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

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    Old 10-01-2008, 11:34 AM   #31
    hopalong_too
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    I find that doctors are very reluctant to order any sort of urine or blood test for fear of repercussions from the insurance companies!! Every time I mention a test, for example B12, my doctor said my level was great at 324 and because it was normal, the insurance company would not let her order another one so soon! I am also having the same issue with calcium and PTH. My calcium is constantly above 10 with the cut off at either 10.2 or 10.5. I have had quite a few at 10.5 and as mentioned earlier my ionized calcium has always been high. The doctor just says not high enough to worry about. I asked if I could have the test every Monday for 3 weeks (that was suggested by Dr,. Norman at parathyroid.com). At first she said she would agree but when the first test came back at 10.5 (8.5-10.5) she said no more. When I began arguing that the ionized calcium was high, I was told IT IS NOT RELIABLE!!! A person should not have to go doctor shopping to be able to have blood testing done! Hoppy

    Last edited by hopalong_too; 10-01-2008 at 11:35 AM.

     
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    Old 10-01-2008, 12:03 PM   #32
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    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~

     
    Old 10-01-2008, 12:12 PM   #33
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Scout, Sorry I didn't respond properly last time. Yes my test range for the B12 was 211-911 and my result was 324. That is why the doctor said it is WELL within range! Maybe I can see how much that test is to do it myself. I just hate paying when we pay so much already for the good PPO insurance! Is it a haematologist that does B12 and Vitamin D (I'm definitely low in that!) and such? I will see if I can find one who considers a result below 400 low. Maybe I can get by the nurse! Hoppy

    Last edited by hopalong_too; 10-06-2008 at 09:01 AM.

     
    Old 10-01-2008, 12:27 PM   #34
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Hoppy.....yes a hematologist specializes in looking at everything to do with blood....could you maybe call a hematologist that's in your network and talk to a nurse there?then maybe she could tell the blood dr. your concerns and the blood dr. will call your dr.I know the last thing you want to do is make your dr. upset about this,but just remember>it's your health<and you need to stick up for your rights as a patient!

    Scout~

     
    Old 10-06-2008, 07:59 AM   #35
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Hop, I have Pernicious Anemia and take weekly B12 injections. My doctor also prescribed a heavy dose (5 mg) of folic acid, which he told me was essential for the B12 to do its job efficiently. Do you take folic acid as well?
    Ives

     
    Old 10-06-2008, 08:59 AM   #36
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Ives, I don't take folic acid. I had that tested once about a year ago and the result was 16.6ng/ml (>5.4 normal).

    Last edited by hopalong_too; 10-06-2008 at 09:02 AM.

     
    Old 10-06-2008, 08:19 PM   #37
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    hi Hoppy...how are you doin'????I don't have a folic acid deficiency either....just B12 deficiency.....sometimes you can have one,but Not the other.

    Have a good day! Hope you are feeling better.

    Scout~

     
    Old 10-06-2008, 09:32 PM   #38
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Thanks Scout. I am going to my Endo on Wednesday and have a whole list of things to discuss if he doesn't head out the door too fast! I'll post after my appt. Hoppy

     
    Old 10-07-2008, 05:26 AM   #39
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    My doctor told me I now have a B12 deficiency and told me to take supplements. Should I be taking the folic acid/with the B12? That is what I have been reading.

     
    Old 10-07-2008, 08:55 AM   #40
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    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~

     
    Old 10-07-2008, 12:20 PM   #41
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    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..

     
    Old 10-07-2008, 03:31 PM   #42
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    hi again.....I'd ask your dr. exactly what your B12 number is and what the range is(most labs say normal is 200-1100)......if you're below 400...symptoms start to appear...under 300....well that's where you start to Really have symptoms and feel like you have MS!!!!

    My symptoms at 222 were>weakness in arms/legs,pins'n needles feeling in hands,confusion,cold hands/feet(not being able to tolerate colder temperatures),loss of fine touch(couldn't hold change in my hands),fatigue,loss of appetite,sore tongue,food didn't always taste right,nervousness,numbness anywhere,unsteady walk,dizziness...think that's about it.

    Good luck!

    Scout~

     
    Old 10-08-2008, 12:45 AM   #43
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Hi Ashley

    scout has given you some great advice there with re your tests..
    I would love to know your levels......
    I presented with symptoms at 372 5 years ago I got down to 130 before I was treated my symptoms were like scouts plus a few more to boot.....

    I agree with scout that injections would be better for you Methylcobalamin being the prefered type of B12.....
    Sublinguals are also good for some people i know of a good brand if you are interested........The thing with the tablets is that they do not work on some people thats why those other tests that scout mentions are very important if you have intrinsic factor antibodies for example the tablets wont really do much the subs & injections are better.........

    You could talk to your doc about these and scout & myself know a bit about B12 deficiency and are happy to help you with any questions & suggestions



    take care now
    Cheers
    Rainbows End

     
    Old 10-08-2008, 12:50 AM   #44
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    Oh I also forgot to mention yes folate with B12 excellent it is a cofactor if you docs suggested this that is great...........It helps uptake the B12 better into the system this worked well for me I take one with my injection.....They need to work together to much of one can throw the other off so my docs told me I too had low folate and vitD......My Mcv was edging its way up over that time too......
    ciao

     
    Old 10-08-2008, 04:45 AM   #45
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    Re: Vitamin B12 deficiency and extremely tired don't find injections help much

    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

     
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