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DEAR DR. ROACH: Many of my dad’s side of the family -- from my grandmother to my uncles and aunts, as well as their kids -- have had oculopharyngeal muscular dystrophy (OPMD). Most people started having symptoms around age 65, and I’m 64. My dad had a bad heart, got the eyelid surgery for OPMD, and used a walker since his late 60s. I didn’t get the test yet; however, I do choke often, and my eyelids do droop a little.
What are your thoughts on taking testosterone to offset the muscle girdling? I had a radical prostatectomy in 2012 and have had a PSA of 0 ng/mL since. I was on testosterone injections for two years, but insurance stopped covering them. It does cover them again now.
I’m always fatigued, and I can no longer lift half the weight that I used to. Heck, I used to be like a spider up on rock climbing walls, and now I can’t even support my own weight. My concern is my blood becoming thicker while on testosterone. When I got blood work done, they had a hard time drawing blood, yet my red blood cell count was in range. I’d like to be mobile for as long as possible. -- J.
ANSWER: OPMD is a rare muscle disease that affects the eye muscles first, which causes drooping of the eyelids (the medical term is ptosis) early on during the course of the disease. This can be bad enough to affect a person’s vision and require surgery. Another early symptom is trouble swallowing, which can cause the choking sensation that you describe. Difficulty swallowing can lead to food being aspirated into the lungs, which leads to lung damage -- the most dangerous part of OPMD.
Later on in the course of the disease, hip and shoulder weakness can sometimes make people need a cane or walker. For OPMD, medications aren’t standardly recommended; the principal treatments are physical and occupational therapy. People with swallowing trouble require a modified diet and sometimes other procedures to help them swallow better.
Given your family history and symptoms, OPMD sounds very likely. Molecular genetic testing of the PABPN1 gene (the gene that’s responsible for OPMD) is nearly always diagnostic, and a muscle biopsy is rarely performed.
Testosterone therapy is effective for men with low testosterone levels and symptoms (such as reduced energy, low muscle mass, and reduced strength). The decision of giving testosterone to men after prostate cancer treatment is controversial, but since you have been on testosterone before, your doctors must have approved it. What isn’t clear to me is whether your symptoms of fatigue and weakness are due to low testosterone after undergoing prostate cancer treatment or whether it’s OPMD. Testosterone isn’t helpful for weakness due to OPMD.
“Thick blood” due to testosterone is almost always when testosterone levels are raised in excess. If your testosterone levels are monitored and adjusted to stay within the normal range, high levels of hemoglobin beyond the normal are quite rare (at less than 2%). Hemoglobin levels can get dangerously high in men who are using extremely high doses of testosterone for muscle building outside of a doctor’s care.
About two-thirds of men using testosterone this way will get abnormally high hemoglobin levels (a cause of hyperviscosity, or “thick blood”). This can lead to a high risk of heart attack, blood clotting, heart muscle damage (cardiomyopathy and heart failure), abnormal cholesterol levels, and stroke (although it’s rare). These aren’t significant risks when testosterone is correctly prescribed.
Having a hard time drawing blood is common in many people with chronic medical issues, including cancer, and probably doesn’t have anything to do with your blood counts.
Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu. (c) 2026 North America Syndicate Inc. All Rights Reserved