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Update And Questions


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Hi all!

I have been wanting to post for a couple of days, but my concentration hasn't really been there... Todays a bit better, so we shall see if I make any sense... :P

I had my second dexamethasone suppresion test to test my cortisol levels. First time it was way high, and somehow this time it was "normal". Now, she really won't believe me that I took the dexamethasone the first time! :P So, I am not sure why there would have been such a difference? :blink: So, for now I guess no more looking at anything down this route.

I also had the glucose tolerance test and after WAY to many phone calls and frustration they more or less added checking the insulin levels as well. From what she said over the phone, all the numbers were really quite good. So, I do not feel that there are any problems there. So, thats good! :)

I have had a couple of other recent appmts. including Toledo and my GP. Nothing has really changed, nothing has been figured out etc. It is frustrating! But, I do still have to get a hip x-ray, where my hips have been VERY painful in the joint and through my quads. This is on top on the Trochanteric Bursitis and sciatica... So, it is getting old fast! :)

Oh, I guess I also had forgotten to update: THANKS to many people on the board (sorry can't remember everyone), including Melissa (Sunfish) referral suggestion I did get my neurologist who didn't know what to do with me to refer me to Dr. Shields at the Cleveland Clinic. My first appmt is in Jan! Thanks SO much for ya'lls help!!!!! :) Being able to get somewhere with that really helped me out!!! THANKS!!!!

I also have started on Cymbalta (about a week). Overall, very few side effects especially for me! Sleep has been a little off, but there is always that adjustment period. So, I am off the Wellbutrin and on a lower dose of the Zoloft. Of all the meds I have tried in the past few months this has been the one I have seen the quickest and most significant positive changes. Overall, it is actually hard to pin down what it is improving... I guess more energy (at times), better cognitive skills, and seems to be a bit better control of autonomic symptoms (heat tolerance etc). I am still trying to see where this is leading... But, am slightly optimistic! :)

This is already so long and I kinda forgot my questions, so I think I will leave it at this for now! B)

I REALLY do want to give THANKS to everyone on this board that works so hard, and has given me many positive thoughts and suggestions!!!! Ya'll have helped a ton!!! :)

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Guest Sandy Sims

An idea?

Please get copies of these tests.

I did this to get ready to go to Cleveland Clinic.


It seems, for some reason, slightly abnormal readings aren't related to patients. The thinking is "its close enough." And for many that "may" be true--for others it's not. Best to know--will help docs have ideas as to where to start with further testing.

Also, for some reason, it seems than many of my tests weren't looked at period. Were VERY abnormal and I wasn't told???? Seems one doc I had simply decided I was nuts and quit looking at them????

Do this--please--it's worth the effort.

Hope this helps!



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I had to laugh when I was reading your post. I have been hypokalemic on my labs for 2 years now and I was getting copies of the labs myself. The doctors would say "everything is normal" and I would say "no, this is LOW." For two years, this goes on and no doctor really would take it seriously. I did get them to test for hypokalemic periodic paralysis but I could tell they were just humoring me and after that came back negative, they ignored it again. Finally, I was inpatient in the hospital and they get the same low reading that's been coming up for years and a doc there goes OH MY this is too low! IT ALL DEPENDS WHO IS LOOKING AT THE TEST RESULT AND WHAT THEY CONSIDER TO BE "GOOD ENOUGH." Once the hospital said it was too low, suddenly my regular docs take an interest in it. After 2 years of ignoring my pleas to pay attention to it.

You are so right. It has to be a lesson to us all to always get copies of our own test results and double-check to see if the are borderline. Sometimes you have to pursue these things on your own!

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Have you always had the hypokalemia? How high is your sodium intake? One tends to regulate the other.

I agree with "it all depends on who is looking at the test!" My Endo initially said that my labs were fine, but the nephrologist took one look at my labs and came close to saying a bad word before saying "that's too high!" on my sodium and serum osmolality. But then, most hospitals only see stats like ours when their patients are really sick, it's not "normal" (maybe for the rest of the world) for us to be walking around like this. Just try to explain to someone about what your HR does just standing there, I've seen lower HRs displayed on treadmills with people jogging on them!

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The odd thing about the hypokalemia is that if you wanted to explain the reading TODAY, it would be easy to explain away. I'm salt-loading and taking fludrocortisone, so those in combination could easily explain hypokalemia. However, the hypokalemia started way back when I first got sick two and a half years ago. Back then, they had no clue I had dys, so I wasn't on fludrocortisone (just started that perhaps late august this year) and I wasn't salt loading (that too was relatively recent with the addition of midodrine to my drug regime). In fact, due to growing up with a father in renal failure, I'd lived a life devoid of salt shakers and surrounded by unsalted potato chips, etc. so my salt intake was WAAAAAY below a normal US diet. I kept telling the docs that I was a vegetarian and got relatively much more potassium in my diet through fruits and veggies than a "normal" person does, yet I kept testing low over and over. They're FINALLY sending me for more testing now, but I get the feeling the specialist is just going to say "oh, it's because of the salt and fludrocortisone" and blow me off. :D

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