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    Old 12-29-2006, 06:07 AM   #1
    chrisS81
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    Desperate words of a desperate man

    This isn't the most positive of posts, so for those that get easily depressed, you may want to stop here. It's just morning and I'm looking to vent, hoping maybe this will help me fall asleep somehow.

    I'm 25, and have been suffering multiplying issues for the last 2 years(adrenal insufficiency, hypothyroid, hypogonadism, and diabetes insipidus). I had everything to look forward to finding the girl of my dreams and finishing school. Then I ended up having less and less energy to the point when I do anything active, I feel destroyed for the next week. I've had high hopes up to a few days ago when I thought I was feeling fine, but then 20 minutes of cardio on the treadmill to try to work physical activity into my life again and all the progress I've made just blows away. For the last three days I've been nauseous but starving, exhausted but unable to sleep, and I can't keep taking nyquil or melatonin to try to sleep every night.

    It doesn't help that the only person in my life is as active as I used to be. Always wanting to dance, go to parties with her family.. just so alive. She's the only reason I keep trying, but it breaks my heart that she has to go through this because of me. I've been going on Addison's forums asking questions, finding inspiration, seeing how others deal with it for the last year and a half, and 99% of the results are some of the most depressing things I've ever heard.

    It wasn't until several days ago in my most recent attempt to work some kind of cardio into my life that the nausea, headaches, salt cravings, and persistant muscle soreness just from a little mobility is kind of giving me a wakeup call. 3 days later my legs are still sore, from very light jogging for 20 minutes! I used to squat 450 and bench 370, running 5 miles 3 times a week..that amazing feeling of my muscles tightening from weight training and the runners high gone and replaced with a drugged/fatigued headache..what's happening to me and where will this end?

    Another 'bonus', my career field was heating and air conditioning(now I wish I did something in computers instead, but I just always enjoyed the physicality of some jobs).. it's a definite physical job.. and if I can't run cardio for 20 minutes, how am I ever going to get a job in that full time? I need money pronto.. What am I going to do now? For a moment I thought about disability and if it was possible, but that just depressed the crap out of me so I stopped thinking about it. .. How the hell am I going to support a family? I guess I'm not asking anyone here this question, but myself in a way..

    I keep positive and keep telling my fiance everything will be fine, I'm going to get this under control.. but every day I keep losing my grip and that soothing security I offer her is becoming harder and harder to say. I don't want to lie to her, but I don't want to make her life worse with the worry I deal with everyday. I have this creeping feeling that everything I have earned and worked hard for in my life will be washed away and my future family will never exist which will lead to my future self not existing.

    I'm probably just losing it.. I usually can keep my cool, but it's when I go so long without a good night sleep or much to eat that I start to evaluate my situation more.

    I could have posted all my test results, asked some questions, and all that like I have been doing since the beginning, but I don't have it in me right now, I just needed to vent this morning. I apologize if this post doesn't seem very helpful or useful, but maybe it will be for me, if I can fall asleep after getting some things off my chest just for a few more hours, then I know this venting wasn't in vain.

     
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    Old 12-29-2006, 08:51 AM   #2
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    Re: Desperate words of a desperate man

    Were you actually diagnosed with adrenal insufficiency? Did you have the ACTH stimulation test?

     
    Old 12-29-2006, 09:39 AM   #3
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    Re: Desperate words of a desperate man

    Hi Chris
    I hear you. I have hypopituitarism, which has resulted in my thyroid, adrenal glands and growth hormone levels going south. I take replacement hormones for all of these conditions, plus I have type 1 diabetes. In the first throes of my illness, I, too, felt hopeless. Luckily, I have a great endocrinologist, who insisted that we could regain some sense of normalcy once all the hormones were balanced. It took about a year, but growth hormone was the thing that finally restored my life. My questions to you are these:
    Do you have a competent endocrinologist?
    Have you been tested for growth hormone deficiency (arginine stim test)?
    What dose of cortisol are you on (it sounds a bit like you are underreplaced)?
    There is light at the end of the tunnel, and I hope you are able to find it. Having the right doctor is everything, so if you don't have one now, go looking. Hang in there.

     
    Old 12-29-2006, 11:39 AM   #4
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by WandaB
    Were you actually diagnosed with adrenal insufficiency? Did you have the ACTH stimulation test?


    Yes I did. about 16 months ago, it started at 9 and bumped up to 15(from 11-25 on the 'average' chart). He just has me on 12.5mg right now.


    Quote:
    Originally Posted by gettin' better
    Hi Chris
    I hear you. I have hypopituitarism, which has resulted in my thyroid, adrenal glands and growth hormone levels going south. I take replacement hormones for all of these conditions, plus I have type 1 diabetes. In the first throes of my illness, I, too, felt hopeless. Luckily, I have a great endocrinologist, who insisted that we could regain some sense of normalcy once all the hormones were balanced. It took about a year, but growth hormone was the thing that finally restored my life. My questions to you are these:
    Do you have a competent endocrinologist?
    Have you been tested for growth hormone deficiency (arginine stim test)?
    What dose of cortisol are you on (it sounds a bit like you are underreplaced)?
    There is light at the end of the tunnel, and I hope you are able to find it. Having the right doctor is everything, so if you don't have one now, go looking. Hang in there.
    That's what I have, I'm hypopituitary as well(although my ACTH is fine, my adrenals are just not responding well), but I had no arginine stim test done. He looked at the IGF-1 Free result and said my IGF was fine(it was 56 out of 20-80).

    Not sure if he is competent or not, I have been making improvements, but mainly the improvements are from slowly bumping up the cortef. He tried to get me off of it awhile back but I just got sick and I got a throat infection that lasted 3 weeks then he realized I needed it, but he seems hesitant to bump it up. After reading about it I understand why.

    All I know is if I don't exercise or do anything physical, I feel almost decent, but when I do, the next day..no appetite, I vomit just trying to take a multivitamin from gagging, some salt craving, diarrhea.. horrible insomnia.. it's just a real humbling experience when I feel I'm going to get through this and then any excursion at all and I'm in for a ride.

    Interesting thing is, instead of taking a ridiculous 6 sprays a day of desmopressin for diabetes insipidus I'm down to 2-3 which is pretty normal, and this was only after bumping up the cortef to 10mg a few months ago.

    The thing is, everyone that seems to have a horrible time with adrenal insufficiency seems to be taking the upwards doses of 20-30mg a day, and since the adrenals only create 20mg a day it seems like overdoing it causes a lot of damage in the long run. Honest opinion(s), does it seem like I need more?

    I've yet to talk to someone who doesn't have a sad story just staying awake let alone having any decent exercise or sexual function that is taking that high of dose on the several boards I've frequented over the time. Just feels like I may be headed in the same direction..

    By the way thanks for letting me vent earlier, lol. i feel a little more stable now lol

    Last edited by chrisS81; 12-29-2006 at 11:42 AM.

     
    Old 12-29-2006, 12:31 PM   #5
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    Re: Desperate words of a desperate man

    Since you were diagnosed with adrenal insufficiency & are only taking 12.5mg, you are ""needlessly"" having symptoms. You should be on at least 20mg, taking 10 a.m., 5 noon & 5 about 5pm. You cannot get by on only 12.5 with your symptoms. It will help you all around to take at least the min dose of 20mg. I also wonder about your endo. You will need to be the driving force in your health care with adrenal problems. The docs have no clue!!!

    Are you taking the 12.5mg all at once?

    Your salt cravings means you need at least more Hydrocortisone or perhaps Florinef also. You get some of the benefits of Florinef from the Hydrocortisone. What are your sodium & potassium levels?

    Has your endo discussed how you should increase when you become ill or have trauma of some kind? The excercise you are attempting to do has no cortisol to cover it. No appetite, vomiting, diarrhea & insomnia are signs of not enough cortisol (Hydrocortisone). Many take 2.5mg just before going to bed to enable them to sleep better. Others take it when they wake in the middle of the night & can't get back to sleep.

    Most of us with addisons/adrenal insufficiency lack testosterone, so sexual function is lacking unless it is replaced.

    Don't let what you read about steriods mislead you.....we are REPLACING what we no longer make. We cannot exactly replace as a normal body does therefore we need a bit more than what they say a normal body produces. What you read is aimed at those who abuse & take steriods for reasons other than keeping them alive, which is our purpose.

    My opinion is you need more Hydrocortisone if there is no hope of your adrenals ever working.

     
    Old 12-29-2006, 12:51 PM   #6
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by WandaB
    Since you were diagnosed with adrenal insufficiency & are only taking 12.5mg, you are ""needlessly"" having symptoms. You should be on at least 20mg, taking 10 a.m., 5 noon & 5 about 5pm. You cannot get by on only 12.5 with your symptoms. It will help you all around to take at least the min dose of 20mg. I also wonder about your endo. You will need to be the driving force in your health care with adrenal problems. The docs have no clue!!!

    Are you taking the 12.5mg all at once?

    Your salt cravings means you need at least more Hydrocortisone or perhaps Florinef also. You get some of the benefits of Florinef from the Hydrocortisone. What are your sodium & potassium levels?

    Has your endo discussed how you should increase when you become ill or have trauma of some kind? The excercise you are attempting to do has no cortisol to cover it. No appetite, vomiting, diarrhea & insomnia are signs of not enough cortisol (Hydrocortisone). Many take 2.5mg just before going to bed to enable them to sleep better. Others take it when they wake in the middle of the night & can't get back to sleep.

    Most of us with addisons/adrenal insufficiency lack testosterone, so sexual function is lacking unless it is replaced.

    Don't let what you read about steriods mislead you.....we are REPLACING what we no longer make. We cannot exactly replace as a normal body does therefore we need a bit more than what they say a normal body produces. What you read is aimed at those who abuse & take steriods for reasons other than keeping them alive, which is our purpose.

    My opinion is you need more Hydrocortisone if there is no hope of your adrenals ever working.

    Thanks for the quick reply Wanda I really appreciate it. My endo hasn't really explained anything about it when I get ill or not. He's been getting me better slowly but he isn't much of a talker.

    Every time we've taken a test on my electrolytes they have been pretty normal (salt is around low normal, sometimes 1-3 points below). My endo comes in on tuesday so I'm going to call and mention this. I'm not sure addison's is up his alley, but then again I've yet to find a doctor that does specialize in it.

    So are you telling me these symptoms are probably unnecessary? Why is it everyone that are on these forums.. it's just impossible to find someone living a normal life or even close to one. I've tried to search and search.. I've yet to find someone with a physically demanding job that has addison's/adrenal insufficiency and they seem to struggle just to get some cardio done or mild weight training despite all these claims of "You can lead a relatively normal life," I see everywhere. I just don't want to feel disabled anymore..

    By the way I take 7.5mg in the morning and 5 in the afternoon. I might get desperate and try to up the dose myself to 15 or something and see what happens from there, or even 17.5.. how would my doctor know? And what would be the issue with tampering down if it wasn't necessary? I'll talk to him first though..

     
    Old 12-29-2006, 01:57 PM   #7
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    Re: Desperate words of a desperate man

    Get your doc to give you an absolute diagnosis of adrenal insufficiency if you don't have it already. You want that stated in your file or you could have problems later. With everything else you have going on it sure fits in. Has your pituitary been checked?

    You need to do more searching for other forums. There are several. I have an internet friend who runs marathons & does very well at it. She has also climbed mountains & goes on hard trails dirt bike riding. She takes about 2.5mg extra Hydrocortisone every hour or so of running to attempt to replace as a normal body would for the extra exertion. There are many others who can do this. The trick is to be on the young side & to be taking the proper replacements. There are so many more people you need to talk to. The more the better.

    We have to be smart enough to read the signs are body is giving us & take the extra cortisol our body can't give us. This is the only way to survive with adrenal problems. For me being chilled to the bone, internal/external shaking & not able to get warm is a sign I need at least 5mg extra. Not getting at least 5 hours of sleep kills me & if I can't rest I take exta. I can't even remember the last time these things have happened so it is not a regular thing. Oh, I fell down my stairs several months ago & ended up having to take a total of 50mg extra to pull out of the trauma it caused.

    I live a pretty normal life. Thankfully retired. Hardest part was getting used to the fact that I couldn't work, every minute, as hard as I once did. I am answering you while the wax on the hall & entry floor is drying.

    Tapering would need to be done by 2.5mg every 3 days or so. Don't know how you could do that when you have the symptoms you do.

     
    Old 12-29-2006, 02:56 PM   #8
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    Re: Desperate words of a desperate man

    I feel your pain.

    I use to workout daily. Weight, boxing, martial arts, running... I loved it. It was my life. I was always trying to find way to challenge my physical fitness. I lost a ton of weight back then. I had a 6 pack and everything. Now... I gained all the weight back... and I'm stuck with a keg, versus a 6 pack

    How did your fatigue and symptoms start? Mine occured after a series of stressful events. Even though I was working out, sleeping great, eating like a nutritionist, I was still getting more and more tired.

    I also wanted to see how your ACTH was done. Did you get the injection after they drew the blood for the first time, or was it just a straight blood draw? My levels too are barely above normal on the cortisol test. It was an 8 (between 5-25). It's funny, the levels of test that your doctor gave you was 11-25. Seems like there is no standard test that these guys are running.... scary!

    I'm having a urine test done. I'm still untreated for my adrenal problem. Every other test that I've had done so far has come back fine, except my saliva test (all low, or in the almost none range). This is the only thing that makes sense about how I feel.

    When I workout, I don't get sick, however I do break into cold sweats, I turn pale, and i get dark circle under my eyes. Anyone seen this? I'm also left even more fatigue the rest of the day.

    I'm also extrememly sore for the next few days too, when this never happened before.

    I'd like to talk with you more on this and see how things are going.

    Here is the thread I started when I first came here. It tells a little bit more about me.

    [url]http://www.healthboards.com/boards/showthread.php?t=444385[/url]
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    Last edited by AlwaysTired247; 12-29-2006 at 03:03 PM.

     
    Old 12-29-2006, 04:18 PM   #9
    chrisS81
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by WandaB
    Get your doc to give you an absolute diagnosis of adrenal insufficiency if you don't have it already. You want that stated in your file or you could have problems later. With everything else you have going on it sure fits in. Has your pituitary been checked?

    You need to do more searching for other forums. There are several. I have an internet friend who runs marathons & does very well at it. She has also climbed mountains & goes on hard trails dirt bike riding. She takes about 2.5mg extra Hydrocortisone every hour or so of running to attempt to replace as a normal body would for the extra exertion. There are many others who can do this. The trick is to be on the young side & to be taking the proper replacements. There are so many more people you need to talk to. The more the better.

    We have to be smart enough to read the signs are body is giving us & take the extra cortisol our body can't give us. This is the only way to survive with adrenal problems. For me being chilled to the bone, internal/external shaking & not able to get warm is a sign I need at least 5mg extra. Not getting at least 5 hours of sleep kills me & if I can't rest I take exta. I can't even remember the last time these things have happened so it is not a regular thing. Oh, I fell down my stairs several months ago & ended up having to take a total of 50mg extra to pull out of the trauma it caused.

    I live a pretty normal life. Thankfully retired. Hardest part was getting used to the fact that I couldn't work, every minute, as hard as I once did. I am answering you while the wax on the hall & entry floor is drying.

    Tapering would need to be done by 2.5mg every 3 days or so. Don't know how you could do that when you have the symptoms you do.

    Thanks for the positive outlook. As for your marathon friend on the internet or another board.. is her name Linda by chance?

    If you don't mind me asking, when did you get diagnosed, and how long have you been dealing with it? Those symptoms of chills and sleeping 4-5 hours sounds about right for me if I'm lucky. I seem to have all the symptoms you do.. you are describing things I haven't really thought about (the chilled feeling..today especially I've been having the heater on wrapped up tight in a blanket)

    Also, how do I get an absolute diagnosis of adrenal insufficiency? I took the ACTH stim test, he's been monitoring my cortisol, he told me I have adrenal insufficiency.. what else is there?

     
    Old 12-29-2006, 04:35 PM   #10
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by AlwaysTired247
    I feel your pain.

    I use to workout daily. Weight, boxing, martial arts, running... I loved it. It was my life. I was always trying to find way to challenge my physical fitness. I lost a ton of weight back then. I had a 6 pack and everything. Now... I gained all the weight back... and I'm stuck with a keg, versus a 6 pack

    How did your fatigue and symptoms start? Mine occured after a series of stressful events. Even though I was working out, sleeping great, eating like a nutritionist, I was still getting more and more tired.

    I also wanted to see how your ACTH was done. Did you get the injection after they drew the blood for the first time, or was it just a straight blood draw? My levels too are barely above normal on the cortisol test. It was an 8 (between 5-25). It's funny, the levels of test that your doctor gave you was 11-25. Seems like there is no standard test that these guys are running.... scary!

    I'm having a urine test done. I'm still untreated for my adrenal problem. Every other test that I've had done so far has come back fine, except my saliva test (all low, or in the almost none range). This is the only thing that makes sense about how I feel.

    When I workout, I don't get sick, however I do break into cold sweats, I turn pale, and i get dark circle under my eyes. Anyone seen this? I'm also left even more fatigue the rest of the day.

    I'm also extrememly sore for the next few days too, when this never happened before.

    I'd like to talk with you more on this and see how things are going.

    Here is the thread I started when I first came here. It tells a little bit more about me.

    [url]http://www.healthboards.com/boards/showthread.php?t=444385[/url]

    Hey how's it going, yeah I checked out the thread to see what was going on. Seems liek you can do some cardio though so thats really great. Have you had your appointment yet? What has the doctor said? By your results sounds you gotta think it's positive that you only have adrenal issues. My electrolytes have always been pretty normal with a little low sodium. Are you even on any cortef yet?

    About your vacation, I think I feel you on that.. stress makes things a lot worse.. My fiance is my stress relief, as no one makes me feel like she does..and I always seem to feel somewhat better when I'm around her(not enough to exercise though lol).. but she's on vacation at her families for the month and a half and I'm breaking down over here lol.. without her I'm roaming the internet looking for some kind of contact with people (I used to have friends but we grew apart when I had no energy to hang out with them anymore).

    I compare this best with a bird having it's wings clipped.. I'm lost without my health. It was the one thing I always said "welp, at least I got my health,".

    As for the dark circles under your eyes after exercising? Ditto. I can show you my drivers license picture from Oct 2005 and I was down to 170lbs(from 205lbs with abs lol) my eyes were dark like I got hit in both of them. Especially if I do any exercise.

    It also would happen when I was on a lower dose of cortef, and also when I wasn't taking any cortef they were dark all the time. I got sooo sick of people saying "Wow you look tired, you need some sleep,".. You just want to strangle them

    Last edited by chrisS81; 12-29-2006 at 04:42 PM.

     
    Old 12-29-2006, 06:32 PM   #11
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    Re: Desperate words of a desperate man

    Again, I agree with Wanda. I don't think you are getting enough cortisol. I was able to go down to 15 mg. of Cortef for awhile, but I soon found that I needed to bump up to 20, which is what I take now. (The endo had me on 60 mg when I was first diagnosed.)

    I am stumped at your IGF-1 results. My last one was 176 with a normal range of 92-190 (I am currently taking growth hormone, so those results are perfect). You really need an arginine stim test -- I would ask for it. If your pituitary gland is bad, your growth hormone level could easily be extremely low, and that could explain a lot of your problems.

    Go looking for a good doctor who has dealt with pituitary issues.

     
    Old 12-29-2006, 06:48 PM   #12
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    Re: Desperate words of a desperate man

    Quote:
    Originally Posted by gettin' better
    Again, I agree with Wanda. I don't think you are getting enough cortisol. I was able to go down to 15 mg. of Cortef for awhile, but I soon found that I needed to bump up to 20, which is what I take now. (The endo had me on 60 mg when I was first diagnosed.)

    I am stumped at your IGF-1 results. My last one was 176 with a normal range of 92-190 (I am currently taking growth hormone, so those results are perfect). You really need an arginine stim test -- I would ask for it. If your pituitary gland is bad, your growth hormone level could easily be extremely low, and that could explain a lot of your problems.

    Go looking for a good doctor who has dealt with pituitary issues.
    You talking about IGF-1 total or free? Isn't 'normal' range of 20-80?

    Wow, 60mg's.. amazing. How hard and how long did it take to go down? How do you feel now? sex drive, activity level and all that?

    Last edited by chrisS81; 12-29-2006 at 06:49 PM.

     
    Old 12-29-2006, 07:09 PM   #13
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    Re: Desperate words of a desperate man

    Thanks for the positive outlook. As for your marathon friend on the internet or another board.. is her name Linda by chance?

    If you don't mind me asking, when did you get diagnosed, and how long have you been dealing with it? Those symptoms of chills and sleeping 4-5 hours sounds about right for me if I'm lucky. I seem to have all the symptoms you do.. you are describing things I haven't really thought about (the chilled feeling..today especially I've been having the heater on wrapped up tight in a blanket)

    Also, how do I get an absolute diagnosis of adrenal insufficiency? I took the ACTH stim test, he's been monitoring my cortisol, he told me I have adrenal insufficiency.. what else is there?

    Chris,

    The gal I am talking about is not Linda.

    I was diagnosed in 1998 & took a low dose of prednisone for a year hoping my adrenals would wake up. No luck there. I did have antibodies so have NO clue why we went the low dose route. Was not easy either. Doctors!! I had been very ill for a month with what I believe was whooping cough, then given high dose prednisone a couple times for the cough that wouldn't go away. After that I got really sick & ended up in the ER 3 times. Had a young doc the 3rd time who did the ACTH test & gave me cortisol right away. The illness was just too much for my adrenals.

    Just make sure your doc has written "adrenal sufficiency" in your file & that you need cortisol treatment for life. Once you have started taking a replacement the cortisol checks are worthless. You go by your symptoms & how you feel. I have never had a cortisol check since the ACTH test. No reason to.

    You are in "danger" Chris as you are having crisis symptoms. Make a list of what is going on & get the doc to increase you to at least 20mg. You actually need a script for 30mg daily so you have extra in case you need to stress dose. Just "tell" the doc what you want.

    Does your prescription bottle tell you to only take 12.5mg daily? I am amazed at this dose unless he thinks you don't have a life time problem.

    Wanda

     
    Old 12-29-2006, 08:06 PM   #14
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    Re: Desperate words of a desperate man

    Thanks for the heads up, I did call him yesterday and he'll be in Tuesday the nurse said so I'll call again with my sypmtoms and everything I need to say. Basically this is what I'm going to tell her.

    Before exercise I was feeling semi-normal with some sexual function.
    I exercised 20 minutes jogging that night and the next morning the following

    symptoms:

    diarrhea & nausea

    minor chills

    bad cough (I have that too! When he took me completely off of cortef 4 months ago to see how if I needed it, I got sick and a throat infection, since then I've had this cough several times a day that almost makes me gag sometimes)

    Muscle soreness for the next 4 days(so far) after exercising.

    insomnia(got bad after I tried to exercise, before it was pretty decent.. which again points to a sign of low cortef I think).

    Sexual function disappeared completely since the morning I woke up after trying to exercise.

    -----------------

    My doctor also said he wants to try in 6 months to get me off of it again, but I don't know if he's really listening to how I'm responding. Maybe he got the wrong impression when I said I felt pretty okay as long as I didn't have any physical excursion. But with physical activity I go to hell.. I think he ignored that part though. I'll try to be more persistent about raising the dose.

    As for the name Linda, I just talked to another runner on another forum was why I thought it was her.. and as for the prednisone.. you were on a high dose of it but still had a crisis? A crisis because you went on a high dose?

    Last edited by chrisS81; 12-29-2006 at 08:10 PM.

     
    Old 12-29-2006, 08:31 PM   #15
    AlwaysTired247
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    Re: Desperate words of a desperate man

    That's great that you have that kind of connection with her. I too have that with my wife.

    Yeah, I feel you on the wanting to hit people that tell you, you look tired. It's like... it's not bad enough we don't have a constant reminder of it, now we have a mirror that talks... great!

    Nope. No doctor is even willing to give me a shot on cortef, even a low 10-15mg dosage. I understand that this is a steriod and a hormonal replacement, but what if these labs are off? I'm seeing a new doctor (PCP) that I just switched to. This guy is suppose to be awesome at getting people back on their feet, and is willing to try new things. I hope he does something for me.

    Keep me up to date as things go along.

    Take care!
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