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Lauren (Iskah), Undiagnosed Bio

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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.

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AllisonChained (AllisonChained), Undiagnosed Bio

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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.

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Julie M (Jules), Undiagnosed Bio

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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

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Trish G (Trishg), Undiagnosed Bio

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question

 

I have hypothyroidism and recently undergoing tests for Cushings disease.

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ghadeer (gogo), Undiagnosed Bio

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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 .

 

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

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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

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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*

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