It has taken us much longer than we anticipated, despite having recruited several additional volunteers for the data entry.   But we are close to completion and hope to present the overall results at an endocrine conference in March 2005.

Over-medicated or under-medicated?

The overall results show that people with Addison’s experience high levels of fatigue and other ongoing symptoms which are not well controlled by medication.  The preliminary findings to this effect were reported in the webnewsletter in 2004 and have been confirmed. 

Many of the ongoing symptoms we experience are characteristic of pre-diagnosis illness, such as salt cravings and muscle weakness.  But some appear to be signs of over-medication, such as fluid retention, easy bruising and insomnia.  The survey team are doing further analytical breakdowns of the results to try and establish if those people who report signs of over-medication are, in fact, on higher doses. 

Reading through the individual responses suggests that it may be more complex than that, as people can respond to similar levels of medication in quite different ways.  For example, poor wound healing is a sign of over-medication.  Yet among the international results, we found two Canadians with a similar build (Body Mass Index) taking an almost identical dose who reported quite different responses to surgery.  One made an excellent recovery where the other had serious problems with poor wound healing and bruising from the surgery.

A well-matched control group in our friends

The friends who you found to complete the questionnaire for you proved to be an extremely well-matched control group by age, gender and overall profile.  Compared to our control group, people with Addison’s are less likely to be employed (by about 25%) and those who are employed generally work fewer hours.  

We rate our overall health and fitness as worse than our friends (by about one-third), but we manage to participate in sport and recreational activities at a similar level.  You may recall from the information we shared in the webnewsletter in 2004 that a few individuals attain exceptional levels of fitness despite high levels of fatigue.