Correlation between peripheral neuropathy and low RBC?

Posted by Ray Kemble @ray666, Jul 1, 2023

I have idiopathic peripheral neuropathy. I've no pain but terrible balance. I also have two swollen feet. Doctors noticed my swollen feet long before I received my PN diagnosis, but they've never figured out why. I also have a low RBC (red blood count), for which I have seen a hematologist; he didn't appear to be terribly alarmed. I'm wondering: Do any of you with PN also have swollen feet? And has anyone (doctor-type) linked it to your PN? Same thing for a low RBC: Have any of you had a low RBC connected in some credible way to your PN? I'd sure love to know.

Ray (@ray666)

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@njed

@ray666 - I have my neuro doc appointment in September and I'm going to ask her to recheck my B-6. I went back on my labs and I don't see it for past 3 - 4 years. They check the B-12 each year but not the B-6 which I know low B-12 is a smoking gun but elevated B-6 can cause issues as well. My PCP did not order it. From a neurologist standpoint, I will also ask if there are any other lab tests that should be ordered along with B-6.

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Hi, Ed (@njed)

Reviewing copies of my old lab reports shows me that my B-12 has been checked routinely but not my B-6. I see that the NIH's RDA for B-6 is 1.7 mg/day. The NIH's UL (upper level) for B-6 for adults is 100 mg/day, and that includes what's absorbed as pyridoxine (supplement)." My daily B-6 absorption of B-6 from pyridoxine alone is 70 mg (two 35 mg EB-N5 capsules), so I'm under the UL of 100 mg/day, at least from the pyridoxine –– but what about my dietary daily intake? and my baseline B-6 level? That's critical info I don't have –– and that's why I'm chasing my neuro to get a script for a good, all-inclusive B-6 test.

Ray (@ray666)

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@ray666

Hi, Ed (@njed)

Reviewing copies of my old lab reports shows me that my B-12 has been checked routinely but not my B-6. I see that the NIH's RDA for B-6 is 1.7 mg/day. The NIH's UL (upper level) for B-6 for adults is 100 mg/day, and that includes what's absorbed as pyridoxine (supplement)." My daily B-6 absorption of B-6 from pyridoxine alone is 70 mg (two 35 mg EB-N5 capsules), so I'm under the UL of 100 mg/day, at least from the pyridoxine –– but what about my dietary daily intake? and my baseline B-6 level? That's critical info I don't have –– and that's why I'm chasing my neuro to get a script for a good, all-inclusive B-6 test.

Ray (@ray666)

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Ray, good point about dietary intake. For example, I eat a lot of oranges and eat 3 bananas a week. We eat cantaloupe in season. Poultry and some other fruits contain B-6 so I take 50 mg every other day. I'd rather shoot under than go over and getting B-6 level tested is probably as important as B-12. Of course, getting the doctor to order it...that's the hurdle.

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I have had neuropathy in my feet since I was diagnosed with Lyme 11 years ago. The feeling is tingling and burning, worsens throughout the day, improves overnight and in the morning. I also have low RBC and swollen feet and lower legs.
Docs I see are unconcerned and unaware of the cause of my neuropathy and low RBC (also low Hemoglobin and hematocrit). However, I am told the swollen feet and legs are due to valve insufficiency. My blood does not travel back up legs because those valves are not working well. I was encouraged to wear support socks to help.
I recently had an MRI which showed edema in my legs and feet.

I wish you all the best in your search for answers.

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@bettyg81pain

Yes-they get really swollen-purple and I guess they are small blood vessels showing-have no idea why or when they will swell or get like that because there are other times when I have been on my feet all day and they seem to be okay????

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@bettyg81pain, I have recently gotten large areas of purplish red veins all over both feet. I have asked a number of physicians and a podiatrist, etc., what these are. I am told, as you said, they are capillaries and indicate blood pooling in my feet. These seem to be permanent and continue to spread. Two docs have told me to wear compression stockings because the blood is not flowing well back up my legs. (Valve insufficiency.)

Sometimes my feet swell and other times not.
I hope some of this might be helpful to you (?).

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@ray666

Hi, jclare5269 (@jclare5269)

It sounds like your situation is far more uncomfortable. I'm lucky in that sense, I guess; my feet are simply swollen. I wear my compression stockings, but not that many hours each day. Maybe I should wear them more, but after months and months of watching the swelling––sometimes it's more, sometimes less––that's what got me wondering if the swelling is entirely linked to my PN.

Ray (@ray666)

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I wear compression socks pretty much 24/7. I double them up to help with the minimal walking I do. At night my feet really hurt. I don’t quite understand why. It may be that there are no distractions but I don’t know. Along with the pain, my feet swell more at night. They can swell so much that the compression socks become too tight and cause a lot of pain. I end up taking them off and make a late night trip to the restroom a much more difficult task.

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Hello!

Has anyone ever discovered a correlation between their PN and a low red blood cell count (RBC)? A year ago (August 2022), I received a dx of idiopathic sensory/motor PN. So far, my only symptoms are terrible balance, especially after prolonged sitting, and instability (along with some leg weariness) while walking even the shortest distances (1/2 city block).

Subsequent to my PN dx (April 2023), it was found that I also have a low RBC. I've seen a hematologist about my low RBC. I did lab work twice at his direction, last May and only last Tuesday. Both times, the results showed four lines out-of-range; last Tuesday, three were low (Creatinine 0.74, Sodium 130, Carbon Dioxide 19), and one was high (Free Kappa Light Chains 21.3).

I plan to ask my neurologist and my PCP if there might be a correlation between these lab results and my PN. (The hematologist doesn't think so.) I suspect they'll say no. Nonetheless, I'm curious: Have any of you ever found yourself with a dx of both PN and a low RBC, and was any correlation ever discovered? I'd welcome anyone's insights on this.

Cheers!
Ray (@ray666)

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@ray666

Hello!

Has anyone ever discovered a correlation between their PN and a low red blood cell count (RBC)? A year ago (August 2022), I received a dx of idiopathic sensory/motor PN. So far, my only symptoms are terrible balance, especially after prolonged sitting, and instability (along with some leg weariness) while walking even the shortest distances (1/2 city block).

Subsequent to my PN dx (April 2023), it was found that I also have a low RBC. I've seen a hematologist about my low RBC. I did lab work twice at his direction, last May and only last Tuesday. Both times, the results showed four lines out-of-range; last Tuesday, three were low (Creatinine 0.74, Sodium 130, Carbon Dioxide 19), and one was high (Free Kappa Light Chains 21.3).

I plan to ask my neurologist and my PCP if there might be a correlation between these lab results and my PN. (The hematologist doesn't think so.) I suspect they'll say no. Nonetheless, I'm curious: Have any of you ever found yourself with a dx of both PN and a low RBC, and was any correlation ever discovered? I'd welcome anyone's insights on this.

Cheers!
Ray (@ray666)

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I have the same type of neuropathy and my red blood cell's are a mess. My count is low and my cell's are very large. My hemoglobin is also low. All things related to my red blood cell's are either really low or very high. I do believe that there is a connection but my pcp just says that my red blood cell's are fine? But they aren't. Same with my b-12. I have to take a b-12 injection of 100 mcg just to keep it in the normal range.

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@bonez3861

I have the same type of neuropathy and my red blood cell's are a mess. My count is low and my cell's are very large. My hemoglobin is also low. All things related to my red blood cell's are either really low or very high. I do believe that there is a connection but my pcp just says that my red blood cell's are fine? But they aren't. Same with my b-12. I have to take a b-12 injection of 100 mcg just to keep it in the normal range.

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No formal correlation from my PCP either. Before I was diagnosed with any neuropathy, (at first it was "idiopathic small-fiber" - without docs bothering with a skin-punch, then, more recently "idiopathic polyneuropathy" after several EMG's) I had a bout of anemia which my primary doctor ignored for about 3 years - until I felt like passing out and insisted on a ferritin test. I don't feel like I can rely on doctors anymore to go out on a limb and even try to diagnose or treat anything unless it is blatantly staring them in the face. And even then! I had blood tests for almost 15 years with slightly macrocytic red cell values and low red cell counts and low hemoglobin. I finally got my PCP to do pernicious anemia testing after finding out that a second relative of mine had a history. By then I had decided take matters in my own hands and add regular B12, methyfolate and intrisic factor supplements. My tests came out normal, according to PCP. I regret not having a clue about this 15 years ago. Possibly could have avoided permanent nerve damage.

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@mayonaise28

No formal correlation from my PCP either. Before I was diagnosed with any neuropathy, (at first it was "idiopathic small-fiber" - without docs bothering with a skin-punch, then, more recently "idiopathic polyneuropathy" after several EMG's) I had a bout of anemia which my primary doctor ignored for about 3 years - until I felt like passing out and insisted on a ferritin test. I don't feel like I can rely on doctors anymore to go out on a limb and even try to diagnose or treat anything unless it is blatantly staring them in the face. And even then! I had blood tests for almost 15 years with slightly macrocytic red cell values and low red cell counts and low hemoglobin. I finally got my PCP to do pernicious anemia testing after finding out that a second relative of mine had a history. By then I had decided take matters in my own hands and add regular B12, methyfolate and intrisic factor supplements. My tests came out normal, according to PCP. I regret not having a clue about this 15 years ago. Possibly could have avoided permanent nerve damage.

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Hello, bonez3861 (@bonez3861), mayonaise28 (@mayonaise28)

Thanks for your posts. I find every time I receive the results of tests ordered by one of my doctors (in this instance, my hematologist), I have to set about informing my other doctors about these same results in case there might be some correlation between doctors' specialties and/or my medical conditions. I'm in the midst right now of spreading the word. Moments ago, I phoned my neurologist's office. Now, I'm going to call my PCP's office.

Ray (@ray666)

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@ray666

Hello!

Has anyone ever discovered a correlation between their PN and a low red blood cell count (RBC)? A year ago (August 2022), I received a dx of idiopathic sensory/motor PN. So far, my only symptoms are terrible balance, especially after prolonged sitting, and instability (along with some leg weariness) while walking even the shortest distances (1/2 city block).

Subsequent to my PN dx (April 2023), it was found that I also have a low RBC. I've seen a hematologist about my low RBC. I did lab work twice at his direction, last May and only last Tuesday. Both times, the results showed four lines out-of-range; last Tuesday, three were low (Creatinine 0.74, Sodium 130, Carbon Dioxide 19), and one was high (Free Kappa Light Chains 21.3).

I plan to ask my neurologist and my PCP if there might be a correlation between these lab results and my PN. (The hematologist doesn't think so.) I suspect they'll say no. Nonetheless, I'm curious: Have any of you ever found yourself with a dx of both PN and a low RBC, and was any correlation ever discovered? I'd welcome anyone's insights on this.

Cheers!
Ray (@ray666)

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I have both idiopathic PN and large red blood cells (Macrocytic anemia). My rbc count is also low. I’ve had it a long time and my neurologist isn’t interested in it as a possible cause, but some anemias are known to be causal so your mileage may vary.
Fwiw, I think it’s logical that even a mild, long term condition like that could cause a slowly developing case of neuropathy - and that modern medical practice would ignore it; They’re only interested when the causality is incontrovertible. Best of luck with your case.

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