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Addison's Disease Message Board
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Old 01-29-2013, 03:16 PM   #1
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How to get my life back and stay out of bed.

I have good days. Then if I do something I want to do that takes energy, it can cost me several days in bed. Should I take more cortisol when I am doing the fun thing, or after to recover? I am trying to have a life here. I am on 20mgs of HC and 60 mgs of westhroid.
The best part of the last 12 years have been a huge struggle just to be able to do some of the basic things. I want to recover my life.
I also read that people on thyroid should take double cortisol.
I have a really lousy endo doc that doesn't understand this at all. I have adrenal insufficiency but I sometimes don't think they work at all.
Have any of you recovered your life??

 
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Old 01-29-2013, 04:44 PM   #2
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Re: How to get my life back and stay out of bed.

Sounds like you need a new doc... you need someone prepared to do blood tests and officially diagnose you, if you feel that your adrenals dont work at all. Im not sure about the thyroid/AD relationship in regards to meds, but both definitely need to be taken into consideration. Im on 25mg a day (15/5/5), and sometimes take an extra 5mg per day during patches of fatigue. Try adjusting your dose a little bit yourself (I suggest going up 2.5 or 5mg for a couple of weeks) and see what, if any, difference it makes. If an improvement, continue this new dosage permanently (tell your doc when you see them). I've had AD long enough that I feel confident doing this myself without an endocrinologists advice (although i tell them when i see them, and they approve), as they can be difficult at times. Ive always had everchanging needs for dosage as I was growing and as my lifestyle has changed, so my doses have always needed changing too. If you want to try extra meds just when you know you are doing something high energy, take them on the day, not after.
From my own life, I can live fatigue free when my dosage is correct. If I am fatigued, something is wrong (e.g. I have another illness which is draining my energy, so I need more meds). When I am completely healthy = fatigue free and a drive for life!

Best of luck

 
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Old 01-29-2013, 05:00 PM   #3
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Re: How to get my life back and stay out of bed.

Elana, I have a diagnosis. My cortisol was tested at 5 in the morning two times, prior to my doctor putting me on cortisol.
I too manage it all myself. He gives me 30 per day and I can stress dose when I need to, but understanding when to do that is hard.
I am trying to figure that out. That is why I wonder should I take more when I am doing something and feeling good, or when I crash for the next two days?
I can hardly understand what a life could be that is not full of crashes. I need this so bad. Thanks.

 
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Old 01-29-2013, 07:13 PM   #4
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Re: How to get my life back and stay out of bed.

I read the title of this thread and said OMG! That's me! I know how you feel except you're getting out of bed more than me believe it or not.

What do we do? no life cathy

 
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Old 01-29-2013, 07:30 PM   #5
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Re: How to get my life back and stay out of bed.

Quote:
Originally Posted by no34evr View Post
I read the title of this thread and said OMG! That's me! I know how you feel except you're getting out of bed more than me believe it or not.

What do we do? no life cathy
Is that possible? I don't know. It seems forever that I lay here some days.
Are you on any meds? Diagnosis?

 
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Old 01-29-2013, 08:08 PM   #6
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Re: How to get my life back and stay out of bed.

Hi I started another thread on the Addison's board thanks cathy

 
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Old 01-29-2013, 10:13 PM   #7
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Re: How to get my life back and stay out of bed.

Well from my experience, I say to increase it on the days that you know you will be doing something higher energy, rather than once you have crashed. Or just try permanently increasing dosage, as it really should be able to cover days that require a lil more energy.

 
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