My Diagnosis Story: Hypopituitarism--Rare Condition, Tough Diagnosis

In 2007, I was hospitalized for septicemia, resultant from cellulitis that was stubborn and didn't want to respond to antibiotic treatments. The sepsis, another name for the condition septicemia, is also sometimes referred to as 'blood poisoning', though that's a bit of a misnomer. As my doctors informed me: The blood actually becomes so infected, the blood itself carries the waste of the infection and the infection throughout the body, thus the body becomes toxic, or 'poisoned'.

During that hospitalization, I received high-dose antibiotics, four different kinds, three and four times per day. One of those antibiotics was new on the market, and was extremely potent. It is believed that either the sepsis or the antibiotic, or both, caused damage to my pituitary gland in the brain. Or as my endocrinologist put it, "...blew out your pituitary."

Diagnosing Hypopituitarism

The symptoms I experienced began almost immediately after being discharged from the hospital in 2007. At first, I did great, felt better than I had in months, but it wasn't long before some persistent health issues started to impact my life. The first symptoms were mild: I was tired all the time, had no energy; muscle aches and pains with no known cause; joints discomfort and pain; headaches; weight gain that was completely unexplained by diet changes or activity level.

The First Symptoms of Hypopituitarism

The first diagnosis and treatment was for hypothyroidism. My endocrinologist tells me it's common for hypothyroidism to be the first symptom, since the thyroid gland usually produces the first noticeable symptoms, including depression, weight gain, irritability, muscle aches, and other. Many people have thyroid problems, and not all of them'"in fact, most of them'"have perfectly working pituitary glands, but since the thyroid gland's function is controlled by the pituitary, it makes sense that hypothyroidism sometimes is a symptom of hypopituitarism and not a condition in and of itself.

By 2007, they already knew my thyroid gland was not functioning properly, but we wouldn't find out until 2011 the real reason why. I was on 1.25mcgs of Levothyroxin, and my TSH (a hormone that's measured to tell how well the thyroid is working) was at nineteen (19). It's supposed to be around two (2) for most people, but a maximum of about five (5). I currently take 2.75mcgs of Levothyroxin, but for a long time, it took 3.25mcgs to get the TSH down to the right level.

If you have hypothyroidism but still suffer with symptoms of the condition, it's possible you might still be suffering from an undiagnosed pituitary gland problem. It can't hurt to ask your health care professional if this is something about which you should be concerned.

The Second Diagnosis of Hypopituitarism

After treating the hypothyroidism, I still had problems with my health that weren't corrected by the treatment. My primary care doctor said, "Well, sometimes you have symptoms of Addison's Disease and other times you have symptoms of Cushing's."

Both diseases affect the adrenal glands, either causing too much of the natural steroids cortisol to be released (Cushing's) or not enough cortisol is released (Addison's). When too much is released, a person constantly stays in the 'fight or flight' mode, with adrenaline pumping nonstop. With too little, the person crashes, can't heal, and the body can't repair itself, not to mention they are ill prepared to handle any kind of stress.

A CT scan (read more about that here) was performed, but my adrenals were normal, as was my abdominal cavity. I had a few things the CT found that were not related to this condition, but my adrenals were fine. Later, I was diagnosed with secondary adrenal insufficiency (in February 2011).

Starting to Put Together the Hypopituitarism Puzzle

So after a positive lab test for thyroid and a positive lab test for adrenal insufficiency, and both adrenals and thyroid being controlled by the pituitary, it became evident that maybe we're dealing with a pituitary problem. Throw in the fact my body retains fluids and swells sometimes severely and understand that the pituitary controls the antidiuretic hormone production that regulates the kidneys and the body releasing fluid, it became obvious that we were probably dealing with a pituitary issue.

Throw in the fluctuating blood press (sometimes as high as 189/110 and sometimes as low 70/39), fluctuating body temperature (sometimes as low as 96.9 and sometimes as high as 102.5), fluctuating pain syndromes and other things too numerous to mention here, and the diagnosis is pretty much confirmed.

But to make sure we were on the right track, we performed an ACTH stimulation test, to see if my adrenals really were working. The test clearly showed they could, when properly stimulated, work just fine. The problem was that they were not receiving enough ACTH. What controls ACTH production? That's right! The pituitary.

The Long Road to Diagnosis of Hypopituitarism

So that's how, after four plus years, I finally received a definitive diagnosis of hypopituitarism. It took excluding all other possible conditions, then treating the remaining ones one by one to see what symptoms were still left (and what new ones cropped up) before we finally managed to see the right doctor who could do the right tests and get to the right diagnosis.

The bad news is, there's not much that can be done about hypopituitarism that will result in a cure. There's no fix for it, no surgery, nothing specific that can be done. Every person with hypopituitarism can have different symptoms and problems, so treatments for it can vary widely. The main treatment is to replace all the hormones that are stimulated or controlled by the pituitary with medication, synthetic or biological, and manage the symptoms when they rear their ugly symptom heads.

I currently take twenty-two pills per day, every day, and then have a few pills I take only as needed, and will probably have to take them the rest of my life. On a good day, the pills act like they are supposed to and I feel almost human. On a bad day, I still writhe in pain and dulled senses. I now have much better good days than I had before diagnosis and the bad days aren't nearly as bad as they once were, and that is a blessing.

The Hypopituitarism Moral

The moral of my diagnosis story is this: If you really know something is wrong with you, if you have thyroid problems, adrenal problems, kidney problems, and things aren't getting better with treatment, you too might have something wrong with the HPA axis - hypothalamus, pituitary, adrenals'"HPA. Don't let just one doctor tell you there's nothing wrong.

So many times when seeking a diagnosis, I almost gave up. I believed that everything I knew to be true wasn't the way I thought it was. I let two different doctors talk me into believing that I just needed to get up and move around more, get more exercise, eat better, or that I was depressed. I wasn't depressed, but I took their antidepressants anyway and they didn't change anything. I wanted to get up and move around me, but it hurt to do so, not a little, but a lot. I knew better, but I was so discouraged, the only thing I knew to do was give up.

My family and friends helped me through it, reminding me every day of who I was and who I would be again, promising me that there was, absolutely was, a diagnosis out there for me. I am so grateful we have finally found it. So if you know something is wrong with you too, don't let them tell you that it's your diet or your weight or your lifestyle or your age... you know! We know! We know our bodies and we know when something is wrong. Keep pushing like I did, and you'll find your diagnosis too.

For more information about hypopituitarism, you can visit this website, or contact an endocrinologist who knows how to treat hypopituitarism.

SOURCES:

Personal experience, visits with my doctor, and lots of reading medical journals so the information is common knowledge to me.

National Center for Biotechnology Information, "Hypopituitarism'"Pituitary Insufficiency", retrieved April 2011. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001383/

The Mayo Clinic, website, "Hypopituitarism", retrieved April 2011. http://www.mayoclinic.com/health/hypopituitarism/DS00479