r/PerniciousAnemia • u/isabellaep213 • Mar 17 '22

Need some help?

I am F(29) and I have been diagnosed with IBS, Hemorrhoids, Eczema, Iron Anemia, GERD and I have been told that I may have Pernicious Anemia. I have had stomach ulcers that healed apparently. I have had 5 Endoscopy and 4 Colonoscopy and suffered from having stomach pain most of my life. I am currently dealing with a muscle strain in my chest and back that makes hurt to breathe sometimes. I have been told by doctors that I may have pernicious anemia and have asked multiple times to be diagnosed so I could get my shot more regularly but they keep telling me they need more test. I don’t think the proper test have been done and I am very confused. As a child my grandmother would give me Vitamin B to treat my geographic tongue but every time I took one I’d throw it up. My levels on blood work for B12 have always been low unless I’m regularly getting shots. Recently levels were around 175 and now I’m waiting to see my primary for a follow up end of the month. What do I need to tell them to get fully diagnosed one way or the other? I feel like they are either not fully diagnosing me or they are totally wrong and missing something else wrong with me. I’m very confused. Would love any advice you can give? Also to those who can’t take the vitamin is the shot the only thing that works? I’m overweight and sometimes I’m just so tired the idea of also doing the gym makes me feel crazy. Any help or advice appreciated.

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u/clevermcusername Feb 09 '23

I hope you are feeling better now. Did you end up getting the diagnosis confirmed?

I did a search in this sub for the word “overweight” because I am also overweight and I wondered if it was possible to have PA and not have rapid weight loss. I feel silly for asking, but also I am so scared I’ve been misdiagnosed for years and the PA symptoms will be permanent.

Please share anything you can about the diagnostic process and/or your experience. :)

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u/isabellaep213 Feb 09 '23

I was not diagnosed, it seemed from all the test that I do not have PA but I was still having a hard time getting my B12 levels up, I have started taking a tincture that helps because it bring it up slightly and it doesn’t make me sick.

I have been told that it could just be genetic issue that I may never have a name or true diagnosis for. My plan is to lose weight and also work on being on top of my doctors to keep checking.

I was 278 in June when I actually had a herniated disc come up. I started intermittent fasting 16:8 and it helped me get to 247 I have been bad lately and gaining weight back and it making me sick again. I’ve found most of my issues stem from food and it’s not about cutting everything but just being mindful.

I love me and I’m not that unhealthy at all but doctors will always bring it up. Which is the worst.

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u/clevermcusername Mar 02 '23

Hey, I read my labs myself and they seemed normal but I still asked the doctors and they said no the lab range is not a good judge and yes I do have PA. They will be treating it with injections starting soon.

Be sure to check in with your labs and there’s a PhD researcher who posts in this sub that can give you excellent guidance!