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Hello everyone....I have a had aB12 deficiency since 1999.My symptoms were extreme fatigue,pins 'n needles feeling in my fingers and toes,difficulty eatting/swallowing sometimes,confusion,very weak in arm/hands/legs/feet,sore/red/glossy tongue,unsteady walk,dizziness...I think that's about all of them.I have a complicated,hidden B12 deficiency.My levels get borderline-low and the hematologist found that my methylmalonic acid level was sky-high which points to a hidden B12 deficiency.So I had shots for almost 2 years and then I was told to get them 3 to 4 times a year,but I didn't,because our insurance plan wasn't good.Then 5 years later I was depleted again...so now I'm getting the shots monthly,but I have some irreversible nerve damage now because of being deficient for so long.

I still feel tired most of the time though.So I don't understand why I don't feel energy from it....

I have been getting monthly shots again since February 2007 and I just started to get my level up to a fairly decent number.

Have a good week everyone.

Scout~
hi hopalong!do you live in the united states?if you do the normal range for B12 is 200-1100......if you do then 324 is quite low for B12....did your dr. do a "methylmalonic acid test"?if not then request it,because you coyuld have the same as me>a hidden B12 deficiency<...even so 324 is not a good level at all!

that's so how drs. are now...they just handout anti-depressants,because they don't have a clue about why people are sick....to me that is plain laziness on the drs.part and not fair to the patients.

keep posting...don't give up .........it took me over 2 years to find a dr. that actually acted like a dr. and looked for what was wrong with me.....I got so tired of being told that there was nothing wrong with me when my body was telling me otherwise!

Scout~


hi flowergirltoday! scroll down and read my post about symptoms of B12 deficiency....my dr. knew right away I was low on B12 from my symptoms(dr. was a hematologist,not my regular MD).

Scout~
Hoppy......do you have pins 'n needles feeling in your fingers? Just wondering,because that's a definite low B12 symptom...also cold hands.Sorry you are having such a rough time....I have a PPO insurance and it's not that good either...it's a shame that drs. have to let the insurance companies decide what tests are allowed or not......not fair!

What I was trying to tell you before was that sometimes drs. will order more tests if you tell them you have a close relative that say had an "in range" level for a B12 test,but still had low B12 symptoms so their dr. ordered the other tests that go along with testing for "an occult B12 deficiency(meaning a "hidden" B12 deficiency).If you have a copy of your B12 test from the lab does it say what the "normal" range is?The lab my dr. uses says the norm is 200-1100...mine was in range at 278 when I ws first diagnosed in 1999,but the blood dr. said when it's below 400 they do a methylmalonic acid level test,because anything under 400 usually points to a hidden B12 deficiency.I know I've told you all this before,but really your level is not that good.

I wish your dr. could run that other test,but unfortunately I guess that's not going to come about.As far as your calcium level goes I would think the dr. would keep an eye on that one.

When my ferritin was 11 my dr. put me on iron pills...even though the range started at 10(being the lowest number in that range)...so it's plain to see that your calcium is just a hair away from being out of range.......

Scout~
Hi Shirley.....I have good numbers for my hemoglobin and I am B12 deficient.I live in the US and my B12 was 279 when I was found to have a "hidden B12 deficiency"...RainbowsEnd is right on target...you need the other tests to go with the B12 level...your symptoms are the same as I have had...and I've had a Ton Of Them!!!!I'm so sorry you're going thru all this.

Please know that when I wasn't getting my shots regularly I was diagnosed with MVP and now my Dr. can't even hear it when he checks my heart....So the low B12 can mess with your heart...Please Ask Your Dr. to give you a monthly shot to get your level up...I agree completely with Rainbows End>ask for the other tests or at least take a B12 supplement for now.

Again I'm so sorry your Dr. is not knowledgable about B12...this seems to happen to so many people.

Anything else I can say to help please post back....I Really Care!

Scout~
Hi....Yes I had Extreme anxiety when my B12 was borderline low!!!!I get a monthly shot and it took about 7-8 shots to get rid of the anxiety.Also I read that a lot of studies are showing patiens with Alzheimers tend to be low in B12...great idea having your mom take a B12 tablet...you can get the sub-lingul(spelling) at health food stores..you just put a drop under the tongue...it's very good(better than the tablets!).

I also was very shakey and confused when I was so low in B12.....mine is the B12 deficiency that was "hidden"....that's why your dr. needs to do he other tests that go along with the B12 level test...methylmalonic acid test,homocysteine test,folic acid test.

That is so nice that you're looking out for your mom......hope everything gets better for your her.

Keep us posted....everyone here on the boards are very helpful and kind.

Take Care Scout~
[QUOTE=Bluze;3759443]Hi: I'm a 58 y.o. male with many neurological symptoms, blood test showed 234, doc gave me weekly 1,000 mcg injections for 4 weeks ending Oct. 3, and am taking 5000 Methyl subs now. Many symptoms improved, vision and mental fog within a couple days of first shot, however the fog returns now and then (but not as bad as before) and foot numbness is still there but has not gotten any worse.

Here's what I am confused about: I have read elsewhere that once therapy has started the blood test is worthless because it will show normal or high.

But on this board I read about people who get a series of shots, then their doctor tests them again and the number goes from 225 to 300 for example, and supposedly these on-going serum tests are used to monitor how well you are absorbing the B12. Yet other people claim this test is useless in these circumstances, aside from the fact that serum level and tissue level can be quite different.

What is the truth?[/QUOTE]

hi Bluze
Good to hear you are feeling better with the injections and great to hear you are taking methylcobalamin subs are you still having injections too?
methyl is the best for neuro damage I have this in injections in huge doses and my numbness is gone noe I have a little tingling thats great cause I am healing...
You ask a fair enough question and i will do my best to explainn it as i know it
The docs usually will take another serum reading after the patient has been offthe B12 for say amonth b12 doesnt stay very long in the system so they usually will give a few injections hoping that it will biuld up & then test agian..if it is still low they may give injections more regularly or if its higher they may pull back a bit.......
You are right the blood readings are always not reflective of what in the cells that is why the uMMA & Hcy tests are more conclusive........

I personally think you are better off going by how you feel when you are having thereapy for example the injections or subs or pills may reflective a higher serum level but you can still be having neuro signs to help with alot of these symptoms you really need to saturate the system and the levels should be around 2000 and maintained there for healing to take place this has been my experience and the same for many others I know it is also important to have B12s cofactors as well..............

I have 3 injections a week at 10,000mcg and my levels would be through the roof luckily my doc doesnt work like that is going by my lessening of symptoms it has worked really well I had severe symptoms for 5 years.........

Oh I have rambled on again I do this when it comes toB12 it is my passion to make an awareness about it
I hope i have helped answer your question

Good luck with your healing:)
Hi Bethsheba & Linda

I hope you don't mind if I get in on this.What a horrible time for you & your mom Linda...my heart goes out to you.Bethsheba you are a wonderful person....I can't believe how much you're trying to help Linda's mom....You Are An Angel!

I'm still wondering what your mom's B12 level is.I researched B12 'til kingdom come and I agree with RainbowsEnd that all those stomach meds can and do deplete B12.Plus as we get older we don't absorb nutrients as well and have less stomach acid.There are a lot of studies going on how B12(the methylmalonic type Not cyanocabalomin!)is being used to treat patients who are just elderly and also who have other health issues including Alzheimers.They are finding it helps patients recover their memory and they are more clear thinking plus the B12 goes right to the CNS and can repair a lot of the neurological damage.

That is why your mom's drs. should be giving her B12 no matter what.It's non'toxic and is Beneficial.Even the liquid form(they sell it in health food stores...I think it's about $12.00)is really good.It comes with a dropper made in the cap.....you just put it under the tongue.Ask her dr. what her B12 level is......Demand to know what it is!

I know I'm very passionate about B12 as RainbowsEnd is also.There's too many drs. out there who are not up to date on this subject.Did you know that most people who are low in B12 are mis-diagnosed as having a "psychiatric" problem?

Well I don't want to push the B12 thing...it's just one of many things that may be going on with your mom.She should be getting B12 even if she isn't deficient,because older people need it to prevent it from getting low anyways....that's what the experts say!

I really care...it just breaks my heart that your mom's life was fine 'til the drs. started giving her all those drugs.

Don't give up hope Linda...I'm hoping and praying your mom will get better.

Thank you again Bethsheba for all your help and for caring about everyone.I will let you know what happens when I ask my GP for a lyme test...I'm sure he'll say no,but Cindy said he should've checked it anyways,because of all my symptoms......if he won't let me have a lyme test and also check my ferritin level......he's getting dumped ASAP...I'll look for a real dr.Isn't it terrible how we have to beg for tests?Not right at all.

I will keep checking in to see how things are going~Scout
[QUOTE=scout316;3763470]Hi Bethsheba & Linda

I hope you don't mind if I get in on this.What a horrible time for you & your mom Linda...my heart goes out to you.Bethsheba you are a wonderful person....I can't believe how much you're trying to help Linda's mom....You Are An Angel!

I'm still wondering what your mom's B12 level is.I researched B12 'til kingdom come and I agree with RainbowsEnd that all those stomach meds can and do deplete B12.Plus as we get older we don't absorb nutrients as well and have less stomach acid.There are a lot of studies going on how B12(the methylmalonic type Not cyanocabalomin!)is being used to treat patients who are just elderly and also who have other health issues including Alzheimers.They are finding it helps patients recover their memory and they are more clear thinking plus the B12 goes right to the CNS and can repair a lot of the neurological damage.

That is why your mom's drs. should be giving her B12 no matter what.It's non'toxic and is Beneficial.Even the liquid form(they sell it in health food stores...I think it's about $12.00)is really good.It comes with a dropper made in the cap.....you just put it under the tongue.Ask her dr. what her B12 level is......Demand to know what it is!

I know I'm very passionate about B12 as RainbowsEnd is also.There's too many drs. out there who are not up to date on this subject.Did you know that most people who are low in B12 are mis-diagnosed as having a "psychiatric" problem?

Well I don't want to push the B12 thing...it's just one of many things that may be going on with your mom.She should be getting B12 even if she isn't deficient,because older people need it to prevent it from getting low anyways....that's what the experts say!

I really care...it just breaks my heart that your mom's life was fine 'til the drs. started giving her all those drugs.

Don't give up hope Linda...I'm hoping and praying your mom will get better.

Thank you again Bethsheba for all your help and for caring about everyone.I will let you know what happens when I ask my GP for a lyme test...I'm sure he'll say no,but Cindy said he should've checked it anyways,because of all my symptoms......if he won't let me have a lyme test and also check my ferritin level......he's getting dumped ASAP...I'll look for a real dr.Isn't it terrible how we have to beg for tests?Not right at all.

I will keep checking in to see how things are going~Scout[/QUOTE]
It's true she was given a LOT of meds and it has crossed my mind that maybe the drugs they gave her in the hospital did permanent damage to her brain! All the doctors tell me it's not possible, but I'm not convinced. The best way to describe mom is like a scared little child who smokes and drinks coffee. She asks permission to do everything...go to bed, take a shower, smoke a cigarette...really sad. This woman's life is completely opposite of what it was. I have convinced her GP to take the B-12 test. He said he ordered it back in March when she was admitted into the ALF, but the results were not in her file, it's nice to know that he followed up on that one! The ALF director is trying to get the results from the lab. I am reading the book "Could it be B-12" and I have found that the mental illness chapter has stories that are almost identicle to Mom's. It gives me hope, you know? Thanks for all you do!

Linda





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