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Kimberly, Undiagnosed Bio

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A Golden Oldie

What can I say in this bio?

Well,  I started to get sicker and gained a lot of weight of age 7 years old. in the mean while, this concerned my parents.Another issues started to occure which happen to be I got sick one night and went to the hospital, and they dianoised me with diabetes.

From the time I was 10 years old through my teenage years. My parents tried to get me on a eating right plan, but they realized I still could not loose the weight, and I still was sick. My parents decided to dump the endro I had, and find a doctor. This doctor happen to be one of the best doctors because he told my parents she looks like she has cushings.

Well, I had to leave my doctor that I love because I turned 18. He was not a adult doctor.  My parents had to find me another, and they did. But the doctor i seen for a short period time died of a heart attack. Than we ended up with the doctor I have now, and he dianoised me with thyroide issues. He even said this is whats giving me the symptoms.

4 years have gone by and nothing has changed. I found out I was not converting to T3, and my thyroide has gotten a lot worse. My thyroide is 4 times larger and it is gaining a lot of water. My parents see I am not getting better, and my doctor is dragging his feet. We are going to see another doctor for a diffferent opinion.

My parents are thinking that I could have thyroide issue that the doctor is passing up that is causing cushings like symptoms, or this could be cushings in itself. We are still testing and fighting to get answers.

We are excited about getting a second opinion, and my PCP was delighted to give me a referral to see a doctor outside my county. Not to mention, my PCP is getting concerned.

 

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Syndi, Pituitary Bio

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A Golden Oldie

My partial bio…Hi everyone.  Dr. Ludlam in Seattle, WA is 99.999% certain I have Cushing’s Disease, probably Cyclic but I believe I used to be all the time.  I do have a tumor on my pituitary but before Dr. L can say 100% Cushing’s Disease, he needs one more test (?) before he sends me to the surgeon.  He’s concerned there may be another tumor elsewhere and needs to make certain.  Something my family does not accept.  They view all this “testing” as a money making scam.  But with my thought process being so poorly, I can’t explain myself.

One daughter went with me last visit with Dr. L and understands the severity of this but noone wants to believe her either.  Last time I saw my Dr. was 3 years ago.  Why?  My husband has always been the sole breadwinner, I was a full time mother of 4, working some here and there and even finished college.  Yea me.  BUT, for years now, I’ve not been able to think well, have difficulty getting around, have more bad days than good.  My life is just about exisitng.

But my husband has terminal Cancer, a Heart condition but working again these days but don’t how long that’ll be.  When he couldn’t work, we lived off and spent all our savings, sold belongings, etc and during all this, we lost our Medical Ins AND our Life Ins.  The Lifs Ins has been heart breaking!  All we’ve put into it for over 30 years.  Such a loss!!!

So, life for us has been really bad for years in soooo many ways.  Can we say stress?  No one can imagine all we’ve been through.  It’s honestly been more than all Soap Operas together.  So much, that I’ve cut myself off from all friends, due to not having anything positive to share.  How sad?!?  I’ve always been a huge social person, on the  go and having something constantly going on with tons of people around.  NOT anymore.  I call noone!  Ok, my Mama.  So, the Ins loss and money issues has been my reasoning for not seeing my Dr.

But my goal this year is to so what I can to take care of me!  I finally got Med Ins but it’s not great, but better than nothing.  I’ll be having a heart cath (I think it’s) next week, so problems have just gotten worse than better.  As you know, with this disease, it’s always something.  grrr  Anyway, I’ll come back here (when I remember) and rewrite or simplify.  There is way too much to share at this moment.

Mary O, thank you so much for taking the time to love other’s enough to have this site!  My biggest issue right now is to find the very Drs in the US.  It may be Dr. Ludlam but with my husband’s thoughts, I need to hear from others about him and other’s.  Love life and live it the best you can, even if it’s sitting in a chair.

Syndi of Alabama

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Cassie, Pituitary Bio

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A Golden Oldie

Hi.  I was diagnosed with a 2.5 pituitary tumor and Cushing’s Disease in late April.  I had surgery and it was removed in early May.

I was feeling fantastic until mid-July.  Now I have pain constantly. My joints and muscles hurt so badly that I can barely walk.

I was so happy to have the diagnoses after 25 years of complaining to doctors about my symptoms.  However, I am in so much pain now that I almost wish I had never had the surgery.

On the up side, I’ve lost almost 40 lbs. Help!!

Any advise would be incredibly helpful.

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Robert (birdflu), Pituitary Bio

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I was diagnosed with Cushing’s in 2006 and had a pituitary tumor removed in 2007 (Swedish Hospital in Seattle).

It took a few years and dozens of doctors to get there. My health has improved since then, but I’m not well (except maybe in comparison to how bad I was). I don’t have the energy to write up a detailed bio at the moment, but it’s pretty much the same as anyone else here: misdiagnoses, bad doctors, frustration, confusion, etc. It will come out in my posts, but I’m postive I can feel better than I do.

I just need a doctor that knows what they’re doing AND has more than a ten-minute visit to spend on me.

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Vicky, Pituitary Bio

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I was finally diagnosed with Cushings Disease in November 2012 and had the tumour removed from the Pituaitary Gland in Dec 2012.

I got an infection in the brain on the site of the tumour and was ill for 3 months.  It is the most terrible disease and as a result of this I have now got many more things wrong with me.

i recently was diagnosed with breast cancer and I am sure that it has been caused by the Cushings.

If anyone else has the same experience I would be glad to hear from them.

 

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Shawnna H (Shawnna), Undiagnosed Bio

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I am a 37 year old woman, who has been exhibiting most of the symptoms of Cushing’s for a least 7  years.

My family doctor treated each of my symptoms individually or told me I just needed to lose weight.,  It wasn’t  until recently ( when i was diagnosed wth diabetes type 2, an underactive thyroid, high blood pressure, and kidney distress) that i insisted he look into my endocrine system.

It didn’t seem plausible that all that would occur and my endo system to be ok.  I also have been diagnosed with severe depression and severe generalized anxiety disorder.

I have completed the UFC test and was told my cortisol levels are extremely high.  I am currently awaiting an appointment with an endo in my area and am positive Cushings will be detected. In the mean time I am just looking to meet other people with the same issues I am having.

I was referred her from facebook. Thank you!

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Valencia, Undiagnosed Bio

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A Golden Oldie

Hello.  I was led to this site while searching for information.  I am surprised to find out that so many people have similar stories to my own.

Last summer I went to the ER because of unexplained vomiting.  They said that my liver values were off, and I needed a CT scan.  So I went to my internist and after the scan he called to tell me that they found a tumor on my left adrenal gland.  He told me to stop taking Metformin, and at the time I was taking 850 mg 3 times daily.  I am severely diabetic, have hypertension and am taking 5 blood pressure meds.  I have had a lifetime of weight issues, missed periods for years at a time, have had hair loss on my head, but I shave my chin and mustache every day since I was a teen, and I am constantly tired.  I also am obese, but eat usually once a day now, since my abdomen is so large.  My legs and arms are smaller than the rest of my body, and this has happened over the last 10 years. I have a buffalo hump, and have since I was a teenager.

The last 2 endocrinologists I went to just yelled at me for not eating properly and not monitoring my glucose levels.  One told me that she was glad my daughter is married because I am going to die.  She never checked me for anything.  The crazy part was after the internist called me and said that I would have to have surgery to remove the adenoma, he changed his mind.  All of a sudden, he said I needed to be followed by an endocrinologist, after he knew the two that I had been seeing.  He referred me to a new endo, who immediately said she didn’t think I had Cushing’s syndrome, but she ordered some tests.  I didn’t take them because she was in the process of leaving the practice.  I see a cardiologist who insists that adrenal adenomas are common, and usually don’t require any attention.  UMMM, I am on 14 different medications for diabetes, hypertension, depression, and arthritis in my back.  I think the evidence is present, but the doctors don’t seem to want to deal with my situation.

So, I changed doctors.  I go to a new endocrinologist on 9/2, and I pray this one will listen.  My health is failing, and my quality of life has sufferred because of all of these problems.

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Sue, Adrenal Bio

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A Golden Oldie

Hello again.

I haven’t visited this site for a long time. Two years ago a beautiful girl from the west coast of Florida found me on here. I thank God for her .Although we have never met, she is like a sister to me. We laugh and cry together every day. I plan on visiting her this month. I have had Cushings for approximatly fifteen years. I diagnosed myself with the help of a nurse friend of mine and a book.

I think my predominant emotion is anger. I know it is a rare disease, but good grief even some of the endos I have seen must have fallen alseep in class that day!! I’ve been through “you have the fat gene” to E.R. physicians thinking I am a pain pill addict. I watch my wieght…go up!! lol and I am in pain evry day. I have severe osteoporosis, frequent PID, walking pnuemonia,chronic bronchitis,mercer staff, hair growth, you name it.

Irritabvle bowek syndrome and my vision had deteriorated rapidly. I am 47 years this July and the psychological effects of Cushings have been the worst. You can put a bandade on woulnds that won’t heal, but there isn’t a pill that can take away all the depression and anxiety or mood swings. There isn’t enough Red Bull to not fall asleep after being up over 72 hours and finally there isn’t a doctor I really trust anymore.

I am headed to the National Instsitute of Health this month to undergo tests. I will be thier guinea pig for a week. I just had my hearing for Sociual Security Disability and that was hell. Life in America is so much easier when you have insurance. I hope that the NIH will recommend the surgery I need to get well again. I have a left adrenal tumor that is growing.

I am a Pastor and I pray every day and night to be healed. So far no luck!! lol Jesus will guide my surgeons hand..won’t he?

Sue was interviewed in the Cushings Help Radio Show on July 27 at 5:00 PM eastern.

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Pati, Pituitary Bio

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A Golden Oldie

My daughter is 13 and has been diagnosed with Cushings Disease.  We are having our final MRI and IPSS test this coming week and surgery in September.

I am looking for all the information I can find!

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Leslie, Undiagnosed Bio

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A Golden Oldie

I have no diagnosis but have a number of questions.  I think for now I would like to read others experiences.

Update September 5, 2011

Hi,

I am wondering if the issues I am currently having may be related to Cushing’s.  So I am actually looking for more information, before I ask my doctor about testing.  I have always been in the short and fat catagory physically, however in the last few years I have gained a rediculous amount of weight all in my middle.  Recently my blood pressure has gone from running very low 110/70 on a high day to 152/108.  I am waiting for more test results, blood sugar, etc.    In the past I had a horrible reaction to a cortisone shot in my knee that resulted in stretch marks that appeared overnight and horrible itching and agitation and am wondering it this was a symptom related to cortisol levels in my system already being to high.

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