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Old 02-18-2013, 05:58 AM   #1
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Help with newly diagnosed ADRENAL INSUFFICIENCY "ADDISON's"

I am looking for advice on how to deal physically and emotionally with my newly found illness. I have been very ill for over a year but haven't felt well for as long as I can remember.
After doctor hopping for months a simple blood test showed low cortisol. So I was then sent to an endocrine specialist who didn't listen to anything I had to say then set an appointment for 6 months later for follow up.
I got very ill and could not wake up or function. It took 2 doctors calling the specialist for him to do the ACTH test finding I have adrenal insufficiency. Labeled Addison's disease.
I have had an MRI and all kinds of tests.


I need to talk to people who know what I'm going through. I have so many questions and it feels like my doctor doesn't think they are important enough for his time. Being newly diagnosed I am confused with the endocrine specialists not really wanting to deal with me. Is this so rare or uncommon that these highly educated specialists don't have a clue and its mostly experimental treatment. I am so scared as I have already had a crisis and I feel better but I still feel horrible. All of these test results are so confusing to me

I am taking hydrocortisone and we keep changing the doses and time. HOW LONG DOES IT TAKE TO FIGURE THIS OUT AND REGULATE MEDS?????

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Old 03-01-2013, 07:47 AM   #2
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Re: Help with newly diagnosed ADRENAL INSUFFICIENCY "ADDISON's"

Jo - Hi and welcome to Healthboards. I've been on here for a while for chronic pain issues, as well as specific diseases, and was trying to research "suppressed immune system" and so looked under Addisons. Sorry to hear that you have received your final diagnosis - it sure seems like you're not getting much help dealing with it or learning what to do next. Maybe if you read some of the threads on this board, other people's experiences will help you?
Other than that, I recommend that you call the endocrinologist's offce and ask a few questions like: "are there any booklets for patients about Addison's?" or "where can I learn more about my diagnosis?" "Is there a support group in this community for people who have it?". If the person on the end of the phone cannot help you, ask for the name & contact info for someone who can.
Last resort, you could do a web search for "Addison's Disease support", but I caution you to read material provided by recognizable groups, like hospitals or medical journal-type magazines only - some stuff of the web is not reliable, not true, and sometimes, downright scary.
Jo - I hope these suggestions help you out somewhat. Welcome to HBoards, and let us know how you've made out, okay?
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Old 03-01-2013, 08:07 AM   #3
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Re: Help with newly diagnosed ADRENAL INSUFFICIENCY "ADDISON's"

Jo, You will find lots of help and support here. Many people with Addison's get their illness well controled with the right mixture and dosing of the cortisone and mineralcorticoid (Fluorinef) if they need it. Many people take their hydrocortisone 3 times a day with most in AM (like 15mg, 10mg at noon, 5 in evening). This is just an example, not a recommendation, as you will need to work with your Dr on that. The other drug for salt, potassium and water balance is crucial if your electrolyes are off. Some people with Addisons lack it, and some do not, but if you have low BP, dizziness when upright, low sodium or high potassium, you probably need it. Addisons causes hypoglycemia too, so keeping blood sugar steady is super important, as low BS makes you feel weak, shaky, sweaty, nauseated, etc. It is important to recognize that and get your sugar up. That will get better as your Cortisone dose gets tweaked to just right levels. So explore the hypoglycemia info too, as that is a long discussion in itself. The good news is that now that you know what is wrong, you can feel better. Some people get better care at their local university clinics, where Drs seem to have more of an interest in the unusual cases and are up on the latest research etc. You might look into that possibility.

 
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Old 03-03-2013, 10:12 AM   #4
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Re: Help with newly diagnosed ADRENAL INSUFFICIENCY "ADDISON's"

Hi Jo
I was finally diagnosed with hypopituatory and secondary adrenal insufficiency in July 2012 after being ill for about three years. I take 20mg of hydrocortisone (10mg, 5mg & 5mg). I am still struggling with controlling the condition. My funny turns (hypos, low BP and dizziness) aren't as controlled as required to lead life to the full. I also have PCOS and do wonder if my funny turns are linked to my monthly cycle. I have found info from the Addison's website helpful also through these boards emailing fellow sufferers.

 
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addisons disease, adrenal insufficiency, hydrocortisone



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