Pernicious anemia - what to ask?

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I've been dealing with symptoms of pernicious anemia for a long time. A couple of years ago I was diagnosed with celiac disease, and cutting gluten out of my diet solved a few of my medical problems, but not all of them. I kept hearing "give it more time to heal" when I went back to my doctor countless times because I didn't feel well, but after two years my remaining symptoms are getting worse, not better.

Over the last few months I have declined a lot. I have numbness and tingling in my hands, a dull pain in my feet when resting, clumsiness, headaches, worsening memory problems that are beginning to really scare me, lack of concentration, ringing in my ears, feeling like I'm stupid, depression/anxiety, balance issues, diarrhea. These things are causing problems with my life, from getting bad reviews at work which I never used to have, to just not being able to play a card game with friends.

I had blood work done four months ago, and it showed that both my B12 and Folate were borderline low. This is the first time I had those tested. My platelet count is always high, and my MCH count is always low. I'm not sure what that means. Before being diagnosed with celiac my white blood cell count was sky high, but is now within normal levels.

I'm sure that my problems stem either from B12 or MS, as they are the only things I know about that match my symptoms. Both are also related to celiac.

I'd like to know if having borderline levels can still indicate pernicious anemia. Also, what tests/advice should I ask from my doctor? Is there anything else I should tell her or ask?

Thanks!

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9 Replies

  • Posted

    Forgot to mentioned that I also have insomnia, fatigue almost every day, and difficulties with language. I'll use the wrong word a lot, or will be thinking one word and type another, or I'll speak my sentences out loud with the words in the wrong order. That is getting much worse, and it's so awful knowing that people hear me make these simple mistake and think I'm stupid. I tot through graduate school with perfect marks, and now I feel like a moron.
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  • Posted

    Hi Gemma how often do you have your b12 injections? I have had pernicious aneamia for twelve years and have had a lot of these symptoms get worse lately. Have been tested for celiac twice but negative , but have cut out gluten cos know I'm intolerant because I'm ill when I try to eat it. I too forget things and feel scared about it .I can be talking and forget what I'm talking about. I find this happens more when I'm due my injection.
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  • Posted

    Kazy - I haven't had any injections yet. My doctor didn't seem that concerned when my levels were borderline low a few months ago (B12 was 250, folate was 4.0), but my symptoms have done nothing but get worse since then. I have an appointment next week, and I'm going to write down every single symptom (I have a whole page full) and shove it in her face. lol Maybe then she'll pay attention. She keeps trying to tell me it's all caused by the celiac, or it's "just" depression (like depression isn't a big deal). She told me to see a therapist. Urrrm..how is a therapist going to fix my blood work!

    I was the one who first suggested celiac to her, and she wasn't even going to run the tests until I brought it up. I'm trying to learn more about the PA tests so I can suggest those too, because she sure isn't going to think of it on her own.

    I've been unwell for years, have seen so many doctors and specialists, and I haven't met a single one who gave me any hope. It's all so frustrating.

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  • Posted

    hi Gemma that's not good ,make sure you tell her everything. I don't think gps know enough about PA. Definitely think celiac is connected to b12 deficiency because this is what's showing for me and my sister is celiac and they found her b12 levels to be low gave her injections a few times but then stopped.she is trying to fight to get regular injections too. When I'm feeling low and getting symptoms before my injections I take methlcobalamin which are b12 sublingual supplements. These go under your tongue and get straight to your bloodstream they definitely help me. Normal supplements do not help has they go into your stomach and PA is when your body can't absorb b12. I get these online at a company called source naturals and have done for 12 years. Hope you soon get sorted, know how you feel. Let me know how you get on.
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  • Posted

    I called the doctor's office this morning to try and schedule some blood work before my appointment later this week, but the bitchy office secretary told me I'd just have to wait until I got there, and wouldn't even ask the doctor's opinion. Every time I leave the doctor she says "call me and let me know if anything gets worse, and contact me if you need anything" but I can't contact her without actually making an appointment to see her because of her office staff. I keep thinking I need a new doctor, but I've been to so many and none of them are any better. I even saw a gastroenterologist and he didn't even hint at celiac being a possibility before I was diagnosed with that, and referred me to a cardiologist when I didn't even have any heart symptoms. He just wanted to pass me on to someone else. That's the impression I get from all of them "get out of my office and go bother someone else."

    Another problem is the pushing of medications I don't need. I swear half of these doctors are getting perks from big pharmaceutical companies to push their drugs. I've been put on so many different drugs, and most of them did nothing but leave me with side effects. It's like the doctor is trying to diagnose me based on the medical samples she has. Last time I went my doctor gave me a prescription for a new pill, and it did nothing for me at all. A few weeks later my husband (who is diabetic and has none of my symptoms) was offered the same medication for no apparent reason. He declined. It felt like a use car salesman was trying to get us to buy-in. The medical community should be ashamed for such practices.

    I just want answers at this point. Whatever is wrong with me, it has already cost me jobs, time with friends and family, and years of my happiness.

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  • Posted

    It's hard when they just won't listen. I have the same problem with doctors. After I was diagnosed with PA I looked up everything about it and I believe tablets that I was given for weeks on end caused me to get it. I have never had any tests too see why . There is a pernicious aneamia forum website that has a lot of info on and lots of people you can talk to.

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  • Posted

    Thanks Kazy. Can you message me where that forum is?

    I've had a really bad day. Pins and needles from my hands and feet up to my elbows and knees.

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  • Posted

    Sorry to hear that xx it's the pernicious aneamia societyx
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  • Posted

    Hi i'm not sure if you'll read this as the discussion was a while ago but ask for a blood test for antibodies I had that and it showed i had antibodies that can cause pernicious anemia which is rare as im 23 but it's worth checking out smile
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