Posted 10/20/2017 1:29 AM (GMT 0)
Dar:
I have a 1 cm functional pituitary adenoma.
Pituitary adenomas are 99% benign. It is estimated that 1 in every 6 people have an incidential pituitary adenoma - they are usually identified when a person is having a work-up for an inrelated health issue. Bottom line: Many people have a pituitary adenoma without their awareness that causes no obsert problem or health consequence.
That said, when pituitary adenoma are troublesome (secreting excessive hormone, for example, or pressing in an optic nerve) the effects can be substantial and debilitating. Small adenomas can be more problematic than larger adenomas, depending on whether the adenoma secretes excessive hormone. Size is not the determining factor as to an adenomas’s effects.
The pituitary gland, hypothalamus, and adrenal glands are highly interrelated - referred to as the HPA axis. The HPA axis has several pivotal roles in the homeostasis and general physiology of the body. How the body’s organs (GI tract, muscles, brain, and more) and body systems (temperature regulation, metabolism, cognition and thought, blood pressure regulation and electrolyte balance, and more) are all dependent on the pituitary gland and the hormones it produces directly as well as hormones produced by secondary endocrine organs (thyroid, thymus, pancreas). The pituitary gland is called the master gland. The endocrine system is based on the workings of the pituitary gland.
To wit: There is not a cell nor organ nor body system that is not somehow influenced by the pituitary gland and the hormones that circulate.
Hormones are much more diverse and specialized that what people think of when they think of hormones. Estrogen, testosterone, and progesterone are a small spectrum of the body’s hormones. Truth is, there are hundreds of hormones in circulation.
Hormone = A chemical messenger. A hormone acts as a message carrier, providing directions to an organ as to how it is that it is to function.
Pituitary disorders are complicated and complex. There is much that medical science does not know about the endocrine system. That said, it is important to seek a physician/endocrinologist with speciality in the pituitary gland. Most endocrinologists base their practice on treating metabolic disorders. Many endocrinologists have scant knowledge in clinically diagnosing and/or treating pituitary conditions.
You would be well advised to take the time now to locates a neuro-endocrinologist or an endocrinologist with speciality in the pituitary gland. A recent clinical study found that it takes a median of 7 years before a person is accurately diagnosed with Cushing’s disorder (one subset of pituitary dysfunction). Diagnosis of pituitary failure or low pituitary function can be a long and arduous process.
The Pituitary Network Association (PNA) is a non-profit organization that is the To Go information site on pituitary disorders and pituitary adenomas. They offer physician and hospital referral assistance. There are several hospitals located on both the west and east coastlines that have designated Pituitary Centers of excellence. These are specialityninits that evaluate and treat only pituitary conditions. If you can find access to a designated pituitary center I highkly recommend the additional effort that may be required. I went to Swedish Hospital and Medical Center )mentioned in an earlier post by pitmom) and received outstanding care that was genuinely life saving. The PNA also publishes a soft back book titled “The Pituitary Patient” that I also recommend. It is a valuable resource for anyone with pituitary dysfunction.
Pituitary Network Association: www.pituitary.org
As to your specific set of symptoms, certainly your thermoregulatory oddities (your posterior torso feeling unusually hot but without observable redness; sweating; heat intolerance) could each be possibly owing to pituitary disregulation. Muscle spasms such as you describe would not ordinarily be a direct effect of a pituitary mass, but irregularities in cortisol and aldosterone could be associated with like findings.
One thing to understand . . A pituitary gland that is struggling will compensate for as long as it can as best as it can until it can no longer. The pituitary gland, with its life-essential role, does not relinquish easily. A universal finding is a wide breadth of symptoms (as hormones effect every cell and every organ, so symptoms can mimic many and similar conditions not associated with the endocrine system). Ex. Fibromyalgia, chronic fatigue syndrome, social anxiety syndrome, obsessive compulsive disorder, sensitivities to lights and sounds - all of these are often given incorrectly as diagnoses prior to an accurate diagnosis of pituitary dysfinction. The other universal finding is that symptoms wax and wane over time, ebb and flow. A person can feel relatively well one day and be relegated to the couch the next. The inconsistency in function is due to the pituitary sputtering and failing to compensate, similar to a car low on gasoline as it nears a gasoline station.
Do your due diligence in finding a credible endocrinologist with pituitary speciality and/or invest in the time to travel to a designated pituitary center. It will be well worth the added investment. A pituitary that is struggling will rarely “get better” on its own. Untreated and undiagnosed pituitary dysfunction can result in a slow and insidious loss of health and self-care, often with accompanied psychiatric instability (due to erratic hormone levels). My own life’s trajectory was significantly altered by pituitary failure that went unrecognized. Years lost that I can never reclaim.
Be a strong advocate for your needs. Read and become informed. Seek a physician with specific pituitary competency or consult with a designated pituitary center.
Best wishes in the days ahead,
Karen