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Old 04-11-2008, 09:54 AM   #1
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Does anyone have secondary adrenal insufficiency?

My recent tests showed that my cortisol was a 1 and my ACTH was a 5. Does this mean I may have secondary and not primary? I feel so weak and tired most of the time, and my doctors told me I will never be normal; I will be a new normal. Does anyone have secondary, and is there a good chance that after a year I will be better? I have looked for books about this, but there are none.

Also, my husband and I are taking our 4 children to Universal Studios in a couple of weeks, and I don't know how I will handle this since I can't hardly do anything at home. I rented a scooter so that I will last longer, but I am worried what I will do if I get too weak or sick. What precautions do I take if I am secondary and not primary?

Nicole

 
Old 04-11-2008, 07:25 PM   #2
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Re: Does anyone have secondary adrenal insufficiency?

It's been a long long time since I've seen cortisol that low. Your ACTH is among the lowest i get to see. High indication of secondary adrenal insufficiency. Could you have had a head injury? Even a mild head bump can mess up the pituitary. Pituitary problems do not get better and the use of cortisol in secondaries is for life. I'm secondary adrenal and secondary hypothyroid. With numbers that low you have no business going anywhere until your cortisol is properly addressed. Your numbers indicate high risk of adrenal crisis which you don't need to happen on vacation. If you can't do stuff at home, your husband should want you to stay home. Maybe have someone go in your place. Those are the precautions you need to take at this time.

You need the acth stim test (12 hour fast). See my post about how to interpret this test. You do need to get proper thyroid testing which where there is low cortisol, thyroid is low too (TSH, Free T3, free T4, TPO and Tga thyroid antibodies). Also get prolactin, igf-1, DHEA-S, aldosterone and renin (fast salt and salty foods for 24 hours, test first week of your cycle), fasting insulin and glucose, LH, FSH and all sex hormones with SHBG.

If you have low potassium that is what happens with 99% of secondary AI. Where there is low potassium usually renin is low. Low renin is what 99% of secondaries have. If your sodium is 140 or less, I expect you to have salt wasting symptoms (hard to handle heat, excess sweating, salt craving), sometimes low thyroid can mask these symptoms. I also have a post about all this from a few posts ago.

Explain to your husband that hormones are the bodies gasoline. Thyroid, cortisol and sex hormones are very big for that. Your tank is near empty. Show this to your husband, he needs to understand.

Hang in there.

Last edited by Hormoneman; 04-11-2008 at 07:44 PM.

 
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Old 07-17-2008, 12:35 AM   #3
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Cool Re: Does anyone have secondary adrenal insufficiency?

yes i have secondary adrenal insufficiency just diagnosed at UPENN. the doc told me to take cortef 20mg and then decided to go to 30mg because i weigh 250lbs. anyone else have secondary, i'd like to hear about it too.

 
Old 07-17-2008, 05:22 PM   #4
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Re: Does anyone have secondary adrenal insufficiency?

Mistersleepy:

I have some degree of secondary AI. My dr has diagnosed me with "partial secondary AI" .

I "passed" the stim, but have decreased cortisol levels and impaired diurnal rhythm. I cannot tolerate thyroid meds I desperately need.

I have spent countless hours trying to find information on it, and haven't been able to find as much as I would like, but enough to understand what is going on.

I have tried to find info on what the average response to the stim test is in healthy subjects, and I think that mine (31.7) is below the average. But, certainly above the cutoff of 20. I just wonder over time, if my low ACTH will atrophy me adrenals and I will end up in pretty bad shape. That is why I decided to try treatment at this stage of disease.

However, I am having trouible with HC dosing, which I started fours weeks ago

What is your story?

Who is your Dr at Penn?

Last edited by sparkles916; 07-17-2008 at 05:22 PM.

 
Old 07-18-2008, 12:16 AM   #5
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Re: Does anyone have secondary adrenal insufficiency?

hi S916

i got sick in 2000 but didn't start HC untill 2007. been to tons of docs. got fed up w docs that don't know what they are doing so I whent to UPENN to see the endo. she said my adrenals are fine but my pituitary isn't signaling them. she told me to take 20mg HC. my last visit she told me to bump up to 30mg. i don't have my lab results right now.i don't fit the typical addisons profile. i'm 240lbs and don't have the exaustion but i do feel like complete crap every singal day and i haven't worked since 2000. I can't sleep until 6am . isn't HC suposed to wake you up. it makes me drowsy. I started at 5mg and every time i bump up 5mg of cortef i feel better but it never lasts. i'm afraid i'm going to bump my way up to complete addisons. i'm already taking 25mg right now. i'm wondering if my labs(am cortisol) are not accurate because my sleep wake schedule is screwed up.............!!! do you have any of these problems?

 
Old 07-18-2008, 05:18 PM   #6
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Re: Does anyone have secondary adrenal insufficiency?

Quote:
Originally Posted by mistersleepy View Post
hi S916

i got sick in 2000 but didn't start HC untill 2007. been to tons of docs. got fed up w docs that don't know what they are doing so I whent to UPENN to see the endo. she said my adrenals are fine but my pituitary isn't signaling them. she told me to take 20mg HC. my last visit she told me to bump up to 30mg. i don't have my lab results right now.i don't fit the typical addisons profile. i'm 240lbs and don't have the exaustion but i do feel like complete crap every singal day and i haven't worked since 2000. I can't sleep until 6am . isn't HC suposed to wake you up. it makes me drowsy. I started at 5mg and every time i bump up 5mg of cortef i feel better but it never lasts. i'm afraid i'm going to bump my way up to complete addisons. i'm already taking 25mg right now. i'm wondering if my labs(am cortisol) are not accurate because my sleep wake schedule is screwed up.............!!! do you have any of these problems?
I have been severely ill since around 2000 as well. I was sick for years leading up to it, since the early 1990's. I ordered my old medical records a few years ago and was clearly hypothyroid in 1995. I cannot work, and basically my life came to a complete stop four years ago.

The HC was WAY overstimulating for me, and had to back down from 20 +. I also had trouble multi dosing, it gave me troughs that precipitated very bad anxiety.

Do you take your HC all in the AM or take it throughout the day.

I bascially feel like I have a hangover everyday. I take my HC at 7AM and lay in bed still totally unable to move, but my heart pounding after I take the HC. I suspect I need more, but can't tolerate it as yet.

Who is your dr at Penn? I am up in PA now. Did you fail the stim test or are you in a partial AI situation as I am.

I am interested to know as I don't seem to find that many addisons persons have trouble with the HC. I wonder if secondary persons have more trouble, since there may still be adrenal function, tho no ACTH to prompt it.

My brother-in-laws mother has addisons, and she takes 25 mg every AM. She always takes her "happy pill" (ativan) at 4PM. I presume it is from the dip in cortisol later in the day.

I have heard tell that people who can't seems to have an adequate and stable HC dosing, switch to longer acting steroids. The one recommended on other adrenal boards is medrol.

I have not wanted to try it, since my partial AI may resolve at some point, but if you have complete AI, you have nothing to lose.

 
Old 07-25-2008, 01:47 PM   #7
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Wink Re: Does anyone have secondary adrenal insufficiency?

i have secondary adrenal insufficiency due to sheehan syndrome after i delivered my son. i bled out and my blood pressure went from 200/170 to 50/40 in a matter of seconds. i take prednisone, synthroid, metformin, and i haven't had a period in 19 years due to the pituitary not signalig my ovaries. i have crashed 4 times. i know how you all feel it is a pain in the but. hang in there all

 
Old 08-21-2008, 01:10 PM   #8
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Talking Re: Does anyone have secondary adrenal insufficiency?

I was diagnosed with secondary adrenal insufficiency 4.5 years ago after complaining of fatigue. The first endocrinologist tested me and prescribed 30 miligrams of cortef daily. The first two weeks I felt great. After one year on Cortef I developed cushinoid symptoms -- the begining of a buffalo hump and a basketball shape face. By then I was on my second endocrinologist who did not want to lower the dose. I lowered it myself and she sent me a registered letter "firing me" as a patient. The third endocrinologist lowered the dose even more than I had Yjank God). But by then I was always feeling ill. By the third year I was horriblely weak and ill. By the fourth year I had develped pulomonary embosists (two separate hospitalizations), severe diabetes (insulation prescribed which caused hair breakage - rare), loss of muscle mass in my arms and legs, nausea, rapid heart beat, osteoporosis and thin skin. I had many visits to the wound care surgeon to repair the damages to my skin after falls caused by the weakened legs. All attributed to the steroids.

I felt that my condition caused an impossible life condition so I stopped taking steroids. Three months later I was feeling better but chose to go to the Mayo Clinic in Minesota. After two weeks of testing they confirmed the diagnosis but said I could not look as good as I did if I had secondary adrenal failure. When I told the doctor I refused to take the steroids again he said that steroids were the standard treatment but that I should go on without them until I had symptoms (which I never had in the first place except for fatigue). HE BELIEVED THAT I WAS PRODUCING CORTISOL AND ACTH SOMEWHERE ELSE IN MY BODY RATHER THAN THE PITUTARY GLAND.

I have been steroid free for 10 months and all of the illness associated with the steroids have disappeared. What's more, all of my blood tests are now in the normal range including cortisol, ACTH and sugar. I finally felt good enough to travel and just returned from Alaska. BTW, the doctor at Mayo and the fourth endocronologist back home told me that sometimes people rebound from secondary adrenal insufficidency. I am proof of this.

THE BOTTOM LINE: BEWARE OF STEROIDS. TAKE MATTERS INTO YOUR ON HANDS. If you eventually get sicker - DOCTORS DO NOT KNOW EVERYTHING AND SOMETIMES WE ARE UNIQUE. If fatigue is your only symptom be especially aware of how your looks and general health change.)

NOTE: I AM NOT SAYING THAT YOU SHOULDN'T INITIALLY TAKE THE MEDICATION PRESCRIBED BY YOUR DOCTOR BUT MONITOR IT YOUSELF.

Last edited by mfleisch; 08-21-2008 at 01:17 PM.

 
Old 09-07-2008, 08:37 PM   #9
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Re: Does anyone have secondary adrenal insufficiency?

wow! I keep asking my doctors to lower my cortison so I could be free of this med, but the dogs say no. They say I'm a complicated case and not to change any of mymeds. This really bums me out becaus I'm getting fatter and feel like I'm prolonging the day when I can be normal. Did any of you have dysautonomia with this or symptoms it or pots? Thanks for all of you help because I'm feeling lost. It is good to know there are others like me.

 
Old 09-08-2008, 11:38 AM   #10
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rumpled HB User
Re: Does anyone have secondary adrenal insufficiency?

I know of others with POTS and cyclical Cushing's - so it is not an impossible combo but not a common one.
I still have a bit of it now with my BP dropping still...
Restrictions on this board mean I cannot direct you to other boards or people... crud...

 
Old 09-08-2008, 11:56 AM   #11
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Re: Does anyone have secondary adrenal insufficiency?

Thanks, for wanting to help me and letting me know there are other places that I can search for. Some days I feel a little normal, if I rested for days before. Other days, I wake up feeling very "drunk" with a bad handover at the same time. Go figure.

 
Old 09-09-2008, 01:11 PM   #12
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Re: Does anyone have secondary adrenal insufficiency?

Quote:
Originally Posted by nrseangie777 View Post
i have secondary adrenal insufficiency due to sheehan syndrome after i delivered my son. i bled out and my blood pressure went from 200/170 to 50/40 in a matter of seconds. i take prednisone, synthroid, metformin, and i haven't had a period in 19 years due to the pituitary not signalig my ovaries. i have crashed 4 times. i know how you all feel it is a pain in the but. hang in there all
I had similar blood tests but my message (see my posting from Mfleisch) indicate that is was worth the risk for me, if you are willing, to lower and eventually eliminate the steroids. The doctor at Mayo suggested that when and if if I started to get ill symtons from the pituitary malfunction to begin the steroids again. The only symptom I got was a temporary week or two of fatigue about 3 months later and then it disappeared. I AM NOT A DOCTOR SO THIS IS ONLY AN EXAMPLE OF MY CASE. THREE ENDOCRINOLOGISTS AGREED WITH THE TRIAL AND ONLY WAS WAS AFRAID OF LITIGATION.

 
Old 09-09-2008, 01:16 PM   #13
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Re: Does anyone have secondary adrenal insufficiency?

Quote:
Originally Posted by mistersleepy View Post
yes i have secondary adrenal insufficiency just diagnosed at UPENN. the doc told me to take cortef 20mg and then decided to go to 30mg because i weigh 250lbs. anyone else have secondary, i'd like to hear about it too.


I have secondary adrenal insufficiency and can't get off prednisone. Who is your doc at UPenn? Do you like?

 
Old 09-09-2008, 03:20 PM   #14
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Re: Does anyone have secondary adrenal insufficiency?

cathieod,

Why can't you get off of predisone? I am on cortef and they have weaned me down to 20 mg/day, but now no one wants to mess with my meds or go lower because they think I may have dysautonomia with secondary adrenal insufficiency.

 
Old 09-09-2008, 05:53 PM   #15
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Re: Does anyone have secondary adrenal insufficiency?

thanks for the info, if i go one day without my prednisone, my bp goes way down it has been as low as 40/30, time for a hospital trip. i have tried to go off of it, but my bp always goes down.

 
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