Okay..Now Where Do I Start?
By Robert Knutzen, MBA
And Annie Hamilton
Pituitary Network Association
Many of you are newbies to pituitary/hormonal disease and find yourselves in the same boat most us were rowing just a short time ago. We have attempted to shortcut the search for answers on most aspects of your diagnosis, treatment and lifetime follow-up care. There are three very distinct but equally important aspects to being a hormonally-challenged patient. Dealing with the medical community is interesting and sometimes confusing. The presence of a tumor takes on an overriding importance to some physicians. However, your quality of life may be severely compromised, not by the tumor or its removal, but by your doctor's failure to monitor your hormone replacement. You need proper medication in carefully measured doses, appropriately spaced check-ups and, very often, professional mental health care. This organization aims to help you land on your feet. We don't believe it is in your or your family's best interest to spend the rest of your life living on disability insurance or on other public assistance. You deserve to be well and whole, and it is possible with determination.
By now you may have read and heard so many conflicting estimates of the rarity or severity of pituitary disorders and tumors, that it can be very difficult to discern the truth. The Pituitary Network Association has, since its founding, attempted to distinguish fact from fiction. We have even commissioned a study by some of the world's leading endocrinologists, neurosurgeons, pathologists and medical mathematicians/statisticians to arrive at a reasonable, recognized starting place. "The Prevalence of Pituitary Adenomas, a Systematic Review," by Shereen Ezzat, MD at the University of Toronto; Sylvia Asa, MD, Ph D. at the University of Toronto; William Couldwell, M.D. at the University of Utah; Charles E. Barr, M.D., M.B.A., at Roche Laboratories, Inc.; William E. Dodge, M.S., MBA; Mary Lee Vance M.D. at the University of Virginia; and Ian McCutcheon, M.D. at the University of Texas, does exactly that. We DO have the answers and no valid evidence exists to the contrary.
This study was supported by the Pituitary Network Association, and published by the American Cancer Society in June 2004.
In reviewing dozens of studies over the past 80 years on the prevalence of pituitary tumors alone, (not counting Addison's disease, Sheehan's syndrome, inflammations, enlargements, etc.) our experts reached a consensus: at least 16.7% of the population develops or harbors pituitary tumors. Some have estimated nearly 30% of the population. (But, as we say here, it's 1 in 5.) The clinical significance of many of these tumors is the only major issue that divides the true experts. Clinical significance, however, only reflects what individual doctors find to be significant (which does not mean it's accurate). If your own doctor, for instance, does not believe that headaches, mood swings, apathy, mental/emotional disorders or sexual disorders/dysfunction are related to pituitary tumors, he or she may classify your tumor as clinically insignificant and therefore to discount it. To us as patients, after nearly 15 years of interacting with hundreds of thousands of other patients - that is hardly an acceptable conclusion. All pituitary tumors, in the absence of clear and absolute proof of another medical cause for the patient's discomfort, must be viewed as significant.
We share some patients' information with various world experts in medicine, and we collect and read the experts' opinion and findings from around the world. Yes - headaches, joint pain, mental/emotional disorders, sexual dysfunction, and eating disorders are very often related to pituitary tumors/hormonal disorders. The overwhelming numbers of pituitary patients are not hypochondriacs nor are they "crazy". Sick? Yes. In need of expert care? Yes. Can they improve their quality of life? Yes. Will they live? Certainly.
Getting a correct diagnosis is critical and too often very difficult. Pituitary medicine is the "miracle" branch of hormonal health care. It is hard to believe, but the small, non-functioning tumors deemed clinically insignificant by the uninformed, often will, in a very few months or years, "miraculously" turn into Cushing's disease, acromegaly or something else. Usually to the patient's detriment, often causing irreversible damage. Nearly always, this happens due to an incorrect diagnosis, resulting in incorrect treatment, by someone who didn't take the time to be curious enough.
As a rule, always get, at minimum, a second opinion. Without exception, the opinions must be from experts. In other words; a general practitioner/run of the mill doctor probably isn't a pituitary expert. They may wear a white lab coat and have an MD but they probably don't specialize in the right field of health care. Never deviate from this rule. It will come back to haunt you.
For patients and their families and friends, pituitary disease is much like watching a slow-moving train wreck – one that your average doctor seems either indifferent to or incapable of preventing, understanding and treating appropriately. For that reason, you alone must take responsibility for finding the right doctor, and receiving the correct medical diagnosis. You must be persistent, informed, polite and determined. Opinions rendered by non-pituitary related medical experts should be viewed with skepticism and warrant a second or third opinion. If you are among those who prize convenience, and feel you must see a doctor, any doctor, close to home, you probably aren't ready for the journey necessary for treatment.
Both on our web site www.pituitary.org and other places in this book, you will find the signs, symptoms and even the tests needed to correctly diagnose your disorder. There is no alternative to reading up on yourself; only you know yourself!
Do not try to be your own doctor, but be aware that a physician who is worth his or her salt appreciates working with a well-informed and cooperative patient who shows every sign of wanting to get well, asks questions and listens to the input given.
Try to not get discouraged, and never give up. The average time between onset and diagnosis for a pituitary patient is extraordinarily long. With your help we will create sufficient awareness in the medical community and the public to reduce this time from an average of about seven years to one or two! Practitioners normally use the term "benign" to differentiate non-cancerous from cancerous tumors. This does not necessarily mean harmless or of little importance. It may not be your tumor that kills you -it may be any one of a hundred disorders, from cancers to stroke, that follow a pituitary tumor. It's important to note that the benign tumor is often a warning that other disorders are soon to be on your doorstep and that you need treatment.
Most patients seek help and a diagnosis for many years, usually asking for medical help from family doctors, gynecologists, internists, neurologists, chiropractors, neurosurgeons and others. In far too many cases, medicine is prescribed, treatment is recommended or the patient is simply told, "There is an incidental finding of a micro-adenoma, but don't worry, it is too small to be concerned about!" That is when you know that you are not in the office of an expert and you must find a new doctor.A large number of both prolactinomas and Cushing (ACTH) causing tumors, for instance, are too small to even be seen on an MRI. (30% or more don't show up at all). An MRI is not the ideal way to diagnose a pituitary tumor. Your doctor should give you a physical exam, take a detailed medical history with a complete current condition, and use blood tests (sometimes urine also) or sputum (spit) to aid in diagnosis. An MRI (with a contrasting agent) is ideally used to determine the size and direction of growth of the tumor; a CAT scan just doesn't have the same value or accuracy.
And yes, you can protect yourself. In addition, medical science is making rapid strides towards helping us. However, even good information travels slowly in the medical community, so your family doctor may not know about these advances for years after their discovery. It is up to you to stay informed. That is why the PNA was started.
As with a complete and correct diagnosis, it is imperative that you be treated with the absolute competence of experienced endocrinologists, surgeons and radiologists, so you can be cured. That means, to get you back to the state of hormonal balance you enjoyed before the onset of your disorder. Sometimes this entails surgery, pharmaceuticals, radiation therapy or any combination of the three.
That being said; these experts can hopefully cure and/or control your disorders, but more than likely you'll be a patient of some sort for the rest of your life. To get your blood/hormone readings into a normal range requires one set of skills; to repair your life and put your house in order is another skill set altogether, and one too often overlooked until very recently even by the very experts we admire. (They are now changing their opinions and recommendations, precisely because they are scientists, with an open and curious mind, welcoming new findings, opinions and knowledge.)
We also firmly believe that an appropriate treatment regimen must include the nurturing of the mind. It's been understood throughout history, from Hippocrates to Dr. Harvey Cushing, that in the treatment of the body for various illnesses, one must not overlook the importance of caring for the mind. Earlier in this text, pituitary/hormonal disorders are likened to a slow-moving train wreck - and the damage can be every bit as dramatic and catastrophic. If you were to look carefully behind the door of each pituitary/hormonal diagnosis, you might find patients with shaky marriages, unstable friendships and family relationships, career lows, unfinished dreams, a collage of physical and psychosocial complaints, eating disorders, chemical dependencies, a history of depression and feelings of lingering worthlessness and apathy. It's important to understand that beyond diagnosis and treatment, the patient must be solely responsible for the repair of these issues. This is done with therapy, pharmaceuticals, journaling, exercising and nutrition.
Reaching out to others in similar circumstances is helpful and recommended, as long as the environment remains positive. Letting go of lingering anger is an important part of moving life forward, as harboring negative feelings will breed anxiety and anger. Those feelings can not only lead to further illness, they poison everyone around you. This means different things to different people; for some it may be as simple as forgiving your doctor for not diagnosing and treating your disease early enough for your life to have a better quality. For others, it's creating an understanding within your family that allows you to get well on your own time while keeping relationships intact. These are personal and individual issues and shouldn't be dismissed.
The treatment, then, is far reaching and may touch on many seemingly unrelated issues in both body and soul. First and foremost; without accurate diagnosis your treatment may be worthless. Your endocrinologist will advise you on medication, surgery and radiosurgery as needed. At all times be aware that ONLY a highly trained and experienced physician and surgeon or radiologist is good enough. A referral to "the best doctor in town" may not be sufficient. You may have to go out of town or out of state or province in order to find the experts required. Careful treatment/examination could/should include a bone scan, dermatological evaluation, maybe a colonoscopy and most definitely an ophthalmologic exam, thorough, being the operative word!
Each case seems to be different. There are no quick fixes or cookie cutter approaches yet available for pituitary treatment.
It is logical that insurance carriers struggle against paying claims for two reasons, both of which are critical to understand in order to receive treatment, as well as for practical reasons, such as getting your doctors paid.
1) Insurance carriers earn money based on reserves required to pay claims on behalf of their policyholders. When the claims paid are less than the funds pooling in, that yields a profit. When claims paid are greater than funds pooling in, there will be a shortfall, which presents business issues for the insurance carrier, their financial holdings and stockholders. It's commonplace for carriers to 'hang on to claims' for as long as possible, as the longer the funds are allowed to sit in reserves, the more money will be earned on the funds that are pooled. Many states have enacted legislative measures to ensure that claims are paid in a timely fashion (Medicare claims must be paid within a few weeks!) or the insurance company will be subject to fines and penalties. The rules differ from state to state but it's not unusual for doctors in rural areas to reject insurance contracts unless they obtain favorable financial terms in writing, up front. What this means to you, as a pituitary patient, is that you will, without a doubt, have to fight to get your claims paid.
2) Few doctors truly understand pituitary/hormonal disorders and the same is true of insurance carriers. They must understand fully what they are paying for and your job is to inform them fully so they can help you. Much of the headache can be eradicated up front by taking a few simple steps: 1) have a copy of your insurance policy sent to you and read through the entire document, fine print and all. Knowledge is power, especially where insurance rights are concerned. 2) Obtain preauthorization in writing for any and all procedures up front, from both your insurance carrier as well as any third party administrator in charge of claims processing. 3) Ask your doctors for a list of codes he or she will be using and submit them to your carrier with an explanation as to what each means. 4) Keep a list of state and federal authorities who can jump in and help when you need them. (PNA members can access thiseasily through our website at www.pituitary.org)
Don't forget to copy HR Directors when you write appeal letters. Their job is to handle insurance issues for their companies and group insurance policies renew on an annual basis. For policies of companies that are problematic, many companies will terminate contracts to get more favorable arrangements for employees. (The squeaky wheel gets the grease, so start squeaking!!)
You will often find that your insurance policy does not allow you to be treated by experts. Ignorance of the severity of the issues often stands between you and proper treatment. The failure of your insurance provider to understand medicine is not your fault. Therefore, it may be necessary for you to copy pages of information from this Resource Guide to help your insurance carrier understand what you are dealing with.
In each state in the US, and we hope in most provinces and countries there is an insurance commissioner or an appeals board that you can turn to for help. You may need an attorney to help you -not to file a lawsuit - but to negotiate on your behalf with the powers that be in order to ensure that you receive the best possible and most cost-effective treatment. Keep in mind that it is far less expensive to treat you correctly once, than haphazardly and incompletely treat you multiple times, often with dreadful results. Thousands of patients have been misdiagnosed (or under-diagnosed) and mistreated (or undertreated) multiple times, with financial, physical and emotional costs that are overwhelming to patients, to their families and friends, to employers and to society in general.
OUR ADVICE IS: FIGHT FOR YOURSELF. YOU MUST BE YOUR OWN ADVOCATE!
Rest of Life Care
With appropriate treatment and therapies, there is no reason why you should not live a long and happy life. In order to achieve this very commendable, yet achievable goal, it is imperative that you form a "rest of life" team of experts to keep an eye on you after the acute phase of treatment is over. The "thought leader" should be your endocrinologist. (You may only need to see him or her every year or two.) Your family physician should be kept in the loop regarding your treatments and he or she should coordinate notes and records with your endocrinologist as well as with the doctors who care for the other areas of your health, since any part of your body may affected by pituitary/hormonal disease (eyes, sexual health, emotional life, heart/lungs, skin, teeth, virtually everything). Check for cancer, regularly (breast, vaginal and prostate cancer in particular). Leave nothing to chance.
One aspect of pituitary/hormonal disease that is often overlooked, even by those with the very best of intentions, is mental/emotional health. It is a subject about which a few doctors know a lot, but most know very little. It is an issue of immense importance to you, your family, friends and society in general. It does not do anyone any good to "cure" you (chemically/hormonally) if you don't also get well enough to function normally and rationally for the rest of your life! You are entitled to enjoy your life, job and family, and function as you did before. There is no shame in taking properly prescribed medicine which allows you to be calm, relaxed, sharp and functioning at normal speed. Paying attention to the well-being of your family relationships, career, and general social interaction is extremely important and must be a part of your recovery plan. Bridges which you may have thought were burned behind you forever can be rebuilt and relationships resumed.
Seek the help you need, from experienced professionals in all fields, and know that a pituitary/hormonal disease or tumor is NOT the end of the highway, merely a fork in the road. And, as Yogi Berra said: take it!