Monday, October 27, 2008

Martha's Story:

Martha, it was way too soon, and we will miss you.

Stacey and Martha had been together for 11 years. During most of those years Martha struggled with IBS and acid reflux. About 6 years ago, they noticed her cheeks were getting "bigger" but her legs and arms were very thin. In fact, until the last 5 years she was a thin/normal woman. Stacey said she would squeeze Martha’s cheeks saying "look at those chipmunk cheeks".

Five years ago her health started dramatically changing. She had an ovarian cyst burst, then after problematic periods she had a fibroid tumor removed and a D&C performed. After that she never had her period. Her GP told her she was going through early menopause. Her strength was never the same. Stacey and Martha thought it was because she was pushing herself too hard with a long commute and getting up very early in the morning.

Over the last two years, Martha had unexplained pain in her liver area and was hospitalized. She was diagnosed with a fatty liver, but they could not determine the actual cause of pain. She was also diagnosed with pre-diabetes, and anemia. Almost exactly two years ago Martha became severely depressed. So severe and very unusual for Martha that she took some time off from work (and unfortunately was never able to return) and was referred to a psychiatrist. As is a common routine for those suffering with Cushing’s, it was a wrong diagnosis with too many meds which masked the real problem.

By this point Martha’s face was very, very swollen. Stacey related to me, “Now I know it was the telltale moon face.” Martha went to her GP with concerns about her face and the doctor gave her lasix because she felt the swelling was due to water retention.

In April of 2007, Martha was admitted to the hospital for severe pain in her feet and numbness from her ankles to her mid-section. Going through her records in the past few days, Stacey found an EKG which was noted as being abnormal. They never informed either Martha or Stacey of those results. No one ever performed a second EKG, and she never saw a cardiologist while in the hospital. There was a doctor there who, in passing, said her problem might be hormonal and she should see an endocrinologist. Two endos later (after multiple misdiagnoses, doctor appointments, refusal for disability, etc.) they finally found Dr. F.

The first time she saw Dr. F. Martha asked him "I'm not going to die from this am I?" Dr. F responded, "We all die someday, but I have not lost a patient yet".

Stacey said, “I don't know how true that is, but it made Martha feel better for the moment. I remember standing at the counter taking care of paperwork, and Martha asked me ‘I'm really sick aren't I?’. My response was ‘Yes, hon, but we're going to get through this’. I so wish I had been right.”

Martha’s biochemical testing with Dr. F did show hypercortisolemia, the cause for Cushing’s. Since her pituitary MRI was not diagnostically clear as a source of the Cushing’s, an IPSS was ordered.

Upon getting the pre-op work ready for her IPSS, Martha had another abnormal EKG and she was sent for a chemically induced stress test. During the stress test, she said she became very, very sleepy and the nurse asked if she was ok. A few days after the test she became very dizzy and briefly passed out in the kitchen but refused to go to the hospital. She was so tired of being poked, prodded and not getting anywhere with any answers.

On October 14, 2008, the day before she was to get the results of the EKG, Martha died. Stacey had talked with her several times throughout the day but when she arrived home from work she found Martha unresponsive.

Stacey related to me, “I tried to give her CPR, but I knew it was too late. I only hope she went gently.”

Stacey left me with these remarks:
I wonder if I should have fought harder for her to go back into the hospital, but if Martha's heart at that point was so weak, she may have died at the hospital rather than at home were she felt safe. Or she would have had tubes sticking out of her everywhere and she had already told me she didn't want that. I just wish there was something I could have done to "fix" her. It's not right such a good, caring soul should have to go so early, and with so much pre-death disharmony in her body.

Martha was such a wonderful person. She took the time to learn a stranger's name and to start a conversation with just about anyone. Martha had not worked for two years and had not been in contact with many of her co-workers during her illness. Even so, many of her friends from work went to her service and shared stories about her. They said she was the one to go to for a laugh, smile or a little "pick-me-up" joke. Although many of them had not even talked with her for two years, they were crying during her service. Martha was a good soul. I'm not sure how else to describe her. I'm going to miss her dearly, and I'm not sure yet how I'm going to get through this.
Those of us in the Cushie community were very concerned for Martha, and we were so glad she had Stacey advocate for her. I just wish we had known them sooner. And I wish her doctors in the past years had looked at her symptoms as a whole, not as separate entities.

For those of you who don’t read the message boards, I’d like to share a bit more about Martha’s symptoms:
  • Cardiovascular abnormalities
  • IBS
  • Acid reflux
  • Fluctuating TSH
  • Moon face
  • Fatty liver
  • Striae
  • Ovarian cyst
  • Hairline fractures (multiple) of spine and other bones
  • Elevated blood sugar
  • Insulin resistance
  • Unexplained flank pain (very common in the Cushie community)
  • Mid-section obesity
  • Thin extremities (although not all Cushie’s have thin extremities)
  • Early “menopause” (Low estradiol, low FSH, low LH)
  • Unexplained bruising
  • Buffalo hump
  • Supraclavicular fat pads
  • Unexplained foot and leg pain/numbness
  • Unexplained fatigue
  • Low ferritin
  • Anemia
  • Low IGF-1
Stacey, I want to convey my deepest sympathies, and thank you so much for sharing Martha’s story with me and allowing me to share it with the rest of the world. My heart hurts at such a loss.

If you are suffering these symptoms, do not give up, do not let one or two or even umpteen doctors brush you off.
Pursue and prevail. Advocate for yourself. Seek support. Believe in yourself.
For those of you in the medical community, please look deeper at your patients when you see these telltale signs. Martha had a slew of them. Many of us only have some of them. In another post, When the "gold standard" becomes tarnished...., I wrote about a study done by Findling, et al, which points out a huge population where Cushing’s is generally overlooked and the depressing mortality for those same folks. Findling lists many reasons, including a study done by Cartagi, et al, where an extraordinarily large percentage of diabetic patients actually had Cushing’s. It is often too easy to pin a diagnosis of diabetes or hypertension without realizing it is a symptom.

In When "the next episode" takes on new meaning...., I also documented this:
"The features of endogenous hypercortisolism (especially, when mild) are protean and coincide with many common clinical conditions like the dysmetabolic syndrome (1, 2). Screening studies in high-risk populations have discovered unsuspected CS in as many as 2–5% of patients with diabetes mellitus (3–7) and suggest that mild CS is more common than previously appreciated."…Cyclical Cushing's syndrome: an update, the full text article says, "Cyclical Cushing's syndrome is a pattern of hypercortisolism in which the biochemistry of cortisol production fluctuates rhythmically. This syndrome is often associated with fluctuating symptoms and signs. This type of case was initially thought to be rare. It has, however, recently been recognized as occurring much more frequently. The phenomenon is important because it can, if not recognized, lead to errors in diagnosis and differential diagnosis of the syndrome and in assessment of therapeutic outcomes. All of these can have very serious clinical consequences."
To read more:
Testing 101: An introduction
3 Jul 2008 by Robin
Since determining endocrine disorders involves a lot of testing, I thought I would spend some time the next few days talking about some of those tests. With Cushing's Disease, an adenoma can cause hypopituitarism and panyhypopituitarism ...

Testing 101: An introduction, Part II
4 Jul 2008 by Robin
Yesterday I wrote mainly about pituitary tumors and their hormones, and how they were involved in testing. Today, I want to include information about adrenal tumors. The adrenal glands sit on top of the kidneys and are sometimes called ...

Testing 101: Imaging
6 Jul 2008 by Robin
Since there is so much involved in the testing and diagnosis of Cushing's Syndrome/Disease, I thought I'd insert some information on imaging here. Imaging alone cannot diagnose Cushing's. There must be biochemical proof of it, also, ...-

Testing 101: Biochemical analysis
7 Jul 2008 by Robin
There are four FDA-approved labs for testing salivary cortisol (Quest, ACL Labs, Esoterix, and Labcorp), and each uses it's own method with varying ranges. The ranges for Esoterix are below: ...

Testing 101: Testing Growth Hormone Levels in Adults
9 Jul 2008 by Robin
The Growth Hormone Research Society met in 2007 in Australia and penned a consensus statement about the problems, testing, and treatments associated with adult GHD. In their consensus statement, they write: ...

Testing 101: IPSS aka BIPSS
8 Jul 2008 by Robin
An IPSS is a test to sample the amount of ACTH draining into the inferior (vs. the superior) petrosal sinuses from the pituitary. Two catheters (one on each side) are threaded from the groin area up each side of the body to a major vein ...
Dynamic MR Imaging of the Pituitary: Same tools, different technique (but wow, what a difference!)
What is Cushing's Disease?

Clinical Correlates of Major Depression in Cushing's Disease
For more information about Cushing’s, see .


  1. All of my love and heartfelt sorrow for Stacey during this difficult time. I am so sorry for your loss. :(

  2. I knew Martha's story, as I am a member of the boards. But reading it all laid out here, I was astounded at how much I had in common with her. I'm so sorry for the loss of Martha. My sympathies go to Stacey.
    Thanks for telling her story, Robin. I hope that others with Cushing's read the story, so that they can find the help they need.

  3. Stacey, thank you so much for sharing Martha's story, and Robin, thank you for posting it on your blog to help others who may be on this journey, and to help educate medical professionals as well. The elements of Martha's story are sadly familiar to those of us in the Cushings community. With increasing awareness I pray that more people are helped much earlier.

    Stacey, my heart is with you and Martha's family.

  4. Robin,
    I too had read Martha's story on the boards. Reading this post brought tears to my eyes. It's just not fair. No one should have to endure years of unnecessary pain and suffering.
    My thoughts and support go out to her parnter Stacey and Martha's family.
    Thank you for posting this Robin, you're a wonderful advocate.

  5. I have all the symptoms of Cushing's disease. My doctors have not taken me seriously. I printed out your blog post with Martha's story and took it to my doctor. He is going to help me get tested for Cushing's. Thank you for your story.

    1. Denise, how are you now? Hope well.

  6. My deepest condolences to Stacey and Martha's other family. Thank you Stacey for what must be a very difficult story to share.

  7. Thanks to all of you for the kind words of support. This is just all still a nightmarish dream to me and so unexpected. I really thought that we would beat this.

    Denise... Martha told me not too long ago, that once she started to feel better, she was going to get onto the Cushings Support board and help others learning of this disease.... I think she has done that.

    I'm so glad you were able to read her story, take it to the doctor and get the testing you need. Good luck to you.


    1. Stacey, Martha is probably the most active member of the Cushings support board. Thanks to her story, that I found doing my own research, I recognized my symptoms and lead my Doctor to the right diagnose, just two weeks ago I had brain surgery, they removed a tumor from my pituituary gland that cause Cushings. I am recovering now, somehow thanks to you and your wife, I guess God works His ways and you can at least fell proud you help save a life, even 5 years later. Thanks for thinking of others and sharing.

  8. There is no comment to add that can measure to the power of this journey... truly thankful for the sharing. This will touch many lives... Love and Healing prayers, Hazel

  9. hi everyone im 18 and my bf is 19 nearly 20, he is suffering from cushings syndrome, it is such a hard time right now for the both of us, im so scared. He has recently been getting even more symptoms added to his long list yet the hospital has done many tests but not located the tumour therefore they are going to remove the pituitary gland as it is releasing too many hormones or too much of one hormone. My deepest sympathy goes out to Stacey, i think you are a very strong person and offered Martha a great lot of support. I feel as though i have no one to talk to about this and feel guilty of my fears that i have for my boyfriend. I tell him it will be ok but always have a wondering thought in the back of my mind. I think that doctors and hospitals should know every symptom for this disease and should act upon it as fast as any other disease as it is just as serious. All those with cushings and those who are the loved ones of the sufferers are not alone. Its a difficult time yet we all need to support eachother and help the sufferers to battle this. I would like to say thanks for having this board as it allows people like all of you and myself to express feelings and emotions and hopefully get one step closer to a more optimistic result.

    Thanks xx

  10. Hi, Anonymous. Please visit and register for the message boards. You'll find a lot of helpful folks there who care! We'll support you through this.

  11. So sad and very, very scary. As a newly dx cushings patient it has been very frustrating and a long process. A lot of times you feel like giving up on the dr's because they are so quick to dismiss and judge. My heart goes out to Martha and Robin thank you for sharing her story!

  12. Hi there. My name is Crystle, and I also have Cushing's. First, I would like to extend my condolences. She was a very beautiful woman. Second, I would like to briefly share my story-I too was not believed at first-it took them 2 years and a slew of excriciating exploratory surgeries and tests before they found the tumor. It's now been 6 years, and 9 surgeries later, and I am not cured, nor in remission. I am 23 years old, 5'7", 262 lbs, have diabetes, heart problems, extreme fatigue-well you know-pretty much all of it. My doc's are suggested yet another combination of radiation after full removal of the pituitary, and a complete bilateral adrenalectomy. I don't have much hope for this. I too am unable to function, but I have so much ambition! I would love some advice, because even after surgery after surgery, things have only gotten worse. It seems illogical to continue with treatment. I apologize for the length of this-I've never "blogged" before.
    Thank you, and again, my sincerest condolences.

  13. Crystle, somehow I missed your comment in July. I hope you will see this. Please join us at the cushings-help message boards. We can help support you!! Hugs...

  14. Marthas, story has always been special to me, I was in the er on the beginning of this journey to discovering I had most likely a lifetime of untreated cushings the day that Martha passed away..when I first read her story, I felt as though I had been touched by an angel that day..and sometimes will just come back and read her story, just to be with her..her story is so like mine and where I am at my life..these days..Im afraid, to thatI might die, because of my heart..and despite ekgs, and ctscans that show left atrial enlargement..despite rounds and rounds of postive own failing cognitive functioning..keeping me from even advocating for myself most days..I reach out for hope..and I pray..I consider myself blessed each day I am still here..I feel for the loss of Martha..and am so pleased Robin keeps her memory alive and that even in her passing, she is still helping others by her story being so sorry for your loss Stacey..She was a beautiful women and a lovely soul...I give my condolences..Thank You Robin for sharing her story and for all you do for the cushings community.Joanne

  15. My deepest condolence for your loss and thank you for sharing your story. It brought tears to my eyes. When I saw Martha’s picture/face, I saw my face or the “moon face”, and everything sounded so familiar. I myself when last checked (2-3 days ago) had total of more than 32 symptoms of Cushing’s. Currently, I’m at the end process of diagnostic tests to confirm for cushing’s disease. Had a positive MRI last week that also showed another white spot suspicious of old hemorraghic infarct or calcium. So had to do a CT this morning. Then based on the CT scan, I’ll have the bilateral inferior petrosal sinus sampling. This is what is worrying me more than the upcoming surgery after that. May be I’m in denial…there are many days or moments when I think or believe that I am making a mountain out of a mole hill. But then, reading stories such as of Martha’s makes me see the seriousness of the condition and feel glad that I opted to see an endocrinologist (after self-diagnosing myself as having cushings)…I’m glad that I have the knowledge from nursing schooling and my personal internal/external resources that I was able to look out for information to self diagnose and push myself to see an endocrinologist (I have no medical insurance, so I have no preventive or regular exams or visits to or with a primary care provider). But I did do a full preventive work-up while I was in an Asian country, where I found out that i had glucose intolerance, increase WBC (mild neutrophilia), increased hgb (from which I get the polycythemia vera symptoms and depression too), and poly cystic ovary syndrome or disease (PCOS). The doctor who looked over the lab results just focused on advising me on losing weight and f/u with blood sugar check and the polycystic ovary in 3 months. He disregarded my question on the polycythemia vera or the elevated hgb result.
    I suspected that the polycystic ovary that I have is secondary to the cushing’s as I read one article that theorized that PCOS could be a cause of something else. Eventhough I didn’t find any article or reading/findings of PCOS and cushing’s as related.
    I asked about it to my endocrinologist but she didn’t know. She said she’ll look up. Her expression was as if she has not even noticed my PCOS history or the idea of PCOS and cushing’s.
    Looking at Martha’s history, she had ovarian cysts…and my belief in my theory that my PCOS is related to or is secondary to Cushing’s is firmer. Just like cushing’s give so many other symptoms, which are also present as separate diagnoses entities, PCOS could be just another one yet to be confirmed. And same thing about the fatty liver… one of my liver profile result is elevated…is this coincidence or secondary to Cushing’s?
    And, now I’m thinking that may be my mother died of Cushing’s (died at age 45 seemingly of stroke or heart attack….? Didn’t have medical or health access to get a diagnosis). She did had hypertension and she was fine doing her usual home chores that morning or uptill the noon of her D day. She was found unconscious on the floor.
    This process of assessing and diagnosing myself has been a great learning experience for me, and I love sharing it with others to promote the awareness of the condition. I was relieved that I don’t have bipolar, which was my differential diagnosis. I’m nervously yet hopefully looking forward to the treatment phase of my disease.

  16. I am a mother of a 17 y/o daughter who began gaining weight rapidly about 2 1/2 years ago. I felt she was going through late onset of puberty and that it would correct itself. By last year she had gained 50 pounds and I was convinced she had Type 2 diabetes and made her an appointment. She was found to be insulin resistant, elevated BP, elevated pulse, hypothyroidism, increased cholesterol, obese, and the list goes on....She was given a coloring book with stickers and told to lose weight while keeping this food journal. She was mortified. She was 16 years old. I then took her to Tulane Medical Center and all tests were repeated and found to basically the same. Again, she was told to "go home, eat better, and don't gain anymore weight. That is your homework". Well needless to say she has gained 50 additional pounds, has the hump and purple stretch marks. Her BP today is 140/92. She saw a new provider yesterday who spent 2 hours with her and never told her if she lost weight she would have better lab results. Instead she said, "we will figure this out". I came home and started listing her symptoms and Cushing's presented every time. I am convinced she suffers, and has suffered for almost 3 years with Cushing's. I am hopeful for a diagnosis (that may seem weird, but the limbo is killing her I am sure of it) so that we can get treatment and she can realize her dreams after high school. Thank you for taking the time to read this response. I am sorry for those that have lost others to this disease and to those of you who are suffering the same symptoms. I am so thankful there is a soft place to land where others understand what this illness entails.



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