1 in 5 people will have a pituitary tumor in their lifetime

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

Symptoms

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
  • 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
  • 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
  • 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

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:

  • 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)

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.

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Author: kmuir2723

My journey started in February of 2008 when I was rushed to emergency with blinding pain in my head. I was taken by ambulance to have a CT scan and when it came back negative I was misdiagnosed with Ice Pick Migraines. Over the years I would return to emergency a few more times for the same issue and they would just treat it as a migraine because that is what they treated it as before. Since then my body and personality has been through many changes and many more misdiagnosis. From carpel tunnel, computer elbows, rheumatoid arthritis, Gluten Intolerance and erectile dysfunction just to name a few. My memory and concentration levels were getting fading. I had little to no energy most of the time and I was losing interest in things I used to enjoy. My social skills diminished and I struggled to be around groups of people without anxiety. When I could no longer function properly sexually I convinced my doctor to run more tests. The results showed an extremely low testosterone level. I thought to myself, no big issue, they make medication for that but my doctor chose to send me to an endocrinologist to find out why. In August of 2013 I met with my endocrinologist and after numerous tests a 4 cm Macroadenoma (pituitary tumor) was discovered. The tumor was putting pressure on my Pituitary gland which in essence shut down most of the hormones in my body. I no longer had a functional adrenal system. We will never know how long the tumor was growing but the neurosurgeon estimates up to 20 years. The MRI showed evidence of scare tissue formation on the tumor from previous hemorrhages over the years. Upon review of the 2008 CT scan he pointed out the quarter size tumor that was missed. The migraines I was having was actually pituitary apoplexy or hemorrhages. I was very lucky to be alive. The surgeon informed me they lost a patient on the table the day before for the same apoplexy. My tumor was removed transsphenoidally on Oct 7th. 2013. They could only remove about 80% of it because of the proximity to the carotid arteries and optic nerves. There is a high probability it will grow back and if so, Radiation therapy is our next weapon against it. My hormones may never return to being created naturally so I am on medications for Cortisol (Adrenal system), Thyroxine (Thyroid Gland), Testosterone, (Sex Glands) and Somatropin (Growth Hormone) eventually. Since my surgery I have become separated after 23 years. It was hard but this thing changed me as a person and I cant go back to who I was before, even if I could remember who that was. I also lost my best friend of 30 years to a brain Tumor in February. He was there for me during my rough time this year and I will miss him deeply. My goal now is to help others going through this challenge and help to educate people to fight our medical system for their health. Never assume no news is good news when you don't get results of test back from your doctor. Be your own advocate. My fight continues but every day is a blessing and I chose to live it happy.

3 thoughts on “1 in 5 people will have a pituitary tumor in their lifetime”

      1. 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.

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