the journey of a Cushing’s survivor

I’ve hit a road block yet again.

Three weeks ago I made an appointment with my endocrinologist because I haven’t been feeling all that great. I’ve been gaining weight instead of losing weight even though I’m working out and eating healthy, I feel bloated and swollen more often than not, hot flashes, significant pain in my wrist and hip and just plain ‘ole tired & lethargic.

So he ordered a panel of blood tests and everything came back normal (don’t you just love when they say that - what the hell is normal anyway? Just because it’s considered normal for some people, doesn’t mean it’s normal for my body). All except my growth hormone; it was on the low side.

He wanted to make sure that it was in fact low, so he had me do another test and sent it off to a specialist…2 & 1/2 weeks later I got a call saying that my growth hormone is in the normal range. There is nothing more frustrating than a doctor telling me there’s nothing wrong, that all my tests are normal when I don’t feel normal. It makes me feel like it’s all in my head, like I’m going crazy. But I know it can’t all be in my head because my symptoms are real.

I was talking to a friend earlier this week about my dilemma and she suggested taking a different approach to my health care - what about seeing a doctor who has holistic approach, a doctor who not only treats the symptoms, but focuses on the body as a whole?

At this point in my recovery, I don’t know that there’s any hard evidence of what’s causing my current aliments. I think my body is simply unbalanced. Personally I feel there’s a time & a place for Western medicine, but I don’t think it’s the end all, be all either. I think taking a more natural approach is definitely worth exploring at this point.

So based on a recommendation from this friend, I made an appointment at The Institute of Complementary Medicine. Their philosophy is that ‘health is more than the absence of disease; it is a state in which the body, mind, and spirit thrive in balance. Our approach to medicine recognizes that without addressing the underlying imbalances, drugs and supplements can only mask the symptoms.’

I’m excited to start this new journey and hope that it’ll help my body to find balance again. I’ll be sure to share more in future posts!

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Metabolic syndrome is just one of those unfortunate side-effects that usually goes along with having Cushing’s. For those of us who do or did have metabolic syndrome (also know as syndrome x) know that it’s a battle every day to try and curb the sugar cravings without crashing mid-afternoon.

For what ever reason, I thought the crazy sugar cravings would go away once I was cured from Cushing’s. My doctor (along with many other doctors) assured me that once the Cushing’s was gone, my blood sugar & cholesterol would go back to normal. But I still don’t feel balanced.

Over the past few months I’ve noticed a considerable increase in my craving for sugar (and any other carbohydrate). Since being in recovery from Cushing’s - going on 15+ months now - I’ve been fairly diligent about eating a balanced diet and in the last 8+ months have incorporated regular workouts into my life. Ever since I can remember, I’ve had a thing for anything sweet (my guilty pleasure happens to be chocolate) and the cravings seem to be the worst in the evening/night.

So about 2 weeks ago I started to take note of my cravings, along with the physical symptoms I was having and was a little taken back. I was eating far more sugar than I thought I was and as a result was having horrible sugar highs and lows - getting the shakes, light-headed & irritable. I knew this wasn’t normal and I felt like shit.

So I hit the Internet in search of answers and found out about metabolic syndrome. The pieces started to fit together the more I read. When we eat carbohydrates and digest them into glucose, insulin is signaled to enter our bloodstream and transport the glucose to the cells. Glucose is needed by every cell for energy. If insulin is challenged by “too many carbohydrates” or the “wrong” kinds of carbohydrates, it cannot perform it’s transport function properly. It is at this overwhelmed stage that we have become “resistant” to insulin. Glucose that cannot be delivered to the cells is transported to fat stores. A Vicious cycle occurs.

Good news is that metabolic syndrome is fairly simple to reverse. Avoid many of the refined sugars & carbs and incorporate more protein into my diet, along with my regular workouts. I know it’s sounds so simple, but being imbalanced can be caused by things we take for granted.

It’s been one week since I weened myself off the sugar snacks and have added more protein to my diet and I have to say that I do feel better. I’ll check back with you next month and we’ll see what happens…

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Most doctors agreed that cyclical Cushing’s syndrome is by far the most difficult form of Cushing’s to diagnose because it’s patterns can be erratic or the elevated levels are so mild that it’s difficult to recognize. Much of what was presented stated that both the patient and the doctor must be persistent in testing if cyclical Cushing’s is suspected.

• Realize that elevated cortisol levels can be episodic, erratic or cyclical.
• Cyclical Cushing’s should be suspected when the clinical suspicion of the syndrome if high but tests are negative.
• Needs 3 peaks and 2 troughs to establish cyclical pattern.
• One doctor suggested 28 consecutive days of either early morning collections of first urine or salivatory tests to confirm or deny cases of cyclical Cushing’s.

Many of the presenters encouraged patients to seek out endocrinologists that had a history of diagnosing & treating patients with Cushing’s. For patients who don’t have text book test results, they could easily slip through without getting a diagnosis because his/her doctor wasn’t experienced enough. The reoccurring theme throughout many of the presentations was that there’s not one test that will give a positive diagnosis every time. It was at this point they introduced the idea that diagnosing Cushing’s, whether it be cyclical Cushing’s, ectopic Cushing’s, an adrenal tumor or a pituitary tumor, is both a science and an art.

A heavy emphasis was also placed on the reoccurrance of pituitary tumors caused by Cushing’s. The statistics for reoccurrance were staggering.

• It takes an average of 3 - 5 years for reoccurrnace to appear.
• There is a 25% reoccurrnace rate for Cushing’s patients who are 5 years post-surgery.

The cause for reoccurrance is most often attributed to an incomplete tumor removal. Depending on the size of the tumor and where it’s located on the pituitary gland, it make extend into an area that is inoperable.

So what the treatment options for reoccurrance? Is there a definitive cure? Yes, there are treatment options, but there is no cure for pituitary tumors caused by Cushing’s - only remission. A second pituitary surgery is more common to treat a reoccurrance, but in extreme cases a bilateral adrenalectomy may be a more viable option. In extreme cases, radiosugery (gamma knife surgery) will be used to treat Cushing’s.

There was contradiction between the doctors on whether or not patients who had undergone treatment for Cushing’s were considered cured or in remission from the disease. Most agreed that a patient who had undergone an adrenalectomy for an adrenal tumor would be considered cured because the chance for reoccorrance was minimal to none, but were cautious to call patients who had undergone pituitary surgery cured because the reoccurance rate was higher. They preferred to use the term remission. Most of the presenters encouraged all patients effected by Cushing’s to have annual check-ups because there is always a chance for reoccurrance.

In the end it was apparent that more studies and longer studies need to be done to gain a deeper understanding of Cushing’s syndrome. There’s just not enough hard data out there that provides definitive answers one way or the other. Since the early days of Harvey Cushing, there have been great technological advances made in surgical treatments for Cushing’s syndrome, but there’s still a lot of unknowns when it comes to medication therapy.

*Note: The information I’m sharing from the Cushing’s symposium are not my personal views or thoughts on Cushing’s, the diagnosis of Cushing’s or the treatment of Cushing’s. This information is directly from the presentation that was given by various doctors that specialize in the diagnosis & treatment of Cushing’s.

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This past Saturday I attended the 2009 Pituitary Patient Symposium on Cushing’s Syndrome at the Swedish Medical Center. It was an all day event that included 6 presentations from various doctors who are highly specialized in the treatment of Cushing’s syndrome. It was a high-level symposium (at times i was lost in the medical jargon) that explored many facets of Cushing’s syndrome. Topics ranged from current treatments to future treatments of Cushing’s syndrome, an in-depth overview of cyclical Cushing’s as well as an in-depth look into quality of life for patients living with Cushing’s.

I’d like to share some of the important highlights from the symposium.

• Cushing’s is a rare and often times misunderstood & misdiagnosed disease. According to the stats provided, 2 to 3 cases of Cushing’s per 1 million are reported each year. The numbers are most likely higher than what’s reported because Cushing’s is misdiagnosed or under diagnosed.

• On average, it takes a patient 2 - 5 years to get a confirmed diagnosis of Cushing’s (sometimes it can take 5 - 8 years).
• Getting a confirmed diagnosis of Cushing’s is a multi-step process that should be done by a doctor who’s had experience diagnosing/treating patients with Cushing’s. Because Cushing’s is so rare, most doctors will never see a case of Cushing’s in their entire career. Many of the doctors described the process of diagnosing Cushing’s as both a science & an art because test results are not always black & white and the doctors may need to draw on their previous experience with Cushing’s to determine if further investigation is needed to get a diagnosis.
• To screen for Cushing’s, many of the doctors agreed on the following tests: urine free cortisol (24 hr urine collection) and a late-night salivatory cortisol (done two times). Quite a few of the doctors presented studies that showed that the dexamethasone suppression test isn’t reliable and doesn’t work.
• Surgery is still the first choice for treatment of Cushing’s. Some of the doctors presented studies with various medication therapy, but none have proved to be successful in managing or treating Cushing’s as the primary treatment.
• Doctors don’t know the root cause Cushing’s (aside from it developing from external sources like steroid medications).

I walked away with so much information and now feel like a Cushing’s warrior. In my next post I plan to share information I learned about cyclical Cushing’s and the reoccurance of pituitary tumors and the associated treatments available.

*Note: The information I’m sharing from the Cushing’s symposium are not my personal views or thoughts on Cushing’s, the diagnosis of Cushing’s or the treatment of Cushing’s. This information is directly from the presentation that was given by various doctors that specialize in the diagnosis & treatment of Cushing’s.

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I find myself saying that a lot these days. Just when I’m getting to the point in my recovery where I feel good physically, my mind starts going downhill (my memory that is).

I consider myself a rather organized person (my husband likes to call it detail natzi) and I pretty good at multi-tasking (when you’re the mother of a 5 & 1/2 year old who works full-time and also trys to manage running 50%+ of the household, you don’t have much choice other than mastering it).

At work, I’m usually on top of my game. I stay focused, organized and on task. But lately I’ve been a chaotic mess. I feel like I have the attention span of a 5 year old. I’ll forget to do things or forget appointments (yeah, that hasn’t gone over well). If there’s a task I need to get done, I have to write it down the very minute I think about it, otherwise I’ll be racking my brain 5 minutes later trying to remember what it was I was suppost to remember.

My most recent memory lapse (I like to call them brain farts) was just down right frustrating. I made a list of things I needed to get at the grocery store (yes, I actually wrote them down!) and as I get into my car, i tell myself that I need to remember to grab the cloth totes inside my trunk and bring them with me inside the grocery store. And what did I do? Forget to bring the cloth totes with me inside the grocery store.

Now take this scenario and apply it to all aspects of my life, all day, every day. Woah! Who stole my memroy and when can I get it back? I thought this was all suppost to be behind me by now? I wonder what other little surprises I might have waiting for me in the near future…

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The Swedish Medical Center, located in Seattle Washington on Cherry Hill, is hosting a Pituitary Patient Symposium on Cushing’s Syndrome on Sat. May 9th from 8:30-4:40pm. Hear from nationally-recognized experts about the diagnosis and treatment of Cushing’s Syndrome. There will also be opportunities for you to share your thoughts and experiences with other patients. Breakfast, lunch and snacks provided.

Fee: $50 per person (limited number of scholarships available call (206)386-2502 for scholarship information). To register for the symposium, please visit the health classes section located on the Swedish Medical Center website.

I encourage all of you who are located in the Seattle are to join me at this conference. It’ll be a great way to get up to date information on the latest treatments for Cushing’s and you’ll have an opportunity to meet other Cushing’s patients & survivors. If you plan to attend, please leave a comment or send me a message with your contact information so we can meet up.

I look froward to seeing you there!

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Two to three weeks after I had surgery, I started experiencing serious bouts of depression. It was equally physical as it was mental & emotional. It hit me like a ton of bricks and left me feeling totally incapacitated. I would cry uncontrollably for no reason and I had deep, mournful thoughts about the state of my life. I literally thought I was going crazy. Shit, I could’ve been the face for the Cymbalta TV ads.

I’d never experienced depression like this before. My doctor had warned me that I might experience depression after surgery, but she didn’t warn me that I was probably going to be swallowed up by a black hole. I was in a scary place and didn’t know if I was going to make it out.

It felt like I was having an out of body experience during those first few weeks of recovery. I felt so alone, even though I had family and friends who were at my side. Depression is a difficult thing to explain. You can’t make it fit into a pretty little box or expect that three sentences can fully explain the madness that’s going on in your head.

And as if dealing with the chaos in my wasn’t enough, I had to contend with the outside world, who’s views on depression are often skewed and discriminating. Like with so many metal illnesses, society is quick to overlook the serious impact it has on people’s lives and dismiss treatment all together because it’s not thought of as a real illness.

My depression was brought on by chemical imbalances in my body after I had surgery. No matter how much I tried to fight it, it was a reality that I couldn’t hide from. About two weeks post-surgery, I talked to my doctor about the depression I was experiencing and she started me on Prozac.

Within days, my entire outlook changed. The dark, gray cloud that had been looming over me was starting to disappear. The constant crying slowly stopped and the big, black hole became smaller and smaller. I started to feel like me again. I was in the early stages of my recovery and had a long way to go, but now I had my old self back and could fight the fight. So yes, I think I can say that Prozac saved my life (or at least my mind).

It’s fourteen months later and I’m still taking Prozac. My body still isn’t 100% back to normal, but one day soon it will be and that’ll be the day I can say good-bye to the Prozac and close that chapter in my life.

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I’m happy to announce that the Cushing’s Partner Program is up and running on Meetup.com.

This group is for patients and survivors of Cushing’s syndrome and Cushing’s disease and is a place where patients can partner up with survivors of Cushing’s to gain an inside perspective on the recovery journey from Cushing’s. Patients who are in the early stages of diagnosis and recovery have the opportunity to partner with survivors who can share their personal insights about their recovery journey.

This group is completely virtual so people from all over the world can join without geographical restrictions. There are no physical meet ups or meetings. We meet and communicate through email and by phone.

Most importantly, we are here to support each other in a positive way and to share our personal experiences so that it may benefit others in their recovery journey.

Cushing’s is a debilitating and lonely disease. But you are not alone. There are others, just like you who are going through the same thing. Whether you’re current reader of this website or you’re new, I encourage you to please join this group by clicking on the Meetup badge located on the right side.

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The driving force behind my blog from day one has been to share my story in hopes that it might help others in their own journey of diagnosis and recovery from Cushing’s. When I was diagnosed with Cushing’s syndrome in Nov. 2007, I struggled to find information from the patient’s point of view. My doctor couldn’t tell me how I would feel after surgery, aside from what she learned from her previous patients. I wanted a first hand experience from someone who’d been through the same thing I was going through.

I did find some online resources where Cushing’s patients shared their stories and struggles with one another. But I found the environment to be more negative than positive. I was looking for support, not company for my misery. I wanted to talk to someone who was further along in their recovery and could tell me how long it took them before they could walk down stairs pain free. Someone to support me through my journey.

In A.A. recovering alcoholics work with a sponsor to help them on their journey to recovery. The sponsor is usually someone who has been in the program for awhile and has a better understanding of how to work the program to achieve sobriety. More important, a sponsor is one of the few people who truly understand what it’s like to be an alcoholic and how to begin the process of recovery.

I think this methodology could be applied to the journey of illness, like Cushing’s. What if there was a resource that could match you up with someone who has survived Cushing’s? Or who at least started the process of recovery? This person could offer you mental and spiritual support in your journey. You would be able to learn first hand from someone else’s experience. Distance wouldn’t matter because you could trade emails or phone calls.

Anyone have thoughts on this? Would you be interested in having a sponsor or sponsoring someone dealing with Cushing’s?

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I really, really dread having a cortisol stimulation test. I know this test is the only way to see how well my body is recovering and if my adrenal gland is starting to produce at a normal level. The clinic where I have the test done also serves patients who are receiving chemotherapy and other various treatments. It’s so drepressing. When you walk in, you can feel the gloom. I know that’s horrible to say. These people are there getting treatment to save their life. But these people are really sick (the place kind of smells like death) and it freaks me out to think I was once just as sick.

More than anything I look forward to getting the test results back. I’m feeling better than I’ve felt in years and I hope it’s reflected in my results. When I see my endocrinologist, I can finally say I feel good, really good. I do feel like the worst is behind me and everyday my body gets a little stronger.

Now if I could only do something about these damns stretch marks…

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