Sometimes natural is the best way to go
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:
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.
If you enjoyed this post, make sure you subscribe to my RSS feed!
July 30, 2009 8 Comments
I’m 32 - how can that be?
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…
If you enjoyed this post, make sure you subscribe to my RSS feed!
July 29, 2009 2 Comments
Glimpses of the old me
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 outter 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…
If you enjoyed this post, make sure you subscribe to my RSS feed!
July 27, 2009 4 Comments
Still feeling unbalanced after Cushing’s?
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.
If you enjoyed this post, make sure you subscribe to my RSS feed!
July 16, 2009 3 Comments
Test results
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.
If you enjoyed this post, make sure you subscribe to my RSS feed!
July 10, 2009 6 Comments
Comprehensive patient care (yes it’s true!)
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.
If you enjoyed this post, make sure you subscribe to my RSS feed!
June 23, 2009 No Comments
Where to turn when traditional Western medicine fails
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 frusterating than a doctor telling me there’s nothing wrong, that all my tets 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 eveidence 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 definetely worth exploring at this point.
So based on a recommendation from this friend, I made an appoinment 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!
If you enjoyed this post, make sure you subscribe to my RSS feed!
June 11, 2009 2 Comments
Metabolic Syndrome
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…
If you enjoyed this post, make sure you subscribe to my RSS feed!
May 14, 2009 No Comments
Part II: Recap on the 2009 Pituitary Patient Symposium on Cushing’s Syndrome
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.
If you enjoyed this post, make sure you subscribe to my RSS feed!
May 13, 2009 No Comments
Recap on the 2009 Pituitary Patient Symposium on Cushing’s Syndrome
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.
If you enjoyed this post, make sure you subscribe to my RSS feed!
May 12, 2009 4 Comments
