puppylove Posted November 16, 2012 Report Share Posted November 16, 2012 I have been having more/ new symptoms like really bad swelling and water retention so my new cardiologist thinks there is something going on besides POTS and we have to figure it out. I have been getting even more tests done, especially bloodwork. I never used to look at the results myself but people on here said I should get a copy for myself and I have. Three times so far the different doctors have called and said my tests were normal and when we got copies they showed abnormal things. One of them showed high monocytes, one showed my kidney was in the wrong spot, and a third one showed something wrong with my thyroid which we are looking into currently. I don't get why they don't tell me this stuff? Even if it is pretty insignificant it could still be a clue to finding out what's wrong with me. Has this happened to anyone else? Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 16, 2012 Report Share Posted November 16, 2012 I wish I could say that this is unusual but I find this continually. That's why I get a copy of all labs and diagnostics and make a list of questions to grill the prescribing doctor as well as at least two others (just to make sure I get the same answers) . I am also amazed when I see the official notes I often wonder if the doctor and I were in the same appt because often the notes say things that we never discussed or contain misinformation. It's astonishing. The one doctor (who's my favorite) dictates his notes into his recorder while your sitting with him so we can both clarify and agree on the information that goes into the record. Not that he wants my medical opinion in there, but things like new symptoms I describe that he may need clarification on. There are never any surprises in his records. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted November 16, 2012 Report Share Posted November 16, 2012 It depends upon how "off" the results are. The "normal" ranges for most test results are compiled from average ranges of results on "normal" people. Dysautonomia really skews "normal" results. This is particularly true with thyroid functioning in women. Studies are now showing that the "normal" range for thyroid function tests are not accurate for most women - I have a friend that is terribly ill with thyroid dysfunction despite having a low "normal" level. You also have to look at the whole picture. Is the test result a random finding? I freaked out when I had a platelet level that was considered in the range of "thrombocytopenia" requiring emergent intervention - until I realized that plasmapharesis will cause random low platelet counts. Your physician should be willing to explain random readings and what each test means in relationship to your physiology and disease. Quote Link to comment Share on other sites More sharing options...
southbel Posted November 16, 2012 Report Share Posted November 16, 2012 I have had this way too many times. Just recently I had a pretty bad issue with this in the ER. Got a CT scan because my tachy causes leg pain and the ER was thinking blood clot. CT scan said it showed bilateral pulmonary emboli. Of course, now I'm pretty worried. Doctor comes over and says, you're fine, go on home. Do I get an explanation? Nope. Do I go home feeling confused and even a little scared? Yep. If he had taken the time to explain to me that a negative D-Dimer test ruled out the emboli even with the CT findings, perhaps I wouldn't have left so unsatisfied and upset. Nonetheless, my GP felt this still wasn't enough and ordered more tests just to be sure. I think our doctors owe us more, whether that means paying better attention, giving better explanations, or telling us more details. Quote Link to comment Share on other sites More sharing options...
kitt Posted November 17, 2012 Report Share Posted November 17, 2012 . Quote Link to comment Share on other sites More sharing options...
issie Posted November 17, 2012 Report Share Posted November 17, 2012 Yeah, more then once. With our issues we almost have to become doctors ourselves. As one thing that may seem irrelevant may be the key piece of the puzzle to piece together something that may be very significant. Even if something comes back within a normal range ---if there is a significant difference (drop, rise) from previous testing this may indicate some turn that needs looking into. If we pay close attention to these markers we might can prevent possible damage later ---when markers show up very abnormal. If we can get on top of things before the damage is done --we will be much more likely to prevent unrepairable damage. At the very least --we can support whatever may be showing as a weakness in our bodies.Issie Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted November 17, 2012 Report Share Posted November 17, 2012 I've had that. I guess I've found that I have to be in a position to really know how to fix the problem medically and get the doctor to treat based on them for the precise results to really "matter" for medical purposes. At least one thing I was never told was quite appalling and did tell me a lot -- when I found out what people with the same results had disease-wise. But the results had absolutely no meaning to the doctor who ordered the test nor subsequent ones. All I can think is that their medical training was a disaster (because yes, you would need experience to interpret it). I have wondered for years why the test was ordered for me and why they ever measure it for anyone. And yes, I sometimes really do wonder if those tilt tables are used for ping pong in off hours and why they even have them... considering some of the abnormal results which result in no treatment which you see on this forum.It happened to me today. I saw part of the record which was made as I was leaving the office. I was going to ask the assistant to ask the doctor to talk to me about it -- until she told me she sees the same finding all the time. Then it mattered to me as little as it had apparently mattered to the doctor. (And I got what I needed at the appointment apart from that). But really, for the one that did matter, I had assumed even after getting the result that I wasn't told because they saw it a lot. I don't think that now (and if they are seeing it a lot and not doing anything about it, a lot of people are suffering immeasurably). Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 17, 2012 Report Share Posted November 17, 2012 Speaking of TTT, that was actually one of my misdiagnosed tests. On my 1st TTT, the nurses administering the tests kept calling the "administering cardiologist into the room because at the 3 minute mark my HR jumped to 145 and stayed there for the whole 45 minutes. The cardio told me at the end of the test to increase my salt and fluid and drink at least one Gatorade everyday and to set up a follow up with my cardio for the results within 2 weeks. I cross referenced tachycardia and TTT so I had found POTS. When I got to my cardio, she said the report stated there were no positive findings. WHAT!?! So I asked her to get the read out and review it for POTS and explained the tachycardia that had occurred during the whole test. A week later we were meeting again and I was diagnosed with POTS officially. What really struck me was the administering cardio knew something was wrong or he wouldn't have told me to salt and fluid load. Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted April 23, 2013 Report Share Posted April 23, 2013 Yes. This drives me nuts because I don't feel like I can get my head around everything in order to interpret it properly. A few minutes to explain things would work wonders. I recently got my medical record from the hospital and was surprised by some of what I found. Other bits didn't make any sense to me at all. Wish I could access my old brain. I miss it. Quote Link to comment Share on other sites More sharing options...
songcanary Posted April 23, 2013 Report Share Posted April 23, 2013 Yes Puppy, it has happened to me. Especially with the thyroid. That caused me terrible symptoms before I found out on my own research that I should seek a second opinion. It was actually the third opinion that treated me and I still see that doctor and he is the most helpful and caring. You are so young and so smart. If I had known at your age what you do, I might have avoided dysautonomia altogether. The best advice is to get a hard copy of your test results, research online and get opinions from doctors who truly care about patients. That was the hardest part for me but it can be done. Keep shopping until you get a good feeling about the doctor. They are out there.Best to you as always,Marsha Quote Link to comment Share on other sites More sharing options...
Joann Posted April 23, 2013 Report Share Posted April 23, 2013 yes get your copies. I have had the same results on one test interpreted differently by three different doctors. I also had to request my records to take with me to Cleveland and read through some of the doctors notes. There were so many that were wrong. Things that i hadn't said, one said my mom had something that my dad had, one made it sound like I was living with my parents, when I am married and have a child. And many symptoms were just plain wrong. I agree with Katybug, it is like they were talking to an entirely different person! So I would ask for copies and then ask question and do your own research on results.I am sure there are some great doctors out there, but it is your life and I am learning we need to depend on ourselves and not blindly on them. Quote Link to comment Share on other sites More sharing options...
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