Amyloidosis: 3 Warning Signs Doctors Don't Warn Patients About - BlackDoctor.org

Heart failure is a serious condition — but sometimes, what looks like ordinary heart failure is actually something else entirely. One condition that often flies under the radar is amyloidosis.

Amyloidosis happens when an abnormal protein called amyloid builds up in the body’s tissues and organs. When this protein collects in the heart, it’s called cardiac amyloidosis. Over time, those protein deposits make the heart walls thick and stiff, making it harder for the heart to pump blood the way it should.

The problem is that amyloidosis can look just like other heart conditions. Many people go through standard heart tests for years before anyone realizes what’s really going on. But if doctors — and patients — know what to look for, the signs are often there.

Let’s walk through some of the clues that can help spot amyloidosis earlier.

Why Amyloidosis Is So Hard to Diagnose

Most people with heart failure get the usual tests: an echocardiogram (echo) to look at how the heart moves and an electrocardiogram (ECG) to check the heart’s electrical signals. These are important, but in amyloidosis, they can be confusing.

For example, the echo might show that the heart walls are thicker than normal — which often looks like high blood pressure or hypertrophic cardiomyopathy (a thickened heart muscle). But in amyloidosis, that thickening comes from protein buildup, not muscle growth. Meanwhile, the ECG might show low voltage (weaker electrical signals) even though the walls look thick. That mismatch is a major clue.

There’s another big hint on imaging called “apical sparing.” When doctors measure how different parts of the heart squeeze, the base and middle areas of the heart often look weak — but the tip (apex) still looks strong. This pattern can be one of the earliest signs of amyloidosis.

Everyday Clues That Might Point to Amyloidosis

Amyloidosis doesn’t just affect the heart. It can show up in surprising ways all over the body — sometimes years before heart symptoms begin. Here are a few things to look out for or mention to your doctor if they apply to you:

A history of bicep tendon rupture. If you’ve ever torn your bicep without a major injury, amyloid buildup could be the reason.
A diagnosis of “thick heart” or hypertrophic cardiomyopathy. If you’ve been told you have this but your blood pressure is normal or low, amyloidosis could be behind it.
Heart rhythm problems. Atrial fibrillation (irregular heartbeat) is common, and some people even need a pacemaker. These can be signs that amyloid is affecting the heart’s electrical system.
Aortic stenosis. In older adults, amyloidosis sometimes occurs alongside a tight aortic valve — especially if it’s a “low-flow, low-gradient” type.
Joint or tendon issues. Many people with amyloidosis have had hip or knee replacements, or carpal tunnel surgery, before heart problems show up.

Each of these symptoms might seem harmless or unrelated, but together they paint a picture that can help uncover the true cause.

The Signs We Don’t Talk About Enough

Some lesser-known symptoms don’t get nearly enough attention but are just as important in spotting amyloidosis early.

1. Heart Failure with a Normal Ejection Fraction (HFpEF)

If you’ve been told your heart failure is “with preserved ejection fraction,” meaning your heart’s pumping strength looks normal, amyloidosis might be part of the reason. In this form of amyloidosis — called ATTR-CM — the heart’s walls become stiff, so it can’t relax and fill properly. That leads to shortness of breath, swelling, and fatigue, even though the “ejection fraction” (the number doctors use to describe pumping strength) looks fine.

People over 60 who have heart failure with thickened heart walls but normal blood pressure deserve a closer look for amyloidosis. Newer imaging tests can pick up these subtle signs long before the disease advances.

2. Trouble Tolerating Common Heart Medications

This is another red flag many people — and even some doctors — miss.

If you’ve tried medicines like ACE inhibitors, ARBs, or beta blockers and they made you feel worse — dizzy, weak, or with very low blood pressure — it could be a clue. In amyloidosis, the heart already struggles to pump blood, and some of these drugs can drop your blood pressure too much. If that’s happened to you, it’s worth mentioning to your cardiologist.

3. Carpal Tunnel Syndrome and Spinal Stenosis

One of the most surprising links to amyloidosis is carpal tunnel syndrome — especially if it happens in both hands. That numbness, tingling, or pain in your fingers is caused by amyloid proteins building up and pressing on the nerves in your wrist.

Many people have carpal tunnel surgery in their 50s or 60s, then develop heart problems years later — only to learn the two were connected all along. Similarly, lumbar spinal stenosis (pressure on the spinal nerves that causes back or leg pain) can also result from amyloid buildup. These early clues are often the first hints of ATTR-CM, years before heart failure symptoms appear.

Why Awareness Matters

Amyloidosis used to be considered rare, but doctors now realize it’s more common than they thought — especially in older adults and in Black men, who have higher rates of certain genetic forms of the disease.

The good news is that there are now treatments available that can slow the disease down and improve quality of life. That’s why early detection matters so much. The sooner amyloidosis is diagnosed, the better the chances of preserving heart function and avoiding serious complications.

What You Can Do

If you or a loved one has:

Heart failure with normal pumping strength
Thickened heart walls without high blood pressure
A history of carpal tunnel, spinal stenosis, or tendon ruptures
Or trouble tolerating standard heart medications

…it’s worth asking your doctor whether amyloidosis could be part of the picture.

Simple noninvasive tests — including blood work, imaging, or a special heart scan — can help doctors figure out if amyloid is affecting your heart. And if it is, getting a diagnosis early means you can access therapies that truly make a difference.

The Bottom Line

Amyloidosis is tricky, but it’s no longer a mystery. With growing awareness, better imaging, and new treatment options, there’s real hope for patients.

So don’t ignore the signs, and don’t be afraid to speak up. What might look like “just another heart problem” could actually be something far more specific — and treatable.

By Derrick Lane | Published October 17, 2025