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In Memory of Kate Myers ~ June 23, 2014

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Kate (Fairley on the Cushing’s Help message boards)  was only 46 when she died on June 23, 2014.  Her board signature read:

After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!

During her too-short life, she provided help and support to other Cushies.

Her National Geographic video in 2007

Her BlogTalkRadio Interview in 2008: http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Articles to help others:

Kate’s Family Letter
Kate’s Packing Suggestions For Surgery
Kate’s Pituitary Surgery Observations

Kate’s bio from 2008:

Hi y’all! I will try to make this short, but there is a lot to say.

I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.

At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.

Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.

Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?

Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.

At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.

At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.

Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.

At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.

Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.

So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.

By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?

Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.

I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.

In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.

But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)

Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).

Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.

When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.

Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.

Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”

Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?

I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.

I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.

So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.

And, I’ll keep you posted.

Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.

Be well, my new friends,
Kate

p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.

 

Amy (Amybtru), Pituitary/Adrenal Bio

1 Comment

I am a 45-year-old female I have five children three of which are adults and two that are 17 and 16 years old.

Around 2018 I started to develop a very round face plus I had a lot of weight gain in August 2019 I had an MRI of my brain and there was a pituitary microadenoma 6 mm I had a second MRI in August 2020 and I still had the pituitary microadenoma well then December 2020 I had an MRI and the microadenoma was gone sooooooo I said to my Endo maybe we should take a look at my kidneys

well I just found out about those my right one has a 8 1/2 mm nodule on the adrenal gland and then my left kidney has a some type of cyst on the superior pole of the kidney And some kind of lesion I’ve been referred to a urologist to take out possibly my adrenal gland my endocrinologist he did notate that he was going to be considering adrenalectomy as possibly the Best treatment along with the urologist I just got referred to the urologist I have to call them back on Monday to set up an appointment

I am I am nearly 400 pounds I have lost all my hair I’ve lost my fingernails twice due to fungus ravaging my body when I am sick weak such opportunistic little suckers and I don’t eat very much out of the seven of us in this house I eat less than anybody does no matter how little I eat I just keep getting bigger and bigger and bigger and then I got the skinny legs and I’ve got fins skin that cracks open all the time for no apparent reason and then take forever to heal

I had one midnight salivary test will come back 253 I had a second salivary come back 127 but four months later they messaged me and said it was a mistake the 127 was not my results my result was normal little bit shady I asked how and why this could’ve even happened four months later and the doctor says he does not now s

o then my next cortisol test was with the 8 mg dexamethazone suppression and it took it down very low so I’ve been with this endocrinologist since August 2019 and he’s tested my cortisol three times and my urinary cortisol has collected one time there was nothing cortisol related with my urine and also cortisol blood tests that were within normal limits as well so he says I have intermittent Cushing’s disease

Cushing syndrome yeah I don’t feel that he is vigorously done anything to treat me do more testing do more salivary‘s do more anything if I wasn’t so deep in this already I had to wait four months to see him back in April or August 2019 I’m this far in and to back out now and try to find an endocrinologist would be a total pain in the ass my whole body has changed my mind has changed my memory my vision my confidence

I have a very hairy face now and it actually connects all the way around to make it go to you now so that’s wonderful and my stretch marks have gotten deeper and more severe on my abdomen and sometimes even feel like they could crack open him as I’m prone to fungal infections when I am not in good health I have ringworm on my stomach I have ingrown hairs all over my chin that can’t get through the scar tissue from a previous health issue that I can get into later so the hairs get stuck Behind the scar tissue and just keep getting more ingrown and More ingrown.

I am basically paralyzed and I’ve been telling him this for over a year I feel like I am going to be paralyzed I feel like my legs are not working my muscles are not working I have such weakness and such pain in my body it is unreal it’s inhumane in my opinion and awls I can take for it is Tylenol

I cannot believe in the year 2021 once they killed a bunch of people off with opioids they never thought hey maybe we should develop something else for pain real pain that works idiots!

There is a lot more to my story that I hope to get to share with people that have gone through this living hell and I am in desperate need of support in guidance I have no one to talk to you about this that knows really anything about it so I’m hoping here I can find support.

FIND SOMEONE TO SAY “OMG ME TOO” just any connection and advice I hope to find here. I’m afraid I’ll die before they finally decide to take action.

In Memory of Sarah Fraik ~ June 13, 2011

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in-memory

Sarah recently had surgery to remove a tumor from her pituitary gland in the hopes of treating her Cushing’s Disease.  She died on June 13, 2011 after a brief illness at the age of 28.

More information will be provided when it becomes available.

~~~~~~~

Sarah F’s mom posted this: “we will be setting up an account at the royal bank tomorrow afternoon for sarah. we are planning on having a bench put in her name at transfer beach in ladysmith after we get her home. if you would like to help you can make a donation instead of sending flowers. we will post when we have everything set up. thank you everyone for your support and kind words for sarah…..”

Also from Sarah’s mom: “a account is set up for sarah fraik at any royal bank the number is 02000 5000823 any donation is welcome to help with bringing sarah home and getting a bench with her name put on it at transfer beach ladysmith thanks everyone.”

Beth Grant writes: “I already have asked her about how people from out of the country can donate and I’m still waiting to hear back. But my offer also stands to have people paypal me or send cheques and I can just go to the bank here and deposit it to the account. There’s an option to Send Money, so you just click on a few things and it gets sent. I’ve sent and received through paypal many times and never had trouble.”

Conversion from US to CAN: http://www.advfn.com/currency-converter/us-to-canadian-dollar.html

~~~

From the Acromegaly Community:

Taking a Lesson From a Tragic Loss

on Wednesday, June 15, 2011. Posted in Blog

Wayne Brown
AcromegalyCommunity.com

Last night I was at an open-air concert; and while waiting for the show to start, I was unexpectedly faced with mortality.  Everyone at the show was fine, but when I was reading social networking posts, I kept reading people’s messages of peaceful rest to a woman I didn’t know; but I could totally relate to her struggles with a rare disease.  Sarah, a young woman dealing with the effects of Cushings Syndrome, passed away from a head cold- a medical complication at the ripe old age of 28.  I didn’t need to know Sarah to know that this was just wrong!

Based on what I have read from many of Sarah’s friends, I got a brief snapshot of the situation.  Not only was she a very special woman that many people loved, her passing was made more tragic because maybe it was avoidable.  It seems that several people were concerned that the quality of her medical care was at least partly to blame for her early passing.  Now I did not know Sarah or her issues to agree or disagree, but it brings up a really important topic of discussion for the rest of us: what is a good relationship with your medical professional?  For those who are unfamiliar, Cushings Syndrome is a hormonal disease that impacts people who have a consistently high exposure to cortisol (a hormone released into the body as a response to stress).  I have had cause to learn a lot about Cushings because of the number of Acromegaly patients who have to juggle the effects of both diseases.

While I know this discussion can be uncomfortable, I would like for you to ask yourself honestly: DO YOU TRUST YOUR MEDICAL PROFESSIONAL?  Please understand the question I am asking is different than whether you like your doctor.  While it is nice if you like your doctor, it is not as critically important that you like your doctor, as it is that you trust him or her.  I promise you that I am not golfing buddies with any of my medical professionals; but… I am confident that they are providing me with the best possible medical care I could ask for, without my traveling to a dozen other cities.  Ultimately, this is an essential question you need to answer for yourself because your answer can directly impact the quality of your health care, and therefore the length and quality of your overall life.

Now does trusting your doctor mean they know everything there is to know about all things medical?  NO!  Just because you trust your doctor or nurse does not guarantee that they know everything about every disease you may ever have.  Willingness to learn accentuates, not lessens a doctor’s credentials as a diagnostician.  Many of us have had cause to teach our doctors something about our disease not covered in the textbooks yet.  When I was growing up, I knew a doctor’s wife who used to love to joke that ‘that’s why it’s called practicing medicine.  They have to keep trying till they get it right.’  It is impossible for any one medical professional to know everything about everything.  The question you need to answer for yourself is whether you trust them to listen to what you say and help you to make your life more pleasant, because of or in spite of your medical situation.

Sadly, for some of us, our medical issues are not a joke but a depressing reality- that we have to go years before we find the right medical professional who can both treat us medically AND handle our personalities in a way that will help us to trust our doctor/nurse/physician assistant.

Now, if it is true that the doc is merely practicing, why is our trusting them so essential to the relationship?  That is simple.  Honesty.  If you are anything like me, you would rather go to a medical office than a psychic for your medical care.  If you are withholding from your doctor, for any reason, you are detracting from your own medical care – and making it nearly impossible for your doctor to properly treat you!  I am not saying you should call your doctor’s office because you stubbed your toe getting into bed last night and your nail is bruised in the morning, but if you stubbed your toe last night and you were in so much pain that you woke up and took seventeen aspirin, this is an issue worthy of a chat.  Your medical professionals need to understand who you are, how you feel, what your pain threshold is, and how you manage your medical issues when he or she is not around (yes, this means your OTC treatments AND if some of your self-treatments do not necessarily come from recognized pharmacies- while this may be an awkward conversation and you may get scolded, such decisions by you can effect your treatment too!).  Medical professionals and their patients must know they can trust each other.

Ultimately, we are the patients- its kind of like being the customer at a store.  If you want to do hours of research before you buy the best can opener, or if you want to consistently look over your doctor’s shoulder, that is your right; but ultimately you need to have faith in the purchase you make at the store, just as you need to have faith in your doctor’s course of treatment.  If you do not feel comfortable enough doing that, then you have a decision to make: is your lack of trust in the doctor their fault, or is it yours (as the patient)?  Again, not an easy question to honestly answer, but essential in our long-term well-being!  If you have been withholding too much from the doctor, waiting for the doc to miraculously figure out what’s wrong seems both unlikely and unfair- and largely a mess of your own doing.  Going to another doctor is simply going to slow your treatment, and likely perpetuate the problem.  It is not the doctor’s fault that you are not honest with them about your issues.  Open up with your doctor and have a frank discussion- see where things go from there.  But if you are honest with your doctor, and you still feel like the doctor is either uninterested, unable or unwilling to figure out your issues, or is flat out too busy to give you the focus you require and deserve, well then you need to look at possibly seeking a new medical professional.

Just remember, starting with a new doc can be difficult.  If he or she is popular, you might wait at least a month or two just to get that first appointment where no treatment might legitimately get started. During this time that you wait, your issues are not being treated at all.  On top of that, you and your new doc both need to figure each other out, and again you need to try to build that trust and understanding with a new doctor and staff, working toward a momentum of medical stability.  All that being said, if you are not happy, and are ready for the switch, then go for it!  Remember, you are most responsible for your own medical care, since you are the person most greatly invested in your own well-being!  Don’t stay with a doctor simply because you are afraid to leave.  If you are ready to move on to a new doctor’s office, just make sure you are doing it for the best reasons.  Hopefully your new doctor’s office will offer you the ability to trust and be totally forthright.

I am just saying that if you are dealing with some sort of extraordinary medical condition, please invest your time to be totally honest with your physician(s).  Talk with him or her in a frank and honest way.  If your disease has major issues that are kind of sensitive to talk about, and you are afraid to talk face-to-face with your doctor but feel you can be more frank with the nurse or physician assistant, then do that!  If the issue is particularly awkward for you, then at the very least, keep a journal and share that with your doctor’s office.  At least the information is being conveyed.  While there are preferred methods of sharing, getting the information is more essential than the method of delivery.

I don’t know what the facts are that surround Sarah’s case, but it is a tragedy any time a 20-something person passes away.  Don’t let her passing be for nothing.  We can learn from her.  Take care of yourself medically, and work to foster a relationship of openness and trust with your medical professionals.  Without trusting our medical professionals, how can we expect them to treat us in a way to actually improve our health?  And at the end of the day, what is more important than our health?  Dare I say it… nothing.

In Memory of Sherry Carlson ~ May 30, 2020

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Sherry passed away the afternoon of May 20, 2020, naturally and peacefully in her sleep.

She loved her community and we know how grateful she was to every one of her friends on here for the genuine love and support she’s received over the years.

We (her family) are processing, but will share details about her celebration of life when we’ve worked it out.

Sherry’s Slideshow:

Cushing’s Help message board member sherryc presented this PowerPoint at Pioneer Pacific College. It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

Sherry’s bio:

I have been very ill for many years now, since 1999 that I know of. But it had always come and gone, until 2004 when it decided to stay. At first it was a mystery as to what was wrong. I was seeing a psychiatrist that felt very strong that what I was dealing with was endocrine related. He mentioned a few things that it could be and one was Cushing’s, so I looked it up on the internet and sure enough I had many of the symptoms of Cushing’s disease, moon face, buffalo hump, weight gain, big round belly, red face, very ruddy complexion, acne, nausea, depression, fatigue, hirsutism, depression, anxiety, hypertension, unusual bruising, and highs and lows of energy.

I found this support group on the internet at Cushings-help.com and they helped me find Dr.William Ludlam at OHSU. He told me I had a suddle case of Cushing’s and had a pituitary tumor on the right side displacing the pituitary to the left. Although Dr.Ludlam originally saw tumors on both sides, I had a pituitary tumor that seemed to be cyclic. When it turned on I had major Cortisol energy, when it turned off I got very achy, nausea, and very tired. In March of 2006 I was officially diagnosed after 1 long year of testing, and went on to have my first unsuccessful Transphenoidal pituitary surgery 3/23/2006 with Dr. Johnny Delashaw at OHSU. I had a second unsuccessful pituitary surgery 10/12/06 and finally a BLA 11/7/06.

I am now cured of Cushing’s disease 2 1/2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back, damage to soft tissues throughout my body, Diabetes, High lipids, Fatty liver, I have no usable veins, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need in emergency’s. I had my period for 1 year straight so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working hormones any more. I am on all replacement hormones, except DDAVP. I ended up with a new doctor that gave me a severe case of steroid induced Cushing’s. I am still dealing with this aftermath; the details are in my timeline. My timeline will update you as to where I am at now. I will try to keep the timeline updated so you know where I am at as far as getting better.

Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case.

So if you believe you have Cushing’s, get to a specialist that knows Cushing’s disease, don’t waste time on doctors that do not know the disease, it is so worth it in the end to get to the right doctor. This disease is one of the hardest endocrine diseases to diagnose. Cushings_help.com/ founder MaryO has been a lifesaver for me and still is, I have met people from all over the country, over the years I have made many friends that have, had or are still in the diagnostic phase.

I live in a small town of around 10,000 people and I hear all the time, oh I know so and so that had or has a pituitary tumor. What I am finding out is there are a lot of people in this town that have this disease, it is suppose to be rare, one in a million, my next goal is to get my story out and have local people contact me, then start a support group. Maybe get some accurate numbers of actual pituitary/brain tumors and find out why this is happening in this small town. It will be a big adventure but if it saved even one life it will be worth it. I know of 3 definite pituitary Cushing’s cases so far.

My Timeline of illness to diagnosis

3rd pregnancy 1994 pre-term labor again, stopped, gestational diabetes, son born 3 weeks early and I got toxemia after my son was born, was told this is very rare. I should have known RARE would be a word I would hear a lot in my future.

1995-Left breast discharge, surgical biopsy done, lump removal of marble size, this should have signaled a full hormonal work-up, but didn’t. No cancer.

1997-1999 Depression and severe anxiety with panic attacks…Diagnosis of Fibromyalgia. Weight 130#

1999- First occurrence of unknown mystery illness. Hypertension, fatigue, flushing, swelling of face, hives, and much more that lasted several months. Sick on and off with mystery illness. Tumor was turning on and off.

April 1999-2004-Severe nausea and vomiting, extreme fatigue, weight gain of 50# in about 1 years time, headaches, dizziness, hypertension, tachycardia, muscle and bone pain, malor rash, other rashes, IBS, occasional unexplained low grade fevers, anxiety and depression much worse, increased hirsutism, almost constant mouth sores, memory loss, cognitive difficulties, loss of coordination, syncope, excessive energy spurts, insomnia.

**Off work for 3 months April-June due to symptoms…Saw PCP, Gastroenterologist, Rheumatologist and Cardiologist… diagnosis Peptic ulcer/Chronis Gastritis and Chronic pain Syndrome and Tachycardia/Hypertension. Abdominal/Pelvic Cat scan done and fatty liver noted. High Cholesterol and Triglycerides discovered.

Nov-2004 My Psychiatrist was the first to mention Cushing’s or a Pheochromocytoma; he felt all my symptoms where due to endocrinology. He did not want to see me again until I was seen at OHSU. I have never seen him again due to insurance change. I really need to thank him.

Dec-2004 10# weight gain in 1 week with severe abdominal distention….another Cat scan done, lymph nodes around vena cava where enlarged.

Jan-2005 Went to OHSU for diagnosis….First saw an endocrinologist that was not experienced with Cushing’s, she ordered 1 UFC and 2 midnight saliva tests, and told me to test when I felt my worst; Tests where low so she felt my symptoms where not due to my endocrine system. Boy was she wrong. I needed to test when I felt good, or high.

Feb-2005 Went to the Pituitary Unit at OHSU and saw Dr.Ludlam, he believed that I had Cushing’s but we needed to prove it. MRI saw adenoma on right side displacing pituitary to the left. He originally thought he saw tumors on both sides, he was right. Lot’s of testing done. Testing did not prove it yet. Dr believes I am Cyclic. It took 1 year for diagnoses from Dr.Ludlam.

April-2005 Peripheral vision test done by local optometrist, showed some peripheral loss in left eye.

May 2005-Lot’s more Cushing’s testing, PICC line in all month. Major dizziness, passed out and fell this month. Diagnosed with Type 2 Diabetes but cannot treat due to extreme highs and lows, trying to control glucose with diet. I have very high and low Cortisol days. I am very cyclic at this point.

June/July 2005-Three TIA like event’s… left sided weakness and numbness. Saw Neurologist that sent me to Neurologist at OHSU. Found three new white matter lesions seen on my brain MRI. Unknown cause. 5 in all now.

August 2005-Had to leave my beloved job teaching Medical Assistants due to symptoms. I had one more TIA like event.

Sep-2005 Neurologist at OHSU ran several tests and came to the conclusion that if in fact we could prove Cushing’s, all of my symptoms where due to this disease. I stopped all medications by choice.

Nov-2005 I went back for extensive testing at OHSU with Dr.Ludlam and sure enough the numbers started proving my case. Very high midnight serum Cortisol’s among other high tests.

Jan/Feb 2006-PICC line in and extensive Cushing’s testing done with CSS in Feb. CSS showed left sided gradient strongly. Cortisol numbers have proven my case, finally…. I had a midnight serum Cortisol of 34.1, the Midnight Salivaries, Midnight Serum Cortisol, UFC’s and CSS all positive for Cushing’s disease.

March 23, 2006 I finally had Pituitary surgery at OHSU, they found the tumor on the left side bigger than originally though and removed the whole left half of my Pituitary gland. I was in the hospital for 6-days due to complications of Diabetes Insipitus and Adrenal Insuffiency.

April-2006 Seen in the ER 3 times. Hospitalized for 4 days again due to complications, Blood cultures showed infection. I am on very high doses of Hydrocortisone and also taking DDAVP for the Diabetes Insipitus.

April 2006- I am finally getting better somewhat…..This has been one heck of a roller coaster ride. I am now on Hydrocortisone 40/40/30. I am told we won’t know if I am cured for 3-6 month’s.

June 5, 2006- Off Hydrocortisone stimulated my Cortisol to 24 on the ACTH stim test.

August, 2006- Not cured, testing again!!! I had that gut feeling when I woke from the first surgery. I just knew…

October 12, 2006- Second Pituitary surgery, more tumor on right side, most of my pituitary gland removed. Surgery unsuccessful, still have Cushing’s disease.

November 7, 2006- BLA …soon to be cured of Cushing’s.

Dec 2006/Jan 2007- Very sick due to another blood infection. Lot’s of adrenal crises due to infections. 3 blood infections to date.

November 2008- 2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back requiring permanent narcotic pain relief through a pain center, damage to soft tissues throughout my body, diabetes, high lipids, fatty liver (NASH), Osteopenia, I have no usable veins, they are destroyed due to the high Cortisol, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need, I had my period for 1 year straight because of lack of appropriate hormones after my surgeries so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working pituitary hormones any more at all. I must replace all pituitary hormones, except DDAVP. Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well.

June 21, 2009-Since writing in November I sat on the couch in severe AI until around September when I was put with a doctor that has been seeing Cushing’s patients for 38 years, he put me a on a very high dose of Dexamthasone and Florinef and forgot about me, he ended up with cancer and is no longer seeing patients. In the meantime, I got severe steroid induced Cushing’s and have had severe complications from it. I started falling from atrophied muscles and broke both hips, I ended up in a wheelchair, which I am happy to say I am out of now, had to have surgery on my left hip to pin it, it is still not healing, I am having absorption issues with calcium, iron, vitamins, minerals and meds. So I have to do my DEX by injections. We are now trying to find out why I am having absorption issues. I have a new endo at OHSU Dr.V and he is wonderful. He has brought my steroids down to a safe level and did it slow. He really seems to know his stuff as far as after care. I do not think he does the diagnosis process for Cushing’s. I would definitely go back to Dr.Ludlam if I had to go through it again. But I know there are many other great Cushing’s experts out there, this was just my experience. I know I will get better, but it may be a while. I am still at home handicapped, can barely go to the grocery store and I do not drive as I am on a high dose of Morphine. My goal is to get my pain under a 5 and be able to drive myself around. That is a good goal for now. Then on to finding out why my small town has so many tumors and starting a support group. I just need to get to a point where I feel I can be a good advocate for Cushing’s and right now I can’t. But that is the goal.

Nov 16, 2009

I am still not well, I have broken my ankle, have no idea how, woke up one morning and it was broken. I am almost down to my 1/2 mg of DEX and am happy about that. had 2 surgeries in Sep and Oct on both elbows for ulnar nerve decompression. The first surgery got infected and a week later I had sepsis, which they think I had a small bowel preferation that healed itself. I was ambulanced up to OHSU and was in AI. It was a very rare bowel bacteria running through my blood stream, I was very sick. I just want to get well, but for some reason I am going through one thing after another. I am praying that 2010 will be my year of healing and I will have a good quaility of life then.That is what I am counting on.

UPDATE January 23, 2016

2016: wow has the past few years have been a roller coaster. I don’t know dates because I’m having memory issues at 47 years old.

I have had 5 port-a-caths. I kept getting sepsis and every time they would take me to surgery and remove my port. Then place another when I was better. I have no veins that work. So I received IV port fluids 2-3x a week. I just recently had sepsis, when I get it I have a 50/50 % chance of survival. They removed my port and did not place another. So no more fluids which was for Pots. I had labs done through my port every 2 weeks. Now everything stopped. I am producing small amounts of cortisol. After a BLA.

Intermittently. I am just now starting to feel good for 2 weeks now. I have started the exercise program called T-Tapp. I love it. No jumping or hard moves. 15 min and that’s it. I am a grandma of 2 and one due any day.

So for now I hope I’m on the road to recovery at least the best I can.

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She thought her weight gain was due to giving birth. She learned it was a tumor

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Dr. Irmanie Hemphill, who first thought her weight gain was due to having a baby. Doctors at Cleveland Clinic Florida in Weston diagnosed her with a tumor in the pituitary gland in her brain.

In the summer of 2019, Irmanie Hemphill gained a lot of weight, developed acne and had high blood pressure. She attributed it to her body adjusting from giving birth just six weeks prior.

“I was thinking maybe it was just hormonal changes from having a baby,” said Hemphill, 38, of Pembroke Pines.

But when Hemphill, a family medicine physician, saw that her nails were turning dark and she gained five pounds within a week, she knew it was something more serious.

Blood tests ordered by her physician came back normal, with the exception of high levels of cortisol detected via a urine cortisol test, which she requested after researching her symptoms online.

The next step was to find out where the excess cortisol was coming from: either her kidneys or her adrenal glands, which produce hormones in response to signals from the pituitary gland in the brain.

The first MRI of her brain did not detect anything abnormal, so her endocrinologist attributed her symptoms to her body adjusting post-pregnancy.

Hemphill sought a second opinion at Cleveland Clinic Weston, where more MRIs of her brain, combined with an Inferior Petrosal Sinus Sampling (IPSS) procedure, detected she had a tumor on her pituitary gland. That led her to be diagnosed with Cushing’s Disease — caused by excess cortisol.

TWO TYPES OF PITUITARY TUMORS

There are two types of pituitary tumors: those that produce active hormones, like the one Hemphill had, and those that do not, which grow in size over time and do not manifest symptoms right away.

Hemphill’s tumor was producing adrenocorticotropic hormone (ACTH), which causes the adrenal gland to produce more cortisol.

Many people with Cushing’s Disease experience high blood pressure and high blood sugar, muscle fatigue, easy bruising and brain fog. If left untreated, the condition can lead to pulmonary embolisms, diabetes, osteoporosis, strokes and heart attacks.

“It was a little bit of relief but also sadness,” said Hemphill, of finding out her diagnosis. “I was very happy that I got a diagnosis but now it’s like, what’s the next step?”

LESS INVASIVE WAY TO REMOVE A PITUITARY TUMOR

Hospitals in South Florida are at the forefront in developing new research, techniques and technologies for pituitary tumors.

The tiny bean-shaped pituitary gland is located at the base of the brain and controls many of the body’s hormonal and metabolic functions.

Last June, neurosurgeon Dr. Hamid Borghei-Razavi of Cleveland Clinic Weston removed Hemphill’s pituitary tumor through her nose. This type of procedure allows surgeons to remove the tumor without damaging the brain.

“It’s a less-invasive approach compared to 20 years ago, when pituitary tumors were removed through the cranium,” he said. “Now, with new technologies, more than 95% of pituitary tumors can be removed through the nose.”

The procedure takes just a few hours to complete, based on the size and location of the tumor. Patients usually stay at the hospital for one to two days afterward for observation.

The removal of Hemphill’s tumor, which was three to four millimeters in size, put an end to her Cushing’s Disease and her symptoms, though it took six months to a year for Hemphill to feel normal. (She was prescribed cortisol for six months until her adrenal glands could restart producing cortisol on their own.)

“Sometimes it’s very hard to make a diagnosis for pituitary tumors because we don’t see them in the MRIs,” said Borghei-Razavi.

“We call it MRI Negative Cushing’s Syndrome. It means we don’t see it in the MRI, but the cells are there,” he said.

Borghei-Razavi and Hemphill credit the Inferior Petrosal Sinus Sampling (IPSS) test as pinpointing her tumor. Cleveland Clinic Weston is among only a handful of medical practices in South Florida that use this technique.

Three Ways to Remove the Tumor

Most pituitary tumors are benign. The challenge is when it comes to removing the tumor.

“Pituitary tumors come in all shapes and sizes,” says Dr. Zoukaa Sargi, a head and neck surgeon at Sylvester Comprehensive Cancer Center at the University of Miami.

“There are non-functional tumors that do not secrete hormones that can reach extreme sizes of up to 10 centimeters before coming to medical attention. This is the equivalent of the size of a grapefruit,” he says.

“Then there are functional tumors that produce hormones that are typically discovered much sooner and can be only a few millimeters in size before coming to medical attention. A small proportion, less than 1%, are malignant,” he adds.

There are three treatment options for pituitary tumors: surgical removal, medical therapy and radiation.

“Medical therapy is only applicable in certain functional tumors that produce hormones,” says Dr. Ricardo Komotar, a neurosurgeon who is director of the Sylvester Comprehensive Cancer Center Brain Tumor Initiative.

“Radiation is an option primarily for inoperable tumors with high surgical risk. Surgical removal is the optimal treatment in the vast majority of pituitary cases, conferring the greatest benefit with the lowest morbidity,” he says.

Dr. Rupesh Kotecha, chief of radiosurgery at Miami Cancer Institute (MCI), part of Baptist Health South Florida, says there are a number of different hormones that the pituitary gland can secrete.

“Prolactin is the most common form of pituitary adenoma that’s functioning and accounts for 30% to 50%,” he said.

Excess prolactin can cause the production of breast milk in men and in women who are not pregnant or breastfeeding.

Kotecha said the next most common are growth-hormone secreting tumors, which occur in 10% of patients.

ACTH-secreting adenomas — the kind that Hemphill had — account for 5% of patients, while 1% secrete TSH, which causes the thyroid gland to be overactive.

MCI’s Proton Therapy delivers high-dose radiation that treats the tumor’s area, allowing for surrounding tissues and organs to be spared from the effects of radiation.

“The pituitary gland essentially sits in the middle of the brain,” says Kotecha. “It’s sitting in the middle of all of these critical structures.”

From https://www.miamiherald.com/living/health-fitness/article251653033.html

In Memory of Melinda Smith ~ May 9, 2014

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melinda-smith

 

Sadly, we lost another Cushing’s patient on Friday, May 9, 2014.  Melinda was a member of the Cushing’s Help message boards since Jun 24,  2007.

She was only 25 and leaves behind a young son and many loving family members.

Just last year she posted:

I’m not really sure where to put this post so I’ll just put it here under miscellaneous.

Last Friday was probably the closest I’ve ever come to actually dying. Luckily, my dad came downstairs to check on me. At some point Friday I completely blacked out and my dad found me totally unresponsive, barely breathing with foam in my mouth. The paramedics told my dad that if he hadn’t found me when he did I would of definitely died.

Nobody knows what caused this to happen. The hospital is trying to say that I overdosed on drugs, which is TOTALLY 100% untrue. Especially, since I hadn’t even taken my medicine because I was staying up with my mom to help her clean and move my stuff upstairs from the basement. By the time the ambulance got me to the hospital I was still unresponsive and my kidneys had shut down.

I don’t remember anything from Friday or really much from Thursday night. All I remember is waking up in the ICU at the hospital in the middle of the night with some grumpy nurses who kept asking me why I tried to kill myself. I just don’t understand where they got the idea that I was trying to commit suicide, all of my medication was accounted for plus some.

Another thing, now I’m on oxygen 24/7. Since Friday I have a hard time breathing so the hospital sent me home with an oxygen tank. I feel so old. I’m only 24 and I don’t even smoke yet I’m stuck with an oxygen tank. Something just isn’t right.

We talked with my regular doctor and she thinks that I might of had a stroke or maybe a seizure. I go see her on Wednesday. But until then I can’t do anything and have to be supervised at all times.

It’s really strange, I’m being treated like a baby but I feel like I’m 80. I just want to be a normal 24 year old and feel like my age.

 

Information from the obituary at http://www.stephenson-wyman.com/obituaries/Melinda-Smith/#!/Obituary:

Melinda “Mindy” Smith, age 25, of Harrison, passed away suddenly on Friday, May 9, at her home. Mindy had attended Farwell High School where she had been an honor student and participated in track and cheerleading. She graduated from Clare High School in 2005. She was currently attending college and was hoping to pursue a career as a Psychiatrist. Mindy talked often of becoming a doctor to help others who were struggling with Cushing’s Disease.

Mindy had been battling a fight with Cushing’s Disease since 2005. She fought hard and long, but unfortunately it was a fight that she could not win. She was loved by many, but will be missed by many more.

Mindy is survived by her son, Landon Smith, parents, Deb (Marc) Davis, Fred (Nola) Riggs, of Harrison, and Ralph Rydman, her special friend, Ryan Smith, siblings, Alisha Green of Farwell, Marrissa Rydman of Gresham, Oregon, Misty Riggs of Weidman and Mike Riggs and Seth Riggs both of Florida, her grandparents, Gary (Penny) Smith of Clare, Sheryl (Phil) Wentworth of Harrison, Janet Riggs of Harrison, and Jay Davis of Clare. Also surviving are many aunts, uncles, and cousins that will miss her dearly. She was preceded in death by her grandparents, Dawn Wiggins of Muskegon, Harold Riggs of Harrison, and Carol Davis of Clare.

Funeral services will be held on Wednesday, May 14, at 2:00 PM at the Clare Chapel of Stephenson-Wyman Funeral Home with pastor John Kasper officiating. Friends may meet with her family at the funeral home on Wednesday from 11 AM until the time of services. Memorials may be directed to the family.

Rest in peace, Melinda

In Memory of Gregory J. Bart Jr. ~ May 7, 2016

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Greg died of a presumed heart attack at the age of 55.

September 19, 2015 he said “I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I’ll have to consult my doc and see if this (Primary aldosteronism) may also be an issue.”


He wrote this about a year ago: On your daughter’s wedding day, you wouldn’t go down to the swap meet to pick out some second hand, ill-fitting dress, would you?

You would not.

If you were a baseball team manager getting ready for the World Series, you would not make a call down to your minor league affiliate and ask them to send up their 3rd best pitcher for the 7th game, would you?

You would not.

If you were being audited by the IRS, you would not go to the local high school and ask for assistance from the remedial accounting class, would you?

You would not.

And so, why would you not insist on, in fact demand, the very finest MRI equipment for your pit scan? A false negative is an invitation for massive bills down the road (for the blue pencil people in your insurance carrier’s claims dept.) and years of misery for you, the patient.

And you would not settle for a myopic tailor for that dress, would you?

You would not.

So, make sure your pit scan is done under the proper protocol, and looked at by an experienced hand. Without that, your time in the machine may be wasted.

You deserve the best. This disease will try to do it’s worst. Don’t let it, and don’t let your case be the one that falls in the cracks in the machine, or the system.


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Hannah B, Pituitary Bio

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We first met Hannah Blankenship and heard her story in June 2020. She was diagnosed with Cushing syndrome, which s caused by a tumor on her pituitary gland and creates many complications. Right before the season started, she was cleared to play, even though the tumor was not removed.

Above from https://www.wvnstv.com/sports/wyoming-east-warrior-with-cushing-syndrome-beats-all-odds-returns-to-court-in-state-tournament/


Below is adapted from a news item at https://www.wvnstv.com/news/wyoming-east-student-shares-her-life-changing-experience-and-fight-with-cushing-syndrome/

Hannah Blankenship is a rising junior at Wyoming East High School, and in the last two years her life changed dramatically. She was just a 16-year-old girl enjoying homecoming, sports, and friends until her world turned upside down. 

“I started to have unbearable pains in my shins. At first we just thought it was shin splits, but it didn’t take long to figure out it was something more,” Hannah said.

Hannah was a stud on the basketball court and also enjoyed running cross country, but that quickly came to a halt. 

“I would be playing, and my feet would just fall asleep and my legs would lock up,” Hannah said. “I couldn’t feel anything, I couldn’t move. I just had to stand there. I couldn’t walk, I couldn’t do anything.”

After countless doctors appointments and misdiagnoses, Hannah was diagnosed with Cushing syndrome. She has a tumor on her pituitary glad [sic] which causes it to release too much cortisol into her body, affecting her metabolism and growth hormones. It also affects her energy levels and her ability to recover from workouts. 

“Labs are normal, this is normal and I knew this was not normal. I had never felt so helpless,” Jamie Blankenship, Hannah’s mother said. “Once we found out and got that diagnoses and started reading and concentrating on the symptoms, we realized that was definitely what was going on she has every symptom.”

Hannah is not alone in this journey, she has a family who is her backbone, friends, and a community that supports her every day.

“It is really hard to understand why. I just think there are some things in life we will never have an explanation to, but just being around my friends and teammates helps a lot, and I have a great support system that picks me up when I am down,” Hannah said.

There are days that it is hard for her mother to stay strong, but she is so thankful that Hannah has so many that are there for her. She hopes by sharing their journey she will help someone else.

“She has so many in her corner and she stays positive, and knows she is going to come back. I am thankful. I hate that this has happened to her, but I am thankful we have a diagnoses and I hope we can help someone else,” Hannah said.

At the end of the day, it is Hannah’s faith that is getting her through this unbearable journey.

“She has always been up beat and positive, she has all the faith in the world in God and I think that is what has brought her this far,” Jamie said.

Janice B, Pituitary Bio

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I was married 38 years when I became sick in 2011, but the family doctor and my husband wouldn’t believe me. They thought I was lazy, fat and crazy when they shipped me off to a mental ward in a hospital. I knew I was physically sick with Cushing’s Disease, but I couldn’t convince the psychiatrist. I left my husband, got a new doctor and was diagnosed with Cushing’s Disease in 2012. I had successful surgery in April 2013 to remove the pituitary tumor. I had Adrenal Insufficiency and was put on 5mg of prednisone as my body would not produce its own cortisol.

On Sept 27th/2016, I went into an Adrenal Crisis in an airport in Germany (I live in Canada) was hospitalized one day in intensive care, two days of regular care then I flew back to Canada and have been struggling ever since with Cushing’s symptoms. I was on two IV’s continuously in Germany for three days. I know one was prednisone and don’t know what the other was. But I do believe those doctors saved my life. However, all my Cushing’s symptoms returned and from October 2nd/2016 to December/2016, I gained 26 pounds while eating very little and should have lost weight.

I found an MD who also practices integrative and complementary medicine. He has a master’s in nutritional biochemistry. He had me do a Live Blood Cell test. My blood cells were all stuck together in a long chain and not free-floating like the way they should be. Based on this, the doctor said I had bad bacteria, fungus, and inflammation. He also said this is indicative of extreme fatigue. He said it was the starch in my body that created this problem. In April 2017, he put me on a low starch diet, and by July my adrenal awakened and was producing its own cortisol. I was no longer Adrenal Insufficient and taken off prednisone.


By Sept/2017 I was able to walk 13 km at the Toronto Zoo, could dance and golf. Most of my Cushing’s symptoms had disappeared. I got my life back.

I ate butternut squash for months, as it was on my list of approved foods, and became sick with Cushing’s symptoms again and got a burning in the vagina. I didn’t realize Butternut squash is starchy. My next blood work showed elevated White Blood Count, , Neutrophils, and Monocytes. All of them indicative of bad bacteria, fungus and inflammation. Click here for the bloodwork report.

There was no source found for the infection. I was put on Microbin and a second level of antibiotics which did nothing. Then, I was put on cipro flax which cleared up the infection. After six months, and strict adherence to my no starch diet, I started to recover from Cushing’s symptoms giving me a better quality of life. I also lost weight.

For three days in a row, I ate homemade tomato sauce. I got a burning in the vagina and my Cushing’s symptoms returned.  ( Click here for the bloodwork report. ). Two internet sites said that tomato is non-starchy, but MedicalHealth.com says tomato is a starch. My friend, who is diabetic said if she is on a low-carb diet, she can’t eat tomatoes. My next bloodwork gave the same results as above. Over five months, while maintaining a no starch diet, my Cushing’s symptoms lessened giving me more energy and I lost weight.

After eating a handful of cashews for 4 days in a row I woke up with a burning in the vagina and my Cushing’s symptoms returned. This has now become my indication that I have eaten something starchy so I figure out what it was. I had bloodwork done the next day. This is the result. ( Click here for the bloodwork report. ). Cashews are starchy. Again the same elevated bloodwork results as above. Antibiotics cleared up the infection. After five or six months on a strict no starch diet, the Cushing’s symptoms lessened. My energy and strength returned and I lost weight.

Looking back at my old bloodwork from 2011 when I was in the psychiatric ward, it showed the same elevated results except that the WBC went up as high as 23 and the hospital mentioned that there was no source found for the infection. Another time, in 2011, I went to the ER, the records showed the same: elevated WBC with no source of infection.

To prevent this from happening again, I found a way to test for starch in foods using iodine. See how under DIET section.

Unfortunately, I had too much white wine, what can I say I’m only human and ate barbecue sauce on 5 May/2019.  Here are my results. I am back to having Cushing’s symptoms. But after six months of being back on the no starch diet, I have recovered from the Cushing’s symptoms.

I ate corn-fed steak and got a burning in the vagina and became sick with Cushing’s symptoms again. Steak is a non-starchy food. But the cow ate corn, which is starchy, and I ate the cow so, I got sick again with Cushing’s symptoms. Unfortunately, I didn’t have the bloodwork done at that time to show white blood count numbers.

This cannot be a coincidence. There is a definite pattern that can’t be ignored. Each time I unwittingly ate starchy food, I would go to the doctor and ask for bloodwork to be done.

I had a cyst on my lower eyelashes surgically removed. This cyst formed because of repeated infections. The cream the surgeon gave me Tobradex has only 2 ingredients: Tobramycin and dexamethasone. I learned Dexamethasone reduces inflammation by stopping cells from releasing chemicals that normally help produce immune and allergic responses. The Dex stops the allergic reaction I’m having from the starch and by doing so lowers my cortisol. OMG! This is why when I stop eating starchy foods for six months, (because it takes that long for the starch to break down and get out of my system) I recreate what the Dex is doing and my Cushing’s symptoms lessen and my cortisol is lower. This is why my cortisol levels became normal seven months after eating the corn-fed beef because I didn’t have any further setbacks from eating starch. I was starting to recover. All my bloodwork confirms starchy foods create inflammation. My cortisol suppresses when given the Dex Suppression Test. For me, I was given one dex pill which did nothing and my cortisol did not suppress. Then the doctor gave me six dex pills and the cortisol did suppress. After this test, I had more energy and didn’t feel like my legs would collapse.

An interesting note is that some endos have Cushies taking ketoconazole, which is used to treat skin infections and is an antifungal, to help lessen the symptoms. But Cushies have found it works for only 2 years then becomes ineffective. So the connection here is that Cushies have infection and fungus, which my bloodwork corroborates. We can lessen our symptoms when we get rid of the source of the infection. Therefore, if I get rid of the starch in my body, will I get rid of my Cushing’s symptoms and the infection?  This is the question I am hoping my fellow warrior Cushies will answer by trying my diet.

Let’s RECLAIM our lives together.

Janice’s website is at https://www.janicebarrett.ca/

Angelique L (Angelique), Undiagnosed Bio

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I am 54 year old woman with no kids. I had a hysterectomy at age 44 and went through the change. I was slightly overweight at the time and went on a healthy weight loss programme over 5 years and got down to my goal weight. Life looking good.


Fast forward to 2019 and I got a very painful and swollen pituitary gland infection on the right side of my face. Admitted to hospital and administered 60mg Prednisone intravenously. Then prednisone for 1 week tablet form after I left the hospital. No actual tapering off, just a prescription of 20mg daily.


This when the problems started, after 2 weeks my moon face appeared, bloated and fatigued I went to my GP. He said Cushings probably.


2 years later I am 60lbs heavier, distinct lump at the base of my neck, fat on my upper arms and between my thighs, belly, chronic fatigue. The weight is extremely stubborn. My sex life is dead, my relationships are foundering and my depression and anxiety is managed by seclusion and sleeping.


I am desperate to find a solution, but fearful my search will tell me I am damaged and have a short life expectancy.
So I came here perhaps to find support. Too many of the stories, sound just like me.


Take care all. Thanks for reading.
Angelique

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