have any scientific references for these doses or the use of methylcobalamin injections in general, that would be very useful as well. I have been able to find some articles documenting the use of high doses methylcobalamin injections, but not specifically for B12 deficiency.

    I apologize if this is duplicating anything already on the board. Rainbows End: I did find your post from October 1st, where you reported you were getting methylcobalamin injections of 10,000mcg 3 x a week for 3 months and were then planning on going down. Do you know what your doctor was basing his treatment on? Have the injections been helping you?

    Like many of us, I have spent a lot of time researching online--despite the sometimes unbearable fuzziness--and I am always grateful for people who are able and willing to share their stories, knowledge and support. Thanks to all who take the time to read and/or reply to this.

    Feel well!

     
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    Old 11-08-2008, 05:36 AM   #2
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    Re: B12 deficiency: Methylcobalamin injections info needed

    hi talshi

    are you currently getting cyanocabalamin injections???just wondering if you are and if they are not helping you.what is your B12 level???is your dr. a hematologist?yes that is correct about RainbowsEnd dosage of methylcobalamin injections,but she has left the boards to spend more time with her family,so it's unfortunate that she's not available to answer your questions.most drs. use cyanocabalamin,but I have heard that methylcobalamin is much better too.

    Sorry I couldn't help with the info you're looking for.

    Scout~

     
    Old 11-08-2008, 09:38 AM   #3
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    Re: B12 deficiency: Methylcobalamin injections info needed

    Hi Scout,

    Thanks for your reply, and sorry for not providing more background—I was trying to keep it (relatively) short. Some background, then:

    A year ago, when my left foot started buzzing, I was constantly dizzy, I became nearsighted in my right eye, and a whole lot of other things happened, my B-12 level was at 367 pg/ml. I had to beg 3 different doctors to test my levels (one actually told me they were normal, and then it turned out she hadn’t even checked them), so by the time it was checked, I was already on sublinguals. Since the neurologist—the same one who lied about checking my B12—decided 367 wasn’t low, I checked my uMMA independently, and it came back at 3.7 μg MM/mg creatinine (3.8 is the actual cut-off, but the lab assured me there was no reason a non-vegetarian should have such high levels, except for a B12 deficiency). I later remembered that while I was traveling in Australia in 2001, a doctor checked my B12 after a bout of dizziness and fatigue, and it was in the same range back then.

    I live in NY, but due to life circumstances, I had to spend some time in Israel a few months after this whole B12 thing started. Though the doctors in the US wouldn’t diagnose me with a deficiency and didn’t think I needed shots, my doctor in Israel gave me a loading dose of cyanocobalamin, though still not quite what the literature suggests (I got eight 1,000mcg shots over a period of four months--so on average, once in two weeks). In retrospect, I can say that the shots helped, but not in a “I got a shot and I feel better now” sort of way. In fact, and I’ve never heard other people say this, I feel quite awful for the 1-2 days after a cyanocobalamin shot—very very tired, achy, and such. It may be the preservatives. Or the cyanide...

    In any event, with the diffuse pattern of symptoms that I have—the buzzing, twitches, spasms, tinnitus, IBS, RLS, weakness, extreme fuzziness, etc.—in the sense that I experience some of these every day, it’s hard to decide when you feel better. So while I may not have noticed a gradual improvement, I did notice a gradual return, when after those 8 loading shots—with B12 levels of 990 pg/ml and uMMA of 1.3—my doctor decided I could switch to sublinguals. After two months on SL 3,500mcg methylcobalamin, I felt my symptoms worsen (which is how I realized I was actually feeling better with the shots), and it turned out my B12 levels were dropping—they had dropped to 600pg/ml, despite the daily subliguals.

    And then, last July, I returned to the US. Since then I’ve been struggling with doctors who don’t think I have a problem. So far, I’ve seen a neurologist—no sign of MS—several GPs, and a gastroenterologist. I had an upper GI endoscopy that showed gastritis, but the biopsies didn’t show anything the doctor thought was pernicious anemia. However, the GE is at least willing to listen to me—though he may, like the neurologist, suspect that I am crazy—and has given me 2 cyanocobalamin shots so far. This means I’ve gotten one about every two months. I’m also taking daily SL 5,000mcg methylcobalamin, though past experience has shown these don’t really keep my levels high.

    My sense—from the way my body feels and from everything that I’ve read—is that I need to get my levels high enough (most say above 1,000pg/ml), and then keep them there, for actual improvement to come about. All I’ve been doing in the meantime is bring them up a bit and down a bit, and I still feel awful. The good news is that the GE’s willing to prescribe me methylcobalamin shots, but like I said in my previous post, he doesn’t know much about it. It’s a bit scary to decide how much to prescribe yourself, which is why I posted my question.

    Anyway, I’m not sure whether this made it clearer, or more complicated. Thanks for those who take the time to read this long story, and I’m grateful for any advice you might have.

    Talshi

    Last edited by talshi; 11-08-2008 at 09:39 AM.

     
    Old 11-08-2008, 12:27 PM   #4
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    Re: B12 deficiency: Methylcobalamin injections info needed

    Talshi, out of curiosity...what is your ferritin? I have exact same symptoms as you...except i suffer from insomnia, muscle twitches, shakiness, lighteheadedness, and the foggi brain.

    My b12 was a 311 and my doc said this wasn't low. He said this wasnt causing my probs. I started (on my own) to take 2000 mg b12 a day. Havent had it checked since the 311. But my iron was also extremely low...ferritin of 1. Was still feeling awful when it was 16, and that was the last I had it checked. After four months taking iron, b12, multi, magnesium, and others, I started to feel SO MUCH better..noticeably better. Then I got a period and have been feeling awful for three or four weeks again. So I dont know which is down again...but I too have been to sleep study, eeg, mri, among others...

    My neck and shoulders feel tense...and my husband is starting to doubt me. It seems as though I am always sick and forgetful and never have nergy to do anything with him.

    Anyway, hope you can get some shots if thats what you need or want. i am seeing a new gyne to talk about the extremely heavy periods and anemias.

     
    Old 11-08-2008, 01:25 PM   #5
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    Re: B12 deficiency: Methylcobalamin injections info needed

    hi Steph...I just want to chime in here if I may....I was DX with a hidden B12 deficiency in March 2000...back them my B12 was 278(normal 200-1100) and an MMA of 415(normal 90-279)...so I had cyanocabalamin injections(1,000 mcg) once a month...I had the radioactive schilling test and that came out showing I do absorb B12...so I have intrinsic factor.After over a year of shots my hematologist said I should have at least 3-4 shots a year or I'd get deficient again.I went 5 years without shots(never feeling good that whole time,but didn't have insurance).Then all my symptoms came back(Worse than before!)so it was Hell trying to get my new drs. to give me B12 shots again....my B12 got down to 222 and finally a university neurologist DX my B12 deficiency again!

    I started getting shots again in Feb.'07 and my Ferritin was at 11...I just had my B12 checked last month and it was 420 and my Ferritin was 84...so I definitely think low B12 can mean low Ferritin also.I have just started to feel better....so I know it takes a long time to get your health back once you've gotten so deficient.Even though your B12 numbers might "seem" to be getting better it takes quite a while to repair all the neurological damage.Also my old hematologist(she retired so that is why I had a rough time of getting any new drs. to understand my case)said that it takes 3-5 years to become deficient again...and she was so right,because after 5 yrs. of no shots I became plagued with every symptom Again!

    hi Talshi!

    Thank you for sharing your B12 story...I know it's really frustrating to go through all the problems with the drs. not being educated about how to treat a B12 deficiency.At least you found a dr. who is willing to help you...that is so good to hear!My dr. uses cyanocabalamin injections and I feel the same way you do about them...I feel extremely tired for a few days,but then after that I feel okay...but not great!I feel a lot stronger physically now,but it took a long time....the only symptoms that went away fast were the pins'n needles in my hands/feet and the heart palpitations.

    What I was thinking was the people who have pernicious anemia only get one shot per month of 1,000 mcg so I feel like I'm okay with getting the same amount.I know intramuscular B12 injections is the only way to really get the best benefits of healing the damage that ws caused,but I agree with you on wondering if the cyanide that converts the B12 is what's makes you feel sick after the shot...I'd rather have methylcobalamin,but most drs. don't use that kind.I think the best thing would be to replace the same dose of cyanocabalamin(1,000 mcg) with the same dose of methylcobalamin and see how that works for you.

    I'll try researching it and maybe I can ask my dr. if the dosage of methylcobalamin is equivalent to cyanocabalamin......but as far as how much you need I think a hematologist would know best about that so I see why your GE dr. is unsure how much to give you,but it'd be great if they did a recheck of your MMA.homocysteine,folic acid,B12 and ferritin levels so that youcould have a base line to start with.

    Please post back....take care`Scout

     
    Old 11-08-2008, 02:06 PM   #6
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    Re: B12 deficiency: Methylcobalamin injections info needed

    Hi Steph,

    My Ferritin was only checked once, with my initial 367pg/ml B12, and it was 42 (range: 10-154 ng/mL). My Iron, Total was 178 (range: 40-175 mcg/dL). I assumed these were normal--though my sense of "normal" has changed considerably since my symptoms have begun.

    I actually share your insomnia, fogginess, twitches, shakiness; I also have palpitations and so many symptoms it's hard to remember/count.

    I'm sorry to hear about your husband doubting you. I think this is a tricky disease for both sufferers and partners of sufferers, in that it is mostly invisible and yet so pervasive. Has he read up on it at all? It might be helpful to have him read some of the other people's stories and generally about the deficiency. Just a thought.

    Hi Scout,

    Thank you for your kind words and for your thoughts. It is encouraging to have found a doctor who is willing to help, but somewhat discouraging that he knows little of the condition/treatment options. It feels like I have to do all of the work, and it's a full-time job! Perhaps I should try a hematologist, like you suggest. I'm just not looking forward to another doctor treating me like I am crazy.

    I did think about using the same dose for methylcobalamin, though the few mentions I did find seem to suggest--oddly--that much higher doses are used with methyl. It would be great if you could ask your doctor.

    Yes, I probably should re-check my levels, though this always runs the risk of having a doctor tell you your levels are normal (well, yeah, I've been getting injections).

    Anyway, hope I answered everything.

    Thanks to you both, and take care.

    Talshi

    Last edited by talshi; 11-08-2008 at 02:08 PM.

     
    Old 11-09-2008, 09:04 PM   #7
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    Re: B12 deficiency: Methylcobalamin injections info needed

    Back in 1996 my B12 level was 69 and i was started on cynocobalamin 3mil twice a week, it took me three years to get my level up to 500 and then from there on I inject myself(or hubby does for me) 2mil every other week now for 9yrs. Methylcobalamin(sp) didn't work for me so I take the other cobalamin along with B12 sublingual tabs. I lack the intrinsic factor in the stomach that aids in the absorption of B12. I had that low of a level for a long time and have lasting medical problems stemming from it! I get a b12 level check every three months because my level drops drastically even with shots, sometimes I have a shot every week for 6 weeks then get checked and try to keep it up there. I've never had a level above 1000. I see a neurologist and hematologist for this. It's a tricky disease and Ive had all those symptoms and still a few of them linger! I had permanent damage but it's tolerable. Good luck and see a hematologist or neurologist and get treatment, my grandmother died from pernicious anemia back in 1950 and thank God we have the shots now.

     
    Old 11-10-2008, 06:54 PM   #8
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    Re: B12 deficiency: Methylcobalamin injections info needed

    Talshi--I would really suggest that your doctor do some of his own research, not you the patient. He should have his own sound sources to reference I would think. It sounds a little strange to me. I would change doctors in this case.

    A good book if you are not familiar is; "Could It Be B-12" it may answer some of your questions. Regarding doses, I have read that you should use hydroxocobamin V Cyano IMs if available. A typical protocol for B-12 IM's is 1 mg every day or every other day 5-7 times, then once a week for 4 weeks and then once a month for life. If you have a true deficiency. It is the loaded doses that are needed to saturate the system so that your body will begin to store the B-12. Regarding the SBL B-12 Methyl by Jarrow in 5mgs daily in between shots. Good luck to you. FLFLOWERGIRL

    Last edited by FLFLOWERGIRL; 11-12-2008 at 07:38 AM.

     
    Old 11-12-2008, 06:51 AM   #9
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    Re: B12 deficiency: Methylcobalamin injections info needed

    Hi FLFlowerGirl,

    Thanks for your reply and words of encouragement. You're right, it is strange that I need to do the research, but it's about 10 steps ahead of what the other doctors were offering me, which was nothing (actually, scratch that, they were pointing me in the direction of counseling services). He is the first doctor I've seen who is willing to listen, to recognize that B12 might be my problem, and to prescribe me injections--despite not having heard of them.

    I have read Sally's book, and she actually does mention Methyl as possibly more effective than Hydroxo--but no mention of dosage. From everything I've read, it doesn't seem like 1mg monthly (which is the standard for the other ones, though of course this varies per person) makes sense for Methyl. Hence, my question.

    I am still working on finding a doctor who actually knows her/his B12 stuff, so that I don't need to figure it out for myself. Anyone know a B12-proficient doctor in the NY area?

    Thanks and feel well,

    Talshi

     
    Old 11-12-2008, 08:18 AM   #10
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    Re: B12 deficiency: Methylcobalamin injections info needed

    Originally Posted by talshi
    Hi FLFlowerGirl,

    I have read Sally's book, and she actually does mention Methyl as possibly more effective than Hydroxo--but no mention of dosage. From everything I've read, it doesn't seem like 1mg monthly (which is the standard for the other ones, though of course this varies per person) makes sense for Methyl. Hence, my question.
    Hi Talshi--
    If you are interested , I was reading how Vitamin B-12 deficiency is commonly misdiagnosed.


    From what I have read, Sally recommended Hydro V Cyano for the protocol mentioned in my post. She only mentions Methyl as the SBL 5mgs daily between IM's. I would think this would be at least worth a try and worse case scenario, if it didn't work, try the Methyl and further research in the meantime to your satisfaction. I think that it would be prudent to get started right away in order to feel better and reverse symptoms that you may be experiencing.


    I am still working on finding a doctor who actually knows her/his B12 stuff, so that I don't need to figure it out for myself. Anyone know a B12-proficient doctor in the NY area?

    Have you seen a Neuro yet? They know much more about B-12 and prescribing meds. Good luck with your search for info. and docs. Keep us posted. FLFLOWERGIRL
    Thanks and feel well,

    Talshi

     
    Old 11-27-2008, 07:51 PM   #11
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    Re: B12 deficiency: Methylcobalamin injections info needed

    Hi
    I'm new to this and I need advice.
    Here is my background. Had surgeries 15 years ago due to doctor error I now have liver issues. Second set of surgery 2000. I have had enlarged red blood cells for at least five years. My old gastrologist said it was just part of the liver stuff. I switched gastrologist 8-08. New gastrologist said it could be b-12 said take pills recheck at next appointment. I go back in January. I also discovered in July a thyroid problem and switch doctors in Oct for this. That doctor is internal medicine and said the same thing about b-12, but he did check levels, 129 (10-08) also did antibodies test. I have megaloblastic anemia so got b12 shots 5 first week, one a week for 1 month and 1 a month later. My level is now 137.
    Dr. doesn't know what is going on is checking with other Dr.'s. Starting shots again (5 days a week on Monday)
    I have a headache almost always. joint pain, muscle pain, spasms, fatigue,hard time focusing, burred vision, ringing in my ears. Fatigue has gotten better since I started shots. Eye twitch and ring in my ear a little better.
    What kind of Dr. should I see?
    What questions do I need to ask?
    Jesse

     
    Old 11-28-2008, 10:03 AM   #12
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    Re: B12 deficiency: Methylcobalamin injections info needed

    Quote:
    Originally Posted by jesseblue eyes View Post
    What kind of Dr. should I see?
    What questions do I need to ask?
    Jesse

    What kind of Dr. should I see?
    You should see a GI doctor to find a cause of the B-12 deficiency. Also a Hematologist would be in order IF you are not able to correct this issue or need to get a B-12 script. I would not mess around with PCP's at this point, you need someone that is well versed. A GI works with the gut and knows his/her business.

    What you should know:
    Causes of B12 deficiency can be divided into 3 classes:

    Nutritional: diet
    specific drugs PPI's, H-2 blockers, alcohol abuse, nitrous oxide, antacids, metformin.

    Malabsoprtion Syndromes: AI disease; Celiac disease [gluten enteropathy] PA, Crohn's disease, H.pylori, bacterial overgrowth of the small bowel, transcobalamin II deficiency, inborn error of B12 metabolism, infection and gastritis.

    Gastrointestinal Causes: Surgical such as gastric bypass, stomach/small bowel removal/cancer, injury, ulcers, radiation therapy to the ileum or stomach, pelvic region.

    B-12 can last 2-5 years with a malabsorption going on. B-12 deficiency is treated the same even though the reason may be different. Some docs don't get so worked up over B-12 because it is treated usually with B-12 injections for all.

    Your GI doc will know what tests to run and what to R/O. There are many things and they usually like to run a couple that point to a possible direction and then go from there. Diagnostic testing is also something that they do.
    Good luck to you. FLFLOWERGIRL

     
    Old 11-28-2008, 07:17 PM   #13
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    Re: B12 deficiency: Methylcobalamin injections info needed

    Not all GI Doctors are created equal. It took three years to get anyone to dig deeper into my problems.Finally when I was about to lose my job because of my irratic behaviour I went to a hemotologist who ran tests and then he sent me to a neurologist and then of course more testing. My GI never considered B12 even tho I told him my grandmother died from it at the age of 43 in the early 50s' he just kept pointing to an ulcer. That was back in 1994 and I've been giving myself injections since then every other week!

     
    Old 11-28-2008, 09:21 PM   #14
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    Re: B12 deficiency: Methylcobalamin injections info needed

    NancyH--That's a terrible story. I guess that would be the key indicator to change doctors, but you may not have know this at the time. I am very sorry that you had this experience. No, not all doctors are created equal. I thank goodness that there are some that really care and what I consider a good doctor, well, it is hard to find them. I was fortunate that my GI was on target and very well versed in his field. I had a couple GI complications and he was able to help me. I can't say that we didn't have our differences as doctor/patient because we did, he even blew me off once. I think this was his sweet personality coming out. But regardless, I was looking for someone that could give a sound diagnosis and that he was great at so I overlooked the other. The rest is history! Most GI docs do know about B-12 and are better with this than others, but this is my opinion, I am just a patient. What was your B-12 deficiency from? Hope that you are feeling better now that you get the B-12 that is needed. Best of luck to you. FLFLOWERGIRL

    Last edited by FLFLOWERGIRL; 11-28-2008 at 09:23 PM.

     
    Old 12-05-2008, 01:20 PM   #15
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    Re: B12 deficiency& Low iron stores

    Hi there,

    I just got blood test results from my GP and she told me that my Vitamin B12 levels are low aswell as the iron store levels are low.

    She has suggested to get the Vit B12 injections or take an oral Vit B12 supplement aswell as iron supplement.

    I got my first Vit B12 injection yesterday and I feel really tired today and am wondering whether to continue to get the injections or take the tablets as the Dr told me the injections are more effective so am interested to know what works better and quicker as I have been feeling exhausted now for 6 months.

    Also anyone know of a good iron supplement that doesn't cause constipation?

    Any help would be greatly appreciated

     
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