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Old 07-14-2008, 12:16 PM   #1
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Adrenal/pituitary issues/abdominal pain....

Steel Town,
Your official diagnosis is Hypopituitary Adrenal Insufficiency?

My daughter has had her cortisol levels checked and I'm pretty sure they were borderline. I'll have to check again. I read somewhere last night that if your cortisol is normal but your thyroid is low you can have hypopituitarism. I'm not sure if they tested her thyroid but all the symptoms fit.
Since she is young they will not give her anything for her chronic pain or her chronic nausea. If they only had her pain for two days...they would treat it!

She's going to a new doc on Thursday. The gi doc said he can't help her...she needs biofeedback. I will ask the new doc about this. Can you recommend any questions I should be sure to ask???

Steve, Are you thinking that your pain could be something other than from the celiac? Or is this a different pain all together?? My next step after this doc visit is to try the wheat free diet. We've done sugar free and dairy free to no avail. She was tested for celiac but it came up negative. Can there be false negatives??

AteelTown, Do you have other chronic pain or is all of your pain from the adrenal insufficiency. Pain is pain is pain and if it lasts for more than 6 weeks....it is hell!!!

Thank you so, so much for your help(you too Steve)! It means the world to me and we have been searching and searching for an answer. I'm tired of seeing her in misery and she(who's always been an honor student and was taking honors classes a grade above her own) is now in danger of flunking out of school!!! So sad. I guess I need to bring this up with the docs. They don't understand the urgency!!! Thanks again and again,Mush
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease

 
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Old 07-14-2008, 01:23 PM   #2
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Re: Adrenal/pituitary issues/abdominal pain....

Trow,

I'm very sorry to hear that your daughter is going through what she's going through....I know first hand just how awful it is and how frustrating it can be not having any answers. The sad fact is that the vast majority of doctors have VERY little understanding when it comes to Adrenal Insufficiency because it is such a highly complex issue that must be dealt with by an Endocrinologist....and even most of them aren't very good.

If your daughters Cortisol tests were borderline, you should check into having an ACTH test done which is a test that determines whether or not her pituitary gland is producing the ACTH chemical that triggers the Adrenal glands to produce Cortisol. Also, I would ask your doctor to perform a saliva test to get a more accurate reading on her Cortisol levels......now I warn you....most doctors aren't even aware that there is such a test....but rest assured that there is. I STRONGLY STRONGLY STRONGLY advise you to purchase the book I recommended in the other thread. You can get it for around $12 with shipping. This is a HIGHLY complex issue and you need to educate yourself on it.

I FIRMLY believe my pain is related to the delayed diagnosis of the Hypo-Pit AI which can cause nerve damage. Thankfully I don't have any other pain......but this is enough to deal with so I'm thankful that I don't have anything on top of it. I can understand the doctors reluctance to begin an aggressive opioid treatment on your daughter at this point for fear of masking any further symptoms as they search for a diagnosis, but they should be willing to help with the nausea.....but I can also r elate to how unbearable the pain can be and that you simply LONG for relief....if only a temporary reprieve.

I am not sure if there is anything I forgot to mention, but please keep me posted on her progress and feel free to ask me any other questions you may have. It has taken me well over a year to learn to deal with this condition effectively and it requires a certain amount of lifestyle changes and how you deal with stress, fatigue, etc. The best thing you can do for your daughter at this point is to make sure that she gets as much rest as possible, trace minerals, eat ever 2-3 hours, avoid any excessive physical stress, and avoid as much emotional and mental stress as possible. I hope this helps....and I wish you two the best of luck!

ST

Last edited by moderator2; 07-14-2008 at 02:37 PM. Reason: posted disallowed website(s)

 
Old 07-14-2008, 01:31 PM   #3
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Re: Adrenal/pituitary issues/abdominal pain....

Steve,

There are two types of Adrenal Insufficiency. Primary and Secondary....with the former being most commonly referred to as Addisons Disease. In Primary AI, or Addisons, the pituitary gland produces the ACTH chemical transmitter that tells the Adrenals to produce Cortisol, but there is a structural or functional defect in the Adrenals and they simply cannot respond.

Secondary Adrenal Insufficiency can be caused by Pituitary Adenoma, functional issues with the Pituitary, or Corticosteroid treatment for prolonged periods in individuals with well-functioning Pituitary and Adrenal Glands. 85% of all Secondary Adrenal Insufficiency cases are caused by Pituitary Adenomas......I was in the minority of cases as my Pituitary gland simply stopped producing ACTH. The strange part is, ALL of my other hormones produced by the pituitary gland were ALL normal......

I am thinking that your Cortisol levels will come back decimated and that they will most likely start you on Cortef (Hydrocortisone), or Prednisone. I have tried both and respond much better to the Prednisone. The normal dosing is 3-5mgs in the am and then 2.5 mgs in the evening around supper time. The dosing is tricky in times of illness, or injury.....because your body requires more Cortisol at those times and you must provide it through artificial means......but they will get into all of that if/when it's necessary.

My pain is just below the solar plexis and slighty to the right.....it is a sharp,stabbing, burning pain.....and when I touch my skin in that area it feels as if it is on fire......sound familiar at all? I hope I have been of some assistance, and I wish you the best of luck.....please keep me posted of your progress and let me know if you have any further questions.

ST

 
Old 07-14-2008, 04:00 PM   #4
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Re: Adrenal/pituitary issues/abdominal pain....

Quote:
Originally Posted by trowftd3 View Post
...Steve, Are you thinking that your pain could be something other than from the celiac? Or is this a different pain all together?? My next step after this doc visit is to try the wheat free diet. We've done sugar free and dairy free to no avail. She was tested for celiac but it came up negative. Can there be false negatives??...
Mush,

I'm so sorry for your daughter's pain. What a drag to be denied pain relief because of one's (young) age. I realize the fear is lifelong opioid dependence, but there are other modalities to try.

About my pain - I don't know what I think at this point. I do have Celiac disease, which is painful when I have mistakenly taken in gluten. But not otherwise. I also have been diagnosed with IBS. I suspect this is the cause of my chronic abdominal pain, but SteelTown's post really interested me. I am finding so many things that I thought were random but now, in the light of my tumor, I'm finding it's effects go long and deep. Who knows what else I will learn is caused by this tumor? So I really just don't know Mush.

I have no idea about false positives with Celiac testing. I do know it's hard to diagnose. The only definitive test is a colon biopsy. Is that what she had, or was it a blood test?

steve

 
Old 07-14-2008, 04:03 PM   #5
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Re: Adrenal/pituitary issues/abdominal pain....

Quote:
Originally Posted by SteelTownPain07 View Post
...My pain is just below the solar plexis and slighty to the right.....it is a sharp,stabbing, burning pain.....and when I touch my skin in that area it feels as if it is on fire......sound familiar at all? I hope I have been of some assistance, and I wish you the best of luck.....please keep me posted of your progress and let me know if you have any further questions.

ST
SteelTown,

You are a wealth of good information. Welcome aboard.

Your description of pain does not sound like what I suffer from. Mine starts out as a constant dull ache and by day's end it is a constant severe ache, but not sharp. Plus, there's no pain to the touch, so I think we are describing different things.

Please stick around and keep posting. You make a great addition to our little family.

Thanks for your feedback!

steve

 
Old 07-14-2008, 05:38 PM   #6
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Re: Adrenal/pituitary issues/abdominal pain....

Thank you so much, both of you, for your support.
Steve, it's not so much that I want opiods for my daughter but something for the nausea. I get migraines and the nausea is unbearable. When I'm nauseous I can't do ANYTHING. I just wish for her to have even one day of relief!!

I don't having other questions at the moment. We have a doctor's appointment on Thursday with Adolescent Medicine at Children's Hospital in Seattle so I will bombard them with this info and try to convince them to refer me to an endocrinologist. All the doctors have given up on her. We've been to her gp, a pediatric gi, gi at children's and a therapist(who she still goes to). They all say there's nothing wrong with her. She's been throwing up since she was 2!!!!
It got really bad a 9 and we did a whole bunch of tests. She became extremely anxious and doctor phobic after this. The pain lasted for a year or so and eased over time until a year and a half ago. And it's worse this time.
Thanks listening...I'm soooo frustrated!!! Thanks,Mush
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Old 07-15-2008, 04:26 AM   #7
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Re: Adrenal/pituitary issues/abdominal pain....

Mush,

Can they not try Phenergan (Promethazine) for her nausea? My ENT gives it to me for nausea associated with vertigo, it works pretty well but can make me sleepy. It's an antihistimine so there shouldn't be much concern about continued use.

Tigg.

 
Old 07-15-2008, 09:26 AM   #8
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Re: Adrenal/pituitary issues/abdominal pain....

Quote:
Originally Posted by trowftd3 View Post
...it's not so much that I want opiods for my daughter but something for the nausea. I get migraines and the nausea is unbearable. When I'm nauseous I can't do ANYTHING. I just wish for her to have even one day of relief!!...
Mush,

I agree. I wasn't thinking of opioids exclusively, but just something to provide relief. One additional thing is anxiety. I know when I'm in an acute phase of anything bad I get anxious. Actually, when I have something that just keeps happening, I become fearful - like "when's it going to happen again?" I become afraid of the next episode. So I was even wondering if they could give her something for anxiety, which might also help with pain and nausea.

Tiggertoo's idea of phenergan is a really good one.

steve

 
Old 07-15-2008, 10:59 AM   #9
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Re: Adrenal/pituitary issues/abdominal pain....

Steve and Tigertoo,
I've asked about phenergan. It's what I take when I get a migraine but they act like thay haven't heard me. Not an option.

She is taking something for her anxiety and it has gotten a lot better. That's how she's been able to make it to all these doctor appoinments. But, it's not the magic pill. Thanks for your help.`Mush
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease

 
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