Support for Those Living with Adrenal Insufficiency

Signs and Symptoms Survey Results

Study Participants

AdrenalInsufficiency

Adrenal Insufficiency United (AIU) conducted a study to compare the symptoms and life experiences of those affected with Adrenal Insufficiency (AI) to with those without AI.  Data was collected using Survey Monkey.  Participants were found, in both the control and affected group, through Facebook.

The unaffected control group consisted of 471 individuals, 239 indicated that they were not genetically related to anyone with Adrenal Insufficiency.  One hundred sixteen were parents of those with Adrenal Insufficiency and twenty-two were siblings.  AIU asked for this information due to suspicions that there may be carrier traits associated with Adrenal Insufficiency.  Others in the control group were married to someone with AI, not immediate family members or (5) who chose not to answer.

The Affected group consisted of 441 individuals with Adrenal Insufficiency.  The top conditions causing Adrenal Insufficiency were (in order of greatest to least) Addison’s, Congenital Adrenal Hyperplasia, Autoimmune, Unknown, Cushing’s and Pituitary Tumors.

Adrenal Insufficiency United is not a medical or scientific group.  However, we feel the number of participants helps to validate the findings of our study.

Control Group = 471
239 not genetically related
116 parents
22 siblings
67 related in another way (cousin, aunt, grandparent etc.)
14 married or live with
38 carrier
5 chose not to answer

SURVEY RESPONSES

Ability to Participate in Pleasurable activities

Survey respondents were asked to rate their ability to participate in pleasurable activities on a scale of 1-5.  One being that they had no limitations on their ability to participate in pleasurable activities and five that they were severely limited in their participate.  Six in the control group chose not to answer the question and eight in the affected group chose not to answer.

No definition of pleasurable activities was given leaving this up to the respondent to decide.
In the control group 81% reported that they had little or no limitations (scaled 1-2) on their participation vs 35% of the affected group.

Only 19% of the control group reported moderate to severe limitation compared to the affected group with 65% reporting moderate to severe limitations on their ability to participate in pleasurable activities.

Control Group      Affected Group

Not at all                                           58%                                        17%
2                                                          23%                                        18%
3                                                          13%                                        31%
4                                                            5%                                        28%
Severely Limited                                1%                                          6%
Ability to Participate in School or Work

Survey respondents were asked to rate their ability to participate in school or work on a scale of 1-5.  One being that they had no limitations on their ability to go to school or work and five that they were severely limited in their ability.  Fifteen in the control group chose not to answer the question and 24 in the affected group chose not to answer.

Only 10% of the control group reported moderate to severe limitation compared to almost 4 times the amount of the affected group with 39% reporting moderate to severe limitations on their ability to participate in pleasurable activities.  8% of survey participants in the control group chose to homeschool or work from home for personal, not medical reasons.

Control Group      Affected Group

No Effect                                          70%                       31%
2                                                         12%                       30%
3                                                           2%                         9%
4                                                         6%                        28%
Can’t work or go to school              2%                        2%

8% in the control group choose to homeschool for other reasons

Mental Health

Survey respondents were asked to rate their emotional health on a scale of 1-5.  One being that they had no issues and five that they had a diagnosis of depression or anxiety.  Four in the control group chose not to answer the question and fourteen in the affected group chose not to answer. No definition of “emotional health” was given.

In the control group 68% rated their health between (1-2) meaning that they felt their emotional health was very good compared to only 30% of the affected group.  In the control group 28% reported moderate to severe emotional health issues (4-5) compared to 40% of the affected group.

Control Group      Affected Group

1 (No issues)                                              42%                10%
2                                                                   26%                20%                                                                       3                                                                   15%                34%
4                                                                     4%                24%
5 (Diagnosis of depression or anxiety)  14%                16%

Physical Symptoms Reported

Survey participants were asked to check any symptoms experienced from a list of 47 different symptoms we provided.  Symptoms chosen were ones given by those affected by AI.  Sixty four in the the control group skipped the question and 32 in the affected group skipped the question.

Symptoms between the control and affected group were markedly different.  Those with AI consistently report more symptoms, with over 50% reporting symptoms in the top 5 categories.  In the control group the top 5 categories had between 22 – 32% reporting symptoms

The top symptom of those with Adrenal Insufficiency was being Easily Fatigued, 68% of respondents, compared to the number one complaint of Back pain in 32% of respondents in the control group.  The other top four symptoms in the affected group were salt cravings 58%, brain fog and/or trouble with concentration 54%, weight gain 51%, and stomach problems including pain and nausea 50%.

Another notable fact is that those Affected by AI share the same symptoms as the non affected, but with a higher percentage.  Top 5 symptoms for each group are in bold lettering.  (The Control Group rated both “easily fatigued” and “headaches/migraines” at 23%.)

Reported Symptoms        % of Control Group                % of Affected Group

Easily Fatigued                                    23%                                 68%
Salt Cravings                                        12%                                 56%
Brain Fog and/or Trouble                 21%                                 54%
with Concentration/Memory
Weight Gain                                         22%                                 51%
Stomach Problems:  Pain,                 16%                                 50%
upset, nausea.
Back Pain                                            32%                                  40%
Joint Pain                                           29%                                  48%
Allergies                                              27%                                  23%
Crave Sweets                                      26%                                  32%
Headaches/Migraines                       23%                                  26%
Other diagnosed conditions

Survey participants were asked to identify conditions for which they had received a diagnosis. (Except for Adrenal Insufficiency) both the control group and affected group had the same diagnosed conditions in similar percentages.  This questions was not answered by 129 in the control group and 108 in the affected group.

 Control Group                                Affected Group

Allergies                                                  45%                Thyroid Disease or disorders   53%
Depression                                              33%                Anxiety                                         35%
Anxiety                                                    30%                Depression                                   31%
Asthma                                                    21%                 Allergies                                        27%
Thyroid Disease or other disorders   19%                 Asthma                                          23%
Other information from the Control Group (these questions were only for those who live with someone affected by AI

When asked if the Adrenal Insufficiency of the their loved one cause them stress again on a scale of 1-5.  Forty percent of the control group indicated they felt moderate to severe stress.

1 (no stress)            19%
2                                15%
3                               27 %
4                               23%
5 (severe stress)    16%

Other information from the Affected Group

Time to get diagnosed from onset of symptoms (4 skipped):        41% a year or more

Diagnosing Physician (1 skipped):            Endocrinologist made diagnosis  62%

Does your Physician have enough knowledge to treat AI properly (6 skipped)
58% are happy with their physician and feel they are receiving the proper care.
20%  are not happy but are unable find another physician to treat them.
19% have physicians who may not have the knowledge, but are working to educate         themselves.
3%   can’t find a doctor.

Participants were invited to expand on their answers, add symptoms they experienced, or simply state their feelings.  Here are some of their responses.

This is the loneliest, most complex illness I have ever known of.

My doctor said I was the most difficult patient he has ever had….and he works at a research hospital!

This information was filled out from before I was started on the pump to replace cortisol in a circadian fashion.  Since then, all of the health issues have been resolved except for hypothyroidism which has improved significantly.  No treatment is required for anything else at this time and I can finally enjoy a full active life with my family.

After 20 years I’m so tired of having to explain this to medical personnel.  The need to be educated!

I have on 3 occasions been admitted to the A&E (ER) and been left for hours untreated.  I honestly thought I was going to die!  Now I have a letter from my specialist that I take with me.

I get no sympathy despite the fact that I feel very sick.  Everyone just thinks I’m fat and lazy.  I’m at the end of my rope.

I have problems getting health insurance.  The state high risk pool are triple that of a personal policy.  There needs to be something to help those of us who are paying our own way………..

I’m lucky that I’m able to be a stay at home mom so I can help at my daughter’s school and give her the injection when needed.  I don’t feel I can work because no one at school can give the injection.

Over the last 44 years of my life with Addison’s I’ve seen about 11 endocrinologists.  My current endocrinologist only has 5 patients with Addison’s, but he has actually told me that I know more about Addison’s, since I live with it every day.  He never rushes me and is willing to look into anything I ask about.  We need more endocrinologists like him!

The results of this survey clearly show that those with Adrenal Insufficiency experience more severe symptoms in almost every area of their lives than those without Adrenal Insufficiency.   We hope that these results will help illustrate the need for more funding and research in the treatment of Adrenal Insufficiency.

As a lay person I’ve done my best to present these survey results accurately and realize that this study is not scientific.  Still with the large amount of participants the results should not be ignored or discounted.  Thanks to all of you….both affected and non affected for taking this survey.

Jennifer Knap: AIU Executive Director

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