How to Talk to Your Doctor About Screening for T1D
If you are at higher risk for developing type 1 diabetes (T1D), you may want to talk to your doctor about getting screened for the condition. But many people are unsure how to speak with their doctor about requesting a screen—or what to even ask for!
This doesn’t have to be a hard or scary conversation. However, knowing what and how to ask for what you need can be helpful when navigating this conversation with your provider.
Who should get screened for T1D?
Type 1 diabetes (T1D) makes up only between 5-10 percent of all cases of diabetes in the United States.
There is high clustering of T1D in families. Around 6% of families have siblings that both have T1D, compared to 0.4% of the US population. Additionally, the risk for siblings of people with T1D is 15-fold higher than in the general population—especially for twins.
If you have T1D, the chance your child will develop T1D may be higher if:
- You give birth before age 25, there’s a one in twenty-five chance
- You give birth after age 25: one in one hundred chance (same as the general population)
- You are a man: one in seventeen chance
- If both parents have T1D: one in ten (highest) chance
- If you have T1D and developed it before age eleven: your child’s risk is doubled
While the exact cause of the condition is unknown, researchers believe it to be a mix of both genetic (family history) factors and an environmental trigger—like a virus. A study showed that children exposed to enteroviruses are more likely to develop T1D than those not exposed.
The majority of people who have risk factors, including exposure to viruses and strong family histories of T1D, do not go on to develop the condition but screening is important to rule this out.
Current clinical guidelines recommend that people who have a direct connection to someone with T1D (like a parent, sibling or child) should get screened for blood autoantibodies for T1D to gauge your own personal risk.
However, if you have any risk factors for T1D and want to be screened, you should be able to request getting tested with your provider.
What a screening test shows
Getting screened for T1D is still not a standard of care for most people, and it is not included in an annual physical or well-child visit for most kids. Most people are diagnosed with T1D due to the classic symptoms of the condition, including weight loss, thirst, frequent urination and being tired.
But if you’re at high risk for T1D, you will want to get tested for the markers for the condition long before you become symptomatic or even fall into diabetic ketoacidosis (DKA), which can be fatal.
T1D starts in the body long before insulin is ever required and before symptoms become apparent. Blood tests can identify proteins in the blood called autoantibodies that signal the immune system’s attack on insulin-producing beta cells in the pancreas.
If a person has two or more of these autoantibodies, it shows they are at high risk for developing T1D.
Asking your doctor about T1D screening
This can be a simple conversation that you may have to initiate, as not all doctors may know you and your family’s complete health history.
Bringing up getting screened
Most likely, your doctor will not bring up the topic of getting screened for T1D—you will need to do this if you want a screening.
You can initiate this conversation with your primary care doctor (PCP) either during your next annual physical, or you can contact them via phone call or message them through a patient portal to request a special blood test for T1D autoantibodies.
Your doctor will need to prescribe this blood test for you; unfortunately, you cannot request this from a laboratory on your own. The testing may be covered by your insurance, but that will vary by the health insurance you have.
This discussion doesn’t have to be a big deal and your doctor should be happy to order a blood test for you—especially if you’re feeling anxious about your risk for T1D.
If you are experiencing the symptoms of T1D, including excessive thirst, frequent urination, unexplained weight loss or extreme fatigue, seek emergency medical attention or call 911 immediately—undiagnosed T1D can be life-threatening if not treated quickly.
Be open about your reasons for wanting a screening
If your doctor doesn’t know you or your family’s health history, they may be skeptical about ordering an autoantibodies test for T1D. This is a great opportunity to simply explain your reasons for wanting to get tested.
This can be as simple as saying that you have a close family member with T1D and that you would feel more comfortable understanding your individual risk or the risk of your children developing the condition.
Your doctor cannot know your wants and needs unless you voice them.
Understanding what happens after a screening
Once you get the results from your screening, you may have no autoantibodies, one or even two. This should not make you panic—knowledge is power.
There are a few things you can do with this new information.
First, your doctor can work with you on identifying symptoms of T1D and what to look out for. If a diagnosis is made, it can be in its earliest stages and you’ll have a greater chance of avoiding DKA and all its complications.
Second, you can take the opportunity to sign up for research studies, including TrialNet or Autoimmunity Screening for Kids (ASK), which can put you in touch with world-renowned researchers and clinical trials for adults and children in the earliest stages of T1D development.
Third, there are new medications that can delay the development of T1D by between two and five years.
Remember that advocating for yourself is advocating for screening. Getting screened can diagnose T1D earlier, potentially preventing the development of DKA and maybe even delaying the condition a few years altogether.
You can learn more about getting tested at our screening resources.
Editorial Note: This content was made possible by Provention Bio, a Sanofi Company. Editorial control rests solely with Beyond Type 1.