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Kara E (Pollyanna Pitbull), Adrenal Bio

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51 year old female.  Diagnosed in the last 3 weeks with Cushing’s, Lupus, APS and Osteoporosis.  I am on meds for diabetes, hypothyroid, hypertension, high triglycerides, and DVT.

Looking at pix my providers think I have probably had this for over a decade.

Awaiting next steps and treatment at Emory in June.

Found your sites and am so grateful to read information that is informative, hopeful and honest.

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Kathleen (ForegoneLegacy), Pituitary Bio

8 Comments

golden-oldie

 

Originally posted November 20, 2008

Hi, my name is Kathleen. I’m 24 years old and live in southern pa.

I had my two pituitary tumors removed 8/22/08 and I’m still not feeling any better really.

Over the last decade I have been diagnosed with cushings, Lyme, lupus, endometriosis, sinus
tachycardia, fibromyalgia, arthritis, asthma, the list seems to go on and on.

And I guess I had it in my head that once I had this surgery that I would magically get better and move on with my life – go to college, get an apartment, get my license, and hopefully lose all the weight so maybe one day I could be confident enough to start dating again.

Its been nearly 3 months and I seem to be losing hope. My neurosurgeon says that the pathology reports showed “essentially” nothing (still not sure what that means) and that he doesn’t need to see me again.

The ENT who did the surgery was wonderful but can’t really help with anything but making my
nose/sinuses/gums ok. 🙂 And endocrinologists – I have been seeing them for ten years, and never met one whom I liked or who was helpful. Right now I’m getting a full cardio workup to try to fix my weird rhythm.

All of this is being done at Georgetown in D.C, but I’ve been all over the east coast. I don’t know, I guess I hoped maybe you’d have some insight or hopefulness to latch on – cause I put all my eggs in this basket and I feel like I’m about to drop the basket.

Thanks for listening,
Kathleen

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Wanda G, Undiagnosed Bio

3 Comments

undiagnosed2

 

I’m 44 years old and I have always been around 130 pounds but now weigh 283.

When I was around 25 I started having joint pain and started gaining weight and that is when I first started noticing my small buffalo hump. As the years went on it started gaining more weight, irritability, couldn’t fall asleep til 3am and very tired and week all the time and doctors couldn’t find anything wrong.

After my last baby I started having chronic hives, headaches every day, body aches, muscle tightness, numbness and tingling in my left foot, hand and upper lip. Most of that finally passed or slowed down. I could keep going but but fast forward a bit.

My buffalo hump is pretty large now, all my weight is in my middle and my arms and legs are thin. With my weight as high as it is you would think they would be heavy. My face is round and solid red, few red stretch marks on my stomach, telangiectas, memory loss, concentration problems, headaches.

Three years ago for almost a year I had severe weakness in legs and arms, trouble breathing and swallowing. I was diagnosed with lupus 5 years ago and polymyositis(all of my lab has come back normal & emg on my muscles that there is no damage so I doubt this dx)

Now I don’t stay up til 3 but my usual bedtime is midnight. Sorry for rambling but there are so many things that go on with my body it’s hard to get it all out.

I would like to know if anyone in Oklahoma City area know of a endocrinologist that knows a lot about Cushings because if I have it I think I’m cyclical.

 

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Sharon, Undiagnosed Bio

1 Comment

A Golden Oldie

Hello. My name is Sharon. Im 42 years old from Saskatchewan, Canada. I’ve been lurking on this site for about 3 weeks now, and finally decided to add my story. I appologize now if  I get carried away, but here goes.

As a youngster, I was always a healthy kid, seldom sick. Always active, very athletic. Sports were my life. But I did always have very heavy periods, and painful ones, right from day 1. Doctor said it was Mother Nature, and was told to live with it.

Got married, had 2 children. In between the 2, I had to have my gallbladder removed, unfortunatly it was an unsuccessful surjury. I still get attacks till this day. A hernia operation, 3 months later, a hysterectomy. (due to endemetriosis) a year later, the removal of one of my ovaries. I must admit I never felt right after the hysterectomy, but chalked it up to being in early menopause.

Then a year ago, my husband had to rush me to the ER. My heart was palpatating so fast I could feel it in my ears. A second visit to the ER for more of the same. The Doctor on that visit seemed annoyed, and said, get your thyroid checked. I thought, why not. I’d been suffering from freezing cold hands and feet anyways. Tests came back normal, and after a holter test, they told me my heart had an electrical problem. I was put on pills to regulate it.

At this time, the weight gain started to elevate. Being thin my whole life, I was startled by this. I’ve always eaten healthy. We are not an eat out type of family, I prefer to cook at home. But I decided to become more strict with what I ate. I always walked for excercise, now I added a half hour of core workouts and a half hour of abdominal workouts, 6 days a week. Plus my daughter, who was a health coach at Herbal Majic, put me on a plan.(minus the herbs, just the menu) Weight loss after 2 months was zero. She said, Mom, this plan works, why is it not working for you? Good question.

Im also into alternative methods to maintaining health as well. I purchased a chi machine and far infrared hothouse. While it has helped with my constipation issues and seems to have kept the gallbladder attacks away, it had done nothing to help aid in weight loss. (my friends and family however, have all lost weight in it)

Then more puzzling symptoms appeared. Always covered in bruises, major hair loss. Feeling very tired. And it showed in my face, because I have countless people who tell me I look tired. Yellow eyes from time to time. (could be from the gallbladder issues) This went on for a year . And in that year, I gained 25 lbs, 5 of that was literally overnight. .

Then 2 months ago, my heart medication stopped working. The palpitations are back, as well as a very low heart rate at times. And a shift from freezing cold hands and feet, to not being able to tolerate being hot. Noticed facial hair, my normally straight hair if full of waves and curls. Wake up drenched in sweat (chalked that up to menopause too) While I have maintained my weight at 142 lbs (115-120 lbs is my norm) my belly continues to grow. If it wasn’t for the hysterectomy, I’d swear I was 6 months pregnant. Then I developed a burning pain in my right shoulder. The pain is always there, makes it hard to use my arm at times. Some days its severe, at times during the day, the pain is tolerable. I thought maybe I dislocated something excercising. After a bath I decided to have a look in the mirror, and discovered a hump on my back I never knew I had. I think the hump and shoulder pain are related. I lay on a far infrared heating pad for the pain and it helps. Pain medication does nothing for it.

But not only is my belly growing larger, I noticed my face and neck growing larger as well. And my once smooth skin has turned rough, and red. Acne breakouts that leave scars and even a couple of skin tags on my face. This is all new to me. After careful examination of my neck, I realized I had a few lumps on the right side, and a fatty pad under my right collarbone. And when I press on that fatty pad, I feel the pain in my shoulder. Im exhausted most days now, from the pain, and not sleeping through the night for the past 2 months. I get up 2 to 3 times a night to pee. The other day I noticed that my pee had a really foul odor.(sorry for the TMI)  But it never burns.

Well, the final straw was a rash that appeared on my back. Even though I had a Doctors appointment in a week, I decided to go to the ER as the rash had me freaked out. I made the mistake of telling the nurse I thought I might have cushings. (had been reading the patient bios. It all seemed to add up) She smirked, and took me to another room. The Doctor came in and in a condecending tone, asked me,”what does google have to say about cushings” I should have told him that I leaned more from actual patients who had been diagnosed than I did from google. But we ran through my symptoms. He assured me he thought I didn’t have it. It was probably all menopause. He asked to see my drivers license and told me he thought I looked no different. I asked him if he could feel the lumps in my neck, he said no. (at this point I knew I was wasting my time)

He asked if I had used a heating pad, I lied and told him No.(Because he ticked me off) That may have been my saving grace. He called in another Doctor to have a look at this rash and neither one could figure it out, so he ordered alot of blood work. (odd though, i’d been using this same heating pad for years, and never developed a rash until now) They took blood sugar (a little high) urine, shoulder x ray. I was told to follow up with my Doctor. A week later my Doctor informs me that my blood sugar  in the ER that day was very high. And a large amount of sugar in my urine. He never said a word to me about my urine that day. She told me that one of the blood tests that came back showed abnormal for lupus.

Although she feels I am neither diabetic, or have lupus, it lets her know that there is something definatly not right. But the affirmation I got was from my Doctor who took one look at me and told me I did in fact look different. She could see the lumps without actually touching them. I guess Im not crazy after all.

She set me up with a specialist who told me flat out that he did not think I have cushings, because he sees the worst of the worst. I then showed him a picture of what I normally look like, and took a pause. Well, he’s looking into plenty of things, he has included cushings after all. And assured me if the tests come back normal, we will retest, and retest. Im also scheduled to have a thyoid ultasound in April. I feel like there is now hope that we might find an answer to all of this.

I went from being a shy person, to someone who is outspoken. I felt I needed to be, because I wasn’t being heard. Im angry at being dismissed over the years, and to the Doctor in the ER, i know i must have bruised his ego by telling him what I felt was wrong with me. Although I have alot of things wrong with me, there was nothing wrong with my hearing that day, when I over heard the Doctor and Nurse making fun of me.

I feel for each and everyone of you who’s stories I have read the past 3 weeks, who have had to endure way worse hardships than myself. I read how often you are mistreated by Doctors, and the horrible situations that you have gone through.

It breaks my heart. But each of those stories have given me the courage to fight for myself and for that, I can’t thank you enough, for being so open in sharing your lives with us.

God Bless You All!

Update May 18, 2012

Since my last post, there has been some developements, I’ve had a thyroid ultrasound and cat scan on my neck. They discovered 3 thyroid nodules the size of a pea. My Internist says that it does not explain my symptoms. An incidental finding was arthritis and disc degeneration in my neck. I am also newly diagnosed as active hypoglycemic.

Another 8 lb weight gain in 2 weeks. During those 2 weeks I lost my appetite and got the flu twice in 1 week. I barely ate enough to stay alive in those 2 weeks and still gained weight. My Internist told me he is at a loss. The swelling in my neck is now on my left side as well, and a chunk of thigh muscle in my left leg has all but disappeared. I ended up spending Mother’s Day in the ER. I woke up that morning with a burning pain in my chest and was so dizzy I couldn’t walk a straight line. Stayed dizzy for the next 5 hours. The heart checked out fine. The ER Doctor listened to my history and wished me luck, he had no idea either. I have had 3 Doctors tell me that if it is cushings, “do you know how hard that is to diagnose?” Meaning it’s to hard for them to figure it out, so they won’t bother. My Internist who tested me for cushings took a blood test, and told me that the 24 hour urine test, is old school. We don’t test for it that way anymore. Just a blood test. Of course mine came back normal. All my tests seem to be coming back normal, however I decided to document my findings as NO ONE believes me, except my Primary Doctor. But she knows nothing about cushings, she just sees the physical changes in me. I video taped the yellowing of my eyes, took pictures of my expanding belly, the hump on my back, the loss of muscle in my leg. And these strange muscle twitches that are happening throughout my body. The only thing my Doctor can do for me is to refer me to an Endo, which she is now doing.

My husband grows increasingly frustrated, and has told me that, you’ll be dead before they find out what’s wrong with you. I feel the same way. Knowing my Birth Mother died when she was 49 years old from a massive heart attack, but had the same physical symptoms as me, is scary. I am almost too tired to fight anymore but my Husband and kids keep me going. It’s been a battle, and I am far from winning yet. Will keep you posted.

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Leah (Lele), Undiagnosed Bio

3 Comments

I am a 34 year old woman, not yet diagnosed, but suspect Cushing’s.

When I came across this website, it was like other people writing my life story.

I was diagnosed with hypothyroidism 15 years ago, with depression about the same time.  Once on thyroxine, I improved.

About 8 years ago, I started gaining weight, especially around the stomach.  Then as time passed, other symptoms appeared.  The depression was coming back worse than ever, despite increased doses of anti-depressants.  I suffered with extreme fatigue, joint and muscle pain, shortness of breath and rapid heart rate.

I had tests for Rheumatoid Arthritis, Lupus, Fibromyalgia, Latex sensitivity, ECG and echocardigram, stress echocardiogram, chest X-ray, lots of blood tests.  The only thing abnormal was low iron.  I tried iron supplements, which do not agree with my stomach, so had to abandon.

Since then, I have pretty much struggled with further symptoms, the latest being the red stretch marks, the buffalo hump, fat on my shoulders (makes it hard to carry shoulder bags – they just slip off!), red, hot, puffy face, excess sweating, even in cooler weather, night sweats, pins and needles in arms, cramps in legs, high blood pressure, bruise easily, sores slow to heal – and that’s just the physical symptoms.

I am so depressed and low on self-confidence that hardly go out anymore, don’t have many friends, and had to stop working as nurse, which is the job I love.

I finally got my local doctor to send me to an endocrinologist in March this year.  She did an ultrasound of my thyroid (showed a tiny nodule) and ordered a 1mg dex supression test.  When the dex test came back negative and I went back to see her, I just cried my eyes out.  She referred me to see a psychiatrist, and said she was done with me.   The usual – you can’t have Cushing’s, its too rare.  No urine tests, nothing.

I called the Pituitary Foundation in my state who are really helpful, and gave me loads of information. The lady mentioned cyclical Cushing’s.  But they can’t tell you which doctor who can help you, it is different in Australia because you need to be referred by your local doctor, and they have no idea who can diagnose Cushing’s or what tests to order.  So now I have really lost hope of getting a diagnosis, it like fighting everyone all the time, just to be taken seriously.

There are days when I have no fight left in me, and wonder how bad it is going to get, will I get diabetes, heart disease?

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