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  • Pernicious Anemia

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    Old 03-21-2008, 07:56 PM   #1
    sleepyone's Avatar
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    Location: Eureka, KS, USA
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    Pernicious Anemia

    I started having problems in April '07. I had a very sore throat. The pain was far down in my throat and it hurt to even swallow a banana. Everytime I ate something it was extremely painful to swallow. It felt like my throat was swollen and the food was like a huge ball going down. After a couple of weeks, I went to a doctor. I have seasonal allergies and was told that my throat was probably irritated by post nasil drip. I was prescribed some allergy meds and sent on my way. My sore throat did seem to get better briefly, but it never really went away. I decided to go to an ENT. He spent about 5 minutes with me. He didn't use any special instruments, just had me say "ahhh" and looked down my throat with a light. He said it looked perfectly fine. I told him that my pcp said she thought it was post nasil drip. He said she's probably right and to continue with the meds. My sore throat continued and I began to experience other symptoms. I was very tired all the time, I began having trouble swallowing pills. I had never in my life had trouble swallowing pills of any size. It was like I "forgot" how to swallow them. I would drink a whole glass of water and pills still wouldn't go down. I would have to eat a piece of bread or something to make it go down. I was often short of breath doing the slightest bit of anything. Just walking up my stairs left my heart pounding. I hadn't been doing my exercises and just thought I was really out of shape. I would get very dizzy and light headed, especially when I bent over. I have a geographic tongue that would flare up about once a month, but during this time, it would never go away. In June I had a very dizzy spell while standing upright. I became constipated overnight and was noticeably clumsy. I noticed it more in the morning getting ready for work. I would often drop my hairbrush or hairspray. The clumsiness and constipation lasted for about 1 week, then went away. I had strange muscle spasms in my back that I had never felt before and extremely painful leg cramps. I googled all my symptoms and had self diagnosed myself with MS. I went back to my pcp in August. She told me she didn't think it was MS, but offered to refer me to a specialist if I wanted. She ordered some blood work, but NOT a CBC. The only thing abnormal on the test was low potassium, which is what she thought caused my leg cramps. She told me to start taking potassium.

    Finaly, in Dec ('07) I went to a different doctor with my sore throat. The doctor wasn't in, so I actually saw his PA. I mentioned that I occasionally had muscle cramps in my legs and back. He looked at my eyelids and said the magic words: "You might be anemic". I gave some blood for lab tests and went back to work. About 30 minutes later, his office called and said I needed to go to the hospital immediately for a blood transfusion. I said "No, you must have the wrong person, I just went in for a sore throat". She my hemoglobin was so low, that their instruments couldn't read it, so they sent it over to the hospital lab. My hemolobin was 5.1. (normal for females is 12-16) My iron was below 1....virtually non-existant in my body. (Normal iron is 60-170) He said I was walking around with less than half the amount of blood in my body than I should have. I went to the hospital right away. I received 3 units of blood, which brought my hemoglobin up to 9.0. My b-12 was also very low, but I don't remember what it was. I was diagnosed with pernicious anemia, which is caused by B-12 deficiency. I now prescribed monthly B-12 shots.

    I had gastric bypass surgery almost 4 years ago. All the doctors and specialist I went to were aware of this. I had been taking a multi-vitiamn and protein drinks after my surgery, but had become lazy about taking them. I knew the surgery could cause malasorbtion problems, but it had been 4 years since my surgery, and I hadn't had any complications what so ever. I thought I was doing just fine. Now I just feel really stupid for not folllowing my surgons advise on aftercare.

    My blood transfusion was last Dec. I have been taking 150 mg of iron 2x a day and monthly B-12 shots. I had bloodwork done in Jan. and my hemoglobin was 10. I have begun to get tired and out of breath again, so the day before yesterday, I had my new doc. run some tests. My hemoglobin is down from Jan, it's now 8.6 and my iron is 6. I'm waiting for my ferritin and B-12 results. My B-12 was low, but ok in Jan. He wants me to start taking my iron pills 3x a day, instead of two, but before I start doing that, he wants me to stop taking them completely for about a week, then give a stool sample to make sure I'm not losing blood in my stool. If I give a stool sample while taking iron pills, it sometimes caused false postive results. I did more research and found out about iron infusions. It sounds like I could really benefit from them. I called my doc and asked about them. He said he wasn't very familar with them, he thought they stopped giving them a long time ago because they can cause sarcomas???

    I'm very concerned about the long and short term affects of low iron levels. I would appreciate any advice on this subject. I've made an appt with a gastric bypass surgeon in my area because I have recently moved, and my surgeon is over 800 miles away. I don't know who else to turn to. I live in a very small town, where none of the doctors (there's only 2 here) have any experience dealing with someone whose had this surgery.

    Sorry for the long post, but I felt I needed to include details to get the best advice. Thanks for reading!

    P.S. I forgot to mention...I haven't had a sore throat since my blood transfusion!!!


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    Old 03-21-2008, 08:52 PM   #2
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    Join Date: May 2007
    Location: FL
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    Re: Pernicious Anemia

    What a story--I really feel for you! Many people with gastric bypass end up on this board. Most receive iron IV infusions, and there are several types. I know you said that you were not taking supplements as you should. It takes years for the B-12 to deplete and also the same with iron in many cases. This would have happened because of the surgery eventually, I do believe. Although the stomach is bypassed the gastric juices (with some types of surgery) still go into the intestines and meet for absorption. So stomach acid is still there. I know there are different procedures. But that is the way my sisters works. In your case however, with PA you are missing IF which is necessary for absorption. Anyway, you just don't absorb enough to keep up with the demands on your body. If you still have periods this can also contribute, any form of blood loss can. I believe that the only way you are going to be able to keep up your ferritin and iron levels will to be through the use of IV therapy from what I know about it.

    FYI--stool samples do not show intermittent blood loss. Good luck to you. Keep us posted on your results. FLFLOWERGIRL

    Old 03-21-2008, 09:21 PM   #3
    sleepyone's Avatar
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    Re: Pernicious Anemia

    Thanks for the advice, FLFLOWERGIRL! I'll keep y'all posted.

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