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  • Adrenal Results, Help?

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    Old 06-15-2005, 05:29 PM   #1
    van7771
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    Adrenal Results, Help?

    I have been experiencing the following symptoms: headaches, lightheaded and dizzy, nausea at times, stomach issues, cant gain muscle and feel real week at times, cant concentrate, muscle aches,agitated, no motivation, chills, oral temp is around 94-95.0 F. My symptoms continue to get worse. I had half of my throid memoved several years ago, the other half has a nodule that isnt cancerous. My docor has done the following tests and cant figure out whats wrong with me. Could anybody let me know if they see anything abnormal.

    Normal
    Renin, Plasma Acitvity: .2 (.4-4.5)
    ACTH, Plasma 427 (5.0-60.0)
    11-Doexycortisol, Serum 6662 (20-130)
    11-Deoxycortisol, Serum LC/MS/MS 7074 (119 or less)
    ACTH Stimulation;
    Cortisol Baselin: 22.6 (4-22)
    30 minutes 28.1
    60 minutes 29.0
    Testosterone 257 (241-827)

    Alot of these tests look out of range to me, but not sure what to do.
    l am male and 27 years old, my testosterone for my age doesnt look right either.

    TSH 1.32 (.40-5.5)
    T4 Free 1.2 (.80-1.8)
    T-3 Free 317 (230-420)

    I also have a strange sensation in my throat around my thyroid that hasnt been removed.
    Any help would be very much appreciated.
    Thanks:

     
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    Old 06-22-2005, 09:55 PM   #2
    sadie-mae
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    Re: Adrenal Results, Help?

    Hi Van

    I'm sorry...somehow this message wasn't responded to.

    Your lab results appear to be suspicious for Cushing's disease. I have Cushing's and have had to learn alot about it over the last year. Trial by fire.

    Do an online search for Cushing's and quite a bit will come up. Read some about it and see if it sounds like you at all. There are many symptoms but everyone is very different in how they present. The stereotypical Cushie patient is a rarity but doctors are only shown pictures of very advanced patients and most of us don't look like that. Weight gain can be a major issue but not everyone has it. This may be why your doc isn't thinking of it or it could be that he thinks it is "too rare" It isn't rare anymore when you are the one with the disease.

    The clues to this diagnosis are in your very (overly) healthy ACTH stimulation test, your off the chart ACTH levels (which actually suggest something called ectopic Cushing's-a tumor outside of the pituitary or the adrenal glands that is noncancerous in most cases but makes ACTH which stimulates overproduction of cortisol and leads to your symptoms).

    Your testosterone levels are very low for a young man your age. My husband actually has pituitary failure and is on replacement. We had to learn about that too!! (Have I mentioned this past year sucked?) Anyway...cortisol can suppress testosterone levels by suppressing LH/FSH from your pituitary via feedback systems. It needs attention and may help with some of your symptoms while you figure the rest of it out.

    Ironically enough, your thyroid numbers look relatively okay compared to the other stuff. Any idea why your doc measured renin but not aldosterone? My guess is your aldosterone levels are low (also occurs with Cushing's) and will definitely make you dizzy.

    The other measures are of precursors of cortisol and they are sky high....just further evidence of Cushing's in your case, I think.

    You need to find a doctor who really knows about Cushing's disease. There are several major pituitary centers around the country, depending on where you are. In many cases, you will have to travel out of state to find people who really know how to diagnose and treat the disease properly...it truly is rare and hard to find someone in the know.

    Read and learn as much as you can. Your best chance of an efficient treatment is by educating yourself and advocating on your own behalf. Your lab results are significantly abnormal and the right doctor will get you on the path to health soon if you can find them.

    Please keep us posted and let me know if I can help by answering any questions.

    Sadie

     
    Old 07-01-2005, 08:37 PM   #3
    van7771
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    Re: Adrenal Results, Help?

    Thanks for the reply, you say you have Cushings! Could you tell me what your symptoms were and what tests were done to find the problem, also how do you fix the problem. Are you taking any medications to fix the problem. I live in the WEST any good doctors out here? I have had a MRI of my pituitary and the docotrs say its okay. I have asked that an MRI be done on my adrenal glands but my doctor says its not necessary at this point. My response was you try living like this and then tell me its not necessary. Do what you have to do to fix me is what l say. Anyway l have alot of questions and will look up information on Cushings. I am on my 3rd Endo, they just dont get it.

    Thanks:

    VAN

     
    Old 07-03-2005, 09:22 AM   #4
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    Re: Adrenal Results, Help?

    Possibly the best Cushing's doctor is at OHSU (oregon health sciences). Where in the west are you?

    I also had Cushing's. The most basic testing is a 24 Urinary Free cortisol, followed by a dex/crh test and midnight cortisol sampling. Those are good for a baseline to see how high you are secreting. An ACTH is also good.

    Whatever you do, see an endo who specializes in pituitary disorders. Most endos focus their practice on either diabetes or thyroid issues and while that's all good it isn't helpful with Cushing's.

    There are also excellent endos in LA. Let me know where you're located and I can direct you to a few. One thing I realized during my fight with Cushing's is that you have to be willing to travel a number of hours to see a good endo.

     
    Old 07-04-2005, 08:22 PM   #5
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    Re: Adrenal Results, Help?

    Cushie:

    Thanks for your reply, l am out of UTAH. That probably doesnt help my situation, but if you have any good doctors let me know. Could you tell me a little about your situation like what your symptoms were, how long before they found the problem, how they found the problem and what your doing to correct cushings. Also are you ever normal again with Cushings?

    Thanks:

    VAN

     
    Old 07-05-2005, 08:23 AM   #6
    Cushie
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    Re: Adrenal Results, Help?

    I don't know any good endos in Utah. Oregon isn't too far, I would highly suggest seeing Dr. William Ludlam at OHSU. You can even call and talk with him - he'll give you some good ideas. 503-494-9000. He is a true Cushing's expert.

    I knew I had Cushing's for three years before I was dxed. I went to a lot of endos, none who were Cushing's experts, which is why I try and stress that you really, really need to see someone who has their focus on Cushing's. I had almost all the classic signs except that I didn't have big time straie and according to all the doctors I wasn't heavy enough. At 5'1" and 250 pounds, I felt plenty heavy.

    My situiation was that I was diagnosed in July of 2001, had pituitary surgery in August of 01. That failed due to a weird form of Cushing's (pituitary hyperplasia). Proceeded in Feb of 02 to have a BLA (bilateral adrenalectomy, meaning both adrenals were removed). By August of 02 I had lost almost all signs of Cushing's - the weight (about 130 pounds), the hump, the bruising, the frequent infections, etc. The only thing I'm left with is muscle weakness, which is getting better. I had all my surgeries and diagnosing done at OHSU. I also currently see Dr. Ludlam.

     
    Old 07-05-2005, 12:13 PM   #7
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    Re: Adrenal Results, Help?

    Cushie,

    Do you remembe what your 24 hour urine alaysis results were?

    Thanks

     
    Old 07-05-2005, 04:14 PM   #8
    Cushie
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    Re: Adrenal Results, Help?

    I sure do - they were actually low. My very astute endo decided to do further testing, because he thought it was either Cushing's or pseudo Cushing's. My result was 77.

     
    Old 07-05-2005, 08:41 PM   #9
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    Re: Adrenal Results, Help?

    Cushie:

    Thanks for your responce:
    Do you have your lab results for the tests l have listed above, l would like to compare. Would you mind listing all your symptoms for me.
    Aslo if your Adrenal Glands have been removed you would then have to take Cortef,florinef and other drugs l assume?

    Any tests l should ask my doctor other than the ones that have already been done.

    Thanks:

    VAN

    Last edited by van7771; 07-05-2005 at 08:42 PM.

     
    Old 07-06-2005, 07:44 AM   #10
    Cushie
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    Re: Adrenal Results, Help?

    Van, I'll comment on what tests I've had done.

    Renin, Plasma Acitvity: .2 (.4-4.5) Had this done post-BLA and mine is way high.
    ACTH, Plasma 427 (5.0-60.0) This is a VERY high result.
    11-Doexycortisol, Serum 6662 (20-130) Never had this one, looks like your doctor was looking for congenital adrenal hyperplasia, probably late onset
    11-Deoxycortisol, Serum LC/MS/MS 7074 (119 or less)
    ACTH Stimulation;
    Cortisol Baselin: 22.6 (4-22) Just seeing how high you can stimulate cortisol, I'll do some checking and get back with you.
    30 minutes 28.1
    60 minutes 29.0
    Testosterone 257 (241-827) That is pretty low for a guy, which I think you are. Most men are at the upper range. This can make you feel very tired. You might ask for a cream.

    Tests to ask for: dex/crh, midnight sampling, 24 HR UFC.

     
    Old 07-06-2005, 07:45 AM   #11
    Cushie
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    Re: Adrenal Results, Help?

    Van, one more thought but have you taken any form of steroids in the last year or so? Think about inhalers (Flovent is a big one), injections, lotions, etc.

     
    Old 07-06-2005, 05:48 PM   #12
    van7771
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    Re: Adrenal Results, Help?

    Cushie:

    I havent taken anything, l hate to even take asprin l dont like taking anything if l dont have to. Ya would you get back to me on your results and symptoms.

    Thanks

    Last edited by van7771; 07-06-2005 at 05:48 PM.

     
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