It's been a long time, I now have Addison's disease

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Bonaroo
Regular Member


Date Joined Feb 2006
Total Posts : 60
   Posted 1/18/2009 1:21 PM (GMT -7)   

Hi Everyone,

I hope the New Year finds everyone happy and healthy as possible, It’s been a long time since I’ve posted anything, But now I’m in need of a little help and need to find out as much information about addison’s disease as possible. I was just partially diagnosed with secondary addison's disease on Tuesday due to low blood cortisol of 1.5 with a reference range of 7-69, and a low ACTH of 3.7 reference range is 5.0-25.0, I had another test done on Thursday to see what my numbers are when not taking the Prednisolone; so they can put me on the correct dose, going off the meds was absolutely horrible, I was shacking, vomiting, sweating, dizzy and scared to death, I don't know much about this illness I do know my sister has it is as well, so she's been helping me through it. about 9 years ago they thought I had Cushings syndrome, the complete opposite of Addison’s disease, I had a urine cortisol of 828 with a reference range of 90 or less back then, now my blood cortisol level is 1.5.
I sorry I haven’t posted in so long, but I’ve been so sick lately and its really hard, I really need to need to find out as much information as possible about this illness, so I know what signs to pay attention to and for, so I'm off to read as much as I can. If anyone has any questions, comments or information that could help me please feel free to respond. I look forward to talking to everyone again. Take care and I’ll be back soon, best wishes,

Bonnie Bonaroo eyes


Addison's Disease just diagnosed Jan 09, Lupus, Loin Pain Hematuria syndrome also thin basement membrane disease or alports. Was told that it's possible I have both thin basement & alports. Have a history of blood clots, histoplasmosis, panic disorder, depression and pre-cancerous cells on my cervix, hysterectomy due to this in 2003. and many other health issues. 


AndreaRN
Regular Member


Date Joined Mar 2007
Total Posts : 91
   Posted 1/18/2009 3:07 PM (GMT -7)   
Bonnie, my prayers are with you. Sorry but I don't know any more than what I would read in a medical book or internet. Do they have any support groups available for you? I would think one would be so very valuable!!

Andrea
Women who behave don't make History!

C3-4 herniation
C4-5 disectomy & fusion (anterior)
C6-7 & C7-8 L laminectomies (posterior) (need R)
Partial removal of supporting Cervical Posterior Ligament
Constant shoulder pain & tightness.intermittent neck pain
bulged discs at C6-7 & C7-8

Chronic Pain with Vicodin 7.5/325 rx

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Bonaroo
Regular Member


Date Joined Feb 2006
Total Posts : 60
   Posted 1/18/2009 8:22 PM (GMT -7)   

Hi Andrea,

  Thank you for your prayers, and my prayers are with you as well. I’m not aware of any support groups in my area, I don’t drive due to my panic attacks, so I tend to get all my support from online support groups. I’ve read as much as I can handle about this illness for now, I’ll read more in the next few days, it’s pretty scary reading some of the things it does to you and what can happen, at least I have my sister to talk to about it, she just went thru a crisis at the end of the summer, so she’s familiar with the entire process. I guess what I’m going to do is just start talking on here as often as I can, it always seemed to help me before and its time to start doing it again and stop closing myself off from the world. I see that you have some serious pain issues as well, I hope that you’re able to get the relief you need, I know it can be very hard to get your pain under control, at least it is for me/Take care Andrea and thank you for responding, I look forward to talking to you again, and I’ll check to see if they have a support group near me and I’ll let you know if I go.

 

Bonnie

 


Addison's Disease just diagnosed Jan 09, Lupus, Loin Pain Hematuria syndrome also thin basement membrane disease or alports. Was told that it's possible I have both thin basement & alports. Have a history of blood clots, histoplasmosis, panic disorder, depression and pre-cancerous cells on my cervix, hysterectomy due to this in 2003. and many other health issues. 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13455
   Posted 1/18/2009 10:47 PM (GMT -7)   
Hello Bonnie,
 
I wanted to pop in and say welcome back to HW. I am so sorry to read about the partial dx of Addisons Disease. I did a check on Google for it, then went into the Mayo site and read briefly about it. From what I understand its a problem with the adrenal glands not producing the hormones sufficiently. If you have not read the info at the Mayo site I recommend that you do, very informative without a whole lot of gibberish only a dr can understand. From what I read tho its treatable and its considered an autoimmune disease.
 
With your sister having this disease at least you have someone close that can give you some first hand info and that will serve you very well I am sure. I just hope that you have a very good dr and he/she can get you on the correct medications which appears to be the hormones that the adrenal produce that you are deficient in. It also talked briefly about sometimes the pituitary(?) gland being involved. Its never good to be stricken with any illness or disease, however, if there is treatment available there is a little light at the end of the tunnel.
 
Knowledge is your best weapon and the more you can learn and get accurate info the better off you will be for sure. I am sure you are terrified, just don't overload your brain trying to learn everything you can overnight. Stick to the reputable medical sites online.
 
Please keep us posted here on how thnga are progressing. Gentle hugs coming your way.....Susie
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


Bonaroo
Regular Member


Date Joined Feb 2006
Total Posts : 60
   Posted 1/19/2009 4:33 AM (GMT -7)   

Hi Susie

  Thank you for the warm welcome back, sorry I’ve been gone so long. How have things been for you? How are you feeling? I’ve googled addison’s as well and have read a lot of the information, but you know how sometimes you can overload yourself with information? Sometimes too much at one time isn’t a good thing and can overwhelmed you, and I think that’s what happened to me, I wasn’t prepared for what I read.

I do know that it’s both my pituitary and adrenal glands, now they have to check to see if my hypothalamus is shut down as well. And you are right about my sister she’s been absolutely great, and she is so sick right now, they don’t have her on the correct medication for it, at least I don’t think she would be feeling so bad if they did, I felt like a completely different person once I started the meds, I actually had energy for the first time in about 10 years, I guess you could say I felt normal for once. Oh, I have great doctors now, that much I can say and for once all my specialist are on the exact same page, and not arguing with each other about my treatment. I’ll let you know what I find out tomorrow when the doctor calls me. Take care and best wishes Susie, with hugs coming your way too, talk to you soon.

 

Bonnie

Addison's Disease just diagnosed Jan 09, Lupus, Loin Pain Hematuria syndrome also thin basement membrane disease or alports. Was told that it's possible I have both thin basement & alports. Have a history of blood clots, histoplasmosis, panic disorder, depression and pre-cancerous cells on my cervix, hysterectomy due to this in 2003. and many other health issues. 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13455
   Posted 1/19/2009 9:54 AM (GMT -7)   
WOW what in the world happened on my page to make it long-HELP someone, can ya fix it??? Susie

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