1. < Blood Cancers & Disorders

Monoclonal Gammopathy of Thrombotic Significance (MGTS)

Posted by t2576mk @t2576mk, Dec 26, 2024

I am the first person who experienced this rare MGTS blood clotting disorder that looks like Heparin Induced Thrombocytopenia (HIT) with a positive antibody (PF4) but occurs in absence of heparin.
Taking blood thinners has kept me from clotting but can't come off them for even a couple days without clotting. The PF4 antibody is stuck on and there is no solution to turn it off.
I know there others out there that have MGTS but have no way to connect with them.

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Mentor
Patty, Volunteer Mentor | @pmm | Dec 26, 2024

@t2576mk
Greetings and welcome to the Mayo clinic connect. I did a search and connect for someone who has posted on MGTS and found no posts.
Looking at the literature it is a very rare diagnosis. In fact, there is a letter to the editor from Greek researchers in the New England Journal of Medicine recommending that there be more standardization in the diagnostic criteria.
Perhaps someone more savvy about the search properties in Connect can help us with this or one of our members can chime in.
It’s hard enough coping with a new diagnosis, but one doesn’t like to feel alone in the storm.
When were you diagnosed and how did they rule out other clotting diagnoses to narrow down to MGTS? Were you already diagnosed with MGUS? How did they find the M paraprotein?

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Mentor
Patty, Volunteer Mentor | @pmm | Dec 26, 2024
In reply to @pmm "@t2576mk Greetings and welcome to the Mayo clinic connect. I did a search and connect for..." + (show)
@pmm

@t2576mk
Greetings and welcome to the Mayo clinic connect. I did a search and connect for someone who has posted on MGTS and found no posts.
Looking at the literature it is a very rare diagnosis. In fact, there is a letter to the editor from Greek researchers in the New England Journal of Medicine recommending that there be more standardization in the diagnostic criteria.
Perhaps someone more savvy about the search properties in Connect can help us with this or one of our members can chime in.
It’s hard enough coping with a new diagnosis, but one doesn’t like to feel alone in the storm.
When were you diagnosed and how did they rule out other clotting diagnoses to narrow down to MGTS? Were you already diagnosed with MGUS? How did they find the M paraprotein?

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@loribmt Lori, am I missing something in my search? Please see above.

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Mentor
Lori, Volunteer Mentor | @loribmt | Dec 26, 2024
In reply to @pmm "@loribmt Lori, am I missing something in my search? Please see above." + (show)
@pmm

@loribmt Lori, am I missing something in my search? Please see above.

Jump to this post

I’m coming up short on info myself, Patty.
I’ve found information in PubMed. An excerpt from the article. “ We propose the new umbrella term "monoclonal gammopathy of thrombotic significance" (MGTS) to refer to significant, recurrent thrombotic events in patients with MGUS that provide a rationale for targeting the underlying plasma cell clone. Identifying MGUS patients at high risk for thrombotic events is currently a challenge.”
https://pubmed.ncbi.nlm.nih.gov/36672429/
~~~~~
And this from mdpi.com
https://www.mdpi.com/2072-6694/15/2/480

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