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Victoria (Victoria), Undiagnosed Bio

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Hi everyone! I would first like to say how happy i am that this website exists it makes me feel so much better that others have gone through what i am currently experiencing and have made amazing recoveries! I am 19 years old and just finished my first year at college. This past semester was one of the hardest times of my life because not only was

I am 19 years old and just finished my first year at college. This past semester was one of the hardest times of my life because not only was i experiencing the internal manifestation of cushings causing extreme fatigue, anxiety, headaches, and muscle pain my appearance seemed to drastically take a turn for the worst bringing my self esteem to an all time low. My physical symptoms include an extreme moon

My physical symptoms include an extreme moon face,striae on breasts and calves, excessive hairiness, buffalo hump, acne, and bacne. I felt disgusting and sick all the time. i isolated myself from everyone because i was so embarrassed and sad because i felt like my femininity had been stripped away from me and i just was not myself. I began cutting to cope with my extreme sadness

i am now home for the summer and last Wednesday went to the doctors to finally get the diagnosis of cushings because i know for a fact that i have it. i first showed him my back and told him about my other symptoms. he then asked me if i was exercising and i said no because i never feel well. he said he thought that

he said he thought that i just needed to lose weight and that would help with my back and other things. he did notthink it was cushings because my buffalo hump was not pronounced enough but thankfully enough he said he would do a urine test just to be sure amongst many other blood tests. Now i am not a very large girl cushings has not manifested itself in me that has really effected my weight but it has effected everything else.

Anyways i am still waiting for the results of my blood work and urine test, i really feel that i will get the diagnosis there is no way that i do not have this. i just want to go back to my old self and enjoy college with my friends.

i am so scared and hope to support others and find support through this amazing site! Thank you 🙂

 

 

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Sandy (KindredSpirit), Pituitary Bio

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pituitary-gland

I have been married for 33 years to a wonderful, patient man. Mother of 2 grown boys. Will be a gramma in May 2017.

I have been on the health journey for a number of years. It was a friend who gave me the name of Cushing’s and had I been tested. Tested?! Never heard of it.

Went online and saw the symptoms. Felt that the missing piece of the puzzle was found.

Made an appointment with my doctor in Sept. 2016. After initial urine test and blood work was sent to endocrinology.

Several tests later received confirmation just before Christmas. Awaiting MRI.

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Kim H, Ectopic Bio

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golden-oldie

 

I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986.

However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.

My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.

Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.

Update: May, 2007

It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.

For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.

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Ryan C (Awesomenatious), Pseudo Cushing’s and Chronic Fatigue

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undiagnosed2

 

I am trying to find help and an answer. I have had urine tests and a suppression test using Dexamethasone. This text was done twice because the first time I still had high cortisol. The second time a larger dose was given and suppression occurred.
Interestingly for a couple of days after the test I felt great. But then I crashed and felt terrible and then levelled out again at my usual fat, sweaty self.

No investigation to my pituitary, no further tests other than a picture of my adrenal gland (which was taken because I was being treated for diverticulitis and issues with my digestive tract.

So here I am. No doctor is willing to take on my case, I still have hyper cortisol levels. But I’ve been told it’s because I’m fat. And

I’ve also been told that high cortisol causes weight issues. So currently I feel like I’m being told I’m fat because I’m fat. How is that helpful?
I have been to the dietician like I was advised. Weight loss occurred but was super super slow.

I have been to CBT cognitive behavioural therapy because that’s apparently something you HAVE to do when diagnosed with Chronic Fatigue.

So here I sit with a Pseudo Cushings and chronic fatigue diagnosis and no help and STILL high cortisol levels.

I did visit an Osteopath, who said he though I had Adrenal Fatigue. And adrenal supplement under his supervision for a few months which helped slightly but I had to stop because it’s dangerous to use for prolonged periods.

But hey, isn’t Having excessive cortisol for a prolonged time even more dangerous ?

I just don’t understand why I have to become an expert in cushings and hypercotisol before any GP doctor will listen to me and help me.

I felt frustrated and let down.

Ryan

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Raquel O (Raquel8a) Adrenal Bio

2 Comments

undiagnosed2

 

I’m not sure how long I’ve had Cushing’s. I think it’s been a slow progression for about 20 years.

In April my father passed away and we were on our way to Church for his mass. We got smashed from behind turning into the Church’s driveway, we ended up in an ambulance. At the hospital they did a full body CT scan. (I would have never gotten one if the accident never happened.) They found a growth on my adrenal gland. That started the ball rolling. I believe my father was responsible for helping me discover the problem.

I started looking on the internet about adrenal tumors. It talked about Cushing’s. Each and every symptom they described I had. It explained soooooo much. I thought I was going through early menopause. I was suicidal, and severly depressed, on 2 different medications to help. I chalked everything up to being “fat”. I didn’t go to the doctor because I didn’t want to hear “you just need to lose some weight.”

I went to an endocrinologist, she started me on the first urine test and some blood work. Two weeks later, I went back to get the results. I told her about Cushing’s and that I had all the symptoms. She said the results were abnormal but it could be a number of different things. She wanted to repeat the urine test and said that I SEEMED to be convinced that it was Cushing’s Disease. Needless to say I felt pretty stupid. When the results came back guess what?

After the accident the tumor seemed to have gotten aggravated. I was having a lot more confusion, loss of focus, etc. I chalked it all up to the accident, maybe it was a concussion. Since then it’s become worse. I get frustrated and depressed because I’m experiencing a lot more forgetfulness, and confusion. My depression meds are holding me up but barely. I’m tired all the time. My husband sometimes, I feel, doesn’t believe me and gets frustrated. My kids are always asking me if I’m okay (and usually the answer is no). I don’t want them to grow up remembering how I was always so sick and tired.

My next step is to get the tumor removed. The neurosurgeon is busy and my tumor is not life threatening so I had to wait a long time (couple of weeks) for a consultation. I finally saw him an now I’m waiting for the ENT to get back from vacation to set a date. So, I’m in limbo. Not helping!

My next step is to get the tumor removed. The neurosurgeon is busy and my tumor is not life threatening so I had to wait a long time (couple of weeks) for a consultation. I finally saw him an now I’m waiting for the ENT to get back from vacation to set a date. So, I’m in limbo. Not helping!

After the surgery am I supposed to be “normal?” I’m afraid of “normal.” I don’t know what it’s like to be “normal.” Will I be a different person? Will I no longer be fat? Will I get rid of the hypertension, and diabetes? the redness everyone thinks is sunburn? will I be able to get into a standing position from the floor? I’m very FRIGHTENED of the “normal” that I’m supposed to become.

The surgery, no problem, my dad’s watching over me. I’m convinced he’s responsible for finding the tumor and will help me through.

Thanks for taking the time to read this, although this bio only scratches the surface.

 

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Sheara (sbailey), Pituitary Bio

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golden-oldie

 

A Golden Oldie originally from Tuesday, October 7, 2008

I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.

I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto’s Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let’s check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.

They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields…they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.

Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.

In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing’s as a possibility. He had me repeat the salivary testing for 5 days…all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.

I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.

So I am home on the mend 1 week post op…glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!

Maybe it is my imagination, but I already feel like my “old self” back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.

Thanks for listening!

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Kelsey G (kelcann44), Undiagnosed Bio

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Hi there! I am a 24 year old female from New Zealand. I am curently awaiting my last test to prove 100% if I have cyclical cushing syndrome or not.

I went from crazy happy boucing sport ,dance and hunting crazy tom boy to at age 12 have 8months solid of tonsitis once i got them out i never recoverd propley and turns out i had galandular fever which effected me really badly they belive it is where my chronic fatuige comes from and other things.

From 2008 to may 2011 i was living your normal teenage dream making up for being so sick in highschool i could makeup for that and build some.special groups of friends amd plan partys and holidays….untill may 2011, I was standing behind the counter at work and there was a niggle at my side going down my legs and that soon turned into full blown cramping that had me colapse amd feeling like i was being kicked woth boots. They rushed me to hospital and with pain medication it became a very sharp.niggly pain and with pain came vommiting ( i am not also diagnosed woth cyclical vommoiting syndrome
After a week they xrayed my side and said i was very constipated but they tried and tried to clear it amd they couldmt…..this episode lasted 8 weeks and i tend to have them every 6months of so ranging from 8weeks to 16weeks eventually i have been picked up by an endicrine professor who has done some tests with abnormal results the last one being they 30day salivitoryswab test

I next have the urinary test but i canot have that untill im out of pain and having bowel motions ( this had been week 5) just wondering if anyone else has had bowel troubles with theirs. The endicrine man is shocked that i have been missed for soo long when i have 99% of side effects ( i mever knew i just thought i was gettimg fatter and my chubby cheeks had decided to fatten my whole face and my old size 16 pants and 16 top. Has now turned into 16pants and size 24 top!

I wish i had a answer because the life i am living is killing me i am a hollow shell of the person i was i have no life dreams or ambitions its one day at a time or getting sick again will ruin it (and i beyond love traveling ended up in ireland hospitala and laid up 2weeks bedrest for sinus infection and pnemona and a close to bursting drum…i camt plan holidays now as i cant save the money my bugets blow away when im out of work for 16weeks !

Luckily my mum.andndad are there for me but i see how me being so ill is breaking their hearts and puting them under so much stress along with my brothers.and my neices and nephews . My big boy 4 year old nephew breaks down everytime he sees me in hospital and the needles in the hand must.hurt me and that the hospitals turned aunty telsey into a quiet ghost who dosnt love me and play with me….smashes my heart into a million peices hearing that but it is true and when im good im.rediculous i party like a rockstar and bugger the health because im done with living the shadow ghost of.me!! đź’–

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