Pituitary

💉 Helpful Doctors: California

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Dr. Daniel Kelly, a board certified neurosurgeon, is Director of the Pacific Neuroscience Institute and Professor of Neurosurgery at the John Wayne Cancer Institute.

Considered to be one of the best neurosurgeons in the US and a multiple recipient of the Patients’ Choice Award, Dr. Kelly is internationally recognized in the field of minimally invasive keyhole surgery for brain, pituitary and skull base tumors.

He has one of the world’s largest series in endonasal surgery with over 2000 procedures performed including over 800 endonasal endoscopic surgeries, and over 2000 craniotomies for brain and skull base tumors. His current surgical practice encompasses the full spectrum of brain and skull base tumors, both benign and malignant, treated with minimally invasive and conventional approaches.

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ℹ️ Basics: Pituitary Tumors and Headaches

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Headaches are a common complaint in patients with pituitary tumors. Although many patients presumably have headaches which are unrelated to their pituitary tumor, there are several important direct and indirect mechanisms by which pituitary tumors may elicit or exacerbate headaches. Pituitary tumors may directly provoke headaches by eroding laterally into the cavernous sinus, which contains the first and second divisions of the trigeminal nerve, by involvement of the dural lining of the sella or diaphragma sella (which are innervated by the trigeminal nerve), or via sinusitis, particularly after transsphenoidal surgery. Headache pain in these situations is typically characterized by steady, bifrontal or unilateral frontal aching (ipsilateral to tumor). In some instances, pain is localized in the midface (either because of involvement of the second division of the trigeminal or secondary to sinusitis).

In contrast to the insidious, subacute development of headaches in most patients with pituitary tumors, patients with pituitary apoplexy may experience acute, severe headaches, perhaps associated with signs and symptoms of meningeal irritation (stiff neck, photophobia), CSF pleocytosis or occulomotor paresis. Routine CT scans of the head occasionally skip the sella, hence the presence of blood or a mass within the sella may not be detected and patients can be misdiagnosed with meningitis or aneurysm. Because pituitary apoplexy represents a neurosurgical emergency, MRI should be used in patients with symptoms suggestive of this disorder. A subacute form of pituitary apoplexy has also been reported. Patients with subacute pituitary apoplexy experience severe and/or frequent headaches over weeks to months and have heme products within the sella on MRI scans.

In most instances, headaches are not attributable to direct effects of the pituitary tumor and indirect causes must be considered. Generally, indirect effects of pituitary tumors are caused by reduced secretion of pituitary hormones and are manifested by promotion of “vascular” headaches (e.g., migraine). The major exception to this rule relates to the potential for acromegalic patients to develop headaches secondary to cervical osteoarthritis. Vascular headaches may be exacerbated in association with disruption of normal menstrual cyclicity and impaired gonadal steroid secretion (e.g., from hyperprolactinemia or gonadotropin deficiency). Hyperprolactinemia, hypothyroidism and hyperthyroidism may also have direct effects, independent of gonadal hormones. Headaches are common in acromegaly, and in the majority of cases the etiology is not well understood.

Finally, drug management of pituitary tumors may inadvertently impact headaches. Octreotide results in extremely rapid headache improvement with patients with acromegaly. The rapid time course suggests it is not due to lowering of GH levels. Octreotide also has a dramatic beneficial effect on migraine and may be producing relief of headache by vascular mechanisms. Occasionally severe headaches surface in acromegalic patients after reduction or discontinuation of octreotide, as a “withdrawal” phenomenon.|

Bromocriptine or other dopamine agonists occasionally trigger severe headaches. When this occurs, it is important to recognize that bromocriptine has been reported as a cause of pituitary apoplexy, and it may be necessary to perform an MRI or CT to rule out infarction or hemorrhage within the pituitary. Once it is established that the patient is not infarcting the pituitary, it is generally safe to treat the headaches symptomatically (not with an ASA containing drug) and consider alternative therapies for the prolactinoma if the problem remains severe.

Pituitary tumor patients with vascular headaches are generally quite responsive to standard prophylactic migraine drugs (e.g., tricyclic antidepressants, verapamil and beta-blockers). It is best to begin therapy with very low-dose medication (e.g., 10 mg of amitriptyline at bedtime) and resist the impulse to escalate the dose rapidly to higher levels. Often patients have an excellent response to 10-30 mg of a tricyclic antidepressant, although it may take up to six or more weeks to reach the ultimate benefit. The choice of tricyclic antidepressant should be based upon the desired side effects (e.g., either more sedation or less sedation) The newer, serotonin-selective antidepressants are generally less effective for headaches than tricyclics, although some patients do respond nicely to these agents. In some cases it may be necessary to use combination therapy (e.g., verapamil plus a tricyclic).

From https://www.massgeneral.org/neurosurgery/treatments-and-services/pituitary-tumors-and-headaches?fbclid=IwAR2iBMjf5VNvw2_ucalXikyIZIh3dJuYu0Kk6P1jhQ2IDnDj9ubkPO4Zl9A

✍️ Day 20: 40 Days of Thankfulness

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I hope I’m not jinxing myself but today I am thankful that I haven’t had any migraines for a while.

 

It’s not “just” not having migraines, but the fact that, should I get one, there’s nothing I can do about them anymore.

 

I used to get migraines quite often, a hormone thing probably. I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.

 

There was a long period of time that I had a migraine 6 days out of the week for several weeks. By accident, a friend asked me on a Monday if I had one that day and that started me thinking – why do I have them every day except Mondays? I figured out that it wasn’t a migraine at all but an allergy headache – I was allergic to the bath oil I was using Monday-Saturday. I gave that to my Mom and those headaches went away.

 

I still often get allergy headaches. Since my Cushing’s transsphenoidal pituitary surgery, I can’t smell things very well and I often don’t know if there’s a scent that is going to trigger an allergic reaction. In church and elsewhere, my Mom will be my “Royal Sniffer” and if someone is wearing perfume or something scented, she’ll let me know and we’ll move to a new location.

 

There’s a double whammy here – since my kidney cancer surgery, my doctor won’t let me take NSAIDs, aspirin, Tylenol, any of the meds that might help a headache go away. If I absolutely MUST take something, it has to be a small amount of Tylenol only. My only hope would be that coffee from Day Thirteen. And that’s definitely not usually enough to get rid of one of these monsters.

 

So, I am very thankful that, for the moment, I am headache/migraine free!

 

 

✍️ Day 22: 40 Days of Thankfulness

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Today is the 38th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 38 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

In 2017 I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I’m not looking forward to telling my endo!

I finally got both knees replaced.  The left in 2023, the right on February 3 of this year

I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!

My mom has moved in with us, bring some challenges…

In early May of this year I got a cortisone injection in my right thumb.  Hopefully, this won’t turn into anything.

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died in the last year.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

Video: Transsphenoidal Surgery

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The Case Records of the Mayo Clinic Florida Neurosurgery featured an endoscopic transsphenoidal approach for a pituitary tumor resection.

 

Basics: Testing: Prolactin

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A prolactin (PRL) test measures how much of a hormone called prolactin you have in your blood. The hormone is made in your pituitary gland, which is located just below your brain.

When women are pregnant or have just given birth, their prolactin levels increase so they can make breast milk. But it’s possible to have high prolactin levels if you’re not pregnant, and even if you’re a man.

Your doctor may order a prolactin test when you report having the following symptoms:

For women

For men

  • Decreased sex drive
  • Difficulty in getting an erection
  • Breast tenderness or enlargement
  • Breast milk production (very rare)

For both

Causes of Abnormal Prolactin Levels

Normally, men and nonpregnant women have just small traces of prolactin in their blood. When you have high levels, this could be caused by:

Also, kidney disease, liver failure, and polycystic ovarian syndrome (a hormone imbalance that affects ovaries) all can affect the body’s ability to remove prolactin.

How the Test Is Done

You don’t need to make any special preparations for a prolactin test. You will get a blood sample taken at a lab or a hospital. A lab worker will insert a needle into a vein in your arm to take out a small amount of blood.

Some people feel just a little sting. Others might feel moderate pain and see slight bruising afterwards.

After a few days, you’ll get the results of your prolactin test in the form of a number.

The normal range for prolactin in your blood are:

  • Males: 2 to 18 nanograms per milliliter (ng/mL)
  • Nonpregnant females: 2 to 29 ng/mL
  • Pregnant females: 10 to 209 ng/mL

If Your Prolactin Levels Are High

If your value falls outside the normal range, this doesn’t automatically mean you have a problem. Sometimes the levels can be higher if you’ve eaten or were under a lot of stress when you got your blood test.

Also, what’s considered a normal range may be different depending on which lab your doctor uses.

If your levels are very high — up to 1,000 times the upper limit of what’s considered normal — this could be a sign that you have prolactinoma. This tumor is not cancer, and it is usually treated with medicine. In this case, your doctor may want you to get an MRI.You’ll lie inside a magnetic tube as the MRI device uses radio waves to put together a detailed image of your brain. It will show whether there’s a mass near your pituitary gland and, if so, how big it is.

If Your Levels Are Low

If your prolactin levels are below the normal range, this could mean your pituitary gland isn’t working at full steam. That’s known as hypopituitarism. Lower levels of prolactin usually do not need medical treatment.

Certain drugs can cause low levels of prolactin. They include:

Treatment

Not all cases of high prolactin levels need to be treated.

Your treatment will depend on the diagnosis. If it turns out to be a small prolactinoma or a cause can’t be found, your doctor may recommend no treatment at all.

In some cases, your doctor may prescribe medicine to lower prolactin levels. If you have a prolactinoma, the goal is to use medicine to reduce the size of the tumor and lower the amount of prolactin.

From https://www.webmd.com/a-to-z-guides/prolactin-test

 

Helpful Doctors: Dr. Sandeep Kunwar

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Dr. Sandeep Kunwar is an eminent neurosurgeon who serves on the PNA’s Board of Directors. He is surgical director of the California Center for Pituitary Disorders and a professor of neurosurgery at UCSF. He is also surgical director at the Taylor Bell Neuroscience Institute in the Washington Hospital Healthcare System in Fremont, CA. He opened his private practice there in 2006. He received a Bachelor of Arts degree from UC Berkeley in 1988. From 1991-2 he trained as a Howard Hughes Medical Institute Research Scholar at the National Cancer Institute, working in the laboratory of molecular biology. He went to graduate from UCSF medical school in 1993, did his residency there in neurological surgery in 1998, and joined the faculty upon completion in 1999. From 1997-98 he served as a Research Fellow in the Brain Tumor Research Center at UCSF. He was selected by renowned pituitary surgeon Dr. Charles Wilson to take over his practice upon retirement.

Dr. Kunwar specializes in gamma knife radiosurgery for metastatic and primary brain tumors, and uses the endonasal approach for pituitary tumors. His research works to improve surgical therapy for brain tumors, particularly glioblastomas. He has pioneered a minimally invasive surgical technique for skull-based tumors and has successfully applied that skill to transcranial and spine patients as well.
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He was kind enough to answer questions from the PNA. His responses follow.

• What inspired you to choose your career path?

My interest in the brain started after a personal experience. I developed amnesia after a fall when living in Chicago while in elementary school. This lead to my fascination in how memory was processed, how chemical reactions can tell us that 2+2=4. Later in life, inspired by my father who loved working with his hands, I realized that I had an interest in neurosurgery. After attending medical school and residency at the University of California, San Francisco, my research and clinical interest focused on brain tumors. I was fortunate to work closely with Dr. Charlie Wilson who inspired the pursuit of perfection and always doing what is best for the patient. It was under Dr. Wilson’s tutelage that I understood the power of hormonal health on an individual’s quality of life, the elegance of transsphenoidal surgery for pituitary pathology, and the impact a single surgeon can have. He instilled in me the concept that we must strive to do better. When he retired two decades ago, I committed myself to improving the treatment of pituitary tumors, honing not only my surgical skills (we started performing the endonasal transsphenoidal approach in 2001, eliminating the need for nasal packing and shortening the hospital stay to one day for most patients) but my understanding of hormonal health. Although I work with the best neuro-endocrinologists at UCSF, I tried to learn as much as they know to best help my patients.

• What is the primary focus of your work/research?

My main work focus has been the treatment of pituitary tumors, in improving the outcomes and decreasing the complications. For example, we have worked on techniques to maintain or improve pituitary hormonal function. The goal of preserving the thinned out, damaged gland that remains is as important as curing/treating a tumor. This includes using multimodal therapy if needed to optimize a patient ‘s normal hormonal health. In the end, these are benign tumors and the results of treatment should never be worse than the disease. We need to minimize/eliminate the risks of damaging the gland (including diabetes insipidus), meningitis, and CSF leaks; and maximize our chance of curing the tumor. Finally, it is imperative to pass these skill sets to the next generation of surgeons.

• What do you consider to be the future of your field?

In the short term, the risks of surgery will decrease and the options for multimodal therapy will increase. For example, we will see better drugs to control hormonal hypersecretion, more focused and readily available ways to give radiation therapy (radiosurgery), and more uniform outcomes among different centers/surgeons. In the long run, I hope we can regenerate normal pituitary function in those patients that have lost their function because of their tumor or treatment.

• What should patients know about your field/what deserves more recognition/awareness?

The PNA has done an excellent job in educating patients about the importance of experience and multidisciplinary groups in the management of pituitary pathology. The greatest impact in outcome is technique and experience. Unfortunately, the tools used to perform surgery have become a focus for some. This has become a marketing tool which can confuse patients and detract from the main issues which are the surgeon’s experience/outcomes and the goals of treatment.

What deserves continued recognition is early diagnosis. The key to improving outcomes for all patients in the future is early diagnosis. It was this goal that made PNA so appealing to me. With early diagnosis, cure is easier to achieve, preservation of the normal gland function is more readily possible and the overall impact of hormone abnormalities can be limited.

• What would you like to convey about yourself to your patients?

There are many very talented and accomplished neurosurgeons, perhaps fewer spectacular pituitary-specific surgeons. It is important to choose a surgeon with experience and one who understands pituitary pathology, one who can explain his or her goals, outcomes and complications and most importantly, one you feel comfortable with. I’ve had the great honor to operate on over 2,500 pituitary patients. For each, it remains the best part of my job to take time to educate them about their disease, the cause of their symptoms, the anatomy of their tumor and our goals in treating their pathology. Maximizing cure must always be balanced with minimizing risk, and having a great team to help support the process are the key to success. I would thank all the patients who have put their faith in me – it is an honor and a privilege to be part of their care.

• Why did you get involved with the PNA; what is the extent of your involvement?

Education remains the most powerful tool in improving health, and that has been on the forefront of the PNA. I got involved with the PNA because of my respect and admiration for Robert Knutzen back in 2004. I served on the board early on and have contributed to the educational information available. I fully support the PNA’s focus on patient education and in improving earlier diagnosis.

From https://pituitary.org/highlights-enewsletter-child/pna-spotlight-dr-sandeep-kunwar-2-2-2-2-2-2-2-2-2-2/

Basics: The Role of Endocrinology in Managing Polycystic Ovary Syndrome and Diabetes

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Introduction to Endocrinology

Endocrinology is a medical specialty that focuses on the diagnosis and treatment of diseases related to hormones. Endocrinologists are experts in managing and treating diseases related to the endocrine system, which includes the thyroid, pituitary, adrenal glands, and pancreas. Endocrinologists are trained to diagnose and treat conditions such as diabetes, thyroid disorders, pituitary disorders, and other conditions related to hormones. Endocrinologists also specialize in reproductive health and fertility issues, including PCOS.

Endocrinology is a complex field that requires a deep understanding of the endocrine system and its role in regulating the body’s hormones. Endocrinologists must be able to interpret laboratory tests and understand the underlying causes of endocrine disorders. They must also be able to develop individualized treatment plans to address the specific needs of each patient.

Diagnosing PCOS and Diabetes

Endocrinologists are experts in diagnosing and managing PCOS and diabetes. PCOS is a hormonal disorder that affects the ovaries, and it is characterized by irregular menstrual cycles, excess facial and body hair, and infertility. To diagnose PCOS, an endocrinologist will perform a physical exam and order laboratory tests to measure hormone levels. The endocrinologist will also ask the patient about her symptoms and family history to determine if PCOS is the cause.

Diabetes is a chronic condition that affects the body’s ability to process sugar. To diagnose diabetes, an endocrinologist will perform a physical exam and order laboratory tests to measure blood sugar levels. The endocrinologist may also order imaging tests to check for signs of diabetes-related complications.

Treating PCOS and Diabetes

Once the endocrinologist has diagnosed PCOS or diabetes, they will develop an individualized treatment plan to address the patient’s specific needs. For PCOS, the endocrinologist may recommend lifestyle changes such as weight loss, exercise, and dietary changes to help manage symptoms. The endocrinologist may also prescribe medications to regulate hormone levels and improve fertility.

For diabetes, the endocrinologist may recommend lifestyle changes such as weight loss, exercise, and dietary changes to help manage blood sugar levels. The endocrinologist may also prescribe medications to help regulate blood sugar levels. In addition, the endocrinologist may recommend regular check-ups to monitor the patient’s progress and to adjust the treatment plan if needed.

Conclusion

Endocrinology plays an important role in managing PCOS and diabetes. Endocrinologists are experts in diagnosing and treating these conditions, and they are trained to develop individualized treatment plans that address the specific needs of each patient. By working with an endocrinologist, patients can get the help they need to manage their PCOS or diabetes and achieve their health goals.

Endocrinology is a complex field that requires a deep understanding of the endocrine system and its role in regulating the body’s hormones. An endocrinologist can help patients with PCOS and diabetes manage their conditions and achieve their health goals. By working with an endocrinologist, patients can get the help they need to manage their PCOS or diabetes and achieve their health goals.

From https://www.diabetesincontrol.com/the-role-of-endocrinology-in-managing-polycystic-ovary-syndrome-and-diabetes/

Research Study for Patients Diagnosed with Cushing’s Disease and Their Caregivers

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We’re looking for caregivers to loved ones diagnosed with Cushing’s Disease or patients diagnosed with Cushing’s Disease to participate in a research study.

✅ Who: Patients and caregivers of loved ones

⏳ What: 30-minute Online Survey

💰 Compensation: $60.00

Sign up here: https://rarepatientvoice.com/CushingsHelp/

 

When It Looks Like Cushing’s But It Isn’t

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From Pituitary World News:

We are delighted to welcome Dr. Leena Shahla to the Pituitary Podcast. She is the director of The Duke Pituitary Program. Today she joins PWN co-founder and medical director of the California Center for Pituitary Disorders at UCSF, Dr. Lewis Blevins, for an in-depth discussion about pseudo-Cushing’s syndrome.

In the Duke Health web portal, Dr. Shahla says endocrinology captured her heart because it combines medical science with unique challenges. “My passion for solving puzzles drives my deep interest in pituitary disease, the most complex area of endocrinology.” You can read more about Dr. Shahla, her practice and background here.

This is a fascinating discussion about a complex, often misunderstood condition by two of the leading experts in the field you won’t want to miss it. Pseudo–Cushing’s syndrome or non-neoplastic hypercortisolism is a medical condition in which people with this disorder display the signs, symptoms, and abnormal cortisol levels.  Common causes can include  pregnancy, alcohol use disorder, morbid obesity, polycystic ovarian syndrome, end-stage renal disease, severe major depressive disorder, and poorly controlled diabetes.