Pituitary

🦓 Day 3: Cushing’s Awareness Challenge

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Sleep.  Naps.  Fatigue, Exhaustion.  I still have them all.  I wrote on my bio in 1987 after my pituitary surgery “I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.”

That seems to be changing back, at least on the weekends.  A recent weekend, both days, I took 7-hour naps each day and I still woke up tired. That’s awfully close to taking a whole day off to sleep again.

In 2006, I flew to Chicago, IL for a Cushing’s weekend in Rockford.  Someone else drove us to Lake Geneva, Wisconsin for the day.  Too much travel, too Cushie, whatever, I was too tired to stay awake.  I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead.  Amazing that I traveled that whole distance – and missed the main event 🙁

This sleeping thing really impacts my life.  Between piano lessons, I take a nap.  I sleep as late as possible in the mornings and afternoons are pretty much taken up by naps.  I nod off at night during TV. One time I came home between church services and missed the third service because I fell asleep.

I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending.

A few years ago I was doing physical therapy twice a week for 2 hours at a time for a knee injury (read more about that in Bees Knees).  I come home from that exhausted – and in more pain than when I went.  I knew it was working and my knee got better for a while, but it’s such a time and energy sapper.  Neither of which I can really spare.

Maybe now that I’m nearly 19  years out from my kidney cancer (May 9, 2006) I’ve been back on Growth Hormone again.  My surgeon says he “thought” it’s ok.  I was sort of afraid to ask my endo about it, though but he gave me the go-ahead.  I want to feel better and get the benefits of the GH again but I don’t want any type of cancer again and I certainly can’t afford to lose another kidney.

I always laugh when I see that commercial online for something called Serovital.  I saw it in Costco the other day and it mentions pituitary right on the package.  I wish I could take the people buying this, sit them down and tell them not to mess with their pituitary glands.  But I won’t.  I’ll take a nap instead because I’m feeling so old and weary today, and yesterday.

Eventually, I did restart the GH, this time Omnitrope.

And tomorrow…

🦓 Day 1: Cushing’s Awareness Challenge

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April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.

30-posts

Thanks to Robin for this wonderful past logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year.  More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.

 

April Fool's Day

How fitting that this challenge should begin on April Fool’s Day.  So much of Cushing’s  Syndrome/Disease makes us Cushies seem like we’re the April Fool.  Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it.  April Fools!

All you have to do is exercise and diet.  You’ll feel better.  April Fools!

Those bruises on your legs?  You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin.  That happens as you age, you know.  April Fools!

Did you say you sleep all day?  You’re just lazy.  If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks.  April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor.  You couldn’t have Cushing’s. April Fools!

This is all in your mind.  Take this prescription for antidepressants and go home.  April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What?  You had transsphenoidal surgery for Cushing’s?  You wasted your time and money. April Fools!

I am the doctor.  I know everything.  Do not try to find out any information online. You could not have Cushing’s.  It’s too rare…  April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

 

 

So now – who is the April Fool?  It wasn’t me.  Don’t let it be you, either!

📅 Rare Disease Day

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rare disease day

What am I doing for Rare Disease Day?

For me, it’s more that one day out of the year. Each and every day since 1987,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards and brochures.

Adding to websites, blogs and more that I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

Talking to anyone who will listen about Cushing’s.  I was delighted recently to meet a non-endo doctor at a clinic who actually knew about Cushing’s!

~~~

Why am I so passionate about Rare Disease Day?

I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat.

My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

Even after my successful surgery at the National Institutes of Health (NIH), a new doctor told me I had wasted my time.  Cushing’s wasn’t real.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency…

And growth hormone deficiency…

If you’re interested, you can read my bio here https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/

💉 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/