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Rebecca, Undiagnosed Bio

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golden-oldie

 

Originally from Friday, October 3, 2008

I am 24 years old.

Last year my life changed. In less than 3 months I gained 39 kg or 85.8 pounds in less than 4 months. I am constantly tired no matter how much I sleep. I suffer on/off insomnia, my skin is fragile and thin, my hair on my head is falling out in droves and is not growing fast at all. I suffer severe migranes, have horrible stretch marks across my body, have lost my shape, have a swollen (moonface?) face, have extra hair growth on the body and I am bruising easily.

I have little concentration, am very irratible and have noticed personality changes. I get heatrashes in the middle of winter across my face, yet my hands will be frozen. My bones ache and I have lost so much muscle strength. I am so depressed, have a low libido, have no period and lately I am having problems with my eyes.

My normal doctor knows there is something wrong however none of the endo’s I have seen do anything. One told me it was all from depression. Another told me I stuff my face too much. This especially hurt as I was living on 2400 Kilojoules a day, barely surviving, exercising like crazy and still putting on a kilo a week.

My blood tests show my cortisol is high, my platlet level is getting higher and higher, I am constantly showing signs of infections/inflammation, I have hypothyroidism.

In Australia, the only way to diagnose cushings is with a 24hr urine test, yet mine was only “moderately” high. It is affecting everything in my life and I just want to know what it is. One of the hardest parts is the not knowing.

Everytime I eat, people stare and you can tell they think I’m gross. People make nasty comments about my weight and say I should exercise. I don’t do much anymore because I just can’t manage it, but even when I did, nothing positive would happen. Its affecting my friendships and relationships. I feel like such a winge, but I can’t help how hopeless it feels.

I am so grateful for this, for being able to vent with others that actually understand what its like.

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Ryley (Sunshine), Possible Adrenal Bio

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golden-oldie

 

A Golden Oldie originally from Monday, November 17, 2008

I am currently in diagnosis – Finally got fed up and met with an endo. who is wonderful – she let it slip that she thinks that my problems are not only associated with my thyroid (hypo) but that I have an adrenal problem. She set up a myriad of tests which I have subsequently completed (in a record two days) and have done what one should NEVER do – go look up symptoms on line.

I have ALL of the sympoms for a Cushie – from the over emotional bit to the hump – Just Lovely! I just wanted to drop a note as I am feeling very overwhelmed by all of this. I realize that I have not been diagnosed, am only at the testing phase and should just calm down and be rational but it is harder than it appears.

I am alone with this and it is freaking me out. My family is in another state, and, when I talk to them I feel I need to put on a brave face, I always have when major issues occur, don’t know why I do, I just do. I know that if I asked a family member to come to me they would, no questions asked but then I know they would just be watching me like a hawk the whole time for G-d knows what to happen.

All of your posts have been extremely helpful to me and are helping me to bolster my spirits. It is heartening to know that I am not a crazy person and that there are support systems out there for us. I will write again when I get a diagnosis – Hoping for the best!!
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In Memory of Jenni Moore ~ January 25, 2016

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in-memory

 

A young woman struggling with ill health after developing a tumour died from an overdose after “illicit insulin” was brought into the Norfolk and Norwich University Hospital last year, an inquest heard.

Jenni Moore passed away at the intensive therapy unit on January 25, more than two weeks after sustaining brain damage while an inpatient at the hospital.

The 26-year-old from Halesworth had been admitted in December with complications from two unsuccessful operations to remove a tumour of the pituitary gland.

A Type 2 diabetic since 2002, Miss Moore suffered from emotionally unstable personality disorder and an abusive relationship, before a diagnosis of Cushing’s disease as a result of the tumour.

Consultant physician at NNUH Dr Franscesca Swords said Miss Moore had been exhibiting “alarming symptoms”.

“Cushing’s can cause Type 2 diabetes and needs much higher levels of insulin for it to work,” she told Norfolk Coroner’s Court.

“She was having incredibly low sugars, which is consistent with too much insulin. We had been reducing her dose steadily.

“We were giving her a fraction of the insulin she had been taking but her blood sugar was still low. Eventually the realisation came to ward staff there was something else at play here.”

Staff then began to discover insulin pens hidden in her room. During an investigation Norfolk Police interviewed Miss Moore’s partner Derek Soanes, who admitted he had brought her insulin pens at her request. No further action was taken.

Sarah Kennard, a lead health officer with Norfolk and Suffolk NHS Foundation Trust, said in a statement that during a risk assessment in March 2014 Miss Moore said she “thought she was insulin resistant” as a result of her Cushing’s.

Assistant coroner for Norfolk Nicholas Holroyd recorded a narrative verdict.

“Jenni suffered significant and unhappy health conditions for a number of years,” he said. “Cushing’s exacerbates the diabetic condition to make the patient yet more vulnerable to sugar or hypoglycemia so higher doses of insulin are needed to correct the situation, which made her resistant in a sense.

“There has been evidence insulin was being brought to her in the hospital she should not have had. I do not believe she intended to take her own life. Nothing had occurred to drive her to an extreme act.”

After the inquest Miss Moore’s brother Joe said: “I loved my sister and so did the rest of my family, and we miss her every day.”

From http://www.edp24.co.uk/news/diabetic_died_after_overdose_from_illicit_insulin_brought_into_norfolk_and_norwich_university_hospital_1_4614300

Crystal T, Undiagnosed Bio

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undiagnosed4

Hi everyone,

I am a 36 year old female who’s been on a two and half years quest for a diagnose. I have all l symptoms of Cushing’s. My Endocrinologist has checked my Adrenal glands, Cortisol, hormones and all normal.

I did have high Norepinephrine levels I don’t understand but rest normal.

I have this crazy acne I believe is excessive Androgen production. Water beads off my skin. My deodorant is extremely hard to wash off because it seems to stay in my pores. My skin is very sticky. Yet I am undiagnosed . 4 doctors from my primary to specialist believe it’s Cushings of some form.

I have a lump on outer Mediastinum area confirmed by my primary doctor and a chest Xray order to get next week. I’ve read a lot about Thymic Carcinoma, Thymoma and other forms of benign to malignant tumors that can cause all my symptoms.

Can anyone help me with advice or share their story please. This is extremely strange and confusing to me.

Update 7/13/16:

I also read about Thymoma and Thymic Carcinoma, certainly lung carcinomas can cause Cushing’s Syndrome. I have all symptoms on Androgen excessive production. Some tumors can be predominately other sex hormone producing.

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Kali, Undiagnosed Bio

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undiagnosed3

 

Hi Everyone,

My name is Kali, I’m 20 years old and I’ve been on this journey for a year and a half now. Before this all started I was petite 5’3″ and 123lbs at my heaviest, I was incredibly active, I played multiple sports including soccer, ringette and swimming and I worked out 4-6 times a week. I stumbled across this wonderful website last night after becoming so frustrated with the way I have been treated and bounced around from doctor to doctor. Honestly reading some of your stories is like reading my own. I’m hoping someone will be able to reach out and send some advice my way.

This all started last year when I noticed all of a sudden my regular work out routine had become extremely difficult my legs fatigued quickly and my heart started racing just walking. I went to my GP who said I was having panic attacks while walking around. I of course said this wasn’t possible and left discouraged. 3 days later I ended up in the ER due to a racing heart rate at over 180bpm while lying down.

Now fast forward 6 months, 7 rounds of blood work and 5 appointments with 2 cardiologists and everything came back normal. I was fed up. I now couldn’t even walk up a set of stairs without becoming fatigued and working out was no longer in the picture at all. I even found getting out of bed in the morning difficult. The doctors all said it was in my head, it was anxiety, I needed to push through and everything would get better. Funny thing was I used exercise to deal with my anxiety for many years and I knew this wasn’t anxiety.

I honestly ended up no where and sort of gave up. Some doctors thought it was hyperthyroidism, 1 thought Wolff-Parkinsons White but everything came back normal and they all settled on a diagnoses of anxiety and I was prescribed multiple different anti-anxiety and antidepressant medications which my stubborn self refused to take. I accepted that I couldn’t work out or run or be who I used to be and I focused on school and tried yoga, light jogging and small sessions of weight lifting instead of intense gym work outs.

Now we fast forward another 2 months or so. I started craving sugary foods, I had never had a sweet tooth before I never even used to like chocolate and all of a sudden it was all I wanted. I developed a lot of back pain between my shoulder blades and I just assumed this was all because of upcoming exams, bad posture and just life. I really shouldn’t have.

4 more months go by and I went home after school finished. My mom immediately said I had gained weight. I mean I had noticed some of my clothes were tighter but I figure I just accidentally put them in the dryer. 2 weeks later. Nothing fit. I had outgrown all of my clothes in just over a month. When I stepped on the scale I thought it was broken. I had gained over 30 pounds in less than a month. 123 – 156lbs. My face was puffy and red with acne, I had a huge hump between my shoulders. My breasts doubled in size, my stomach was huge but my arms and legs were normal. I immediately went to a new doctor recommended by a friend and she agreed something wasn’t right and sent me straight out for some bloodwork. But of course…. everything came back normal. I even did a dexamethasone suppression test which too came back normal.

I have all the trademark signs of cushings syndrome. Round red face, buffalo hump, bruising easily, unexplained weight gain primarily in the face and abdomen, purple stretch marks on breasts and thighs, muscle weakness, tired all the time, heart palpitations, increased thirst and sweating. But I cannot get a positive diagnoses to save my life. I don’t know what to do. Not 1 doctor has been able to make 2 + 2 = 4 and I’m so upset. I hate looking in the mirror, I hate waking up with 0 energy and no clothes to wear everyday. I’ve seen 3 doctors, 2 cardiologists a nurse practitioner, an endocrinologist who didn’t even give me the time of day with my normal results and I’m scheduled to see an Internist in about a week. Should I just ask him to send me for an MRI? I feel like that is my only option left.

If anyone has any suggestions of what direction I should pursue that would be much appreciated. It’s hard to fight for yourself when you’re the only one on your side.

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In Memory of Kassey Whiterock, June 30, 2016

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in-memory

The information I have is very sketchy.  I’ll update when/if I can find an obituary.


kasseyKassey passed away on June 30th. Her sister said she died in her sleep.

She was in the hospital due to an adrenal crisis on June 21, 2016.

I don’t know the exact cause or if she was still in the hospital.

She had surgery April 28, 2016 for blood clots.

Kassey was only 20!

From a GoFundMe page her sister put up.

Kassey Whiterock passed away June 30th in her sleep. If you knew her, you knew allow badly she was sick and in and out of the hosipital. My mother and I are the ones arranging her funeral cost and on top of the sadness of loosing her we are not worrying about how were going to do this. The plans are for her to be cremated and taken to Arizona where we have family and reservation. If you could please find it in your heart to to donate it would be greatly appreciated and one thing my mother and I do not have to stress about in this time of grieving .

Thank you all so much.
Help spread the word!

 
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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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