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  • Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

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    Old 10-25-2007, 02:38 PM   #31
    CTweet
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Isis

    Thank you. I requested the lab today but the doc hasn't signed off on it yet...which means he hasn't even SEEN it yet. I would have thought my nurse would have waived a B12 number like that under his nose the second it came in. (sigh) The receptionist (bless her) put my labs and chart on the top of his pile next to his lunch. Hopefully I will hear from him soon. To feel so bad and know there is a chance that a few shots might make me feel so much better makes for a very impatient person


    Now that I have looked over the b12 deficiency symptom list it all makes sense. Except for the chronic pain post choly. I truly thing its a sphincter of Oddi dysfunction. If I can these two things fixed perhaps I may feel normal again.

    Does anyone remember "normal"?

    Is there a support board for just b12 deficiency or pernicious (sp?) anemia?

    Edited to ad: He looked and signed off and they faxed. I heard her wrong on the phone I guess. My B12 is 150 not 112. Still pretty darn low huh?

    Last edited by CTweet; 10-25-2007 at 02:49 PM.

     
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    Old 10-25-2007, 03:52 PM   #32
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Low B12 can really mess up a person, even if you're borderline you can still experience symptoms. Fatigue is one of the very common symptoms! Other symptoms can even affect your neurologically by damaging nerves.

    You need to find out what is causing your B12 deficiency. It can be a number of things, some are: being on oral contraceptives, heavy period, insufficient B12 in diet (ie. not consuming enough meat, vegetarian, vegan) If this is the case, you might need to take some B12 supplements, and/or get B12 injections, until your levels are back up to normal. After that, you need to solve the problem that is causing low B12 levels, or regularly monitor your levels.

    Pernicious anemia is a condition that happens when the intestines are unable to absorb B12 due to lack of the intrinsic factor. The test to see if you have pernicious anemia is called the Schillings test. (It's an easy procedure) If you do have pernicious anemia, it's not curable, but controlled by regular B12 injections.

    When I was borderline low, I got some B12 injections. I also did the Schillings test, and lucky for me I didn't have pernicious anemia. My doctor thought it was probably due to my diet (I don't eat a lot of meat) and because I was on the pill, and this can affect B12 absorption. Now my levels have been normal, and constant for a couple years.

    Get your B12 levels back up ASAP, and good luck!
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    Last edited by Heather13; 10-25-2007 at 03:53 PM.

     
    Old 10-25-2007, 07:26 PM   #33
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Doc finally called. He wants to do b12 injections once a week for four weeks then check my levels again. I asked him if he thought once a week to start was enough. He said he thought so.... Not that I am wanting needle sticks but I don't think that is enough to start with all the research I have done. Ill start tomorrow morning and see how I do I guess!

     
    Old 10-26-2007, 07:22 AM   #34
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Hello CTweet

    There is a pernicious anaemia society where you can ask questions and will get answers. Other tests to see if you have pernicious anaemia (PA) are Intrinsic Factor antibodies, Parietal Cells antibodies and serum gastrin. If you have not had any b12 supplements, the MMA test is supposed to be accurate. The Schillings Test is not always accurate.

    A b12 level of 112 is quite low. In my opinion you should be having loading doses of B12, that is once daily for 2 weeks then going on to twice a week, then once a week, and finally once a month maintenance. That way you will get your b12 levels up more quickly. It is essential to keep check on your folate and Iron levels as well.

    Regards,
    Cats

    Last edited by catscandance; 10-26-2007 at 07:23 AM.

     
    Old 10-26-2007, 07:33 AM   #35
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Yes, 150 is still very low. And true, you really need to know the cause. Did he not mention any testing for PA?

    I also think it would be good to have more than one shot a week for a while, but if that's all he'll give you, well.......

    Why not also get some sublingual B-12 from the health food store and use it at the same time? It couldn't hurt. The Methyl Cobalamin along with folic acid works best, and should help boost your levels while you are on the shots.

    There isn't a specific PA forum on here but are several out there online I've seen.

     
    Old 10-26-2007, 09:15 PM   #36
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    My whining worked! I got my first B12 injection today. My husband if going in with me in the morning to learn how to do the injections. We will go once a day for 10 days then check my levels.

    Its a nice feeling to have HOPE that I might actually feel better...hopefully soon.

     
    Old 10-28-2007, 12:13 AM   #37
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    CTweet,

    Sorry it took me forever to get back to you. I don't live in Alaska yet. I am wrapping up my Master's degree and will be heading up there to teach in Sep 2008.

    I also deal with chronic pain and adhd. I take stimulant medications to help manage the adhd, so I never could tell if I was tired. It looks like we have about the same level of B-12. I was at 150 before I started the b-12 injections.

    It is amazing to feel the difference now that I am on the B-12 injections. The burning and pinpricks in my feet are gone. i am able to wear socks and clogs just in time for winter (I thought for sure that I would be spending another winter in sandals). I also feel like I have more energy.

    I have been experiencing some ups and downs. I did great when I was doing daily injections. Then I went to weekly and struggled. I had problems with my feet, nausea, weightloss, no appetite, and vision problems. I ended up doing the injections every 6 days. When I went to 1 a week, I dropped about 8 lbs within 2 week period.

    Luckly, I went back for follow up appt on Monday with the neurologist that found my B-12 deficiency. He was impressed with my pain in my feet down but not with my weightloss and brusing. He said that with my level being this low and having symptoms in between the injections, he increased my B-12 to 2 injections a week for the next 6-8 weeks. Then 1 a week for the rest of my life.

    At this point, they have no clue why I am not absorbing it. They did numerous blood test to check for celiac and PA and they came back normal. The neurologist wants my family dr to do a Shillings test, but i am not sure about it. The funny thing is that I notice when the b-12 runs low. heck, my stomach knows and I can't afford to lose anymore weight.

    alaska_fee

     
    Old 10-29-2007, 12:43 PM   #38
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    When my husband and I went in Saturday morning, the office had changed their mind AGAIN. They did show my dh how to do the shots but don't want me to have another injection until Friday which would be a total of a week between. I am not happy. They know I am NOT happy but what am I to do? This is my GP and I have had to bring them (and fax them) information regarding B12 deficiency myself. I love my GP however I feel that if I have to educate their office perhaps they should be referring me out.

    Friday night I was more tired then I have ever been. My balance was worse too. I was outside talking with my husband and could not stand up straight. I know your symptoms can get worse, or wax and wane between injections but goodness sakes! I felt like a drunken sailor (minus the language but I sure felt like rattling off a good sentance or two).

    At this point, I feel like I need to refer myself out. I have no patience or tolerance. I have four children, work full time and all the vairious activies that go along with a large family. I can not afford to be down like this, its not fair to all of them.

    I find myself getting pretty depressed and beyond frustrated. The GP did say they want labs on Thursday to see if that one shot boosted my number I really don't think it would have. Plus, now that they have given me one shot wouldnt that scew any MMA test they might do now? Or would one week out be okay.

    I think I am calling a neurologist today. There are only two in Anchorage that is preferred on the blue cross list. I hope they can tell me my GP is on the right track. I just don't feel like I can gamble. I am rambling....

    Alaska Free: To bad this board is strictly anonymous. When you hit town it would be great to hook up and compare notes. Perhaps even start a support group. The more research I do the more I realize that this is really something physicians need to be taking a good look at! I am glad you can wear shoes. I don't have to many problems with that kind of neuropathy. I do get the sleepies in my legs and arms, carpal tunnel, terrible balance issues, horrible forgetfullness and foggy/fuzzy thinking. I also have chronic pain in my abdomen. They removed my Gall bladder on the 19th of Sept. Not due to stones but an ejection fraction of 15%. They felt it was colicky and causing my URQ pain. It did nothing but increase my pain 100 fold. Wondering if its a different type of neuropahty...along with my chronic diahhrea

    What wonderful bodies we have.

     
    Old 10-29-2007, 06:08 PM   #39
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    My nurse just called from the GP's office. They changed their mind and want me to inject .3 per day for 5 to 10 days then come in for labs.

    I feel like banging my head against a wall
    My husband said we are paying for their learning curve.

    Ill do the .3....but I also put a call into a MSN here in Anchorage that specializes in neurology and helps quite a few MS patients. Her nurse said she might be able to help me.

    I got a copy of my labs too. On top of my B12 being 150 it also states my
    triglycerides 319 H (30-170)
    cholesteral 204 H (131-200)
    Urea 7 (7-25) Borderline
    Bun/Creatinine 6.9 (7.0 - 23.0) Low

    Do those have anything to do with B12 deficiency?

     
    Old 10-29-2007, 06:26 PM   #40
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Hey all, I had my first appointment today with a Hematologist. They were all soooooooo nice here!! The whole staff was nice and the Doctor was really nice. I spent all but an hour and a half there ..... and it wasn't from long waiting. I first got there and signed in and all of that stuff then they took 3 things of blood from me. They did just a real quick CBC ..... it may not have been a complete CBC, but they ran the blood (the lab is right there at the office), so they ran the blood and by the time I went back to the room and the Doctor came in, they had run some of my blood for a quick work up. Those numbers were pretty much identical to the CBC I had just recently posted here. I think it's earlier in this thread.

    Anyway ... this Doctor spent a lot of time with me, which I liked. He didn't rush us out, he took his time and went over everything .... all of my symptoms, all of my recent blood work etc. He said that my Iron Stores (Ferritin) are all but depleted. My Ferritin was at 10 a couple of weeks ago. I was sooooo happy to finally have a doctor care about Ferritin levels!! He had asked if I noticed any blood in my stool, and I told him I have been looking and haven't seen anything.

    Soooo, since they took extra blood from me when I first got there, he is going to re-test my B12 and see where that is at. It was 172 a few weeks ago. He is also testing me for "Pernicious Anemia". The weird thing though is ... I thought they test you for "Pernicious Anemia" through a Urine Test?? I think it's called a Schilling Test or something like that?? Well, he said they are testing for "Pernicious Anemia" from the extra blood that I had drawn. Can they test for that with a blood tesT?? He also said they are testing like some kind of Antibodies and something to do with Gastric something or other?? They are doing it all through the blood that I had drawn. Does that sound right to those of you that have gone through this ?? I go back next Wednesday to get the results back from those tests that they are running.

    My only other question is ..... does "Pernicious Anemia" also cause low Iron stores?? I am just wondering if my Low B12 and my Low Iron stores are from a related problem?? Or do you think they are two seperate things that we need to make sure the Doctor looks at? I mean this Doctor is nice and all so far .... but I want to make sure I am asking him everything I need to be asking and making sure he is testing for everything he should be testing for. This stuff is all BRAND new to me, so I am not totally 100% sure on it all yet.

    Hopefully you all will re-read this post and can answer my questions, if not I will try posting a new thread about it. But if you all know anything about my questions, PLEASE post what you know. Thanks in advance for any help and suggestions that you can provide to me!!


    Tifferzz

     
    Old 10-29-2007, 11:40 PM   #41
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Tifferez,

    This stuff is so overwhelming. I am still trying to piece it together. I think I finally went through that angry stage with my family dr.

    The neurologist that I saw did the blood test that you are talking about. They are able to check the antibodies through the blood and they may be checking you for celiac (which deals with digestive system).

    I do not know much about PA. I suspect I will be seeing the hematologist after they check my CBC this week. I have been getting bruises on my legs and I haven't hit them or bump them into anything.

    I would ask your dr about your iron stores and low B-12. I would think that it might be connected because B-12 is responsible for blood and nerves. I think that your dr is covering all of the basis. The tough part is the waiting game.

    Jennifer

     
    Old 10-29-2007, 11:50 PM   #42
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    CTSweet,

    I swear we must have the same dr. I have spent the past 2 months educating my dr and it has been frusturating. Luckly, my dr knew to do 1ml shot a day for a week, then 1 a week for 4 weeks then 1 a month.

    The cruddy thing is that my dr was stuck on this dosage schedule and did not take into account the problems that I ran into when I went to 1 a week. It was the neurologist that sat down and listened to me and changed the dosage. Now, my neurologist made the recommendations but my family dr is still protesting it. I got a phone call last week from my family dr requesting to come in for a follow up appt. I suspect that he knows I am mad at him or he got the stuff from the neurologist.

    The off balance stuff is what I experienced when I did the 1 shot a week. On Sunday, I felt the same way and was nausea. I couldn't do a shot till today and now I feel great.

    With the MMA, I would not do it. The b-12 shots will affect the MMA results. It would be a waste of your money. There is amazing book that I picked up that talks alot about B-12 deficiency. It is called, "Could it Be B-12". You may need to go to your bookstore and order it. Worth the money.

    I know that neuropathy can go into your stomach/digestive system. We thought that is what happen when I stopped eating and was always getting nausea. Also, parts of my stomach before I started the B-12 injections were numb. Now, a month after the injections. Let's just say the injections are hurting. Good sign, the feeling is coming back.

    alaska

     
    Old 10-30-2007, 12:21 AM   #43
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Not only do we seem to have the same doctor but appear to be somewhat of the same person! LOL!

    I was going to report happily that my husband is in the wrong field and should be a nurse! I didn't even feel the shot! However now that you reported parts of your stomach were numb....it makes me wonder if my BUTT is numb! (just trying to find SOME humor in this!)

    However, what you have said makes me feel pretty good about our decision to interview a neurologist! I hope I get a call back tomorrow and we can discuss her knowledge of this whole B12 issue!

    I have the print out from a book site that gives an exerpt from "Could it be B12". Its almost freaky you mentioned it. I was planning on taking it to B and N to see if it could be ordered.

    I really appreciate all of your help and insight. This is a sucky road to travel.

    What's the worst symptom for me in all of this? Thinking of things I want to post to you and forgetting them right before i start the sentance. The forgetfulness is the worst for me. I have been living with the stomach issues forever, the pain for almost 8 months, but I just can't get used to the mush brain. I hate it.

    Tifferzs
    I hear so much frustration in your post and it makes me hurt for you because I know exactly what you are feeling right now. I hope you get yours sorted out soon and things get better for you :hug: In regard to being tested for celiac. The blood tests aren't reliable. You can have a positive and not have celiac...and you can have a negative and still have Celiac. The only real tried and true diagnostics for Celiac is the upper endo with LOTS of biopsies. Only a few biopsies may miss the damaged parts. Make sure the doc gets enough samples if you go that route. Also, many Celiac boards on the net will state the real true Gold Standard Celiac test is a gluten free diet of six months or better. I ended up being negative for Celiac in all tests however I am actually "Allergic" to wheat, soy, oats, rye (among five million other foods and environmentals) so if you are negative for celiac in all testing accounts it doesn't hurt to see an allergiest to test for Allergies to certain foods. Food allergies can rip apart and damage your stomach just as much and kill your intrinsic factor (from what I have read so far)

    Carla

    Last edited by CTweet; 10-30-2007 at 12:24 AM. Reason: terrible grammar and spelling and I probobly still missed some things. Nights are the worst for me

     
    Old 10-30-2007, 07:27 AM   #44
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    Hello Tifferez,

    The blood tests for pernicious anaemia are Intrinsic Factor Antibodies and Gastric Parietal Cells antibodies. These are not conclusive tests because only 50 per cent of people who have PA will have IF antibodies. So even if you test negative for IFA, you could still have PA. However, if you test positive for IFA, then it is conclusive for a diagnosis of PA. I know, confusing. Gastric Parietal Cells antibodies can be present in people who do not have PA but another autoimmune disease such as hyper/hypothyroidism.

    My daughter was diagnosed with PA 14 years ago when she was 27 years old and I am still astounded that there is such a lack of information amongst the medical profession about PA and B12 deficiency. There is a Pernicious Anaemia Society based in the UK (note the spelling) that provides a lot of information on PA and B12 and can answer questions.

    When receiving injections of B12, it is essential that your doctor monitor folate and iron levels. B12 needs a healthy supply of folate and iron in order for it to be properly utilized in your body. Yes, pernicious anaemia can cause low iron stores, in fact, it is quite common even to have all three anaemias, being PA, Folic anaemia and IDA (Iron deficiency anaemia).

    Regards,
    Cats

     
    Old 10-30-2007, 12:14 PM   #45
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    Re: Just Got My B12 Lab Results Back Today, Could My Results Be Causing My Symptoms?

    YESSSSSS, catscandance .... I am 99.9% sure that those were the two words that the doctor used yesterday "Intrinsic Factor Antibodies and Gastric Parietal Cells Aantibodies". So, are both of those tests that he is testing me for, do they both test for "Pernicious Anaemia"? Or is one of the tests used for testing for "Celiac's Disease"? Do you know catscandance? If these tests come back negative ..... what is the other tests to do to check for Pernicious Anaemia? Would that be the Schilling's Test (spelling)?? Or is there something else? Ahhhhh, and thank you on answering the question about if Low Iron Stores and Low B12 are common in people with Pernicious Anaemia. That was what I was trying to find last night and didn't really find anything on the web. Maybe I am not typing in the right thing.

    Yeah ... this Hematologist is really nice .... he seemed to really know his stuff. He was explaining all kinds of stuff .... the bad thing was, he is Indian, so once he really got into explaining things .... it was harder for me to understand because I was focusing so much to understand his words and I was saying "what's that" or "huh" several times, but I didn't wanna keep doing that, LOL. But he was very nice and definitely wants to figure out what is wrong with me and help me. I just have to try and focus harder on his words when he really starts getting talking about things because he starts talking really fast once he is explaining things. Now it just stinks waiting. Like I sit here and I am like ...... maybe after a year of trying to find out what is wrong with me, are we going to finally get a real definite answer???? Then I think, if it is this Pernicious Anaemia, then we can get me on the ball with fixing me and getting me back to my normal self and I am soooooo excited for that to happen. Then I also think .... it's been so long and no real definite answers, what if it isn't Pernicious Anaemia then what?? Now I am also scared that what if this test comes back negative and I really do have it, since the blood tests for PA aren't 100% accurate? I wonder if he will do further tests to see if it is PA. It just stinks having to wait a week to find out the results.

    If it is PA, I am wondering if me being on Percocet for so long has something to do with the lack of stomach acid or caused it in anyway?? I am on Percocet for my back (collapsed disc). I have been on medication since like 2000 or 2001. For like 2 years before that .... I was taking 4-5 Tylenols or Motrins at a time just to try to get the back pain to go away but it wasn't helping, so after further testing on my back and seeing Ortho. Surgeons and Neurosurgeons etc, now I have been on the Percocet, which helps ..... doesn't take it totally away, but it's livable. But I am hoping that hasn't done something to my stomach and caused me to lose the stomach acid. That is .... if it turns out that I have PA.

    Also, thank you soooooooo much CTweet and alaska_free for responding .... I do take in everything that you all tell me and I thank you all for taking the time to post things. EVERYONE'S posts help me!! So thank you all very much!!

    Tifferzz

     
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