Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?

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Thank you very much for the encouragement and advice!

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Quick question: does anyone else have low albumin? I asked about it and was told it indicated malnutrition. my significant size indicates otherwise. so I'm thinking either my liver isn't producing enough (uh oh) or I'm losing it to rapidly (uh oh).

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@mikxtr

Quick question: does anyone else have low albumin? I asked about it and was told it indicated malnutrition. my significant size indicates otherwise. so I'm thinking either my liver isn't producing enough (uh oh) or I'm losing it to rapidly (uh oh).

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@mikxtr
It appears that there are lots of causes of hypoalbuminemia, and yes, malnutrition is one of them. Sadly for me, malnutrition has more to do with quality of diet than quantity, foodie that I am.
I would want to have this conversation with your doc to rule out some of the other reasons for low albumin. It certainly is worth checking out.
What does your hematologist say?

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@pmm

@mikxtr
It appears that there are lots of causes of hypoalbuminemia, and yes, malnutrition is one of them. Sadly for me, malnutrition has more to do with quality of diet than quantity, foodie that I am.
I would want to have this conversation with your doc to rule out some of the other reasons for low albumin. It certainly is worth checking out.
What does your hematologist say?

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I don't have a Hematologist. I will be discussing this along with other items with my PCP in July, after my next round of tests. Or, I will if the albumin continues to decrease.

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@mikxtr

I don't have a Hematologist. I will be discussing this along with other items with my PCP in July, after my next round of tests. Or, I will if the albumin continues to decrease.

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Ahhhh I apologize. I thought you have MGUS. Glad you have a follow up scheduled.

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@mikxtr

Quick question: does anyone else have low albumin? I asked about it and was told it indicated malnutrition. my significant size indicates otherwise. so I'm thinking either my liver isn't producing enough (uh oh) or I'm losing it to rapidly (uh oh).

Jump to this post

@mikxtr Attached here is some information from Cleveland Clinic, about low albumin, also called hypoalbumineria.

As a kidney disease patient, albumin for me is carefully monitored, as it indicates the level of blood plasma protein for me. I have to watch it carefully. Daily dialysis is a strain on my system, and the need for keeping good protein levels is critical. Eating a good healthy diet, that includes protein in appropriate quantities, helps.

Would you care to share what health issues you have? Low albumin can be contributed to several different health concerns, like liver or kidney issues, infections, stress, lupus, etc. You said you are of significant size, and I'm glad you are asking this question. Your primary care indicated malnutrition, but did he/she say anything else to ease your mind, like what to do now?
https://my.clevelandclinic.org/health/diseases/22529-hypoalbuminemia
Ginger

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@pmm

Ahhhh I apologize. I thought you have MGUS. Glad you have a follow up scheduled.

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I *do* have MGUS, diagnosed summer last year. They consider me low risk and my M Spike did not change with the 2nd test (although both light chains did increase so nervous about that) so have not referred me. I did ask for a consultation with a Hematologist and he was incredibly dismissive because I'm low risk and have low level of M-protein.

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@gingerw

@mikxtr Attached here is some information from Cleveland Clinic, about low albumin, also called hypoalbumineria.

As a kidney disease patient, albumin for me is carefully monitored, as it indicates the level of blood plasma protein for me. I have to watch it carefully. Daily dialysis is a strain on my system, and the need for keeping good protein levels is critical. Eating a good healthy diet, that includes protein in appropriate quantities, helps.

Would you care to share what health issues you have? Low albumin can be contributed to several different health concerns, like liver or kidney issues, infections, stress, lupus, etc. You said you are of significant size, and I'm glad you are asking this question. Your primary care indicated malnutrition, but did he/she say anything else to ease your mind, like what to do now?
https://my.clevelandclinic.org/health/diseases/22529-hypoalbuminemia
Ginger

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Thank you for the link (and for all that you do! I think I missed you in my initial shout out to the MGUS/MM gurus here). I've been researching this for quite some time so I end up vacillating between liver concerns and kidney concerns. Close monitoring with daily dialysis (ooof) makes sense. The doctors have not said more than malnutrition. They dismissed it as a minor concern. I'm planning to discuss again if it continues to drop.

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@mikxtr

I *do* have MGUS, diagnosed summer last year. They consider me low risk and my M Spike did not change with the 2nd test (although both light chains did increase so nervous about that) so have not referred me. I did ask for a consultation with a Hematologist and he was incredibly dismissive because I'm low risk and have low level of M-protein.

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@mikxtr
Oh okay. I went another direction. Here’s the way I look at it. MGUS is not cancer but I want a specialist who works with MGUS and Multiple Myeloma patients every day. I think about it like I do my colonoscopy (yuck, sorry!). I want the gal who has done thousands rather than the first year resident or general practitioner.
I also want someone who has had more than a quick blood disorders rotation in med school. Hematologists complete med school and three year residency then in addition do a 3 to 5 year fellowship of specialized training. Blood disorders are complex and can have bone and soft tissue implications.
With all due respect to my excellent PCP, I want a specialist to diagnose and possibly eventually treat my MGUS if my numbers get wanky or if it advances.
I’m really glad your MGUS is low risk. How often will you get blood analysis?

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@pmm

@mikxtr
Oh okay. I went another direction. Here’s the way I look at it. MGUS is not cancer but I want a specialist who works with MGUS and Multiple Myeloma patients every day. I think about it like I do my colonoscopy (yuck, sorry!). I want the gal who has done thousands rather than the first year resident or general practitioner.
I also want someone who has had more than a quick blood disorders rotation in med school. Hematologists complete med school and three year residency then in addition do a 3 to 5 year fellowship of specialized training. Blood disorders are complex and can have bone and soft tissue implications.
With all due respect to my excellent PCP, I want a specialist to diagnose and possibly eventually treat my MGUS if my numbers get wanky or if it advances.
I’m really glad your MGUS is low risk. How often will you get blood analysis?

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I agree with you. Unfortunately, the specialists in my system do not. They wanted 2 tests within 6 months and then every few years! I pushed for a 3rd test and if numbers are not changing then I'll concede to annually. My PCP does talk with the specialists and has been supportive but I do notice some holes in her knowledge. I'm trying to be patient but it's a gatekeeper system so I have to play the game for a while.

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