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Old 11-30-2011, 11:08 AM   #1
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Question Finally! A diagnosis! What now?

Through alot of pokes and prods and of course alot of "it's in my head" take your anti-depressents.. I was found to have secondary addisons. My adrenals were stimualted through the acth test but my pitutary isn't working. I've started Hydrocortisone, it took a week for me to have positive affects but it's better then being bed ridden for days/weeks/months ect.
My main question here is what now? I know I need to find a endo that knows something about this but I'm in Iowa and so far I haven't had any luck. It was through 2 years of persistance that I got diagnosed. The first few times the endo said it was so rare they didn't even test for it Now my fear is what if it's a tumor/immune system issue? My endo wants to wait 3 months to see how I'm doing with my meds, shouldn't I be getting a MRI? Or tests for Immune system issues? I tried to get this done though him and my GP, my GP says I have to goto through the Endo.. The endo doesn't seem to give me a answer either way other then to wait...
I'm not sure what I should do? Thinks in advance for any comments or suggestions. I've read alot of heartbreaking stories and I would like to get this resolved the best way possible.
~Thank You

 
Old 11-30-2011, 11:56 AM   #2
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gettin' better HB User
Re: Finally! A diagnosis! What now?

Congratulations on finally getting a diagnosis. You should ABSOLUTELY have an MRI of your pituitary to rule out a tumor. You should also have your growth hormone level tested, and your thyroid if you haven't already. I have secondary Addison's also - no tumor - and take Cortef, plus thyroid medication and growth hormone (Humatrope). It may be worth your while to go to a city where there is a good university hospital or clinic, and make sure you find someone who knows what s/he's doing. If it wasn't for my great endocrinologists, I don't know where I'd be today. Good luck to you!

 
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Old 12-01-2011, 12:37 PM   #3
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Talking Re: Finally! A diagnosis! What now?

Thank you for the quick reply! Thats what I thought from what I have read that is was best to see if it could be "fixed" before staying on a steroid and having to wake up my pitutary again. I did find out my TSH on my thyroid was a .33 baseline of .5 to 5. What is your thyroid doing? I don't know if the hydrocortisone will change TSH levels or not? I'm still searching for a good endo DR. in Iowa and no luck so far. How long did it take your to get to "your" normal level of feeling? I'm better but definetly not ready to make any big changes.. I've kinda got life on hold, but glad there might be a light at the end of the tunnel. What things did you go through leading up to your diagnosis? I'm 35 now and for probably 17 years I've had odd symptoms only in the last 2 years did they get very severe. I never could gain weight, slowly got the point of such fatigue, anxiety, nauese that getting out of bed and taking a shower was a big accomplishment. Looking back I saw lots of odd things but never bad enough for a diagnosis.
I look forward to hearing back from anyone about your story, what medecines you take and how you got your life back on track.
Thank You

 
Old 12-02-2011, 04:22 PM   #4
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gettin' better HB User
Re: Finally! A diagnosis! What now?

I wish I could say I have a "normal level of feeling." I know that some people with autoimmune problems seem to manage life just fine, but I don't. My whole life chaanged in 2003 when I was diagnosed after almost dying from the adrenal insufficiency. I don't have the same enthusiasm for life, don't have energy, and things are likely not to change. I had all the same symptoms as you (I already had Type 1 diabetes and hypothyroid), and my growth hormone level was practically non-existant, so I take that by injection now. I take Cortef (a total of 20 mg per day), Synthroid (.137), growth hormone (3 clicks), medicine for GERD, anxiety, depression, and high cholesterol. I never used to take a lot of prescriptions and was extremely active and involved with life. I hope that you will find you can reach that point. I don't mean to be discouraging, but this condition has completely changed my life. Good luck!

 
Old 12-06-2011, 05:18 PM   #5
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Re: Finally! A diagnosis! What now?

Quote:
Originally Posted by rhinodish View Post
Through alot of pokes and prods and of course alot of "it's in my head" take your anti-depressents.. I was found to have secondary addisons. My adrenals were stimualted through the acth test but my pitutary isn't working. I've started Hydrocortisone, it took a week for me to have positive affects but it's better then being bed ridden for days/weeks/months ect.
My main question here is what now? I know I need to find a endo that knows something about this but I'm in Iowa and so far I haven't had any luck. It was through 2 years of persistance that I got diagnosed. The first few times the endo said it was so rare they didn't even test for it Now my fear is what if it's a tumor/immune system issue? My endo wants to wait 3 months to see how I'm doing with my meds, shouldn't I be getting a MRI? Or tests for Immune system issues? I tried to get this done though him and my GP, my GP says I have to goto through the Endo.. The endo doesn't seem to give me a answer either way other then to wait...
I'm not sure what I should do? Thinks in advance for any comments or suggestions. I've read alot of heartbreaking stories and I would like to get this resolved the best way possible.
~Thank You
If your pituitary isn't working, you really need to have your free thyroid hormones tested, FT4&FT3, antibodies etc. I'm Hypopituitary, and currently replacing thyroid hormone. My endocrinologists explained that if pit isn't working, TSH is useless. Hopefully you will find n endo who understands how complicated all of this is. Good Luck!

Deb

 
Old 12-11-2011, 08:05 PM   #6
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Talking Re: Finally! A diagnosis! What now?

Thank you for the replys, still trying to find a doctor in Iowa, not having much luck :P maybe a trip to the Mayo Clinic in MN, if my insurance will pay any of it...
Gettin_better- are you hypo or hyper-thyroid? I hope things will eventually work out for the best.. Thats my fear is that I will be bed bound and have no life.. Right now I cant work and have a hard time just getting out of bed.
Jade-how about you? Hyper or Hypo? I will ask the Dr. when I actually get to talk to one again about the free t3/t4 test. I dont even know what thyroid test I had at my local Drs office. I just know the TSH was low .22 something..
I continue on with hydrocortisone 20 at 6am 5 and 5 early afternoon. Im better but along ways from good
Take care and God Bless.

 
Old 12-19-2011, 01:09 AM   #7
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albertnices HB User
Smile Re: Finally! A diagnosis! What now?

Finally, so what you can do more things later so it will helpful to you get proper treatment on the disease so you get comefortable, so keep it up and get well soon.

 
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