1 in 5 people will have a pituitary tumor in their lifetime. 1 in 600 will have a large tumor like I had. Sadly, only 1 in 100,000 will ever be diagnosed.
Pituitary and Hormonal Difficulties: Signs and Symptoms and What you should ask your Doctor
In today’s world, doctors treat the individual symptoms, not the underlying causes. That was my history for the last six years. If many of the following symptoms are a problem for you, talk with your doctor or find a doctor who is willing to help you solve them.
- 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 relationship difficulties in conjunction with physical symptoms on this list including loss of relationships resulting in isolation, loneliness
- 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
- Carpel 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
- 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
These are some of the more common symptoms. Remember, no one symptom is proof of a Pituitary tumor but it is important to investigate further and to TRUST your own body/intuition if you do not feel right. Some of the above symptoms or a combination of symptoms without an obvious underlying cause should prompt further questioning. Continue to ask medical/mental health professionals until you feel satisfied. Keep a log/record of your symptoms and keep a log of when your symptoms developed. Ask your family, friends if they notice any changes or differences in your behavior or looks. Share your notes and observations with your doctors and mental health professionals.
If you suspect a problem you need to specifically ask your doctor for the following medical tests (and ask for exact results not normal/not normal). If they won’t, find a doctor who will:
- Estradiol (E2) Extract/Testosterone
- Somatomedin-C (IGF-1)
- PSA (males)
- Free T3
- Free T4
- Total T4
- 24 Hour urine FREE Cortisol (ideally 3 or more tests to rule-out error or hormone cycling)
Then 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 who specializes in pituitary tumors and hormonal disturbances (Pituitary Endocrinologist, Pituitary Neurosurgeon etc.).
A mental health professional may also be able to assist you and your family as you go through the struggle of medical tests and dealing with the symptoms. It is not an easy task. It is important to find a professional who has some understanding of your physical state, specialized training, and/or willingness to learn about Neuroendocrine disorders.
Feel free to ask me any questions. Although I am not a doctor and cannot give medical advice, I can help to point you in the right direction based on what I have learned.
4 thoughts on “1 in 5 people will have a pituitary tumor in their lifetime”
Thinking of you, Kevin. We know you’ll bounce back, lots of support is all here for you.
Kevin how can I speak with you. I am going through the exact experience.
Best place to find me is on Facebook in the Hypopituitary Support Group. But I will be away on vacation for the next couple weeks.
I have been through a lot, like many of us have. I belong to many support groups to fully understand my condition and what I am experiencing. Doctors just don’t seem to have that deep understanding of what we are going through. I bookmarked your message a year ago because it really spoke to me … I’m still reading it a year later.
I can say as many posts and write ups I have read, yours hits SO CLOSE TO HOME to me .
Do you speak with others? Or offer a social group? You really have a knack for explaining our situation. Thank you for that.