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Addison's Disease Message Board
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Old 09-30-2012, 07:58 PM   #1
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newly diagnosed addisons

My college aged child is newly diagnosed with Addisons. It has been a rough couple of months getting (finally) this diagnosis and we are very frightened. The doctors keep telling us she should be fine, but she feels really lousy. How long has it taken people to get the disease under control? What is the quality of life like?

I appreciate any comments about what life is going to be like.

 
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Old 10-03-2012, 07:06 AM   #2
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Re: newly diagnosed addisons

Hello! My daughter was 12 when diagnosed with Addisons. She is doing okay. She does get tired easily but I don't know if it is because of her weight gain and too tired to exercise or medicine levels or her mild sleep apnea. She was not a very active child previous to the diagnosis-but we don't know how long she was dealing with this and we didn't know.
I would suggest getting a calendar and devote the calendar to your daughter's symptoms (or have her do it since she is in college). Jot down the days she is tired and how tired she is. We have discovered that when she is VERY fatigued, usually that means she is sick or getting sick (which affects their cortisol level). Nausea, dizziness, stomach pain, and trembling usually indicates that she is not getting enough cortisol. We have had to increase her dosage occasionally. She takes fludrocortisone as well and is on .2 mg a day. This is high for a child of her age. Our endo also wants us to keep up with any symptoms that could indicate another auto-immune disorder. Since she has one, she is more likely to get another than someone without an auto-immune disorder.
I would suggest for her to keep Gatorade with her on hot days or when she is sweating to keep her electrolytes in check. My daughter uses the sugar free kind.
Make sure she has a medic alert bracelet or necklace since she is not with you all the time. They make really cute ones available on the internet.
Have her carry extra hydrocortisone in case she can't get home at her dosage time. We have found that earlier is better than later in dosing. Take it early as opposed to later. She needs cortisol more during active times than night time. We have the injectable cortisol for an emergency or Addisonian crisis but we have never had to use it or rush to the emergency room for Addison's.
I know my 15 yr old would be glad to answer any questions she may have.
We try to keep in mind that at least it is a disorder that is treatable by medicine. Some people have it a lot a worse than her. She may want to talk to a counselor (colleges usually have this available at the health center) or you may need to talk to someone. I internalized my stress for a long time until it was obvious I needed some help in dealing with this. Take care and we will keep you and your daughter in our prayers. Let me know how you are doing.

 
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Old 10-15-2012, 06:50 PM   #3
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Re: newly diagnosed addisons

1) The most important aspect of successfully dealing with Addison's is the knowledge that you have about the disease and its treatment. There is a lot of available information on the internet and and a lot of good message boards that are specific to Addison's disease. You can not rely on the doctor your daughter is seeing because most endo's have very few Addison's patients. They will only have the basic information. This is just my opinion.

2) The timing and dosage of your cortisol is VERY IMPORTANT. Some doctors will prescribe 5 mg of prednisone once daily. This is the prescription that I started with. The problem with a single dosage of prednisone is that it takes several hours for it to "kick in". It would be noon before I felt like doing anything.

I change my cortisol treatment to the following:
1.25 MG of Predisone at Bedtime. This will give me a little bit of cortisol to start at about 3-4 AM. I then take 10 MG HC upon waking (I keep it by my bedstand). Then I take 5 MG of HC at 11 AM and 5 MG HC at 4 PM. This amount of cortisol is the equivalent of about 24 MG of HC.

I give myself more HC when I have sickness, stomach, or digestive problems, stress (either emotional or phyicsal), and in the summertime and sometimes in the winter. It is important to know your body and try to figure out when it needs more cortisol.

I take 25 MG of DHEA (over the counter). I use the Natrol brand. Make sure you a good source as theses supplements are over the counter.

I take the basic .1 MG of fludrocort and in the some double it. It is important to keep your salt and mineral levels at the right amount, which can be difficult at times.

I hope this helps. Addison's can be a lot worse than it needs to be if it is not treated properly/aggressively. I live an active life and really had to work hard to get it back!

Take care and post any more questions that you may have.

 
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Old 10-23-2012, 05:31 PM   #4
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Smile Re: newly diagnosed addisons

After a 3-day stay in the hospital and calling my endo simply to tell him that they changed me to Synthroid from levothyroxine (I have Graves' disease), my endo was right on it. As soon as he saw my initial hospital records, he suspected Addison's, and now a week later I have been diagnosed. He put me on 25 mg hydrocortisone a day and within 2 days I started feeling better. He confirmed the Addison's diagnosis this morning and I'll see him next week.

My biggest issue is this: The medical ID alert jewelry. It is just so indiscreet. I am a restaurant owner and manager. Customers are VERY nosy and I don't want them asking me about this. So I'd like to have something custome done, but what do I have engraved on it? Can somebody please answer this for me?

Thanks,
Lian

 
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Old 11-18-2012, 01:59 PM   #5
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hwbags HB User
Re: newly diagnosed addisons

Be hopeful.
I was diagnosed with Addison's as a 13 year old child (male). I had a very rough summer of fatigue and "dry heaves". Finally they guessed.... a cortisone shot ...... and now 45 years later I have done pretty well for most of that time.

 
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Old 01-06-2013, 01:46 AM   #6
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Re: newly diagnosed addisons

I was diagnosed at 8, im now 19, and I have had an essentially normal and good life so far. I will occaisionally get frustrated when I have the odd hiccup that come about from the addisons (like this year i got high blood pressure cos my fludrocortisone dose was too high - i was very fatigued, but the bp is now completely back to normal). Other than these few things that get in the way, I live every day the same as any of my friends and in a way, I wouldn't change my diagnosis even if I could because it has made me who I am. I am currently studying to be a nurse (cos of all the time I spent in hopsital before diagnosed - took them ages!) and my only worry for the future is in keeping my energy up during a high pressure job, but I've managed so far with energy while studying full time and working 25ish hours a week. It doesnt interfere too much with what I can or can't do, and my friends are all very good about it and either make no deal about it at all, or just show curiosity.
In regards to someone who asked about discreet medic alert jewellery, I just purchased a new medic alert necklace off a website (i used medicalert.co.nz as im in new zealand, but im sure there would be a site for each country), and they have things like dog tags and emblems that you can attach to a watch strap and stuff that is more subtle so people won't ask so often. I used to hate explaining, mostly because I wasnt really sure how, but I dont mind anymore.

Good luck everyone!

 
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