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Old 03-31-2010, 10:09 PM   #1
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abby1972 HB User
Please someone help me !!!!!!!!

Ok , i'm not sure where to start. I'm going to try and make this as short as possible. I starting seeing a new Dr. about a month or so ago .The reason i went to this Dr. is because someone told me he would keep trying until he figured out what was wrong with me. He done some blood work and my cortisol came back 2.0 and my dhea was 46.0, this was at about 3 in the afternoon. So he put me on all these supplements and vitamins (32 a day). So now i have been on them for a while and i thought that i should be seeing some inprovement by now, but i haven't ifeel 10 times worse. I called my Dr. yesterday and i told him what was going on and he said maybe i had a reaction to one of the supplements and also told me that i should expect it to take 6 to 12 months to feel better because i had been on seroids for a long time. The thing is I HAVE NOT BEEN ON STERIODS ,he assumed that since my cortisol was so low that i had been. Ok so he called me in some hydrocortisone and said to take 10 mg in the morning and 10 in the evening. Well today i tried that and it made me feel a little better , so i tried alittle more and it made me feel great ! My questions are can i take 30 mg of this medicine aday ? And also they can't get me a appt. with a endo until June 1,will it mess my test results up when i go see the endo because i'm already taking the hydro ? Please someone please give me some ideals , i feel so bad i don't even feel like getting a shower ...let alone taking care of my 4 children and working ! PLEASE HELP ! Thanks , Abby

 
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Old 04-01-2010, 07:31 AM   #2
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kristiann HB User
Re: Please someone help me !!!!!!!!

Your cortisol level is WAY too low. I was near death when diagnosed and mine was 0.8. Three days later after 40mg of hydrocortisone each day it ws 2.4. Is there any way that you can get into a doctor faster? You really need a full panel of tests. My first advice is to push for that. An Addisonian crisis is quite possible when people are under treated or not properly treated. Even the advice on this forum cannot take the place of good lab work.
Having said that....You can take more of the hydrocortison and probably should. I do think it will mess up your future tests though.
Many people with Adrenal disease waste salt so their sodium and chloride levels can also be dangerously low. You really should have those tested too. In the mean time it won't hurt to increase your salt intake and if you are feeling at all dizzy or lightheaded you should do that.
It sounds as though you are on the right track but your providers are seriously lacking in their approach to helping you. Good luck!

 
Old 04-01-2010, 06:44 PM   #3
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abby1972 HB User
Re: Please someone help me !!!!!!!!

Thank you so much for your reply. I really feel nobody hears me when i tell them how bad i feel. It's great to be able to get on here and find people like you , who have been through all this. Did you have the tan skin and all the other things that i've read that happens ? Again thank you for your reply ! Abby

 
Old 04-02-2010, 05:39 AM   #4
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Re: Please someone help me !!!!!!!!

Hi Abby,
I was tan all over, went from 120 to 106lbs, terrible joint pain, headaches, dizziness, fatigue, nausea....pretty much had it all. I am so thankful that I was diagnosed, even if it was eventually, properly. The tests are dificult though so I just don't get why your doctors would begin to treat you without taking the time to really check things out. I hope you can find a proper doc. Good luck. The hydrocort should help though...eat lots of salt too, just in case. I go through a jar of pickles a week for sure.
Kristen

 
Old 04-26-2010, 05:57 AM   #5
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Re: Please someone help me !!!!!!!!

Be very careful with the steroids! Too much and you could become cushinoid,also dont just stop taking them either (shock). I am primary adrenal insufficient (Addison's) and I take 20mg in split doses and my ACTH is only 0.5. Too much steroids and you will feel like superwoman or man at first and then you will have severe mood swings (anger,depression),so please be careful especialy around your children! Your family doctor might could help more, remember to take the least amount of steroid possible.

 
Old 04-26-2010, 01:35 PM   #6
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Re: Please someone help me !!!!!!!!

Hey kritiann , sorry i haven't replyed ! I finally got in to see a Endo a couple of weeks ago . He done the first round of tests and they came back ...cortisol 4.5 , aldosterone <1.64 and ACTH 7. I went back last week and he dosen't seem to think i have a problem . I asked wasn't a cortisol reading at 10:00 in the morning of 4.5 awfully low and he said that it was on the low side but that could be my normal. He was not very nice at all, acted like i didn't even need to be seeing him. He also found a nodule on my thyroid , but said he didn't think it was anything to worry about and that i should come back in 3 months to see if it had grown. He did go a head and do another test where he gave me a injection and then had to wait 45 minutes and get blood drawn. Wouldn't tell what the test was or explain anything to me . I even took my husband with me so hopefully we could find out what was going on. That didn't help any. I am getting to where i hate doctors , i know that is a strong word but they act like you are stupid or something. I still have my other appt. in June with another Endo , i am still going to that one . i just wonder if i should take the tests i have already had done or just let them do new ones. Anyway thank you so much for writing me and i would love to hear your thoughts on my new test results. thanks again !

Last edited by abby1972; 04-26-2010 at 01:36 PM.

 
Old 04-26-2010, 01:46 PM   #7
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Re: Please someone help me !!!!!!!!

Hi Thanks so much for your reply ! I think you might be right. At first they were making me feel alittle better , but now not so much. I am having trouble with my heart skipping beats and flip flopping, bad headaches , having trouble going to sleep and oh my god i am so mean and depressed i don't see how any of my family puts up with me. You said your Acth was low ...this is what i don't understand the endo said he expected mine to be higher and since it wasn't he didn't seem to think that there is a problem. Did you have a hard time getting diagnosed ? What was your cortisol at the time ? I would love to hear your experience and thank you so much for writing it really does brighten my day when i can talk to someone who understands !

Last edited by abby1972; 04-26-2010 at 01:47 PM.

 
Old 05-10-2010, 11:00 PM   #8
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Re: Please someone help me !!!!!!!!

Quote:
Originally Posted by abby1972 View Post
Ok , i'm not sure where to start. I'm going to try and make this as short as possible. I starting seeing a new Dr. about a month or so ago .The reason i went to this Dr. is because someone told me he would keep trying until he figured out what was wrong with me. He done some blood work and my cortisol came back 2.0 and my dhea was 46.0, this was at about 3 in the afternoon. So he put me on all these supplements and vitamins (32 a day). So now i have been on them for a while and i thought that i should be seeing some inprovement by now, but i haven't ifeel 10 times worse. I called my Dr. yesterday and i told him what was going on and he said maybe i had a reaction to one of the supplements and also told me that i should expect it to take 6 to 12 months to feel better because i had been on seroids for a long time. The thing is I HAVE NOT BEEN ON STERIODS ,he assumed that since my cortisol was so low that i had been. Ok so he called me in some hydrocortisone and said to take 10 mg in the morning and 10 in the evening. Well today i tried that and it made me feel a little better , so i tried alittle more and it made me feel great ! My questions are can i take 30 mg of this medicine aday ? And also they can't get me a appt. with a endo until June 1,will it mess my test results up when i go see the endo because i'm already taking the hydro ? Please someone please give me some ideals , i feel so bad i don't even feel like getting a shower ...let alone taking care of my 4 children and working ! PLEASE HELP ! Thanks , Abby
Abby you need to calm yourself stress can take a toll on ur health. I would say keep taking 30 mg a day if thats what feels right. listen to ur body. either way your endocrine doc has to test u to see what is the correct dose. When you have low cortisol usually you take hydrocortison and its accompanied by fludrocortisone. so check that out. My son tyler was diagnosed with Addison at the age of four. I get my sons levels about once a month and he is on his meds so I think the test will still show if you continue the meds. Its hard to handle but once your on the correct dose then you will feel better. My son was sick for 5 months before he was diagnosed. so hang in there. my prayers are with u.

Last edited by tori a; 05-10-2010 at 11:00 PM.

 
Old 05-10-2010, 11:04 PM   #9
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tori a HB User
Re: Please someone help me !!!!!!!!

Quote:
Originally Posted by abby1972 View Post
Ok , i'm not sure where to start. I'm going to try and make this as short as possible. I starting seeing a new Dr. about a month or so ago .The reason i went to this Dr. is because someone told me he would keep trying until he figured out what was wrong with me. He done some blood work and my cortisol came back 2.0 and my dhea was 46.0, this was at about 3 in the afternoon. So he put me on all these supplements and vitamins (32 a day). So now i have been on them for a while and i thought that i should be seeing some inprovement by now, but i haven't ifeel 10 times worse. I called my Dr. yesterday and i told him what was going on and he said maybe i had a reaction to one of the supplements and also told me that i should expect it to take 6 to 12 months to feel better because i had been on seroids for a long time. The thing is I HAVE NOT BEEN ON STERIODS ,he assumed that since my cortisol was so low that i had been. Ok so he called me in some hydrocortisone and said to take 10 mg in the morning and 10 in the evening. Well today i tried that and it made me feel a little better , so i tried alittle more and it made me feel great ! My questions are can i take 30 mg of this medicine aday ? And also they can't get me a appt. with a endo until June 1,will it mess my test results up when i go see the endo because i'm already taking the hydro ? Please someone please give me some ideals , i feel so bad i don't even feel like getting a shower ...let alone taking care of my 4 children and working ! PLEASE HELP ! Thanks , Abby
Abby you need to calm yourself stress can take a toll on ur health. I would say keep taking 30 mg a day if that's what feels right. listen to ur body. either way your endocrine doc has to test u to see what is the correct dose. When you have low cortisol usually you take hydrocortison and its accompanied by fludrocortisone. so check that out. My son Tyler was diagnosed with Addison at the age of four. I get my sons levels about once a month and he is on his meds so I think the test will still show if you continue the meds. Be careful taking those supplements they can be dangerous to your health especially taking hydrocortison. Its hard to handle but once your on the correct dose then you will feel better. My son was sick for 5 months before he was diagnosed. so hang in there. my prayers are with u.

 
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