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I was dignosed with Cushing’s in April 2013 i had surgery in June 2013 to remove a tumor on my pituitary gland.
I have had some ups and downs with joint and muscle pains and emotional issues.After my 8 week check up they decreased my meds down but my levels were not normal at that time yet. I just recently had my blood checked again and my levels were really high in the normal range so they advised me that I could stop taking my meds all together which they say is a great thing.
I had been having some of the same issues and symptoms as when i first went to doctor that started coming up this is why i asked for blood test in first place and they are stating with meds and my own levels i am once again overproducing makes sense. However i am not feeling well at all severe muscle pains in knees and feel like i need a crane to get out of bed from being so stiff everyday.
I feel like i am once again an emotional wreck and have issues and nobobdy seem to understand this terrible disease and what it does to your body and one’s self. I have been married 23 yrs and have 2 beautiful daughters.
I gained over 45 pounds with all this I am down about 20 so far still have a ways to go for sure.
I really need some support with dealing with all this they say about 6-18 months to truly recover from this and feel so alone sometimes.
Judy wrote: “Monday I called to see how Alice Baker was doing and found out she had passed away Thursday. I had a long talk with Alice’s husband. He wanted me to tell everyone how much your cards and the flowers meant to Alice. He said “How wonderful, the flowers arrived from California, and Alice enjoyed them so much. She also enjoyed each card. ”
“Alice was a true fighter, she was more concerned about Cushing’s than she was the cancer. She was 69 years old.
“Mr. Baker asked me where he could send a thank you and I gave him CUSH address, as he also said their daughters wanted to thank everyone.
“Listen, these are sad times but really it is far better to know we are able to help someone. It is so much better for the person in need to be surrounded by love and prayers. I know she felt that. MaryO thanks again for sending those flowers and everyone for praying for Alice. I know she is looking down on us and pushing us on to do what we can to get the word out.”
After the birth of my daughter I was breast feeding. I stopped, but did not stop producing milk. My doctor told me it was normal. So, I ignored it, and the anxiety, weight gain.
Then I went and saw a different doctor. He ran an MRI and found a pituitary tumor. That was in June. He sent me to my Endo. She diagnosed me with Cushing’s and sent me to a Neurosurgeon.
I’m now waiting to have surgery. I am tired all the time (I have a two year old). I’ve gotten so fat I can hardly move. My face is red all the time, acne too. I can’t sleep at night, and have a hard time staying awake during the day. I’m getting so tired of being tired it’s not even funny.
It’s almost been a year now, since I’ve known, and I really want something done. I want to feel normal again. I want to have the energy to play with my daughter. I feel bad for her. It takes all of my energy just to take care of her all day. I’ve had some depression with this, mainly because of the way I look. I used to look good. Not now. I have major issues with anxiety, I shake all the time. It’s like my nerves are shot to you know where. But, I’m so ready to have this surgery and hopefully get on with my life. I feel like my life is at a stand still waiting for this surgery. So, wish me luck. God Bless.
Lenise
Note: Lenise passed away Wednesday, Oct. 2, 2002 at 23 years old, just after her surgery.
I’m new to cushings and just looking for some insight into this disease. I’m 67 yrs and for the last 15 yrs I have not felt good and problems getting worse with no explanations in the past. After discussing problems with my Dr I was tested twice for thyroid but tests came back normal.
I do have other problems due to surgeries in the past, I have adhesions, scar tissue etc. I am now type 2 diabetic since last 5 yrs.
I was admitted to hospital because of stomach pain in July this year, I had a cat scan which showed I had tumours on my adrenal glands. The left being the largest. I am waiting to see the endo surgeon in November but have just finished some tests I’ve blood, 12 hr and 24 hr urine specimen. No results as yet.
My symptoms are as follows.
Sweating mainly evening time around 9pm
Can’t sleep until 3am, but could easily sleep on afternoon if I allowed myself.
Changes in face. When I look in mirror I often think this does not look like me.
I have put weight on but not a lot. I have been noticing a lot of facial hair on my face.
I had very, very thick hair and it’s now extremely thin. I have a type of rash on my face which has got worse over the years. It seems like my legs and arms are much thinner than they used to be but my abdomen is getting larger, mainly my upper abdomen. I don’t have any stria but have similar marks on my legs especially around my knees. My skin marks easily. I also seem to have a small buffalo hump on my back. Seem to have brain fog but usually put that down to age. Feel tired all the time.
Some things I can maybe put down to age.
I would appreciate any comments from members. I will let you know when I get results.
I’m 31 years old and feel like I’m 80. I’ve been ill for so many different things over the past couple of years.
In the past year alone I’ve seen 5 doctors who couldn’t tell me the time. They made me feel like I was crazy. Even when I got double vision in my right eye and had to wear an eye patch for 3 months. No one could figure out why. I still have vision disturbances but after two med packs of steriods the double vision went away.
I came across this web site last week and connected with so many things from other people. I printed off the sheets and took them to a new neurologist I was scheduled to see. To my amazement he completly agreed with me! He said it was very likely I did have cushings and/or PCOS.
He scheduled an appointment for a Endocrinologist that specializes in this area and I am to see them Tuesday. I will update from then but I want to say I’m grateful for this site because it gave me some hope of an answer. I’ve been so miserable. I felt like my soul was trapped by my body and I didn’t even have the energy to make it better.
If you’re doctor makes you feel crazy, find another one. I know even with insurance it’s expensive but help is imperative.
Here’s a list of my symptoms:
-hump on my neck (have had for a while and thought it was from bad posture!)
-cyctic acne
-hair loss
-hair growth where it should not be
-loss of libido (I’m 31 this is so not right)
-fatigue
-muscle weakness
-back pain
-fat in the middle
-moon face
-horrible stretch marks
-no period for over a year (my last gyno told me I was just lucky)
-vision disturbances
-depression
-anxiety
-hypertension
-extremly low cholesterol
-hard to breathe, like there’s somthing heavy on my chest
-reoccurent kidney stones
-cyst on ovaries
-frequent bathroom visits
-terrible constipation
-swelling of legs and feet
-water rentention
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.
Dear endocrinologist, I need to say something for all the people like myself with endogenous mild episodic Cushings that are dismissed there’s some patients who may not be strong enough to speak up or even advocate for themselves & know what tests to ask for. Some will just give up and accept this as their fate and have a horrible quality of life & die way too soon from the terrible things this illness does to your body. Some may take their own lives (depression, anxiety, self doubt is a very real & serious symptom of this illness). I heard that voice in my head, “if one more doctor dismisses me, I am ending my life! I can’t live like this anymore!” These are very important things to remember.
1. Not every person has all the symptoms especially mild Cushings but we are still just as miserable.
2. Mild episodic Cushings may not show as elevated cortisol on UFC or midnight salivas. We have lots of lows & some highs that are sometimes difficult to determine because it could be just a few hours of high cortisol in a day & the rest normal or low.
3. There are tests like the 17-OHS that can show abnormal cortisol levels & should always be done on the same 24HR UFC urine.
4. Don’t blow off someone by just doing a low dose dex suppress, that test is ONLY TO SHOW LOCATION OF THE TUMOR! If you suppress, then it points to pituitary, if you don’t it points to adrenal.
5. A Buffalo hump means Cushings more often than it means just a normal fat pad due to a persons fat distribution!
6. Put down the mouse & step away from the computer & examine me!
7. Actively Listen to what I am saying to you!
8. Morning cortisol serums are usually useless because mild episodic Cushings patients trend to be in a normal or low during the morning & mildly to moderate high in the late evening to early morning hours.
9. A midnight cortisol serum is very helpful to determine if the patient has Cushings, IF they are showing symptoms of being on a high.
10. Multiple testing is needed to rule out Cushings. Stop dismissing Cushings as a diagnosis with only one round or even four rounds of tests!
11. These patients are looking to you for help in a very scary time, stop giving the exercise, meditation speech! It only is an insult to us. Most Cushings patients actually don’t eat enough calories & restrict trying desperately to loose weight.
12. Mild episodic Cushings patients can loose weight so don’t disregard if they do because it will come back on even with no change to activity levels & caloric intake.
13. It should Not take 3 years or longer to get a diagnosis of Cushing’s!
14. It should NOT take 4 + endocrinologists pushing off to the next & the next to get a Cushings diagnosis!
15. Stop immediately assuming we have PCOS! Test for it before you pigeon hole a patient! And realize you can have both PCOS and Cushing’s.
16. Stop tossing pills at each individual symptom, look at all the symptoms as a whole. When dealing with Cushings, the only true reverse of the symptoms is surgery.
Part 2
In addition to the 16 items above, she added:
17. You can have normal ACTH levels and still have Cushing’s. “Patients with ACTH-secreting tumors will either have a normal or elevated level of ACTH.” – Dr. Findling Dr. Findling is an endocrinologist and Professor of Medicine at the Medical College of Wisconsin. Dr. Findling has been dedicated to the clinical evaluation and care of patients with Cushing’s syndrome for over thirty years. He has over 100 publications and was a co-author of the Endocrine Society guidelines for the diagnosis of Cushing’s syndrome.
Part 4, September 25, 2021
This is just a quick update. I am not in a good head space. Being denied a much needed surgery because of irresponsible people are not following cdc guidelines, makes me very very very very upset!
Every day a new issue pops up, IIH could make me go blind, my bones could break, my muscles are weak, my mental health is poor, my heart is enlarged, my brain is in atrophy!!!
Hi , my name is Sylvia. I’m a 36 years old mother of two.
I am not one to go to doctors. Usually I go about every 4 or 5 years. I last went to a doctor in 2008 and had a battery of test. To this day the only dx i got was anemia. I had lab,ct,mri,lumbar puncture, and other tests with no answers.
Recently I went to an urgent care due to feeling bad. Thought i had a kidney infection. Had trouble urinating, feet swelled up, and burning in my sides. They told me I had high blood pressure no kidney infection. Also my lab came back high whiteblood count. I’ve never had high bp but elevated white blood counts for several years. Every time I have lab its high. They had me repeat the lab 2 days later and it was higher. So then i did a 24 hr urine test and my creatine level was high.
So they sent me to a kidney specialist now he is wanting to rule out cushings. I had never even heard of it before, I went today for a renal ultrasound and in 3 weeks i will do a 24 hr urine cortisol test. Then i will see him the next week. so 1 month till I hear anything.
Let me just give you my history of symptoms: elevated white blood counts when i have no cold or infection recent high blood pressure swelling in feet, legs, face, and hands gained 50lbs this year have battled weight for years unable to lose more than 30lbs ever and that is with extreme diet and excerise mood swings very irratable depressed extreme anxiety sleep deprivation can go for days without sleep never really noticed the hump on the back of my neck as abnormal thought i was just fat and that was part of it but reading about cushings makes me wonder if its a symptom.
I haven’t been dx with cushings yet but all signs point to it. I feel weird saying this because i don’t want this but for years i’ve not had an answer and in a weird way it would be a relief to know why i always feel bad, fatigued, no energy. I’ve always just said well its because of the weight. Obese people don’t have energy. But now It’s affecting my whole life.I can’t do things with my kids or be close with my husband who i love to peices. I just want an answer so i can be better. sorry thisis so long but its a decade of issues and hard to get it all out .
thanks for reading my story.
~~
2)
My name is Sylvia i’m 36 married for 17 yrs with 2 great kids.
I’ve never been one to go to the doctor.I have to be about dead to go. I haven’t seen a dr. since 2008.
Last month i started having some kidney problems and decided to go to a urgent care clinic thinking it was probably a kidney infection. I had went on a trip over the labor day holiday and went about 8 hrs from where we live.
i have noticed when i ride for a long time or walk long distances my whole body would swell up. by the time we got home my feet were 3 times the size and i couldn’t pee. so the urgent care did test i didn’t have a kidney infection but my bp was high and whiteblood count high also.
i have had a high white count for years and nobody could ever figure it out other than anemia. two days later the dr called me to repeat the lab and the whitecount was even higher. i also had a 24hr urine test that came back abnormal high creatine level. so they referred me to a blood specialist and kidney dr. went to the blood dr. first which i had already seen in 2008 for the anemia, they said i was ok probably just a person who runs a high whitecount naturally. so that didn’t help me. but i did ask for them to order a mamogram and found a nodule so i go for a biopsy next week. so maybe it was a higher plan to go there. hoping for a good result.
then i went to the kidney specialist and he is the one who brought up cushings. i had never heard of it before. and at the time i was so overwhelmed that i didn’t even ask any questions went today for a renal ultrasound and in three weeks i redo the 24hr urine to check the cortisol levels. i didn’t know about cushings till i got on here.
i have just about all the symptoms. i’ve gained about 50lbs this year and have been under an extreme amount of stress. had a family tradgedy and figured all the anxiety and depression was from that but i’ve had bouts of depression in the past. i also have swelling in my hands feet legs and stomach. headaches, joint pain, recent high bp, mood swings, irriatability, no sex drive, panic attacks and severe fatigue. and i never noticed the hump on the back of my neck as abnormal till i read about it. i thought it was from the extra weight. i have gotten up to 315lbs. i can’t find clothes to fit anymore and my stomach makes me look pregnant. my self esteem is low and i’ve always been very social and now i don’t want to be around people at all.
i’m really hoping i can find out whats wrong with me. i just thought i was obese and fat people don’t have energy so they feel bad. i don’t want to have cushings but i’ve felt bad for so long it would almost be a relief to just get diagnosed so i wouldn’t feel like it’s all in my head.
Robyn was diagnosed with Cushing’s Disease in 2004 and had 2/3 of her pituitary removed. This was after 8 years of going from doctor to doctor and thinking she was going to go crazy.
She writes: “Anyway, after my surgery in February of 2004 I had probably a good three years and then I slowly started feeling bad again. I am now going through what I did 8yrs ago. My endocrinologist doesn’t think that the Cushing’s is back because of my tests being borderline. He told me that he thinks I am obese and I need to have stomach surgery. I seriously cried for days and told him that I disagreed and I wasn’t going to give up…I need support in following through with the tests that I need to. Like I said I have been putting them off because subconsiously I am so worried that they will tell me that I don’t have the Cushing’s back and I will have to live like this the rest of my life. Tired of being so heavy and uncomfortably large, sweating to the point of dripping, aching all over and not having any desire or motivation to do anything.
I’m praying the tests come back showing that the tumor is back and they will go in and take the rest of the pituitary out.”
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