Monday, August 31, 2009

Addison’s Blog Alerts

Addison's Disease « 82Pounds
By 82pounds
I was looking at one of the Addison's forums I sometimes follow, and was very sad to see that a beautiful girl about my age, who was diagnosed the same time as me last summer, passed away due to Addison's Disease. ...
82Pounds -


Addison's Disease! I totally got the Mystery Diagnosis today, and I don't even like endocrinology. If JFK hadn't been shot, he would have died of Addison's disease. In any event, summer is pretty much over. Saddening, but it's been a ...
.lkw -

Friday, August 28, 2009

For sure! RT @sandyboone: Great workshop on Photoshop CS4 - learning a lot.

Tuesday, August 25, 2009

2 new and updated Cushing's bios added. dx include 1 adrenal, 1 pituitary

Tuesday, August 25, 2009

Cushing's locations page updated, 2 new people added.

Tuesday, August 25, 2009

6 new and updated Cushing's bios added. dx include 1 pituitary, 5 undiagnosed

Tuesday, August 25, 2009

Cushing's locations page updated, 5 new people added.

Saturday, August 22, 2009

@staticnrg The spam message is gone from my dashboard - maybe it's been marked ok?

Saturday, August 22, 2009

@staticnrg I know - it's still marked as spam. I don't know when it will get released. :( Thanks for trying!

Friday, August 21, 2009

This Blog was Marked Spam???

Today I got a message that this blog is shut down. I have filled out the form to appeal this. Unbelievable waste of time.

I spend hours scouring the news for items that will help others with Addison's (or Cushing's, or interested in Barbados, or piano) or I write about me. No profit anywhere. But I'm marked as a bad guy.

Aug 1 on Blogger Buzz at they wrote:

While we wish that every post on this blog could be about cool features or other Blogger news, sometimes we have to step in and admit a mistake.

We've noticed that a number of users have had their blogs mistakenly marked as spam, and wanted to sound off real quick to let you know that, despite it being Friday afternoon, we are working hard to sort this out. So to those folks who have received an email saying that your blog has been classified as spam and can't post right now, we offer our sincere apologies for the trouble.

We hope to have this resolved shortly, and appreciate your patience as we work through the kinks.

August 2, they wrote:

You Are Not Spam

You knew that already, and now we do too. We have now restored all accounts that were mistakenly marked as spam yesterday. (See: Spam Fridays)

We want to offer our sincerest apologies to affected bloggers and their readers. We’ve tracked down the problem to a bug in our data processing code that locked blogs even when our algorithms concluded they were not spam. We are adding additional monitoring and process checks to ensure that bugs of this magnitude are caught before they can affect your data.

At Blogger, we strongly believe that you own and should control your posts and other data. We understand that you trust us to store and serve your blog, and incidents like this one are a betrayal of that trust. In the spirit of ensuring that you always have access to your data, we have been working on importing and exporting tools to make it easier to back up your posts. If you'd like a sneak peek at the Import / Export tool, you can try it out on Blogger in Draft.

Our restoration today was of all blogs that were mistakenly marked as spam due to Friday's bug. Because spam fighting inherently runs the risk of false positives, your blog may have been mis-classified as spam for other reasons. If you are still unable to post to your blog today you can request a review by clicking Request Unlock Review on your Dashboard.

Friday, August 21, 2009

Adrenal gland calls for lifelong treatment

Dr. Paul Donohue / Your Good Health


DEAR DR. DONOHUE: I am 54. Last year, after two months in two different hospitals, I was diagnosed with Addison's disease. I have to take prednisone daily. I have gained 84 pounds, and now I have type 2 diabetes. I know Addison's has to do with the adrenal glands shutting down. To what extent do they shut down? I've been told this is fatal. Do I take medicine for the rest of my life? Please explain Addison's disease to me. - V.B.


ANSWER: Weighing in at only 1/10 ounce, each adrenal gland - one sitting above the right kidney, and one above the left kidney - performs complicated and life-maintaining jobs for the body. They produce cortisone, which guides the metabolism of sugars, proteins and fats, and limits body inflammation. They make other hormones that regulate body sodium and potassium levels and keep blood pressure from plummeting. And they make hormones like adrenalin, which keeps us on our toes when danger threatens. Adrenal-gland shutdown does kill if left untreated. Ninety percent of the glands have to be destroyed before the body begins to fall apart.


Fatigue and muscle weakness are two prominent symptoms of Addison's disease. Appetite disappears. Nausea, vomiting and weight loss are common. Blood pressure falls. Body stores of sodium become depleted, but body potassium rises.


In the old days, tuberculosis was the cause for most Addison's cases. Today, the cause is believed to be an immune attack on the glands.


Treatment for Addison's is straightforward: Replace the missing hormones. Prednisone is one often chosen. Treatment is for life. Your weight gain is not entirely due to prednisone. You are getting a dose that replaces the missing hormone, the same dose your glands would provide for you. If weight gain is a big problem, you have to increase your physical activity and decrease your calories. Weight loss will help with diabetes control.



Monday, August 17, 2009

Invisible Chronic Illness: Addison’s Disease

Our own Robin (staticnrg)'s blog - - is mentioned at the end!

This week the Grand Round will be hosted by Invisible Illness Week, a blog dedicated to the National Invisible  Ilness Week, which runs September 14 -20, 2009. The purpose:

National Invisible Chronic Illness Awareness Week  (..) is a worldwide effort to bring together people who live with invisible chronic illness and those who love them. Organizations are encouraged to educate the general public, churches, healthcare professionals and government officials about the impact of living with a chronic illness that is not visually apparent.

The theme of the Grand Round is, not very surprisingly: Invisible chronic Illness.

I won’t write about this professionally -being a librarian-, but I will speak from my own experience.

As many of you know, I’ve the chronic illness Addison’s Disease. Not that I feel ill. It doesn’t affect me, really… Not anymore.. I think.

But many people with Addison’s disease suffer silently from this disease. And like many other diseases this disease is seldomly understood by partners, colleagues, friends ….. and doctors.

Before I explain more about Addison’s disease, first let me say that almost every disease is “invisible” to others. People can never fully understand what an illness means to someone suffering from it.

Ball-and-stick model of the cortisol (hydrocor...

Cortisol, Image via Wikipedia

Patients with Addison’s disease make no or too small amounts of cortisol, a hormone made by the adrenal cortex. Cortisol has a bad reputation as the stress hormone among many people. It doesn’t deserve this reputation as this hormone is vital to life. Corticosteroids are involved in a wide range of physiologic systems such as stress response, immune response and regulation of inflammation, carbohydrate metabolism, protein catabolism, blood electrolyte levels, and behavior (Wikipedia)

Too much of this hormone causes Cushing’s disease, too little causes Addison’s disease. If you want to know what Cushing does to your body and mind, then please read the letter of Kate when she was first diagnosed with Cushing’s, at Robin’s “Survive the Journey”.

Here, I will confine myself to Addison’s disease. It is a very good example of an invisible yet serious disease.

There are 3 forms of Addison: primary (defect in the adrenal cortex itself, often also leading to a defect in aldosteron production), secondary Addison (by a defect in the hypophysis or hypothalamus) and iatrogenic Addison (caused by overtreatment with corticosteroids)

Here some reasons why the illness, although “invisible”, can have great impact on your live.

1. Diagnosis.

Diagnosis is often a challenge, especially in patients with primary Addison, most of whom look healthy because of their pigmented skin. Nowadays, the main cause of primary Addison’s disease is immune destruction of the adrenal cortex. This has often a slow onset and in 50% of the patients the diagnosis takes more than 2, sometimes even more than 10 years [1]. 38% of the patients even experience vague complaints, that can later be attributed to Addison, during 11->30 years before diagnosis [1].

Before the diagnosis is made, people with Addison’s Disease often feel extremely tired and miserable. Even when the disease fully manifests itself the symptoms are largely vague and aspecific. The most common symptoms are fatigue, dizziness, muscle weakness, weight loss, difficulty in standing up, vomiting, anxiety, diarrhea, headache, sweating, changes in mood and personality, and joint and muscle pains. Often the symptoms aren’t taken seriously (enough) or the illness is mistaken for anorexia or depression.

My secondary Addison was the consequence of an injury to the pituitary gland as result of heavy blood loss during complicated childbirth (see previous post). The week between the cause and the diagnosis of the disease, was the most terrible week of my life. I felt awful, weak, (well I lost >3 liters of blood to start with), couldn’t give breast milk (no prolactin), and I disgusted food so much, you can’t imagine. I couldn’t get anything down my throat, only the look of it made me vomit. And I felt so bad not being able to care for the baby, but I just couldn’t. I couldn’t even stand for more then a few minutes, couldn’t walk.  And then there was unstoppable diarrhea, dizzyness, and speaking with double tongue. And practically no one took it seriously, not the gynaecologists, not the nurses, not the paediatricians, nor my friends or family.

But this was only one week. How would it have been if it durated 5 or 10 years?

2. Grieve and adaptation.

Once the disease is diagnosed you have to learn to live with a body that has let you down (grieve) and you have to learn to become confident again (adapt). You also have to find a new balance. I’ve lost a few hormones overnight (ACTH, cortisol, thyroid hormone, growth hormone, prolactin, gonadotrope hormones) and believe me, it took me a few years to feel reasonable normal again. It is quite surprising how badly I was informed. Very little information about the risk of an Addisonian crises, the dosing of cortisol under various conditions.
It was also confronting how little people wanted to know about the disease or what I had been through. Visitors after the birth wanted me to be euphoric and didn’t want me to go into any detail of what had happened. They cut me short by saying: “But you have a lovely baby”. Somebody cried that she didn’t want to hear it. So I stopped trying to speak about it.

I took no sick leave, immediately went back to work. My boss – a nephrologist, never asked after my health, not once.

As I said it took a few years before my “come-back”. I didn’t feel myself. It was as if I couldn’t think, as if my head was filled with cottonwool. Afterwards I think the main reason for improval was the reduction of the cortisol from 30 mg to 12.5 per day and the use of DHEAs plus that I regained confidence in myself.

3. Comorbidity

With cortisol I lost some other hormones which are also essential. Patients with primary Addison often miss aldosteron as well, which makes them more liable for an Addisonian crisis. Primary Addisonians may also have other immune diseases, like autoimmune thyroid disease, gonadal failure, type 1 diabetes and vitiligo.

4. Addisonian crisis

An addisonian crisis is an emergency situation, with possible fatal outcome, associated mainly with an acute deficiency of the glucocorticoid cortisol. This occurs in (extremely) stressful situations. Some Addisonpatients are more prone to it than others. You can -and should – take precautions, like wearing alert bracelets or necklaces, so that emergency personnel can identify adrenal insufficiency and provide stress doses of steroids in the event of trauma, surgery, or hospitalization.

Some Addisonians fear these crises so much that they dear not walk or run alone. Many Addison patients don’t go to a country far away, some don’t even pass the border (and you know the Netherlands aren’t that big).

5. Addison’s disease can be treated but not cured.

Addison patients are treated with corticosteroids like hydrocortisone and are substituted with other hormones that they may lack. Without treatment, the disease is lethal, with treatment the disease is not cured. I do feel all right now, but many of my fellow patients don’t. I think that the following excerpt from a Seminar of Wiebke Arlt and Bruno Allolio about adrenal insufficiency [2] makes this very clear.

Despite adequate glucocorticoid and mineralocorticoid replacement, health-related quality of life is greatly impaired in patients with primary and secondary adrenal insufficiency. Predominant complaints are fatigue, lack of energy, depression, and anxiety. In addition, affected women frequently complain about impaired libido. In a survey of 91 individuals, 50% of patients with primary adrenal insufficiency considered themselves unfit to work and 30% needed household help. In another survey of 88 individuals the number of patients who received disablility pensions was two to three times higher than in the general population. The adverse effect of chronic adrenal insufficiency on health-related quality of life is comparable to that of congestive heart failure. However, fine-tuning of glucocorticoid replacement leaves only a narrow margin for improvement, and changes in timing or dose do not result in improved wellbeing.


  1. Zelissen PM. Addison patients in the Netherlands: medical report of the survey. The Hague: Dutch Addison Society, 1994.
  2. Wiebke Arlt, Bruno Allolio. Adrenal Insufficiency, Lancet 2003; 361: 1881–93 , full text on

Earlier posts on the subject:

Related articles by Zemanta


Sunday, August 16, 2009

Thanks! RT @staticnrg: Have you found website? Also, message/support boards?

Saturday, August 15, 2009

@llama3234 You're very welcome :)

Saturday, August 15, 2009

3 new Cushing's bios added. dx include 1 pituitary, 2 undiagnosed

Saturday, August 15, 2009

Cushing's locations page updated, 3 new people added.

Saturday, August 15, 2009

Not staticnrg but... Great Minds Think Alike RT @llama3234: @staticnrg meant to ask what does gmta mean? Lol

Wednesday, August 12, 2009

Who discovered Addisons Disease?

PRLog (Press Release) – Aug 11, 2009 – Thomas Addison was born in Longbenton, near Newcastle in 1793, the same year that Marie Antoinette was found guilty of treason and was beheaded on the guillotine. He chose a remarkably similar career path to Hodgkins (Hodgkin’s Disease) and Bright (Bright’s Disease), graduating from Edinburgh University (1815), and then moving back to London to pursue a medical career at Guy’s Hospital for the Incurables (1820). This hospital was founded in 1726, mainly as an overflow hospital for the neighbouring St Thomas's, which was working beyond its capacity. It maintained an emphasis on materia medica and medical treatment rather than on surgery, which remained the St Thomas's speciality. Addison was appointed assistant physician to the hospital in 1824, and lecturer in charge of materia medica three years later. It was 1827, the same year that Ludwig Beethoven died in Vienna following complications of pneumonia and dropsy.

Of passing interest is the fact that Addison like Beethoven, suffered from severe depression, developed deafness and was a brilliant teacher. But the similarity ends there. In 1802, Beethoven wrote the famous "Heiligenstädter Testament” to his two brothers, in which he confessed his misery and his wish to commit suicide. He of course recovered, but Addison’s depression deteriorated and it is less known that he eventually committed suicide by jumping out of an upstairs window and fracturing his skull. Addison remained shy and introspective and consequently built up a poor practice. He pioneered worked on the adrenal glands and in 1849, noted that tuberculosis was found at autopsy in 70 to 90 percent of cases of adrenal insufficiency. In 1855, he published a controversial paper on ‘the constitutional and local effects of the suprarenal capsule’, to which many Scottish physicians, particularly Bennett disagreed with the findings. It was largely because of Trousseau (Trousseau’s Sign) that the paper was eventually validated and this physician is remembered for calling the disease of adrenal insufficiency after Thomas Addison. He is also accredited for giving medical eponyms to both Graves and Hodgkin’s disease. Addison worked with many famous physicians during his period in Guy’s, including William Gull (Gull’s disease), with whom he first described the condition xanthoma diabeticorum. We remember Gull for describing the condition of hypothyroidism and for unsuccessfully treating Prince Albert after he contracted typhoid in 1861.Queen Victoria never recovered from her grief after his death and withdrew from social activities and dressed in black for many years thereafter. He also worked with Bright (Bright’s disease), with whom he tried to publish a medical text and is remembered for having contributed to most of the work on the volume.

He was the first doctor to describe circumscribed scleroderma, which is still known as Addison’s keloid in some parts of the world. He was also the first doctor to show that pneumonia occurred in the alveolar tissue and not in the interstitial cells. He described the progressive dysfunction of the adrenal gland associated with changes in brain tissue. This condition was later researched by the Austrian neurologist Schilder who noted loss of the myelin sheath surrounding nerve cells in the brain and the condition became known as Adrenoleukodystrophy or Addison –Schilder Disease.

Addison jumped to his death in 1860, the same year that Senator William Gwin of California and William H. Russell, of Missouri businessman bought 400 fast horses, hired 80 riders, and established the Pony Express Service. .

# # #

Dr. Patrick Treacy is Medical Director of Ailesbury Clinics Ltd. He is Chairman of the Irish Association of Cosmetic Doctors and Irish Regional Representative of the BACD. He is a Medical Advisor to the UK's largest cosmetic website Consulting Rooms.


Monday, August 10, 2009

Addison's CD

This looks like this might be good for those of us with secondary Addison's, too!


2009 Conquering Addison's Disease - The Empowered Patient's Complete Reference - Diagnosis, Treatment Options, Prognosis (Two CD-ROM Set)

2009 Conquering Addison's Disease - The Emp...
by PM Medical Health News

This up-to-date and comprehensive set of two CD-ROM discs provides a superb collection of official Federal government documents on the subject of Addison's Disease. Your adrenal glands are just above your kidneys. The outside layer of these glands makes hormones that help your body respond to stress and regulate your blood pressure and water and salt balance. Addison's disease occurs if the adrenal glands don't make enough of these hormones. For patients, practical information is provided in clearly written patient education documents.


For medical professionals, doctor reference tools and texts have detailed technical information and clinical background material. There is no other reference that is as fast, convenient, and portable - everything you need to know, from the federal sources you trust. This thoroughly researched collection presents vital information from many authoritative sources: Food and Drug Administration (FDA), Centers for Disease Control (CDC), National Institutes of Health (NIH) and the relevant institute for this disease, and others.


In addition to the comprehensive disease-specific coverage, this disc set also includes our Medical Encyclopedia, a $19.95 value! The Encyclopedia presents a collection of official documents about a wide range of medical topics, diseases, illnesses, health and wellness. There is vital information from the National Institutes of Health (NIH), the Centers for Disease Control (CDC), National Cancer Institute, and more. Topics covered include: major diseases, including cancer, heart and vascular disease, stroke, blood diseases and disorders, lung diseases, and neurological disorders such as dementia and epilepsy * CDC Health Topics A to Z, Foodborne Illnesses, Infants and Children, Injuries, Occupational Health, Older Adults, Women * CDC Travelers' Health - Destinations, Vaccinations, Diseases, Mosquito, Tick, Food, Water, Clinics, Yellow Book, Children, Airplanes, Cruise Ships, Special Needs, Relief Workers, * Dietary Guidelines * NIH A to Z from abnormalities to X-rays. Since navigating the Internet to find additional non-governmental medical information can be confusing, we've also provided our exclusive "Guide to Leading Medical Websites" with updated links to 67 of the best sites for medical information! Built-in weblinks let you quickly check for the latest clinical updates directly from the government and the best commercial portals, news sites, reference/textbook/non-commercial portals, and health organizations.


This CD-ROM set has tens of thousands of pages reproduced using Adobe Acrobat PDF software. Advanced search and indexing features of the current version of Adobe Reader provide a complete full-text index. This enables the user to search all the files on the disc at one time for words or phrases using just one search command! The Acrobat cataloging technology adds enormous value and uncommon functionality to this impressive collection of medical documents and material. Our CD-ROMs are privately-compiled collections of official public domain U.S. government files and documents - they are not produced by the federal government. They are designed to provide a convenient user-friendly reference work, utilizing the benefits of the Acrobat format to uniformly present thousands of pages that can be rapidly reviewed or printed without untold hours of tedious searching and downloading. This book-on-a-disc makes a superb reference work and educational tool for patients and their families, physicians, and other medical professionals. (Information on this CD-ROM product is not a substitute for professional medical advice; of course, readers are urged to consult with a professional health care provider for any suspected illness.)

Saturday, August 08, 2009

New helpful doctor added to Maryland. Submitted by pituitary patient.

Friday, August 07, 2009


DEAR DR. DONOHUE: I love salt and salty foods. My wife says I am going to have high blood pressure because I eat so much salt. Will I? - F.M.

For health, people need one-tenth of a teaspoon of salt daily. In this part of the world, we get many times that amount without ever using a salt shaker, so salty is the food we eat.

A few unusual illnesses feature salt-craving. One of them is Addison's disease, where the adrenal glands go kaput and fail to make hormones that keep the body's salt level where it should be. I am not suggesting you have Addison's disease. It brings other, dramatic symptoms that would make you aware of it.
Not everyone is sensitive to the blood pressure rise that salt can generate. However, it would be a good idea to reduce the amount of salt you're getting. With age, blood pressure, even in the healthiest people, tends to rise, and your infatuation with salt puts you at greater risk for a blood pressure rise.