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Old 07-31-2009, 08:20 PM #1
magenta272 magenta272 is offline
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Smile FINALLY a dr who knew!

I left my dumb dumb doctor who told me my B12 def symptoms of tremors was mental and that I should see a therapist and went on search of a new general pract. I had my first appointment this past thursday with a new GP and I was literally praying (and I am not religous) that he would be well educated on b12 and be understanding and listen to me.

Well, here was my experience... When I made the appointment I told the nurse I was dealing with b12 def and I wasn't happy with my treatment but that I was also just looking for a new GP. So she must have told him because he came into the office and immidietly started talking to me about my condition. So after I started tell him what I've been dealing with he said right away... "you should be coming in to get a shot (1000mcgs) of b12 monthly for about 6 months, then come every 3 months or so" And he just couldn't understand what the big deal was and why my last dr wouldn't give me the shots monthly. It was so not a big deal (his words).

As soon as he said that, A HUGE weight was lifted off of me. I said, thank you, that is all I wanted! When I mentioned my tremors he said right away, "oh yea that is a nuerological symptom caused by b12 def" basically confirming that I am NOT crazy. HA HA!

And then I told him about how I went to a Hemotologist who told me that a b12 level of 180 is almost normal and I shouldn't be considered defiecient and that my feeling like crap had nothing to do with b12!!! Well my new dr said that that is totally wrong and I need to be over 500 to be considered close to normal!!!

Basically again, confirming that I wasn't crazy. I know I shouldn't need a dr to confirm that for me. But for hte past few weeks I have been crashing physically. I knew I was needing a shot, that the vit alone wasn't enough right now! But feeling like that, physically ILL and not having a dr to go to and say, "I feel terrible and I know the shot will make me feel better" This was really hard to deal with. Also starting to wonder if that other dr was right and it was in my head!

I am so releived to have actually found a dr who knows how to treat my condition. And I also feel that my old dr was only giving me a low dose for my shot because it would take days for me to feel better. I got my shot yesterday and with in hours I was feeling better... of course all day yesterday my mind and body was racing like crazy. But today... I feel really good. I still had a small amount of my symptoms... but felt really good for the most part. Partially because I finally have a great dr!

sorry for the very long message... I needed to get this out to people who understand what I've been going through. Thank you all again for being here for me, my friends just dont get how difficult this can be!
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Old 07-31-2009, 10:42 PM #2
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I'm happy that you went looking for a new doctor and found one who was a bit more informed about B12 deficiency! Good for you!
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Old 08-01-2009, 07:17 AM #3
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Default And--

--you should be taking B12 orally, anyway--everyday--a minimal dose of 1000mcg/day should be enough for you to passively absorb enough ( 1-2% of th dose) a bit so that you can stay up in level between shots, and possibly also begin to store a bit again.

You can also try a higher dosage (up to 5000mcg/day) to see if that would make you feel more optimal; some people get a little bit more hyper on the higher range doses but there is no known toxicity level for B12.

Many of us here take dosages in that range as a prevention, given the high requirements for B12 that damgaed nerves have. The methylcobalamin form is probably best--no need to convert the commercial cyanocobalamin preparations into methylcobalamin in the body if you can avoid it.

Most of all, it's a cheap way to keep up your level--I buy 3-month supplies (90 lozenges) for about $8 dollars through one of the many internet vitamin sites.
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Old 08-02-2009, 08:18 AM #4
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I've actually been taking suppliments on a daily basis since I was told I had this, since the first week of june. Started with 1000mcg and recently upped my dose to 3000mcg.
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Old 08-03-2009, 06:17 AM #5
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Well, my level was 600 and my doctor said that was a little low in his book. Guess what, he gave me one shot and told me to take supplements (methyl. type...like Mrs. D says) and I feel BETTER. So, your original number of 180 (I suppose these tests can all be different) seems really low to me. Keep in mind, that depending on your test results, its possible that you might be able to supplement at some point with those methyl tablets instead of the shots. However, I don't know the technicalities. Mrs. D and Rose know the details. I believe Rose from this site has a detailed website/blog. You might want to do a search. I'm very glad you were persistent in finding a doctor who took your needs and wishes into account! Good for you! Feel better!
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Old 08-03-2009, 06:22 AM #6
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Default Rose's site is:

http://roseannster.googlepages.com/home

She doesn't post here much, but many of us learned a lot about B12 from her experiences with deficiency.
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Old 08-05-2009, 05:38 PM #7
magenta272 magenta272 is offline
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Since my first dr was fighting me on shots I tried to go a month with out getting a shot, increased my dosage to 3000 mcg a day and still started feeling terrible... really bad. My new dr is recomending 1 shot of 1000mcgs a month, continue to take the 3000mcg suppliments sublingual daily. I'll go once amonth for the shot for about 6 mths and then every 3 mths. I am also going to get tests done on my stomach to see whats going on there. I don't know if I am able to absorb it, because of the way I feel when I don't get my shots.

Basically what it comes down to is... I feel very comfortable with what my new dr suggested. No harm is tryin right?

thanks for all the information
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Old 08-05-2009, 09:53 PM #8
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No problem at all doing both. I just suggested this to a personal friend of mine. She says she does incredibly better just after the shot, so she lives for the shots, but the incredible doesn't last for the entire month...only a few days.

The important thing is to get the B12, and a lot of it. And while most people do great on oral, and most medical literature says that oral works as well or better than shots... I've heard from a few who insist they do better with shots. So, who am I to say it isn't so?

Just curious~ Are the shots cyanocoblamain or methylcobalamin? What about the oral? Not all sublingual tabs are methylcobalamin.

Perhaps once you have recovered a little more, you will be able to move to just oral as maintenance. It is cheapier and easier. You will always want to keep a close eye on your level, until you are sure that whatever you are doing is keeping you at the top of range!

If you are getting an endoscopy, be sure they take some biopsy samples while they are in there (to look for celiac disease).
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Old 08-08-2009, 09:13 AM #9
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methylcobalamin for both actually. I read that on here that it is what I am supossed to be taking. Plus my dr says the same thing. It was great to here my dr say the same things I read on here.... lol

So yea, thats the plan, 6 mths of shots along with suppliments and then every 3 mths then hopefully I won't need the shots at all. I am sure I'll be taking the suppliments everyday for the rest of my life.
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