Friday, August 20, 2010

Sheehan's Syndrome Testing As Experienced By HypoGal

HypoGal and Sheehan's Syndrome Testing
Testing for Sheehan's Syndrome (Hypopituitarism) can be extremely frustrating and expensive. First, please note that health insurance does matter. I was extremely fortunate to have PPO insurance. My PPO insurance allowed me to see almost any specialist without a referral. I can honestly say that if I had to wait for insurance preapprovals and I couldn't afford out of pocket for doctor fees, I would be dead.
If you suspect that you have Endocrine issues make sure that proper lab work is completed. Many doctors will not run anything more than standard medical labs, ie. CBC panel.

Here are some of the additional lab test you may want to request:
Cortisol Levels (drawn first thing in the morning)
ACTH (drawn first thing in the morning)
TSH ( thyroid)
Free T4 (thyroid)
Free T3 (thyroid)
LH
FSH
Progesterone
Estradiol
Testosterone
Hemoglobin A1C
IGF-1 (insulin growth factor/growth hormone)

If you are trying to find out how to interpret lab results than lab test online is an awesome resource tool.

This is where medicine becomes extremely subjective and expensive. A person can have completely normal labs and still have Sheehan's Syndrome. Almost all Endocrinologists and medical information have stated that the IGF-1 (growth hormone) is the first pituitary gland horomone to fail in Sheehan's Syndrome. However, my standard IGF-1 was always within standard medical labs and was one of my last hormones to fail.

In order to make a positive diagnosis a ACTH Stimulation Test should be given to test cortisol output. An Arginine Stimulation Test should be given to test for IGF-1. Also, an MRI of the pituitary should be done to see if the pituitary has an Empty Sella. Some people prefer to have their ACTH and IGF-1 tested with an ITT Stimulation Test. However, this test has more risk involved.

On a personal note, I was always within range on all my lab testing. I did fail both the stimulation test for ACTH and Growth Hormone.

Please be sure to ask for all copies of your labs. You are entitled to a copy of your labs results. You need to keep copies of all of your medical records.

You can read more about Sheehan's Syndrome and the HypoGal at www.HypoGal.com

Sheehan's Syndrome Experience By HypoGal

My HypoGal Story
Most of my life I have never really understood or considered what the words “chronically ill” meant. I had always related the words, "chronically ill" to someone who had a terminal disease. I had no comprehension about everyday life with a chronic disease. I had taken for granted my high level of energy, my ability to walk, talk, socialize, use the restroom and drive a car. I had no idea that after the arrival of my second daughter, Isabella, my life would take on these words, chronically ill.

Hi, my name is Lisa and I have Sheehan’s Syndrome. I hope that my hypogal story may help other women that suffer from undiagnosed Sheehan's Syndrome. This is how my story begins… I gave birth to my oldest daughter, Sarah, via C-section on January 24, 1998. It was a Friday late afternoon when my water broke and unfortunatly my OB was on vacation. After I arrived at the hospital the labor nurse informed my husband and I that my cervix had not dilated and I needed to be induced. As my contactions began, I felt that my labor pains were not normal. I screamed to the labor nurse that I was in excruciating pain and I felt that each contraction was pulling on my organs. I pleaded with the labor nurse to have an OB confirm that my labor contractions were normal. The labor nurse politely discredited my pleads. My OB OnCall did not arrive into my labor room until 6:00 AM Saturday morning. As soon as the OB arrived it became apparent that my condition was beyond her scope. A different surgeon performed my c-section and discovered that I was hemorrhaging. My gut instinct was correct and my organs were being pulled out. My daughter's umbilical cord was imbedded inside my organs. I had partial placenta accerta. Thankfully, the surgeon was able to stop the bleeding and save my uterus.

My uterus was saved and after several miscarriages I was able to become pregnant with my second daughter, Isabella. Because of my pregnancy history, a planned C-section and delivery date were chosen, March 15, 2002. Immediately after the delivery my daughter, I knew something was terribly wrong. I could feel my body beginning to fail. I began to vomit, my body temperature was too low and I was so tired. I was not aware that my body was experiencing an adrenal crisis.

One week later I arrived home with my beautiful new daughter but I never felt normal. But, what was my normal? I had just been through five years of difficult pregnancies. I had never been ill before. I thought that I must just be like all new moms, tired. But, as a couple of months passed my fatigue increased and my weight rapidly decreased, I knew my body with not functioning correctly. All of my food intake would go rapidly through my system. As the weeks continued my body became weaker and my energy level was very limited. I had so many different symptoms: extreme fatigue, depression, limited short term memory, trouble forming words, dizziness, body aches and extreme abdominal pain. I didn’t even want to list all my symptoms because it would sound like I was a hypochondriac.

Oh, my poor family and husband. I would cry at the drop of a hat and everyday life just overwhelmed me. I felt so ill and so weak. I would cry in pain but I didn't know what was wrong. My husband did what he could to be supportive. But, at numerous times I am sure he thought I had severe post partum depression and that I was indeed a hypochondriac.

I conveyed to doctors that all of my symptoms began with the delivery of my second daughter. There must be a connection between the birth of my second daughter and all of my symptoms. But, doctor after doctor, specialist after specialist that told me that I was fine. All my lab results were normal. My blood pressure was a great, averaging a low 90/60. Numerous doctors told me that I had post partum depression. I explained to doctor after doctor that I was depressed because I was ill. It became extremely apparent by December, 2002 that I was seriously ill. I was so skinny, but not healthy skinny. I was pasty white, skin and bones, too weak to lift my baby daughter and too dizzy to walk. By this time, I really didn’t care about dying. I just wanted to find out what was wrong with me. I felt utterly hopeless.

Searching for an open minded doctor with an open ear, my husband placed emergency phone calls to friends. A good friend referred me to an Internist at UCLA, Dr. Larry Froch. It was Dr. Froch that first suspected that I might have Sheehan’s Syndrome. He was the first doctor to ask me if I had ever hemorrhaged during childbirth. Dr. Froch referred me to the Head of Endocrinology at UCLA, Dr. Van Herle. At first, Dr. Van Herle questioned the diagnosis but after failing the Metyrapone test it was confirmed, I had Sheehan’s Syndrome.

Sheehan’s Syndrome is a rare disease and the treatment always needs to be balanced. My pituitary gland doesn’t signal hormones to produce and I need to take replacement medication throughout the day. I can best relate the pituitary to an automobile ignition switch. My body, like a car has all the working parts but a non functioning ignition (pituitary gland) switch. The pituitary gland is similar to the ignition of an automobile. The pituitary gland sends out operating signals throughout our body. While I am very fortunate there are medications to help replace the hormones that my body doesn’t produce, medications are never quite the same as what your body would produce naturally. My body does not act well to stress of any kind. Events such as an illness, physical or emotional stress can send my body into an adrenal crisis.

I am extremely fortunate to live in a time where I have access to information, i.e. The Internet. Without the Internet, I would never have connected to an incredible group of Sheehan’s Syndrome women. This online group has given me so much knowledge, compassion and a place to emotionally connect. From this online group I was able to find a knowledgeable Endocrinologist who specializes in the pituitary. Many Endocrinologist only specialize in Diabetes and they don't have many pituitary patients. Most doctors and Endocrinologist have never had a Sheehan’s Syndrome patient. Most medical books state that Sheehan Syndrome woman can live a, “normal life” with medication. I have never heard of or met a Sheehan’s Syndrome woman that lives a normal life with medication.

Finally I have a diagnosis, Sheehan's Syndrome. However, my dominos continue to fall. I become shorter and shorter of breath. On a daily basis I feel I that I am not receiving enough oxygen from my lungs. Very concerned and frightened about my lack of oxygen, I made an appointment with a Pulmonologist, Dr. Schiffman. Dr. Schiffman informed me I needed to use my asthma inhalers and that I may have some bronchial issues down the road. Weeks have past and my ability to receive oxygen continued. It was such an effort to breath and I felt like I was suffocating; I couldn't get oxygen. For over an hour my husband witnessed me trying to obtain oxygen. My husband feared for my life and drove me to our local ER. My Pulmonologist, Dr. Schiffman was at the ER and told my husband and I that the X-rays of my lungs were normal. He then walked my husband outside and told him I was depressed and had anxiety.

Dr. Schiffman told me he could write me a prescription for anxiety medication and that I needed to leave the ER and go home. I then proceeded to have an emotional breakdown in the ER. I told Dr. Schiffman that if I went home I would die. Dr. Schiffman then told me that there was nothing wrong my lungs and I just had anxiety. I told Dr. Shiffman I was anxious because I couldn't breath. My husband was then relentless with Dr. Schiffman that additional tests needed to be ordered. Dr. Schiffman was sarcastic and expressed with certainty that my lungs were fine but to appease us he did order a VQ Scan. From the VQ Scan I went right into Critical Intensive Care for two weeks. My lungs were filled with hundreds of small embolisms. One embolism can kill you. So, on blood thinners for life I went.

A year goes by and it is now March 2004. I am still experiencing extreme abdominal pains, especially on my lower left side. I had seen a Gastro Internal Doctor, Dr. Trenbeath for this constant extreme abdominal pain in 2003. I was told by Dr. Trenbeath that I was just depressed and stressed from being a new mom. I was insistent with Dr. Trenbeath that he must run my labs and perform a colonoscopy. So in 2003, Dr. Trenbeath performed a colonoscopy and endoscopy. Dr. Trenbeath told me that all of my GI tests were normal. During early March, 2004 I felt an extreme sharp chest pain. I believed at the time, I had another embolism. My husband then drove me to the emergency room. At the ER a CT scan showed that I had air in my abdominal cavity. Upon the doctors review of my CT scan, I was wheeled into the operating room for emergency exploratory surgery.

I awoke in a recovery room with my abdomen split open and a colostomy bag on my right side. My colon had perforated due to serve Diverticulitis. The surgeon was upset and told my husband and I that my colon shouldn’t have perforated. The surgeon couldn’t believe I had a colonoscopy a year prior. Two months go by before my abdomen wound closes. My eight itch abdominal incision had to be left open to heal naturally. My body and emotions don’t do well in the healing process. I am fortunate that two months after my surgery I was able to have the reversal surgery and my colostomy bag was removed. My youngest has just turned two. I felt blessed to be alive but robbed of my daughters young years.

My life with Sheehan’s Syndrome continues to have challenges. My weight goes up and down, my immune system is compromised and my tendency to have unexplained illness has become a way of life. I can completely empathize with those who have Fibromyalgia and Chronic Fatigue Syndrome. I have also become accustomed to life with numerous bouts of Shingles. I have a new profound frustration with our medical and health insurance system. As most would agree, our health system needs some serious changes. However, within our health system there are many dedicated, caring and intelligent people.

Life with an invisible disease can be extremely difficult at times. Looking at my appearance, you would assume that I am healthy. Almost everyone who sees me is not aware that it can take me hours to get going most mornings. And, each day can be so unpredictable. My windows for being productive are often short and sporadic. I feel that unless you have a chronic illness it can be difficult to understand my short time frames of energy.

But, who am I now? Some people have told me that I must be thankful to have learned so much from my medical odyssey. I always reply the same, no. I would love my healthy body back. I feel that so much for my life has been spent surviving and not living. I truly miss not being able to go at a moments notice, going on long walks, spending the day in the sun or being able to have shop to you drop days with my girls.

Here is a list of the top three lessons I have learned from my medical odyssey:

A person should never try to outsmart their common sense.
You should always listen to your internal voice.
A person can be seriously ill and have completely normal labs.
Every now and then, I need a "time out" for a pity party. I do try to keep my pity parties short. I often snap out of my pity party when I recall the wise words of a friend. My friend told me, "if everyone put all of their problems out on a table then everyone would happily take back their own problems. But most of all, I have learned that the old cliche, "if life gives you lemons then you learn to make lemonade," is all so true.

You can read more about HypoGal at www.HypoGal.com

Monday, August 16, 2010

HypoGal, Was Denied Health Insurance

I have a chronically ill condition and I was denied health insurance.
Even with health insurance having a chronic illness can be devastating. Most chronically ill people are denied insurance from health insurance companies. These chronically ill people are desperate for health insurance. Many individuals are too ill to work but yet have a difficult time qualifying for Medicare. Most individuals that apply for Medicare are denied the first time. Without insurance many people struggle financially with the out of control high cost of hospitals, doctors, lab work and prescriptions.

I was very fortunate that I had Cobra insurance at the time of my illness. However, I felt sheer panic as my illness continued and my Cobra insurance was about to run out. I was extremely fortunate and found out about the California Major Risk Medical Insurance Program. This insurance program is funded by tobacco taxes. In order to apply for this program you must provide California Major Risk Medical Insurance Program with a recent denial of medical insurance. At the the time I applied, The California Major Risk Medical Insurance Program had a couple of thousand slots available. After I applied to this risk medical insurance program, I was able to obtain insurance within three months. This insurance program lets you obtain insurance through numerous large insurance providers.


These Major Risk Insurance Programs started in Minnesota back in 1976. This Major Risk Insurance Program created pools from individuals denied coverage by private insurance companies and then provided state-sponsored health insurance plans for these individuals to buy into. The insurance rates were given at a higher cost than if they were able to qualify for a private plan. Currently, 34 states offer some form of risk pool, and these risk pools cover about 183,000 people.

Listed below are the States that provide a Major Risk Insurance Program:

State risk pools and where to contact them

Alabama Health Insurance Plan
Toll-free 1-800-513-1384 or (334) 353-8924

Alaska Comprehensive Health Insurance Association
Toll-free 1-888-290-0616

Arkansas Comprehensive Health Insurance Plan
Toll-free 1-800-285-6477

California Major Risk Medical Insurance Program
Toll-free 1-800-289-6574 or (916) 324-4695

CoverColorado
(303) 863-1960 or toll-free 1-866-787-9129 (M-F 8am–5pm)

Connecticut Health Reinsurance Association
Toll-free 1-800-842-0004 (M-F 9am-4pm EST)

Florida Comprehensive Health Association (currently closed to new enrollees)
(850) 309-1200

Idaho Individual High Risk Reinsurance Pool
(link is to a PDF on program)
Toll-free 1-800-721-3272 (In-state only)

Illinois Comprehensive Health Insurance Plan
Toll-free 1-866-851-2751 (in-state only) or (217) 782-6333

Indiana Comprehensive Health Association (click "guest" for access, then choose "ICHIA")
Toll-free 1-800-552-7921 or (317) 614-2000

Health Insurance Plan of Iowa
Toll-free 1-877-793-6880 (M-F 8am-5pm CST)

Kansas Health Insurance Association
Toll-free 1-800-362-9290 (M-F 8am-5pm)

Kentucky Access
Toll-free 1-866-405-6145

Louisiana Health Plan
Toll-free 1-800-736-0947 or (504) 926-6245

Maryland Health Insurance Plan
Toll-free 1-888-444-9016 (M-F 8am-5pm)

Minnesota Comprehensive Health Association
Toll-free 1-866-894-8053

Mississippi Comprehensive Health Insurance Risk Pool
Toll-free 1-888-820-9400

Montana Comprehensive Health Association
Toll-free 1-800-447-7828

Nebraska Comprehensive Health Insurance Pool
(402) 343-3574 or toll-free 1-877-348-4304 (M-F 8am-4:30pm)

New Hampshire Health Plan
Toll-free 1-877-888-6447

New Mexico Medical Insurance Pool
(505) 622-4711

North Carolina Health Insurance Risk Pool (NCHIRP)
Toll-free 1-866-665-2117

Comprehensive Health Association of North Dakota
Toll-free 1-800-737-0016 or (701) 277-2271

Oklahoma Health Insurance High Risk Pool
Toll-free 1-800-255-6065 or (913) 362-0040

Oregon Medical Insurance Pool
Toll-free 1-800-848-7280 or (503) 225-6620 (M-F 8am-5pm)

South Carolina Health Insurance Pool
Toll-free Phone 1-800-868-2500, ext. 42757, or 1-803-788-0500, ext. 42757

South Dakota Risk Pool
605-773-3148 (ask for a Risk Pool representative)

Tennessee's Tenncare Program
1-888-486-9355

Texas Health Insurance Risk Pool
1-888-398-3927

Utah Comprehensive Health Insurance Pool
Toll-free 1-800-705-9173 or (801) 442-6660

Washington State Health Insurance Pool
Toll-free 1-800-877-5187

West Virginia Health Insurance Plan
1-866-445-8491

Wisconsin Health Insurance Risk Sharing Plan
Toll-free 1-800-828-4777

Wyoming Health Insurance Pool
(307) 634-1393


Contact Information: Lisa@HypoGal.com
For additional information on HypoGal, you can go to my web site, www.HypoGal.com