Day 13, Cushing’s Awareness Challenge

Posted on April 13, 2024 by MaryO

UVA 2004
Cushing’s Conventions have always been special times for me – we learn a lot, get to meet other Cushies, even get referrals to endos!

As early as 2001 (or before) my pituitary function was dropping.  My former endo tested annually but did nothing to help me with the symptoms.

In the fall of 2002 my endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn’t worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years.  Needless to say, I left his office in tears, again.

Fast forward 2 years to 2004.  I had tried for a while to get my records from this endo. He wouldn’t send them, even at doctors’ or my requests.

I wanted to go see Dr. Vance at UVa but I had no records so she wouldn’t see me until I could get them.

Finally, my husband went to the former endo’s office and threatened him with a court order. The office manager managed to come up with about 13 pages of records. For going to him from 1986 to 2001 including weeks and weeks at NIH and pituitary surgery, that didn’t seem like enough records to me.

In April of 2004, many of us from the message boards went to the UVa Pituitary Days Convention. That’s where the picture above comes in.  Other pictures from that convention are here.

By chance, we met a wonderful woman named Barbara Craven. She sat at our table for lunch on the last day and, after we learned that she was a dietitian who had had Cushing’s, one of us jokingly asked her if she’d do a guest chat for us. I didn’t follow through on this until she emailed me later. In the email, she asked how I was doing. Usually I say “fine” or “ok” but for some reason, I told her exactly how awful I was feeling.

Barbara emailed me back and said I should see a doctor at Johns Hopkins. I said I didn’t think I could get a recommendation to there, so SHE referred me. The doctor got right back to me, set up an appointment. Between his vacation and mine, that first appointment turned out to be Tuesday, Sept 14, 2004.

Just getting through the maze at Johns Hopkins was amazing. They have the whole system down to a science, moving from one place to another to sign in, then go here, then window 6, then… But it was very efficient.

My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests (ITT). From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 17 years! I was amazed to hear all this, and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I went back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He said that I would end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th.

For those who are interested, my new endo is Roberto Salvatori, M.D.
Assistant Professor of Medicine at Johns Hopkins

Medical School: Catholic University School of Medicine, Rome, Italy
Residency: Montefiore Medical Center
Fellowship: Cornell University, Johns Hopkins University
Board Certification: Endocrinology and Metabolism, Internal Medicine

Clinical Interests: Neuroendocrinology, pituitary disorders, adrenal disorders

Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.

Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, in November, 2004, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we had to appeal on Monday. My local insurance person also worked on an appeal, but the whole thing was  just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving.

As it turned out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Was I going to be a ginuea pig again?

The new GH company assigned a rep for me, submitted info to pharmacy, and waited for insurance approval, again.

I finally started the Growth Hormone December 7, 2004.

Was the hassle and 3 year wait worth it?

Stay tuned for April 15, 2016 when all will be revealed.

Read

Read Dr. Barbara Craven’s Guest Chat, October 27, 2004

Thanks for reading 🙂

MaryO

Filed under: adrenal crisis, Cushing's, Meetings and Conferences, pituitary, symptoms, Treatments | Tagged: , , , , , , , , , , , , , , , , , , , | 3 Comments »

From This Month’s Reader’s Digest

Posted on January 28, 2022 by MaryO

From the February, 2022 issue of Reader’s Digest:

readers-digest.jpg

Read the original article at readers-digest-misdiagnosed

Filed under: Cushing's, pituitary | Tagged: , , , , , , , , , , , , | Leave a comment »

Rapid Control Of Ectopic Cushing’s Syndrome During The Covid-19 Pandemic in a Patient With Chronic Hypokalaemia

Posted on May 25, 2021 by MaryO

This article was originally published here

Endocrinol Diabetes Metab Case Rep. 2021 May 1;2021:EDM210038. doi: 10.1530/EDM-21-0038. Online ahead of print.

ABSTRACT

SUMMARY: In this case report, we describe the management of a patient who was admitted with an ectopic ACTH syndrome during the COVID pandemic with new-onset type 2 diabetes, neutrophilia and unexplained hypokalaemia. These three findings when combined should alert physicians to the potential presence of Cushing’s syndrome (CS). On admission, a quick diagnosis of CS was made based on clinical and biochemical features and the patient was treated urgently using high dose oral metyrapone thus allowing delays in surgery and rapidly improving the patient’s clinical condition. This resulted in the treatment of hyperglycaemia, hypokalaemia and hypertension reducing cardiovascular risk and likely risk for infection. Observing COVID-19 pandemic international guidelines to treat patients with CS has shown to be effective and offers endocrinologists an option to manage these patients adequately in difficult times.

LEARNING POINTS: This case report highlights the importance of having a low threshold for suspicion and investigation for Cushing’s syndrome in a patient with neutrophilia and hypokalaemia, recently diagnosed with type 2 diabetes especially in someone with catabolic features of the disease irrespective of losing weight. It also supports the use of alternative methods of approaching the diagnosis and treatment of Cushing’s syndrome during a pandemic as indicated by international protocols designed specifically for managing this condition during Covid-19.

PMID:34013889 | DOI:10.1530/EDM-21-0038

From https://www.docwirenews.com/abstracts/rapid-control-of-ectopic-cushings-syndrome-during-the-covid-19-pandemic-in-a-patient-with-chronic-hypokalaemia/

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Temozolomide Effective Against Cushing’s Caused by Aggressive Tumors

Posted on June 29, 2019 by MaryO

The oral chemotherapy temozolomide might be an effective treatment for Cushing’s disease caused by aggressive tumors in the pituitary gland that continue to grow after surgery and taking other medications, a case report suggests.

The study, “Successful reduction of ACTH secretion in a case of intractable Cushing’s disease with pituitary Crooke’s cell adenoma by combined modality therapy including temozolomide,” was published in the journal J-Stage.

Cushing’s disease is often caused by a tumor in the pituitary gland that secretes high levels of adrenocorticotropic hormone (ACTH), leading to high levels of cortisol and other symptoms.

Macroadenomas are aggressive, fast-growing tumors that reach sizes larger than 10 millimeters. Crooke’s cell adenoma is a type of macroadenoma that does not respond to conventional therapies, but has deficient mechanisms of DNA repair. That is why chemotherapeutic agents that damage the DNA, such as temozolomide, might be potential treatments.

Researchers in Japan reported the case of a 56-year-old woman with Cushing’s disease caused by a Crooke’s cell adenoma in the pituitary gland who responded positively to temozolomide.

The patient was diagnosed with Cushing’s disease at age 39 when she went to the hospital complaining of continuous weight gain. She also had excessive production of urine and a loss of vision in the right eye.

The lab tests showed high levels of cortisol and ACTH, and the MRI detected a tumor of 4.5 centimeters in the pituitary gland. The doctors removed a part of the tumor surgically, which initially reduced the levels of ACTH and cortisol.

However, the hormone levels and the size of the residual tumor started to increase gradually after the surgery, despite treatment with several medications.

By the time the patient was 56 years old, she went to the hospital complaining of general fatigue, leg edema (swelling from fluid), high blood pressure, and central obesity (belly fat).

Further examination showed a 5.7 cm tumor, identified as a Crooke’s cell macroadenoma. The patient underwent a second surgery to remove as much tumor as possible, but the levels of ACTH remained high. She took temozolomide for nine months, which normalized the levels of ACTH and cortisol. After the treatment, the patient no longer had high blood pressure or leg edema.

The tumor shrunk considerably in the year following temozolomide treatment. The patient started radiation therapy to control tumor growth. The levels of cortisol and ACHT remained normal, and the tumor did not grow in the seven years following temozolomide treatment.

“These clinical findings suggest that [temozolomide] treatment to patients with Crooke’s cell adenoma accompanied with elevated ACTH may be a good indication to induce lowering ACTH levels and tumor shrinkage,” researchers wrote.

Other cases of Cushing’s disease caused by aggressive macroadenomas showed positive results, such as reduction of tumor size and decrease in plasma ACTH, after temozolomide treatment. However, more studies are needed to establish the ideal course of chemotherapy to treat these tumors, the researchers noted.

From https://cushingsdiseasenews.com/2019/06/18/temozolomide-effective-cushings-disease-aggressive-tumors-case-report/

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8 medical conditions that could cause sudden weight gain

Posted on October 1, 2018 by MaryO

Weight gain can be associated with hormonal conditions, mood disorders, or other physiological factors. A sudden and unexplained weight gain could be your body’s way of signalling an underlying medical issue that needs to be addressed. For the sake of health and long-term well-being, it is important to differentiate between a few harmless extra kilos and a fluctuation that could be hiding a bigger problem. You can only be certain after consulting a healthcare practitioner.

If the weighing scale says your numbers are up but you haven’t changed your eating and exercise habits, you might consider any of the 8 medical conditions:

1.     Hypothyroidism The American Thyroid Association reveals that one in eight women will develop a thyroid disorder during her lifetime. Hypothyroidism refers to an underactive thyroid. The thyroid controls several body functions and your metabolism is one of them. If you’re not producing enough thyroid hormone your body can’t burn as much energy. Symptoms appear throughout your system. They include: weight gain, exhaustion, drier skin, thinner hair, bloating, muscle weakness, constantly feeling cold, and constipation. Once diagnosis is confirmed a doctor can prescribe an oral replacement for thyroid hormone that can relieve symptoms within weeks.

2.     Polycystic ovary syndrome (PCOS) One in 10 women of childbearing age undergoes PCOS. It is an endocrine disorder characterised by an imbalance in the sex hormones oestrogen and testosterone.  This results in irregular periods, acne and even facial hair growth. The disorder also disrupts the way the body uses insulin — which is the hormone responsible for converting carbohydrates into energy. As a result the sugars and starches you consume are stored as fat instead of energy, thus, weight gain. PCOS has no cure but women who have it can manage their symptoms with lifestyle changes and medication. A doctor’s consultation will help you find an appropriate method.

3. Insomnia Avoid fake news! Subscribe to the Standard SMS service and receive factual, verified breaking news as it happens. Text the word ‘NEWS’ to 22840 Sleep deprivation can negatively impact both your metabolism and your hunger hormones. Sleeping too little increases ghrelin, the hormone that signals the body that it’s time to eat, while lowering leptin, the hormone that says you are full. The result: increased cravings and snacking to get more energy through the day. Insomnia increases impulsive eating. A 2018 study published in the American Journal of Clinical Nutrition found that the right amount of sleep could mean consuming up to 10 fewer grams of sugar throughout the day.

4.     Tumours Weight gain around your belly as opposed to your lower body or other areas can be more dangerous to your health. Large pelvic area tumours like uterine or ovarian tumours can inflate the abdomen the way excess fat does. In some cases they can also be cancerous. In addition to weight gain, symptoms of ovarian or uterine tumours include vaginal bleeding, lower back pain, constipation and painful intercourse. But these signs are common for other conditions as well so it‘s worth confirming with a doctor to rule out any possible complications.

5. Peri menopause and menopause Perimenopause -the transition period to menopause can start as early as a woman’s mid-thirties, but usually starts in their forties. This period triggers hormones like oestrogen to rise and fall unevenly, which can cue weight gain in some women. Genetics are a good starting point on how your body experiences these changes, so it would be helpful to look into how it affected your mother and other older women in your family. Other signs of perimenopause are mood swings, irregular periods, hot flashes, and changes in libido. Age also contributes to loss of muscle mass and increase in body fat. An Ob-Gyn should be able to talk you through these changes and recommend management options.

6.     Mood disorders Depression and anxiety can result in fatigue, lack of focus and irritability. Some people cope with anxious or sad feelings by mindlessly munching on food they don’t really need. Additionally chronic stress throws your body into fight-or-flight mode, leading to a surge of adrenaline, as well as a heavy dose of the hormone cortisol –responsible for restoring energy reserves and storing fat.

7. Cushing syndrome Sometimes tumours on the pituitary or adrenal glands can contribute to a condition known as Cushing’s disease which is characterised by high levels of cortisol in the blood. Taking long term steroids could also result in this disease. Patients with Cushing syndrome will experience rapid weight gain in the face, abdomen and chest. They also display slender arms and legs compared to the heavy weight in the core of the body. Other symptoms include: high blood pressure, mood swings, osteoporosis, discoloured stretch marks, acne, and fragile skin. Depending on the cause, Cushing‘s disease can be treated in a different ways.

8. New medication Before starting on any new prescription medication, ask your doctor if weight gain is a possible side effect. Birth control pills may lead to weight gain depending on the brand, dosage, and the person’s hormonal levels. Psychiatric medications, especially for depression and bipolar disorder, have been known to cause weight gain, as they target the brain. Similarly, taking insulin to manage diabetes or medications that treat high blood pressure can also lead to extra kilos, so staying active and sticking to a strict meal plan can help you take insulin without unnecessarily weight gain.

Adapted from https://www.standardmedia.co.ke/lifestyle/article/2001297348/8-medical-conditions-that-could-cause-sudden-weight-gain

Filed under: adrenal, Cushing's, pituitary, Rare Diseases, symptoms | Tagged: , , , , , , , , , | 1 Comment »

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