the journey of a Cushing’s survivor

I was recently asked to join the HealthBloggers Wellsphere Network, which promotes bloggers’ work to Wellsphere’s rapidly growing audience, focuses on bringing high-quality blogs to those seeking health information and support online. The network attracts health bloggers –physicians, health professionals, expert patients, caregivers, reporters, and others – with a commitment to increasing visibility to the writers’ work and providing exclusive access to offers, features and tools for their individual blogs.

The HealthBlogger Network is holding its 2nd annual People’s Health Blogger Awards competition and My Battle With Cushing’s Syndrome has been entered and will be featured in at the Heath2.0 conference. Very exciting!

I would love for each and every one of you to show your support for My Battle With Cushing’s Syndrome by voting HERE or clicking on the badge below.

Thank you for your support!

Kristin Wall http://www.mybattlewithcushings.com

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I’ve been on natural supplements for about 9 weeks now and I can honestly say I feel better than I’ve felt in years. I know that’s a bold statement, but all of you out there who are suffering from or in recovery from Cushing’s know what I’m talking about.

I’ve been taking my daily regimen of prescription medications in conjunction with these supplements, with the goal of finding a healthy balance before I started weening off the prescriptions. Well that day is here! (Note: Please do not start or stop prescribed medications without consulting with your doctor first.) I’ve been on Synthroid to treat hypothyroidism and Prozac to stabilize my moods since 1 month post-surgery from Cushing’s. Two weeks ago I started weening off Synthroid, reducing my dose to every other day for a week. Once that was done, I did the same with Prozac. And you know what? I don’t feel any difference. I guess I can attribute that to one of two things: the natural supplements I’m taking are working their magic, bringing my body back into balance or the prescriptions had lost their effectiveness at this point in my recovery.

Either way - I’m happy to be free of prescriptions. No more calling in refills or multiple trips to the pharmacy every month. Now all I have to do is order my supplements online and with the click of a button, they’ll be in my mailbox within a matter of days.

On a side note, my son Mason celebrated his 6th birthday a couple of days ago on Sept 13th (born on 9/13 and weighed 9lbs 13oz!). It was not only a milestone for him, but for me too!

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Last night I tried my first ever hot yoga class. I’ve done regular yoga in the past (like 3 or 4 years ago) and have heard nothing but good things about hot yoga, so I decided to give it a try. Holy smokes!!! This class blew my mind - it was like a 90 minute orgasm.

The yoga studio was heated to about 105 degrees and the instructor lead the class through a series of 26 poses & stretches - all of which are done 2 times. At any time you had the option of laying down on your mat if the heat started to get too intense.

When the class started, I had butterflies in my stomach because I didn’t know how well I’d be able to do all the poses. Thing is, the heat helps you to become more flexible and limber. And I surprised myself in what I was able to do. About an hour into the class (it was a 90 min class), I started to reach my peak and the heat was starting to take a toll on me. So I took it easy, laid down when I need to and was able to finish the class.

I walked out of there on such a high, like nothing I’ve ever felt before - and completely drenched (like I’d taken a shower with my clothes on). Honestly I don’t know how I managed to drive home. I think I drank about a gallon of water before going to bed. And let me tell you, I slept like a baby.

Today I’m still feeling the after effects, jelly-like and super relaxed. My whole body feels cleansed inside & out and feels like it used to when I did endurance sports. I think I’ve finally arrived at the end of my recovery tunnel.

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I had another visit with my naturopathic doctor this morning to give her feedback on my progress with the supplements I’m taking. Well, it’s been a mixed bag over the last 2-3 weeks.

The first 2-3 weeks I started taking the supplements, I felt G-R-E-A-T; I started shedding some weight and my energy was at an all-time high. Right around week 3, my weight loss started to plateau. Now 5-6 weeks into this new regimen, virtually all the weight I lost is slowly creeping back. Luckily my energy levels have stayed the same.

I could feel a subtle difference in my appetite, my body had a hard time getting to the point of feeling satisfied. So I knew this wasn’t just all in my head or a matter of just forcing myself to eat less. Because I had experienced that brief period of having a normal appetite and my body did feel satisfied with a normal amount of food. I knew my body was starting to become unbalanced again.

I explained my issues with food cravings and the inability to feel satisfied after a meal with my doctor. She thinks it may be one of two things: 1) my serotonin is low or 2) my thyroid is acting up. So she took some blood to check my thyroid, serotonin & DHEA levels.

In the meantime, she’s up’d my dosage of TravaCor (helps to naturally boost serotonin) and AdreCor (supports adrenal function, adrenal neurotransmitters, epinephrine & norepinephrine). Hopefully I’ll start to feel some relief and see a difference within the next couple of days.

This is yet another reminder that nothing is guarenteed and there is no one answer. Rather it’s a dynamic solution that’s constantly evolving.

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It’s been three weeks since I started on natural supplements to help fine tune my recovery from Cushing’s syndrome. I can honestly say that I feel pretty damn good - not 100% just yet, but I’m getting close.

Here’s a list of the improvements I’ve had since taking the supplements.

• increased energy levels
• longer, more evenly sustained energy levels
• a more restful sleep, no waking up during the night, no tossing & turning
• BIG decrease in appetite
• less cravings for foods high in sugar, fat & salt
• ability to think more clearly
• longer sustained attention span, greater attention to details
• increased libido (I have a sex drive again!)
• noticeable decrease in muscle/joint tenderness
• increase in muscle strength
• noticeable weight loss in my face and torso
• no more hot sweats

Although all of these improvements are exciting, I still have a few residual side-effects that are lingering.

• sensitivity to heat
• sensitive skin, easily prone to rashes and irritation
• extremely dry feet, even with mosturizer
• still holding onto the Cushing’s weight, but it’s slowly coming off
• still have a tendency to experience emotional high’s & low’s, although the severity has decreased significantly

Many of you have asked about the supplements I’ve been taking and I’ve been apprehensive about disclosing the names of them until now, mostly because I wanted to see if they really made a difference in my day to day living. Well, the results are in and I would encourage any of you who are struggling to find balance well into your recovery from Cushing’s to talk to your endocrinologist, primary care doctor or naturopathic doctor about using these supplements:

• AdreCor Powder, supports adrenal function and the synthesis of the adrenal neurotransmitters, epinephrine and norepinephrine , with a combination of amino acids, vitamins, and other nutrients. This formula is rich in B-vitamins that are important to the production of the adrenal hormones required to combat stress and fatigue. AdreCor contains an extract of the adaptogen, Rhodiola rosea , a source of biologically-active rosavins. NeuroScience’s Rhodiola is standardized to contain 3% rosavins, which have been found to decrease the affects of stress and fatigue. N-acetyl-tyrosine and L-histidine are included to support the catecholamines and histamine, respectively.

• TravaCor, provides gentle support for the inhibitory neurotransmitter system through a unique combination of amino acids and vitamin and mineral cofactors. The amino acid theanine is included and has been widely studied for its ability to produce a calming effect and prevent over-stimulation. 5-HTP is included to support the production of serotonin. Taurine acts by enhancing the effects of GABA. TravaCor is recommended for those with difficulty falling asleep or staying asleep, highly anxious individuals, and those with hyperactive tendencies.

• Balance-D, an amino acid formula that contains an extract of the nutrient dense bean, Vicia faba, as a source of 3,4-dihydroxyphenylalanie (L-DOPA). NeuroScience’s Vicia faba is standardized to contain 50% L-DOPA, the metabolic precursor to dopamine. N-acetyl-tyrosine is included for additional support to the catecholamine system.

• DHEA, it’s a hormone produced by the adrenal glands and is a precursor to androgens. DHEA, along with other adrenal hormones, affects metabolism, immune response, energy levels, and estrogen and testosterone levels.

As of now, I’m still on prescription medications for hypothyroidism and low moods. Over the next couple of weeks, my doctor and I will work to find an optimal balance for these supplements and I’ll start weening off the prescription meds. I can’t tell you how excited I am about the thought of being drug free.

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Today I’m celebrating my 32nd birthday & going out to dinner with my family and bestest (is that even a word?) friend in the whole world. I think this is going to be a good year…

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Wednesday is my 32nd birthday…oh my. It’s hard to believe that I’ve been on this planet for that long, ’cause I sure don’t feel that old. I think in my heart of hearts, I’ll be perpetually 24.

My parents had a celebratory dinner for me at their house over the weekend - good food, good wine and a super chocolate birthday cake - can a girl ask for any more? We of course had to take some pictures to mark the occasion and even I was shocked to see how different I look.

I can’t tell you how happy it makes me to finally be able to see the physical results of all my hard work over the past 18 months. And the best part is that my outer self is reflective of how I feel on the inside; happy, balanced, relaxed, youthful with (almost) normal energy levels and most of all, hope for the future.

I think I see a triathlon in my future next summer…

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I’ve received a number of questions about the types of things my doctor recently tested me for and want to offer more insight to those who are still feeling unbalanced after Cushing’s. I’m 18 months into my recovery and although I’m pathologically cured from Cushing’s, I still haven’t feel well. Something was off and my recovery had totally stalled out.  My cortisol, growth hormone & thyroid tests all came back normal. I started to have flash backs to before I was diagnosed with Cushing’s and my doctor would say ‘you’re tests came back normal, we can’t find anythig wrong with you.’ No one knows my body than I do and decided that I wouldn’t stop pursuing my recovery until I got the answers I needed.

Based on a recommendation from a friend, a sought out a naturopathic & holistic doctor. I did this for two reasons. 1) naturopathic & holistic medicine takes the approach of treating the patient as a whole; physically and mentally. And is willing to exhaust every option available to get to the root of the problem. 2) at this point in my recovery, I don’t know that prescription medicine is the best medicine for my body. There are many alternatives available that help bring the body back into balance naturally.

My doctor had me complete a mail-in testing kit that consisted of a urine test and a salivatory test to measure my neurotransmitter levels. It was super easy and it came with everything I needed to mail the package back to the lab when I finished the tests.

The test results showed a clear picture of what’s been going on with my neurotransmitters, specifically:

• Dopamine - responsible for feelings of pleasure & satisfaction, as well as muscle control & function.
• DHEA - serves as a precursor to the sex hormones testosterone & estrogen as well as supporting adrenal function.
• PEA - important for focus & concentration.
• Norepinephrine - important for mental focus & emotional stability.
• Epinephrine - also known as adrenaline, important for motivation, energy & mental focus.
• Serotonin - helps to stabilize moods, sleep & appetite.
• Glutamate - necessary for learning & memory.
• Histamine - helps control the sleep-wake cycle as well as energy & motivation.
• GABA - necessary to feel calm & relaxed.

My DHEA, Norepinephrine, Dopamine and Serotonin were considerably low. And that would explain why I still have so much fatigue, trouble with concentrating & staying focused, problems with consistent sleep, hot flashes and inability to loose the rest of my Cushing’s weight.

My doctor prescribed me 3 different supplements to help my neurotransmitters start functioning at normal levels. I’m taking the supplements in conjunction with my current prescription medications and once we find an optimal balance, she’ll start weening me off the prescriptions. (I prefer not to mention the name of the supplements I’m taking because I’m not a medical professional. If you’d like more information on the supplements I’ve been prescribed, please send me an email using the contact form and I will discuss it on a as needed basis.)

I’ve been on this new regimen for almost a week now and I already feel a dramatic improvement. My energy has improved and I’ve lost almost 10 lbs. Working out has become less painful, I’m able to push my body a little harder and the recovery time has decreased significantly.

It’s amazing how such little tweaks can have such an impact on my quality of life. Once again, I’m hopeful that my recovery will lead me back to my old self - sooner rather than later.

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I met with my new doctor to get the results from my urine and salivatory tests. And I must say that I was pleasantly surprised by the plethora of information she presented me.

The test results not only revealed how well my adrenal is functioning, but also included a multitude of other factors that dictate how well my system is performing as a whole.  And just as we suspected, my adrenal is performing at a less than optimal level. But it’s not as black & white as that.

Test results show that my DHEA, Norepinephrine, Serotonin and Dopamine levels are low. And that would result in low levels of energy, low mood, lack of focus, lack of motivation, hot flashes and increase/uncontrolled appetite.

As she was explaining all of this to me, I felt like I wanted to jump out of my chair to give her a hug. Why hasn’t any other doctor up until now tested me for any of this? She explained that this type of testing is still considered new in the medical field - even though it’s been used for nearly 15 years - and unless doctors are willing to stay current on updates & changes in the medical community, they stick with the status qua. Well, that’s just down right depressing. I feel incredibly lucky to have connected with a doctor who thinks outside the box.

Now that we know what the playing field is, she started me on DHEA replacement therapy, along with some natural supplements that will enbale my body to start producing higher to normal levels of Norepinephrine, Serotonin & Dopamine. She said I should start feeling subtle to above average results in less than two weeks.

Now, I’m trying to contain my excitement because I now that nothing is a quick fix, but I’m incredibly hopeful that my recovery will get jump started again. This is not the end of the road, but rather a detour.

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I met with a new doctor last Friday in search for answers and some relief from my never ending recovery from Cushing’s syndrome. I’ll admit, I was a little skeptical when she came into the exam room and asked me to tell her my history with Cushing’s. I had prepared myself for the worst and hoped for the best, so my initial reaction was to ask her if she knew much about Cushing’s. She quickly put my fears to rest and assured me she had extensive experience and knowledge about Cushing’s and endocrine disorders. (mental checklist, CHECK!)

She gave me an overview of how her practice and methods differ from let’s say, traditional medicine. She practices naturpathic and holistic methods of medicine. And went on to explain that a patient needs to be treated as a whole and the goal is to bring the body back into balance naturally. It’s not to say that traditional prescription medicines don’t have a place, but there are often times natural alternatives that achieve the same, if not better results in recovery from certain illnesses and diseases.

She shed light on a new piece of the recovery puzzle that no other doctor has mentioned. When I was sick with Cushing’s syndrome and developed a benign tumor on my right adrenal gland, that was strictly a pathological disease - meaning there was a disruption of normal bodily function due to disease. Once I had surgery to remove the tumor and was cured from Cushing’s syndrome, I no longer suffered from a pathological disease.  Now I’m left with the aftermath  - imbalances - as a result of Cushing’s.  This was the fist time a doctor did not solely rely on numbers from a test. (I’m so tired of hearing ‘You’re tests came back and you’re within the normal range.’ What does normal mean anyway? Because it’s within the normal for the average population doesn’t necessarily mean it’s normal for my body.)

I’m not saying that test results aren’t a valid source of information, but I think patient feedback should be taken into consideration when trying to identify the underlying cause for poor health (and no, it’s not all my head thank you very much!).

So my doctor went on to explain that although I’ve been cured from Cushing’s, there may be issues to address as a result of the exposure to excess amounts of cortisol - such as dysfunctional neurotranmitter(s). ‘Neurotransmitters are the chemicals that allow communication to occur in the brain. Different neurotransmitters allow and/or produce different functions.‘ So if all of my neurotransmitters aren’t functioning at self-sustaining normal levels, that would explain my inability to loose my Cushing’s weight (despite a low-carb diet & exercise), memory lapses and loss of focus to name a couple.

Since this was a meet & greet appointment, my doctor ordered a urine test, along with a 12-hr salivatory test to get a better idea of what the playing field is like (her words, not mine!). Once she gets the results back, we’ll have another appointment to discuss various naturopathic treatments (herbs & supplements) to get my body back in balance.

I was sick with Cushing’s syndrome for more than 4 & 1/2 years and have been in recovery for 16 & 1/2 months now - I AM SO ready to have some balance and to put this thing called Cushing’s behind me.

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