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Questions for Doctors

Questions to ask about any medical test:

Medical tests such as lab tests, scans and other procedures to diagnose conditions are one of the most important parts of healthcare. Test results can be confusing. The result is not always a clear yes or no. This blog post lists suggested questions to help understand why you are getting this test, how to interpret the results and what the next steps should be.

We are not medical professionals. Please consult a medical professional before making any medical decisions. Use these questions to help navigate medical tests together with your health care team.

  • What is the purpose of this test: what does it rule in or out?
  • Are these normal results? What is the margin of error on these results?
  • How do these current results compare to my past tests?
  • Can these results be off such as dehydration, equipment not built for people with dwarfism, bias in the algorithm used to calculate score, or false positive or false negative?
  • What do I actually need to do about this, and how soon should I take action?
  • What can I do to bring this to a normal range such as diet, exercise, medication or a surgical procesure?
  • What is the risk of taking this action if the test is a false positive?
  • What is the risk of a false negative?
  • When should I re-test?

Specific considerations for people with dwarfism

Measurement: Blood pressure (BP).

What is blood pressure? Blood pressure is the force that blood flows through your arteries. Blood pressure consists of two numbers: systolic and diastolic. Systolic is the force your blood exerts on the artery walls when your heart beats and pumps blood out. Diastolic is the pressure in your arteries when your heart is resting between beats. https://www.heart.org/en/health-topics/high-blood-pressure/understanding-blood-pressure-readings

Units: Blood pressure is measured in millimeters of mercury (mm Hg).

Reason Measurement Might be off: The Blood pressure (BP) cuff is not designed for people with dwarfism. Differently shaped arms cause incorrect blood pressure results. Why the wrong cuff can skew BP readings:

  • Elbow contractions (arms do not straighten) make it hard for the cuff to sense the blood flowing in the brachial artery. The sensor is designed to work on arms that straighten all the way. If your arm is bent and turned, the sensor can not read the brachial artery.
  • Short and wide arms also make the brachial artery hard for the sensor to detect.
  • Muscular arms can cause irregular compression with standard sized cuffs. This can cause falsely high BP readings.

If your upper arm does not fit a standard-sized cuff, consider measuring blood pressure at your forearm instead of your upper arm.

What to ask: Is this blood pressure cuff the right size for me?

Actions you can take:

  • Before taking blood pressure, measure your arm correctly. Use a tape measure to do measure your arm. Measure both your arm circumference and the arm length from your elbow to your shoulder. Check that the BP cuff used matches your arm measurements. Each cuff usually comes with the range of measurements it fits.
  • If you can not find a BP cuff that fits, you can have your BP measured at the forearm instead of your upper arm. Make sure your wrist muscles are not tense when your BP is taken at the forearm. You will get a falsely high blood pressure reading if your wrist muscles are tensed up when you take BP.
  • Once you find a blood pressure cuff that fits, buy this sized BP cuff and BP home measuring device. You may need to buy the cuff separately from the BP monitor. Measure your blood pressure at home and track the results. Bring your home blood pressure results and home blood pressure monitor to medical visits. This is one of the most important steps you can take!
  • Let your doctor’s office know ahead of time you need a specific cuff size. Do not settle for a BP cuff that does not fit because the doctor’s office does not have the right size that day.
  • Rest quietly for at least 5 minutes before taking blood pressure. Do not allow yourself to be rushed at the doctor’s office. Be polite, but firm.
  • Before taking blood pressure, make sure you are sitting in a comfortable seat with your back and legs supported.
  • The cuff should be about 1 inch (2.4 CM) above your elbow crease. If the blood pressure cuff covers your entire upper arm, it is the wrong size for you, https://www.mayoclinic.org/diseases-conditions/high-blood-pressure/expert-answers/blood-pressure-cuff/faq-20058337.
  • Blood pressure should be measured directly on the skin, never over clothes.
  • Your arm should be supported at heart level during the BP measurement. If you have a short trunk, your arm may need to be higher than average sized people. Your arm should not be in your lap or unsupported, https://www.hopkinsmedicine.org/news/newsroom/news-releases/2024/10/johns-hopkins-medicine-study-finds-commonly-used-arm-positions-can-substantially-overestimate-blood-pressure-readings

Why is this important?

  • A cuff that is too big or too small can provide incorrect readings.
  • Taking blood pressure incorrectly can also give false results.
  • Blood pressure is often taken incorrectly in medical office, https://www.ama-assn.org/public-health/prevention-wellness/4-big-ways-bp-measurement-goes-wrong-and-how-tackle-them . You can refuse to have your blood pressure taken incorrectly. Be polite, but firm. Medical assistants are often rushed and have an impossible schedule to maintain. Bring some food for the office, such as a bag of oranges or some tea for the break room.
  • Be polite but firm on having your blood pressure taken correctly. Your life may depend on correct BP measurements!

Further reading about BP and people with dwarfism:

Other medical tests that are not appropriate for people with dwarfism

BMI

BMI is not appropriate for determining ideal weight for people with dwarfism. See https://ksginfo.org/bmi-and-people-with-dwarfism-what-you-need-to-know/. BMI is sometimes used to calculate other tests results.

DEXA Scans:

Make sure you are positioned correctly for a DEXA Scan: Improving accuracy of a DEXA scan for bone density: https://tech.snmjournals.org/content/jnmt/51/3/167.full.pdf

Common errors when taking DEXA scans: https://ce4rt.com/rad-tech-talk/dxa-scan-errors-do-you-know-these-common-sources/

Biases in algorithms used in medical calculations such as kidney functions, DEXA scans, and COPD Diagnosis:

https://www.consumerreports.org/medical-tests/medical-algorithms-have-a-race-problem/ (September 2020)

Hidden in Plain Site — Reconsidering the use of Race Correction in Clinical Algorithms (June 2020): https://www.nejm.org/doi/10.1056/NEJMms2004740