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Judi L (judi), Undiagnosed Bio

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I have been seeing the endo for the last couple of weeks.  Lots of blood tests, saliva test, 24 hour urine test.  Thyroid scan, with nodules, thyroid biopsy benign, small goiter,and diagnosed with hashimoto.

Currently type 2 diabetic fairly controlled with Victoza, but very insulin resistance.  First blood tests showed high cortisol, high ACTH, second series of blood tests showed normal to high cortisol and still high ACTH.  Doctor said possible cushings.  Have had extreme fatigue, beard on chin.  Muscle and bone pain consistently.  Wake up with headache and extreme fatigue.Bone scan diagnosed with osteopenia.  Appt. with endo tomorrow to get results of 24 hr. urine test.  Salavia test said was normal.

Have problems with sleep, sleep all day off and on, or have days when I cannot go to sleep at all.  She said that I had the hump, muffin top, and belly fat, lean arms and legs.  Eyes are puffy all the time now.  Have problems losing weight even though I eat healthy all the time, and have excluded gluten, sugar, and going to go diary free.  Eat lots of vegetables and fruit as well as a little protein.  Have not had a mri or cat scan yet.  Probably will be next on the list.  Will post after my doctor’s appt. tomorrow and update my bio.

I have a lot of symptoms of cushings and she mentioned this with my second doctors visit after the first series of blood test, but wanted to do other tests to make sure.

Lisa (sagrae), Undiagnosed Bio

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Im a mother of 4 use to work full time till I got to sick and very tired.  Not sure what I have been to alot of drs. My tish flucuates my t4 is always in low range of normal, my cortisol tends to be very low in am and through the day. Ive done saliva test blood tests and urine tests. Im either boarderline or below and its been almost 2 years, 2 surgeries and alot of stress and financial hardship to my family. I had sleep apnea surgery first, then my ovaries removed (that proved the pcos i knew i had). Ive now been told I have reactive hypoglycemia. Been put on many different anti depressants to control my moods, since I never know from one minute to the next how I will be.

saliva test   reference range

1.6               7.0-10.0

1.9               3.0-6.0

.9                  2.0-4.0

.9                  <1.5

serum cortisol tested 1 month later

.6                 4.0-22.0

free testo

3                  2-45

 

t4 tested 1 year ago

5.0               4.7-13.3

t4 tested 2 weeks ago

1.11            0.8-1.8

tsh tested 3months ago

1.94            .40-4.50

tsh tested 1 year ago

4.14             .35-4.94

my acth test

20                6-50

lh test

58                10-54.7  keep in mind ive had a total hysterectomy 6 months ago

 

Im wondering how a dr can figure out what is wrong with me if everything flucuates all the time, and im wondering what is wrong with me? please anybody out there please shed some light on what this could be . Theres days i really feel out of my mind. Current medications started 3 months ago lithium 900 welbutrin 150 estradial 1mg provera 5mg

Jestina (jestina902), Pituitary Bio

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Hello there! My name is Jestina and I’m 16 years old. I just recently found out that I have Cushing’s from an endocrinologist in Washington D.C. It has taken three years to find a diagnosis. I have struggled with hormone issues ever since I was thirteen and my old family doctor originally diagnosed me with diabetes and PCOS. I didn’t think that it was unusual, especially because my mom has PCOS and diabetes runs in my family. My doctor told me that I was going through treatment for PCOS by giving me a pill to take. When I would take it, I would become very sick and I had unbearable stomach pain. It got to the point where I stopped taking it because it was hurting so badly. I was also not having any results. I still had unusual hair growth and I was starting to gain weight. This went on for a year.

About a year later, I started to face horrible back pain. I have scoliosis and my family, along with my specialists believed that it was caused by my spinal fusion. I started physical therapy when I was 15. I started to develop the “buffalo hump” and my physical therapist believed that it was the cause of spending too much time online. I thought that it was very strange though because I didn’t go online very much. I didn’t even have Facebook or any other type of social networking account. So, I went through about six months of therapy and I saw a small improvement but it didn’t last very long.

When I turned 16, I started to face even worse pain than before in my upper back. I went through multiple rounds of X-rays and spent two months home from school while my specialist was trying to find what was wrong but each time, he could never think of a reason for why I would be facing so much pain. I ended up going through a round of pain injections and it eased the pain enough for me to be back in school for the remainder of the school year. On my follow-up appointment after having the injections, my specialist suggested that maybe my pain had been caused by a hormonal problem. My mom decided to change family doctors and we went into her office less than a month ago. When my new doctor reviewed the medicines that I had been taking, she then informed us that the medicine that my old doctor gave me was actually for my diabetes and that it was the reason why I hadn’t seen any results. After I described my symptoms, (buffalo hump, moon face, unusual hair growth and weight gain, etc.) she left the room for about forty minutes to research. When she returned, she suggested that I had Cushing’s and that I should see an endocrinologist. She ordered a few rounds of blood tests and gave a referral to a doctor in Washington D.C.

My endocrinologist reviewed the blood tests and agreed with my family doctor that I most likely had Cushing’s. He ordered more blood tests and a 24-hour urine collection and they came back the way that he expected. I am now awaiting a CT scan for my surgery which should happen sometime in the next few weeks. I am hoping for great results. Apparently once my surgery is finished, I shouldn’t see anymore problems with diabetes, PCOS, or the symptoms that come along with Cushing’s.

Thank you so much for reading my bio!

Kristina, Undiagnosed Bio

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Hello everyone, My name is Kristina and i am 21 years old.I am so happy that i found this site because there are so little information about Cushing’s, especially real people stories. If not internet or tv i still wouldn’t know what is happening with me for a quite long time.

Hm i don’t know where to start, as a kid i always was very thin, and everything started changing when i was 11 or 12 years old i started to gain more and more weight, and after few years was diagnosed with hypothyroidism, i took medicine and lost my weight , but when i was 15 everything started changing again but much worse, i was always hyperactive, happy, enthusiastic, always got best grades and ect… i was always depressed, always asleep, feeling dizzy, everyday felt exhaustion, i even started missing schoool , didn’t even went where because i didn’t had energy to get up from bed and get dressed, and also with +66lbs i really didn’t wanted to show my face anywhere. And everyday everything get worse and worse, because of all this lack of energy and motivation i quit law studies, and then other studies, i don;t have energy to do simple house chores, my muscles always hurts, my head everyday hurts, i can’t sleep, i still get on weight every week almost, i have 800 kcal diet, and do some exercises, and weight still puts on… my hair is so ugly, my skin is very dry i got eczema that my skin doctor can’t cure, i broke my kneecap with very light impact i have many many other problems, and when i saw this on house md and mystery diagnosis i started my reseach on internet and library, i took very hard road that my endro would write prescriptions for all blood tests and MRT and now i am waiting for results and am very be anxious and have still many many questions.

I know that all cases are different but maybe someone could share, if after treatment or surgery, how hard is to loose weight, and not feel tired all the time? what to expect?

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