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Natalie Stokes, Pituitary Bio

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A SINGLE mother suffering from a debilitating rare disease effecting her whole body has been left “disgusted and appalled” after being judged ‘fit to work’.

Natalie Stokes, of Saint Agnes Close in Studley, suffers from Cushing’s disease, a condition where the body produces excess steroid hormones. She had her disability benefits withdrawn eight weeks ago.

Natalie had her allowance withdrawn after an assessment carried out by the Department for Work and Pensions (DWP) in January deemed her ‘compos mentis’ and fit to work – despite both her GP and consultant brain surgeon providing a sick note.

The 33-year-old was diagnosed with Cushing’s last year after countless trips over eight years to see her GP.

She started claiming employment and support allowance (ESA) last January.

She said her condition, which has deteriorated over the years, is “changeable” and suffers fatigue, nausea, insomnia, irritability, memory loss, poor concentration and as a result depression.

Physically, Natalie is tackling life-limiting side affects which include, extreme weight gain, excess hair growth, a rounded ‘moon face’ due to fat deposits, thin skin, boils and severe pains from movement and incontinence.

She said she was “disgusted and appalled” at her benefits being withdrawn.

“Yes I can raise my hand above my head but I am by no means ‘fit for work'”, she said.

In February, she was instructed to visit Redditch Job Centre for an interview but shortly into the meeting an assistant told her there was no point continuing it as Natalie was too unwell to work.

Following the meeting, on the advice of job centre staff Natalie reapplied for benefits with depression but recently received a letter turning her down.

Natalie, who has a five year old son named Charlie, is currently undergoing treatment and doctors believe she has developed a second pituitary gland tumour at the base of the brain after recently having one removed.

Her father Thomas, has Parkinson’s disease and dementia, and despite Natalie’s condition she tries to help mother, Cathie, care for her dad but admits the pair “help look after each other”.

Prior to her condition she worked all her life.

She said: “I was raised with good work ethics and from two weeks after leaving school held down a full time job and even attended evening college to train and become a counsellor.”

“I have ambition and can’t wait to be well enough to work but the fact is at the moment I am not capable.”

She is now considering talking her case to tribunal.

A Department for Work and Pensions (DWP) spokesman said: “The decision on whether someone is well enough to work is taken following a thorough independent assessment, including all available evidence provided from the claimant’s GP or medical specialist. Anyone who disagrees with the outcome of their assessment can appeal.”

From http://www.eveshamjournal.co.uk/news/regional/15232560.Single_mother_suffering_from_a_debilitating_rare_disease_judged__fit_to_work_/

 

Rachel, Undiagnosed Bio

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Hello, my name is Rachel, and I am 31, will be 32 in 2 weeks.

I have been suffering from this medical condition, which I believe to be Cushing’s Syndrome, Adrenal Fatigue, or Pheochromocytoma, or maybe a mixture of all 3. I have had this for around 16 years, maybe longer, as I have had the classic “buffalo hump” on the back of my neck since I was 9 years old and have always had trouble with my weight. I have been on many diets since mid-childhood.

When I was around 13, I discovered a weight loss supplement, which I diligently took and lost 20 pounds over a 2-year period. I felt the best I have ever felt my entire life. I eventually had to stop taking it, though, due to not being allowed to bring any meds or supplements to my high school. I was not totally thin, but I looked pretty good. But during that first year of high school, my insomnia returned, and the rest of my symptoms started to emerge.

Autumn 1999 (when I was 14): I started getting daily headaches. Sometimes, they were minor, where I could ignore them, and other times they were so debilitating that I had to miss school. Because I wasn’t allowed to bring medication to school, I had to take Ibuprofen every morning as a preventative.

Autumn 2000: I suddenly gained 20 pounds in one month without changing anything in my diet. The fat was especially much around my face, neck, and torso.

Spring 2001: I developed fatigue, loss of concentration or “spacey-ness”, and being easily physically and mentally drained. I lost contact with many of my neighborhood friends, since I avoided lengthy times spent with them, and sometimes wouldn’t be when them at all because of not having enough energy.

Autumn 2001: Thinking I had hypothyroidism, I had my first doctor’s appointment over these symptoms, especially of the weight gain that was getting worse. Nothing showed up in tests, and the doctor wanted to put me on a 900 calorie diet. I never went back.

Summer 2002: My menstrual cycles became irregular, skipping sometimes 2 or 3 months at a time. Finally, they stopped altogether. I also gained another 20 pounds that upcoming school semester (16 weeks).

Summer 2003: I went to another doctor. She put me on birth control pills to get my menstrual cycles back. It helped a little, but they were very light with severe cramping. I gained an additional 20 pounds from the birth control pills and did not feel good. Once I got off of them, my menstruation stopped again, and I never lost those 20 pounds.

Autumn 2003: I went to another doctor from the University of Chicago. He tested various hormones and found that my androgen levels (mainly testosterone) were so high that it was off the charts. He thought that I might have Polycystic Ovarian Syndrome, so he entered me in several studies he was conducting for people with PCOS. I was given several test medications and had more tests done testing insulin resistance, glucose tolerance, and other things. Nothing came up positive. During that time, I also had an ultrasound done on my ovaries to check for cysts. Nothing showed up. After other tests were done, he concluded that I did not have PCOS, and that I might actually have Cushing’s Syndrome. I couldn’t go back to him, though, as his regular appointments without the studies were really costly. This whole time of the studies lasted till summer of 2004.

I also gained an additional 30 pounds during this time.

>My symptoms of fatigue and loss of concentration continued to worsen, so I had to become a part time student to avoid exhaustion with classes. I felt my worst usually starting around 1 or 2pm, and lasting till around 5pm.

Summer 2005: Diarrhea started abruptly and has been continuing ever since. A year later, I had discovered that caffeine could cause it, so I got off of all caffeine, which alleviated it for a few months. However, it returned shortly after, blossoming into 3 different kinds and becoming worse and more frequent over the years. I used to have it only at night, but now, I have it in the morning as well, and some at night, and sometimes some in the afternoon. I can have even 5 or more bouts of it a day, which makes it difficult for me in any public place. It slows me down in the mornings (as I sometimes have to spend an hour in the restroom) and often makes me late for things.

2006-2010: I have gone to many doctors over this time, each one testing my cortisol, TSH, T3 and T4, testosterone, DHEA, progesterone, and insulin levels, and each one coming up with nothing abnormal except high testosterone.

Spring 2009: I developed a candida skin infection that has been reoccurring since then. Antifungals do not take it away, only antibiotic ointments. However, even the antibiotic ointments do not take it completely away, as it keeps reoccurring and showing discoloration in spots where it had been previously.

Spring 2010: Episodes of light-headedness, shortness of breath, and rapid heart rate started appearing, ranging anywhere from 5 minutes to an hour in duration. They would come completely at random, sometimes 3 or more times a week, and sometimes not for several months.

2011: I developed slow motility, where it takes hours for my meals to digest. This made it hard for me to get to bed at a normal bedtime like 10pm, since I couldn’t lie down without getting horribly nauseous. This also affected my diarrhea, making it where I have to push to make it come out, since my intestines do not contract much to squeeze it out or they contract very slowly.

Summer and Autumn 2011: I went to 2 doctors in New York who also tested my cortisol levels and catecholamine levels to test for pheocromocytoma, which all came out normal. I also had an MRI done on my brain to check for growths on my pituitary gland. Nothing showed up with that, either. I also went to Mayo Clinic in Rochester, MN. My results in those tests also were all normal, and no diagnosis was made.

Spring 2012: My menstruation returned to regular monthly cycles.

Winter/Spring 2013: I suddenly started to become sensitive to cold, so winter became almost unbearable for me. This cold sensitivity has been increasing every year thereafter. Even temperatures in the 60-degree Fahrenheit range make me feel chilled and forced me to dress in double and triple layers of clothing.

Also, around this time, my fatigue reached a new level of severity, making my “dead” time duration between 12pm-6pm.

Spring 2014: My menstrual cycles suddenly changed again, where I had constant menstruation for over 3 months.

2015: My fatigue, again, worsened, making me so tired that I could fall asleep throughout the afternoon and most of the evening. This extreme tiredness would come especially shortly after I would eat a meal, particularly in the midday. This made studying for my classes very difficult and time consuming, since I was so slow.

I also started to notice I could feel a small lump on my upper left side, just below my ribcage. This lump started out the size of a golf ball and has increased to the size of a baseball. It makes me feel nauseous if it’s pressed on with little pressure and hurts when it’s pressed on hard.

My menstrual cycles became irregular again and have stayed that way ever since.

Spring 2016: After getting nowhere with endocrinologists, I went to see a gastroenterologist because of my diarrhea and lump. A CAT scan was done of my abdominal area showing nothing abnormal. In fact, the space where the lump should be in the pictures just shows empty blackness, no organs or growths whatsoever.

Over the course of these years, I have done a lot of my own research and have noticed that my symptoms all match 3 possible conditions: Cushing’s Syndrome, Adrenal Fatigue, and Pheocromocytoma. I am wondering if all these three conditions can coexist in the same body. I know that Cushing’s results from a growth on either the pituitary gland or the adrenal cortex of the adrenal gland, making the adrenal gland produce too much cortisol.

I also know that pheocromocytoma results from a growth on the medulla of the adrenal gland, producing high levels of catecholamines, which, for some reason, does not always show up in a blood test. And I know that adrenal fatigue results when the adrenal glands become exhausted from constantly producing high levels of cortisol during stress that lasts over a long period of time, so they don’t produce enough. So could it be that I have a growth on one of my adrenal glands that extends from the adrenal cortex into the adrenal medulla, causing the symptoms of Cushing’s and pheocromocytoma, while my other adrenal gland has adrenal fatigue? That would make sense why nothing shows up on the tests, because one adrenal gland is producing too much cortisol, and the other is not producing enough. So the two would cancel each other out, yet I could still experience symptoms.

I have gone to 12 doctors over these 16 years, and not a one has ever come up with a diagnosis or even cared about investigating the cause. They resist doing further testing and evaluating, because nothing shows up in the initial blood and urine tests. They don’t even believe me and think that it must be depression or that I am just making it all up. I have been criticized, rebuked, and laughed at by them. I even had a doctor chuckle as he told me, “You better get your periods back or you could get cancer of the uterus”. I have run out of doctors and have basically given up hope.

So where I am right now, spring 2017: My symptoms have gotten so bad that I am almost debilitated. Every day, I always wake up feeling just as tired as I did the night before. No matter how much sleep I get, I do not feel rejuvenated whatsoever. This makes it impossible for me to get up before noon, so often times, I am just eating breakfast/lunch around 3 or 4 o’clock in the afternoon. I have no energy all day long, and the fatigue makes me unable to do much of anything during the times I am awake. Most of the time, I feel like I am moving in slow motion, because time seems to pass by so quickly. I have to take frequent breaks from mental or physical tasks just to regain some strength and energy. I try to avoid social events, as I don’t have the energy to be with people and get easily stressed and drained. So I am alone much of the time. I can only take one class per semester in college now, as I don’t have enough energy to study.

I have acquired muscle weakness in my arms, hands and legs, that makes it incredibly difficult, and sometimes painful, to go up and down stairs, along with doing the process of going from sitting to standing or vise-versa. I appear as “lazy” since I can’t even get up from my chair to get something that is just a few feet away from me. The muscle weakness in my arms and hands makes it difficult to even do handwriting.

My memory if often foggy, also making studying difficult, as I can’t remember what I am reading. Many times, if a friend asks me what I have done during the last few days, I can’t remember. I can experience a fun event, and I still will forget and have to force myself to think about what it was. I feel like in a fog all day.

Almost every day, I will wake up with a headache, or I will get one over the course of the day. I have to take painkillers, such as Alleve, everyday just to keep my headaches under control. And sometimes, my headaches are so bad that they debilitate me. With those kinds of headaches, taking up to 12 Alleve in one day will not take them away.

Painful diarrhea keeps me in the restroom sometimes up to an hour or longer with each bout. I have to eat my evening meal earlier and earlier, so I don’t have to sit up late waiting for it to digest. I even have to keep from lying down for over an hour after drinking just water.

My immune system is also impaired, so I can get sick easily and have reoccurring candida infections. Colds and the flu hit me hard, often debilitating me for weeks. I take vitamin D3 to enhance my immune system to not get sick as often, since I have to ride the train and bus going to and from school. I have also acquired more allergies over these years. My nose has gotten really sensitive to perfumes and fragrances. I never used to be allergic to animals, but now, I can’t even go into a house that has pets without getting a bad sore throat and runny nose for 3 days after. And in general, I have noticed my lungs and nasal passages are producing more mucous, so I have to keep coughing and blowing my nose frequently, or I get a sore throat.

My menstrual cycles are very light and almost non-existent. I haven’t had one since January, and it’s now the beginning of April.

I am now 100 pounds overweight and can’t lose it, even with the same weight loss supplement I took before my first year of high school. The majority of the fat is around my face, neck, and torso, with some now accumulating on my upper arms and upper legs and pale purple stretch marks on my belly and upper arms. I have the typical fat distribution and appearance of Cushing’s Syndrome.

I still get the episodes where I experience a rapid heart rate, light-headedness, and shortness of breath. During those times, I have to breathe harder and just stop whatever I am doing. I have even almost felt like passing out at times.

I will be graduating in 4 weeks and am very afraid, as I don’t know how I will handle the stress and demands of a full time job, especially if I have to interact with people. I have very few friends, and half of my own family doesn’t believe me when I talk about my condition. I feel ugly and boring and have become very depressed. Is there ANYONE IN THE WORLD who will help me??? I hope someone (like a doctor perhaps) will read this bio of mine, and have compassion in their heart and be eager to help me.

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Meme’s Brother-in-Law, Steroid-Induced Bio

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golden-oldie

 

 

Help!! We get no answers but we have questions! My brother-in-law is 52 yrs old and has had a lifetime of prednisone use due to chronic asthma.

Last spring he got a cold that completely debilitated him to the point where the most he could do was take a shower and sleep. This went on for months. In and out of doctors’ offices looking for answers. Getting none. Lots and lots of tests.

Around September he started regaining some strength and was able to return to work part time.

By October, he had another cold and everything quickly went down hill. Severe fatigue, lightheadedness, muscle weakness etc. etc.

After seeing pulmonary specialists and every other doctor we could, thanks to our HMO, we were told steroid myopathy, Cushing’s Syndrome, cardiac myopathy and the obvious shut down of the adrenal glands due to this.

Now we see why there is no energy!! But what do we do? We live in the Midwest but would go anywhere for treatment or help.

The main question is how does a person get enough strength back to enjoy and have some quality of life?? At this point he is on a maintenance dose of 10mg of prednisone per day so he can live. Should an endocrinologist be checking him?? Any suggestions or comments are greatly appreciated!!! Thank you.

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Elizabeth, Pituitary/Adrenal Bio

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golden-oldie

 

Originally posted September 24, 2008

Hi my name is Elizabeth (Liz or Lisa). I am a 32 year old who has possible cushings. In October of 2005 I was diagnosised with an adrenal tumor on my left adrenal gland. At the time I contacted my PCP to get a referral to an Endo doc. I was then seen by an endo doc who had ran some tests to meassure my cortisol levels which, of course, came back normal.

I then continued to gain more and more weight and was getting more and more stretch marks as well as facial hair. I have suffered from headaches for years and had begun to suffer from extreme fatigue and body/limb weakness.

This time last year my mom was reading a Weight Watchers magazine and read a story from a lady that had the same signs. She thought that she was gaining weight and getting stretch marks due to a pregnancy but had a hard time believing thats all it was. So this lady went to a specialist and they tested her for cushings and ended up finding out that’s what she had and of course the tumor. They performed the surgery to remove her gland and she immediately lost 20 lbs and felt so much better. So my mom and I began to research this disease online and discovered that this sounded exactly what I have and was going through.

I then took this information to my endo who began testing me more and more. We had finally found an elevated reading of cortisol from my urine in December 2007. He then send me for a MRI to rule out the pituitary tumor in January 2008. With surprise to everyone, I ended up having a pituitary tumor as well.

At this time, my doc decided to send me to the Mayo Clinic in Minnesota to see a Cushings specialist. With a lot of time and money, the doc at the Mayo advised that he was unable to diagnosis cushings based off of one elevated reading. None of the tests that were performed at the mayo clinic came back elevated. I then went home in tears and disappointment. I have been continuing to go through 24 hour urine testing and pretty much everything else and no luck but just 1 more elevated reading.

This has been one of the hardest things that I have ever gone through in my life. I used to weigh 125-135 lbs and had a beautiful body and such confidence in myself. Now, I am almost 100 lbs more and have a body that is a cross between a zebra and railroad tracks with facial hair like a man. My mental health has gone completely down the drain and I am on the verge of tears everyday all day long. My dating life has gone from having someone in my life for years to nothing due to my moods and self confidence. There are times that I feel like I am going to loose it. Like I just can’t take this any more. I try my very best to watch my diet and exercise and I still gain the weight.

My endo doc here at home just this week consulted with the doc at the mayo and they just can’t figure out why the readings aren’t coming back elevated. They definately say that my physical appearance is cushings. So we just continue to test and test until, hopefully, that day comes to end this horrible disease.

It has been so great to know that they are other people out there feeling and going through the same things as I am. It does help to know that I’m not the only one going crazy over this. With luck and prayers, hopefully the next time i am writing is to say that I have to go ahead for surgery. For everyone out there, try to keep positive thoughts!

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Jules, Pituitary Bio

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golden-oldie

 

Originally from September 25, 2008

My journey with Cushing’s started six years ago at the age of ten. It started when I developed a duodenal ulcer. It was unbearably painful (this is coming from someone with a very high pain tolerance) and I have extreme stomach problems for at least 4 years following. I went to a gastroenterologist and got it somewhat under control.

This went on until the age of almost 15 when I just couldn’t take it anymore. By this time I had struggled with a very mentally draining family issue that had occurred. I became very irritable and depressed and just assumed it was from this hard period of my life.

I was shocked one day to see purple stretch marks running down my abdomen. I had been rapidly gaining weight and associated them with that. Always being an average size girl this weight gain both freaked me out and made me even more depressed. I was very irritable and unhappy with myself. I don’t overeat and am pretty active being an equestrian rider and working out at least twice a week. It made no sense. I knew something was wrong but had no idea what. My face has always been round but lately it was larger and red.

I decided to go to a new gastro. and was suprised when he felt the base of my neck and told me my thyroid was very enlarged. He quickly referred me to an endocrinologist who diagnosed me with hypothyroidism. I though I’d finally found the answer and expected my new medication to solve my problems.

To my dismay the symptoms only got worse. I was also now noticing fatigue and weakness.I gained 25 pounds that year when I should have been losing it after starting the medication. I was starting to get thirsty and drink all the time. I urinated frequently and sometimes had leakage. My periods from day one were very intense and I had horrible PMS but now they were becoming very weird and I am starting to lose them. I have sweet cravings several times a day and if I miss a meal by an hour I get an intense headache sometimes accompanied be nausea. It is now difficult for me to concentrate on schoolwork and I am extremely fatigued. I can’t bend my joints for long before they tighten and ache. I can no longer bend over without having bad pains when I straighten up again. Some nights I have an awful time trying to sleep and I feel as if life is growing harder and harder by the day.

After dealing with this endocrinologist for a year and having him ignore my other symptoms by telling me that my thyroid levels were normal I couldn’t take it anymore. I knew I was very sick deep inside.

I scheduled an appointment with my now lifesaver. My first appointment with Dr.Borg was the best day of my life. He did a full body exam (which the other doctor hadn’t) and immediately told me that I looked like a person with Cushing’s disease. He was completely shocked when I told him that the other doctor hadn’t tested or looked at anything other than my thyroid.

Advice to anyone who might have this disease is to insist that your endocrinologist runs as many blood tests possible and make sure they do a physical exam. This is what I think “saved my life”. I was told by my new doctor that I would have developed type 1 diabetes within 3 years.

After the tests showed that my levels were way off I had an MRI which confirmed a tumor. I should now say that the best day of my life was when he told me that the MRI showed that I had a tumor and this was very fixable. I was so relieved. Now I am seeing a neurosurgeon and am awaiting news of when my surgery is. What I would like to say to anyone struggling with this disease is listen to yourself over anyone else. I had countless doctors tell me that I needed to eat less and work out more.

Deep down inside I knew there was a reason for my weight gain and for the hurt I lived with everyday. I knew that life was better than this. I pushed my parents to bring me to as many doctors as it took until we found the one who could find the culprit. You are the only one who knows how you are really feeling. I know it’s hard but hang in there and know that there is a light at the end of that dark tunnel.

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Melissa (SweetMelisa), Adrenal Bio

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adrenal-glands

Hello everyone,

First, thank you all for sharing your stories. While I am not thrilled to me joining the group, it is nice not feeling alone in this journey anymore. My thoughts and prayers to all of you who have traveled this path and continue to do so.

My case is rather complex. It seems I have a myriad of problems going on and I am still navigating toward a diagnosis. I am a 41 year old who is 5’5 and last I checked, idling at 184 lbs despite a daily calorie intake of around 1200.

In brief, I have battled weight issues since puberty despite being a relatively healthy eater and involved in sports until I was 16. Other than weight issues I have had a relatively healthy life until I decided to start having kids in 2004 (age 28).

First pregnancy: diagnosed with “borderline” gestational diabetes. Monitored with finger sticks before meals and controlled by diet. Despite healthy eating, I gained over 60lbs with my first pregnancy and gave birth to a nearly 10 lb baby via c-section. My cycles became horrible thereafter.

Second pregnancy: experienced secondary infertility issues (it took us 13 months to conceive). I was diagnosed with low Progesterone and put on a supplement into the beginning of my second trimester. Delivered a healthy baby, nearly 9lbs, via c-section. I gained 35-40lbs with that pregnancy.

About a year or a little less after my second pregnancy (around 2010) I was diagnosed with hypertension after my readings stayed in the 140-150s/80s-mid 90s. I was placed on a hypertension medication but I discontinued it after about 6 months because of the development of a chronic cough (and thinking I could change my lifestyle a bit and the BP issue would follow suit). I was also experiencing pretty bad fluid retention in my feet and ankles but nothing was done about that.

During 2011 to the end of 2014 I lost my health insurance and therefore did not seek any medical care. In 2015 I regained it and changed PCPs to an internist since I was approaching 40 and knew the next phase of life could bring on major health changes. Boy did I plan that right.

Feb 2015 I had a routine workup done with my new doctor. The labs showed elevated triglycerides, a BP of 182/128 (yikes), continued fluid retention (so bad at times I can’t fit into anything other than slide on shoes) and a very low Vitamin D level. My new doctor placed my on a BP med with a diuretic, ordered me to go on the Atkins diet, watch my sodium intake and to take 5000mg of Vitamin D a day. Then follow up in 6 months.

At the 6 month follow up, my triglycerides barely decreased, instead of losing weight on Atkins, I gained 6 lbs and despite the diuretic, I was still having fluid retention (though not consistent). (They did not believe that I had changed my eating habits by the way). I was told I needed to really focus on eating better and I was scheduled for a 3 month follow up and if I didn’t lose weight then we would have to have a more serious talk (I was 172lbs at my first appointment). I missed the 3 month follow up because I am also a caregiver to a chronically ill parent.

Fast forward to March 2016 (late March), I developed an upper respiratory infection. I typically get them every April but this one was very different. The fatigue was debilitating. It hit me like a ton of bricks at the checkout counter of a drug store and it took every single remaining ounce of energy for me to walk to my car, a mere 100′ away. I was diagnosed as having a bad viral bug but………..they also found a new heart murmur and I had informed them about a couple episodes of shortness of breath and waking up with a racing heartbeat (110 beats per minute). They put me on a steroid and had me follow up in a week or so.

April 2016 I followed up and while there, pointed out a palpable mass just above my navel and slightly to the right. I told them about a weird abdominal “catching” type pain I had been experiencing since last Fall and maybe it was adhesions from c-sections or a hernia. And so began the unfolding of many many tests and findings ever since……….

During the journey to figure out the hernia (which was finally picked up by a 2nd surgeon at a teaching hospital) I began experiencing relentless right upper quadrant pain which led to a lot more tests, several specialists (a GI doc, 2 surgeons, 1 OB Nurse Practitioner, 1 OBGYN and my PCP).

Findings:
Gallbladder normal on ultrasound, normal on CT with contrast and normal on MRI but HIDA Scan shows an ejection fraction rate of 18% (Cholecystectomy recommended). The 24/7 pain has subsided but I do have pain daily though oddly enough, it is triggered by not eating as well as eating (and more often by healthy food than fatty ones).

CT with contrast showed bilateral adrenal adenomas. An in phase/outphase MRI was ordered. MRI result: 2.6cm adenoma on right adrenal, 1.7cm adenoma on left adrenal 3 lesions (cystic type) on my liver. (I asked my PCP if I should be concerned about these, He said no “They’re incidentalomas”. I don’t think they have anything to do with what is going on with you.” I told him I had read the Endocrinology Society recommended a workup to see if they are functioning or nonfunctioning and that I was concerned about my weight gain (difficulty losing it over the years), increasingly bad blood pressure and fluid retention issues. He said he would to the 1mg dexamethasone suppression test but to wait to have it done after I had other workups done). I could tell he was only ordering the test to appease me. More on that in a minute.

GI specialist did an endoscopy and colonoscopy: Endo fine, colonoscopy discovered 3 polyps (2 benign, 1 precancerous adenomatous) and a diagnosis of mild diverticulosis

OB visit led to 3 vaginal ultrasounds and the discovery and tracking of a suspicious, large ovarian cyst (turned out to be hemorrhagic) and a thickened endometrium. Endometrial biopsy done – negative for hyperplasia and cancer.

After all of my other testing sessions slowed down, I went in to have the 1mg dexamethasone suppression test done (July). My AM cortisol came back with a result of 5.9 (my PCP is calling this borderline). He ordered the 2 day test per endo protocol…..the AM cortisol came back 7.1 and my ACTH came back undetectable. I sent him a journal from the Endo Society with a bunch of hi-lighting and that I wondered if we needed to check for Aldosterone issues because of the fluid retention. He ordered an Aldosterone/Renin Ratio and 1 other lab test. Thursday will be 2 weeks and I have still not received the results. I do have an appointment to meet with him next week for him to “discuss” all of these findings. I am suspecting at this point, that I have sub-clinical cushings or something of that nature.

I have been delaying my cholecystectomy and hernia repair surgery pending these tests. Now I am concerned that I will be adding at least, a unilateral adrenalectomy to the list, if not bilateral which frankly, scares me quite a bit. I will be requesting a referral to Johns Hopkins or Duke to see an Endocrinologist. I asked my PCP early on when the adrenal adenomas were found if I should be referred to one and he said he didn’t think it was necessary. I am losing quick confidence in my PCP though he is well respected by other patients that I know.

Anyway, thus is my story…….and I know more is to come.

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Heather P (Heather), Undiagnosed Bio

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undiagnosed 5

 

This is about my husband…2010 diagnosed with rheumatoid arthritis (one day he was fine, the next day he was in agony type onset). Was placed on methotraxate, prednisone, humera, actemra, etc. for the next 4 or 5 years. None of the bilogics worked for more than a month. Pred and pain meds became a mainstay for about 5 years. I started to question the accuracy of the diagnosis and was patted on the head and basically told to forget it and go my merry way and accept it. We were always told the bloodwork “was fine. no issues with the exception that when Neal hurt, his inflammatory blood factors were low..which was odd but it is his body”. It was left at that. We basically gave up the Rheumatologist in 2015 as it was getting us nowhere and nothing was changing. Something was still wrong.

Late 2015, his weight gain went crazy. He developed moon face, the traditional hump on the back of his neck, huge adbdomen with tons of stretch marks everywhere, no energy, listlessness, severe pitted edema, paper thin skin, spots all over his legs, rash on his chest, pressure on his chest and lungs when laying down, sleeping all of the time (as in 2 seconds after he hit is recliner), sleeping solely in the recliner, lower extremety severe weakness, nausea, etc. This led to congestive heart failure in Jan 2016 due to the extreme fluid retention. Placed on lasix, indomethacin, blood pressure meds. Cleared by heart doc two weeks later to return to work.

Still no results…..still spiraling downhill. March 2016 Get steroid injection in the knees as he cannot walk due to the weakness, swelling and pain. Vision issues are now added to the list of continuing issues.

June 7, 2016. Go to another doctor out of state and get more bloodwork done as we cannot take it anymore. They take more blood. Doc does comment on his paper thin skin and mentions that is usually from steriod use. Neal passes out and has to be taken out of the office in a wheel chair as he cannot walk due to the extreme weakness and pain. Increase lasix to 2 a day and get prednisone.

I have finally had enough. I cannot stand seeing my once vibrant active husband just laying there…just existing….just barely…. I make a comprehensive list of all of his symptoms, make a graph of his blood work results from 2010 to present…what I found was astonishing…his results were NOT ok. I took him to the local doctor and pleaded and begged for him to figure out what is wrong with my husband. I initially go thte ole “I don’t want to step on anyone’s toes” etc. as we had just gone to the new rheum. doc a week ago. He ordered a new echocardiogram and it was clear. Added new drug. Neal had an allergic reaction and was put on high dose (50 mg daily) of prednisone combined with zantac and zyrtec for 3 days.

A week later, his bloodwork came back…gout, hypothyroid (based on symptoms), severe internal infection. Add more meds.

Go to eye doc and get the diagnosis of cateracts in both eyes. Doc felt it was due to prednisone due to the rapid onset. Surgery scheduled for next week.

In the meantime, Neal has gone even more downhill….now he feels like he periodically fractures a rib, a finger, etc. Even more stretch marks are present. He is listless and cannot function. He cannot walk. Add decreased urine output even on the lasix). He just lays there stuck in a shell. He has missed so much work in the past 2 weeks. He lives as one would in a nursing home…I take care of his daily needs. He cannot.

I go back to doing my research online. Cushings Syndrome pops up…OMG….Between all of the biologics, the up and down on the prednisone, zyrtec, steroid injections , etc. has sent him into the major downward spiral that he is experiencing…..Steroid induced Cushings along with hypothyroidism (might even be hashimoto’s..too soon to tell). We came to this conclusion at 2 am this morning. To further prove this, he took an additional 10 mg of prednisone immediately. I know…he refused to go to the er…he wanted to prove it one way or the other. (I did tell him that I was gonna invoke my medical poiwer of attorney and have him taken out by ambulance on tuesday if not sooner if this didn’t have some impact). Well…he can WALK this morning. He actually went to the bathroom to use the toilet….THAT is a huge deal to us. He is in pain but he can MOVE!!!! He went to work this afternoon as well. He has to have his cateract surgery so he can see to work (we will lose our home…company house…and everything else if this is not done asap). That is his priority. Once the surgery is done, we will be headed back to Nebraska to approach the doctor there about our findings relating to Cushings Syndrome.

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