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  • Vitamin B12 deficiency and extremely tired don't find injections help much

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    Old 09-30-2008, 06:47 AM   #16
    drs
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    tlhalabama, I was just curious, since you said you had momo twice and have the V. B 12 def.

    Have you been tested for Epstein Bar virus? the symptoms fit closely. Diana

     
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    Old 09-30-2008, 06:51 AM   #17
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    What symptoms do people have when they are lacking B12?

     
    Old 09-30-2008, 08:05 AM   #18
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    I found out my numbers yestersday. When diagnosed, my level was 284. After receiving 3 B12 injections, I am now at 325.

    The doctor ordered continued injections for 3 more months and bloodwork.

    If my levels continue to increase, she said that I may can do a B12 nasal spray once per week.

    I have lost 5 pounds in a month, which has her concerned. Personally, I like that part.

    Drs, My Epstein Barr test was negative.

    Last edited by tlhalabama; 09-30-2008 at 08:06 AM.

     
    Old 09-30-2008, 09:17 AM   #19
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Oh, that's good, at least that one less worry.
    Hope you start feeling better soon.

     
    Old 09-30-2008, 10:11 AM   #20
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    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~

     
    Old 09-30-2008, 10:57 AM   #21
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    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! You don't have to take the pills. Be careful. As you've already noticed, there are side effects.

    flowergirl

     
    Old 09-30-2008, 12:09 PM   #22
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Scout and Flowergirl, Thank you. Yes, I live in Washington State. I started taking sublingual B12 (2500mg pills) myself as my doctor just disregarded the whole issue! I managed to get the level up to 424 but am having to pay for blood testing myself as my doctor won't order it and even though I have great insurance, they won't pay unless the doctor orders it!! I haven't had it tested in a while. I will read up on the "methylmalonic acid test". I am QUITE SURE my doctor would laugh me out of the office on that one.

    I also paid for a Candida Albicans test (ELISA) and just got the results--POSITIVE. I don't even know if I should bother to mention that to my doctor as I hear most doctors do not put any faith in "Candida testing".

    My ionized calcium has been high on all four occasions I have had it tested. 1.35, 1.35, 1.41, 1.42 (1.17-1.32). I also have "inappropriately normal" PTH. According to Dr. Norman's parathyroid.com website, the ionized calcium "Never Lies" but my doctor says I do not have pHPT. One of the main symptoms is bone (hip) pain! I am SO TIRED of switching doctors and having them all think I am crazy!!

    I hope I can get to the bottom of the problem before it manifests into something unfixable! I am just not sure where to turn anymore!

    Please do not suggest switching doctors. I have already switched my GP and I like the new one. (she just doesn't want to upset insurance by ordering so many tests) I THOUGHT she was listening to me and actually HEARING me (until the antidepressant saga!)! I have had xrays of my hips. I have seen a neurologist, a gastroenterologist, an endocrinologist and a otolarnygcologist. I did have precancerous polyps found during colonoscopy (taken care of) and I also have GERD found during endoscopy. I also have Hashimotos (HypoT). I wish I could find someone to tie things together. I will keep taking my own notes.

    I also wanted to say that the only blood test that always comes back CLOSE to out of range is MCV. It is always 98 (81-100). If out of range makes no difference, this certainly wouldn't matter. Maybe a haematologist would be able to help? You guys are the best! Thanks, Hoppy

    Last edited by hopalong_too; 09-30-2008 at 01:20 PM. Reason: added some info

     
    Old 09-30-2008, 03:41 PM   #23
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    hi....reading what you're going thru I have to say:"Wow....you are a strong person!".Never let the drs. opinion get you down...just keep advocating for yourself because you know you don't feel well.....something "has to" give sooner or later.It's just such a shame you have to suffer right now(and do most of the investigative work yourself!).

    Yes a good choice would be to see a blood dr.(hematologist)....they will look for things that a GP dr. wouldn't even think of.

    So do you take medication for the Hashimotos?I've heard of that...has to do with thyroid doesn't it?Please explain it a little bit more(I don't have a medical degree in that area...only B12 and a few others things....just kidding!Sometimes I do feel like I'm studying for a medical degree....funny,fnny,funny!)

    I wish they would come up with a thing where you could put in all your symptoms,etc.and then it would tell you which tests you needed and then give you a firm diagnosis....wouldn't that be great....hahaha...we should only be so lucky!

    Scout~

     
    Old 09-30-2008, 04:12 PM   #24
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Scout, Hashimoto's thyroiditis is an auto immune thyroid disorder which causes hypothyroidism. I take Synthroid and Cytomel daily for this. To diagnose it, the doctor does a test for TPO and TG antibodies. Both of mine were positive. The body just destroys the thyroid slowly so thyroid levels have to be taken and adjusted frequently. I am new to this. I have been on meds for it for about 10 months now. I won't even bother with the symptoms as it would be very easy for you to check it out if you are at all interested. This GP I go to now is the one who listened to me with regard to the thyroid. I do not want to leave her. I would rather stay with one doctor and try to work things out. Thanks for asking. Hoppy

     
    Old 09-30-2008, 09:02 PM   #25
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Hi Hoppy!

    Quote:
    I also wanted to say that the only blood test that always comes back CLOSE to out of range is MCV. It is always 98 (81-100). If out of range makes no difference, this certainly wouldn't matter. Maybe a haematologist would be able to help? You guys are the best! Thanks, Hoppy
    It looks like you've taken matters into your own hands. I don't blame you for wanting to have all these tests done. I find that doctors tend to order the same tests over and over. I read that it is actually cheaper to run a whole panel of tests than just a single one. Hard to believe, isn't it? Managing to stay on top of things with multiple medical issues can be challenging. Many of us start out with high expectations, only to end up disillusioned. As much as we'd like to rely on our doctors for all of our healthcare needs, we have to do our part. This includes getting informed. The short duration of a visit to the doctor's office does not encourage any exchange of information. We are lucky if we manage to ask a couple of the most pressing questions in the time we have. The rest is up to us.

    I have the opposite "problem" from yours. My MCVs are borderline on the low end of the spectrum. I've just looked it up, because I had no idea what that meant.
    MCV - mean corpuscular volume- refers to the average size of the red blood cells.
    When it is elevated -macrocytic- as yours is, it means that the red blood cells are larger than normal. This is often seen in anemia caused by a vitamin B12 deficiency.
    When the MCV is decreased -microcytic- it means that the RBCs are smaller than normal. This is seen in an iron deficiency anemia, or thalassemias.
    I'd say these types of abnormalities are NORMAL in anemic people.

    Keep up the good work!
    flowergirl

     
    Old 09-30-2008, 09:04 PM   #26
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    hi Hoppy...hey I just thought of something....sometimes meds we are taking can do things to us...like for myself I know that when I take antibiotics they lower my B12 level and I have to have extra B12...so my dr. does not give me antibiotics unless really necessary.So maybe you could research the meds you take for your thyroid...it's just a suggestio

    I agree with you that you should stay with your current doctor.I don't think my doctor is that great,but he's gotten better since I've been his patient steadily now for almost 2 years now.I think after they start to know you better they seem to do more for you and even care about you!It seems then that the pieces start to fit together,but I know how frustrating it is to have been to so mny drs. and not gotten any answers...so Yes you should definitely stick with your present dr.!

    As far as B12 goes I know that sometimes people will mention to their drs. that they have a relative with such and such so then their dr. will order tests for them seeing certain health issues sre hereditary.B12 problems are often hereditary.My mother had to have B12 shots,but only temporarily,because she needed them when she was going thru peri-menopause and so I've heard other women have this too.

    I guess I'm fortunate,because my dr. will usually check whatyever I ask him to...unless he hinks it's really not necessary,but then he explains why I wouldn't need that test.So with that I at least feel he is listening to me and taking the time to explain things.

    Take care,Scout~

     
    Old 10-01-2008, 12:32 AM   #27
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    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

     
    Old 10-01-2008, 02:53 AM   #28
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Rainbows end,
    I have been tested for many things also, anemic, low ferritin, low D, they never tested me for B12 or my adrenal functions. What should I ask for when I go to the doctors to be tested for this, just the B12 test, or are there are things in that area I should ask for to be tested for. Thanks.!

     
    Old 10-01-2008, 09:05 AM   #29
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Quote:
    Originally Posted by Ashleymichele23 View Post
    Rainbows end,
    I have been tested for many things also, anemic, low ferritin, low D, they never tested me for B12 or my adrenal functions. What should I ask for when I go to the doctors to be tested for this, just the B12 test, or are there are things in that area I should ask for to be tested for. Thanks.!
    Hi Yes
    You need the following;
    uMMA (more sensitive than the serum MMA)
    Homocystiene
    B12 serum
    Red Cell Folate.....
    As mentioned in my previous post the first 2 will be elevated if there is a deficeincy even if the B12 serum is normal by lab standards Make sure you ask for copies of all your lab tests if they say noraml dont just take there word for it plus it helps if you want to compare something later...
    If you want to have your adrenals checked you will need a cortisol blood test if it is elevated they will do further testing mine was due to severe stress though.....
    Hope this helps and be insistant on the tests you want.
    Cheers

     
    Old 10-01-2008, 09:45 AM   #30
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    hi,i read if you are low on b12 you have no moons on your fingernails and ridges, i have no moons, only on my thumbs and they are very faint,is this true.shirley

     
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