A Plea from a Patient Advocate to Doctors and Patients of Pituitary Disorders

on 02 1, 2010

Sharmyn McGraw

I’m pleased to feature this article by guest author Sharmyn McGraw. As a thriving survivor of Cushing’s Disease, a life-threatening pituitary disorder, Sharmyn has personal insight into the plight of patients seeking health with the odds stacked against them. She has facilitated the nation’s largest Pituitary Patient Support Group, under the direction of Daniel F. Kelly, M.D. at the Brain Tumor Center at St. John’s (www.brain-tumor.org) in Los Angeles for over 9 years, educating both patients and doctors about pituitary diseases and the patients who have them. For Sharmyn’s story and more information about hormonal disorders, visit her website: Hormones 411

The Road To a Healthy Recovery – What Does That Mean?

Over this past month, I have had a lot of calls and emails from people seeking my suggestions on how to ask their doctors  about getting tested for a possible pituitary disorder. Others have asked me why they are not doing better, now that they have had surgery.

Well, this is the toughest part of being a patient advocate. It’s sad, depressing and frustrating to hear many horrible stories of doctors that won’t even give their patient the benefit of the doubt and test them for a pituitary hormonal disorder. Or, I hear that the medical professional did an improper evaluation and started the wrong line of treatment and the patient doesn’t know any better. So six months or a year later they are worse off than they were a year ago and the doctor blames the patient for his/her mistakes. The worst of it is when I hear a patient tell me they have had surgery, but they are not feeling better, and their doctor tells them that once the surgery is done, from there on out it’s not the doctor’s problem… OH MY GOD PEOPLE, let’s stop the madness! It doesn’t have to be this way!

I recently heard from a woman back east who said she had pituitary surgery for Cushing’s disease. She is not feeling better eight months after surgery. I asked her:

Q. What were your cortisol levels after surgery?
A. I don’t know.

Q. Are you on steroids?
A. Yes, my endocrinologist said I will need them the rest of my life.

Q. Why? Did your surgeon take your entire pituitary gland? What size was the tumor?
A. I don’t know if the surgeon took my entire gland and I don’t know the size of the tumor, but my endocrinologist told me I will have to be on steroids for the rest of my life.

Q. What did your neurosurgeon tell you after surgery?
A. That everything went well.

Q. That means nothing to me and it should mean nothing to you. Did you read a surgical report or the pathology report?
A. No.

Q. Have they tested all your pituitary hormones since surgery and when did you last do a 24-hour urine test to measure your cortisol levels?
A. I’m not sure if they have tested my hormones but I have not done a 24-hour urine test since before my surgery.

Okay, do you think there is any reason why this patient is not feeling better after surgery? Absolutely!!! I’d be more surprised if she told me she was feeling better. First of all, I don’t blame her completely because her doctors should have educated her, but if she had taken responsibility for her health, she would have known important information to help her get proper follow-up care following her surgery.

I am not blaming her doctors completely either. We need more public awareness, and the media needs to help us communicate the prevalence and seriousness of pituitary diseases. I believe if we educate the public, it will force the medical community to step up to the plate and educate themselves about pituitary hormonal disorders.

So let’s dissect my conversation with this woman, which by the way is the same conversation that I have with far too many patients.

Q. What are your hormone levels after your surgery?
A. This is important! Regardless of the type of tumor, you should know what your surgeon did at surgery and what is happening hormonally. This will help you understand your recovery.

If the doctor starts you on hormone replacement after surgery, ask why. Make them tell you why and show you lab results. If you did not have Cushing’s, why are they giving you steroids? Are they just being cautious? Did the surgeon do something to the gland and now it’s not working? Do they think you will be on them long? Who will you need to follow up with about the use of steroids? If you had Cushing’s, did your cortisol levels drop below 4 before they started replacement? Did they test your cortisol every four to six hours? And the list goes on… But my point with this question is — know what your hormone levels are after surgery, what they should be, and why.

Q. Did your surgeon take your entire gland? What size was your tumor?
A. This is a very important conversation you have with your neurosurgeon BEFORE surgery. The goal for the surgeon should ALWAYS be to save the gland. And 95 percent of the time the surgeon should be able to save the gland and it should still be functioning after surgery. This is when you get a second opinion, if a neurosurgeon tells you they may take the entire gland. Get another opinion from someone who does a lot of pituitary surgeries. And always know the size of the tumor. Size does matter!

Q. What did your neurosurgeon tell you after surgery?
A. Everything went well??? What went well? Well because they simply took the entire gland? Well in that they got the entire tumor? Well because they’ve not done enough surgeries to know that it didn’t go well? Please make sure you know what is being said. Get a copy of your labs after surgery, a copy of the surgical report and the pathology report. Go over them with your neuroendocrinologist.

Q. Have they tested all your hormones after surgery?
A. This is really, really, really  important. Please keep copies of the results, and know what the results mean.

I understand this is a lot of work but this is not something that can be left to chance if you really want to have a healthy recovery. YOU have to know what no one is going to tell you — especially if you don’t ask.

Just because we have not done a good job as a society at educating our medical community about neuroendocrine disorders doesn’t mean this disease is any less horrific than dealing with recovery from cancer, heart disease, or any other life-threatening illness. We have to really stand up and be our own advocates. I will tell you from what I have seen first-hand for the past ten years with patients and recovery: there is only a handful or two of medical professionals who are going to really understand you and take time to educate you or be proactive with your follow-up care after pituitary surgery. So please, educate yourself!

Many blessings,

Sharmyn McGraw
Patient Advocate, Pituitary Support Group Facilitator, Published Author, Professional Speaker

Comments (1)

 

  1. Renee says:

    Hi,

    I am 41 years old and starting having problems at 14 years old with lactating. It was undetermined if I had a tumor or not and went three years without a period, my prolactin ran about 95 and at 19 had Bell’s Palsy. I have always had headaches, low energy.

    Went years with no other follow up. The last 5 years has been hell and costly with iron injections, muscle biospy’s, and everything in between. I believe that all is happening to me due to my pitutary.

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