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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)...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
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
Hi Nancy,

Thanks for your reply.

Back in November 08 my blood test showed to have B12=246 and Ferritin(iron stores)=21. Doctor said my B12 should be double and my iron stores much more aswell.

Although I have got my blood checked for numerous other things since then to rule out what may be causing the low B12 and ferritin e.g negative test to intrinsic factor, I haven't got my B12 and ferritin levels checked since November. For the moment I want to take a break from the blood tests because I have had alot over the last few months so I will wait a bit until I get another blood test to check what the levels of B12 and ferritin are.

Do you know based on my levels in Nov 08, how long it should take?

I have switched to getting the B12 injections every 2 weeks and am taking Ferrous Gluconate iron tablets but am really feeling exhausted the last 2 weeks and just need to know from someone who has experience with this how long it takes to bring up the levels and is there anything that speeds up the process? It is so exhausting even just to do normal everyday things and I feel like a zombie most of the time and it is very unlike me because I am usually very determined and want to achieve things but I have no energy or desire to do things at the moment.

Uh...any advice?





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