friday Posted October 18, 2007 Report Share Posted October 18, 2007 How do you deal with doctors who won't listen or believe your problems?Like my temp. My normal temp is 96.6 so If i get a fever of 99.8 I feel pretty bad. My face even gets red. Yet when I try to tell a doctor I had a fever. I always know it' s coming. "How high was it.?..um 99 .OH that's not a fever...Yeah but my normal temp is 96.6.yes but that's not a fever. normal temperatures can fluctuate and be a little over 98.8.Yes but my normal temp is 96.6..and on and on. They just can't accept that since my temp is low, a 99.8 is equal to about 101. ANd I feel really bad.I dont' understand why it is so hard to get through to them.I have the same problem with my salt levels. I need to know if they're ea little abnormal. Sometimes doctors will tell you everything's normal, after taking blood tests. They ignore little lows and highs. I tell them I need to know the numbers because i have trouble with keeping my electrolytes up. ANd they say oh well there's always little fluctuation's that's okay. And I then have to try to explain to them, if i can get a word in edgewise, how important it is to me that these levels be normal. They don't understand how it effects me because their minds see everyone as a being normal. Just like the temps. This is what's normal.-98.6 Why is it so hard for them to except that some of us aren't normal. It makes it so hard . ANd when I try to explain it they don't' want to hear it. They think it' s just overreaction or well who knows. It drives me up the wall.I also have this trouble with my iron anemia. I feel it way before the hemoglobin shows it. They took me off my iron tables cause they said I didn't have anemia. I said it' s becuase i 'm taking iron tabs but of course they said I didn't need them so a few months later I feel weak and ask for the test. Of course hemoglobin shows up fine. Then I keep feeling weaker so finally i got a doctor after twisting his arm to do ferritin and saturation levels. They came out so low he had me back on iron pills immediately. Yet before that he thought I was fine. Don't understand this.So maybe it isn't' normal for iron to effect people in that way. Maybe most people don't' feel it until the Hemoglobin clearly shows it..but I feel it way before. Why is it so hard to accept that some patients are different.I'm really nervous now because my GP has left. I have to get a new one.Not that he was perfect but over the years he's actually saw the weird things my body has gone through.LOl And so we had some kind of an understanding. He also knew my CFS doctor and had respect for him so that helped. If my CFS doctor said something he'd consider it. But now I have to go through it all over again.I'm so sick of this! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted October 18, 2007 Report Share Posted October 18, 2007 I HEAR YOU!!!It is horrible when we are looked at as insincere!As if we have nothing better to do with our time and energy than to report inaccurate facts about the body we dwell in!!!Take a deep breath and try to get the energy to find better medical care.You did nothing wrong and I commend you for speaking up!Doctors need to learn how to trust that we "know" our bodies!hugs to you,tearose Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted October 18, 2007 Report Share Posted October 18, 2007 I think that since dysautonomia is so unknown the doctors don't really realize what little crazy things out bodies do! Its so frustrating when you bring something up and they just think that your a wimp and complaining for the sake of complaining. As for what to do, I would just start off not saying that you had a fever since you know what they are going to say...make them listen, challenge the things they say to you...dont let them just get away with it. For me you almost have to be "as smart as the doctor" and i actually have gotten pretty good as he has me labled as of now as a 3rd year medical student. He has also told me i need to get a life, but there are no worries as i am very busy and indeed have a social life, even though i am a big nerd. But as i was saying dont start out saying i have a fever, say over the past few years i have monitored my temperature and for me normal is around 96, not the average 98, so the other day when i took my temp it was 99 and though to someone with a normal temp of 98 that wouldnt be bad at all for me that is like more to the degree or 101 to the "normal". Perhaps if you execute things differently it will work better in your favor.Good luck, I know how frustrating it is not being understood!!!! Hugs,Mary Quote Link to comment Share on other sites More sharing options...
thejohnsongang Posted October 18, 2007 Report Share Posted October 18, 2007 You could also try what I have done. I have always had problems with a high red cell count. But depending on what lab did the test is what their range of normal is. They differ to about 5 points. I always asked my doctor for a copy of all of my labs, then I could follow them by what my range should be. As for your anemia, I wouldn't wait for the doctors to start me on iron if you truly know that it is the low iron that is making you feel bad. I would start back on it myself and then when you go back to the doctors tell him why and and that you and him can manage it together. You need to take control of your care and with some doctors you have to almost demand certain things be done. If I hadn't pushed my doctors over and over I would still be laying around the house crying and feeling terrible. I have fought every step of the way to get a dx and will continue to do so until I feel normal again...if I can even remember what that is As for the temp I would keep a daily log of your temp with dates and times and then you can prove to him what normal is for you. You can also push the fact that you know your body better than he does and that he needs to be more aggressive with your treatment. With our disorders...we have to learn to fight, fight, fight and eventually you will find a good doctor that believes in you and your disorder and be more willing to work with you. Until then keep your nose to the grindstone and don't give up. This is what we are all here for. I've learned more from my own research than I ever did from any doctor until my daughter started seeing a CFS specialist and he was a god send. He got it all.Good luck in your search for the answers you need and all the while we will be here to help.Nolie Quote Link to comment Share on other sites More sharing options...
Ernie Posted October 19, 2007 Report Share Posted October 19, 2007 Hi,I find a doctor that believes me then I stick with him. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted October 19, 2007 Report Share Posted October 19, 2007 so sorry for all of your frustration. not sure if any of it will be helpful, but i just wanted to let you know that i did (finally) respond to your questions under my fever post.hang in there. i hope you get some answers and/or feel better soon... melissa Quote Link to comment Share on other sites More sharing options...
preacherswife Posted October 20, 2007 Report Share Posted October 20, 2007 I hear ya! I'm a 97.9 girl. Yeah, I know, not too far from 98.6, but still. If I am hitting 98.6, I don't really feel well. If I'm in the 99s, I'm sick. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted October 20, 2007 Report Share Posted October 20, 2007 I am also a way below normal gal...or used to be...only in the last couple of years do I have "Normal 98.6 temp but I am still feeling very unwell.since this whole ans deal is BODY TEMPERATURE DYSREGULATION, you think docs would get it!!Hope you feel better, after your kvetching and get some understanding. Quote Link to comment Share on other sites More sharing options...
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