Mystery Dx: macrocytosis without anemia

Posted by msrenitad @msrenitad, Sep 21, 2023

Hi all! I am having issues with my labs. I’m seeing a hematologist because I have been diagnosed with macrocytosis polyclonal gammopathy. However other aspects of my labs suggest other things. I just want to know what’s causing this mystery in my body and fix it. But right now, it’s puzzling my doctor.

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@msrenitad Welcome to Mayo Connect, a community of patients and caregivers who share our medical journeys and try to help one another along the way.

Every day we see someone like you, with a new and interesting question. This was a new one to me - so I put on my trusty "research nerd" hat and went looking. Most of what I found tells me this is not a "primary" health condition that has a specific treatment - rather it is usually a sign that some organ (usually the liver) has issues that need a further look.
Here is a brand new article from the National Institutes of Health that seems to provide a lot of information and references to other articles.
https://www.ncbi.nlm.nih.gov/books/NBK585137/
The good news is that this condition seems to be very treatable by identifying the underlying condition and dealing with it.
Do you have a follow-up appointment with your hematologist, or possibly a referral to someone more familiar with this condition?
Sue

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@sueinmn

@msrenitad Welcome to Mayo Connect, a community of patients and caregivers who share our medical journeys and try to help one another along the way.

Every day we see someone like you, with a new and interesting question. This was a new one to me - so I put on my trusty "research nerd" hat and went looking. Most of what I found tells me this is not a "primary" health condition that has a specific treatment - rather it is usually a sign that some organ (usually the liver) has issues that need a further look.
Here is a brand new article from the National Institutes of Health that seems to provide a lot of information and references to other articles.
https://www.ncbi.nlm.nih.gov/books/NBK585137/
The good news is that this condition seems to be very treatable by identifying the underlying condition and dealing with it.
Do you have a follow-up appointment with your hematologist, or possibly a referral to someone more familiar with this condition?
Sue

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Hi Sue and thank you for responding and giving me additional information. I do have a follow up appointment in October. I don’t have any issues with my liver and thats the piece they don’t understand. The hematologist did say that whatever the issue is I was born this way.

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@msrenitad

Hi Sue and thank you for responding and giving me additional information. I do have a follow up appointment in October. I don’t have any issues with my liver and thats the piece they don’t understand. The hematologist did say that whatever the issue is I was born this way.

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If you read to the bottom of the very long article, there can be other causes - infection, thyroid issues, and inflammatory (autoimmune) disorders among them.
Sue

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Yes I saw that and I do have hypothyroidism.

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Hello All, hope everyone had a Happy Thanksgiving! I just wanted to come back to my post and add what else is going on with me. I couldn’t go to my appointment in October due to a sinus infection. I went back to the hematologist on November 21st. I have been experiencing some swelling in my neck, clavicle area for some time now. When I first had these symptoms, I had an U/S and a CT scan done of the area about a year ago and it didn’t show anything. I noticed that there is a bump or something in that area. It doesn’t hurt but I notice it. At my appointment on the 21st I was told once again that I have macrocytosis w/o anemia and he also said something about polyclonal gammopathy and my white blood cells have increased. I expressed to him that I feel like I’m losing my mind. I’m going through menopause which doesn’t help at all. He then told me oh no Renita, something is definitely going on in your body and I’m determined to find out. I really appreciate him encouraging me but I need to know what is going on. I’m scheduled for a CT scan once again of my clavicle/neck area. Anyone else have experienced this?

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@msrenitad

Hello All, hope everyone had a Happy Thanksgiving! I just wanted to come back to my post and add what else is going on with me. I couldn’t go to my appointment in October due to a sinus infection. I went back to the hematologist on November 21st. I have been experiencing some swelling in my neck, clavicle area for some time now. When I first had these symptoms, I had an U/S and a CT scan done of the area about a year ago and it didn’t show anything. I noticed that there is a bump or something in that area. It doesn’t hurt but I notice it. At my appointment on the 21st I was told once again that I have macrocytosis w/o anemia and he also said something about polyclonal gammopathy and my white blood cells have increased. I expressed to him that I feel like I’m losing my mind. I’m going through menopause which doesn’t help at all. He then told me oh no Renita, something is definitely going on in your body and I’m determined to find out. I really appreciate him encouraging me but I need to know what is going on. I’m scheduled for a CT scan once again of my clavicle/neck area. Anyone else have experienced this?

Jump to this post

Renita, I'm glad that you have a doctor who is persistent in pursuing a diagnosis. It can be a long road, but you have a team that's working with you. That counts for a lot.

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