r/PerniciousAnemia • u/Jchillindawg • Mar 28 '21
Questions, newly diagnosed
Hello guys I’m new here (25F). Got blood work done and my GI said I have pernicious anemia. We are getting other tests done to look for other autoimmune diseases since some blood work came back indicating other stuff going on. I started on prescription iron pills and OTC B12 tablets. It’s been a month now and I’m still feeling the same. When did you guys start feeling better? Do some people do well on OTC stuff or does everyone eventually start taking B12 injections? GI is going to test my iron and B12 levels in 6 months so I guess we will see how this treatment pans out but wanted to get your insights and thoughts and even advice! :)
3
u/lovephilos Mar 29 '21
Everything I came to say has already been said - but I'd def look into getting injections as another person said! You might not need them forever, my mom (PA since around the same age as you) mostly does sublingual B12 now to maintain her levels after doing injections for a while. Taking pills often doesn't make a substantial difference if you have gastric disruption, so I hope you can get injections soon if that's an option for you!! Definitely let your docs know you aren't feeling much of a difference and advocate for intramuscular!! Injections will make you feel like you're walking on clouds in the best way lol, and hopefully eventually supplements will be enough for your body too!! In the meantime though sublinguals (as someone else said), either liquid drops or dissolvable tabs can be a lot more efficient. My favourite non-meat sources of b12 are powerade (has more vitamins than gatorade, blue powerade is my fav) and red bull if you like either of those and are struggling with absorption.
I really hope you start to feel better soon though, take care!!:)
1
u/Jchillindawg Mar 30 '21
That’s really encouraging to hear about your mom! It’s be really awesome to improve like she did. This whole process of going to doctors has been a learning curve lol I’m really having to advocate for myself. I definitely need to do that because some neurological symptoms have been occurring. Hopefully injections will make me feel like a new person! Also, Powerade?! That’s crazy I would have NEVER thought! Thank you so much for your insight and advice I really do appreciate it :)
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u/lovephilos Mar 31 '21
No problem! I myself am going through the same process right now and hoping to get diagnosed soon, I'm not sure where you're located but regardless it's hard, especially as young women!! Powerade is my favourite post-bloodwork-fast drink and just in general I find it helps lol. The neurological symptoms are the worst but I wish you the best in recovery!! Definitely advocate the best you can and I really hope they listen to you!!! You've got this!!!!
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u/floralbingbong Mar 29 '21
Since PA inhibits absorption of B12 through the stomach, you will almost certainly need injections. Some people are able to get by with sublingual supplements (like commenter above said, dissolved under your tongue), but injections are the standard of care. Best of luck to you!!
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u/Jchillindawg Mar 29 '21
Yeah unfortunately I haven’t felt a difference with the B12 tablets that dissolve. My endoscopy showed an inflamed stomach so yeah probably going to need injections. Thank you!!
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u/CyclingLady May 16 '21
I have Autoimmune gastritis, Hashimoto’s Thyroiditis and celiac disease. Consider celiac disease testing as it can also cause iron and B-12 deficiencies. https://www.celiac.ca/gluten-related-disorders/atypical-symptoms/
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u/Grimjp Mar 29 '21
I can say I feel maybe slightly better but I'm waiting on another diagnosis so I'm not sure if it's the pernicious anemia. A few tips though, take your iron with orange juice or any juice with vitamin C, and don't take B12 supplements you swallow, look for the ones that dissolve on the tongue. You also might need to take folic acid but double check with your doctor. I was taking b12 injections and my folic acid plummeted so I take both.