Home

We Have a New Bio Form!

128 Comments

We have a new form to add your own bio!

Try it out below…

 

 

Thank you for submitting your bio – sometimes it takes a day or so to get them formatted for the website and listed on the pages where new bios are listed.

If you are planning to check the button that reads “Would you like to be considered for an interview? (Yes or No)” please be sure to read the Interview Page for information on how these interviews work.

Please do not ask people to email you answers to your questions. Your question is probably of interest to other Cushing’s patients and has already been asked and answered on the Message Boards.

Occasionally, people may comment on your bio. To read your bio and any comments, please look here for the date you submitted yours and click on the link.

Please post any questions for which you need answers on the message boards.

 

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

Sue, Undiagnosed Bio

1 Comment

A Golden Oldie

Hello – My name is Sue and I’m 42 years old.  Before Friday, 10/15/10, I had never heard of Cushing’s.  I went in for a physical and had routine blood work done (fasting) and then went in the next day for a cortisol and aldosterone test.

This was a new doctor who didn’t know my history… she noticed my ::blush:: beard, red puffy face, and central obesity and then started asking me some questions.  I stll had no idea why this many questions.  She said that she wanted to get an abdominal ultrasound and wanted me to seen an endocronologist.  Ummmm…. ok… still had no clue. After my cortisol came back at 23, she called me back in and explained that she wanted to get a CAT scan of my abdomen.  I asked her what this was all about, and she said that she thinks that I have Cushing’s.

I have been on blood pressure medication since 1998, and my ‘normal’ bp is 135/90.  At my physical it was 155/100, another warning sign… she doubled my meds and had me come in the next day.  BP was better 145/90, but was still high… so she prescribed an additional medication.

I don’t want to make this too lengthy, but I have several other symptoms too…  I am currently disabled due to depression/anxiety, and I have even gone through ECT treatment twice for it.  I take meds for depression, anxiety, sleep and psychosis.  I have to take a potassium pill every morning to maintain a healthy level and some mornings I can’t even move for a while due to joint pain.  Hot flashes and night sweats are not frequent, and I thought I was going through the beginning of menopause.  At times I would have sweat dripping off of my forehead.  If someone would look at a picture of me and see if maybe I resemble a Cushie??  I am waiting for the appointments, but the more I read about it, the more it sounds like me.  Thank you.


Sue also submitted a second version of her bio:

Hi!  My name is Sue, I am 42 and I live in Central Massachusetts.  During my physical with a new doctor, my blood pressure was found to be high, even though I have been on Hypertensive meds since 1998.  She doubled my dose, and it was still high.  She then put me on an additional medication, and that took it down a little bit. She then noticed my razor stubble on my neck and chin and asked about that.  Prior blood work showed that my cardiac inflammation was 5X’s the “high” limit (2 years ago) and the doctor at the time told me to take 1 adult dose asparin a day.  I had severely low potassium and she told me to take a supplement.  I am 5’5″ and weigh 224 pounds an it’s literally ALL in my stomach and cest and back.  My face is all puffed out and red and splotchy.  I suffer from sleep apnea and I lose my breath if I lay down flat on my back.  I thought I was having hot flashes, because I have been having night sweats and during the day I sometimes get so flush and hot that the sweat literally drips onto the table.  I have rosacea and I flush easily.  I am disabled due to depression/anxiety/psychosis and I have even undergone ECT treatment for it (electroconvulsive therapy-shock treatment)

I was reading some of the bios and started to cry…  I could see me in so many of the stories and pictures.  Could it be possible that all of my issues are related to this disease that I had never even heard of before?  I do not want to be sick, but if it is Cushing’s that I have, I will have hope that I haven’t let myself go. 🙂  You all seem to be very loving and supporting.  Thank you for being here.

There are other symptoms I have, but these are the most bothersome.  My blood cortisol level came in at 22 and my aldosterone was high also.  I am waiting for an appointment for an abdominal CAT scan and a referral to an endochronologist.

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

Catie, Possible Steroid-Induced Bio

Leave a comment

A Golden Oldie

Hi.  My name is Catie.  I am 49. I am asthmatic and have COPD.  I am tired of being sick and no one listening to me and knowing that something is wrong.

I have been pretty sick since November 1999.  I am constantly on steroids of one kind or another because of my lungs being pretty bad.  I have to use steroid inhalers daily and I have an updraft machine that I use daily also.  I had a complete hysterectomy in January 2000.  The doctors all told me that was what the problem was.  I was still sick afterwards.  I started having stomach issues in 2001.  I was vomiting all the time.  My primary doctor of 23 years would not listen to me when I would tell him that something was wrong, that the pain in my stomach was horrible, that I was vomiting bile all of the time.  He told me flat out that couldn’t possibly be true because I wasn’t loosing any weight.

I had a heart attack in 2002 and while in the hospital my heart doctor ordered an endoscope done.  I was then told that I had acute gastritis and GERD along with gallstones.  My gallbladder was removed.  I was still sick most of the time and now on even more medicines to calm down the gastritis.  I was becoming so tired and so weak that my heart doctored ordered a sleep study in 2003.  I am now using a CPAP.  It has helped my sleep and the GERD, but I still felt so bad all of the time.

The weight kept piling on, mainly in my stomach, neck, face and shoulders and what is that bulging fat pad between my shoulders?  I just cry when I have to look in a mirror at myself.  I am not a vain person but I used to have such pretty eyes, now my eye lids are red all of the time.  I wear sunglasses whenever I go anywhere and I never wear any low cut blouses because my chest is red all of the time.  I was becoming so depressed about not being able to loose any weight at all no matter what I did and no one really listening to me when I would tell them that something was wrong.  Why was my face so red all of the time?  Why couldn’t I loose any weight, even a pound?  Why am I so tired and weak all of the time?  I have to have my glasses replaced every 6 months because my vision is so distorted.

One doctor gave me antidepressants that almost killed me.  I am so allergic to medicines now that if a doctor gives me a new one I am afraid to take it, especially all of the new and improved medicines.  I basically gave up on going to any doctors because no one would listen to me.  I am constantly getting pneumonia no matter how careful I am and in 2009 things became worse and I found a new doctor.  He ordered a complete blood test and told me that I was diabetic.  I was put on meds to try to control it but nothing worked.

It doesn’t matter if I eat carbs or not, my sugar is uncontrollable, so I was sent to a specialist.  On my first meeting, a month ago, he sat down with my blood test results and told me that I had abnormal liver levels and my AC1 was 14.8.  Yeah, way high, it should be below 5.  Then he said that just by looking at me he was 95% sure that I had Cushings disease and that is probably the reason for all of my sugar problems that are going on.  I was put on insulin immediately and I had to do a 24 hour UT.  I am supposed to go back this week on Thursday 10/21 for the results.

Nothing has been said about the abnormal liver levels that are pretty high, so I don’t know if or when that will be talked about.  Will the UT show what that is all about?  I had never heard of Cushings and started looking it up to see what all it entailed and I found this site.  I have been reading through the posts and it sure sounds like a lot of my complaints.  I know this sounds awful but I really feel like it would be a relief to say, “YES, this is what is wrong with me!”  Does that make sense?  I do not take hormones, there is too much cancer in my family for me to take them.

I have a horrible time with stress issues and I try to avoid any stressful situations but not knowing what is wrong with you is stressful in itself.  I do take 2 high blood pressure meds, blood thinners because I have 3 stents.  I have 2 arteries that are 50% blocked but they won’t do anything until they are 60% or you have another heart attack.  How awful is that?  I was put on a diuretic and potassium and boy they give me leg cramps that are out of this world but it has helped the pitted edema in my legs.  I take 3 stomach meds when I have flare ups but not all of the time.  I do not drink alcohol or smoke.  I can not exercise much because I just don’t have the energy or the air to do much.

I basically am stuck until someone somewhere decides to try to find out what the problem is and doesn’t just pat me on my head and tell me to not worry and here take this pill.  I am so frustrated and tired.  I have a good family support system but even they get tired of hearing that I am not doing well.  I don’t go anywhere or do anything anymore.  I used to do needlepoint, sew time period clothing for rennaissance fairs and oil paint but I can’t see well enough to do it anymore and my hands shake too bad even if I could see to do it.  Boy, talk about a pity party.  Sorry.  I collect Tonner dolls, Barbie, love to read even if I have to use a magnifier over my glasses, take animal pictures, watch movies, cook and I adore cats.

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

Mike H, Steroid-Induced Cushing’s Bio

Leave a comment

 

i am a 65 year old male who was diagnose with cushings about 7 yrs ago

i have no adrenal glands that are working

i have to take prednisone to keep me from crashing

am now a diabetic and have heart failure

i spend 99% of my life in bed i am very weak and in pain most of the time , my family doctor keep giving me prenisone and never gave my body a break from this drug so now what caused me to be so sick is what i have too take to stay alive.

my doctors now really dont no that much about cushings so i feel as though i am just stuck ,

 

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

Ashleigh, Pituitary Tumor Bio

Leave a comment

 

I’m 28 years old. I had a pituitary tumour removed at the start of this year.

My main symptoms were weight gain, bright red stretch marks, joint pains, muscle loss and fatigue.

I was originally diagnosed with PCOS, but when diet and exercise caused no improvement I kept looking. Once the stretch marks appeared I was referred to an endocrinologist who conducted urine and blood tests. My cortisol levels were double the normal level. I was then referred to a surgeon who ordered an MRI and found the tumour.

The tumour was removed.I was in ICU the first night then a week more in hospital. It took me about 3 months to recover from the surgery. I am now recovering from the disease itself which is ongoing.

I do physical rehabilitation 6 days a week as well as regular seeing a dietitian, psychologist, endocrinologist, exercise physiologist and hormone specialist.

I’m hoping to return to work next year, which will be about a year after my surgery. I believe the disease has manifested for many years.

I think the perhaps the hardest part of the disease is the time it takes to get a diagnosis. I hope my story can help others get their answers sooner.

 

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

Roberta “Bert” P, Undiagnosed Bio

Leave a comment

Hello Everyone,

Like all of you I am in pain, gaining weight, have moon face, etc. I have had Fibromyalgia for over 4 years and am lucky to have a very good doctor for that who is a specialist in his field-Dr. Pelegrino.

However for the last year or so I have had pain that is more than the tender points and general fatigue you get from Fibro. We started giving me cortisone shots every 5 weeks or so for the “bad” areas, but the “bad” areas are worse now and have enveloped my muscles to where I don’t know what to do. My fingers are aching just typing this. Does anyone else experience this? Do you use the thing that you can talk in and it types? I have so many questions but will have to ask more later.

My main question is about this horrible tightness and pain to turn my head-is this a symptom? I have had it for more than 2 weeks it is from the base of my skull to my shoulder blades. Any suggestions to help ease this would be welcome. I take Vicodin now but it is not affecting it and can’t take steroids because I am having the test next Monday to see how high the cortisol is. I had a saliva test and it was pretty high on that so now they are trying this.

I also have elevated blood sugar, lowered thyroid, higher blood pressure and the purple stretch marks on my stomach. My face has officially become “moon” so is this pain from the “hump” forming that I have read about? See how scatterbrained I am-my memory is totally gone-if you tell me something and I have not written it down it is forgotten, which is bad especially for my job.

Thank you in advance for your support and helpful advice.

Bert

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

Elaine, Adrenal and Pituitary Bio

Leave a comment

I have a tumot in both the pitutiary gland as well as the adrenal gland and doctors dont know which is secreting very high levels of of cortisol.

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

Barbara S (Babs1953), Adrenal Bio

Leave a comment

Was finally diagnosed in Feb of this year.

Had surgery mid March to take left adrenal.

Am still on 3mg prednisone daily. Lots of joint muscle aches, headaches, hair falling out, dry skin, split nails… sleeping a bit better but tired during day,can’t walk long or stand without feeling like I’ll hit the ground any minute.

Any weight lost right after surgery is back!

 

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

Patricia’s Daughter, Undiagnosed Bio

Leave a comment

 

My daughter (15) since Jan 2018 all signs from cushing!!

But Doctors still not sure !!

My child , my daughter (15) has pain allover , she needs help!!

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

Jennifer P’s Daughter, Undiagnosed Bio

Leave a comment

 

Mom to a beautiful 13 year old girl who has struggled with her weight for years.

After slowed growth doctor diagnosed her as growth hormone deficient and she has done injections for almost a year. She has grown some but still has truncal obesity and other symptoms that point to Cushing’s.

Her endo blows me off bc she doesn’t have the purple stretch marks but my fut tells me we are missing something.

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

EvE7070, Pituitary Bio

1 Comment

Hi and good evening new here So im EvE7070 and oh my were do i start.

I was finally diagnosed with Cushing‘s 2015 To wich i had no clue what it was and how horrible it would change my life.

But lets start before when it first started I was a gym rat and eat very lil and would do fasting often and one day my menstrual cycle changed and I stop getting my periods and after that I gained about 60 pounds out of nowhere and I decided to see a doctor who told me that I had a hormone deficiency and they put me on something called glucophage which instead of making me lose weight made me gain another 30 lb within the few months of taking it and nobody knew what was wrong with me or how to treat me and I was very depressed for so long because every time I would see a doctor they would say you’re obese and you need to get on a diet and I would cry and tell them I don’t eat I exercise everyday and I don’t understand what is happening to my body i all of a sudden had every disease you could think of and know doctor could tell me what was wrong

i even got a allergies to peanuts which I had never had a problem with before crazy right

So finally after so many yrs i stated getting headaches to witch they said migraines and then my eyesight started to get affected and finally they said no maybe it’s just a sinus infection to where I had to have an X-ray done of my sinuses and that’s when they saw the tumor and my pituitary gland

So had surgery 2015 was on remission until the beginning of this year I started getting headaches again and my eyesight was starting to mess up and decided to go back to the endocrinologist and now they tell me that my cushing‘s is back and I’m hoping that my MRI comes out okay and I don’t have a tumor again but I don’t know what the odds of that happening again of another tumor this is the hardest thing that I’ve had to go through and I’m having a really hard time trying to adjust again to everything that’s going on with my body they say the second time around is worse than the first time and so far it’s true emotionally my depression is at its highest

I’m having problems with coordination brain fog concentration problems forgetting what i was taking about and im really scared I won’t be able to deal with it this time It took me so long to get back to wat ever normal is and now im back here again

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

Older Entries