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Has anyone lost 50lbs on Predisone for Adrenal Insufficiency?
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Has anyone lost 50lbs on Predisone for Adrenal Insufficiency?

Hello Everyone,

Has anyone every LOST weight on Predisone?  I was diagnoised with Adrenal Insufficiency, and Low blood pressure in 2007.  I started 10mg of Predisone, and then dosed down to 7mg.  After I had been on Predisone for about 3-4 months, I started noticing that I was loosing weight.  I dropped 50lbs.

My symptoms were different.  I had been on the Atkins High Protien diet, and exercising 4 times per week.  One day, I couldn't sleep, like insomnia.   Then, I started having fatigue, heart paplations, dizzy, lightheaded, and was wondering if I was having anxiety attacks.  Started having rapid weight gain, along with nausea and vomiting in the morning, when exercising and lifting something heavy.  Went through many test, and the am cortisols were low.  

Endocrinologist put me on 10 mg of Predisone, and the new Endocrinologist would like for me to taper off.  When I did that some symptoms returned.  When I got down to 3-4mgs, I started getting frequent thirst, frequent urination, dizzy, lightheaded and fatigued.  My Supervisor stopped by to ask me if everything is OK, because I looked sick.  I called the Endocrinologist, told him this, and he said go back up to 7-8mg.  That is why I am still on Predisone.
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657231_tn?1390151580
Not usually and not on such a high dose. Pred is not the usual replacement (the long action makes the term side effects detrimental to the body and the short term bite too) and HC is more like what the body makes.
5mg is more of a normal dose anyway...

Your symptoms were of an adrenal crisis - did your doctor give you education on what to do and an emergency injection etc?

Stress dosing is one thing, but to stay on a high dose all the time can be damaging.

Some of the symptoms are side effects of the pred - like insomnia, anxiety, heart palps etc..

Do you have other disorders that use pred and that is why you need a high dose?
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1662828_tn?1303304083
Hello Rumpled,

Thank you for the sainity check!  Yes, I had an episode where I fainted at the wheel of my car in a parking lot.  They put me up, on 10 mg. when they found that my cortisols were low.  Endo also checked me for a Pituitary Tumor, but it was negative.  

I have been having symptoms of adrenal failure since 2003, but not treated until 2007.  Doctors thought it was....a panic attack.   I am not a doctor, but I feel like, the adrenals went untreated for so long, that it threw off something in the HPA axis.  

When I started taking the Predisone, the nausea and vomiting in the morning went away, almost immediately.  Then, after about 3-4 months, I started rapidily loosing weight.  They called me, 'the incredible shrinking woman" at work.  
Some of my symptoms are in line with Adrenal Insufficiency and CFS, but some of them don't.  I just want to make sure, that my doctors don't miss checking me for a tumor in my adrenal gland, or something.  They keep wanting to call it "depression", but my family and I say noooooo.  This is a physical illness.  
What is suppose to happen, when you quit taking Predisone?  Your adrenals are suppose to work on their own, right?  When I stop taking Predisone, frequent thirst, frequent urination is the first symptome to return.  Then, I get fatigued, and heart palpations return.  I have trouble walking across the room, without getting them, so I have to sit down.  It feels like my adrenals have fallen, and they can't get up!  Or, they are missing a benign tumor somewhere...(I realize that is extreme, to think that the doctors missed a tumor, but I can't explain why the symptoms return, and neither can the doctors).
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Its not uncommon to miss something, happens all the time.

Unless your doctors have done imaging of your adrenal glands, CT or MRI, they will have no way of knowing whether or not you have a tumor there. I have a tumor on my adrenal gland, found incidentally while checking something else. It appears to be producing too MUCH cortisol, although not all the time, and not in excessive amounts. You could say, it's flying just below the radar. ha ha.

Have you had testing for anything other than cortisol? Have they measured aldosterone, norepinephrine? Have they checked sodium, potassium?
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657231_tn?1390151580
Your doctor put you on replacements - way high amounts of replacements - without doing a normal set of testing to determine if the adrenals were at fault.  Upbeat listed some of the tests but they are going to be different on replacements than off - but it would be imprudent to be off the replacements to test - usually a doctor does all the testing before. As well as a stim test to determine the state of the adrenals and the source of the issue.

If you have AI, you generally have to be on replacements forever. I would feel free to consult another doctor however about testing, as well a different replacement and adding to the mix things like florinef, salt and whatever you need to feel better. If you crave salt - make sure you get it. Heart palps are a signal that you need salt and fluids. It does not have to be a tumor - often it is Addison's disease and that is an auto-immune process. Again, the doc could run a blood test...
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1662828_tn?1303304083
Hello Rumpled,

Yes, it was an unfortunate situation about the Predisone.  I had been suffereing from nausea and vomiting in the morining (tested for tumor in pituitary, but was negative).  Shortly after checking, I lost my job, so they put me up on Predisone at 10mg., as a temporary fix.  When I got a new job, the new Endo, asked me to dose down off Predisone, but when I did, frequent thirst, frequent urination returned.  My symptoms of fatigue returned so bad, that my boss shoulder tapped me, and asked me if there was anything wrong.  Because I was afraid, I was going to loose my job, I went back up to 7mg.  6 months ago, I tried dosing down to 2 mg.  The same thing happened.  I went and had my cortisol checked and it was 2.7 at 11:00am. or slightly low, even though I was feeling dizzy and lightheaded again.
I am currently out of work, however I am still receiving interviews.  Even though I look good on paper, when I start back to work, I fear my employer will still see that "something is wrong with me", and make up an excuse to let me go again.
I am at a loss, at which way to turn.  On one hand, I am a dead ringer for CFS, and on the other hand, I still have symptoms of adrenal problems.  I am totally confused, as to which way to turn.
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657231_tn?1390151580
The way you sound to me, a total layman, you have some sort of hormonal issues - and the pred resolving it shows you need corticosteroids but you may also need mineralcorticosteroids too. That may help with the nausea, urination etc.

Fatigue is a huge issues with adrenal issues - both high and low cortisol have fatigue.

Is your BP low? If so, you may need a higher salt diet. How are your sodium and potassium readings?
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1662828_tn?1303304083
Hello Rumpled,

My doctor has all my lab reports, and I will check them and take a look.  They didn't put me on anything other than Predisone, or even recommend salt or raise the issue.
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657231_tn?1390151580
Yeah... I will send you some links.
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1662828_tn?1303304083
Hello Rumpled,

Thank you for the links.  I am well aware, that Predisone is bad for you.  However, while I am on unemployment, the Predisone is on the $4 dollar list at Wal-Mart.  I have not priced out Hydrocortisol, and I am hoping to become employed soon.  When I do become employed again, I will have insurance, and be able to investigate this whole adrenal issue further.  
My boyfriend just bought me a wrist blood pressure machine.  I have been tracking my blood pressure and pulse rate.  My blood pressure and pulse rate are behaving erratically.  He wanted me to get the data over to my GP, and see what she says.  This is nothing new, as I have had my heart checked before and all they found was some arrythima (sp?).  I feel like, my pulse is bouncing around, and that they adrenals need to be further investigated.  When I had insurance before, I do not feel that my last Endo did a good enough job in investigating trouble with the glands.  
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657231_tn?1390151580
Hydrocortisone is cheap too... thankfully...

There is a blood pressure tracker here - it might be useful to track it here. If your pulse is super high, and your adrenals are at fault, salt is the solution as the adrenals are just trying to hold on to salt. Try salty food to see if you feel better.

Most endos don't know much about adrenals. You have to look around - but a pituitary center may be most helpful.
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1662828_tn?1303304083
Hello Rumpled,

Good to hear from you.  I found my test results, and will repost.  I think I noticed, that the salt was almost high, but not enough to be treated.  My blood pressure and pulse are still bouncing up and down, erratically.  I have been tracking every 15 minutes, and will pass it on to GP.  With the cortisol historically low, I am not sure that the erratic bp/pulse is an issue to address.  I feel like...yes, I am going out on the ledge again...it might be adrenal tumor.  I almost feel silly for bringing it up.
We are having company today, so I am off to clean house.  I heard back from a prespective employer today, so I am hoping to get an offer letter, too.
It's good Friday, have a good one,
Karen
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657231_tn?1390151580
High sodium is not common with low cortisol... has the cortisol been tested at different times of the day? Has renin and aldosterone been tested? Metaphrines? How is your potassium? Have you been to a cardiologist for a work up?

Have a Happy Easter...
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1662828_tn?1303304083
Hello Rumpled,

Happy Easter, as well.  I have had a heart work up, including EKG, Echocardiogram, Heart stress test (on treadmill), 24 hr Holter monitor.  They told me, that I had PVCs, and to get my Magnisum checked.  So, I had evidence of an erratic/unstable heart beat, back in 2006.  I probably need to pull these records.
In 9/2010, I had a few things checked at 11:00-11:30am.  
Sodium:  140   135-146
Potassium:  4.8  3.5-5.3
Not much showed up on this test.

This past week, I have been monitoring my Blood Pressure/Heart Rate and finding that it is behaving erratic/unstable.  I am charting the BP, to see if there is any kind of correlation to the medicine that I take and the waves of fatigue that I experience through out the day.  
With the Savella, which is a 4:1 ratio of Norepinphrine to Serotonin (sp?), I can feel my heart rate is soaring through the roof.  
Adding the hormone Norepinphrine addressed a big issue with pain, however it cause a bigger issue with the Blood Pressure/pulse.
I am not a Doctor, but I say... fix the erratic Blood Pressure/pulse!  Sometimes, it gets so high, I get symptoms of a heart attack.  Kinda scarry, but the sypmtoms can be reduced by changing the dose of Savella.  It was a cheap test, but helped me discover and document the erratic Blood Pressure/heart rate.
How are you today?
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657231_tn?1390151580
So the halter showed something and they just wanted magnesium checked and it was not done?

What about renin and aldosterone? Although with normal sodium and potassium those are likely normal...

If it stays irregular, I would go back to the cardiologist - after the magnesium test. Have you tried taking magnesium to help?

I think I have the flu.
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