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    Old 07-14-2004, 10:37 AM   #1
    Jamescase5
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    What is wrong with me?



    I have adrenal Adrenal Fatigue and still feel super tired, I take only cortef, my doc dont want to use anything else. ginseng dont do anything at all, i used to get a kick from that years ago, but today, i can take 75 (or more) ginseng and dont feel anything at all. My acth test i was non responsive, my increase was only 1 point. DHEA was 0. I can actually feel pain in my back, I assume its my adreanal glands as when i drink coffee, it hurts bad. I get swellon lymph nodes in my neck swell up from any caffine and some drugs. when i take crap i should not do, like caffine but i still drink it since i feel like hell if i dont. I got down to 2 cups a day though. I dont know what to do. I started on my own organic adreanl gland cortex from a cow. I get diareea from that, but felt a little kick after about 1 hour. I dont know what to do. I dont want to do anything but sleep. I tried to even increase my dosage of cortef, but no improvment. I wonder if I could have lupus. Any suggestions would be helpful. JAMES

     
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    Old 07-14-2004, 06:13 PM   #2
    Jamescase5
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    Red face Re: What is wrong with me?



    Thank you chris. Its nice to see such a fast reply, or any at all for that matter. Yes, yes and yes. Well, I had been taking Armour thyroid b4 finding the adreanal test results. Something interesting, I found that taking T-3 alone 12-25 mg , then drinking coffee, my lymph nodes would not swell or certainally not as much as without the T-3. But after a few days I developed a pain in my right side, not sure what, but could be liver. So I stopped them. The armour thyroid made the pain even worse, so did T-4. Anyway, the doc and I got all the tests for thyroid, even the best test you can get, FREE -4 and FREE t-3. of course the older tests too, TSH and T-4 and the garbage test reverse t-3. All where pretty much right in there. Actually they were great. However, I as you know, show signs of Hypo, and yes, my temp is quite low. As low as 95.5 at times. And the temp would jump to 98.6 with the T-3. But, the pain in my side hurt bad. So I refused to take it. So then we got the adreanal test done. First of all we did a Siliva test. I am not sure of the exact numbers but here goes what I can remember.
    8am test um, 8 (normal range 15-25)
    11am test 7 (9-19)
    5pm test 5 (7-13)
    Midnight 1 (1-4)
    DHEA 1 (13-25)

    Doc told me to take all these herbs and crap and come back in 2 weeks. I did and didnt feel any better. I got a Endo and he gave me the ACTH test.

    Here is what I remember about the ACTH TEST

    I felt very tired as usual that morning. Barely got there.

    the baseline Cort test was normal I think
    Something like 22 Normal range was like (21-29)
    the baseline ACTH was normal high like um 34 range of like (8-39) (suggests addisons)
    During the injection I started to faint. The room suddenly got darker and I told the lady I was blacking out. She was startaled and never had that happen, so she slowed down the injection and it took about 10 mins to finish that one shot. I think the fact that I almost blacked out means my adreanal glands didnt responed. Sure enough they didnt.
    the response was not normal ( I was wrong what I told you before)

    It went up 5 points on the scale. The endo tried to tell me that the test was normal but I didnt buy it , and my first doc said I have adreanl fatigge. I studied the test results in med books and my test ideally I should have doubled or like you say, even more. But I found that anything less then 7 points response no matter where the baseline is, that is suggestive of adreanl insuffincey. My first doc agreed with me fully and put me on 10mg cortef, I did feel better after about 10 days, and we went up to 20 mg dose. 4 5mg a day. I feel better and not so. Still very tired during the daytime. I mean very. I have been ending up either taking sudahed (bad) or Ehederea( bad) or drinking coffee. ( bad) or sleeping the daylight hours away. Funny thing at around 12am, I seem to perk up and feel normal. I found too that if I sleep past around 8am, I get super super tired and sleep too noon or later. My doc warned me about all this. I did read the book Safe uses of cortisol. I also tried taking Ginseing, all types, I took 75 pills and didnt feel anything. Well, I better stop typing your going to kill me. JAMES

     
    Old 07-14-2004, 09:06 PM   #3
    Jamescase5
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    Post Re: What is wrong with me?

    Ok, Thank you so much for your help. I wanted to find others who suffer from the same or along the same lines of illness. To answer your question, I get to feel better very late at night usually after midnight or sometimes around 10pm or so. I have also experimented with drugs on my own. I have read alot online about this stuff. I have tired PREDNISONE, is that what you took? I dont have insurance right now so I have been self medicating a bit. I never however took the PREDNISONE very long at all. I would boost the dose when I felt pain in the back (suggestive of adreanal crisis) and the pain would go away in a few hours. I would stay on the normal dose of 5mg. daily. But never stayed on it, I would convert back to Corteff after a slight tapering off. I have tried taking higher doses, but never very long. I tired going with the 4 5MG doses of corteff, and then a morning dose of 5mg prrdnisone. But again, never really waited very long before I lost faith. I think it takes up to 2 weeks for a response to meds like these. I also been taking 2 125mg does of organic cow adreanl cortex for only about 4 days now. I got bad headaches from it, (DHEA headache I am sure!) but only on a single 250mg dose. So I divided it. Do you know how much cortsione might be in 250 mg of organic cow adreanl cortex? I am also taking the normal dose of corteff 20mg a day, divided dose. I also have chronic post nasal drip year round. That is why I have taken sudufed in the past and always found I felt normal/productive on that, and almost totally useless without it. I dont know if I am dreaming or what but...I have a strong notion that the other part of the adreanal gland is my really big prob, the ony that supposet to make epinifen. Since sudafed is very close chemically to that. Or even lupus. I also find my joints seen to ache all the time, my sisters all complain about that as well, but they are just suffering without any help. WEll, thats what is going on with me. So...tell me about your disease and what is going on with you please, I wanna you to share that with me if you will. JAMES

     
    Old 07-15-2004, 06:48 AM   #4
    Jamescase5
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    Re: What is wrong with me?

    Ok, I took presnidonse last night at midnight and went to sleep, and I woke up at 8am! I agree with you, and I will instead to take 30mg cortiff and make early doses higher, or even take at bedtime. And skip the pres. OR if I take the cow glandular I will stay on the 20mg and just wait.

    I want to keep on the cow stuff since it will contain aldosernone and dhea as well. And since its organic from new zeeland, I should be safe from mad cow. My doc dont want to mess around with aldosterone. Thanks again, and btw, my tsh, free t3 and free t4 are normal. And besides when I take them, I get a pain (liver?) in my side. But a standard liver test (blood only) shows nothing bad. sorry to hear about your accident, how bad was it? what happened when you where 2?

     
    Old 07-16-2004, 05:08 AM   #5
    Tanya2
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    Re: What is wrong with me?

    Dear James,

    I have yet to be diagnosed with adrenal insufficiency although I have many symptoms suggesting that is my problem. I am currently under investigation by and Endocrinologist. I am writing because prior to this being investigated I was investigated heavily for the possibility of having Lupus. I have done extensive research on the subject. I wandered if you have found any of the Lupus message boards? They are valuable sources of information. Are you aware of the criteria for Lupus? My tests for Lupus came back negative even though I have actually had the butterfly rash in the past. Recently I have began to research hypothyroidism as I have become aware that many of the symptoms for Lupus are also symptoms of hypothyroidism. What makes you think you have Lupus?
    As I am sure you are aware it is possible to have more than one autoimmune problem at a time as they tend to occur together. It is distinctly possible to have AI and Lupus. You should have an ANA done if you haven't already. If it comes back positive then you should ask for a full Lupus panel to check for specific antibodies related to Lupus.


    Tanya

    Last edited by Tanya2; 07-16-2004 at 05:12 AM.

     
    Old 07-16-2004, 04:10 PM   #6
    Jaid
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    Re: What is wrong with me?

    Hi...

    I just want to post what I know about Addison disease..... my mom had this and she never knew she had it...... she craved salt and would literally just eat it by handfuls! She was tired, weak , and she would even faint. She went to several doctors before one diagnosed her correctly. He told her it is a rare disease and that the only one he knew had it was President Kennedy.

    The way he diagnosed her was he told her he wanted to see pictures of her from when she was young up until present time when he saw her.... he could tell in an instant by the change in the color of skin and then he went from there...... I think he saved her life!

    She took medications ... cortef, synthroid, and florinef... she saw him on a regular basis and everything went fine ...... she was diagnosed in 85 .... my mom has passed since then..... 2 years ago but it was from nothing associated with this disease.......

    I hope some of this info helps...... Jaid..........

     
    Old 07-17-2004, 12:08 PM   #7
    Jamescase5
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    Re: What is wrong with me?

    Tanya, What is a ANA test?????????? Just wondering if you see this message or someone knows what it is, PLEASE POST an ANSWER! This has been the best help I ever had is this board.

     
    Old 07-17-2004, 12:18 PM   #8
    Jamescase5
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    Re: What is wrong with me?

    Tanya2, I hope you dont give up if the endo says your normal, mine did, and I fired him on the spot. My ACTH test was not normal, but he claimed it was. What a joke! My increase was 5 points and anything less then 7 is considered Addisons like disease. One good quick test is to take and look in a mirror in a low lit room, be sure to look directly into mirror, shine a flashlight right into your eye while still looking at the mirror, your pupil should contract and REMAIN contracted for like at LEAST 30 seconds, Mind gave up after just a few seconds. And they occilate. Meaning I have addisons basially. Try this TEST!!!

     
    Old 07-18-2004, 08:59 AM   #9
    Tanya2
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    Re: What is wrong with me?

    Sorry to have taken so long in getting back to you James. ANA is antinuclear antibodies. They are seen in 96% of patients with Lupus (SLE). Don't worry James I haven't given up. The endo said all this before she even ran one test. I will fire her if it warrants. I am already looking into my alternatives. I need someone who will run the tests not just tell me my ACTH is normal so so am I. I have not had a ACTH stim test yet or even a cortisol draw. It is nuts really. All these years of having symptoms of adrenal insufficiency and not one doctor recognized it. Just told me I had the flu all the time. My story is typical of those that go undiagnosed but I am an astute researcher so I don't plan on taking bad care anymore. I took it for a long time but now I have hyperpigmentation and that set me on the right track finally.

    James insist on a full Lupus panel not just an ANA. In 2-5% of people the ANA can be negative but usually there are other autoantibodies present specific to Lupus.

    I recommend you read "The Lupus Book" by Dr. Daniel Wallace it will tell you everything you need to know about Lupus. It will help you decide what to ask for in terms of testing from your Dr.

    Okay, don't read anything 10 yrs or older as it paints a horrible picture of lupus and it may scare the life out of you.

    You may realize by this reading that many of the symptoms of SLE can also be symptoms of adrenal insufficiency and hypothyroidiism together but it never hurts to research all possibilities.

    Tanya

    Last edited by Tanya2; 07-18-2004 at 09:02 AM.

     
    Old 07-18-2004, 09:06 AM   #10
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    Re: What is wrong with me?

    James, I am wondering why you have decided to take organic cow adrenal cortex. I know we do everything we can to regain our lost energy, but would be leery of this. Have you been tested for the need for Florinef? Have you tried Hydrocortisone? I do do not do well on Cortef. I am currently taking 5mg prednisone, 1mg about 5am, 2mg about 7am, 1mg about noon & 1mg at 5pm. Chris is correct with the dosing schedule he shared, I simply spread it a bit more. I will soon go back to 20mg Hydrocortisone. Prednisone seems best for me in the summer when I am more active. As Chris mentioned you may need a higher dose. It is important to get some cortisol early in the morning. Wishing you well, Wanda

     
    Old 07-18-2004, 09:28 AM   #11
    Jamescase5
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    Re: What is wrong with me?

    Thanks for the info, Wanda, did you try that self test I suggested? I hope you do, and would you tell me the results? Oh, and yes, I have been on predisone as well before, I like it since its long acting, but corteff works better for me.

    Never got a FLORINEF test done, dont even know how its done. My doc said its too lhard to use florinef and he dont use it, told me to eat alot of sea salt instead. He said alot of his patients who used it to all kinds of side effects. I have been told to take all sorts of alternative treatments from him, banging on back in the morning, using hot cold alternating on area near the glands, ginseing, licroice root, etc.

     
    Old 07-18-2004, 09:29 AM   #12
    Jamescase5
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    Re: What is wrong with me?

    I tried the cow glands because it has aldosterone in it, my doc refused to give it to me.

     
    Old 07-18-2004, 09:45 AM   #13
    Tanya2
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    Re: What is wrong with me?

    oh to add to my saga forgot to mention that my ACTH blood test was taken when I was on 5 mg of prednisone for joint pain! No wonder it was normal as this is nearly a full replacement doseage. She also said my pigmentation was only mild. Yah now kidding I had been on 5 mg prednisone for a whole year!!! I am weaning off the prednisone for my next round of tests. She said only need to go down to 2.5 the day before and then not take it the morning of the cortisol test. I plan on being off it longer to prevent a false positive. I know it is dangerous but I am willing to take the risk as I have become desperate at this point for some accurate answers. Not advocating this approach just telling my story.

     
    Old 07-18-2004, 09:31 PM   #14
    Jamescase5
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    Exclamation Re: What is wrong with me?

    Good for you Tanya, you know of all the herbs and stuff you can take as well right? Like ginseng? JAMES

    Good luck to you!

     
    Old 07-18-2004, 10:05 PM   #15
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    Re: What is wrong with me?

    James, Guess I'm having "brain fog"....what is the self test you mention? I believe renin & aldosterone levels are checked for the need for Florinef. Hopefully someone will correct this if I am wrong. I eat a fair amount of salt even though I take 1/2 tab of Florinef daily. Keep in mind large amounts of salt will harm the stomach lining. There should be little side effect from Florinef & actually none after the correct dose is found. Most start with 1/2 tab & if needed increase to full tablet or more. Some get ankle swelling for the first 2 weeks or so, but it does go away.

    I think you need to see a different doctor!!!! It really is up to us to get what we need to treat addisons as the doctors are not a big help. Take care, Wanda

     
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