NZ AL Amyloidosis Info

About

My name is Daniel Müller

My wife was diagnosed with AL amyloidosis in 2021.

I want to share what we have learned so far.

I have conducted research on AL Amyloidosis and discovered that the videos and links provided below are highly relevant to my wife's case.

This website is a work in progress, I will therefore update it every time I have something new to add.

Please let me know if you have suggestions or have a contribution to this knowledge-base by emailing daniel@debulec.co.nz

Introduction

Measuring the free light chains in one's blood is key to finding AL amyloidosis.

Here is a link that sheds more light on the light chains test: https://www.testing.com/tests/serum-free-light-chains/

Informative Videos

Below are links to insightful Youtube videos.

I am very grateful to all the presenters and everyone involved in these productions. They all helped us understand an illness we had not even heard of before June 2021.

Diagnosis and Treatment of Amyloidosis - Dr. Suzanne Lentzsch

Listen what Suzanne says at 44 seconds into the video..

Mayo Clinic Q&A podcast: Successful treatment of cardiac amyloidosis depends on early diagnosis

Diagnosing and treating AL amyloidosis: a 2020 update from Dr Morie Gertz

ASG AL Webinar October 29, 2022

Cardiac Involvement

Cardiac Amyloidosis by Dr. Mat Maurer

Cardiac Amyloidosis presentation focused on light chain (AL) amyloidosis by Mat Maurer, MD, Director, Cardiac Amyloidosis Center and Professor of Cardiology, Columbia University Medical Center.

At 15:51 in this video Mat explains why the Ejection Fraction (EF) is No Good in Cardiac Amyloidosis.

It is followed by an explanation of the Cardiac Output of the Heart which helps one understand why the heart rate is elevated in amyloidosis patients.

At 20:53 the concept of Myocardial Contraction Fraction (MCF) is explained.

MCF = Amount the heart pumps divided by the amount of "muscle" to pump the blood.

Cardiac Amyloidosis: Quick Tips on Amyloid-specific Therapy

Look up to 3:30 minutes for information about AL Amyloidosis

Diuretics

Skin Involvement

www.pcds.org.uk/clinical-guidance/amyloidosis-cutaneous

Skin involvement occurs in about 30-40% of patients.

Thyroid Hormone Levels

Not much is written about the role of T3 levels in the blood of a person with AL.

We found that T3 levels sometimes test low, even though TSH and T4 levels are within normal limits. I would like to know if the amyloid fibrils deposited throughout a patient's body interfere with the conversion of T4 into T3 in the body.

I found links relating to AL amyloidosis, hypothyroidism and reduced tissue availability of thyroid hormones on the Internet.

AL amyloidosis, hypothyroidism and reduced tissue availability of thyroid hormones by thyroid hormone-binding immunoglobulin: a new possible perspective

and here is a link to the original article by Dr E. Muchtar and M Gertz, Chair Emeritus Department of Medicine at Mayo Clinic, in reply to n the perspective above.

Unravelling hypothyroidism in AL amyloidosis: Authors' reply (The author referred to in the link in the hyperlink on the left is Dr E. Muchtar)

Living with a Rare Disease

I came across this article and Youtube video, and I think it is worth sharing here.

Watch the video here to the left, and also click on the link below for the full article.

www.hcplive.com/view/darcy-tannehill-al-amyloidosis

From the article:

"In 2012, the incredibly accomplished Tannehill was diagnosed with light chain—or AL—amyloidosis, but for the six years prior, she had been experiencing an array of symptoms characteristic of the disease’s typical early presentation. It started with gastrointestinal issues that she attributed to food allergies, and continued with differences noticed in her hair and fingernails, and eventually led to her having carpal tunnel syndrome. Her primary care physician (PCP) suggested that she might be vitamin deficient, but no vitamins ever made a difference.

Amyloidosis diagnosis, treatment concepts, and future - Dr. Mark Pepys

Professor Sir Dr. Mark Pepys explains diagnosis and treatment of Amyloidosis, links with Alzheimer's disease and misconceptions about Amyloidosis and Alzheimer's. Prof. Pepys also discusses dementia, inflammation, heart disease and C-reactive Protein (CRP).

Thanks to Diagnostic Detectives for publishing it on YouTube.

A synonym for CPHPC is Miridesap.

If anyone has ne information on this research, please get in touch with the author of this website.

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