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Addison's Disease Message Board

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Gillian -

It has taken me over 2 years to finally find an answer to what is going on with me. It all started back in Feb 03 - one morning it just started. I was in the bathroom brushing my teeth and I had a MAJOR dizzy spell. I thought that maybe it was that it had been a while since I had ate anything, but throughout that day I continued to have them. For the next 5-6 months I was having 15-20 dizzy spells a day. I had just had a baby in Aug '02 so it was really hard because there were times when I had almost dropped him when a dizzy spell hit.

I went to the doc right away. They first thought that it was an inner ear thing. I must have seen 5-6 docs about that. I also saw a neuro who thought that it was a blood pressure problem and she sent me back to my family doc to be placed on blood pressure meds. At that time, when they checked my BP, from lying to sitting to standing it would go from 130/72 to 106/66 - huge drop. They never were watching my pulse rate at that time though as far as I can remember.

Well, my family doc said, no way, you are only 29, that isn't it - that wouldn't hit you out of the blue. So on to more docs who had no clue. No meds were working, I wasn't getting any answers, so after about 7 months of trying to figure it out, I stopped going to the docs and figured I would just live with it. The spells tappered down to 2-4 a day. My dizzy spells usually have a warning - I start to feel lightheaded, then the rooms spins, then my heart races, then I get flush, then I get that clammy feeling and if the spells are bad enough I get nauseated.

Fast forward to July '04 - I hit my head on a closet door while cleaning. I ended up with a concussion. My family doc was moving and since I was having so many medical problems my doc referred me to an internal med doc (I also had an ulnar nerve transposition due to a work comp issue - which, BTW has now turned into RSD). Upon seeing him we were discussing everythign that was going on and I told him about all this dizziness stuff, his first thought was Addison's. So we did a little testing and yep, little to no adrenal function. So onto the prednisone. Guess what...the dizzy spells went away except for 1 every 3-5 weeks, but then they were MAJOR spells that took me out the rest of the day.

Well, this past january I kinda started to question the Addison's diagnosis because I was still having these other spells and I was worried about taking the prednisone. I was gaining TONS of weight, but not getting enough answers so I went to an endocrinologist. He didn't think that I had Addison's because I didn't fit EXACTLY into the values set for an Addison's diagnosis. So we did some tests. The costyropin test came back that yep it was Addison's, but then the next day the ACTH and 2 other blood draw tests came back neg. So, we decided to do a definitive metyrpone test 2 weeks ago. I told my doc the only way I would do it would be if I were in the hospital. So 2 weeks ag I checked myself into the hospital to do the test and that is where the hell started. I swallowed the pills at midnight and 45 minutes later I was throwing it all up.

Here is the link to my post as to what happened from then:

So they told me the metyropone test was fine when I was in the hospital, but the final test results came back differently - I have primary adrenal insuffiency. Mayo said that they are more concerned with the POTS at this time. Even though when they retested over there, they said, yes, you are defintely on the low side. I am just not sure what to think about that whole thing because I am unable to function at this point.

Today my internal med doc said the reason I am not getting any better is because I do have Addison's and I need to medication in order to recover from all this. When I was in the hospital he was yelling at the other docs that they were making me worse. I honestly think that that metryopone test put me into a crisis. Never mind the endo wanted me to stay home and take the meds - can you imagine! I was reminded again today by my doc that I almost died in the hospital, my breathing was so slow and inconsisent they weren't sure what was going to happen.

Anyway...I am now on some beta blockers in hope of slowing down my heartrate so it does not jump from 80 to 140 when I stand up. I can tell that that is working, however, when I stand for longer than 15 secs the dizzies come flooding in. Right now I am also having MAJOR chest pains. I saw a cardio today and am now waiting until Tues to have an echocardiogram. They think that it is one of 2 things. Either costochondritis or pericarditis. My internal med doc thinks that going back on the prednisone will help with the chest pain, so I hope because it is VERY hard to breathe. The cardio today couldn't even believe how bad it was. When he told me to talk a deep breath so he could listen to my heart, I could barely, he said "Is that all you can do? That is pretty awful." I am at a pain level of 10 out of 10 and right now even methadone is NOT taking care of the pain.

I have to go back to Mayo for another test in a week and from my understanding they are planning on placing me on more meds, but I am not sure what at this point. I am going to physical therapy just to get back on my feet.

Life majorly sucks right now. My two little boys just don't understand. My 6 year old is having a VERY hard time. He broke down in school yesterday and ended up in the counseling office. He started crying saying "My mom is back in the hospital" (I was back in the ER the night before with MAJOR chest pains). I feel so awful for puting them through this. This is not their mom. For heaven's sake, I am only 31! I am having a very hard time wit all of this. I just feel like more and more things just keep happening. To add to all of this they are telling me that I have RSD and we are now trying some funky stuff to see if it helps. I am just at a loss at this point.

What tests did you have done to be diagnoised with POTS? Do you also have Addison's?

I hope you are able to find some answers. Even at Mayo we ask our questions, and mainly their response is, "We don't know." Great to hear from the Medical Gurus, eh? I hope I can help you find some answers too. Let me know if I can help!


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