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Addison's Disease Message Board

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Elena & Emma,

Thanks so much for your responses. I'm already doing what both of you suggested.. I do the before bed snack, and I also take prednisone for my last dose, given it's longer acting properties. It's just a rollercoaster. My sleep, energy, and mood are all of the map it seems. This has all gotten A LOT worse for me over the past year because now I'm deep in the throws of perimenopause.

I'm not sure of your ages, but are either of you in perimenopause or menopause, or have already gone through? I'm 42 and with the decline of sex hormones, and no adrenal function to help out here ... very very difficult.
Would love to hear from anyone on this - as my doctor is fairly clueless. I've done quite a bit of research and from everything I've read, it says that steroids ought to be increased when sex hormones are declining, or when on hormone replacement therapy.

Thanks again.

Hi Elena,

I do remember that I felt better while taking DHEA. Can't exactly put my finger on what it was, but better. Then again, could've been something else as I've tried many different supplements. However, I was only taking 5-10 mg. I'd love to hear how you feel after taking it for awhile. The more I read about it.. seems soooo vitally important - DHEA production is totally suppressed when taking cortisone.

You are so fortunate that you're able to take only 15 mg of HC. I would be 6 feet under on that dose. My dosing has fluctuated a lot in the past few years, as I'm trying to arrive upon the right "fit". As I mentioned in previous post, I've had a lot of emotional and financial stress in the past couple of years. I went through a very painful and heartbreaking experience with my now ex-husband. This had a HUGE and somewhat devastating effect on my physical condition. God, I wish I could go back, as my health greatly deteriorated since this trauma and some of it seems irreversible. I'm 5'3 and only weigh 80 lbs. I lost a lot of weight & now cannot gain at all. I eat all of the time & have lots of problems with blood sugar control, but can't gain a pound. This is extremely hard on my head because we all want to be loved and touched, and I cant imagine it now. I'm like skin & bones. Anyway, I'm a huge believer in the mind/body connection.. I'm living proof of it for sure, so do your best to keep your chin to the sky.. love yourself * always believe in yourself.

As for what I take now in the way of meds is 5 mg prednisone (equivalent to 20 mg cortisone), and 15 mg HC. So I take 35 mg/daily of cortisol replacement.. and sometimes a bit more if I have overt symptoms of being low. I've been in "adrenal crisis" a number of times so I do all I can to avoid trips to the ER. Most there don't even know what Addison's Disease is. Although it's quite serious and life-threatening, my experience has been that few doctors are familiar with it.

Elena, I'm not encouraging you to increase your meds since you said that you feel better now that you've reduced. But it's curious to me that you are able to get by on so little, and you are fine from 1pm until 8am the next day without any cortisone? So I think that your adrenals are still producing some cortisol. Yeah!! But because you are still having so much fatigue and headaches, makes me think that you are under medicated, as both are main symptoms of low cortisol. But if you feel better on less, more power to ya.

I was diagnosed in 2007 and for the first few years, I was on 25 mg HC, but over time (and with more stress), my adrenals ended up totally suppressed and so my needs for replacement also increased. I used to not be aware of so many symptoms, and now I can't go 15 minutes past when my next dose is due .. I feel it and know when it's time. Kind of freaks me out sometimes so I have to take a deep breath and calm my mind, etc. With an illness like this, "acceptance" and belief in a Higher Power are the name of the game.

I would stay away from prednisone for now .. I don't think it's a good idea to have your body constantly bathed in cortisol. There are a lot of negative side effects of this, and it's not at all in line with the body's natural cortisol rhythm. Nonetheless, there is a time and a place and it's been a life-saver for me. I burn through hydrocortisone very quickly. My endo believes that I've become resistant to it and I do have a better result with prednisone, but I'm not ready to switch over entirely to prednisone.

So continue to take care of yourself Elena. Sounds like you've got A LOT going on and it's sooooo important to not overdo with this condition ... trust me on this. You do not want to burn up any adrenal reserve that you still have. You are so young, you've got your whole life ahead of you (although it sounds like you've already been through quite a bit) I would give anything to go back in time and do things differently which I'm sure would've prevented me from getting this sick. I was an overachiever in college and pushed myself with a lot of things. Too much exercise, poor diet, lots of coffee and sweets, not enough rest, etc. Anyway, I'm only sharing this with you because you sound wise beyond your years, and I wish I had known years ago how quickly things can deteriorate when you've got Adrenal Insufficiency.

Chillax and chin to the sky .. don't ever forget the power of the mind. :)

Best to u,

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