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Old 01-14-2009, 04:32 PM   #1
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Recently diagnosed with Addison's, need info!

Hi, my name is Kathy. I was diagnosed with Addison's in November after seeing an endo at Mt. Sinai after seeing four endocronologists in Jersey that treated me like a psych case. I've been hospitalized 15-20 times since may. Each time I went to the er after two or more days of non stop vomitting and severe stomach pains. I had my gall bladder removed, and the episodes of vomitting and severe pain persisted. I was diagnosed right before major ankle surgery, thank goodness; my endo said I had so little steroids I wouldn't have survived the flu let alone major surgery. I'm still very confused because I have symptoms and lab results that don't seem to fit into what I've learned about Addison's. I haven't menstruated in 2 years, I'm lactating (my prolactin level is normal and was told it was "impossible" to lactate if that was the case, I literally had to take out my breast and show the dr.) My thyroid antibodies are sky high, but my levels are normal. I have a pituitary adenoma but am told that is just a coincidence. My vitamin D is exceptionally low. I'm on 10mg of prednisone but I still am so incredibly tired. I saw my gp today and my resting pulse was 140. My endo dr. says the vomitting episodes are addison's crises, but the dr's in the hospital always order a gastro consult- they're convinced I have an underlying stomach issue. I chose the user name hot mess because I am constantly sweaty and extremely hot; it may sound silly but it's extremely uncomfortable. There are days I have no energy and i can't eat a thing and I feel totally hopeless. My endo dr. seems great but she scared me at my last visit. She said having one organ fail increases my chances of having my other organs fail. She mentioned the thyroid, ovaries, liver and kidney. I am looking for any info anyone is kind enough to share. Particularly I am curious if my symptoms are typical, plus what if any tips anyone can offer on how to feel better. Thank you in advance to anyone who replies

 
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Old 01-14-2009, 05:01 PM   #2
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downen HB User
Re: Recently diagnosed with Addison's, need info!

First of all, I want to tell you I sympathize with you totally. When I read stories like yours, I feel like I'm not doing too badly (I have Addison's and MS, but I'm still leading a relatively normal life). If you're nursing a baby and going through all this, the fact that you're still standing is remarkable, and I give you credit for being such a fighter.

By reading through your post, I'm thinking that just about any doctor you come across is going to be in over his head. In my area (Midwest) we have the Mayo Clinic for difficult cases. Do you have any really good teaching/research hospitals you can go to? My gut is telling me that your hormones have kicked some autoimmune processes into overdrive. Your Addison's could be responsible for some of your symptoms, but there could be other things going on, as well. I was a mess, too, and my doctors just scratched their heads, and treated me like a psych case, too. Even my endo didn't think I had Addison's until they ran the tests. I know how hard it is to take the time to go somewhere else (I resisted, but I was not nearly as bad off as you seem to be), but I think you need some doctors that can think outside the box, and in my experience, these specialists just don't seem to have the ability to do so.

My thoughts are with you... MJ

 
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Old 01-14-2009, 08:55 PM   #3
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Re: Recently diagnosed with Addison's, need info!

Thank you so much for replying- this is my first time posting on anything- I was convinced no one would respond, and I really feel like I need all the info I can get from real people who have gone through it. I just want to clarify, I'm not nursing a baby, I have no idea why I'm lactating and neither do my dr.'s. Thank you for suggesting the Mayo Clinic, I don't know why I hadn't thought of that; my sister went there years ago when she had a chronic illness that no one could diagnose here. I really want answers to the symptoms that the Addison's does not explain. For instance, after my ankle surgery in November I spent four days on the heart ward with supra ventricular tacchychardia, which my endo dr said is unrelated to the Addison's; I saw a cardiologist and he was "intrigued" but had no answers. That, the lactating, the high thyroid antibodies, the swollen ankles, the weight loss, always feeling like its 110 degrees but my body temp is 96, the pituitary tumor, the super high pulse rate, the markers for a rare tumor (pheochromocytoma), the hand tremors, I feel like it all has to mean something. Also I have fine blond hair growing all over my face! They all seem to be endocrine related symptoms. The endo dr. I'm seeing now (she's the one who diagnosed the Addison's, everyone else literally blew me off) is at Mt. Sinai in New York and runs a research lab. She's taking me very seriously but I don't feel like she's investigating these other symptoms. I will look into the Mayo clinic. I'm not able to work right now, so if my insurance pays for it I'll be there! Thank you again for your kindness, and the suggestion, I will definitely look into it as soon as possible

 
Old 01-15-2009, 02:52 PM   #4
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Re: Recently diagnosed with Addison's, need info!

I too was put on prednisone when i was first diagnosed with addisons. My advice to you is first to convince your doctor to change you over to hydrocortisone (cortef). it' SO MUCH BETTER than prednisone, even though you have to take it two or three times a day.

 
Old 01-15-2009, 07:23 PM   #5
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Re: Recently diagnosed with Addison's, need info!

Hi Kathy:

I agree with Reemu, Hyrdocortisone is much preferrable to Prednisone for treating Addison's. You should probably also be on Fludrocortisone. However, I think you're right, and what's going on with you is much more than Addison's. Your symptoms do sound like endocrine issues to me, too, and it sounds like your hormones are all out of wack, hence the lactating, hair growth, etc.

Glad you're familiar with Mayo. It would be a long trip for you, but you need some answers. I am glad to hear you don't have the added burden of nursing a baby while all this is going on. Good luck, and let us know how you do!

MJ

 
Old 01-17-2009, 01:22 PM   #6
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Re: Recently diagnosed with Addison's, need info!

Yes, you should be on hydrocortisone, and possibly fludrocortisone. That is correct, in my experience. Your pituitary adenoma is NOT incidental. Even if it is small, and non-secreting, it definitely could cause your symptoms. My son was diagnosed with a non-secreting pituitary lesion. He has secondary adrenal insufficiency, from a lack of ACTH hormone, and is on hydrocortisone.

I would recommend you see another endocrinologist, one who has experience with pituitary tumors. What size is your adenoma?

Enzy

 
Old 01-20-2009, 05:51 AM   #7
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Re: Recently diagnosed with Addison's, need info!

I was diagnosed 10 years ago with Primary Addison's. I do not have any pituitary involvement. I had a hard time keeping my weight up at first. Now I am just the opposite. I have gained so much weight and I think it is from the steroids. I have hand tremors as well. I also get extremely warm and if I sit for too long, my ankles will swell as well. I have a fast heart rate. Just recently I started having problems of passing out. Now my doc thinks my heart muscle is weak due to the Addison's and being on the steroids for so long. I just wanted to let you know that most docs don't really understand the disease and because it is so rare, they really don't think to look for it. Like I said it took my doc many years to find out what I had and in the mean time, I felt like I was a hypocondriac(sp?).

 
Old 01-21-2009, 04:08 AM   #8
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Re: Recently diagnosed with Addison's, need info!

Thank you all so much for replying, it's giving me a lot of comfort to know I'm not alone in this. Every time I've been to the er the dr has said I was his first addison'x pt and that he didn't know how to treat me. And I know what you mean about thinking youre a hypochondriac! All the dr.'s I saw before my current physcian atrributed everything, the weight lose, the tremors the insomnia the menopose, to anxiety. That's rididculous, but after so many tests came back normal I started to doubt myself. I made a physciatrist appoinment and I must be the luckiest girl in the world because he said he didn't think it was psychiatric, but physical. From all I've heard about psychiatrists this never happens and I am so grateful to him for validating me and pushing me to advocate for myself.
One general question, does anyone else have addison's crises that end in vomitting and severe abdominal pain and hospitilization? I've learned now that when I start to feel unwell I need to triple my steroids but it took a while before I was able to recognize the symptoms in time. Before the vomitting and pain starts I am extremely tired and can't eat a single thing for a few days. Not even a cracker. I'm just curious about other people's experience with the crises. And to the last poster, do you mind if I ask how old you were when you were diagnosed. You mentioned your high pulse rate and the steroids and problems with your heart now. I've been wondering about that myself lately. My resting pulse is between 100 and 150 and has been for at least five years. I'm just afraid I'm going to get thru all of this and have a heart attack at 40! I'm also interested in hearing anyone's story who would like to share, when they were diagnosed, what their symptoms were, how they've managed, etc. I feeel like i've gotten all the info i can from journals and medical sites, know I really need to hear from reall live people, not just be quoted statistics. Thank you everyone so much

 
Old 01-22-2009, 12:52 PM   #9
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Re: Recently diagnosed with Addison's, need info!

I realize the pheo is a separate entity from the Addison's/pit issue. Is any doctor addressing it? If you have the positive tests for it, it needs to be removed so it is not stressing your body.

 
Old 02-18-2010, 01:20 PM   #10
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Re: Recently diagnosed with Addison's, need info!

Howdy,
It sounds like you need a good endo doc. All of the symptoms you describe are endo related/caused. Also, don't trust gp's, they don't know that much about your endo system and they'll screw you up every time. Good news though, once you're squared away you shouldn't even remember you've got Addisons-except if you get sick or hurt. If you do, increase your Cortef and you'll be ok. I've come through some pretty bad illnesses and injuries just fine (I'm not a real quick learner). Get on Cortef, pop your pills like you should and you can run with the big dogs. FYI, I was diagnosed 34 years ago. I've worked and played harder than most and I'm still here. Oh, the best thing you can do is stay/get in shape. You don't have to hit the gym 3 days a week but do walk, yard work, etc and eat right. Try not to drink to much either, I do and you can get a nuclear hangover with addisons:0. Take care!

 
Old 02-19-2010, 06:24 AM   #11
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Re: Recently diagnosed with Addison's, need info!

Your symptoms sound very similar to mine. I was diagnosed about 12 years ago. I am currently taking 20mg of Prednisone and .2mg of Floudrocortisone a day. when I start getting sick I up my dose to 30 or 40 for three days then wean myself back down every three days until I reach my normal dosage. I also am constantly tired no energy, sometimes no appetite. Although I have not been diagnosed with diabetes, I was told to monitor my blood sugars because they tend to either go high or low. There are days when I feel great and days I feel absolutley horrible. My GP has been a god send. He was the one that found it after many trips to the ER and almost passing out on the highway while driving. I did see endocrinologist and I have not found one I truly like. They treat you as if you don't know what your talking about. Who else would know your body better than you? Even after being on the steroids for many years, I still have elevated Sed rates, white cell counts (which can be caused by the steroids) and who knows what else. I haven't had a period in 5 years, I get extremely warm and sweaty and it can happen various times of the day and many times through out the day. I try to avoid anyone who is sick because when I get sick it takes me forever to get over it. Thank god I have only had an Addisonion Crises twice. And I hope to never have another one. If you go in for surgery, please, please please make sure they give you a stresser dose of steroids prior to surgery. This is extremly important. If you have any questions, please feel free to contact me.

 
Old 02-19-2010, 06:34 AM   #12
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Re: Recently diagnosed with Addison's, need info!

Sorry for the delay in response. I am 53 I was diagnosed when I was in my 40. But I had problems for a few years prior to my diagnosis. It started out gradual maybe once a year I would get symptoms, then it started becoming more frequent, 2x a year, then every month, then every week and then every day. I couldn't get out of bed. I had vertigo so bad the room was spinning. And you are right, the doctors treat you like it is all in your head. If something is not easy to diagnos they blow it off as if it isn't real. My first addisonian crises was about three years after being diagnosed. I started vomiting and couldn't stop. My husband came home from work and my kids were there with me. I had been vomiting for 5 hours. Finally they called the doc and he told them to get me into the ER. I was hospitaled for 5 days. The second time, they caught it early and I was only in the hospital for a couple of days on IV steroids.

 
Old 02-19-2010, 07:21 AM   #13
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Re: Recently diagnosed with Addison's, need info!

Hi Kathy,
Sounds like you're getting on track to be stabil. Once you are, start a mild excersize program-be sure to talk to your doc. The stronger you get, the tougher you'll be and, it'll be easier to endure stress. I was diagnosed at 12 (I'm 45 now) and my parents didn't hold me back from anything which allowed me to develop a very active lifestyle. You don't have to compete in triathlons (you can though) but don't be a couch spud either. I have never had a crisis. That's not to say I haven't gotten tired or felt real crappy with the flu but so far so good. Basically we need to prepare for the worst like a bad flu/infection or car wreck. These things will happen and you want to be able to deal with them-and you can. Shoot for being in the kind of shape so that when you do end up in the ER (like I to do from time to time because I've broken something) that when you tell the doc "oh by the way I've got Addisons disease" he'll look at you and say "you're kidding right?" because you're not in a crisis! I hope I've made you feel a little less worried about our condition and I just thought I'd share what's workin' for me. Good luck and feel free to contact if you want.

 
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