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  • taking cortef, and scheduled for ACTH test

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    Old 04-20-2006, 04:07 AM   #1
    Sage48
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    taking cortef, and scheduled for ACTH test

    Hello everyone,

    I have a question. I was diagnosed with adrenal insuffiency last year, and have been on 20 mg. of cortef a day, taken in the morning.
    My endro. Dr. is sending me for another ACTH test in May. I wonder how that can be accurate, if I am taking the cortef. Will the results be normal because of the replacement? Do I skip my medication the morning I have to go for the test?

    Any replies would be appreciated...
    Thanks,

    Sage

     
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    Old 04-20-2006, 04:16 AM   #2
    Sage48
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    Re: taking cortef, and scheduled for ACTH test

    WOW, I am in a fog.....just read some other posts, and low and behold, here is a post from just a little while ago, sounded just like my post, duh.....it was me......I don't remember posting my question about the cortef and ACTH test previously....

    Sorry.....but you can now see why I am concerned.....

     
    Old 04-20-2006, 04:31 AM   #3
    graphicalg
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    Re: taking cortef, and scheduled for ACTH test

    I am surprised that you are on cortisol (cortef) before all tests that i can only presume are still to identify and diagnos fully are being done, i would speak to your Doctor or Endo and see as the cortef builds up in your body, as it is a replacement drug, and see if you sound stop it for a few days before the test. This is a medication you should always inform any medical staff of especially before tests or surgery.

     
    Old 04-20-2006, 04:34 AM   #4
    graphicalg
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    Re: taking cortef, and scheduled for ACTH test

    Actually hi again, he may/she may have on on the cortef to push your cortisol levels high to seeif ACTH levels drop and if so that is a clear pituator disease indicator but check anyway i am guessing it will be the latter reason.

     
    Old 04-20-2006, 05:04 AM   #5
    Sage48
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    Re: taking cortef, and scheduled for ACTH test

    Thanks for your reply.

    I have been on Cortef 20 mg. for almost 7 months. I had an ACTH test last Sept. and my endro. Dr. said I had mild adrenal insuffiencie. I also had several other tests around that time. I had been having a lot of physical problems previously....and once started on the Cortef...they really improved.
    The Dr. said that I should have the test to see where my adrenal levels are now...but negelected to tell me if I should take my med. the day of the test. I know that you can't just stop taking Cortef...that would be a very bad thing, no thanks, don't want those problems again. I am going to speak with the lab. where I will have the test and see what they suggest, I figure that they should know...hopefully...what is needed for a correct test.
    The second part of your reply was interesting, maybe that is why my Dr. wants me to have the test again.

     
    Old 04-20-2006, 09:15 AM   #6
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    Re: taking cortef, and scheduled for ACTH test

    Sage,

    Since you are taking 20mg Cortef your adrenals will not function & eventually become atrophied. What is the reason the endo is doing the ACTH test?

    How do you feel in the morning? Taking all 20mg at once in the morning leaves you with no cortisol for way "too many" hours. I take a total of 20mg hydrocortisone daily. 5 mg about 6am, 5mg about 8am, 5mg at noon & 5mg at 5pm. The only time I take more at a time is when I have to stress dose for illness. Every one of us is different, but Cortef is not a long lasting steriod so is out of your system in a few hours. Your body is hit with allot & then has nothing.

    Wanda

     
    Old 04-20-2006, 10:44 AM   #7
    Sage48
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    Re: taking cortef, and scheduled for ACTH test

    Thank you for replying Wanda,

    I am taking the 20 mg. of cortef all at once in the morning. My endro. Dr. said that I have mild adrenal insuffiency. We believe that the insuffiency occured because I had been on prednisone for a few years, due to Fibromyalgia....weaned off properly 5 years ago, and then I had many steroid injections for my back and neck - had fallen 3 1/2 years ago, and herniated a lot of stuff, all of the "adrenal problems began shortley after ACDF surgery, was sooooo sick in the hospital...but nobody figured it out to be from adrenal insuffiency... ....Since I have been eliminating sugar from my diet, the hypoglycemia has really been better (actually went to 28 on test...and I was only a little tired) My heart was being affected prior to diagnosis, but that is now fine also. tachy, palps, chest pain...and there was nothing wrong with my heart....just the shortage from the adrenal glands..... supposedly
    I had questioned my Dr. about talking the medication only in the morning, but that is the way he wants me to do it.....I do get a little tired in the late afternoon...and if I am not feeling well for a valid reason, he told me to increase the cortef to 40 mg. a day for a few days, and to take it all at once in the morning.
    Because I have been on the medication for several months...I asked the Dr. if the adrenals may have recovered - He said to have the ACTH test done before our next visit....and he'll see ........

    Now I am totally confused.....does this sound strange???? But, one good thing, I am feeling soooooooo much better.....

    Thanks for your reply..

    Sage

     
    Old 04-20-2006, 10:58 AM   #8
    graphicalg
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    Re: taking cortef, and scheduled for ACTH test

    HiSage, great name by the way,

    Wanda is right. if you only take 20mg but its in one hit and i guess pretty much when you wake up then WOW that leavesyour body wanting. even if you are only mildy as ur endo says that still has to deal with this influx in the front said of the day, but when that backside comes you will be lagging, i know i said that the body builds it up,but i didnt think of the lag that your has each day. I amnot surprised you feel like you get more tired later in the day.

    I dont spread out my steroid like Wanda, i am on 15mg morning then 10mg evening, right now, i have tried the break up of it throughout the day and well i wont say but it wasnt fun for me personally. but everyones different.
    I do have a feeling know that your endo is wantign to take the repeat test with you on the meds so as to see what the diffrence range will be with a higher cortisol level this time round.

    Keep us posted.
    and always hit back with any Questions
    Thanks

     
    Old 04-20-2006, 11:15 AM   #9
    WandaB
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    Re: taking cortef, and scheduled for ACTH test

    Sage,

    We must be "very" careful listening to doctors advice. Especially about addisons. They can do us more harm than good at times. The more forums you can find to discuss things with others is the best thing you can do for yourself. Experience is so much better than what a doc has read in a book & forgotten most of what was read. On a 20mg replacement your adrenals will be doing nothing. Therefore you should either try tapering very slowly (taking about a year) to nothing or treat yourself as if you have adrenal insuffiency forever & take your replacement in a more usual manner. There are MANY MANY people with adrenal insuffiency from taking steriods for asthma & etc. as you have. If you have to increase it should be for only 3 days unless you are deathly ill & then right back to normal dose.

    I have no clue what the doc thinks the ACTH test will tell him while you are taking cortef. It would make more sense if you were taking Dex or prednisone. Hopefully others will answer who know more than I.

    Your adrenals cannot recover while you are on a replacement dose of cortef. I guess he thinks since you take it all at once the adrenals will kick in later in the day??????? I don't think so.

    Wanda

     
    Old 05-16-2006, 01:41 PM   #10
    Sage48
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    Re: taking cortef, and scheduled for ACTH test

    Thanks to all who replyed to my message. I have no idea what my endo. wanted with me taking 20 mg. in the morning. I just got home from my visit with him. He says that my level is up to 31....which is a big improvement. He said that my glands are begining to function again...???? He said that they are recovering...
    He also said that in 4 months he may start weaning me from the cortef, if all goes well in the meantime. I'll have another ACTH test before I go see him.
    Geez, I am confused, if the cortef builds up in your body...that would explain the increase on my ACTH test...maybe??? As far as once a day dose, maybe he did expect the adrenal glands to kick in during the later part of the day??? haven't go a clue on that one.
    All I know is that I am so much better....heart, hypoglycemia and everything else, I am really getting back to being ME......what ever that is!!!
    My endo. is a great Dr., head of the endo. department at a large hospital....he has helped me more than anyone else....and I was sooooo sick...thought I was really on my way out of this world. (my family dr. and caridologist were way off the mark, they kept doing tests, with no results, guess they didn't do a sugar test either...nothing they did helped me...& one visit to my endo. (actually my husband's endo.) and he had me on the way back...it took a couple of months, but wow, what a difference.)
    I thank you all for your replies, concern and advice.....I am confused about some of it, but I do ask my endo. some of the questions....it's nice to have backup from you guys!!

    Sage

     
    Old 05-17-2006, 06:04 AM   #11
    graphicalg
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    Re: taking cortef, and scheduled for ACTH test

    hey Sage hope all goes well, Keep us posted and evryone is here for ya

     
    Old 05-17-2006, 12:42 PM   #12
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    Re: taking cortef, and scheduled for ACTH test

    I will keep you all informed as to my progress through this maze I've found myself in!! I can't tell you how much it has helped talking with everyone and getting advice, I also think experience rather than book knowledge is the best teacher. I do not want to slide back into all of the problems that I was having, it is scary even to think about that. I would, and will, gladly take a replacement dose of cortef for the rest of my life...if it allows me to live a normal life.....being sick is not fun....
    I have been so good about giving up "sugar" products for over a year now. It has made such a difference in the hypoglycemia, which was very severe, 28 is kind of low on the test for that....and I was only a little tired. My endo. is still concerned about that, he mentioned it again yesterday. But, I am not eating sugar.....my husband has diabetes type II, so I have been kind of following his diet, and it is working. Unfortunately, all of the nice desserts and sodas that are out there for diabetics "hate" me....the sugar substitues are not good things, make me very sick...so I even stay away from the goodies made for diabetics. Let me clue you, this is serious, because I was a sugaraholic of major proportions - and I gave up sugar entirely. But feeling good is sooooooo much better.
    For the moment, I will continue taking the Cortef 20 mg. in the morning, a little tiredness in the afternoon I can deal with.......(still have no clue why he only wants me to take it once a day, in the morning)
    In four months, I will have another ACHT test, and then see where I stand. I will try to taper, per dr.s orders...and if I begin to have problems, well I just go back on the cortef.....I will not close the door on my options.

    But it would be nice to have my adrenals and pit. function normally!!!!!! May be a dream, but I'm going to try!!!

    Thanks again for all of your thoughts and the information...

    Sage

    Last edited by Sage48; 05-17-2006 at 12:44 PM.

     
    Old 05-23-2006, 08:20 AM   #13
    graphicalg
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    Re: taking cortef, and scheduled for ACTH test

    sage, i understand that you want to just follow Docs orders right now, but for the 20mg's how would you feel breakign your order a lil and at least going for 10mg and then even just the other 10 sort of mid afternoon early evening, I hate the thought of you having that droopy fatigue that goes on when things get low at the end of the day. You say you dont knoiw why Doc wants the 20mg all in one go, he like a lot of Endos just htink that it is fineand a large dose in the day is fine in one go for the day, and i am all for keeping to doctors orders, heck i have seen enough doctors and have enough doctors right now to know what orders to follow bu tthere are some that the orders are bendable. Basically in some cases doctors the , but the patient sometimes knows best. only you can truelly know what ur feeling at any giving time. Its like when you get ill (even a bad cold) you have to know at what point to take that crisis level cortef boosetr dose, you certainly cant wait till the doctor tells you too take it. and well its kindof the same principle for the day to day doeages.

    Gavin

     
    Old 05-28-2006, 06:08 AM   #14
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    Re: taking cortef, and scheduled for ACTH test

    Dear everyone,

    Thank you so much for all of your help and advice. I have been very fortunate during the last several months in not being sick....have not had to take the emergency dose of cortef....I did forget to take my morning cortef the other day, for the first time, remembered it about 1:30 in the afternoon....was not feeling well, but I took it then.... I wasn't feeling well cause my system was being deprived of it's meds.....not a nice feeling. It took me two days to feel better.. Other than that, I have been lucky.

    I am a bit afraid to divide the dose up on my own. I feel pretty good, actually about 100% better than a year ago. I don't want to rock the boat.

    I have a question though. I am on oxycodone 10/325 for a back problem. The Dr. increased it to 10/650 this month....but I got a bad headache and my stomach was not good. I noticed on the meds pharmacy directions that anyone with addison's has to be careful with this med. My dr. reduced the med back to the previous 10/325 level, and I am feeling better. The pharmacisit said it sounded like overdose symptoms. I am feeling better now, but I am not even taking the full dose of the oxycodone, I've been breaking the pills in half.... just in case they are affecting the addisions'''
    I can live with a bit of extra pain, but the other symptoms were not nice.

    My question is, how does the oxycodone/apap affect the addisons? Anyone have an idea.

    I thank you all for your replys...advice....concern. This board has probably saved my sanity in the past several months, reading and hearing your stories has made me realize that we are all in the same boat, in many ways. Thank you soooooooo much.

    Sage

     
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