Invisible Chronic Illness: Addison’s Disease

17 08 2009

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.

well-ville.com/images/adrenalQA2.jpg

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.

References

  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 http://www.addisonssupport.com/Documentation/adrenal-insufficiency-2003.pdf

Earlier posts on the subject:

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23 responses

17 08 2009
rlbates

Very nice post, Laika. I’m glad yours is well managed. Best to you.

18 08 2009
Grand Rounds Blog Carnival - Vol 5.47 Invisible Illness : Invisible Illness Awareness Week

[...] Addison’s Disease is the topic of Laika’s MedLibLog with a detailed post on the illness and her experience. [...]

19 08 2009
Grand Rounds Blog Carnival - Vol 5.47 Invisible Illness | Dr Shock MD PhD

[...] Invisible Chronic Illness: Addison’s Disease 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. [...]

5 09 2009
Grace RN NJ

Hi, I’m fairly new to Addison’s diagnosed July this year. While I had a massive postpartum hemorrhage in 1980, and felt quite ill for a long time after, my secondary AD didn’t get diagnosed for almost 29 years. My endo thinks it was caused by a combination of the postpartum bleed and an auto-immune disorder.

Despite being a RN (I live in NJ, USA) I am at a complete loss as to actually living with this disease, and currently on a 6 week leave of absence after hit what felt like rock bottom 2 weeks ago. My job is/was fulltime+, involved a lot of walking and extremely stressful; despite all that I love(d) it and hope to return even if part time for a while.

Thank you for your blog, will follow and try to learn the ‘new normal’.

16 10 2009
Adela,FL US

Hi Laika- thanks for writing this article, is nice to know that I’m not alone. I was diagnosed a year ago after having a crisis and I’m still trying to find “my new normal level”. My doctors would like me to go on disability, but I can’t afford it. I was very active, but today I go very slow. These days I’m having more good days – but still a big challenge. Keep well – Blessings.

9 02 2010
Larry

Hi Laika,

I just got dx’d last month with Addison’s. I went back to work immediately after a two week stay in the hospital. I still don’t know if I made the right decision. I am more alert than I was before my last hospital visit but I am afraid to do a whole lot. I have Type 2 diabetes as well so I have a lot of new drugs to go with all my old drugs. This sucks. I just found out about Addison’s blogs tonite and am happy to finally have a place to talk about this and read other people’s stories. THanks for sharing.

12 04 2010
Irreversible Effects of Previous Cortisol Excess on Cognitive Functions in Cushing’s Disease « Laika’s MedLibLog

[...] is caused by the opposite: the lack of cortisol. For more background information on both see this previous post. Ramona Bates MD, of Suture for a Living, has written an excellent review (in plain language) about [...]

23 04 2010
maureen

Great article. I was diagnosed with secondary Addison’s in 2001 and have been on disabillity since. I suffer with dibilitating fatigue and weakness daily. Thanks for all this information that I can forward to family.
maureen

17 09 2010
Eryn

Thanks–this is the best article I’ve found yet (in 6 years of diagnosis) to explain Addison’s to someone without it.

I like your comment:
“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).”

For the irony–my husband and I are overseas missionaries :)

12 03 2011
frances fishwick

HI MY DAUGHTER WA S DIAGNOSED TWENTY TWO YEARS AGO ALSO HAS UNDER ACTIVE THYROID MY OTHER DAUGHTER IS DIABETICT AND COELIAC BOTH HAVE THEIR ILNESS UNDER CONTROL AND LEAD NORMAL LIVES HOWEVER THIS TOOK A LONG TIME FOR BOTH OF THEM AND A LOT OF PROBLEMS ALONG THE WAY .

1 07 2011
C.

I myself have Addison’s Disease and have been looking for an alternative to taking Hydrocortisone 5mg, and Fludrocortisone 0.1 tablets. Is there any way that I can “wean” myself slowly from these medications? I have read that Licorice Root acts like Fludrocortisone, but is there anything that acts like Hydrocortisone? Email me at leodstar@ymail.com.

31 08 2011
Gezond gewicht

Thank you very much for this post on Addison’s Disease. Indeed, I only knew Cortisol as the ‘stress hormone’…

23 09 2012
Weight Loss Surgery

I am really impressed by your story. As an experienced bariatric surgeon, I enjoy reading the tales & journey’s of patient’s after surgery. It helps me understand the common, yet unique experience each patient goes through. Congratulations on your health and happiness. Rock on!

15 11 2012
Brenda Delawder

I enjoyed reading your story, I always thought I was the only 1 like me. I had severe tiredness,anemia(which was treated with inferon which gave me serum sickness-a horror story), I was diagnosed by my family and friends as just being terminally lazy, I would forget to eat for days, and I actually raised my babies in my bed.
I went to a hematology/oncology doctor for him to tell us about my sisters cancer and instead of talking about her, he grabbed me up and started tests immediately, after a year of tests he found the thyroid issue, then 8 years later the ER staff found the Addison’s disease by nearly killing me. Thank God they did, I have been able to have an almost normal life ever since, I went to college at age 40+ and gained my dream job of Computer skills instructor, I still bottom out occasionally and have to make a quick choice of sit down or fall down but overall thanks to a few good doctors I have a great life

3 12 2012
musicloveandlaughter

http://smwebb1984.blogspot.co.uk/ I have recently been diagnosed with Addisons disease after being treated for epilepsy for many years. It’s a great blog you have here, I’ve just started one myself.

18 12 2012
Sandy Trawick

I was diagnosed with addisones at age 9. I am now 33. The way I deal with it has taken many years to perfect.. Low no drama lifestyle. Which means less steroid. Bcuz I’m not using mine up as fast. I even have to save my big energy days for shopping, and activities.. It’s all about balance.. I would be glad to MSG anyone who is afraid and help with understanding this disease. Depression goes along with it, just know your not alone.. Flowergurlbyday@yahoo.com

5 01 2013
john

i was diagnosed 4 years ago after knee op i contacted double phemonia and was told iwould not make it throu the night i owe my life to a trainee doctor who told my wife iwas c risp a nd he gave me out of the blue ashot of hydroquterstone within the hour iwas eating but it took 4 months after losing 5 stone before i was diagnoised with addisons

21 03 2013
tina

This is one of the best article I have read since I was diagnosed a year ago. I love the way you explained how the disease affects us. Because I feel good now, sometimes I want to believe I don’t have this. This article reminds me how I use to feel better steroids. Thanks again.

26 03 2013
keely parry

HI. I was diagnosed 9 years ago with addisons disease and underactive thyroid. At the moment i am experiencing alot of tiredness, any suggestions.

8 04 2013
Wendy

Excellent article. My 14 year old is waiting to go to the endo for further testing for Addison’s. She’s been thought to have everything from PMDD to exercise induced asthma (she crashes after working out hard) to low blood problems (not uncommon for her glucose to climb to 184 after eating oatmeal and drop to 60s within an hour), she seems to get an upper respiratory infection every 1 1/2 months that she can’t seem to shake without steroids, they gave her 3 different low dose SRRIs to help with the “PMDD”, one caused her to have a meltdown/anxiety attack, another created a situation where she passed out and had severe back and leg pain / numbness, third seems to be aggrevating symptoms more than helping.

It is difficult to watch her sufferer and Doctors seem to be missing the connection or not acting with as much urgency as I want.

4 05 2013
Jo

I’ve been diagnosed last year march 2011

In having my ups and downs, in and out of hospital! Some dr know about my diseas but most of them don’t! In the same week of being diagnosed with Addison they said I have endometriosis as well as hoshimotto thyroid problems celiac ;( and the list seems to be getting bigger and bigger! I’ve used all my sick days at work, they hate me and would love to fire me! Today I had to leave work with an anxiety attack! I’m feeling very depressed and just feel like I’ve hit a wall! And don’t know what to do! The dr have give me Ativan 1 mg for anxiety but I get really moody coming off them ;(( and feel like i need antidepressants!
what to do! Just feel like giving up ;( especially how it’s effecting my every day life and especially work??? I feel I just can’t go back to work on Monday! I’m anxious thinking about going back! And ideas

Desperate ;(

4 06 2013
Phyllis Andrews

Hi Laika…….Thank you for sharing your experience for the education of us all. Could you post the bloodwork and numbers which allowed you to be diagnosed with Addisons? Which test wereyou guven and what were the results and normal ranges? Thank you very much.
Phyllis

21 09 2013
Debbie Isles

I have to say it’s always really good to read peoples experiences and feelings about Addisons disease…
Did you know that both people and Dogs can contract this disease and they are both treated in exactly the same way with the same drugs..My beloved Border Collie was diagnosed earlier this year and just reading how people feel makes it easier for me to help her and manage her condition..she can’t tell me exactly how she feels…but reading peoples experiences makes it so much easier to see when she’s tired or vague.

Thanks so much for sharing

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