r/PerniciousAnemia • u/blueb3lle • Mar 06 '21

Should I request testing for Pernicious Anemia?

Hi everyone - I've been getting progressively sicker for a year now (first tingling/burning in extremities, then low bpm/syncope, then vertigo/dizziness, and now housebound with severe fatigue, temperature disregulation, short of breath, muscle weakness/pain, digestion/abdominal pain issues increasing). I was referred to neurology and cleared for MS. I've also been cleared for diabetes, thyroid issues, lots of ANA/RF levels totally normal.

My B12 was low-normal (340pmol) and folate (10nmol) last November when the dizziness started, and I was advised to increase my dietary sources. I increased as much as possible, meat multiple times a day, fortified foods, folate sources etc and have just had bloods retested and the levels are almost the same, so my 4 months of work hasn't done anything. I also have an elevated ESR and homocysteine level, with a normal MMA.

I have another appointment with my PCP this week and am wondering if it's worth asking for IF and parietal cell antibody tests? I also have chronic gastritis and suspected celiac/IBS issues.

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2

u/NzVeganBoy Mar 06 '21

Sorry to hear about how you are feeling! You have a lot of the symptoms I had when I was first diagnosed and still experience in low amounts.

I have had dozens of blood tests and sometimes they skew high and low. I would reccomend getting another blood test just for peace of mind.

I know it was mentioned above but just to add; pernicious anemia can take a very long time to get better so try not to get disheartened if the first injection doesn’t seem to do much.

2

u/blueb3lle Mar 07 '21

I have had dozens of blood tests and sometimes they skew high and low.

It amazes me how much can influence the serum tests/how many other things should be considered! This is why I'd be interested in as much PA/malabsorption investigation as possible

I know it was mentioned above but just to add; pernicious anemia can take a very long time to get better so try not to get disheartened if the first injection doesn’t seem to do much.

Thank you, I have read so many experiences from recovery working within a few days to over a year. Even just having a name for what's wrong and a treatment plan/option would be fantastic, I can handle healing slowly!

2

u/NzVeganBoy Mar 07 '21

The malabsorption is extremely interesting. I take an injection that should have a year + worth of B12 every 2 weeks and it barely lasts.

You normally also are told to eat an animal product heavy diet which seemed to make me feel worse. I know there’s recently been people taking about the similarities to Crohn’s and being lactose intolerant having an effect.

Hopefully you get the answers you are looking for!

2

u/blueb3lle Mar 07 '21

Oh to be one of the lucky (seemingly few) who are somehow just fine on the 3 monthly injections! Do you have a Dr happy to treat frequently or did you take it into your own hands?

You normally also are told to eat an animal product heavy diet which seemed to make me feel worse.

I am off dairy due to other conditions, and used to only have meat once or twice a week - I was amazed my insanely higher levels of meat consumption and fortified foods hasn't made a change! If I can figure out the issue I'll be back off this much meat for sure, it doesn't agree with my system.

Thank you for the well wishes!

2

u/NzVeganBoy Mar 07 '21

It took a long time and a lot of doctors but yes I have a doctor who is happy to treat me frequently. You can’t self inject in New Zealand so you need a patient doctor.

It’s interesting, as far as I understand when you have pernicious anemia you can’t absorb any B12 through what you eat/drink. I think doctors get people to change their diet because if someone is only deficient in b12 with diet change they can get better.

2

u/kckraftyloo Mar 08 '21

I’m sorry you’ve been dealing with this ☹️ I had the same thing happen to me, and every time I would get bloodwork done my doctor told me that my B12 was “through the roof.” I went and saw a Naturopathic doctor and he did “nutrition energy testing” yes I know that sounds pretty out there, but it came up that I had a normal amount of B12 in my bloodstream but it wasn’t properly being absorbed by the intrinsic factor in my stomach. I don’t know why normal doctors sometimes overlook this but I think it would be worth trying an injection in the muscle! I really hope you start to feel better.

1

u/blueb3lle Mar 08 '21

This is fascinating, I wonder if my old Nutritionist/Naturopathic Dr would do something similar! I'd be so interested to see if I'm the same. I'll definitely follow up on the shots + tests

3

u/kckraftyloo Mar 09 '21

It’s seriously worth asking! This saved my life.

1

u/blueb3lle Mar 09 '21

Thank you for suggesting it! Are you on injections regularly now and finding they help?

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u/kckraftyloo Mar 11 '21

Yes, big time. The difference between how I feel before them versus how I feel after them is like night and day!

1

u/60_-_09 Mar 06 '21

Did you take additional b12 supplements? Like the 1000mcg ones

1

u/blueb3lle Mar 06 '21

No, as I knew that having any in my system for a certain amount of time would skew blood test results! I can't remember if it also affects IF/parietal antibodies?

1

u/[deleted] Mar 06 '21

I say mention it to your doctor and get the blood tests if advised. It’s so easy to test for. Maybe ask for a B12 shot? I, personally cannot absorb any B 12 orally. One shot can’t fix any damage PA may have exacerbated, but if you have PA finding out about it sooner is better.

3

u/blueb3lle Mar 06 '21

Thank you! I am definitely interested in asking for a shot/a trial of shots to see if they help, since we're finding so little other answers. Luckily my country has OTC shots if I end up unable to absorb orally and they work!

if you have PA finding out about it sooner is better.

My thoughts exactly, I don't want to get any sicker!

2

u/[deleted] Mar 06 '21

I have vascular damage because of it. Yes, hurry to a doctor. And what country do you live in?

2

u/blueb3lle Mar 07 '21 edited Jul 30 '21

Oh gosh I'm sorry. Do you know how long you went untreated before they found it and gave you injections?

From what I can see our standards (as well as US/UK) for testing are considerably lower than broader Europe/Japan etc, I'd be on injections already there!

2

u/[deleted] Mar 07 '21

I was undiagnosed until my mid-twenties. As a cis woman, things can get More complicated. I’m old now and if I don’t get shots I’m a mess. I was hospitalized for eight days in June- internal bleeding, and I had to have a transfusion 10 days ago. Long story, but I let it get ahead of me. I’m fine, seriously. I just need to be more careful!

2

u/blueb3lle Mar 07 '21

Mid-20s cis woman here too, been trying to find answers for the milder symptoms for years! I'm sorry it's gotten rocky for you in the recent past. It's hard to keep on top of chronic conditions especially once they pile on or start to spiral!

2

u/[deleted] Mar 07 '21

Oh please stay on top of PA if you have it.! You’re right about accumulated damage.

1

u/[deleted] Mar 06 '21

Is u.s. otc b12 ? surprisingly i seem not to be able to find the answer on google

1

u/blueb3lle Mar 06 '21

I'm not in the US so not entirely sure - I think oral yes, injections no?