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Addison's Disease Message Board


Addison's Disease Board Index


Nausea!
Feb 11, 2007
Hi. It's been a bit since my last post and I wanted to update and hopefully get some feedback from those of you that know what we are going through.

I have had two cortisol levels come back low, one of them was done by an endo 2 yrs ago and he did the ACTH stim which came back okay. After the last one came back low my GP sent me to have the am/pm cortisol and ACTH. Those came back normal. There was a 2 wk delay between the low cortisol and then the am pm test, don't know if that makes any difference but wondering how often I should push to have this checked. From what I understand it's not uncommon to have normal results but still have addison's. I noticed that my gums are discolored again now and I've been extremely nauseated for the last couple of days. I haven't been sleeping well despite taking meds to help I can still only get about 5 hrs a night. I'm exhausted.

My 10 yr old daughter that has a seizure disorder has been ill also. She has been very constipated and complaining of a sore throat for over a month. I took her to the doctor 2x last week. The first diagnosis was reflux and she started taking prevacid... that didn't help and she started running a fever so I took her back to the doctor two days later after finding her on the bathroom floor at 5 am having a seizure. While I had her at the GP I explained to him that she is suspected of having a metabolic defect but that it hasn't been diagnosed so I'm wondering if it could be an endocrine problem since that controls your metabolism. He agreed with me that one could certainly make that connection. I showed him a large white spot on her arm (vitiligo) and told him about the dark streaks she gets on her neck from time to time. He checked her cortisol and guess what? It came back low also. :eek: I've been looking through previous labs in her records and she has had a low sodium level several times, she also has high cholesterol. I also read somewhere that addison's can be hard to distiguish from renal failure and that really caught my attention because they have noted possible renal failure in her medical records several times when she was a toddler.

There is so much that is going on and so much history that it's hard to put into one or two posts but I am almost 100% positive that my daughter and I both have addison's and I need help and advice on how to get diagnosed and treated. I have an appointment scheduled with my endo that found the low cortisol initially but can't get in until early April. I can't bare the thought of dealing with all of the symptoms that long. I do plan to go to that appointment fully armed and prepared. I even have photos of me last summer with dark blotches all over my face, you can see them in the pictures even though I covered them with makeup. My daughter is scheduled to see an endo at Mayo early next month. Again, the wait is agonizing since I can clearly see that she is not well and needs treatment asap. I've asked them to get her in sooner but it hasn't happened. She had a am/pm cortisol and ACTH on Friday and I'm hoping to get those results by Monday or Tuesday.

One other question, is it true that the ACTH should be drawn in the afternoon for addison's? They did mine at 8 am with the cortisol.
Re: Nausea!
Feb 13, 2007
Re your post below:
I have read the ACTH test should be done at 8am. Or somewhere around the time you normally wake up. I am sure of this. Also, one shouldnt be drinking caffeine because it screws your adrnals. I for one thing, went for years w/o caf and started again, and had actual pain in the adrenals. I have taken the oral test first, and came back low but not too bad, but not normal.. Used a acth to verify. and the baseline was slightly high..(probly due to caf use) and the reserve was dead....barely went up...(thats VERY bad) like you die when you get sick.




[QUOTE=mscozzy;2793601]Hi. It's been a bit since my last post and I wanted to update and hopefully get some feedback from those of you that know what we are going through.

I have had two cortisol levels come back low, one of them was done by an endo 2 yrs ago and he did the ACTH stim which came back okay. After the last one came back low my GP sent me to have the am/pm cortisol and ACTH. Those came back normal. There was a 2 wk delay between the low cortisol and then the am pm test, don't know if that makes any difference but wondering how often I should push to have this checked. From what I understand it's not uncommon to have normal results but still have addison's. I noticed that my gums are discolored again now and I've been extremely nauseated for the last couple of days. I haven't been sleeping well despite taking meds to help I can still only get about 5 hrs a night. I'm exhausted.

My 10 yr old daughter that has a seizure disorder has been ill also. She has been very constipated and complaining of a sore throat for over a month. I took her to the doctor 2x last week. The first diagnosis was reflux and she started taking prevacid... that didn't help and she started running a fever so I took her back to the doctor two days later after finding her on the bathroom floor at 5 am having a seizure. While I had her at the GP I explained to him that she is suspected of having a metabolic defect but that it hasn't been diagnosed so I'm wondering if it could be an endocrine problem since that controls your metabolism. He agreed with me that one could certainly make that connection. I showed him a large white spot on her arm (vitiligo) and told him about the dark streaks she gets on her neck from time to time. He checked her cortisol and guess what? It came back low also. :eek: I've been looking through previous labs in her records and she has had a low sodium level several times, she also has high cholesterol. I also read somewhere that addison's can be hard to distiguish from renal failure and that really caught my attention because they have noted possible renal failure in her medical records several times when she was a toddler.

There is so much that is going on and so much history that it's hard to put into one or two posts but I am almost 100% positive that my daughter and I both have addison's and I need help and advice on how to get diagnosed and treated. I have an appointment scheduled with my endo that found the low cortisol initially but can't get in until early April. I can't bare the thought of dealing with all of the symptoms that long. I do plan to go to that appointment fully armed and prepared. I even have photos of me last summer with dark blotches all over my face, you can see them in the pictures even though I covered them with makeup. My daughter is scheduled to see an endo at Mayo early next month. Again, the wait is agonizing since I can clearly see that she is not well and needs treatment asap. I've asked them to get her in sooner but it hasn't happened. She had a am/pm cortisol and ACTH on Friday and I'm hoping to get those results by Monday or Tuesday.

One other question, is it true that the ACTH should be drawn in the afternoon for addison's? They did mine at 8 am with the cortisol.[/QUOTE]





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