Another Introduction

Forum for Addisons and diabetes related issues.

Another Introduction

Postby julieb » Tue May 01, 2012 12:09 pm

Have been reading this forum for awhile and have found it extremely helpful. I have been Type 1 Diabetic for 47 years and was diagnosed with Addison's and Hypothyroidism last October (I am 52). I had high K+ levels for a couple of years but the nurse practitioner I saw would always pass it off as oftentimes the level would come down dramatically by the afternoon. But then by chance, she quit and I saw the actually endo and he started checking into things more thoroughly and found the diagnosis. I still produce some cortisol on my own when he did all the initial bloodwork. I now take in the morning HC 10 mg, Fluronef .1mg, Quinipril 10mg, Celexa 20mg, DHEA 50mg, Synthroid .05mg and then I take another HC 5mg @ lunchtime and then bedtime Prednisone 1mg, Lovestatin 20mg and Benadryl 12.5mg. My doctor recently put me back on the ACE inhibitor (Quinipril) since my blood pressure was a little high since on the Fluronef and to protect my kidneys but I feel more tired since I have been on it. Has anyone else experience this? It does seem to be one of the side effects from my reading. One more thing, I was already a insulin pump wearer prior to the Addison's diagnosis and still tweaking but sugars under pretty good control (last A1C - 6.9)
Thanks for hearing my story!
Julie
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Re: Another Introduction

Postby Wanda » Wed May 02, 2012 7:10 pm

Julie,

Your addisons is being treated in a very strange way! Is there a reason you have to take Prednisone at bedtime which would interrupt your sleep and take Benedryl that would help you sleep? The Prednisone would also interfer with the growth hormone that takes place at night. Taking Benedryl every night is dehydrating. It will dry out things like your ear canals also.

It would be helpful to take only 1/2 a florinef to see it if helps lower the BP instead of having to take an inhibitor. Has your renin been checked to see what the level is?

Taking 50mg DHEA will probably take you over the top of the range. Being above the range has been linked with cancer so it should be checked. I take 12.5mg daily. I could probably take 25mg and stay in range.

I take 25mg HC daily. 10mg about 5 or 6am (still in bed), 10mg at 10 or 11am (I often split this 5mg at 10 and 5mg at noon) and 5mg at 4pm.

I don't have diabetes and think it would be very hard to manage it and addisons!!

Hope you can talk to your doctor about trying something different. Going from noon until you take the prednisone is way too long.


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Re: Another Introduction

Postby julieb » Thu May 03, 2012 5:52 pm

I think my addrenal glands are still producing some cortisol and that is why I go until bedtime for the prednisone. I have tried other combinations but when I don't take predisone then I start the day behind and it takes me longer to feel good. I had a lot of trouble with sleeping before my diagnosis and I thought it was just because of going through menopause and that is why I take a small dose of benadryl. I probably will try not to take anything for sleep soon but for now it works. I have some issues with allergies anyway so it relieves some of those symptoms too. I appreciate everyone's input on what I have going on and take it all in consideration.
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Re: Another Introduction

Postby SueM » Fri May 04, 2012 2:47 am

julieb wrote:I think my addrenal glands are still producing some cortisol and that is why I go until bedtime for the prednisone. I have tried other combinations but when I don't take predisone then I start the day behind and it takes me longer to feel good. I had a lot of trouble with sleeping before my diagnosis and I thought it was just because of going through menopause and that is why I take a small dose of benadryl. I probably will try not to take anything for sleep soon but for now it works. I have some issues with allergies anyway so it relieves some of those symptoms too. I appreciate everyone's input on what I have going on and take it all in consideration.


Hi Julie,
I think the point Wanda was trying to make is that your addison's is being very badly managed by your medical team.
The idea of taking replacement steroids is to mimic the body's own pattern. What you are doing certainly does not. Steroids will keep you awake hence if taking them you do not take them at night.
I use both pred and HC and all doses are taken in the morning. If you don't feel good in the morning or it takes so long to get going then you need to look at your morning dosage :)
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Re: Another Introduction

Postby Wanda » Fri May 04, 2012 10:40 am

Julie,

Once you are taking a replacement dose of cortisol for some time, in your case since last Oct, your adrenals will stop producing cortisol. There is no need to produce it since you are supplementing. They will also eventually atrophy.

Many of us take an HC dose an hour or so before getting out of bed. That starts the day well. Some do take 2.5mg HC at bedtime if it aids their sleep, but best if you don't have to.

How do you feel in the late afternoon and evening?

Wanda
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Re: Another Introduction

Postby julieb » Mon May 07, 2012 11:22 am

Sorry it has taken me awhile to respond. I have been out of town. I feel good in late afternoons and evenings for the most part. I was taking a small 5mg dose of hydrocortisone late afternoon but I would frankly forget sometimes and it didn't really seem to affect how I felt so I just haven't been taking it. I have tried many combinations of medications but actually read about taking a small bedtime dose of predisone on this site and asked if I could try it. I have also tried taking small dose of Hydrocortison at bedtime and I really had trouble sleeping. Since, I have wrote on this site I have stopped taking the benadryl and sleep fine. I had been in the trial and error mode with all these medications but feel pretty good now. My thyroid and the Addison's was discovered at close to the same time. They first started treating the Addison's and then the thyroid.

I also wondered if anyone has had trouble with feeling sluggish when taking an Ace Inhibitor like quinipril? I was started back on it since my blood pressure and potassium are normal but I started feeling bad. I have been off it for a couple weeks now and started feeling good the day I stopped. I read that it can be one of the side effects.
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Re: Another Introduction

Postby NJ » Sun May 13, 2012 7:00 am

Please you should not be taking an ACE or angiotensin II inhibitor. They raise potassium and this is dangerous for an Addison's patient. It would be best to lower the fludrocortisone or take perhaps a beta blocker or calcium channel blocker for high BP. Please tell your doctor you would like to take another type BP medicine and also never take a diuretic type.

You should take steroids as close to the body's natural release of cortisol.

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