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Your levels must have been really low since you are getting injections once a week. How long did you the B12 deficiency symptoms?

I am 42 and had the symptoms off and on for about a year. My doctor was shocked because I have Pernicious Anemia and it usually doen't show up until closer to 60 years of age. My sister is 38 and was just diagnosed last month with the same thing.

I only get one injection per month.

The 1st one was a double shot of B-12 and the last two was just the single dose.

I did have my blood drawn this morning to check my levels and will go back next week to see what dosage I will need.

I hope you get to feeling better soon and you would think with that many injections, you would.
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~
Scout,

what symptoms did the hematologist tell you people get when their B12 level gets low? Are tingling arms and hands one of the symptoms? What other symptoms do people get? Thank you!

FG
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,

I've had sore hips for months. My doctor said it could be some kind of inflammation (no tests done). It's not getting any better. Do you think yours are from a low B12? Is there a connection?
Our doctors are just too busy to take the time to listen to us. Prescribing antidepressants is a lot easier, cheaper and faster than investigating our symptoms, and it lets them off the hook. I just saw a program on TV where the officials would like to see the average patients' visit reduced to just six or seven minutes. Way to go! :rolleyes:You don't have to take the pills. Be careful. As you've already noticed, there are side effects.

flowergirl
Hi all
Ohhh B12 deficiency what a trip!
I started not being well 5 years ago & it has taken that long to be diagnosed as the drs (all 9 of them ) kept telling me my levels were normal...I was getting symptoms at 372.....It had to get to 130 and serious symptoms before my new dr had his suspicions and tested me.......The uMMA (more sensitive than the serum MMA) & homocystiene tests are very important as they will pick up a deficiency if your levels are normal the levels really need to be upgraded normal is different for all and anything under 550 can present symptoms you should also get tested for Red Cell Folate....
I have come te experience that the type of B12 is crucial indeed...Here in Aus we normally treat defiencies this way Hydroxocobalamin injection everyday for 7days then breaking down to just 1 every 3 months that will work on correcting blood problems like PA but you will not get to much other healing.....Hydroxo needs to be converted as does Cyanocobalamin (one I would aviod all together) to Methylcobalamin and Adynosedylcobalamin (i havent spelt that write) I was having Hydroxo injections with not much help my new Dr treats it differently and rather aggresively I now have Methylcobalamin injections of 10,000mcg 3 x a week for 3 months then we will go down to 2 ect I also take sublinguals 5000mcg everyday and multi vitamin and folic acid...Folic acid is a crucial cofactor for B12........I was really ill with numbness and pins and needles memory loss, extreme anxiety ,elctrical like pains in my body, vision problems, foggy head,fatigue,positive for rombergs (fell over all the time when I closed my eyes) couldnt walk well in the dark, couldnt talk properly (by now my husband was getting really really concerned)........I was told that most of my symptoms because of there duartion would stay with me,,,,,,,but that is wrong I have no more numbness or back pains ect.....My stomcah issue were the first to heal I can think clearly have great energy ect I have had 17 injections and big doses as you can see but I am healing & I know i have the Methyl & my doc to thank for it....Methyl is the active form of B12 so it does not need to be converted and is taken up more into the cells....

Some peolpe I know also needed ADB12 which greatly improved their energy levels......My doc said I was low in folate so I neede supplements but it is crucial when having B12 injections as they work together and large doses of B12 can pull down the folate this works a treat for me I take one with my injections....

I feel that docs pay to much attention to lab levels if you have been having injections and the levels go up which they will most of it is just circulating and not used anyway and the say oh lets just give them to you every month this is not going to heal damage done it is just not enough the healing takes a while and you need to saturate the system with it...If one is still having the symptoms you must address it more than 1 per month even if the docs say no you can treat yourself with the sublinguals using methylcobalamin.......

I am living proof that healing can take place and I know of plenty more some who ended up in wheelchairs because of the deficiency

Happy to help with any questions

Good luck all
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 Ashleymichele23! First of all...what was your B12 level on the test? B12 pills are okay to supplement with,but if your B12 deficiency is in the tissues then the B12 injections would be prefered.

Even a slight borderline low B12 deficiency can cause a lot of damage to the nervous system...which can be correctedwith B12 injections.Did your dr. do a homocysteine test,folic acid test,methylmalonic acid test and lactate dehydrogenase also intrinsic factor blocking AB tests along with the direct B12 level tests?I know that sounds like a mouthful,but they are necessary at getting a full picture of what kind of B12 deficiency you have.

The B12 tablets are okay,but I'm just concerned that you might benefit more from the injections.

If you're low in folic acid also that is important to know.You can be low in B12,but at the same time your folic acid level might be normal.That's why All those tests are important.

If you don't know if your dr. did a thorough look at your B12 picture than I'd definitely call and find out!

Hope this helps...and I didn't mean to confuse you by all this...I just know that drs. seem to brush-off B12 deficiencies and Not treat them correctly.Is your dr. a hematologist or just a GP?

I have a B12 deficiency also.......so any questions you have I'd be more than happy to answer them!

May I ask you what symptoms you have?That's a key to if you have any neurological damage(most of that can be corrected,but it takes a while).

Scout~
Hello,
Thank you for your response! The doctor did say take the B12 w/folic acid and it was slightly below range (whatever that means). What kind of Neuro. symptoms have you had with low B12 because I think I have had some too.

THANKS..
hi my b12 is on low normal 227,range 180,800,doc said it is normal,i have a lot of symptoms ranging from twiching numbness,memmory problems,blurry vision,to name but a few,i get a lot of pain in the back of my neck and numbness in the front ,i also loose my sense of taste,do anybody have this or could it be nerves,thanks shirley:)
[QUOTE=moommin;3754435]hi my b12 is on low normal 227,range 180,800,doc said it is normal,i have a lot of symptoms ranging from twiching numbness,memmory problems,blurry vision,to name but a few,i get a lot of pain in the back of my neck and numbness in the front ,i also loose my sense of taste,do anybody have this or could it be nerves,thanks shirley:)[/QUOTE]

Dear Shirley
Your B12 is certainly low.....It is not surprising you have those symptoms....I had all those problems plus many more.........
Has your doctor done a uMMA & Homocysteine test these will be elevated in a B12 defeincy even if your levels are in the normal (which by the way is 550-1200 in Japan it is way to low herre)....When you say could it be nerves do you mean stress,anxiety ect?......B12 will cause havoc on your nervous system.......I have a defeincy or should i say did almost all my symptoms have gone thanks to some good treatment from my doc......So if I can help in any way please let me know......scout is also knowledgable in this area perhaps she will chime in tooo.
Keep in touch

Cheers
Rainbow End;)
Moomin,
It is very interesting reading your post, loss of taste--- I have been anemic, low ferritin, low D, low thyroid this past 8months.. numbers have gotten better on supplements but I never had my B12 checked and my cortisol levels and had that checked last week. The Dr. called me and said I should start a B12, folic acid supplement twice a day due to the slighlty low number (although I do not know what he is considering slight). I too have had the numbness, the worst thing has been the loss of taste and I have not been able to explain it to anyone--sometimes it is fine and other times I cannot taste what I am eating. I wonder if it is coming from the B12 deficiency. Does anyone know if this can cause this. With the low ferritin and anemia that causes so many physical symptoms I have gotten so confused on what is causing anything anymore.
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~
[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:)
It is really interesting--I just found out I have a B12 deficiency and I have had all of the symptoms they talk about having this deficiency, weakness, foggy head, etc.... I am anemic and thought all of the symptoms are coming from that, but now I am wondering if some of these symptoms are not from low B12..
[QUOTE=Ashleymichele23;3760543]It is really interesting--I just found out I have a B12 deficiency and I have had all of the symptoms they talk about having this deficiency, weakness, foggy head, etc.... I am anemic and thought all of the symptoms are coming from that, but now I am wondering if some of these symptoms are not from low B12..[/QUOTE]

Hi
Yes I would have to say they probably are....
What sort of B12 therapy has your doctor suggested for you........And do you have a lot of tingling numbness ect

Cheers
[QUOTE=Ashleymichele23;3761975]I am SO surprised at how these doctors do not check for the B12 deficiency when people keep coming back with the same symptoms. When I had my B12 checked a few weeks ago and the only reason I had it done was because of these boards and hearing the symptoms and I pretty much have most of them they talk about w/B12 deficiency, along with anemia, my doctor called me and said I was deficient and take B12 w/Folic acid, but that is all he said, I have no idea what my numbers were and he made light of it. This could be the reason why I am exhausted, why I feel brain fog and why I have weakness when I walk sometimes, it sounds like these are all symptoms of this. Why do the Drs. miss this?[/QUOTE]

Hi Ashleymichele23
Most certainly is thecause of your problems
It is great you heeded the advice and you obviously felt truth in it and had the tests good for you...
I dont know why docs dont pick it up perhaps they like to look for the major things first even though we know deficiency is very major.. I had many tests for it but at first it was always in the normal range even though it was low then it went way down past normal by this stageI was pretty well ill......I think if I wasnt diagnosed )and it really was very strange how I come to get that last test but thats another story I know persistance helped) I would have no memory either be dead or in a nursing home and i really mean that I was that bad & I am only 43.....
Can you get hold of your levels?
I also think he is being to blaze about this you need to have other tests to find out why you are deficient there can be some big issues underlying there that need to recognized gluten being one of them..
Also are you taking oral pills or injections and how much and what type of B12 these are all relevant......

Cheers
Rainbows End
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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