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Amy (Amybtru), Pituitary/Adrenal Bio

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I am a 45-year-old female I have five children three of which are adults and two that are 17 and 16 years old.

Around 2018 I started to develop a very round face plus I had a lot of weight gain in August 2019 I had an MRI of my brain and there was a pituitary microadenoma 6 mm I had a second MRI in August 2020 and I still had the pituitary microadenoma well then December 2020 I had an MRI and the microadenoma was gone sooooooo I said to my Endo maybe we should take a look at my kidneys

well I just found out about those my right one has a 8 1/2 mm nodule on the adrenal gland and then my left kidney has a some type of cyst on the superior pole of the kidney And some kind of lesion I’ve been referred to a urologist to take out possibly my adrenal gland my endocrinologist he did notate that he was going to be considering adrenalectomy as possibly the Best treatment along with the urologist I just got referred to the urologist I have to call them back on Monday to set up an appointment

I am I am nearly 400 pounds I have lost all my hair I’ve lost my fingernails twice due to fungus ravaging my body when I am sick weak such opportunistic little suckers and I don’t eat very much out of the seven of us in this house I eat less than anybody does no matter how little I eat I just keep getting bigger and bigger and bigger and then I got the skinny legs and I’ve got fins skin that cracks open all the time for no apparent reason and then take forever to heal

I had one midnight salivary test will come back 253 I had a second salivary come back 127 but four months later they messaged me and said it was a mistake the 127 was not my results my result was normal little bit shady I asked how and why this could’ve even happened four months later and the doctor says he does not now s

o then my next cortisol test was with the 8 mg dexamethazone suppression and it took it down very low so I’ve been with this endocrinologist since August 2019 and he’s tested my cortisol three times and my urinary cortisol has collected one time there was nothing cortisol related with my urine and also cortisol blood tests that were within normal limits as well so he says I have intermittent Cushing’s disease

Cushing syndrome yeah I don’t feel that he is vigorously done anything to treat me do more testing do more salivary‘s do more anything if I wasn’t so deep in this already I had to wait four months to see him back in April or August 2019 I’m this far in and to back out now and try to find an endocrinologist would be a total pain in the ass my whole body has changed my mind has changed my memory my vision my confidence

I have a very hairy face now and it actually connects all the way around to make it go to you now so that’s wonderful and my stretch marks have gotten deeper and more severe on my abdomen and sometimes even feel like they could crack open him as I’m prone to fungal infections when I am not in good health I have ringworm on my stomach I have ingrown hairs all over my chin that can’t get through the scar tissue from a previous health issue that I can get into later so the hairs get stuck Behind the scar tissue and just keep getting more ingrown and More ingrown.

I am basically paralyzed and I’ve been telling him this for over a year I feel like I am going to be paralyzed I feel like my legs are not working my muscles are not working I have such weakness and such pain in my body it is unreal it’s inhumane in my opinion and awls I can take for it is Tylenol

I cannot believe in the year 2021 once they killed a bunch of people off with opioids they never thought hey maybe we should develop something else for pain real pain that works idiots!

There is a lot more to my story that I hope to get to share with people that have gone through this living hell and I am in desperate need of support in guidance I have no one to talk to you about this that knows really anything about it so I’m hoping here I can find support.

FIND SOMEONE TO SAY “OMG ME TOO” just any connection and advice I hope to find here. I’m afraid I’ll die before they finally decide to take action.

Kathryn (Kathryn), Pituitary Bio

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Originally posted February 7, 2008

Hello,
My name is Kathryn and I am new to the site. I know it sounds silly but I feel a bit shy and embarrased about introducing myself. This is probably because I have spent so much time over the last eight years being very upset in social situations due to my appearance and inability to think clearly. Cushings has ruined a lot of my life and left me quite worried about the future, but I am trying to come to terms with it.

On the bright side I have been very lucky to have very uncomplicated surgery for removal of my pituitary adenome. I am on replacement of cortisol, thyroxine and soon to be on growth hormone. With a bit of luck I will soon be feeling better.

Unfortunately the excess cortisol has been masking severe osteoarthritis and so I will soon be going for a hip replacement.

 

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Kathleen (irishlass), Pituitary Bio

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golden-oldie

 

Originally from April 30, 2008

 

I am 65 yo, single, and live alone.

I have a pituitary adenoma. December 5, 2007 I had a pituitary resection, transphenoidal. The adenoma was approx 2.9 cm. A recent MRI revealed a good portion of the tumor remains.

I wear a medical alert bracelet for “Adrenal Insufficiency” and take 20 mg hydrocortizone daily, in divided doses.

The biggest problems I deal with is lack of energy, and inability to lose weight. I’m fifty pounds overweight. Has anyone ever been successful at losing weight?

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Neale O (NealeO), Pituitary Bio

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pituitary-gland

 

I was diagnosed with Cushings Disease in September of 2015.

I used to be skinny. I was 160 lbs dripping wet. I had a thin face and exercised regularly. In fact, up until 2 years ago, I was doing CrossFit every morning at 5AM, and was pretty good at it!

I guess about 5-6 years ago, I started putting on weight. It started with what I thought was just a beer belly. I was dating a great girl and we went out a lot to eat and drink. I figured I was just getting fat and happy. Fast forward (got married to her) and we started to live our lives together. One day (2012) I was going in for a routine physical and was going over some things with my PCP. He suggested we do a finger prick to check my Glucose levels. The sample showed a 567. He was astonished, and immediately admitted me to the hospital. I ended up taking 5 IV bags as I was severely dehydrated. My PCP then schedule me in for the next day so that he could tell me I had Type 2 Diabetes (runs in family). They started me on drugs and insulin injections. So there I was, being treated for Diabetes (the Sugars as they call them) and High Blood Pressure (HBP).

This went on for a while and my wife and I decided to moved to Florida. In the mean time my undiagnosed Cushings was starting to rear it’s ugly head. Big belly, stretch marks, limb atrophy, fatigue, major depression, reduced libido, moon-pie face, thin skin and bruising easily. The depression caused a lot of issues with my marriage and we ended up getting a divorce. I moved back to Baltimore for support from my family.

I worked at my uncles shop for about a year, then was offered a new job with a great company and I jumped at the chance. By this time, the atrophy in my legs had started to really take effect. The job ended up being too physical for me and I had to resign after 1 one month.

I decided to see a new PCP as I was not happy with my previous one. Within the first 20 minutes of our initial consult, she recognized the Cushings symptoms and quickly referred me to the Endo Department (Dr. Taylor) at Mercy Medical. She had me do a bunch of blood work and urine tests. The cortisol numbers were off the charts.

She then referred me to Dr. Salvatori at John’s Hopkins Hospital (JHH). I was very lucky as she got me in there quickly. After speaking with him, he thought I had a Pituitary adenoma based on the crazy ACTH levels. We did and MRI, and an IPSS. The IPSS showed it was secreting from the right side mostly. The left had some high numbers, but nothing like the other side. In the MRI, they could not see the tumor.

Dr. Salvatori suggested on more thing before resorting to surgery. I am to have a “wet MRI” in January., 2016 This should give a much clearer scan. He also started me on Ketoconozale.

This is all happening very fast (diagnosed Sept 2015), and I am looking forward to the upcoming treatments.

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Susan W, Pituitary Bio

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A Golden Oldie

After 2.5 yrs of testing, I was diagnosed with Cushing’s (which was un-diagnosed for over 20 yrs).  My Pituitary Tumor was removed on 10/20/11.

My surgeon has recommended Radiation/Gamma Knife treatment which will be discussed at my post srgery checkup 1/10/12.  I also have noduals on both my adrenals.

Other symptoms:  obesity, diabetes, high blood pressure, high cholesterol, muscle weakness, sleep apnea, fatigue and depression.


Susan submitted a second version of her bio.

My testing -> diagnosis -> surgery journey took 2.5 years.  I have always had a weight problem.  All my Doctors ever asked if I was interested in a liquid diet, liposuction, gastro bypass or go to Weight Watchers, and eat less.  But when I reached 375 lbs I knew something had to be done.  Things were way out of control.  I could no longer handle this by myself, I needed HELP.

I had seen comercials on TV which talked about excess Cortisol leading to excess belly fat .   So, I asked my Primary Care Doctor if she could test my Cortisol level.  She just laughed and said I would have to go to an Endocrinologist (Endo).  She did not even provide a referral.  Through my insurance company I found an Endo.  On 7/3/09,  my first appointment with the Endo, she agreed to test me but felt I just had a fatty liver.

When the test results came back, they showing excess Cortisol.  This started a series of saliva, blood test, 24 hr urine, MRI, and CAT Scan tests.  Then I was referred to another Endo Dr Findling in WI (I live in IL) for another opinion and the IPSS test..  (Dr Findling said I looked like I had Cushings for over 10 yrs.)  This was followed by Ostrascam and PET Scan.  Armed with the diagnosis of Cushing’s Disease we were off to get a surgeon.  The first doctor I seen in IL was a bust.  Then I was referred to Dr Oldfield in VA, who performed my surgery on 10/20/11.

Now in recovery, I still get weak, tired and sleep a lot.  I have been using a walker and cane to get around.  Interesting to see that other Cushings also have problems with mobility, aches and pains.  I hope this gets better.  I have follow-up appointment 12/21/11 and 1/11/12 with the Endo and surgeon.  I am off my High Blood Pressure and 2 of the 3 Diabetes meds.  I have lost 30 lbs in the 7 wks since surgery.   I can;t wait, 1 more wk before I can start swimming again.

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Jeannine, Pituitary Bio

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A “Golden Oldie” from 2008.

Hi everyone. My name is Jeannine and I am an old member of this site. I haven’t been on it since 2003 because I thought my problems were over. Obviously, this is not the case.

I am a 49…soon to be 50. I’ve been married for 29 years and have two sons(26 & 20) and one daughter-in-law. After 3 long years of being told I was crazy and lazy, and searching for answers for my rapid weight gain, fatigue, and lots of other weird symptoms, an adrenal adenoma was accidentally discovered when having a CT scan before my hysterectomy.

After initial testing, I only had very mild elevations in a few tests and negative results in most others. I was told to wait and watch. As the year progressed, I became sicker and heavier. I begged, demanded and finagled tests, still only to be told I just “wasn’t sick enough.” One year and 100 lbs. later, my 24 hr. urines were finally high enough to convince the dr. to do surgery.

My test results were never very clear and I was never given a diagnosis, even after surgery. The weird part about my test results were that I tested positive for a pheochromocytoma as well as for a cortical adenoma. I had my left adrenal gland removed in April of 2003. It was not a pheo and the pathology listed “adrenal cortical adenoma”.

I never had to have any hormone replacement, and aside from not losing the weight and becoming insulin resistant, I was cured. I couldn’t lose the weight on my own, so I joined Optifast, the medical liquid diet program. Over the course of about 6 months, I lost 60 lbs.

Unfortunately, as I started to re-enter normal eating patterns, the weight began to return. There was a steady weight gain almost every week for the past 12 months. I have now gained 50 lbs back. Aside from gaining weight, A few months ago, I started to feel badly again. I immediately had my endo send me for 24 hr. urines and basic blood work, but everything was negative.

Then, a few weeks ago, I went to a new opthamologist to have my eyes examined. I mentioned to him that I sometimes got weird visual symptoms with blurry lines in my eyes. I had first noticed them a few months after my adrenal surgery four years before and they had continued to occur sporatically ever since. I had my eyes examined twice during these last 4 years and nothing was ever shown to be wrong. The new dr. suspected occular migraines, but because of my history with the adrenal tumor, he decided to do a cranial MRI. Lo and behold, I was just diagnosed with a 3-4mm pituitary tumor. So…..here I am, back on the boards looking for answers. I have an appt. in three weeks to see my endocrinologist and the testing will begin.

While I really don’t want to be here, it’s nice to be able to come “home.”

 

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Alex, Pituitary Bio

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After long and tiring process was diagnosed with Cushing disease in June 2011.

Had a surgery to remove pituitary tumor in July 2011.

Remained on the cortizol for 18 months.

If you live in New York metropolitan area and have a pituitary tumor and would like to ask some questions or need suggestions, please email me.

I have seen the worst of this disease, but was able to make it through. I was lucky to have right doctors (neuroendocrenologist and surgeon).

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Pituitary Tumor, Helping Others Comes First

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He said she needed to start focusing on looking after herself a bit more in her long journey with tumours of the pituitary gland.

“I have a tendency to do too much for other people,” Mrs Dines said.

“It’s just me. It’s in me, it’s what I do.”

The altruistic devotion is central to her being nominated in the community spirit category in the 2013 Pride of Australia awards.

“There is no end to the depth of Kellie’s passion for people in need,” her testimony said.

“She inspires everybody she comes into contact with to be the very best they can be.”

Pituitary and pineal glands

Pituitary and pineal glands (Photo credit: Wikipedia)

Mrs Dines, 40, is the wife of Brad, mother of Carter, 10, and Hunter, 5, and has lived at Teesdale for two years after having spent her formative years growing up at Wallington and attending Geelong’s Matthew Flinders College. She spent 17 “hideous” years battling mystery ill health and receiving all sorts of diagnoses before the discovery of a non hormone-secreting tumour surrounding her pituitary gland, at the base of her brain.

The pituitary gland secretes hormones that influence the workings of many other glands.

She has twice undergone delicate surgery attempting to remove the tumour and now it is growing around her carotid artery.

Mrs Dines’ community devotions have ranged from volunteering at three consecutive Australian International Airshows to inspiring a Black Saturday bushfires appeal that generated two truckloads of food and goods for fire victims, and volunteering as state co-ordinator for the Australian Pituitary Foundation.

After having shifted to Teesdale, she started co-ordinating money-raising efforts for the community’s pre-school and primary school and ran money-raising events for a local single mum contending with breast cancer and a family that lost a child.

She said nomination in the Pride of Australia awards was humbling. “But it’s not why I do things,” she said.

Nominations in 10 Pride of Australia award categories close on Tuesday.

From http://www.geelongadvertiser.com.au/article/2013/07/12/369100_news.html

Dr. Dori, Pituitary Bio

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The author, Dori Middleman, M.D. is a child and adult psychiatrist in private practice in Merion, PA. She has a musician/conductor husband and two children. She was diagnosed with a pituitary tumor causing Cushing’s Disease in November of 2001.  This Golden Oldie was last updated 06/19/2008.

~~~

December 28, 2002

Dr. Dori Middleman

HOW TO HAVE FUN WITH A BRAIN TUMOR

A Pituitary Party with a pituitary-shaped cake, complete with tumor of a different-colored icing, a pituitary hunt for the kids, a raffle to benefit the Wellness Community (a cancer support group), and a contest for the most creative object to be inserted inside my head in place of the removed pituitary tumor were ways in which I distracted myself from the terror of brain surgery. I hired a story-teller, who wrote pituitary stories. I bought the game, “Cranium”, to give as prizes for the winner of the replacement-object contest, and my caterer created pituitary-theme foods: pituitary pasta, cerebral cucumbers, and had a cauliflower simulating a brain decorating the table along with a scarecrow who displayed the sign, “If I only had a brain…”

My pituitary party invitation read:

As you may or may not know, I have been diagnosed with a pituitary adenoma, a small brain tumor, and am having surgery on April 3rd. I have decided that one thing you can do for me is help me have fun with my brain tumor. Traditionally, brain tumors have been viewed as undesirable, somewhat dreaded, and even potentially life-threatening. They’ve gotten a bum rap, in my opinion. I think they give life a purpose (survival with a few brains intact) and give their bearers something to talk about, but better yet, laugh about.

Dan Gottlieb, a Philadelphia Inquirer columnist, in his April Fool’s column on the importance of not taking oneself too seriously, gave me and my party a notable mention, resulting in all of Philadelphia knowing about my surgery and many expressions of support and concern.
Indeed, contemplating death and disease is not the way I most enjoy spending my time, although I did a fair amount of that too. But throughout my illness and recovery, I have attempted to make the most of the cards I have been dealt.

Other health-promoting strategies I have used included:

regular mass e-mailings to my close friends to keep them apprised of how I was doing so they could best offer support;
contacting everyone I could think of for recommendations and information on doctors
finding and conversing with fellow patients on-line in the chatroom for people with my illness, Cushing’s Disease
using hypnosis, yoga, exercise, acupuncture, massage, Gestalt, and energy-work as adjuncts to my medical treatment
re-entering and using psychotherapy to support me emotionally through the process of illness and the stresses of medical treatment (In Gestalt therapy, I spoke to my tumor and my pituitary and came to understand their function in my life: I had a hypomanic pituitary mimicking my own sometimes hyper-functioning mode of living.)
joking with people as much as possible about brain tumors to facilitate comfort of myself and people providing my care from hospital registration personnel to my brain surgeon
carrying with me at all times the small objects people offered to me as brain-tissue replacement
wearing a donut-like pendant covered by a symbol of a healer as a reminder of my brain with a hole in the middle healing

Unfortunately, my surgery was unsuccessful, and I faced a decision between a second surgery or radiation treatment. I did not find this funny. In fact, I was pretty demoralized and said so in an email to friends and colleagues, again inviting humor. One of my colleagues placed a request to the entire international mailing list of my Gestalt therapy colleagues on my behalf, saying she had “an ill friend in need of humor”. In came jokes from around the world – about fifty pages of them – which I read to my driver enroute to my gamma knife radiation treatment in another state. We laughed our way there and back!

Life is what it is. We get what we get. And we might as well enjoy it!

The author, Dori Middleman, M.D. is a child and adult psychiatrist in private practice in Merion, PA. She has a musician/conductor husband and two children. She was diagnosed with a pituitary tumor causing Cushing’s Disease in November of 2001.

Listen Interview on a Philadelphia-area public radio talkshow, Voices in the Family, about Cushing’s Disease and how to make meaning out of illness and adversity.
Read Dr. Dori Middleman’s article HOW TO HAVE FUN WITH A BRAIN TUMOR.
Read Dr. Dori Middleman’s article PSYCHIATRIC ISSUES WITH CUSHING’S DISEASE.
Read “DrDori”, Dr. Dori Middleman’s First Guest Chat, April 14, 2004.


DrDori answered questions in an online Voice Chat, June 12, 2008, 7:30PM eastern. Archives aree available.

Listen to CushingsHelp on internet talk radio

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Amy (spunkybluecat), Pituitary Bio

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A Golden Oldie from July 11, 2011

~~~

Hello, my name is Amy.

I was diagnosed with Cushing’s last November and had surgery to remove the pituitary adenoma in March.

It took me FOREVER (over 3 y) to get a diagnosis. None of my doctor’s would really listen. I was SO frustrated but kept on pushing because I KNEW something wasn’t right. Pre- surgery I had excess hair (facial+), weight gain (abdominal), stertch marks, fatigue, very irregular menstrual cycle…..Now that I’ve had the tumor removed I still have problems.

I’m hoping that some of you will help me to answer those questions/problems. My facial hair has slowed down, I’ve lost over 65 pounds in 3 months, I’m going through menpause now (I’m 36yo), my hair is starting to fall out, I have NO energy/fatigued all the time, some days I wake up OK and others I wake up vomiting or very unsteady like I’m going to pass out if I’m on my feet for too long. I am very depressed.

My life has fallen apart. My marriage is over, I have had to move in with my mother, I am unemployed, and I can’t do the fun things that I should be able to do with my 8yo daughter. I have no friends and my family is not supportive at all. They say I just need to get off my *ss. I’m tired of people blaming depression, laziness, etc. I want my life back.

I need help and don’t know where to turn. I hope that I can learn what I need to do solve these problems and meet some people who can send some sunshine my way.

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