Home

J, Pituitary Bio

Leave a comment

 

When I began this journey in 1999, I could only find one link for pseudo cushings on Google. I actually gave up finding anyone else like me until today. I was misdiagnosed several times before 2001, when I started seeing Dr. David Schteingart at the University of Michigan (two hours from my home). I was to the point where I was lactating, was growing facial and chest hair, was covered in acne from stem to stern, was passing out, had gained 30 pounds in one month – all around my stomach, was developing a hump on my back, was losing hair, had lost strength, memory, and self-respect, and some days couldn’t even raise my head.

With high cortisol, prolactin, and DHEA I was told I had PCOS even though I have never missed a period in my life. I was then told I had diabetes because I had had a high sugar read when I was pregnant in 1995. I was treated with birth control pills, anti-depressants, and diabetic meds. All of these things made me worse.

Finally, I had an MRI that showed a 2-3 mm mircroadenoma on my pituitary. Two more MRIs confirmed the findings. I was sent off to U of M to their pituitary clinic to find that my pituitary was fine. They sent me to their endocrinology department where I was diagnosed with pseudo cushings. I spent several years traveling to U of M monthly and began taking oral ketoconazole. Yes, that’s right, the same stuff that’s in Nizoral the dandruff shampoo. It took about two years on this stuff for me to develop an allergy. Dr. Steingart told me to choose: relief from cushings or relief from the hives that covered 90 percent of my body. I chose to give up the hives and have not taken ketoconazole since 2004. This is what I have come to realize: I cannot live in a stressful life. If I miss sleep, don’t eat well, or stress out at work, my cortisol sky rockets and I’m back to square one. This makes working almost impossible. My adrenals start off and don’t stop when I’m in a pressure situation. I am like a Southern Belle with the vapors pretty much all of the time. The only difference is: I want to live my life. I want to return to my career and be supermom; my efforts are continually thwarted by my body.

I’m anxious to hear if there are others like me out there in the world and how they have coped and made a go of it.

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

MIranda (Miranda34), Steroid-Induced Cushing’s

Leave a comment

steroids

 

Hi,
I have only recently been diagnosed with Cushing’s syndrome,and it is due to the mediciine i take for asthma.ilast year i kept collapsing in the street and iwas suffering from low blood-pressure and hypoglycemia.

 

I live in france where this illness is practically unheard of. I am on two different medications to treat my illness but have gained a lot of weight,have a ‘camel’s hump’,edema on my legs and feet as well as having a ‘moon-shaped face”. I am British-American and would love to hear other people’s stories of living with this disease.

 

I am exhausted all the time,depressed,can’t concentrate on anything…i have trouble leaving the house because i get dizzy and people stare at me and judge me because i am obese.

 

I came to this website to hear other people’s stories and to feel less alone because Cushing’s syndrome is a nightmare.

Take care!

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

Pauline, Undiagnosed Bio

Leave a comment

Hello all
I’ve only just been referred this week to go see an endo so very much at the start of what I think will be a long journey.

I don’t seem to be a typical case of Cushings although I have “the hump” and some slow weight gain which is are the things that have gotten me referred.

Over the past umpteen years I’ve been going to the doctor with all manner of debilitating symptoms (mainly fatigue) and 15 years got diagnosed as B12 deficient and put on injections for it. Then after about 7 years I had to go back as symptoms worsening and was diagnosed as Folic acid deficient. Saw an improvement on taking the tablets but after a year was back to being utterly exhausted, waking at 3/4am every morning, aching everywhere in my body and multiple other symptoms that came and went. After pushing at the docs was diagnosed as low ferritin and put on iron tablets.

Over the next 2 years and ever increasing doses of iron we still couldn’t get my ferritin raised and I had started logging when I felt utterly gubbed and it seemed to be happening anything from immediately after getting my B12 injection to a few weeks after. Because it wasn’t easily definable as related to the injections, doctor didn’t want to make any association but it got to the point where I refused to get any more injections as I couldn’t face the 6 weeks of misery I knew would come after it so he agreed to put me on B12 tablets instead. And low and behold my ferritin started rising and I started feeling better. Luckily I was able to absorb the B12 orally as not everyone can do that. Almost all my symptoms disappeared except the sparse fluctuating periods, some vision problems and my reaction to eating sugar/carb food (Ok, I’ll admit it – biscuits) as I fall asleep at my desk sometimes directly related to what I’ve just eaten.

I believe a lot of what I was experiencing was down to my low ferritin and I’m actually feeling very good just now – but, since my blood has improved I’ve been slowly putting on weight around my middle (I only eat about 1400 calories a day so couldn’t understand it) and I’ve now got hump, and fine blond hair growing on my face. I’m 50 so doc had previously presumed I was just menopausal and that was what had stopped my periods but after 8 months one appeared. I had previously shown my hump to another doctor last year when I was there for back pain but was just told to sit up straighter at my desk. On showing my present doc the hump he said immediately he was going to send me to and endo.

So, I’m not sure what the outcome will be. I don’t seem to be a typical cushi as I don’t have a moon face and my weight gain has only been gradual and I actually feel fine. It was only at my partners insistence that I went to the doc as he kept saying my hump was getting bigger.

Does anyone have any advice on what I need to ask/say when I eventually see my endo?

Thanks
Pauline

ps, sorry, forgot to mention that I was only born with one kidney and also had an ovary removed due to a cyst.

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

Nancy, Pituitary Bio

Leave a comment

The pituitary gland

The pituitary gland

I had been sick for eight years before I finally got diagnosed with Cushings disease. My daughter went online and punched in hump on back and found out about Cushings disease. Then she went to sites like this one and found out what tests were necessary, which was very helpful, because not only did the endocrine doctor I saw think I didn’t have cushings disease, he also didn’t know what tests I needed. Thankfully he was on board with ordering the tests we asked him to order. 

In 2008 I had pituitary surgery. I went on steroids afterwards for over a year. I lost all of the weight I had gained. My doctor told me I was cured. I kept telling him I was still exhausted and I was sick all of the time, but he wouldn’t listen and told me I was just depressed. Since then I have been to three other endocrine doctors. I have done a few 24hr. Urine collections and an 11 :00pm to 7am urine collection. I also did 3 saliva tests which were normal. The night time urine collection was on the “high side, but still within normal range “.

I had an MRI which didn’t show anything either. My doctor said he would do more 24 hrs urine collections in a couple of months. He said he would also do another MRI. I haven’t had any luck with the 24hr urine collections, so I am not expecting much. I had pretty much resigned myself to the fact that I will be fat and sick the rest of my life because I am so tired of doctors telling me they can’t find anything wrong with me.

I gained 60 lbs. In 6 months after my doctor told me I was cured. At the same time I started gaining the weight back, I started to get the same symptoms I had when I had Cushings disease. Since then my weight continued to climb until I started taking cortisol reducing supplements. Now I am still sick, but my weight has stayed the same. I have days where I am so sick I don’t want to get out of bed. Most of those days I have severe headaches and back aches. I get colds and flu a few times a month. People don’t think it’s the flu because I get it so often, but I have vomiting and body aches, just like I did when I had Cushings disease. I think I may have cyclical cushings because the tests aren’t showing anything. I am wondering if someone could recommend a test or tests that are good for cyclical cushings disease.

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

%d bloggers like this: