the journey of a Cushing’s survivor

I’d like to thank everyone who voted for My Battle With Cushing’s Syndrome during the HealthBloggers People’s Choice Award competition. My blog placed #17 and made the Best 100.

Your support & votes help to bring awareness to a disease that is often overlooked, under-diagnosed and misdiagnosed.

I’d like to wish all of you a happy holiday and cheers to a new year!

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My two year recovery mark is rapidly approaching and I’ve been reflecting on the long journey that has brought me to today. I have an in-depth post celebrating the trials & tribulations of my two year anniversary coming very soon. For now I’d like share some of the things I’m most thankful for this holiday season.

On the first day of Christmas, my true love sent to me

A clean bill of health

Two working legs

Three less prescription pills

Four workouts a week

Five less headaches

Six less hot flashes

Seven less sleepless nights

Eight hours of sleep

Nine if I’m lucky

Ten pounds lost

Eleven plus pounds to go

Twelve symptoms that have disappeared!

I’m thankful & grateful to all of you who have supported me in this journey. And for those of you who I’ve connected with because we’ve shared a uniquely uncommon experience, you hold a special place in my heart.

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The People’s Choice Health Bloggers competition ends in one week on Dec. 15th - so there’s still time for you to cast your vote for My Battle With Cushing’s Syndrome blog. Each and every vote counts! It only takes a minute (your vote will be counted whether or not you choose to leave a comment). Click here to vote!

For those of you who have voted, thank you for your support!

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I came across an interesting new study published by the Journal of Clinical Endocrinology & Metabolism on Specificity of Screening Tests for Cushing’s Syndrome in an Overweight & Obese Population.

Widespread screening of overweight and obese adults for Cushing’s syndrome is not supported by a new study, even when one or more features of Cushing’s syndrome are present.

“Broad screening programs for Cushing’s syndrome in an obese population would likely lead to unnecessary testing, false-positive results and anxiety,” Dr. Smita K. Baid of the National Institutes of Health, Bethesda, Maryland and colleagues report in the October issue of the Journal of Clinical Endocrinology and Metabolism.

Using tests and criteria recommended by recent Endocrine Society guidelines for screening for Cushing’s syndrome, the research team “found no subject with the disorder among 369 people who were overweight or obese with a mean of five to six signs or symptoms” of the disorder, according to their report.

All subjects completed two or three tests: a 24-hour urine cortisol, and/or late-night salivary cortisol, and/or 1 mg dexamethasone suppression test (DST). An abnormal result on any of these tests triggered a repeat test and/or a dexamethasone-CRH test. Subjects with abnormal DST results and a low dexamethasone level were asked to repeat the test with 2 mg dexamethasone.

The guidelines suggest that Cushing’s syndrome should not be diagnosed unless two tests are abnormal. When the investigators applied this rule, the combined specificities of double combinations of urine free cortisol, DST, and/or salivary cortisol for excluding Cushing’s syndrome ranged from 84% to 90%. The specificity of urine free cortisol, DST and salivary cortisol together was 78%.

While roughly one fourth of the study subjects had at least one abnormal result, mean composite scores among subjects with and without test abnormalities were not significantly different, the investigators report.

This, they say, “highlights the difficulty in determining whom to screen and supports the fact that these screening tests were falsely positive.”

“We caution against a literal interpretation of the recent guidelines,” the authors write. Instead, they suggest that patients be monitored for worsening symptoms over time and then screened, if appropriate.

“Clinical judgment, taking into account the number and progression of symptoms, remains essential for the diagnosis of Cushing’s syndrome,” the researchers conclude.

Report curtosey of NEW YORK (Reuters Health)

I have mixed feelings about this study.  On the one hand, I think a study like this helps to perpetuate an uphill battle many patients face in trying to get a diagnosis of Cushing’s syndrome because doctors think it’s a rare occurrence. And for doctors who’ve had little or no direct experience in diagnosing or treating a patient with Cushing’s, this study (in my opinion) may prevent exploratory testing in patients who truly need it.

On the other hand, as a society we are faced with 2 epidemics - the onset of obesity and the availability of wide spread medical information courtesy of yours truly the Internet. I think obesity & Cushing’s are mutually exclusive and are too often thought of as one in the same - because you are obese doesn’t mean you have Cushing’s and because you have Cushing’s doesn’t necessarily mean you are obese. Yes, being overweight or in some cases obese is a symptom of Cushing’s - but that’s just one symptom. I think there are other far more telling symptoms of Cushing’s besides one’s weight.

The Internet is an amazing tool (it’s hard to think about life before it) and has given us the power to do so many things, such as not taking a back seat to our health care - but rather researching & learning information as it pertains to our well-being. Having access to so much information can at times be a slippery slope because there is a small percentage of people that may have similar symptoms to that of something more serious and they use the information they find online to diagnose themselves or others around them. And all without consulting their doctor.

In my opinion, in a perfect world we’d use the Internet to empower ourselves with information pertaining to our health & body and then present our findings to our doctor to be proactive in getting to the root of what’s going wrong.

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A couple of weeks ago I talked about feeling a little off. I made an appointment with my endo, she ran some tests and discovered that my thyroid was acting up pretty badly - previously my TSH levels were 1.9 and the new test results showed it had jumped up to 3.9. Yikes!

She explained that because my thyroid was struggling so much, it was causing my pituitary to work overtime which in turn put stress on my adrenal gland. So that would explain why I’ve been feeling so crummy and having surges & with higher than normal irritability.

She recommended I go back on the Synthroid asap. OK - obviously my body needs it. But somewhere in the back of my head, I had this little voice sigh with disappointment because I really, really want to be off prescription meds. But then the rational voice kicks in and says, well duh if your body needs it, then you need to take it.

I’ve been back on Synthroid for about a week now and I do feel some improvement, but still not quite 100%. From what I understand, it can take a little time for my body to readjust - so I’m just waiting patiently.

On a side note - the past few weeks have been rather stressful and I can definitely feel it in my body - a little more achy, tight back with muscle spasms & restless sleep. And the thing is I know it’s the stress, so I’m trying to be aware and taking steps to proactively relieve my body of these toxins. Like anything else, you have to take action to make action. In my next post I’m going to share some of the techniques I’ve been using and talk about what’s working & what’s not working - so stay tuned!

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I’d like to thank everyone who has taken a few moments out of their busy schedules to vote for my blog in the HealthBloggers People’s Choice Awards - your comments are touching. It’s because I have the support from all of you that I’m able to have the strength to preserve in my battle with Cushing’s. So thank you.

The competition runs until Dec. 15th - so if you haven’t voted yet, there’s still time!

Kristin Wall http://www.mybattlewithcushings.com

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When: Saturday Nov. 2nd @ 2pm

There are many of us located in the Seattle metro area and it’s about time we get together for a meet & greet. Nothing formal - in fact, I’ll be hosting the get together at my house. Drinks & light refreshments will be provided.

(If you are not currently a member of The Cushing’s Partner Program and would like to learn more about our group or are interested in joining us for our Seattle meet & greet, please register here.)

I have an indoor kitty and stairs - so if this poses an issue for anyone, please let me know and I can arrange for a different location.

I look forward to meeting all of you Seattlelite Cushies! Please RSVP here.

Best,
Kristin

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I’ve decided to extend The Cushing’s Partner Program support group to Facebook! I know many of you are already on Facebook and thought this would be a great way for all of us to connect - plus there’s a large network of Cushies who have yet to find the Partner Program.

If you haven’t already, I would encourage all of you to join us on Facebook - the more members we have, the more people we can help support (including ourselves) in this recovery journey.

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I’ve been off prescription medications and relying solely on natural supplements prescribed by my doctor for a good 5-6 weeks now. Initially I felt great and really didn’t notice a difference, good or bad. However, shortly thereafter I began to feel more tired and found myself starting to drag through my days. I thought to myself OK this is probably normal, my body’s just trying to adjust to the recent changes.

About 2 1/2 - 3 weeks ago I began experiencing 3 new (and all too familiar) changes in my body. First, my sleep was becoming restless and interrupted. Again, I thought my body’s just trying adjust or maybe I’m feeling stressed. Then the surges slowly started coming back. Fellow Cushie’s you know what I’m talking about. It feels like little bolts of electricity are pulsating through your body, from head to toe. And it’s just a flash, usually gone as fast as it came on. And lastly, my emotions were a roller coaster, going from one extreme to the other. All this time I’d been trying to convince myself that nothing’s wrong, my body’s just trying to adjust. But there was just no denying the changes I’d been experiencing.

For those of you who had a tumor removed from your pituitary gland, your first thought would probably be oh shit, is the Cushing’s back? It can very difficult to remove all of the tumor in the pituitary area during surgery and the reoccurance rate for patients with a pituitary tumor is known to be high.

I consider myself incredibly lucky that my tumor was on my adrenal gland and once my adrenal gland was removed (with the tumor), I was cured of Cushing’s. I know logically that the chances of Cushing’s reoccurring are slim to none, but given the recent changes in my body I couldn’t help but wonder what if?

I had an appointment with my doctor on Tuesday to discuss the symptoms I’d been having. She took some blood and ordered a chemistry work up. My blood pressure & pulse were 100% normal and in the healthy range (big sigh of relief). Her initial thoughts were that my thyroid may be acting up but of course wants to get my my blood work back before making any changes to my current regimen. I should have some sort of an update by Friday.

I’ve been focusing on treating myself to some quality down time - hot bubble baths at the end of the day, lots of stretching and a good 90 minutes of hot yoga tonight.

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Many patients suffering from Cushing’s (including myself) deal with bouts of depression. Chemical & hormonal imbalances literally turned my world and my mind upside down. My endocrinologist told me that once I had surgery to remove the tumor on my adrenal gland, my depression would most likely take a turn for the worse. She didn’t go into much detail but did say it could last up to one year post-surgery.

At the time, I was at an all-time low experiencing full-blown symptoms of Cushing’s syndrome. I couldn’t imagine things getting worse than they already were. Plus my endo was pretty casual about the true severity of what I was about to face in the coming months of my recovery.

Fast forward 2 months - I’ve undergone surgery and physically feel like I’ve been run over by a freight train (and that’s an under statement). And to compound things, I felt like I’m loosing my mind - the depression was at times more than I could take. There were times that I contemplated suicide (I can’t believe I’m actually admitting this, but it’s true). It was at those moments that I had to step outside of myself, take a deep breath and convince myself that this too shall pass.

At the time, I was so caught up in my own head that I felt embarrassed & ashamed to to explain the severity of my depression to my endocrinologist. And part of it was that she didn’t explain just how hard recovery was going to be, so I thought it was just in my head. Although I did work up the courage to tell her that I was having a hard time emotionally and she put me on Prozac.

I’m not endorsing Prozac, but I can say that it truly saved my life. And for anyone who is struggling with depression should know that it’s not just in their head - it’s a chemical & hormonal imbalance that can be treated with medication.

Fast forward 12+ months - I started working with a naturopathic doctor (she’s amazing by the way!) and have taken a holistic approach to my recovery. I’ve weened off my prescription medications (including Prozac) and feel pretty damn good. However, I still have moments when I don’t feel quite right - a little blue, a little sad. And those are usually brought on by stress or too much going on in my life at the moment. Perhaps it’s my body’s way of saying hey, slow down - you can’t to everything or be everything all the time.

In reading this, I hope you walk away with this - depression is real. And it’s OK to talk about it and there are medications/natural supplements available (if you so choose) to help bring you back into balance.

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