Home

Lauren (Iskah), Undiagnosed Bio

Leave a comment

undiagnosed6

 

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

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

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

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

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

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

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

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

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

My Symptoms:

> Weight Gain

> Facial hair

> Irregular Periods

> High Blood Pressure (Hypertension)

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

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

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

> I recently have been struggling with depression

> Anxiety & Irritability are a constant.

> Acne

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

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | CushieWiki

AllisonChained (AllisonChained), Undiagnosed Bio

Leave a comment

undiagnosed2

I’m becoming increasingly concerned I may have Cushings and I dont know where to start.

In 2006 my health suddenly took a dive. It started with my mental health. I had severe anxiety and depression and panic symptoms. I am currently disabled due to agoraphobia. My fight or flight response was on a hair trigger. My brain would give me sudden urgent DO THIS RIGHT NOW MESSAGES, as though if I didn’t I would be in danger. But the things it was telling me to do was things like jump out of the moving car, put my hand on the stove. I was hospitalized eight times in impatient mental health. I feel like I’m on high alert all the time.

In 2007 I developed insomnia and it’s been very severe ever since. I sleep on average three to five hours a night no more than five nights a week. This past October I didn’t sleep for 9 straight days aside from two one hour naps. I have circadian rhythm disorder and when I do sleep, it’s usually between 8-11am. I also have diagnosed sleep apnea. I take Trazodone, it doesn’t help enough.

I’ve been being treated for the past four years for Fibromyalgia. I was seeing a PT for massage therapy twice a week for two years because I am in serious pain all the time. Every day I have sinus headaches and headaches behind my eyes. I have pain in my lower back/hip/IT band and then in my neck, shoulders and arms. My shoulder joints are so painful I wake up with my arms dead more often than not and I just feel incredibly weak during the day. I take 2700 mg of Gabapentin/day. I am 60.5 inches in height and weigh 297lbs but I have never had high blood pressure. I have a pendulous abdomen and keep getting yeast infections under it. I have tons of stretch marks, adult onset acne cysts/boils and mosquito bites that just wont go away. In the past year I’ve been losing my hair by the handful.

For a while I thought I might have a sex addiction because my hormones were just out of control but then my sex drive abruptly disappeared. My menstrual cycles disappeared as well. I’ve had three in the past five years. And I don’t know if it’s sleep deprivation or what but my vision has gotten so bad lately. I had mild double vision so they put prisms or something in my glasses to raise the vision in one eye slightly and lower it in the other. I used to be able to get by without them but now I feel like I cant see hardly at all without my glasses and I have trouble tolerating light.

I have an appointment with my primary on Tuesday but I frankly do not trust him and I dont know how to bring this up and request to be screened.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | CushieWiki

Julie M (Jules), Undiagnosed Bio

Leave a comment

undiagnosed4
I am here because I believe my 26 year old daughter has cushings.

She went through puberty late, just as it started she had a strange episode where she couldn’t speak, walk and was confused. I took her to the ER, the ran different tests and sent us joke with b vitamins? Since that time (11 years ago) her behaviour has been bazaar, she had put on about 6 stone.

After the birth of her child 3 years ago she had gone a lot worse. Aggressive, numbness in both legs, depression, tingling in fingers, ties and around mouth, exhaustion, insomnia and the buffallo hump which she has had for years. I thought at first she had pernicious anemia but her b12 level is ok.

The haematologist is asking out gp to run tests he mentioned cortisol, I looked it up and couldn’t believe she has exactly the same symptoms, she has constant headaches and her legs are also covered in bruises because when she does eventually go to sleep she wakes up in another part of the house due to sleep walking.

She has just been given anti depressants and sleeping tablets which she does not take. I requested her medical records and went through them found out that she had lesions in her frontal lobe 11 years ago when they ran the tests. I also discovered that she had normal low TSH and very low t4 which points to the pituitary gland

Some days she feels ‘ok’ which is very rare. Most of the time she is suicidal and stressed. I’m waiting for her to be called for her cortisol tests, I just hope they are done at a time that she is going through her cycle.

Contact Jules

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | CushieWiki

Trish G (Trishg), Undiagnosed Bio

Leave a comment

question

 

I have hypothyroidism and recently undergoing tests for Cushings disease.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | CushieWiki

ghadeer (gogo), Undiagnosed Bio

2 Comments

undiagnosed3
i have all the symptoms of cushing disease or syndrome ( weakness in the muscles and extremely painful joints , got really fat though i don’t really eat , got a moon face really big stomach and the hump on my back , my reaction to the smallest kind of stress is extremely weird not to mention the truly stressful times , depression even though iam not sure why and all the other symbtoms ) .

but in my two first 24 urine tests the result came back in range which was over half a year ago . in the last one a month ago the cortisol came back low and when i did the acth stimulation test the cortisol in the blood before the acth came high (28) after half an hour 31 hour after an hour it was 44 , i don’t really understand ???

can anyone help .

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | CushieWiki

In Memory: Kandace Bankston ‘Kandy’ Kline, September 9, 2007

Leave a comment

in-memory

Kandy’s Story…

Hi, I am a 39 year old woman. I have a putitory tumor for the last fourteen years. the tumor has kiilled my putitory gland. I no longer produce any hormones. I have been on steroids for over fourteeen years and now my organs are getting damage from the steroids. The doctor say I will die if I take them I will die without them. Everytime they try to lower my steroids I catch a severe infection. I usually hospitalized every three or four months because my body won’t fight the infection so They put me in give me iv steroids and antibiotics.

I have gone down hill so bad in the last two years I can no longer work or even clean my house the doctor wants me to limit my walking to two hundred feet that is impossiable to do with children. this disease is so frustrating as no one understand what you or going though. My husband has done a lot of research on it and he a wonderful support system. I had a very hard time finding a doctor that can help me. I was hoping I could find someone to talk too that is going though the same thing.

I live in constant pain and now the depression is so bad. I try so hard to be upbeat for my family but it is a efffort to get out of bed. I am thinking about going to Nashville clinc or maybe the mayo clinc. If anyone knows about these clincs please email me K-K_Kline@hotmail.com I would very thankful for any suggestions.

Kandy passed away September 9, 2007

Kandy Klein long-time member of the message boards passed away September 9, 2007.

Information about services and donation information.

rokchix86 (rokchix86), Undiagnosed Bio

1 Comment

undiagnosed3

 

So, I’m in the process of being tested for Cushings. I have to have an MRI and CT scan pending bloodwork results for the contrast dye. My endocrinologist said I keep failing my cortisol tests. In other words something is always elevated.

For me my journey began a few years back when I was working out like crazy doing cross training and kickboxing 4 days a week and bike riding and taking long walks, I was also dieting. I kept gaining weight. I started needing maternity clothes. I had the hump already for a few years but was previously able to lose weight.

I assumed oin was menopause but nothing I did worked. The Drs did bloodwork which was all fine. I started having hot flashes do they put me on HRT which actually caused me to drop 5 lbs. Now I know something is off.

It took my BP shooting up suddenly along with my A1C reaching prediabetic range for the Drs to believe there really was something going on.

So here I am, I started my testing in June and now it’s Sept. Still no official diagnosis. I’m very tired and depressed. I don’t go out because I don’t want to see anyone. I can only wear stretchy pants and have a hard time finding long enough shirts.

I don’t recognize myself anymore. *sigh*

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

In Memory: Janice, Tuesday, September 4, 2001

Leave a comment

in-memory

Tuesday, September 4, 2001

Double click to see these ribbons
used in Janice’s memory.

On the message boards, Lorrie wrote: Our dear friend, Janice died this past Tuesday, September 4, 2001. I received an IM from her best friend Janine, tonight. Janine had been reading the boards, as Janice had told her about this site, and she came upon my name and decided to IM me. I am grateful that she did. She said that she knew that Janice would want all of us to know that she didn’t just stop posting.

For all of the newcomers to the board that did not know Janice, she was a very caring individual. She always had something positive to say. Janice was 36 years old, was married and had no children. She had a miscarriage in December and began to have symptoms of Cushing’s during that pregnancy. After the pregnancy, she continued to have symptoms. When discussing this with her doctor, she was told that her symptoms were just related to her D&C. She did not buy this and continued until she received the accurate diagnosis of Cushing’s Syndrome (adrenal) in March of 2001. Tragically, Janice’s tumor was cancerous, a very rare form of Cushing’s.

Janice then had her tumor and adrenal gland removed by open adrenalectomy, a few months ago. She then began chemotherapy. She was very brave through this even though she experienced severe side effects, including weakness and dizziness. She continued to post on this board at times and even though she was going through so much, she continued with a positive attitude. She even gave me a referral to a doctor a few weeks ago. She was my inspiration. Whenever I thought I had it bad, I thought of what she was dealing with, and I gained more perspective.

Janice was having difficulty with low potassium levels and difficulty breathing. She was admitted to the hospital, a CT scan was done and showed tumor metastasis to the lungs. She then was begun on a more aggressive regimen of chemo. She was discharged and apparently seemed to be doing well.

The potassium then began to drop again, she spiked a temp and she was again admitted to the hospital. She improved and was set to be discharged and then she threw a blood clot into her lungs. She was required to be put on a ventilator. She apparently was at high risk for a heart attack. Her husband did not want her to suffer anymore and did not want her to suffer the pain of a heart attack and so chose for the doctors to discontinue the ventilator on Tuesday. She died shortly thereafter.

Funeral services will be on Tuesday.

Janice was our friend. She was a Cushie sister. I will always remember her. Janine asked me to let her know when we get the Cushing’s ribbons made as she and the rest of Janice’s family would like to wear them in her memory. She said that Janice would want to do anything she could to make others more aware of Cushing’s.


A Poem written in Janice’s Memory:

JANICE’s POEM

When I Am Done
When the leaves settle
Among the earths soil
Then will I find peace
For all my work and toil.

Know not I when it will be
But of its happening, it’s a certainty
For once sick in body
Though healed in time
Can never be wiped clean
Of the illnesses grime.

The stamp of death
Left upon this soul
Will never have reason to fear
It’s pearly gates that have come, for some
But for me only when I am done.

~Adrienne Lilley

Written in Janice’s memory, may she rest in peace always.

One thing about Cushings—I no longer fear death. But I sure do embrace life.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

%d bloggers like this: