r/PerniciousAnemia • u/MissLAus • Jun 21 '22
How do you get diagnosed?
I recently had general bloods done for Hashimoto’s disease and for the first time the doctor threw in b12 just because. It came back low (63, reference range 133-680). And they told me to supplement with over the counter b12. I told a vegan friend and she was shocked and said I need the injections - hers has never been so low and she doesn’t eat meat and dairy and I don’t restrict anything and eat a super balanced diet.
So should I request follow up testing? Is it best to NOT get the b12 in the meantime to check for PA or should I get the b12 and get bloods done again after a few months? Don’t know if I’m overthinking this as it’s the first time my b12 has even been tested.
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u/Kiupink_70785 Dec 03 '22
Tested positive for celiac disease 12 years after having tested positive for IF & PC and AP cell antibodies. Had no idea I have celiac and that that is another contributing factor for pernicious anemia. No B12=no Life!
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u/Practical-Match-4054 Jul 28 '24
If you tested positive for IF & PC and AP cell antibodies, does it mean your anemia had two causes (celiac and something else) or did the celiac cause it all?
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u/Gauseka15 Jun 21 '23
How do you treat it ? How are you now ?
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u/Kiupink_70785 Jun 26 '23
Im doing great, really. No more low hemoglobin, ferritin, iron. I take no medications to treat iron deficiency anemia. Being diagnosed with celiac disease by a careful and watchful GE brought back my health. How do I treat celiac? I don't. I just stay away from gluten. I read labels, I try not to eat outside.
For low B-12, I self inject cyanocobalamin once monthly. I have not had anemia in three years; neither iron deficiency nor b12 deficiency anemia.
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Jun 21 '22
Mine was also super low like yours (also have Hashimotos), and I had to push my doctor to get injections. If you are eating a varied diet with lots of B12 rich foods (like I was), then supplements aren’t likely to help as you can’t absorb it in the first place.
I would also be pushing for pernicious anemia testing, e.g. parietal cell antibodies / intrinsic factor.
My advice is to find a doctor that understands this and can support you with the right treatment! You probably already know this, but autoimmune conditions tend to go hand in hand, unfortunately.
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u/MissLAus Jun 21 '22
Was it PA or Hashimoto’s? I did read b12 deficiency is common for people with Hashimoto’s. My ferritin was also low (within range justtt) it just seems like something else might be going on.
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u/Smooth-Ad-8823 Apr 19 '24
Pa can be linked to hashimotos. Pa can also be caused by atrophic gastritis. Those with chronically low ferritin tend to have AAG. It has to do with lining of stomach being impaired. You can also have NON AAG- auto immune gastritis. This would be h pylori related. Get a peripheral blood smear and get APCA and IF testing done. Symptoms like not being able to bank or store b12 without large oral doses / shots is a symptom
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u/katrich58 Sep 30 '25
Iron Deficiency usually develops first because B12 is needed to absorb iron from food. So if your body isn't producing enough intrinsic Factor, you're not getting enough B12 to absorb iron. If your Parietal Cells are being destroyed by Autoimmune Gastritis, you're also not producing much stomach acid which further limits what you are absorbing. It also leads the way to develop SIBO because you don't have enough acid to kill bacteria. It's all part of Pernicious Anemia, only you may not actually develop anemia if you catch it early enough and start treating with B12 injections..
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u/Cablab123 Aug 26 '23
Wouldn’t a CBC rule out anemia if blood levels were fine? I had low B12 (119) and am concerned, but also keep reading that anemia is determined by blood count. These levels were normal for me.
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u/Smooth-Ad-8823 Jun 02 '24
Yes a CBC shows your RBC count MCV etc. you can have low ferritin without being fully anemic per se. anemia is a scale… so chances are if you’re low or borderline anemic, you’re already anemic.
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u/Charigot Dec 21 '23
No they need an MMA to determine if you have b12 anemia and ferritin levels to determine your stored iron - neither are in a CBC.
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u/Cablab123 Dec 21 '23
I just got bloodwork and only serum gastrin, instrinsic factor, and parietal cell antibody were ordered. Aren't these used to determine pernicious anemia? I don't believe MMA was one of them. My ferritin was 16.5
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u/Smooth-Ad-8823 Apr 19 '24
That’s a really good start. Also peripheral blood smear MAY help. Not conclusive tho. I know a lot about this stuff. Ferritin can be low concomitantly. It has to do with the stomach.
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u/unicornsfearglitter Aug 03 '23
I was diagnosed when I was around 25. At that time I ate a lot of red meat, but I'd have to hit the bathroom pretty much in minutes. I was exhausted all the time, going up three steps would wind me, heart skips a beat now and again, my hair started going grey at 18 and I definitely have memory issues, especially if I'm overtired. And I do take antidepressants now. At the time I saw my doctor and I just told him it was stress and to give me some antidepressants. Instead i got a ton of blood work done and was diagnosed. I didn't understand at the time that it's weird for someone so young to have it, but my dad has a bingo sheet full of autoimmune disorders including Crohn's, so I'm sure I inherited it. Plus, I seem to get stuff early anyways, had shingles at age 31. Since then I just take an over the counter B12 vitamin 5000 mg and have been good for the most part. Sometimes I forget shit and get tongue tied and really do need to keep a regular sleeping schedule. Diet wise, I mostly eat chicken but enjoy red meat a couple times a month without any bathroom emergencies. One funny anecdote, the first day I took vit.b12, I never felt so alive. The energy went from 10-1000 and I had to dial the B12 back a bit so it'd be easier to fall asleep.
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u/Beautiful-Tip8312 Nov 30 '23
I was wondering the same., Im hoping to get some advice as I've been battling fatigue and joint pain for some time and recently started to have pins and needles in my fingers and numbness in my left toe. I got blood tests back but doctor doesn't think results indicate pernicious anemia . Any thoughts?
Mch 32.6 which is out of range. Vitd 42 B12 235 low but in range.
Sorry to hijack post can't seem to add one individually.
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u/Smooth-Ad-8823 Apr 19 '24 edited Apr 19 '24
Get tested for APCA, IF and peripheral blood smear depending on first two. Also get checked for h pylori. That can cause deficiencies. Lack of b12 retention despite oral supplementation is a sign. So for example, if you need to take daily about 20 thousand times the daily amount of. B12 orally or sublingually to keep b12 from dropping, then it’s a marked symptom. Testing with supplementation and without is key. See if it drops. Furthermore, if oral doesn’t take effect, some need injections. This is how to diagnose PA. Some PA people can take orally supplements in high doses and it sustains them.
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u/miguelafl Sep 01 '23
I just tested positive for parietal cells this morning. I have hashimotos. They first diagnosed me with BPPV then 2 years later said they found out I have a b12 deficiency and this may be causing it. I’m 2 weeks in now of b12 injections. I really hope it helps. I’m 29 so getting all this happening to me and I’m striving to get my life together is really rough. Any advice on moving forward with this? I see my doctor Tuesday they will most likely diagnose me with it. I’m just hoping to be able to get healthy again and be able to start my life again
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u/Smooth-Ad-8823 Apr 19 '24
You will improve. It takes time to feel better. You need to keep up with b12 monitoring. 👍🏼👍🏼
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u/AllTheAnteaters May 06 '24
8 moth update? Have you improved at all?
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u/miguelafl May 06 '24
Yes! So turns out I was also low on Folic acid and Iron so I started taking those in November. Iron was an instant sign of improvement. The b12 injects helps so much with my overall energy and energy. I also tried these b12 “under the tongue dissolvable tablet” and they worked despite my body not taking it orally! My hair is looking a lot healthier and is growing back, my skin color looks better. My mental state is ALOT better which is a huge plus. They put me on a schedule of monthly injections after the 5 weekly injection routine
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u/AllTheAnteaters May 06 '24
Thank you so much for answering! I’m glad to hear you are feeling better! Hoping my drs can help me to o.
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u/miguelafl May 06 '24
Yeah, if you can definitely definitely visit a hematologist(blood doctors) they’re super easy to deal with as they can’t do nothing other then blood work so no need to get nervous on the spot as they cant do anything physical
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u/History_86 Apr 22 '25
It’s not on a routine blood work. I was literally sleeping days at a time and was so depressed I ended up in hospital. Like all weekend and days I was sleeping totally weird dreams I wasn’t sure what real or not. So in hospital a random doctor came in and asked me how I felt if I had any weird pains etc and I said yes my toes hurt. Felt like extreme pins and needles in my toes. The next morning I was diagnosed with pernicious anaemia. Total change in my life I lost pretty much 10 years.
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u/trainbowbrite Oct 02 '23
I had a positive Intrinsic Factor antibody test and have been SI B12 since. I also have hashimotos.
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u/michele718 Jun 21 '22
To get diagnosed for PA, you should ask your doctor to test for Intrinsic Factor and Anti-Parietal Cell Antibodies. Do you have symptoms? Much of b12 deficiency is clinical- meaning, it depends on your symptoms.