As recently as ten years ago my CAH sister would ask her endocrinologists whether she needed extra calcium supplements and they all but laughed at her. She now has osteoporosis.

On a separate note this very same sister is at this moment facing double knee replacements due to possible osteonecrosis induced by longterm cortciosteroids. Look up any osteonecrosis website and you will see that either high doses or longterm corticosteroids are a causative agent.

 

Do not rely on doctors, dieticians or many in the ’traditional’ health arena to give you any health advice apart from their sometimes blinkered unilateral perspective. We have to educate ourselves. We have a lifelong chronic condition. We now have the means to educate ourselves to help ourselves have a better ageing process.

 

Wan you say that: “When I was born 31 yrs ago ........ The subject was never brought up about me exercising and any increased stress that may or may not cause. There was nothing about taking meds at certain times of the day, I took them when I got up and when I went to bed, I wasn’t ’mimicking a rhythm’  and yet everything was fine ”. 

 

This is exactly how it was addressed back then and this is what we are trying to redress now. This ‘head in the sand’ attitude which I know my parents were certainly indoctrinated in just doesn’t work now. Your statement that exercising, dosing times etc. were never brought up is exactly how it was and I wonder if it would still be that way if patients weren’t starting to push some of these boundaries and agitate for better care.

 

Doctors do take notice when we are informed. The Megan of old, used to go to her endocrinologist appointments and not say ‘boo to a goose”.

Endo “How have you been?”

Megan “Oh alright I suppose” (Feeling very embarrassed).

Endo “Let me take your blood pressure” 

Megan would dutifully hold out her arm.

Endo “Well your blood levels look quite good this time, let’s continue taking ……….. and we’ll see you in six months”.

Megan “OK”.

 

These days the scenario is totally different. I have claimed my right to know and participate in the process. I actively go to my endo prepared for my appointments with questions,  discuss dosages and back up my reasoning for lowering doses or changing medications, I look over the test results with my endo - he prints me off copies, I take some new research papers in to show him (only from medical research journals, most other printed material has no credence with doctors).

 

When my journey for CAH knowledge started in 2001, I started on this board and a couple of others. Then I went to the university medical libraries and immersed myself in journal research articles – hundreds of them. You find the theory there but you don’t find the linking together of life related events and only in discussing can we see if there are common threads which may yet not have been explored by the researchers.

 

I understand we should not spend our time ‘naval gazing’ and this board (I’m sure for most) is only one part of our busy productive lives but http://congenitaladrenalhyperplasia.org/mb  has taught me lot.