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    Old 04-26-2006, 06:18 PM   #1
    KFXrider88
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    ACTH question

    Hi, I will try to make this as short as possible! I have been through 2 ACTH tests and have a couple of questions. I have secondary hypogonadism (testosterone defficiency) I'm a 22 year old guy. I have had the pituitary MRIs done and nothing was found. I am on testosterone replacement but it has not fully helped me, I still feel rotten. I am on low dose thyroid medication ( thyroid pretty much normal, but have hashimotos) but I think that was just done to appease me because I kept asking about my thyroid thinking that was the problem before getting testosterone. My cortisol tests always come up low normal ( morning cortisol test). My doc must think there is a possible problem because he has sent me through 2 ACTH tests. I also have the majority of symptoms, including the low BP, at times which was low enough to have worried Emergency room docs ( I have a bad habbit of wrecking 4 wheelers) But here's my question, my testosterone defficieny is caused by a underactive pituitary or hypothalamus for no apparent reason that can be can be found, it's just not putting out sufficient LH. I'm wondering if I have a addrenal lack due to lack of pituitary stimulation. MY ACTH tests come back ok, so my addrenal glands must be working, but I am wondering if the ACTH test would show if my pituitary is working properly. maybe it's not putting out enough "stuff" to make the addrenal gland work, I don't see how this test can prove or disprove that. So can the ACTH test prove or disprove that the addrenal gland is being stimulated enough and not just that the gland itself is not in proper working order? Thanks for any info you can give me, sorry this was so long!

     
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    Old 04-27-2006, 05:54 PM   #2
    graphicalg
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    Re: ACTH question

    can i ask what your lowest BP reading has been and also the average

     
    Old 04-28-2006, 03:39 PM   #3
    KFXrider88
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    Re: ACTH question

    I forget what the numbers where, they have just said on multiple times that it's way to low. I really wouldn't know what a good number is compared to a bad number, I never did figure out how that works

     
    Old 05-01-2006, 04:55 AM   #4
    graphicalg
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    Re: ACTH question

    medically 90/60 is considered to be the start of th e'low' range, but generally its when your body reacts badly to any particular range so it coult be 97/58 for you as you low range start point. my body has gained an immunity over the years so i usually dont feel crappy till its lke around 60/40 but a good range is usually between say 95/65 - 120/80

     
    Old 05-01-2006, 01:52 PM   #5
    sippii
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    Wink Re: ACTH question

    Greetings,
    I first became ill 1998 but by 2000 my adrenals were beginning to show extremely low. I had difficulty getting anyone to test because they kept blowing me off as depression (the fatigue was so severe) I was falling asleep at the drop of a hat. My cortisol numbers were less than 1. The doctor put me on cortisol but I didn't think it was helping because my pituitary wasn't putting out the ACTH either. So I had both endocrine glands become deficient which is unusual I'm told.
    I finally convinced a doctor to prescribe ACTH injections that I gave myself at home. This stimulated the pituitary which instructed the adrenal to put out cortisol. It did bring my ACTH and Cortisol levels up somewhat, but it took a lot of ACTH to get minimal reaction from the adrenals. It worked for a couple of years when I could no longer find a doctor willing to prescribe the ACTH. See, acth is a natural compound that pharmaceutical companies can't patent, so doctor will push the Cortisol pills as I believe doctor's are really just pharmaceutical dispensing stations. It became impossible to get any doctor to take on my case to find out why both endocrine glands were shot.
    Long story short, I have an immune deficiency called hypogammaglobulemnia which is low IgG so I am always getting an infection. About six months ago I finally started receiving treatment for this with IV infusions of gamma globulin. My endocrine glands have now started to function again after two years on cortisol, which is almost a miracle in itself.
    The real shame is that it took dozens upon dozens of doctor appointments and seven years of wasted consultations to final get someone to help me.
    If you are low normal already on the cortef, you need to watch it. Also you must have two blood tests taken, one in the morning one in the afternoon.
    My son is also 22 and has the same problems, but since he is younger he is not quite as severe as I am. I also have central sleep apnea which is rare form of apnea where there are lesions on the brainstem that forget to tell me to breathe,so I stop breathing 1200 times a night.

    Have you had a sleep study done. The sleep stages you are able to gain could also be a factor in endocrine disorders. I never get out of stage two sleep therefore I am not able to restore what I use up during the day. It used to take me sleeping three days to build up enough cortisol to just walk outside.
    The main problem is that doctors today simply won't go the extra mile to look for the cause. They say they are symptom management and if you need to know why you have this disease, then you have to look elsewhere. They are all too eager to steriod you up with little responsibility. Believe me, you don't want to be tied to cortisol .It will take a good ten years off your life.
    Also a symptom of adrenal insuffiency is a tremendous heightened sense of smell(drove me mad) and hypoglycemic reactions at the drop of a hat.
    I will check back to see if you have more questions, but I'm tired already.
    Good luck
    Pipsywiggins
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    Old 05-02-2006, 02:15 PM   #6
    KFXrider88
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    Re: ACTH question

    Hey Pippsywiggins, I agree with you, docs just want to prescribe the meds and not look for what is really going on. I think there is a root cause to my problems but I have given up on finding a doc who will look for it. Yep, I have been through 2 sleep tests. i had mild apneia come back as a result, but the sleep doc said it was nowhere near bad enough to begin causing a endocrine problem, matter of fact the cpap machine did me no good at all so i quit using it after 4 months. Does the cortisol really take time off your life? I'm not on any cortisol replacement yet, but I am on testosterone replacement which is going to have some really nasty effects on me in the future, so If cortisol is really that bad, I dunno if I want to take it. but if it could make me feel normal again, i suppose i would

     
    Old 05-02-2006, 03:36 PM   #7
    WandaB
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    Re: ACTH question

    KFXrider88, Cortisol is not bad unless abused. Those of us taking the smallest possible replacement dose should not have bad side effects from it. We have no choice but to take it. Well a choice maybe, but I prefer to take it. I have lots of living to do yet!!

    Wanda

     
    Old 05-05-2006, 04:00 PM   #8
    sue1234
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    Re: ACTH question

    Wow. I have a very strong sense of smell. I always joke that I could be a drug dog! I didn't realize that was related to the adrenals. Did you read that somewhere, or is that your experience?

    Karen

     
    Old 05-28-2006, 11:30 AM   #9
    opalfire
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    Re: ACTH question

    "I am on testosterone replacement but it has not fully helped me, I still feel rotten. I am on low dose thyroid medication ( thyroid pretty much normal, but have hashimotos) but I think that was just done to appease me because I kept asking about my thyroid thinking that was the problem before getting testosterone."

    Forgive me for jumping in, but I think I would take a whack at controling your thyroid since nothing else appears to be working for you. Low dose thyroid replacement is worse than no replacement. Your pituitary thinks that you're producing enough T4 and doesn't kick in as much stimulus to your thyroid and still a low dose (usually 30 or 60 mg. of Armour thyroid?) so you end up feeling worse than before! I learned all I know through the thyroid board on this site. Here it is in a nutshell: Test your Free T4 and Free T3, if on the low side for both, start on Armour thyroid 90 mg. (Synthroid will probably NOT work well for you) Stay on that dose for at least six weeks and retest. If still below mid range on both, jump up to 100 mg daily. Wait six weeks, retest. Mid range is found by adding the lowest range number plus the highest range number, and divide by 2. Men usually feel their best at around mid range, a little higher or a little lower, but not by much. Women feel their best near the top of the range, not at mid point...but everyone is different. At this point you should be feeling much chipper. Notice I emphasized, feel their best. This means that how you feel is more important than the medical opinion of a doc that has never had these symptoms. Outdated information is the bane of most thyroid sufferers that are close to borderline problems. I didn't suggest that you have your TSH tested because you don't need to know what your pituitary gland is doing, only what your thyroid has for a functioning level. My doc tests my TSH and it's .08. He says it's Euthyroid, which means it's not functioning on it's own at all. This is good for me so I don't have those huge ups and downs. I take Armour thyroid 120 mg daily and feel so well that it's a sin, albeit that I may have slight adrenal stress which makes it difficult for me to wake up easily, dizziness from climbing stairs, etc. I also have post-traumatic stress (survived the Hungarian Revolution in 1956), which I have never really learned to control. However, what the heck! I feel great compared to before controlling my thyroid!!
    Best of luck!!
    Judy

     
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