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Addison's Disease Message Board

advice please

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Old 04-15-2016, 09:20 AM   #1
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rikaa HB User
advice please


This is my first post as I am new to the forum. just looking for some help or advise if possible. Here's my situation so far just to get an idea:

In November 2015 i had a cortisol check at my doctors and found my cortisol levels are too low. I was referred to my local hospital to have a ATCH test (i think that is what its called) in December and was told that again the cortisol levels were too low but more of a borderline result. After this my doctor gave me an emergency pack of steriods ( hydrocortisone 10mg) to take twice a day if i catch a bug or am feeling unwell. I havent heard anything since and have not had a diagnosis yet so i went back to my doctors last week to find out what is going on. My doctor told me that i have been put on an urgent waiting list for an appointment with a consultant at the endocrine department at the hospital and that i have Addisons disease. She also told me that i need to take the steroids at the moment as i have a cold.

I am so confused as to why i am being told that i have Addisons disease but i havent got a diagnosis? Is this what the appointment is for with the consultant? What are the effects of taking the steroids long term?

I am so tired and just want this sorted out so i can get the right treatment and feel better.

Also i am 21 years old and my mum has Addisons disease and takes the same tablets as i am given.

Any help or advice would be great!

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Old 04-15-2016, 10:06 AM   #2
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rikaa HB User
Re: advice please

Also i was told there is a five month waiting time and thats on the list of urgent people?

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Old 04-17-2016, 08:44 AM   #3
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Re: advice please

There are quite a number of pathological reasons why cortisol levels would become insufficient.. but when it is insufficient, the resulting condition is called Addisons disease. Because there are a number of pathological conditions that can cause low cortisol leveles, further test is needed.

There could possibly be genetic factor behind it.. if you and yr mom have it, it makes it even more probable that you have gotten a genetic factor causing the symptoms from your mom. This requires further hormonal and genetic testing to pinpoint the exact reason

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Old 12-14-2016, 06:04 PM   #4
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Diefen HB User
Re: advice please

Five months to figure this out is a little scary. If you have any medical emergency it is critical they know your situation, to the extent anyone knows it.

As regards the long term effects of cortisone, if it is managed well it shouldn't cause effects as it is hopefully replacing what your body is failing to make on its own.

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Old 01-18-2017, 10:12 AM   #5
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Re: advice please

Hey there,

How did you end up going? I noticed that hopefully by now you would have had your appointment so anything I say is going to be useless, but the urgent wait list here where I live is "within 12 months". Ridiculous isn't it?

I hope everything is sorted for you now!

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