A diagnosis of primary biliary cholangitis (PBC) can be a big deal, especially if it comes after a long period of searching for answers. You may have been been struggling to find an explanation for nonspecific symptoms like itching or fatigue for months or years, and want to know that your diagnosis and treatment plan are right.
As a patient, it is always your right to seek a second medical opinion. It doesn’t mean that you don’t respect your first doctor’s professional opinion, just that you want to ensure you’re making the best decisions about your health and wellbeing.
Here’s when a second opinion may be helpful.
Uncertainty regarding diagnosis
A common reason for seeking a second medical opinion is if there is uncertainty regarding your diagnosis. Like many other diseases, PBC has a specific list of boxes that must be ticked before a diagnosis can be made. If your doctor has expressed to you that there is some doubt about your diagnosis but that the balance of evidence favors a diagnosis of PBC, it may be worth seeking a second medical opinion.
An example of this is unclear medical imaging of the liver and bile ducts. Or you may have a few overlapping conditions that complicate diagnosis.
If you do seek a second opinion, make sure you provide the doctor with as many test results and other medical records as possible.
Read more about PBC testing and diagnosis
Inadequate treatment response
You may also want a second medical opinion if your PBC treatment plan isn’t working for you.
In PBC, as in other diseases, patients usually start treatment with a first-line therapy — the standard treatment for a disease — since these therapies are generally what is most likely be successful. In PBC, this means ursodeoxycholic acid (UDCA), a drug that helps to improve bile flow.
However, UDCA isn’t fully effective in up to 40% of people with PBC. If the first-line therapy has not made much difference to your symptoms after a few months to a year of usage, your doctor will likely recommend a second-line PBC therapy, such as fibrates. This may be a time to consider confirming your PBC diagnosis or your treatment plan with another expert, to ensure you’re pursuing the right care for your symptoms.
Not feeling seen and heard
Another good reason for seeking a second medical opinion is if you feel that your doctor is not listening to your concerns.
Your doctor is supposed to take all the ways that the disease is affecting you into consideration, including its impact on your mental health, career and daily life. If you feel that your doctor is only addressing some — not all — of your concerns, a second medical opinion may be helpful.
Putting your needs first
The symptoms associated with PBC can be scary and difficult to adjust to. You deserve a care team that uses all the resources at their disposal to ensure you receive the very best care.
If you feel like your diagnosis or care was rushed, or you have other doubts, it may be a good idea to seek a second medical opinion. Nevertheless, try speaking to your primary care team about your concerns first, in case they can address them.
The process of getting a second opinion can be time-consuming and expensive, but is well worth the trouble if it puts your mind at ease that you are receiving the best treatment you can.
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