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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.
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) I had cyanocabalamin injections(1,000 mcg) once a month...I had the radioactive schilling test and that came out showing I do absorb 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 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 I definitely think low B12 can mean low Ferritin also.I have just started to feel 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

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