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What Does Carpal Tunnel Have to do with Heart Disease?

Have you been diagnosed with carpal tunnel syndrome? In both wrists? Are you a man over 50 or a woman over 60? Do you also suffer from congestive heart failure or other heart disease? Can the numb, tingly fingers of carpal tunnel syndrome be a harbinger of undetected heart disease?

If you’re in your 50s or 60s and you have just developed carpal tunnel disease, it’s possible that a serious disease – amyloidosis – may be lurking in your body. And you’re even more likely to silently suffer from this disease if you’re also a male who had a ruptured biceps tendon or lumbar stenosis.

If you’ve had carpal tunnel, you probably know that the numbness comes from compression of the median nerve, which goes from your wrist to your fingers. If you’re like me, you probably never even mentioned this carpal tunnel diagnosis to your cardiologist. Why would you?

The transverse carpal ligament is like a roof that holds nerves and tendons in place as they radiate out from your wrist to your fingers. It seems simple enough that somehow “things” might swell up and compress the nerves that run below it. You probably weren’t born with carpal tunnel – it’s something you develop over time. Respected publications, like Harvard Health Publishing, list causes including arthritis, fractures, diabetes, pregnancy, thyroid disease, and overuse from repetitive stress. Most do not mention amyloidosis.

Cardiac amyloidosis is still considered a rare disease. But research suggests it’s probably pretty common. Some believe that 99 percent of all people with amyloidosis are undiagnosed! There are two primary reasons: first, most doctors have never knowingly seen an amyloid patient. They may have read about the disease, but for most, it’s just not on their radar. Second, until recently, there were no good detection mechanisms. Most diagnoses were made during autopsies, obviously too late.

We now know that carpal tunnel can be caused by amyloid deposits that accumulate in the wrist, which squeeze and damage nerves. You may have heard that amyloid “plaques” play a part in Alzheimer’s disease, but systemic amyloidosis – which is different – can affect many other parts of your body, like your wrists, heart, kidneys, nerves, and other organs.

In cardiac amyloidosis, amyloid fibrils accumulate in heart muscle, making it thicker and less elastic. Cardiomyopathy or congestive heart failure (CHF) explains why you have fatigue, shortness of breath, and fluid retention. So most diagnoses stop here. But what caused the CHF? If there’s no obvious “why,” your CHF is termed “idiopathic.” However, if you’ve had carpal tunnel, it’s possible the why is cardiac amyloidosis.

Historically, if a doctor suspected cardiac amyloidosis, the only definitive diagnostic was a heart biopsy. This procedure involves threading a catheter into your heart and snipping out a bit of tissue. It was considered too invasive for a “rare” disease absent a strong suspicion of amyloidosis, which was unlikely since most doctors have never knowingly seen a cardiac amyloid patient.

In the past, diagnosis didn’t much matter, because there were no effective treatments. But since we can now diagnose amyloidosis with new and relatively inexpensive techniques – and since there are now treatments – detecting and treating amyloidosis early can now save lives and suffering. Nevertheless, your doctors first have to suspect amyloidosis.

A study[1] published in October 2018 showed a high incidence of amyloidosis in patients with no previously detected heart disease. Using sophisticated screening techniques and biopsies of surgically removed tissue, researchers found that 10 percent of the patients in the study had amyloid deposits in the carpal tunnel. They detected previously undiagnosed cardiac involvement in two of 10 study patients. One had a gene mutation leading to progressive amyloid polyneuropathy (which can cause weakness, numbness, and burning pain).

There were other early indicators: six of 10 patients had a history of spinal stenosis (a squeezing of the spinal cord nerves), six had been treated for trigger fingers, and two had experienced a ruptured biceps tendon. This was the first study to prove the significance of carpal tunnel disease in diagnosing amyloidosis at a very early stage, when treatments would be most effective. Carpal tunnel surgery probably saved lives.

This study, which also showed that simple blood tests cannot diagnose amyloidosis, prompted The Cleveland Clinic to start routinely biopsying carpal tunnel tissues. More institutions have followed, and some day it may be routine.

What should this mean to you? Talk to your doctor about amyloidosis if you’ve had any of these early indicators (bilateral carpal tunnel, lumbar stenosis, or ruptured biceps tendon). Ask questions – it’s better to be safe than sorry. If your doctor doesn’t know about amyloidosis, point to the references in this article. My first symptoms predated diagnosis by a decade, and that’s not uncommon. Ten years ago there were no treatments, but now there are. The little bit of knowledge in this article could save your life.

If you are diagnosed with amyloidosis, it’s important to find out what type you have – there are many variations, with different symptoms and outcomes. Some are hereditary. In the past, some were fatal in 6-12 months. But not now. We now have treatments, and there are many drugs in the pipeline, so this is now a treatable disease. And not surprisingly, the sooner you get treatment, the better it’s going to be.

Once you’ve been diagnosed, consider a treatment “center of excellence,” available in many parts of the US. You can find them here:

  • “My Amyloidosis Pathfinder” Maintains a current list of treatment centers (and many other helpful links).  

Other helpful resources:

  • Amyloidosis Research Consortium A rich source of information for patients, caregivers, and researchers.
  • Amyloidosis Support Groups A tremendous source of information about the disease, treatments, and clinical trials. Most states have local chapters that meet regularly. Meetings are for patients, caregivers, and medical personnel.
  • Facebook user groups. I follow “Amyloidosis- Wild Type- ATTRwt –wtATTR.”

If you suffer from ATTRwt (Amyloidosis Transthyretin wild type, non hereditary amyloidosis) – Pfizer’s Vyndaqel (Tafamidis) received FDA approval in May 2019. Vyndaqel stabilizes the proteins that cause the disease. It doesn’t remove amyloid deposits; its purpose is to limit the progression of the disease. Although ATTR (both wild type and familial) cannot be cured, some variants of amyloidosis can. And more treatments – perhaps even a cure for ATTR – are on the way.

There’s a lot more to learn about amyloidosis! With better knowledge, you may not have to wait for treatment until the disease has damaged your heart or other organs. Although I’ve talked mainly about ATTR, there are dozens of amyloidosis variants. If you’ve been diagnosed, or if you’re just curious, the links I provided can get your search started. Good luck! Remember, this is not a death sentence. The sooner you start treatment the better (and longer) your life will be. In November 2018, I got my ATTRwt, diagnosis at OHSU in Oregon, thanks to Drs Stephen Heitner and Albert Camacho – after years of missed diagnoses. My activities are severely limited, but I’ve been on Vyndaqel since February 2019, and I’m hopeful!

[1] Brett W. Sperry, et. al. “Tenosynovial and Cardiac Amyloidosis in Patients Undergoing Carpal Tunnel Release.” Journal of the American College of Cardiology, Vol. 72, No. 17.


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Posted in Amyloidosis.