How Patients Can Help Prevent Misdiagnosis

By Tammy Mazzella, PNA

Recently a tweet caught my eye, and it reminded me about how important the right diagnosis really is. The tweet included a link to an article about misdiagnosis and how it is much more common than you think. Research shows that one in five people have some form of pituitary disease. We know that it sometimes takes years to get a proper diagnosis. The most interesting part of the story was that the problems start with lack of communication. Unfortunately, many people still consider pituitary and hormonal disorders to be rare. In most cases the patient has never heard of these disorders. In too many cases, neither have their doctors.

So, how can we get better care from our doctors? Well, if you are reading this, you have already made a good start. Joining the PNA is a great way to keep up with new breakthroughs in pituitary medicine. You will be connected to the medical experts available who have extensive experience in pituitary medicine. PNA membership also gives you access to a large community of people who understand what you are going through and can help guide you through your journey to better health. If you are not a member yet, join now! Work with us to help all pituitary patients get the attention of the medical profession and the health care industry.

Help us spread awareness about the symptoms and help other patients get an early diagnosis. You can refer to one of the most popular pages on the PNA website. It gives a list of symptoms:

      • Headaches, particularly with a sudden onset and in the center of the head

      • Sexual difficulties (painful intercourse, low libido, erectile dysfunction)

      • Depression and/or changes in mood (anger, depression, anxiety), "bipolar" diagnosis

      • Recent and or sudden onset of family, friend and/or relationship difficulties in conjunction with physical symptoms on this list including loss of relationships resulting in isolation, loneliness

      • Infertility

      • Growth abnormalities/changes especially of the hands (large fingers), feet, head, jaw and separation of teeth

      • Obesity (especially in the central area of the body), especially weight gain over a short time, rounding or "moon face", a large bump/hump on the back on the neck/back. Note: if you suddenly are unable to manage your weight with proper diet and increased activity/exercise, this is a hormonal red flag.

      • Eating disorders: excessive weight loss, gain, bulimia. (Loss of interest in food or uncontrollable urges to eat.)

      • Vision changes, including loss of peripheral vision, blurring etc., especially with sudden onset

      • Skin thinning, stretch marks, bruising easily, acne and cuts or abrasions/pimples that don't seem to heal

      • Carpal tunnel syndrome

      • Menstrual difficulties (irregular periods, discontinued, painful, no ovulation, anything not usual for your cycle), early menopause

      • Fatigue, weakness in the limbs, general muscle weakness

      • Hypertension

      • Arthritis, aching joints, osteoporosis

      • Loss of sleep, changes in sleep cycle

      • Memory impairments, poor concentration

      • Unusual hair growth (on chest, face etc.) or hair loss (falling out in clumps)

      • Skin and hair that becomes extremely dry, scaly and discolored.

      • Lactation not associated with pregnancy (breast leakage...even for men)

      • History of emotional/physical trauma and/or chronic stress

      • Depersonalization, i.e., feeling detached from one's own body/mind

This is a huge list of symptoms and even if you have one or more of these symptoms, that doesn't mean you have a pituitary tumor. However, you should immediately investigate further. Often, these symptoms are treated as individual problems and no one looks at the whole picture. Sometimes you need to step back a little for a better view. There is no one in the world who knows you like you do. Trust yourself, when you think something is wrong, take charge, and keep looking for answers until you find them. Don't give up!

Make sure you communicate clearly with your doctors. Keep track of your symptoms, make a log, and be prepared for your appointments. Don't just show up and expect the doctor to do all the work: do your part. Try to determine when your symptoms may have started; ask family and friends if they remember the onset of behavior changes or changes in your physical appearance. Look at old pictures of yourself for clues. Give your doctor as much information as you can. Help him or her treat you. Be involved in your health care. Be an active participant.

If you are not satisfied with your doctor's answer, find another doctor! If you feel like you are getting the brush off, find another doctor! Keep looking until you find a doctor who will listen to you! I cannot emphasize enough the importance of finding the right doctor for YOU. You need to make sure that there is a good fit between you and your doctor. Remember that doctors work for you, so if you are not satisfied, say so. You wouldn't hire a mechanic or contractor you don't trust and believe in, so don't stick with the wrong doctor, either.

Ask for what you think you need. Ask your doctor for the following medical tests (and request exact results, not just normal or abnormal).

      • ACTH

      • Cortisol

      • Estradiol (E2) Extract/Testosterone

      • GH

      • FSH

      • LH

      • Prolactin

      • Somatomedin-C (IGF-1)

      • PSA (males)

      • Free T3

      • Free T4

      • Total T4

      • TSH

      • 24 Hour urine FREE Cortisol (ideally 3 or more tests to rule-out error or hormone cycling).

If test results show problems or if the results are within "normal" ranges but you still have symptoms and are not getting answers you trust, then you must be seen by a physician that specializes in pituitary tumors and hormonal disturbances. These physicians are listed on the PNA website.

A mental health professional can also be a great asset. He or she can help you and your family deal with the strain of medical tests and with the struggle against the symptoms. Find a mental health professional that has some understanding of your physical state and a willingness to learn about neuroendocrine disorders. This is just as important as finding a medical professional with the same skills.

Finally, don't be afraid to ask questions. Get the information you need. The Pituitary Network Association publishes the Pituitary Patient Resource Guide. If you don't already have one, it is an invaluable tool in your quest for a better quality of life. Visit our website for more information about our Resource Guide and other tools available.

This is your life, your health. It is all about you! Take control!

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