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  • Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Primary?

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    Old 04-23-2008, 07:37 PM   #16
    TheAntiEndo
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    MG -

    I found a few similar pages showing the pathways of steroid "cascade", as well as a lot of research about how to find enzyme problems by looking at the "precursor-to-product ratios".

    I'm sure this is an over simplification, (and I'm not sure if it really even works this way), but I look at each step in the cascade like the old "flow rate" problems they used to make us do in school. Each steroid chemical is a seperate bucket, and it has inputs (enzymes that produce the chemical) and outputs (enzymes that turn the chemical into a different steroid), each with their own flow rate (level of enzyme conversion). Theoretically speaking, if a bucket is low it doesn't necessarily mean that it isn't filling up fast enough, it could also mean that it's emptying out too fast. I think some enzyme activity is constant, and some is mediated by Pituitary hormones, (ACTH / FSH / LH / etc).

    Since Pregnenolone is the "mother hormone" for all the other steroids, and since my Total Cholesterol or LDL's aren't too high, I assume normal generation of Pregnenolone. My Pregnenolone is low, but later things such as DHEA(S) and Estradiol (at least on the saliva tests) are high; I take that also to mean that I'm making enough Preg. since I'm not running low on all the steroids.

    The DHEA(S) was high (probably in response to high ACTH), my Testosterone was low, and my saliva Estradiol was high. Since DHEA is a precursor to the Androgens, the increase will probably show up in them somewhere as well, (that extra DHEA has to go somewhere...). Because the Testosterone was low, this once again leads me to believe that when we check my Estradiol via blood, it will also be elevated, (or, it could be low as well, which means one of the DHEA enzymes aren't working).

    Progesterone was normal on saliva, and I think we've pretty much established that I've got low Cortisol production. My current hunch is that if we also check Aldosterone (a product of Prog.), we'll see a decrease there as well, and might even be able to trace back to what enzyme is having problems. I'm currently leaning towards "11B-hydroxylase", because if it was "21-hydroxylase" I would think we'd see elevated Progesterone.

    Once again, this is all stuff I just made up and I'm sure it has no scientific basis, but at least it gives me something to think about while I'm waiting for the Endo to call me back so I don't go crazy.

    Last edited by TheAntiEndo; 04-23-2008 at 08:25 PM.

     
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    Old 04-24-2008, 08:02 AM   #17
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    Speaking of "waiting for my Endo", I just called this morning to see if he had scheduled an appointment yet. He hadn't, but they let me make one in advance.

    Two months.

    Eight weeks.

    56 days.

    How in the world am I going to last two months, when every morning I wake up feeling like someone has "flavor injected" my cranial cavity with Grey Poupon? I actually have to build up my courage to go to bed each night because I know how bad I'm going to feel in the morning and how much courage it's going to take to actually get out of bed to get my daughter to school and myself to work. How am I going to last 56 mornings of being held in the P.O.W. camp that is my body? (And, if I did make it that long, he'll probably just run some more tests and make me wait another 2 months).

    I am in full on "Zombie" mode, and have been for weeks, (months?). I basically do nothing all day but stumble around in a daze. And, looking back at my journal, it's the same thing every year about this time, (only this time I don't have antidepressants giving me nasty thoughts about "running away").

    And, to add insult to injury, I'm the healthiest person in our house. The wife has Lyme Diseasee & Thyroid issues, and as much as she insists that her Lyme treatment has been helping immensely, she still has to take several naps during the day to (mildly) function. The kids act a lot like I did when I was there age, (impulse control, obsessing about toys they must have / being their favorite super hero / parties or plays they want to put together, lots of "potential" but never able to stay focused, convinced everyone at school hates them). They also have Lyme through the womb, and now I'm freaked out that they have whatever genetic flaw that will cause them to tank like I am when they get older. I have no outlets, no social life, and either I'm at work wishing I could go home to rest, or at home dreading going back to work the next day and have to act "normal" or else they'll fire my unproductive butt.

    The only reason that I somehow find the mental capacity to search the Net for answers is that for some reason I still have a strong sense of Self Preservation, (and doing so is the only thing I have found that still gives me hope).

    I was able to get an appointment with my GP for this afternoon, so if nothing else I'll have someone to listen to me ramble on about my nonsense theories about my illness, (and with any luck he'll find something I need to be hospitalized for that will last for a few days...).

    He're hoping that it all doesn't end by "exploding in a fiery ball that was visible from space".



    (Sorry for the "Dumping" - it's been a particularly bad week)

    Last edited by TheAntiEndo; 04-24-2008 at 08:14 AM.

     
    Old 04-24-2008, 08:10 AM   #18
    mkgb
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    Your thought process is good. In any reaction chain you have to take into account reactants.. their nature (limiting reagent and what not).. the mechanism/catalyst employed.. and the prooducts.

    You do have a similar bucket flow scenario.. but have to take into account that the kidneys will dump excess hormone out in the urine if we make too much.

    As to normal cholesterol.. normal pregnenolone production. This is a base assumption assuming that the mechanism creating the pregnenolone is behaving properly. My cholesterol is low.. always has been. My MD is fond of telling me to go eat lard. *shivers* Such a nasty thought. He also asks me if I lick salt blocks.. I don't I just have really high triglycerides.. my whole family does. *shrug* We also have to take into account what is normal for the average normal male used in the N A C B limit studies.. may not be normal for us.

    It is distracting and kinda fun to see iif we can out think our MDs and come up with the right answer. So far.. I have been right. Now I need more puzzle pieces to play with. I must say the cortisol was needed and my hubby is happy. I am getting my libido back. Now if I could just reset my internal clock so the urges are at a better hour.

    My SIL lacks the enzyme responsible for cartilage repair and maintanence. She is 29 and working on arthritis. It is possible to have a genetic flaw in enzyme production. it is possible to also determine if those enzymes are present or not. it is not a common test and may require visiting a research hospital.. but you can do it. I will be interested what you find out. I will share what I find out as well. It is interesting to figure out how you are put together and working on a fundamental level.

    I liked the bucket visualization.. well done.
    MG
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    Old 04-24-2008, 08:17 AM   #19
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    Going up in a blaze of glory huh? I like it. Just my style. If I have to go out.. why not with a big bang. Wallowing on the couch is such a sad end. Humm.. have you thought about going to a neurologist? I have one.. he is fun and good. He has had me do MRI's and a spinal tap. That was new. It showed that my antibodies were attacking my milan protien protecting the nerves in my brain. The increased fluid pressure and antibodies also caused migraines and visual anomolies and preliminary atrophe of my optic nerves. I have a neuro-opthamologist I see as well.

    The electrophysiology cardiologist is fun to work with and keeps close tabs on me. He feels that my endo and other mD let things go to far. He has been a doll. Is your GP an internal medicine specialist? it might be worth getting one as your GP. My latest GP is an integrative IM and she is handling my adrenal and thyroid mess... and what ever else shows up next.

    I used to like surprises.. now it is, Humm? Really? Well that is nice. My body just loves to self distruct doesn't it. *snort* I want salt.. gotta get some salt.

    MG
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    Old 04-24-2008, 08:28 AM   #20
    TheAntiEndo
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    Quote:
    Originally Posted by ******** View Post
    ...
    You do have a similar bucket flow scenario.. but have to take into account that the kidneys will dump excess hormone out in the urine if we make too much.
    ...
    Yeah, I forgot to mention the part about how each bucket has a finite holding capacity and anything over that will "spill" out, as well as that the liquid can evaporate (half-life) if left too long.

    Quote:
    Originally Posted by ******** View Post
    Going up in a blaze of glory huh? I like it. Just my style. If I have to go out.. why not with a big bang.
    Not so much a "blaze of glory", as more a distant star collapsing under it's own pressure, silently forming a new black hole, (yeah, so I'm having a bad day...)

    Quote:
    Originally Posted by ******** View Post
    Is your GP an internal medicine specialist?
    We moved across country a few years ago from the Pac Northwest. We had a DO there, and he was great. The problem was that we spent most of our effort on my wife b/c we didn't know she had Lyme until we moved here. I had always been a bit off on my health, but she always took priority because at least I could function, (even though my mental/social/emotional "quirks" always made things difficult for me).

    When we moved here, we couldn't find a DO close, and since we found a Lyme specialist close by, we didn't really have a big need to find a GP for the family. The one I did find had more to do with location compared to work and home then any specialty or quality of care. He's just a Family Prac doc, but as long as he lets me run labs, he's at least good for something. I've been too drained trying to keep things together (while suffering) to really have time to shop for a good GP.

    We'll, looks like I've got to get in the car for my appt. Wish me luck...

    Last edited by TheAntiEndo; 04-24-2008 at 08:35 AM.

     
    Old 04-24-2008, 08:34 AM   #21
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    Good luck! Post a new thread on the thyroid board looking for a good MD in X,X. You might get a winner.

    MG
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    Old 04-24-2008, 10:48 AM   #22
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    Well, GP was of no use. He didn't really know how else to help me. He suggested 325mg Iron Sulfate for the low Ferritin, and said just to wait to hear what the Endo says.

    Luckily, I was able to get him to do the Estradiol, (which he said he's never done on a man before), and on the way out I slipped him a quick, "Hey, while we're at it, how about Aldosterone?".

    I've been loading up on Iron this week, so they were able to get something out of my veins. Let's just hope that what comes back doesn't just lead to more questions.

    (Now, if you will excuse me, I'm off to find some sort of "quality-of-life raft" that will hold me afloat for the next two Moon Phases...)

    Last edited by TheAntiEndo; 04-24-2008 at 10:51 AM.

     
    Old 04-25-2008, 12:33 PM   #23
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    Got a call from the Endo.

    He said my T's "Looked good", and that even though my FSH was "undetectable" they only look at my FSH/LH if my T's are "Low". He said that my Total T didn't matter as much as my Free T's, and those "looked ok".

    He said my IGF-1 must have been a fluke, and that it really wasn't that high.

    Only thing he said he would do was run another ACTH Stim test to verify the results.

    Pretty much everything that was High/Low he dismissed, and is probably just doing the ACTH Stim again so he can dismiss any abnormalities and tell me everything looks ok.

    I'll bed if my Estradiol and Aldosterone come back high/low, he'll find some other way to dismiss those as well.

    I really need to find a new Doc...

    Last edited by TheAntiEndo; 04-25-2008 at 12:35 PM.

     
    Old 04-30-2008, 12:03 PM   #24
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    Estradial came back - 21 (5-66) - 26% of range.

    I didn't get the Aldosterone numbers yet, but the nurse called them "normal".



    Anyone else have any ideas? I'm stumped, anemic, confused, have tingly/numb toes, dumbfounded, will be subjected to more tests by my Endo before he starts me on adrenal relief meds, quickly losing hope (again), and once again I'm smack dab in the middle of the barren desert that is "Idiopathic Land".

    I've got an appt tommorow for a Doc who is somewhat between a Family Prac doc and an Endo, so we'll see if he has anything to add to this conundrum.

     
    Old 04-30-2008, 02:09 PM   #25
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    The tingly numb toes could be neurologial problems as a consequence of insufficient b12. It can manifest as peripheral neuropathy and also be more expansive, such as mental deficits etc. Not saying this isn't anything else going on. But, in my own case, I had low ferritin, low b12 (297), vit d, in addition to my hypothyroid ism as well as possible secondary AI as demonstrated by my low cortisol (not below range), impaired dirunal cortisol rythm and low end ACTH. I also have low female and male hormones, again not below range, but right on the cusp of bottom range. My view is to treat what you can to an optimum level and keep working on what is, in my view, a complex, situation - hormonal and vitamin status-related.

    See my response to your post How does low iron affect Adrenal function?

     
    Old 05-01-2008, 07:25 AM   #26
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    It took me ten endos (unfortunately 12 years) before I finally travelled 3000 miles to a decent doctor who took 5 minutes to diagnose me. Even though I live outside a major metro area with lots of well regarded hospitals... for some reason, no one thinks that hormones cycle (and when I asked the one endo - yo, what then is a period? he just walked out... literally... I am a bit of a wiseacre...LOL but I was mad and wanted to kick him in the er...)

    I talked to a vet once and he said all they worry about for their patients is quality of life - but for the human docs... well, I think (pretty sure) that is forgotten. I went through years of not seeing doctors after bad experiences and all it did was make me sicker, still, my case is so called "mild" yet I am disabled from it. Now I have a neuro-muscular issue and the neuro says well it is "mild" and I went wild (my husband understood from my Cushing's being called mild and my body being destroyed) and now my quality of life is now being destroyed and again, this is called mild.

    Sorry to get sidetracked but my point is... try to find another doctor before the damage is done. I don't travel 3000 miles anymore... I finally found one about 600 miles away.

    sorry for the rant.

     
    Old 05-01-2008, 08:09 AM   #27
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    I am branching out to 300 mi away I will let you know how that MD does.

    MG
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    Old 05-01-2008, 08:48 AM   #28
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    Rumpled: where are you going 600 mi away? I am now in PA and found a dr who seems to have the treatment protocol I think may help me. I am now in the 100 mile plus club! My family can't understand, but I am now so desperate and have spent so much money on "waste of time endos", that I am widening my travel range.

    Last edited by sparkles916; 05-01-2008 at 05:46 PM.

     
    Old 05-02-2008, 07:06 AM   #29
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    I see a doctor in Pittsburgh! Pa!
    How funny... Alleghany Endocrine Associates.

    Last edited by moderator2; 05-02-2008 at 02:10 PM.

     
    Old 05-02-2008, 07:37 AM   #30
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    Re: Does a morning ACTH of 69 (7-50) and an AM Cortisol of 8.8 (4-22) look like Prima

    I heard about a hormone-oriented Dr near Scranton, who I see in June. If he does not work out, I may end up in Pittsburgh! Thx

     
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