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Amazing....I am just not even sure what to say. When I was in the hospital the dr said that the metryopone test came back normal. Well, I got a letter yesterday and an appointment today and the final test results came back that it is primary adrenal insufficiency.

So now I have 2 MAJOR things to deal with...I am now off work until further notice.

I was seen in the ER on Tues with MAJOR chest pains. They are not exactly sure what is the cause just yet. Next tues I have a echocardiogram to rule some things out. Mayo thinks that the chest pain is due to the POTS.

And the dr. says that my arm and hitting my head back in July have now turned into RSD. Nice, eh? As if I do not have enough stuff to worry about. So, we are going to try a bunch of treatments over the next few months to see if we can get things to all work themselves out.

Please cross your fingers...I need some MAJOR prayers at this point. I can't handle any more medical issues.

~Lisa
Hi Lisa!

I am relieved that they were able to confirm your diagnosis of Addison's. I have to admit I was worried that POTS wasn't explaining everything you were experiencing. I have heard of quite a few people diagnosed with POTS only to discover later that it was only part of a bigger picture of other hormonal issues. Did they test your aldosterone and renin levels while you were there? I really hope that steroid replacement and florinef (for low aldosterone) will help you feel much better soon!

I get pretty bad chest pain with shortness of breath that no one can find a cause for. I went to an ER last year but no one found anything (of course). It is frightening and I always worry about what might really be causing it. I am awaiting another echo in a few weeks. I hope your exam is completely normal-you're right two issues are enough, already!

Good luck with the additional testing and let us know what is happening! I wish you the very best and hope you find all of the answers soon.
Sadie
Hi Lisa,
I rarely use this message board anymore so forgive me if I am asking questions you've already answered, but I see you mentioned you suffer from POTS. I so rarely see anyone else with the same disorder as me, and was wondering if you could fill me in on your back story with POTS and your symptoms. I've been ill for over 2 years and have been diagnosed with both POTS and Celiac Disease, and Colitis. I am still having disturbing symptoms though, and was wondering what else might be going on with me...maybe hearing your story could help. Thanks!
Gillian
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: http://www.healthboards.com/boards/showthread.php?t=265306

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!

~Lisa
Hey Lisa,

I am reading your story and the thought that comes to mind is...has anyone worked you up for a pheochromocytoma or carcinoid? They can present with orthostatic hypotension (a sort of POTS, I think), chest pain, flushing, etc. Do a search and read about the symptoms and see if any of them fit. Your adrenals are doing funky things to you-it is just a question of what exactly they are doing. Has anyone done any MRI or CT imaging of your adrenal glands recently?

Did they check your aldosterone and renin levels? This is a critical part of your diagnosis. What if you need florinef, too?

I'm worried about you! I hope you find answers soon...they are there-I just know it! Good Luck!
Sadie
Lisa,

I really feel for you, and am praying for you. How hard it must be, especially since you have children. I am scheduled to get tests TOMORROW finally, for adrenal insufficiency. I was supposed to get them last week, but everything with the doctors is taking longer than expected. What scares me about your story is that my problems actually started with a supposed balance/inner ear disorder, but after many doctors and the top neurologist at Yale-New Haven Hospital in Connecticut, a cause for my severe dizziness and vertigo for nine months straight was never found. After the "inner ear disorder" and the massive antibiotics they gave me "in case it was a bacterial infection", I've been sick, but with symptoms resembling adrenal problems instead of dizziness. Maybe I should mention to my doctors the possibility of POTS, even though you said that it's rather rare. Thank you for sharing your story, and I wish you better health!
~Katalina
Katalina, your mention of massive antibiotics has me wondering if you might have a yeast situation going on. Yeast can get a foothold during antibiotic treatments and can present like chronic fatigue/adrenal problems. Did you take diflucan or another antifungal after the antibiotics? Maybe you should, it might help your symptoms if nothing else is found.
tcnj mom,

Yes, I definitely think I do have a yeast problem going on as well as the adrenal problems, or maybe the yeast is the causative factor, I'm not sure. Either way, I'm still awaiting testing, and if nothing is found, I'm going to work closely with the WONDERFUL naturopath that I've found to get control of the yeast problem. I never did take diflucan or an antifungal after all of those antibiotics, but I was taking acidophilus and other probiotics at the time. I think the probiotics kept everything under control for a while, but I think the massive antibiotics along with the severe stress I was under caused me to get the full-blown Candidiasis. I'm glad more people are starting to find out about this whole yeast issue, and I'm glad you mentioned it because I have HEARD of adrenal problems being related to yeast, but have never personally talked to anyone who has gone through that.
Thanks,
Katalina:)
Hi Sadie & Lisa.....My brother 2 years ago had black out spells and was hospitalized for almost 2 months. Everytime he stood up he would pass out. He had a tilt table test which showed the worst positive results the cardiologist and neurologist had ever seen. They diagnosed him with a form of POTS that they had never seen. He was released on lopressor and changed to topranol and functions pretty well until Saturday. At that time he presented with uncontrollable tremors involving all 4 extremities and his head and neck violently twitching for over 3 hours. He cannot walk....my SIL has to carry him on her back otherwise he'll black out. He has taken his max of 400mg of topranol which barely controls his headache and twitching. A cardiologist is presently working him up for pheochromocytoma on a 24 hour urine test.....my sister in law just called and said that his tremors are worstening since he can't take the topranol while on the urine test and she is calling an ambulance. I see that there are some here that have an understanding of this disease and any help would be appreciated. thanks......Goody
Katalina, I'm glad you were taking acidophillus and probiotics, they should have at least kept the problem to a minimum.

About five years prior to be diagnosed with autoimmune Addison's Disease, I had a gangrene appendix removed. I don't know if gangrene is the same as yeast (I always thought gangrene was like a mold but I don't know for sure), but I have always assumed there is a connection to my diagnosis, however I cannot get a doctor to confirm that. But someone else that I know was diagnosed after having a yeast problem in his sinuses. And his doctor told him that he believes that all autoimmune processes begin with a yeast condition.

I hope the medical profession is finally putting the pieces of this puzzle together.

Good luck with your testing.
How does everyone deal with having POTS? I have Addison's Disease, but recently when I went into hospital I noticed that my pulse was in the 70's sitting, and it jumped as high as 147bpm just by me standing up. I have a weird pressure behind my eye, and numbness and tingling in my left hand, tremors in right and I keep getting cramps in my back and feet. I could stand up for 13 hours a few weeks ago, and now I stand for 5 minutes and have to sit down again? I developed pneumonia 8 weeks ago, so could POTS be from that? Also, is POTS permanent? I refuse to let myself sleep and do nothing, because I figure that If I do a lot now, when I come out of this I will be much better.
tcnj mom,

A gangrene appendix!!? Wow. I've never heard of anything like that happening. How scary. How did you get diagnosed with that and did they ever tell you exactly what it was caused by? I'm assuming that you probably had some sort of pain or discomfort in the region of your appendix and that they gave you an x-ray, but I'd love to know the story of how you discovered you had something like that. I have also heard that all autoimmune processes begin with a yeast connection.
~Katalina
Lisa,
Thanks so much for explaining your story to me. Reading your background on POTS and dizziness and your history in general was eerie...it was almost EXACTLY like mine. I too got sick in 2003, at the age of almost 29, and my first sign of illness was a major vertigo attack. I too searched for answers from multiple neurologists before finally being referred to the Mayo Clinic, where my diagnosis of POTS was re-confirmed (it had been originally diagnosed at Johns Hopkins, which is here in Maryland where I now live) and Mayo additionally found I have Celiac Disease and Colitis, both intestinal diseases. I still don't know if struggling against those diseases is what brought on POTS, or if it was a very bad virus I had around the same time.

I think Addison's has been ruled out in my case, but I will double check that with my doctor. I am currently taking Pindolol 5 mg. daily, plus Aciphex for the stomach stuff. I'm still not able to function anywhere near normal, though. My pulse rate's down now, but I just don't feel well in general. I have lower back pain and tightness that makes it impossible for me to be on my feet for very long, and a 2 hour day feels like a 12 hour day. I'm only 31 so I can't understand how it is I feel this way.

Which meds are you trying, and how are you feeling in general these days? Any improvements? It's nice to finally hear from someone who also has POTS. I've always suspected I have other things as well, but that remains to be seen. Take care,
Gillian
Katalina, I had had severe pain for several hours and when I went to the doc, he sent me right to the hospital. I don't remember what tests they might have done, this was over 30 years ago, but they said I had acute appendicitis and scheduled me for an emergency appendectomy. After the surgery is when they told me it had been gangrene and wrapped partially around my uterus. I was able to have a child so apparently no uterine damage at that time, but once the autoimmune process got going, I lost the adrenals, thyroid and ovaries.





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