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Addison's Disease Message Board


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Hi,

I have been suffering from hypokalemia. I went through an insane work up at mayo clinic with no answer/diagnosis. I have been in the hospital for hyppokalemia, my aldosterone has been moderately elevated in the past which I believe made me hypokalemic. Recently, it has been discovered that my DHEA has been high also. And something with my prolactin is off.....I suffer from headaches, insomnia, fatigue, dizziness, muscle aches. Also, my thyroid has quit working so I'm hypo and am on synthroid. I have been trying to get my answers for so long. I know there's an answer. There has to be an answer why my potassium went to a 2.7 with squeezing chest pain and how it dropped in 5 hours from a 4.3- below a 3.0 and at that time my eyes were dialated, my heart rate was over 120 and I felt like I couldn't breathe....they also couldn't find/hear my blood pressure and told me to lay down on the stretcher and took me into the ER. I took a 40 of potassium bc I figured it was that....since my heart was so irritated. What do I do? I have climbed the mountains and back on this!!! IT's so frustrating!!!!!!!!!!!!!! Oh, and I'm enemic now too!!!! And my magnesium goes low, vitamin D. Is this addison's crohn's or conns or what is going on????????
You could be suffering from partial of total failure on both parts of your adrenal gland. Do a search on the web for Schmidt's Sydrome. I'm sure that you will be able to relate to the information that you find. Schmidt's Syndrome is an autoimmune disease which effects the endorcrine organs. Ask your doctor to check you for it. If the test comes back negative it does not mean that you don't have it. Schmidt's Syndrome is diagnosed when you have problems in multiple endocrine organs at one time. Have your doctor check your endocrine organs to see if they are slow. Remember your endocrine organs do not have to be slow in order for you to have problems. Often times your endocrine organs will start to misfire before they slow down. Have your doctor check for inconsistancies in these organs. Check your blood sugar regularly. You need to look for symptoms of diabetes/hypoglycemia. It is important that you get diagnosed with Schmidt's Sydrome early as not doing so can lead to failure is multiple or all of your endocrine organs.
Thank you for your reply. I will take your advice and bring up schmidt to my doctor. Although, I am sooooo frustrated with doctors at this point. If I suggest I want to be tested for something and they tell me no then I feel like I need to leave them and find someone who will run the tests for me..so it's been kind of a fragmented workup for me. Which is why no one can prob. figure out what is wrong with me bc they don't run all the tests and don't have all of the records! And I'm so exhausted from chasing this medical problem....I mean how frustrating to try to doctor yourself when you're not a doctor! I go to mayo on the 18 27 and 28! I am entirely tired of doctors...I feel they don't do their job and they just........like to hand out scripts more than get to the problem and real solution of things.
I understand your frustration with doctors! I had to go to between 200 and 300 doctors before I found one who would listen! I also had to have 28 unnecessary surgeries! My father is a doctor and I can tell you that doctors, most of them, are very weird people. Doctors also do not like to be second guessed or told what to do. When you deal with a doctor try to word your suggestions so that it seems like it is complimenting his/her intelligence. I suggest that you buy a book called " How Doctor's Think"- by Dr. Jerome Groupman. This book will help you learn to get the best out of your doctor.
The key is not to let yourself get stressed or frustrated because this will cause your illness to get worse. Be persistant. If you have what I think that you have, than you have a life-threatening illness.find a doctor who is good at dealing with Schmidt's Syndrome. You may have to call multiple endocrinologists and interview their office manager on the phone to see if the doctor has any experience in dealing with Schmidt's. If an endo can deal with Schmidt's than they have a good overall backround in all aspects of endocrinology. Remember, it takes on average of seeing seven doctors before you find one that you like. Your problem is very complicated and very rare so it may take you longer. Be your own advocate. You may need to educate your doctor about this. If this is the case than find a doctor who believes in you and one who is opened to trying new things. It's frustrating because when your sick you just don't have the energy to do this.
Be persistant and if you need help than email me. I have this disease and I understand it well. I was almost dead one year ago and now I'm thriving. You can too. By the way, I'm finding that although people with this disease have had symptoms of the disease for years before a major stress on their body, a major stress event can trigger the disease to become aggressive. Make your life as low stress as possible. Keep in touch.




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Thank you again for your reply. Wow, it really helps finding people who have the same struggles as you do....I have lost friends over this. They think I'm "crazy" bc I have been to so many doctors and I don't believe what they say. Sorry....I almost had a heartattach bc went off of my potassium supplements and my level was 2.7. and doctor told me to go off my medicine. ( and this has been going on since 2007 but now my symptoms are even more apparent and frequent than they were before). SO I have a hard time trusting them. I will buy the book that you suggested, it might help bc I struggle a lot with my relationships with doctors.

I notice my body can't handle much stress. I have a stressful job, I work at a hospital and it's demanding. I'm on thyroid medicine and I think it was making me sick and coincidentally, I came across an article that talked about how thyroid medicine can trigger the adrenals to go into crisis. After I took the med ( i took it consisitently for like a week or so) I was feeling very dizzy, like I was going to pass out. I felt totally out of sorts(right after I took the med a few times) and I was at work so I had to keep pushing through. But sometimes I get sick like out of no where, I feel sick to my stomach, I think lastweek I had black diarrhea (more than what you want to know) and abdominal pain. First nurse told me to go to ER but I didn't, I had to work. And I can't miss work, I mess up my job, I lose my really good benefits that I am fighting to have. But I notice I get sick frequently and duration is longer than normal and I'm down when I'm sick.....I can't move. Why do you think that I have this disease? I did read about it...it said that you have it if you have more than one endocrine disease/disorder...if I remember correctly. I will take your advice about searching for dr. who specializes in this and yes, chasing medical problems is very exhausting......so if i ever do get an answer I will be so proud of myself and I will write a book about it.
You should give me the name of your doctor. I could go there.....save myself a lot of searching....I don't care if it's far. If I get my answer, that's all that matters. I don't want to lose anymore time if you know what I mean.
Hi, I was wondering if you are still making progress? No post in some time. Are you still there? I would like to discuss some symptoms that my family is having.
i Was reading your post and have had many symptoms like yours self, I have primary addison's well as myoclonus & anticardiolipin syndrome & IBS amongst others many many things going wrong with me including neuro problems.

I'm no Doctor, But like yours self my potassium levels are low also my Vitamin D levels were none existent at one stage MY BP is now very high which use to be low,. if all your electero imbalances are out of whack your going to feel so ill..

I also suffer with all the other symptoms you are having and more, my heart goes out to you.

I have the chest pain like you are describing and i was wondering if you have had your B12 levels checked checked at all? As mine was extremely low and these can cause some of the symptoms you are showing, i must say since they found out i am B12 deficient and am having the B12 injections the chest pain has gone away but i know when i need another B12 shot as the chest pain comes back with the shortness of breath fatigue muscle pain, cramps, and intense fatigue, head aches blurry vision and much much more .

If you haven't had your B12 Levels tested please get it checked its really important, its a simple blood test and may help some of your symptom's.

Please let me know how you get on ....

Big hugs cheryl :wave:





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