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  • Jake_George
    Participant
    Post count: 120

    Many of us with Graves have low B-12. I have been on the shots for about two years now. It is a small needle and is given in the leg or belly, in my case.

    It has helped quite a bit. It is also known as pernicious anemia.

    belldandy112
    Participant
    Post count: 77

    Jake,

    Thanks for your response. This is one side-effect that was never mentioned to me before. Did you ever try sublingual B-12, or did you go straight to the shots? I’ve read mixed opinions about the Sub-l tabs and shots — some say they are equally as effective, and others say that only the injections or subcutaneous B-12 is the way to go. Opinions on that?

    "Pernicious." I don’t like that word very much.

    Thanks again —

    Melissa
    Austin, TX

    belldandy112
    Participant
    Post count: 77

    Hi.

    About three weeks ago, I went to my endo because I felt certain that I was about to go "hot" again — very tired, unable to sleep, heart palpitations, easily "winded," and the dead giveaway, losing strength (e.g., winded when running, unable to press normal weight levels). This is typically what I notice first before everything goes to heck in a handbag.

    My levels tested in the low range of normal. BUT … my endo told me that I had B-12 malabsorbtion, and that this could cause "very serious problems." He put me on sublingual B-12; and if that doesn’t get me back within range, we’ll do injections. I’m at a loss as to how this could have happened. My diet is well-rounded, except that I’ve seriously cut back on sugar. I’m not vegetarian/vegan. My endo was going through a serious busy time when I was at my visit, so I don’t feel that I got a lot of quality time with him to ask more questions. I’m being retested after a month of sub-l B-12 (at the end of this week). I am taking 5000 mg a day, which seems like a lot. But … it really does work. Major improvement

    My concern is what is causing the deficiency to begin with — is it the Graves? Does anyone else have this problem, or am I just lucky? <img decoding=” title=”Sad” />

    Melissa
    Austin, TX

    Jake_George
    Participant
    Post count: 120

    I went right to shots. My b-12 was so low by time they found it that shots were the only options for me at the time. It is easy. Once a week a quick shot in my leg. The needle is less than a quarter long and very thin.

    Piece of cake.

    RhondaG4
    Participant
    Post count: 127

    Jake,
    Question for you….last time I was checked my folic acid was low but b 12 was ok..but I read somewhere that if you take folic acid you can become low on b 12. My mom takes b 12 shots. Is this something else I should keep an eye on? Thanks Rhonda

    DianneW
    Participant
    Post count: 292

    Pernicious anemia isn’t caused by Graves’ Disease. It’s an entirely separate autoimmune disease. You should ask your endo the next time you see him if you do indeed have this disease or if there’s another reason you have a low B-12. No one here can diagnose you for that.

    It is more common for those of us who have Graves’ Disease to have other autoimmune diseases, so if you do have pernicious anemia, that would be the connection. I have at least two other autoimmune conditions. One is an autoimmunity to my platelets, causing a low platelet count. The other is called Sjogren’s disease. I have antibodies to my nerves, which could be part of the Sjogren’s or a separate condition.

    Most people who have low vitamin B12 can increase their levels by taking B12 supplements or by eating more foods that contain B12, but with Pernicious Anemia the problem is that specialized cells in the gut that absorb B12 are damaged and can’t absorb B12, so it doesn’t matter how much extra you take in. You then have to have shots in order to get enough B12. Usually patients with Pernicious Anemia will have severe symptoms, such as tingling in hands and feet, or even dizziness or fainting. There are other symptoms; I’m not familiar with all of them. My grandmother had this and those were some she experienced.

    belldandy112
    Participant
    Post count: 77

    Dianne,

    Thanks so much! I am really disappointed that my endo didn’t take the time to talk with me about this. I suppose that if there’s no change in my B-12 levels with my next labs, I’ll go for the injections.

    I’m not sure if this is in any way related to autoimmune diseases, but I have crippling allergies. Hives, difficulty breathing, continuous post-nasal drip, etc. There’s something always blooming here that makes me nuts. And because I can’t take shot therapy (because I might have to go back on Atenonol (sp?) in the future, it has to be managed with medications. Most of which have their own little side-effects as well, and honestly, nothing completely gets rid of the symptoms.

    I am really concerned, because I have never had this show up on my labs, and my diet should be very good — I eat plenty of red meat and B-12-rich foods. If I have to take injections, no big deal. There are far more painful things to endure! <img decoding=” title=”Smile” />

    Melissa
    Austin, TX

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