It’s a medical horror story. Between 1959 and 1985, about two thousand patients were given growth hormones from cadavers to treat growth disorders such as dwarfism. Now, researchers found that the treatments, which are no longer used, may now be causing early dementia in those patients. This is one of the many reasons that it’s crucial to maintain your medical records.
The treatment is no longer given because older studies showed that some patients received injections that contained prions, or misfolded proteins, that caused a type of dementia called Creutzfelt-Jakob disease. In the most recent study, the scientists found evidence that some patients also had beta-amyloid plaques and tau tangles, considered to be the hallmarks of Alzheimer’s disease. While Alzheimer’s typically strikes people over the age of 65, these patients were in their 40s.
The takeaway for the researchers was that in rare instances, neurodegenerative diseases can be transmissible between patients, but at MedShadow, we think there’s another practical lesson. You need to be keeping your own detailed records of the conditions you’ve been diagnosed with, symptoms you’ve experienced, and treatments you’ve received. You never know when we might discover a long-term side effect of a drug you were prescribed years ago. If that happens, you need to be able to tell your healthcare provider that your new symptom may, in fact, be a side effect.
Uneaka D. says she realized she needed to keep her own records because her doctor retired without notice, leaving her scrambling to find her records. “I do not know what happened to the records that she kept in her old office and there was no number to contact her,” Uneaka says. If you change providers, doctors’ offices don’t always transfer complete records.
It’s not the first time a drug has caused a serious, irreversible side effect that emerges decades after people started taking it. DES (diethylstilbestrol) is a prime example. It was given to pregnant mothers in the 1940s until 1971. Since then, researchers have found that the children—and even grandchildren—born to those mothers have higher risks of cancers, malformed reproductive organs, breast cancer and a slew of reproductive problems.
Makena, a drug similar to DES was recently removed from the market. It’s known to impact generations. In fact, within 10 years of being approved by the FDA, 31% of newly approved medications are found to cause serious safety events. Half of those events show up within the first 4.2 years after approval, but many more show up even later on. Some new risks even emerge after the drug has been on the market for more than 10 years. Sometimes these trigger new black box warnings about the drug’s risks. Other times the FDA removes the drug from the market entirely. If you’ve taken a drug that later gets removed from the market or is given a new black box warning, you’ll want to be able to bring that information to your current provider.
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How to Keep Your Own Medical Records
Having detailed records of your health will help both you and your healthcare provider track down the cause of any new issues.
In some ways, electronic health records have made it a lot easier to get access to your medical records, but you can’t rely on those alone. Certain healthcare providers may use different systems that make it more difficult to share records with each other, and sometimes the notes in your records are incomplete or inaccurate. For example, I once noticed my visit summary online stated that I’d agreed to implement a strict low-fat and low-carb diet to treat my PCOS, which I did not. The only discussion we had of the condition was when my doctor handed me a printout of an online article listing a few foods that can help lower testosterone! Uneaka adds that after she started maintaining her records and seeing a new doctor. She had her own records at home, but when she checked the doctor’s records on the computer, a new medical issue they’d discussed at the latest appointment was completely missing. She was grateful she had kept her own copies.
Step 1: Collect Your Records
The first thing you want to do is collect hard copies of all of your records. If you have online access, go there and print out your visit summaries, laboratory test results, and prescription lists. If any of your records are not available online (maybe you haven’t seen a particular specialist for a few years), call the office and request hard copies. There’s a chance you may have to pay for these copies.
Step 2: Review the Records
Read through all of the records carefully. If anything seems inaccurate or incomplete to you, write notes in the margins or on another sheet of paper that you staple to the original.
Step 3: Make a Doctor Directory
Make a page that includes the name, specialty, and contact information for each provider you’ve seen so that newer providers can contact them in the future if need-be.
Step 4: Organize in a Binder Chronologically
Get all those records and notes and put them in chronological order in a binder. You can use color-coded tabs to signify years or the tracking of particular conditions. The directory can go at the beginning or the end.
Step 5: Consider Creating a Digital Folder
You can also scan your records and create a medical records folder in your computer. Within that folder, you should create subfolders for each year, and possibly for each condition or specialist you see.
Step 6: Maintenance
Maintain the file. Add new records whenever you see a provider and consider downloading MedShadow’s Symptom and Side Effect Tracker to monitor how your conditions and treatment are impacting you day to day.
