Lingering/Recurring Anemia: Hey... - Pernicious Anaemi...

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Lingering/Recurring Anemia

lownskater52 profile image
12 Replies

Hey everybody,

I recently got some blood test back that have made me worried. I've been seriously b12 deficient for 10 years and became moderately anemic. I started b12 injections bi-daily or more and oral supplements heavily and after 3 weeks I was feeling a lot better and had made significant progress on my anemia. My values were very close to the lower end of normal but not quite there. I was feeling very optimistic. It's been 5 weeks now and in the last two weeks I've been sliding downward quickly. My weakness in the legs and lethargy/fatigue has returned. I took a CBC blood test and my anemia has come back considerably. Im back at the levels where I started at essentially. I've slowed my b12 injections very slightly from 3-4 times a week to 2-3 times a week but that should not be enough to cause these problems. I'm waiting on my other vitamins test to come back but my cofactors (folate, iron, b6, vitamin c) have always been solid at the normal or even high range. The b12 injections used to give me a blast of energy and clarity and now I feel very little from them. I cannot wrap my mind around this. If someone can help I'd greatly appreciate it. Most recent blood numbers attached.

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fbirder profile image
fbirder

Iron?

lownskater52 profile image
lownskater52 in reply tofbirder

Hey Fbirder glad to hear from you again. My iron has always been fine. Last iron test was 3 or 4 weeks ago and I was at 121 (50-180 N). Maybe it's time for another one?

My right big toe is also hurting me for some reason....

lownskater52 profile image
lownskater52 in reply tofbirder

I added my most recent blood tests numbers btw

Nackapan profile image
Nackapan in reply tolownskater52

Is it possible you did a bit more when you felt the benefit from the initial injections? I also back in January/February time thought upwards and onwards but like you it seemed to platau 3 fwd 2 back. It's a horrible feeling but try and go with the flow for a while as worry will just need counterproductive. You are doing everything you can at present it seems. Hope you improve soon.

lownskater52 profile image
lownskater52 in reply toNackapan

You're a kind person for helping me Nackapan. I really appreciate your support. Shouldn't the anemia part be the easy one? That's supposed to clear up right away in a straight line after a couple of months. The neuro stuff is supposed to be the long game. I just dk...

lownskater52 profile image
lownskater52

Might have stumbled on to something here. Got some partial results back from my full vitamin panel I ordered.

Vitamin b12 - >2000 (off the charts)

Folate - 12.8 (>5 N)

Vitamin D - 42 (30-100 N)

Since Ive been testing for the past 2 months, my folate levels have hovered around 21 and my Vitamin D has been around 50 to 60. This would make a new low for both. I'm not clinically deficient in either, but maybe folate is just low for my body and its causing a problem with my CBC results?

Nackapan profile image
Nackapan in reply tolownskater52

Could be put of balance. It's always good to get to know what right or your 'norm' within range. My ferritin was always in the 60s then after b12 defiency dropped to 32 abs stayed there despite supplements. Gp not concerned but I know at 69 I wasn't even taking supplements so was right for me. I'm having bloods 3 Months after last lot. I think done too often causes worry or confusion. Once mine have settied will wait alot longer. Glad I've helped a little. I know how frustrating it can be. I often clutch at straws looking for reasons. T C

Nackapan profile image
Nackapan in reply tolownskater52

I thought anaemia got sorted on a few months . That repair would affect or change your blood results.

Hi,

Do you have any kidney related issues? Gout? High uric acid?

My father has chronic kidney disease due to gout and when it’s not controlled he has severe anaemia episodes. The toe pain reminds me of the gout attacks.

lownskater52 profile image
lownskater52 in reply to

Wow. I think you're right. I think I have gout. I've never had kidney issues but it certainly sounds like gout according to the symptoms and there is evidence in research that shows a correlation between high b12 supplementation and gout. Wow. I am gonna order some tests to see if this is the case. Thank you for your input!

in reply tolownskater52

You’re welcome. I hope you find an answer soon 🤗

71jp profile image
71jp

I am in the same boat l am to have a ferritin test next week l have quite a lot of problems so to get answers to them sorry l have not been much help to you hope you get sorted out good luck

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