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Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How common is severe weight loss? involvement of GI system?

A MyAmyloidosisTeam Member asked a question 💭
Guilford, CT

Husband has ATTRwt. Went from 142 to 115 lbs over 2 years, despite attempts to gain some weight back. Extreme muscle loss and anemia. So far, scopes and scans cannot locate cause - started iron infusions.

August 19, 2025
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A MyAmyloidosisTeam Member

I lost 53 lbs at the beginning. I forced myself to eat. After chemo my taste is definitely better but not the same. I don’t enjoy eating like I used to. Plus I have chronic diarrhea. I’m always worried whatever I eat is going to make me sick. I gained back 25 lbs so now I’m at a good weight.

August 19, 2025
MyAmyloidosisTeam

Weight loss is very common in amyloidosis, affecting nearly 90% of patients. While ATTRwt (wild-type ATTR amyloidosis) typically progresses more slowly than other forms, significant weight loss can still occur. This condition usually appears in people over 65 years of age when the TTR protein becomes less stable and forms Show Full Answer

Weight loss is very common in amyloidosis, affecting nearly 90% of patients. While ATTRwt (wild-type ATTR amyloidosis) typically progresses more slowly than other forms, significant weight loss can still occur. This condition usually appears in people over 65 years of age when the TTR protein becomes less stable and forms amyloid deposits. Gastrointestinal involvement in amyloidosis can cause several symptoms that contribute to weight loss:

• Severe constipation
• Diarrhea
• Early feeling of fullness during meals
• Nausea and vomiting
• Slowed stomach emptying
• Discomfort after eating

These digestive issues can significantly impact nutrition and weight maintenance. Given the combination of symptoms you're describing - severe weight loss, muscle loss, and anemia - it would be important to work with your healthcare team to develop a comprehensive nutrition and treatment plan.

August 19, 2025

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