Wednesday, May 4, 2011

Addison's Disease Poses Risks To Patients

I am so happy to see this article.  Addison's is the opposite of Cushing's. Addison's results from low cortisol levels, and Cushing's results from high cortisol.  When a Cushing's patient has a pituitary tumor removed, s/he can suffer from Addison's while the body's hypothalamus-pituitary-adrenal axis regulates itself again.  Also, a Cushing's patient who will not stop producing cortisol ultimately has to remove both adrenal glands in order to ultimate stop all cortisol production.  This makes the Cushing's patient an Addison's patient for the rest of his/her life.  These diseases are inextricably linked, and I am glad that doctors are realizing how life threatening cortisol can be. Patients know it.  European doctors know it. Let's hope US doctors will learn quickly, too.  ~m

Greater Awareness Needed On Risks That Addison's Disease Poses To Patients

Main Category: Endocrinology
Also Included In: Infectious Diseases / Bacteria / Viruses
Article Date: 03 May 2011 - 0:00 PDT

Two new studies presented at the European Congress of Endocrinology in Rotterdam show the possible dangers facing patients with Addison's disease are higher than previously thought. The new research shows that Addison's patients, who have low levels of cortisol produced by the adrenal glands, are more likely to get infections which may provoke life-threatening adrenal crises.

Addison's disease is caused by low levels of the hormone cortisol, produced by the adrenal glands. Without treatment, the condition can be fatal. Patients with Addison's disease can suffer a range of symptoms, including fatigue, dizziness, weight loss, muscle weakness, mood changes and the darkening of regions of the skin if they don't receive treatment. The most famous Addison's disease sufferer was John F Kennedy, but it is a comparatively rare condition, affecting about 1 person in 15,000.

Dr Stefanie Hahner, working at University of Würzburg, Germany, looked at the incidence of adrenal crisis in 472 German patients with Addison's disease. An adrenal crisis is a potentially life-threatening condition which occurs when cortisol levels fall dangerously low, requiring an immediate injection of hydrocortisone. Dr Hahner found that 62 of the patients had an adrenal crisis over the two-year period of the prospective study, with almost two-thirds of those needing to be hospitalised and 9.5% being treated in intensive care. Two patients died from adrenal crises during the study. The study also found that many patients were unprepared to deal with the threat to life presented by crises and further patient education programmes may be warranted.

Researcher Dr Stefanie Hahner said:

"The number of adrenal crises was higher than we expected from previous studies. Infectious disease provoked 39% of the crises, with psychological stress also causing problems. Ninety-five percent of the patients were aware of the dangers of an adrenal crisis, but only 28% had the emergency injection set. This shows that these crises are largely caused by infectious diseases and stress, but also that patients need to be better prepared to respond to the crises when they arise and that infectious disease has to be treated early and aggressively in this patient group."

In another study presented at the European Congress of Endocrinology from the University of Utrecht, The Netherlands, Dr Lisanne Smans showed that patients with Addison's disease were more at risk of suffering infections than the rest of the population.

She identified 390 Addison's patients from pharmacy records and compared the risk of infections and hospital admissions. Dr Smans found that the risk of infectious disease was 1.5 times that of a control population, (overall incidence rate of 59.2/100 person-years). In addition, Addison's patients were significantly more likely to be hospitalised for infectious disease than control groups (3.8/100 person years for Addison's patients, versus 0.8/100 person years for control groups).

Researcher Dr Lisanne Smans commented:

"We need to raise awareness amongst doctors and patients of the risk of infections in Addison's patients compared to the general population. We now want to move on to see whether influenza vaccinations can help this patient group."

Commenting on the two papers, Professor Peter Trainer, Chair of the European Congress of Endocrinology Programme Organising Committee, said:

"These studies reinforce our knowledge of the risks that infections pose to patients with Addison's disease and serious consequences that can arise. We need to look at ways of making both the medical community and patients more aware of the appropriate medical action needed to treat an adrenal crisis. This really is a case where quick action can save lives. All patients with Addison's disease should carry an emergency kit containing a hydrocortisone injection that can be given immediately if they fall ill."

Sources: European Society of Endocrinology, AlphaGalileo Foundation.

Hair Samples: Better Testing

My endocrinologist in Los Angeles has been working on a similar study here in the US.  I hope that patients in the future will not have to undergo the ridiculous rigmarole that I faced (four years of testing).  I continue to grow my hair out in hopes that I can contribute a hair sample to some study... one day.  ~mm

New Method To Measure Cortisol Could Lead To Better Understanding Of Development Of Common Diseases

Main Category: Endocrinology
Also Included In: Anxiety / Stress;  Heart Disease;  Preventive Medicine
Article Date: 03 May 2011 - 0:00 PDT

A new method to measure the amount of the stress hormone cortisol found in the body over the long term could lead to new research avenues to study the development of common conditions, such as heart disease, diabetes and depression. In results announced at the European Congress of Endocrinology, researchers found that hair can be used to create a retrospective timeline of exposure to cortisol. Cortisol is implicated in the development of many common conditions and this new technique could allow us to study its role better.

Cortisol is a hormone produced by the adrenal glands and its primary role is to help maintain body metabolism. If the body is put under (psychological or physical) stress, cortisol levels increase to allow the body to respond to the situation. Currently the standard method to measure cortisol levels is to take a blood or saliva sample. However, since cortisol is released in a circadian rhythm and with pulses throughout the day, levels can fluctuate considerably, meaning it is difficult to estimate an individual's long-term exposure to cortisol through blood and saliva tests alone. Finding a new non-invasive method to measure long-term cortisol exposure could have a major impact on our ability to determine the role of cortisol in the development of many common diseases, such as cardiovascular disease, diabetes and depression.

Dr Laura Manenschijn and her team from Erasmus MC in The Netherlands collected scalp hair samples from 195 healthy individuals and from 11 patients with Cushing's syndrome (a condition where the adrenal glands produce too much cortisol) and 3 patients with Addison's disease (a condition where the adrenal glands are unable to produce cortisol) and tested their cortisol levels. All participants filled out a questionnaire to assess what products and treatments they used on their hair. A subset of 46 participants also had their waist and hip measurements taken.

The team found that hair cortisol levels correlated positively with waist to hip ratio (r=0.425, p=0.003) and waist circumference (r=0.392, p=0.007), meaning people with higher exposure to cortisol showed higher abdominal obesity. In individuals with Cushing's syndrome the levels of cortisol in hair were significantly higher than in healthy individuals (p<0.0001). In long hair of individuals with Cushing's syndrome and Addison's disease, the levels of hair cortisol corresponded with clinical records of the amount of cortisol they had been exposed to. Additionally, in long hair of healthy women, the team were able to record alterations in cortisol exposure due to psychological stress over time. Hair cortisol levels were not influenced by gender (p=0.353), hair colour (p=0.413), frequency of hair wash (p=0.673) or hair products (p=0.109), although there was a slight, borderline significant, decrease in cortisol levels in hair that was treated (dyed/bleached) (p=0.08).

This is the first time that cortisol measurements taken from hair have been shown to correlate with known tissue effects of cortisol, such as abdominal obesity, and to provide a retrospective timeline of exposure to this hormone. The next step is to use this technique in larger studies to examine the role of long-term cortisol exposure in the development of cardiovascular disease and depression. Ultimately, this could lead to a better classification of individuals at risk of common conditions and novel approaches to prevent these.

Researcher Dr Laura Manenschijn from Erasmus MC said:

"We have suspected for a while that cortisol may be implicated in the development of many common conditions, such as heart disease, diabetes and depression. However, until now, doctors have not been able to accurately measure cortisol exposure over the long-term and so research into this has been limited.

"Our results are very exciting as they show that measuring the amount of cortisol in hair can potentially be used to monitor a person's long-term exposure to cortisol. This technique could lead to many potential uses in clinical research and has the additional benefit that it is easy to use and non-invasive.

"The results of this study show that hair cortisol is a reliable measure of long-term cortisol exposure. Now, we would like to use this tool in larger studies to examine the role of cortisol in the development of conditions such as cardiovascular disease and depression."

Sources: European Society of Endocrinology, AlphaGalileo Foundation.

Cushing's Disease: Unraveling a Medical Mystery

I found this video tonight when doing some research online. You know you will be sick a while when your disease is called a "medical mystery."

Cushing's Disease: Unraveling a Medical Mystery

The goal of the program is to educate viewers on the mysterious condition known as Cushing's disease. We will discuss why the diagnosis is often delayed: many patients can have it for five or-ten years before they are correctly diagnosed. The reason is the symptoms of Cushing's Disease are similar to those of other conditions. But as viewers will hear from experts Cushing's Disease can be treated and in some cases a full recovery is possible. In this program we will also explore the history of Cushing's Disease which is named for Harvey Cushing considered by many to be "the father of modern neurosurgery".

See 26 minute video, "Cushing's Disease: Unraveling a Medical Mystery."


Recovery: Post Op Day 14

Hi everyone.  I felt pretty good up until yesterday.  Luckily, I had a follow up appointment with my endocrinologist who diagnosed me with Cushing's. He's a Cushing's specialist. I always feel so relieved after speaking with him.

I thought I would share my questions and his responses. It may help others figure things out post op. ~m

Complications from surgery -- diabetes insipidus. Sodium levels in the hospital were 150, so they gave me DDVAP. Sodium levels dropped to 145 before I was discharged from hospital (post op day 3).

Improvements after surgery
Buffalo hump feels less rigid, skin not pulled so tight.
Belly fat is loose and jiggly. Stomach feels deflated.  Before surgery, belly tight as a drum from excess cortisol. Doc says this is a good sign.

Lab work -- 13.6 cortisol, 24 ACTH  (post op day 5 after withholding hydrocortisone dose in day 4 pm)

Concerned that I’m feeling bad now. I am 14 days post op pituitary surgery. Felt OK before yesterday. Not cartwheels but not in pain either. Yesterday, I woke up with a mild headache and stiffness in my neck and shoulders. I went to the chiropractor but it didn't offer much relief. I took a 4 hr nap and had 9 hours of sleep, but my symptoms remain. Today, my symptoms are the same, even after a 2 hour nap.

  • Mild burning/itching in sinus
  • Headache
  • Pressure in head, upside down
  • Overall body aches
  • Stiff neck and shoulders
  • Sore back
  • Preference for dark rooms, no noise
  • No drainage in throat so probably not a cerebrospinal fluid leak (CSF leak) 
Doc said feeling bad was a great sign. He is concerned because I am showing signs of hypoatremia, or low sodium levels.  This is common after pituitary surgery, especially for those of us who experienced diabetes insipidus which leads to hyperatremia, or high blood sodium levels. He said he often sees these symptoms happen right around this time (days 7-14 post op). At 8 am on Friday, I will have blood drawn for an electrolyte panel (includes sodium) with cortisol and ACTH after withholding 1 pm dose on Thursday. He suggests that when I drink fluids, I drink Gatorade only, no water, for the next two days. This will help rebalance my electrolytes.
University of California at San Francisco's Pituitary Center mention this in their post surgical instructions:
Some patients develop disorders of salt and water metabolism following pituitary surgery. Headache, nausea, vomiting, confusion, impaired concentration, and muscle aches might be due to hyponatremia (low blood sodium levels). This disorder typically occurs 7 to 10 days after surgery and is more common in patients who have had surgery for Cushing's disease. If you develop these symptoms, contact us immediately. Excessive urination, thirst, and the need to ingest large quantities of fluids might be related to the onset of diabetes insipidus or diabetes mellitus. These disorders put you at risk for dehydration. These symptoms require urgent evaluation and determination of the underlying cause so that appropriate treatment may be given.

I’m taking 10 mg Ambien sleeping pills at night. I tried a few nights without them and I didn’t sleep.
Doc asked if I had any other Cushing’s symptoms, as perhaps too much hydrocortisone was keeping me up at night. I told him I had no other symptoms, and I had lost 6 pounds. A person doesn’t lose weight with Cushing’s!  So, Doc suggested I move dose my 2 pm dose to 1 pm. This will hopefully allow the cortisol levels to be low enough for me to sleep at night.

Dose schedule – can I reduce my hydrocortisone dose now, 14 days post op or wait a few days until the weekend?  What are the next dose levels?
  • Do not drop more than 2.5 mg of cortef at a time.
  • Currently on 20 / 5
  • Stay at 20 / 5 -- next few days, get through the next 8 am blood draw this Friday
  • 17.5 / 5  -- stay at this dose for 10-14 days
  • 15 / 5  -- stay at this dose for 10-14 days
  • Appointment with Doc before dropping dose any lower

When do I need to have an overall hormone lab panel done? How far post op?  I haven’t done my labwork scheduled for after my appointment in January 2011.
Do this 6 weeks post op, or June 1, 2011.

When do I test?  Do I need to test 17-OHS or 8 am cortisol or 24hr UFC when dropping dose of Cortef?

~Moxie Melissa

93 Years Old and Still Dancing

I found this while researching low sodium levels. I like this lady. This made me smile.

New York Times' article: Doctors Say Don't, and the Patient Says Do 

''You see,'' she said, ''we patients are not just statistics. We don't always behave the way studies predict we will.''
 Remember, you know your body best. Don't let anyone tell you otherwise.

Cushing's in the News

This beautiful and sweet gal had the same pituitary surgery as I did two weeks ago.

Dramatic difference in appearance. She gained 70 pounds. I've gained 100. Stupid Cushing's disease.

~Moxie Melissa