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Lauren (Iskah), Undiagnosed Bio

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My name is Lauren. I am currently being tested for Cushing’s Disease. I’ve read that every patient is different, and from what I can see it is completely true.

I am not entirely sure how long ago my story started. I began seeing my family doctor in high school because I was having menstrual issues. At the time my Mom’s biggest concern was that I was having very irregular periods. She had also noticed that I had been growing hair on my face, under my chin and side burns. I was referred to two different specialists – an Endocrinologist and a Gynecologist to try and determine that root cause.

After multiple appointments with both specialists, the Endocrinologist said that I was on the edge of being Hypo(?) Thyrodism (it’s the one that makes you gain weight) and the Gynecologist said that I had PCOS (or PCOD – the name has recently changed, but I prefer to think of it as a Syndrome instead of a disease). I had a large amount of weight gain between grades 10-11, bumps (or cysts) all over my ovaries, facial hair growth and very irregular periods. I disagreed with the diagnosis.

Even at the age of 15 I felt that it was not the right diagnosis. I had friends with PCOS, and every one of them had insanely painful menstruation and small breasts. This may sound silly, but it was honestly the boobs that made me feel like the diagnosis was wrong. I may have small boobs for my family, but I still carry around size D (or DD depending on my weight) breasts. Either way, the voice of a 15 year old does not tend to carry far and I ended up being prescribed Glumetza (Metformin – used in Diabetes patients) and Yaz (Birth Control).

The Glumetza has always made me sick. I can’t eat my favourite foods with out feeling sick, if I can even get it in my mouth. The one thing I’ve always told my family is that it’s like being pregnant 24/7 with no bun in the oven. I’ve been on and off the medication for years now.

About 6 months ago I went in to see my family Nurse (I’ve stopped seeing my family doctor since, as the diagnosis is always “Lose weight”). I had been having chest pains while working out. Now although I say chest pains, it was more like severe pressure in my left shoulder. I would get dizzy and light headed while running with my sister, and on one occasion I threw up (Just bring it up to my sister, and she will start describing the cheesy spagetti coming flying out of my mouth and on to the yard of one our neighbours.. she still will not run that way).

At the point Erin (the amazing family nurse) also mentioned that my blood pressure had been high, not just recently, but for the last year. Furthermore I was hypertensive. I had heard this term before because for the last year my Mother had been going through her own set of genetic heart issues. My Mom had just been diagnosed with Coronary Artery Disease (genetic form of it) and Superventrical Tachycardia (SVT – PSVT specifically). My Mother was also Hypertensive. This was concerning to Erin, as it had already been determined that my Mom’s condition was genetically given to her.

After monitoring my blood pressure for 3 months, with no improvements I was referred to an Internalist who also specialized in Cardiology. He’s great, just for the record. It’s not very often I that I get to speak with a doctor who understands sarcastic humour. Dr. A-R immediately removed me from Mavik (Blood Pressure Pill) as it was actually doing more harm then good. The palpitations that I was having on those pills were beyond intense, and the worst I ever had. They were never long lasting, never lasting more than 20 seconds at absolute most, but I can definitely say that I do not envy my Mom. Dr. A-R diagnosed me with SVT after a 14 day heart monitor. He literally called me the following Monday after I handed the monitor in. He immediately changed my medication from Mavik to a Calcium Channel Blocker. I still have heart episodes but not nearly as many or as bad as when I was on Mavik.

At my 3 month check in last week he said that he was concerned, because he did not believe that the blood pressure and the SVT were actually connected. He believes that I also have Cushing’s Disease. I had some blood work done a few weeks back that showed a very high number for a stress hormone in my blood. Now I am new to this whole thing, and my memory is horrendous, so I honestly do not remember what that hormone is called. I laughed when he said it though, for two reasons. 1. When I was diagnosed with PCOS, I was told that my body didn’t make hormones, hence the thoroughly detested Glumetza. Apparently that’s a different hormone. 2. It’s a stress hormone? Seriously? I am stressed 24/7 between work, home and my constantly changing relationship with the love of my life. I asked him if that would affect the number. As all of you know, it didn’t. At 8am when I had my blood work done, it shouldn’t be that high. He asked that I do a 24 hour Urine test. I waited until this weekend to do it, and I can honestly say that I did not enjoy a single moment of that test.

My Symptoms:

> Weight Gain

> Facial hair

> Irregular Periods

> High Blood Pressure (Hypertension)

> Back Pain (Which I always assumed was from my curved spine – scoliosis)

> I have a little bump on my shoulders, but unless you’re looking for it, you won’t see it.

> High levels of stress hormone.. and waiting on results for Cortisol.

> I recently have been struggling with depression

> Anxiety & Irritability are a constant.

> Acne

I am currently waiting on my urine results.. and I have no idea what to expect. I do not even know how long it will take to get results.

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Michelle B (Mshelle), Cyclic Cushing’s Bio

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Hello all, I’m Michelle mother of 3 beautiful children, I work part-time, 33yrs young, non-smoker, non-drinker, overall health is good for the most part…..Where do I even begin.

I just recently received the diagnosis of cyclic Cushing’s. I’m not really sure how long I have actually had Cushing’s because I have had a diagnosis of PCOS since I was 17 yrs. old ( I’m now the ripe young age of 33). However looking back through labs with my endocrinologist who I see every 6 months, my ACTH levels have been elevated for a bit over 1 yr. It was not until recently January of 2015- things were going terribly wrong.

Starting in January I started to feel genuinely unwell, on a regular basis. I cant really explain all my symptoms there were so many different sensations and feelings that were seemingly different daily. However the red flag was I was having blood pressure spikes from really high, to very low back to back. I never had any blood pressure issues so this was a concern that led me to see a cardiologist. Upon tons of testing the cardio MD felt that something was telling my otherwise very healthy heart to do this and I should see a endocrinologist. (thank goodness for him) I contacted my endo and let him know…. the testing began.

I did every test: the midnightcortisol saliva test, dex suppression, 24 hr urine test, CRH stimulation testing. And I did them more than once. Each time it was a different response either, inconclusive, normal high, or high. I was then referred to the head of the Cleveland clinics pituitary department Dr. Kennedy. He said he is having a hard time believing when he looks at me that its Cushing’s. However all my labs say it is. I will say I do fit the mold of PCOS to a tee- which symptoms of that do coincide with Cushing’s but he still said we have to be sure its Cushing’s. To add to the mix I did have a normal MRI as well.

Dr. Kennedy started me on a 2 week midnight cortisol saliva test- Upon completion we noted levels of cortisol all over the place, some Normal, normal on high range, high, and really high. He confirmed with all the other tests this is Cushing’s. Now we are trying to figure out what is next…. and where is this damn little tumor at. he feels that it is most likely in the pituitary from my test results, but we still are not ruling out else where. He is thinking that the next step would be exploratory neurosurgery or the IPSS. I’m not sure what to think of all this, except I want to hope for the best like everyone- and just be cured!!

On a side note during all of this I also had episodes of severe pain in my chest and nausea. I went to see a GI who did an upper endo scope. They found I had eosinpphilic esophagitis. I also have never had any GI problems until now; and they came on suddenly. Im also having pain in my pancreas area- not sure if any of the two are related at all to Cushing’s. But once again I was fine until recently with all these issues at once it seems.

wish me luck on further testing, treatment, and ultimately a CURE!!

interview

Michelle was our guest in an interview on BlogTalk Radio  Wednesday, May 13, 2015

The archived interview is available now through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. There are currently 83 other past interviews for your listening pleasure!

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Shon (Shon), Undiagnosed Bio

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golden-oldie

 

Two months before my 31st birthday, I was diagnosed with diabetes. I was really shocked considering no other family member (maternal or paternal) had this disease.

Well, as the months followed, so did other diseases such as high blood pressure, high cholesterol, etc. Each diagnosis brought more shock because I felt great and could keep up with any 20 year old out there. Within the next two years I had gain 70 pounds and looked like an apple with popsicle sticks for legs. I also seemed to have more symptoms which seemed to be dismissed by the doctors because it was also a symptom of one of my other diseases.

In the past 8 1/2 years, I’ve had 3 doctors, 3 endocrinologists, a hemotologist, a nuerologist, and 2 cardiologists that just keep attaching my symptoms to one of the labels that has already been given to me. Now, at the age of 40, I feel like I have the body of an 80 y/o. I can hardly walk because of the clots in my legs (have 2 stints), can’t stand for long and bending just kills my back because of the crack in my L5 S1 vertebrae, and among other things, can’t seem to do anything because of the extreme fatigue I have. I have no doubt that I have diabetes, high blood pressure, high cholesterol, clotting problems with my arteries, and everything else they want to label me with, but it seems to me that after only 8 1/2 years, my health shouldn’t have gone down hill so fast. I also take 16 pills a day because each doctor wants to give me a medication for each symptom.

For a few years, I’ve been searching the internet for an answer. I would spend hours and seem to hit a brick wall each time. Still, I wasn’t going to give up. No one gets so sick that quickly from any of the diseases I’ve been diagnosed with. Just the other day, I was watching Mystery Diagnosis . I don’t even remember what it was about, but it did prompt me to start my internet search again. I did something different this time. I didn’t research all of my “diseases”. I simply typed in the search field: “Do any diseases mimic diabetes”. Guess what popped up all over my screen. Yep, Cushing’s Disease. I went to article after article and website after website. I was amazed to find that many of my symptoms were linked to Cushing’s Disease. I couldn’t believe what I was reading. My “diseases” could actually be a symptom of a bigger disease which would explain a lot to me. Now I have another endo which I’ve made an appointment with (a month away, yuk) and I’m going to ask to be tested specifically for Cushing’s Disease.

Below I’ll list my symptoms.

Round “Moon” Face, Fat Lump on Back of Neck, Low Potassium, High Cholesterol, High Blood Pressure, High Blood Sugar, Glucose Intolerance, Insulin Resistant, Muscle Weakness, Fatigue, Anxiety, Irritability, Depression, Decreased Fertility, Decreased Libido, Acne-like Rash, Backaches, Excess Facial or Chin Hair, Slow Healing Cuts or Scratches, Large Abdomen, Insomnia, Irregular Periods, Edema, Scalp Hair Loss, Excess Sweating, Memory Problems, Dizziness, Low Growth Hormone.

I also have a chronically high platelet and white blood cell count. The Hematologist couldn’t even figure it out (Yes, cancer has been ruled out with a bone marrow biopsy). I’m not sure if that has anything to do with Cushing’s or not, but unfortunately I have that as well.

Sometimes we tend to forget that many doctors only spend 7-10 minutes a visit speaking with us and forget about us about 7-10 minutes after leaving the room, and they certainly don’t lay awake at night thinking of us. It is much easier for them to treat a symptom that has already been issued a label rather than find a bigger cause for it, so we sometimes have to take matters into our own hands and help ourselves.

I’m thankful to have found this sight. If I find out that I do not have Cushing’s, I will continue my search, but it is nice to know that I will find an answer someday.

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Diana B (Diana Brown), Undiagnosed Bio

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Hi, My name is Diana. I have been sick for over two years now.

I have had kidney stones for the last 2 1/2 years, constantly passing them and have had three surgeries related to that.I still have seven stones left in both kidneys total. I didn’t feel well after the second surgery, and never recovered from the third which was last August. I have been to 3 urologists, thinking it was a urological problem. They all told me it was not connected to my stone problem.

I have been to two nephrologists and two endocrinologists and a cardiologist along with my Primary Care. The second nephrologist told me he knew what my problem was, Cushing’s Syndrome. That was when I went to my second endocrinologist because my own endo wasn’t on the same page, however she did no further testing and at first told me she thought I was borderline cushing’s followed by a phone call telling me she didn’t think I had it.

I have an adrenal adenoma in my left adrenal gland.I am going to see Dr. Theodore Friedman next month.

Here are my symptoms:

Easily out of breath (don’t know what you call the meter the doctors use to measure your oxygen but my oxygen is low on that meter)

Recently diagnosed with pre diabetes with random high glucose readings but did not test positive for Diabetes with a Glucose Tolerance Test

Tachycardia (never had this before getting ill) that wakes me up in the middle of the night, this started after my third surgery

Extreme fatigue/ as tired when I get up as when I go to bed.

Muscle weakness with any exertion, especially going up stairs and most days just walking across the room

Pallor

low grade fever on and off

blood pressure that fluctuates between 97/67 to 136/84 was always low and has increased frequently

Rising cholesterol over the last couple of years with no change in diet

Right flank pain

Low back pain

Burning pain in upper buttocks and upper back thighs

Stomach and groin pain

Extreme hip pain

Shaky and fine tremor in hands and sometimes my head also shakes

Mildly elevated cortisol (24hr urine cortisol test)

Have been diagnosed with osteopenia in the past

Hashimoto’s

I break out with clammy/flushing skin sometimes during the day but mostly at night.

Cannot tolerate carbohydrates (not for many years) /have many food intolerances

Easy bruising

So, that’s pretty much it. Thank you for letting me join!

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Melissa F, Pituitary Bio

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golden-oldie

Melissa F was interviewed on BlogTalk Radio November 3, 2010. She has had pituitary surgery. Archives are available on BlogTalk Radio and on iTunes podcasts.

From the Clutches of Cushing’s

A journey through Hell… with a happy ending
by Melissa Fine

The most insidious aspect of Cushing’s Disease is, while it is attacking you physically, it is destroying your self-esteem, your peace of mind, your very spirit. That more doctors, psychologists, psychiatrists, drug, alcohol and weight-loss counselors (and the list goes on) don’t know how to recognize something that, in retrospect, seems so blatantly obvious is appalling—and not only tragic, it is, in my opinion, criminal. I often wonder how many Cushing’s victims we lose to suicide because they were not able to get a diagnosis before they lost the will to live… simply because no one thought to look for the definitive answer in their blood, urine or saliva. I am certain that Cushing’s isn’t nearly as rare as the doctors believe it is. What is rare is their ability to recognize it.

This is my story…

First, you need to know that I was always a pretty happy girl (though PMS- related mood swings have always plagued me). I come from a very close family, always had a lot of support, had a group of true friends I could count on, and was always very driven to accomplish my goals. I moved to Las Vegas from Southern California in 1994, right after graduating from UCLA, to move in with the guy who would become my 1st husband (Rat Bastard!). My goal in life was to be a writer, and within a month, I landed a job with a magazine publishing company and was getting paid to do what I love. You should also know I was always way too skinny. No matter what I ate (and I was a picky eater, but what I did like, I ate as much as I wanted of it), I was lucky to keep my weight above 100 pounds. I was happy if I could maintain 105 pounds, so I didn’t look so gaunt…

In 1995, I started noticing something wasn’t right with me. I had every reason to be thrilled with my life, but I was constantly blue. Down. Not tragically depressed—that would come later—but I just never seemed to feel happy. I also found myself complaining of body aches and fatigue all the time. And I kept noticing big, unexplained bruises on my arms, buttocks, and thighs.

In July 1995, I was covering the opening of a new casino/spa in Mesquite, NV. I came out of some exotic acupressure chakra-cleansing massage with one thought: I WANT BEEF! Now, the mere smell of steak would always nauseate me, but I was starving and steak was the only thing on my mind. I ate a 16 oz. New York Strip plus a ½-pound of crab for dinner. Woke up the next morning STARVING and ordered another steak to go with my eggs, hash browns, toast and pancakes, and devoured it all.

That’s when I knew something was really wrong.

Over the next five or so years, I went to many doctors with seemingly vague, unrelated symptoms. I was always famished, so by this time, I was 145 pounds. The depression was also heavier, but at the same time, I felt a constant sense of anticipatory anxiety, like something was about to happen. In less than 10 minutes, a psychiatrist labeled me with “bi-polar 2” and I was thrown on mega- doses of serious anti-depressants and anti-psychotics. I caught every cold, was always bone-tired, constantly in pain, and was finding it more and more difficult to focus on anything. I went on and off various anti-depressants, none of which seemed to work for any length of time. The consensus among the many medical minds was that I needed to diet and exercise.

2000 brought a lot of change—and not the good kind. I found yet another new “family” doctor. This guy, though, actually tried. He noticed, after running a blood panel and looking at my many bruises, that my red blood cells were “abnormal” looking and that my white blood count was up. Up enough that, just to be safe, he wanted me to see a specialist. He told me not to be worried that “oncology” was on the specialist’s wall… he was just really good with blood.

By late August, I was in the oncologist’s office. After looking at more lab results, he promptly scheduled me for a bone-marrow test—which, in his opinion, was just a formality. He told Rat Bastard and me that I definitely had leukemia. My soon-to-be ex-husband asked him flat out: “Is there any chance that this could be something other than leukemia.” The good doctor said, “No. She has leukemia. We just need to find out which kind.”

Bone marrow tests take six weeks to come back. Six days before (and about two weeks from my 30th birthday) the results that would tell me which kind of leukemia I definitely had came back, Rat Bastard decided he “didn’t feel the same way about me anymore” and walked out.

Imagine my surprise when the good oncologist didn’t find the “Philadelphia” chromosome he was expecting to see. Still, he stuck to his guns and was really, really sure I had leukemia. He then took a job at MD Anderson in Houston, TX, but insisted I see his other good oncologist every six weeks or so to keep looking and monitoring my white blood count and my screwy red blood cells. After many months passed and my condition worsened with no explanation, the second good oncologist told me, “You are a ticking time bomb.”

Not helpful.

So, my wonderful boss (who was also a good friend, and, as it turned out, was the guy I was supposed to marry!), paid to send my mom and me to MD Anderson to speak again with the first good oncologist, who was now heading up a leukemia department of his very own. Time for bone-marrow tap Number Two, because he was positive that pesky Philadelphia chromosome was there somewhere.

It wasn’t.

I was back to square one. Only now body parts were starting to break. I fractured my foot by stepping out of bed the wrong way. I tore my meniscus— an injury I was told is usually found in professional tennis players—by doing a single jumping jack in a futile attempt to exercise. A new specialist ran a bone density test that showed I had osteopenia, the precursor to osteoporosis. Another specialist discovered I had insignificant, benign tumors on my adrenal glands—something, he told me, I had in common with approximately 25% of the population. But those revelations were the least of my concerns. The depression turned into an all-consuming black hole. For the next three years, not one day went by that I didn’t sob uncontrollably. I couldn’t do my work, because I couldn’t concentrate long enough to edit a simple story. I couldn’t read a book or even sit through a half-hour sit-com. I no longer recognized myself in the mirror. Even worse, old friends and even my own cousin—people I hadn’t seen in a few years—didn’t recognize me either. They literally walked by me as though I were a stranger. My physical appearance was that dramatically different. I would wake up at 5 a.m., ravenous, and I would FORCE myself to wait until 6 a.m. before I would allow myself about a third of a box of Cheerios with non-fat milk. It was the only time of the entire day that I would actually feel “full.” It only lasted for about two hours, tops… but for that brief window, I found relief from constant hunger pains.

Alone, I no longer knew my own mind. I hid away in my craft room and started endless scrapbooking projects that I never finished. The pretty paper and nifty hole-punches somehow made me smile a little. Like many, I would imagine, I started to self-medicate. Prescribed painkillers.

Thankfully, mercifully, my family bonds were stronger than ever. My parents even moved to Las Vegas to be near me. And that guy, my boss, Glenn… though he met me in my 20s, when I weighed 100 pounds, married me in my 30s, knowing I was truly sick, not knowing what illness I had, and at my heaviest. I was 188 pounds on my wedding day, and he made me feel like a beautiful princess.

At some point around 2003, I had yet another new family doctor. Overall, his diagnostic skills were, at best, questionable. He knew just enough to send me to other specialists. But he was generous with his prescription pad, so I continued to see him. I do, however, owe this particular doctor a huge debt of gratitude. He was the first to mention the word “endocrinologist.” I didn’t know there was such a thing.

Many lab tests later, the endocrinologist told me I had too much of something called “cortisol.” She became annoyed when I asked her what that meant. She faxed her notes back to my family doctor. I noticed she had scrawled the word “Cushing’s” with a question mark after it. I told my doc I didn’t know what

Cushing’s was. His exact words were: “Well, I do know what it is, and you don’t have it.”

The endo disagreed, I guess. She had me scheduled to have my adrenal glands removed. Somehow, 10 days before my surgery, my many questions and stubborn attempts to understand why I was going under the knife really pissed her off. I received a certified letter informing me that, due to my “abusive and indignant attitude,” I was “fired.”

Meanwhile, my mom started Googling. She read the symptoms of Cushing’s Disease as though it were a page from my diary. It was a perfect fit. Except that, according to what she had learned, the lab results weren’t making sense. They were pointing to my pituitary gland, not my adrenals. I cancelled the date with the surgeon and headed back to the family doc’s office. He was quite pleased with himself, claiming he knew it was Cushing’s all along. (He still takes great pride in that epiphany. Why let the facts stand in the way of a good story, right?)

Family doc told me it was great news that my pituitary gland was the culprit: All I would need is a highly focused beam of radiation and some salt pills, and I’d be as good as new. He filled my prescription and sent me to another endocrinologist.

This guy was clever. He actually sent me for an MRI. Unfortunately, the MRI showed nothing. He was, however, in agreement with the previous, previous, previous doctor who told me the adrenal tumors were nothing to worry about. I trusted him, because he dropped the name of a renowned neurosurgeon at USC in Pasadena: Dr. Martin Weiss. I did some research. Dr. Weiss was the real deal—a graduate of Dartmouth and Cornell and a professor of neurological surgery. Finally… an honest-to-goodness expert.

Husband and I packed our bags and were off to Pasadena for a venous sampling. Who knew there was such a test? I found myself in the bizarre position of praying with all my might that I had a brain tumor.

Waiting, waiting, waiting…

Dr. Weiss confirmed that the MRIs did not show the tumor, but he did point to a microscopic something-or-other at the base of my pituitary gland that was tilted ever-so-slightly. He explained that he had, at best, a 50–50 chance of finding the tumor and removing it. He also told me that salt pills weren’t going to do the trick.

In December 2004, Dr. Weiss successfully removed the tumor from my pituitary gland.

This is the part of the story where I’d like to say I dramatically awoke with remarkable bravery and perfect hair to a room filled with calla lilies. Instead, my eyes opened to four or five post-op nurses, I was hooked via a tangle of cords to various machines, my mouth was so dry my tongue was stuck to my palate, and I was frantic to find a toilet. Bedpans just don’t work for me and my bladder was going to explode. After much arguing and cursing, the nurses decided unhooking me was safer than allowing my blood pressure to go any higher. They rolled over a porta-potty, I went forever, and no sooner did they re-hook me than I had to go again.

Learned a new term: diabetes insipidus.

The morning after being released from the hospital (prescription for diabetes insipidus filled and at arm’s length), I remember that, for the first time in nearly a decade, I couldn’t finish my breakfast. I was full.

I’d love to end it with that perfect tagline, but…

Back in Vegas, the brilliant endocrinologist put me on the whopping dose of 20 mgs of hydrocortisone a day. Anxious to “jump start” my adrenals, he quickly lowered the dose to 10 mgs.

After more than a year of seeing a cardiologist for my racing heart; a (mis) diagnosis of panic attacks because it felt like I had an SUV parked on my chest; repeated bouts of nausea and dizzy spells; low blood pressure; increased joint and muscle pain; more depression; and a complete neurological work-up for symptoms too similar to MS for comfort; my incredibly insightful endocrinologist told me to stop coming to his office, go home, and praise God because I was “cured.” In what can only be called a surreal segue, he then added that I should also praise God for my inability to get pregnant, because children are so selfish and self-centered that they only degrade your quality of life. Not surprisingly, he retired from medicine shortly thereafter.

It was at this point that I found the Cushing’s Help and Support boards and verified that I was not, in fact, insane.

One doctor’s name was repeatedly touted: Dr. William Ludlam. He sounded like the savior of all endocrine-challenged souls. I was astounded when he, personally, actually took my call. After listening patiently to my story, he informed me that I was not yet his patient, and therefore, he could not and would not offer me any medical advice or instruction over the telephone. He then told me a story of a hypothetical situation in which certain familiar-sounding symptoms would, to a trained hypothetical specialist, be immediately recognized as the brink of full-blown adrenal failure. I took the hypothetical hint, did some quick online research—and (following only my own hunch, rather than immediately seeing a local doctor as I should have done) took a significantly higher dose of Cortef. Within an hour, I felt human—a feeling I hadn’t known in more than 10 years.

Dr. Ludlam made room in his schedule and, the following week, off we went, at last down the road to recovery.

I celebrated my 40th birthday last month. As 2011 rapidly approaches, I can finally say that my adrenal glands are now functioning on their own. I have not had the need for Cortef in more than a year. I have battled the addiction to pain killers and am emerging as the victor. My size 4 jeans once again fit, and while I still fight depression, it is no longer my primary state of mind. Slowly, I’m regaining energy and enthusiasm. My thoughts are clear, my will is strong, my creativity is restored.

I live.

—–#—–

If you or a loved one is suffering with Cushing’s or Addison’s or you believe you might be, and you need to talk, please feel free to contact me with any questions or simply for an understanding ear. I can be reached at mfine@casinocenter.com (please put “Cushing’s” or “Addison’s” in the subject line) or follow me on Twitter @SinCityTweeter. My thanks and ever-lasting gratitude to MaryO, www.cushings-help.com , and all the fellow Cushies who helped me along the way.

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Lee (lee1958), Undiagnosed bio

2 Comments

Hello.  I just joined so hopefully I will learn more about Cushing’s and find support and encouragement.  I’m not sure if I have Cushing’s yet.

I’ve suffered for years with gaining weight and in the past few years, it seems that no matter what I did, the weight was glued on.  And, it got more difficult to stay active.  Even walking like I used to enjoy has become very hard.  This past year, I gained a lot of weight in a short amount of time.  I’ve been considering weight loss surgery, in fact.

My other symptoms:  high blood pressure, high cholesterol, fatigue, muscle weakness, joint stiffness, my bones hurt, sleep apnea, edema that started in my feet and ankles, but seems to be throughout my body now…and yes, my face has changed drastically.

I don’t go out like I used to.  I work, come home, go to bed.  When invited out, I make excuses so I don’t have to go out.  Recently, I had a doctor visit with my cardiologist and he said he thought I might have Cushings.  He referred me to an endocrinologist who I have not seen yet.  My appointment is in 2 weeks.

In the meantime, he ordered some bloodwork and a 24 hour urine.  So far all the bloodwork is normal.  Even the ACTH was normal.  I have to do my 24 hour urine tomorrow and also the AM/PM Cortisol.  Part of me is dreading the results, and part of me wants to know why I can’t lose weight.

Everyone makes you feel like it’s all your fault.  I can’t even get my Gastric Bypass unless I lose 30 pounds first and I have tried and failed. I don’t even know if I can have the surgery if I find out that I have Cushings.

Can you have Cushings with a normal ACTH?  I’m so confused.  Any help would be appreciated.

~~~~~~~

She also submitted a second version:

First, I thought I posted, but maybe it didn’t go through.  Starting again. I’m 55,

I haven’t been diagnosed yet, but I was at my Cardiologist’s last week and he seemed perplexed with all my undiagnosed symptoms.  I have a plethora of problems beginning with weight.

I’ve been battling my weight for the past 10 years, but about 4 years ago it seems that no matter how active I was, I wouldn’t lose, in fact, I gained.  It didn’t seem reasonable to be working out, eating right and still gaining.  This past year alone, I gained 45 pounds in a few short months.  It’s made me feel so sick!

I’ve been forging ahead to have weight loss surgery, but they want me to try to lose about 30 pounds first and I just can’t.  It’s a losing battle.  And I don’t even know IF I can have the gastric bypass if I am diagnosed with Cushings.

Other symptoms:  High BP, extreme fatigue, muscle weakness, joint pain, my bones hurt, even lifting a coffee mug feels like my wrist is giong to break!  I have edema that started in my feet/ankles but my whole body feels waterlogged.  My liver is enlarged and throwing off high AST/ASL results.  I have sleep apnea and it was untreated for a few years, so I developed Pulmonary Hypertension.

My face has changed this past year, I don’t even recognize myself.  So, my Cardiologist says he thinks I may have Cushing’s.  He has set up a referrel to an endocrinologist, which is in 2 weeks.  But, he did order a slew of tests.

So far, everything is normal…including my ACTH.  Tomorrow, I am doing my 24 hour urine and my AM/PM Cortisol.  Can you have a normal ACTH and still have Cushing’s? I’m anxious to find out but almost hoping that I have Cushing’s, as it will be an answer to what is happening to me.

Anyway, glad to have found this support group!

Thank you in advance for any support/encouragement.

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Patty L (Answer hungry), Undiagnosed Bio

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I’m a 33 year old female.  I have 3 young boys ages 8, 5 & 2.

About 1 year ago I started suffering from chronic fatigue to the point of crying halfway thru my work day not knowing how I was going to make it thru the rest of the day.  I went to my primary physician who stated I might need to have my thryroid rechecked.  I was previously diagnosed with hypothryroid but on a real low dose of Levothryroxine.  He ran some blood work and the test came back normal but with deficiencies in my B-12 & Viamin D.  He suggested I try a multivitamin.  I went out and splurged on the best vitamins I could find but they were of no help.

I returned after experiencing palpitations and dizziness.  I was then diagnosed with Vertigo and given meds that only made me more sleepy so I stoped taking them.  I noticed I was gaining weight even though at this time I was running 3 miles 4X/wk and loging in my meals.

My PCP thought I was suffering from depression because I cried at one of my appointments out of frustration because I just waned to make it thru a day without feeling tiered.  He suggested I take a sleep study test to check for insomnia.  The test came back cleared saying other than fallling asleep faster than usual patients nothing else was wrong.

I was referred to a cardiologist becasue I was also feeling extremely cold  and had a difficult time performing the same tasks I was able to do wihtout any problems months earlier.  I kept insisting I had a lot of the syptoms I had previous to start on meds for my hypothyroidism but because the blood work came back normal they said they could not change my meds.

I read somewhere about secondoray hypothyroidsm and requested a referal to an endocronologists.  My PCP felt there was no reason as everything came back normal but I pleaded until he gave in and authorized my referral.

I went to see my endocronologist for the first time and for some reason after telling her what I was experiencing she told me my issues could range from anemia to Multiple Sclerois but she also wanted to check for something extremely rare…..did not give me a name.  She requested blood work and sent me home with 3 cottong swabs she wanted me to saturate between 11 pm – 12 am, stick them in the fridge and return to their lab as soon as I was done.  I did this and she called me stating the tests came back abnormal and she wanted me to do another tests.  She was very vague about providing me with information other than assuring me that what she was testing me for was extremely rare and it was probably false results.  She told me not too panic and just go about life as usual.

I came home with a 24 hour urine collection container and another round of saliva tests.  I got a call from her nurse stating everything was normal.  I insisted I wanted a f/u visit with the Dr.   At the time of my visit she stated she was happy I had insisted on another appointment because the saliva test came back abnormal, but only on one of the swabs.

This time I came prepared with a list of symptoms and my own depression screening test (I’m a social worker and knew my some of my symptoms were similar to those of people suffering from depression), she took copies but again told me not to worry.  Well the more she told me not to worry the more worried I became and started researching Cushing’s the extrme rare disorder she had been telling me not to worry about.

My husband came across a website called Cushing’s with a Moxie, when I started reading the blog I started to cry I felt like finally someone understood me.  I still don’t have an answer by my Endocronologist but in my head I think I’ve figured it out and as silly as it sounds I’m wishing this is it, finally an answer to my symptoms.

~~~

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ORKitty, Pituitary Bio

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Another Golden Oldie, this bio was originally posted 01/22/2008

Hi, I’m ORKitty. I live in Portland, OR, with my wonderful husband and kitty. I just turned 50 in 2005.

I began this journey quite possibly 17 years ago when I had some isolated panic attacks and then suddenly had panic 24 hours a day. I also kept crying and didn’t know why. I was eventually put on Xanax and then found a psychiatrist who put me on the anti-depressant imipramine and weaned me off the Xanax. It worked well for both the panic and depression for about 10 years. I gained some weight which I attributed to the anti-depressant. During this time I was still able to work and ran my own home-based business for 3 years. About seven years ago my anxiety worsened and my psychiatrist added Klonopin to deal with it. About this time I began gaining even more weight.

Due to a terrible (and terrifying) experience with a doctor, I developed a real phobia about seeing doctors. I managed to overcome this in early 2003 and have a large lump on my neck examined. An ultrasound showed normal tissue, but while I was there the doctor took my blood pressure at 160/100 and then decided to do an EKG. She found an abnormality and sent me to a cardiologist who diagnosed me with severe cardiomyopathy (next step dead). I was put on medication and had regular echocardiograms every few months and each one showed more improvement.

In fall of 2003 I was diagnosed with hypothyroidism and began taking Levoxyl, increasing by very small doses because it seemed to increase my anxiety every time I upped the dose. At the same time I was taken off the imipramine because there was some concern that it may have contributed to my heart problems. As my thyroid meds increased I began to lose weight and began having serious digestive problems including constant diarrhea. I had burning sensations in both arms, edema in both legs and my periods stopped. After some misdiagnoses and some doctor abuse I was finally found to have gallstones and had my gallbladder removed in April of 2004. I had hoped this would clear up the digestive issues, but that wasn’t the case.

After the surgery I noticed that my depression was getting much worse. By July I found that I couldn’t stand to listen to music or watch TV without getting anxious and upset. I was also feeling like I was in a fog and had racing, looping thoughts. I had trouble with reasoning and memory. My psychiatrist began prescribing a variety of medications, none of which seemed to help any of my symptoms. Things were so bad that I became suicidal for the first time in my life.

I finally persuaded my doctor to do a CAT scan to see what was wrong with my digestive system. Nothing showed up there but they found a uterine/ovarian mass and an adrenal adenoma. My doctor didn’t tell me about the adenoma until a later visit when she mentioned it in passing, saying it was nothing to worry about.

Oregon Health Sciences University.

Oregon Health Sciences University. (Photo credit: Wikipedia)

That was when I saw my first endocrinologist hoping to get help with my thyroid and an explanation of what was going on with my adrenal gland. He did a 24-hr. urine collection and my cortisol was high (200). He did an 8mg Dex test and I didn’t suppress completely so he sent me to Dr. Cook at OHSU who did a CRH/Dex test. The results were somewhat ambiguous, but he decided that the most likely source was the adrenal adenoma and recommended having the gland removed. I had that surgery in December of 2004. The day of the surgery I developed phlebitis in my right arm starting at the site of the IV. My arm became red and swollen from wrist to shoulder and all the superficial veins in that arm clotted up and disappeared. Ten months later I still can’t have blood drawn from that arm.

In the months after my surgery my heart went back to normal and my cholesterol and blood pressure improved, my periods came back and the burning sensations lessened. My legs were still swollen and suddenly became very red and hot. Doctors suggested it might be cellulitis or vasculitis. After 10 days of antibiotics the redness went away and a few months later the edema did, too. An ultrasound of my legs showed a thickened vein in my right leg that suggested there might have previously been a blood clot there. The mental fog slowly improved but I’m still not back to where I was. The anxiety and depression did not improve and have even gotten worse.

I planned to have the uterine mass removed after the adrenal surgery. This would be a total hysterectomy and my surgeon feels that my blood clotting problems need to be treated before the surgery. He is 99% certain that it is not cancerous since it hasn’t changed in over a year so I have the option of having the surgery when and if I choose. Of course there is a very slight chance that this mass could be the ACTH source.

Dr. Cook wants to do the IPSS before the MRI of my pituitary but this clotting problem needs to be dealt with before we stick 3-foot catheters in my veins. Plus I am running out of arm veins for the IVs.

Right now I’m waiting for my doctors to decide how to deal with this clotting problem before I can get the IPSS done.

I had a follow-up visit with Dr. Cook in September of 2005 and he ran all the tests again including the CRH/Dex. Since we thought the adrenalectomy had cured the problem, we were both surprised when my ACTH did not suppress. Dr. Cook wants to do an IPSS to see if the source is ectopic or pituitary. As I mentioned above, there is a slight chance that the growth on my uterus and right ovary could be the source of the ACTH. Neither my Gyn surgeon nor Dr. Cook feel that this is very likely, but it does make having the IPSS even more important than it would normally be.

Lisa (Lisa), Pituitary Bio

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I was diagnosed with Cushings in Feb 2011 at the age of 30, after 6 months of inconclusive testing to find out what was going on with me.  Bone marrow biopsy, CT scans, MRI’s, urinalysis, bloodwork, you name it, it was done.  The first symptom I noticed was my left foot swelling (edema) after a workout injury.  The swelling remained long after it should have, and I thought I damaged my lymphatic system.  A trip to the endocrinologist and a CT scan proved that untrue, but he did notice I had an enlarged spleen and a high red blood cell count.  He didn’t seem to think that was a concern, but around that time I also began to experience a constant pain in my right flank.  So I went to a gastroentrologist.  Then a hemotologist, then a cardiologist, etc.  My final diagnosis came after my hemotologist ran a urine sample and noticed a highish level of cortisol.  She sent me back to my endocrinologist.  Before I went, I started a heavy Google search for what high levels of cortisol could mean, and came across Cushing’s.  I knew that was what I had.  I had been diagnosed with a prolactinoma 4 years prior (which I had told every doctor I had seen) and no one made the connection.  I demanded my endo test me.  He didn’t want to, telling me that I hadn’t gained weight and that people who had Cushing’s were really sick.  I demanded, and he gave me a supression pill to take the night before I came in for bloodwork.  He called me with the results a couple of days later, accusing me of not taking the pill.  Of course I took the pill, I said.  He said that the pill hadn’t suppressed my levels as it should have, but he didn’t believe it, and wanted me to then do a 24hr cortisol urinalysis.  I agreed, but also scheduled an appt with a neurosurgeon.  The neurosurgeon had the same hesistation, but also did the 24hr test.  A week later, the tests came back in.  My cortisol levels were 8 times what they should have been.  I definitely had Cushing’s.

I had transsphenoidal surgery a month and a half later.  I spent a week in the hospital that can only be described as hell.  My body crashed hard and every part of me ached.  The next four months proved equally as challenging, my energy being non-existent and my replacement dosage being difficult to keep correct.  But a year and four months later I’m very close to being off the replacement dosage, and feeling back to normal.  Thank goodness for Cedars Sinai pituitary center for their attentiveness and care.

The biggest lesson I learned was to trust yourself.  I did not gain weight when I was sick.  I did begin to develop a moon face and a small tummy, but my weight remained constant.  I was waking up at 3 in the morning every day, my blood pressure spiked, my muscles weakened, I bruised easily, I lost hair on my head, my skin became mottled and thin.  I don’t know if the weight gain would have happened eventually or not, but I truly believe I wouldn’t have stayed alive long enough for that to happen… the change from healthy to sick happened so rapidly in my case that if it kept up I doubt I would have lived much longer that a year or so.  I worry about recurrence every day, and have had numerous visits to the ER since surgery due to adrenal crisis, but at least I know what to do when that happens and can take care immediately.  And as I’m sure most of you would agree, I treasure every healthy day.

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