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Interview with Dr. Lewis Blevins: Pituitary Disorders

Hear an interview with Dr. Lewis Blevins, medical director of the California Center for Pituitary Disorders at UCSF Medical Center.

Interview Transcript


Introduction


Lewis Blevins

Lewis Blevins

Andrew Schorr:

The pituitary gland is known as the master gland. If it malfunctions, it can cause big problems in your body. The symptoms of pituitary disorders can vary greatly, one more reason to pay attention to your body. Coming up, you'll hear from a renowned expert as he shares information on the diagnosis and treatment of pituitary disorders.

Hello and welcome to Patient Power sponsored by UCSF Medical Center where we connect you with renowned experts from UCSF. Today we're talking about pituitary disorders. We're going to understand this pea-sized gland at the base of your brain and how it is a master gland. We're going to understand what are those problems, how do you get an accurate diagnosis and what are the treatments. To help us understand all that is Dr. Lewis Blevins., an endocrinologist and the medical director of the California Center For Pituitary Disorders at UCSF Medical Center.

Dr. Blevins, when I read up on the pituitary gland, it seems so small. But if it's not working right or there are benign tumors that are there, it can cause a lot of problems. What are some of those problems?

Dr. Lewis Blevins:

Well, you're absolutely right. The gland itself is about the size of a lima bean, and the problems can be big. What I mean by that is some patients grow big and become giants, as with Andre the Giant, who had a pituitary disorder known as acromegaly. Other patients have small troubles in that if the gland isn't producing enough growth hormone, for example, you can have dwarfism. There are big and small problems with the gland, pun intended obviously.

The gland is called the master gland, as you mentioned, and we call it that because it controls many of the glands in our body. For example, it exerts control over the thyroid gland, which is situated in the neck and then makes hormones that control our metabolism. It controls the adrenal glands that sit on top of the kidneys and work with our body's responses to stress. And it also controls the sex organs, testicles in men and the ovaries in women, that basically result in our sexual drive, our sexual growth and development and sexual function and reproduction, etc.

The gland also produces growth hormone, that we mentioned, and prolactin which helps with breast feeding, so it does a number of different things. You can imagine that if the gland is either working excessively or not working sufficiently, you can have a lot of different problems.

Why the Pituitary Gland Malfunctions

Andrew Schorr:

These symptoms could be so many other things. So, first of all, what is going wrong with the pituitary gland that can make it malfunction?

Dr. Lewis Blevins:

I would say the most common disorders we see in our clinic at UCSF are pituitary tumors. These are usually benign tumors. We do see occasional cancers, but usually they're benign tumors that arise from one of the cells of the gland and either do not produce a hormone or produce one of the different hormones in excess and then overdrive one of the other glands.

Some patients have cysts of the pituitary glands or inflammation of the gland that don't overproduce hormones but can suppress hormone function. Other patients have hemorrhage of the gland, autoimmune destruction, destruction of the gland during pregnancy or some other disease process spreading to the pituitary that affects its function. It's a wide spectrum of disorders that can affect it.

In summary, what we see with the gland are either tumors that overproduce hormones or lesions that either cause underproduction of hormones or no change in hormone function whatsoever.

Andrew Schorr:

Now, when we use the word "tumor" people think cancer and it's going to spread all around your body. That's not what we're saying, right?

Dr. Lewis Blevins:

Generally speaking, no. We probably see of all pituitary tumors probably less than 0.25 percent of those are cancerous. We do see cancers on occasion but they're extremely rare. Usually we're talking about benign tumors that do not spread to other sites in the body. As a consequence, they may present with local symptoms or symptoms due to affecting the different hormone systems in the body. The local symptoms include things such as headache, visual loss, for example. And, as you know, thousands of people have headaches due to all sorts of different reasons. Some of those headaches are due to pituitary tumors. So, for example, patients who have headaches probably need to be evaluated or it at least needs to be on the radar screen that your headaches may not be migraine or cluster or stress. They might actually be a tumor.

Why Disorders are Underdiagnosed

Andrew Schorr:

Dr. Blevins, so from the symptoms that can happen, which so varied, it can be so many other things, it would seem to me that when somebody has weight problems or a woman's period stops or a whole variety of other things you described, a doctor, their primary care doctor is going to go through like 25 other things and maybe not even think at all about a pituitary tumor or some other malfunction at the pituitary gland.

Dr. Lewis Blevins:

Well, that's absolutely correct. I think that one of the problems with pituitary disorders is that, as you mentioned, symptoms are nonspecific. For example, weight gain can be caused by a dozen things. Many of the pituitary disease processes cause weight gain. Fatigue, almost all pituitary problems can cause fatigue, and that can be caused by about every disease known to man.

It really behooves the doctor to sort of consider pituitary diseases in the list of possibilities, but unfortunately the exposure to endocrinology in medical school is very little during the first and second years and then only occasion throughout the third and fourth years. And as people get into their training after medical school if they have an occasional patient with endocrine disorder maybe they learn something about the disease process, but generally speaking most physicians do not have a great exposure to endocrinology, and I think that contributes to the fact that they disease processes are really and truly underdiagnosed.

Andrew Schorr:

How much underdiagnosed are we talking? I understand it's diagnosed typically about 18 people out of 100,000. What do you think is the real number of people that have something affecting their pituitary gland out of 100,000?

Dr. Lewis Blevins:

We do know that, as you mentioned, 18 per 100,000 people have what we call a clinically apparent pituitary tumor, meaning that it's diagnosed. If you look at magnetic resonance imaging, or MRI studies of the brain as many as one in 10 patients will have what radiologists think could be a pituitary tumor. We do know that one in five people will have a pituitary tumor diagnosed at autopsy if they die of some other reason and have their pituitary breadloafed and looked at under the microscope, that one in five people can have a pituitary tumor, and many of those were undiagnosed during life

However, if you look at the medical records of those patients, you see that sometimes those patients had the irregular menses that you mentioned and had a prolactinoma diagnosed at autopsy. So I think that there's this wide chasm of 18 per 100,00 to 20,000 of 100,000 who are not being diagnosed because it's just not registering with the physicians or with the patients that there might be a problem.

Andrew Schorr:

This is a tremendous gap. Of all the programs I've done, I think I've never heard of such a secret, if you will.

Dr. Lewis Blevins:

Well, it's somewhat understandable, I suppose. If you think about the fact that in women, one of the more common symptoms of a pituitary tumor is abnormal menstrual periods. Unfortunately, a lot of women go to their gynecologist and say, "My periods are irregular," and the gynecologist is sitting there and saying, "Well, all of my patients have irregular periods," so they tend not to do anything about it.

Or men, another pet peeve of mine, have erectile dysfunction, and they go to the physician's office and they're given a prescription for Viagra just because it's quick and easy. The doctor can get to the next patient. What needs to happen there is the physician needs to figure out why does this man have erectile dysfunction, and then in the process of evaluating that if the testosterone level is low. Instead of just giving a prescription for testosterone, the doctor needs to figure out why the testosterone is low. If the testosterone is low and if it's a pituitary tumor, you arrive at that diagnosis rather than just simply having, several steps removed, just giving a prescription for Viagra and sending the patient on their way.

I think a lot of the missed diagnoses is that physicians are under increasing pressure to see more and more patients in a shorter period of time and to make themselves more available. Some of this is coming from Congress, some of this is coming by the virtue of the fact that we really do have a physician shortage relative to what was being predicted in the 1980s, and I think patients are getting the short end of the stick. That's leading to delay in diagnosis in many cases.

Diagnosis and Treatment

Andrew Schorr:

Well, this program is for patients. People are listening, maybe they've had some of these symptoms and with the preponderance, if you will, of this condition of the pituitary gland they may want to say, "This should be worked up further. I've been having these symptoms and they've been going on."

Dr. Lewis Blevins:

Absolutely.

Andrew Schorr:

So what is the workup? What should they be asking for when there's been no other cause?

Dr. Lewis Blevins:

I think to start with, patients should just raise the issue. Could this be an endocrine problem or a pituitary problem accounting for this, that or the other that's going on with my health. That will at least put it on the physician's radar screen and cause them to start thinking about the possibility.

We see disorders like sleep apnea, for example, that can be caused by acromegaly. I've seen a number of patients who had sleep apnea and even had surgery for the disorder. The real problem was a pituitary tumor causing overproduction of growth hormone leading to acromegaly. If you would just treat the pituitary tumor, the sleep apnea would go away.

People with hypertension, diabetes and weight gain, which is a large population of Americans out there and citizens of other countries, who probably have metabolic syndrome. Probably 3 to 5 percent of them have Cushing's syndrome caused by a pituitary tumor. Yet, their hypertension is treated and their diabetes is treated and no one makes the connection. I think that physicians and patients should sort of get together, try to see what is causing this. Is this just run-of-the-mill hypertension or run-of-the-mill diabetes or run-of-the-mill sleep apnea, or is there an underlying cause?

It really is getting back to the basics of the practice of medicine. We need to empower patients to work with their physicians to ensure that the question "why" is asked rather than "what do we do about it." You can figure out what to do after you come to the conclusion that it's a pituitary tumor or whatever the underlying disease process is.

Andrew Schorr:

This program is called Patient Power, so this is a perfect example of you the patient really advocating for yourself. You want to get to a cause. I imagine there are various blood tests looking at hormones. What about an MRI of the pituitary gland? Would that be helpful?

Dr. Lewis Blevins:

Smetimes it's helpful. I usually like to put the cart after the horse, so to speak. Ilike to evaluate patients or recommend evaluating patients with hormone studies to determine whether there's an abnormality and then proceed with the MRI. Certainly, if a patient has headaches or loses their temporal or peripheral vision, an MRI is indicated. But in patients who have other symptoms and signs, often you have to prove that there's a hormone abnormality first because the gland will show evidence of a dysfunction, for example, if it's due to a tumor or a cyst or what have you.

Sor example, a woman who has irregular menses and infertility or breast milk production or one of those three, probably should have a prolactin level done. If the prolactin is elevated and she's not on any medications known to do that, she could then have an MRI scan to look for evidence of a pituitary tumor in that setting. Or if a man has sleep apnea and enlarged hands, for example, then an IGF-1 level to test for evidence of growth hormone overproduction. If that's elevated , then you do the MRI.

I do believe in the MRI as a confirmatory tool, not as a screening tool, unless of course headaches are the principal finding.

Andrew Schorr:

Now, you have a center, the California Center For Pituitary Disorders. There's not one of these on every corner or at every hospital. So you have a whole team where you specialize in this, so this sort of evaluation is done.

And I imagine you have a lot of people who have gone maybe for years with these different symptoms and they finally get to you and you can get to the root cause.

Dr. Lewis Blevins:

That's correct. Our center is a specialized center. There are a few scattered around the country, but we're probably one of the busiest in the country and operate I think on more patients than anyone else in the country at this time, based on some market research data.

We have a team of myself as the neuroendocrinologist and the medical director of the program. Dr. Sandeep Kunwar is our surgical director and our principal pituitary surgeon. A second pituitary surgeon who is junior to him is Manish Aghi. The three of us work together with a physician's assistant and several administrative assistants and academic assistants and combine patient care, some research and some teaching as well. Our main focus is, however, patient care and delivering state-of-the-art multidisciplinary care to our patients at the center.

Andrew Schorr:

Now, you mention surgery. I've seen a video about it once. There are, I would say, fairly minimally invasive ways now of getting into the brain to get to this gland and with microsurgical techniques remove the tumor, right?

Dr. Lewis Blevins:

That's correct. I guess I've been doing pituitary disease 20 years, and it's interesting to look at the advances in surgical techniques over that period of time.

When I was in my training at Johns Hopkins in the early 1990s, the patient usually had surgery where we lifted up their lip and cut through their gum, went through the nose to get to the pituitary. It's a very painful, disfiguring operation, and generally required hospitalization for seven to 10 days after for observation and care.

Now, Dr. Kunwar and Dr. Aghi operate through the nostril using scopes and speculums and microsurgical techniques and are able to basically perform what I tell patients is the equivalent of having sinus surgery because that's the closest to what it represents. It's minimally invasive. Most patients come out the feeling like they've got a cold or stuffy nose or mild sinus problem. Most patients go home the day after surgery. Probably 10 percent of our patients stay two nights in the hospital. Very low complication rates.

Our surgeons do a wonderful job of curing the tumors, removing all the tumors, restoring hormone levels to normal, and patients usually have very good outcomes as a consequence of the surgical skill and operative techniques that we employ here at UCSF.

Andrew Schorr:

Now, I know sometimes there's sort of a radiosurgical technique and other times medicines are used to regulate hormones. So these are kind of your three approaches.

Dr. Lewis Blevins:

Yes. We do traditional operative surgery when necessary. Radiosurgery or Gamma Knife radiosurgery, conventional radiotherapy are employed for patients who have invasive tumors that we cannot remove surgically.

We have medications that we use to treat patients as well. Some patients with prolactinomas, for example, take medication instead of surgery. Patients, who have acromegaly or growth hormone producing tumors, usually have medications if they're not cured by surgery or if they're not a candidate for surgery. Then, we have other medicines for patients with Cushing's syndrome, and of course we can use radiotherapy on any of the different tumor syndromes if the patient is not cured by surgery.

Andrew Schorr:

Dr. Blevins, the bottom line, after we've talked about this whole range of symptoms, where problems with the pituitary can be pushing buttons with different functions of your body and affecting your quality of life, your growth. With these approaches, can you restore someone to a full life?

Dr. Lewis Blevins:

We can, and there's a lot of data out there that suggests that with a timely diagnosis, it is possible to restore life expectancy to normal. Many of our patients, however, have late-stage disease and their life will be shortened, but we certainly can improve their quality of life in that setting.

It's interesting when you think about the delay of diagnosis in a disorder like acromegaly, seven to 10 years, and I've seen patients who have had the disease for 20-plus years before they're finally diagnosed. The earlier we have patients come to our attention, the more likely we are to give them a normal life expectancy because these diseases do have additive adverse effects on the body.

Andrew Schorr:

So it takes us back to what you said a couple of minutes ago, and that is the patient, if they've been having these symptoms that we mentioned, and they can be so varied, and if there's no explanation that's come to the fore, they should bring up whether or not it could be hormone related, whether it could be related to their thyroid or sort of upstream from that, the pituitary gland. Do I have it right?

Dr. Lewis Blevins:

That's absolutely right. And I think the best example I can give of that is a patient I saw yesterday. One of my neurosurgical colleagues was evaluating a woman for a neurosurgical problem, and walks in the room to meet the patient and looks at her husband and it's, "My goodness, you have acromegaly. You need to be a patient too." So I was asked to come say hello, and sure enough, classic case of acromegaly. We talked about it briefly, and he said, "Well, gee, this explains a lot."

He was just the innocent bystander in the exam room and he's the one who has scheduled now an appointment and probably will require surgery as well. He had a number of medical problems. No one put two and two together and came up with that diagnosis because nobody thought about it. He didn't think about it. He'd never heard of acromegaly. His physician probably had never seen a case of it and didn't put two and two together. So it's impossible for patients to learn about every diagnosis there is out there, but I think that with the use of the Internet and patient empowerment and patients being their best advocate, it is possible to look up your symptoms online and learn about the list of possibilities of what could be ailing you and talk about those things with your physician.

Andrew Schorr:

I see you as sort of a super Colombo, super detective where you put this together. Unfortunately, it's often not done until it's gone a ways down the road. Thank you so much for explaining this to us, Dr. Lewis Blevins, endocrinologist and medical director of the California Center For Pituitary Disorders at you UCSF Medical Center. Thanks, Dr. Blevins.

Dr. Lewis Blevins:

Well, thank you. It's been my pleasure to help.

Recorded September 2010

Photo by Eric Desch

 

Reviewed by health care specialists at UCSF Medical Center.

This information is for educational purposes only and is not intended to replace the advice of your doctor or health care provider. We encourage you to discuss with your doctor any questions or concerns you may have.

Related Information

UCSF Clinics & Centers

Pituitary Disorders Center
400 Parnassus Ave., Eighth Floor
San Francisco, CA 94143
Phone: (866) 559-5543
or (415) 353-7500
Fax: (415) 353-2889

Endocrinology Clinic at Parnassus
400 Parnassus Ave., Suite A-550
San Francisco, CA 94143
Phone: (415) 353–2350
Fax: (415) 353–2337

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