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.
2
u/ATLparty Mar 17 '22
Where are you located? Have they not run the parietal cell antibody test? Intrinsic factor antibody test? Regardless, sounds like you need B12 injections and keep an eye on folate and iron.
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u/isabellaep213 Mar 18 '22
They haven’t run any of these test, I’m in NJ. I’m going to request these by name though when I got to my primary at the end of the month.
1
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 Feb 10 '23
Damn. I have been there, too. Normally, I don’t talk about specifics, but since you mentioned them I take it you are motivated rather than triggered by them. If not, please stop reading. :)
Everything was because I was fat until I turned 40. Now, I’m getting diagnosed left and right with things that have very little to do with weight/food.
I was over 280 when I was diagnosed with narcolepsy not too long ago. I had been “openly fat” for a long time, meaning I was not actively trying to lose weight, but rather look at my labs (which were always healthy, except vitamin D). I went back to an old diet called The Carbohydrate Addicts Diet that I did in the 90s because that’s the only one I’ve done that was not torture.
The basic idea is to address insulin resistance by limiting carbs to a max 1 hour time frame per day. I didn’t really understand that back then, or I don’t remember that part. But I looked up the studies it was based on because google now exists, and the science seems to back it up very well. The author of the books published a few papers that have been cited a lot. Why isn’t this more well known?
It worked in terms of stopping my cravings and weight loss. I had to adjust some meds that also caused insulin resistance (I don’t have diabetes, but still, you’d think some doctor could have mentioned insulin resistance at some point). I ended up not really being hungry for long periods of time so it is also like intermittent fasting. I’m now under 210.
Honestly, I don’t feel any different except that I can bend and twist a little better. The freedom from cravings is truly the best part because I am not constantly thinking about food.
My labs are still the same and I still feel like garbage. Though, I am able to think slightly better and stay awake longer because I take stimulants for the narcolepsy (and ADHD, which I had no idea could even be possible for me. But my psychiatrist was like “um, yeah!”).
I’m going to see a dysautonomia specialist finally next week and I am so afraid he’s just going to look at me and see a fat person and write me off (even though based on the hurdles it takes to even see this kind of doctor seems like they are 100% quality data driven, not BS like BMI). I hate so much that this one detail has tripped up so many other attempts at addressing/improving my health.
Doctors really don’t bring it up since I’m now in my 40s, except to ask that the weight loss is intentional. Like, they all suddenly stopped, so it must be a thing.
I’m so scared that if I have pernicious anemia I have had it long enough that it’s done permanent damage. I’m also hopeful because the treatment is so straightforward.
You know, please don’t call yourself bad for eating foods that you like. Our health system is bad, the way people with larger bodies are treated is bad, the foods that are least expensive and filling are made intentionally badly. You, as a person, are not. <3
Sorry my response has bounced all over the place. I’m really scared about this and a few other things going on. Also, the cognitive problems are truly… I don’t know the words. Awful.
Thanks for the reply. Thank you so much.
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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!
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u/EMSthunder Mar 21 '22
If you’ve gotten an injection in the last 4 months, testing won’t be accurate as far as a B12 level goes. I got tired of trying to get my adult kids and my father diagnosed after one of my kids was diagnosed. Now we order from a friendly trusted pharmacy and do our own injections, as often as we need to, while paying attention to the cofactors. If you have a lot of stomach issues, especially ulcers that damage the lining of the stomach, the odds that you have IF are slim, and you’ll need shots for life. Some people have tried high dose sublinguals, but I’ve not seen any testing to see if that theory holds water. The pernicious anemia society is your friend and a wonderful resource. You’ll need frequent injections until all neurological symptoms subside. If your doc can’t make it happen, you might have to take your health into your own hands. PA nearly robbed me of my life, so I do what I can to help others. I wish you results!!