As a friend said, I think there are too many cooks in the kitchen. I am up to my eyeballs in doctors, and nobody knows nothin' 'bout nothin'!
The neuro saw that my eyes did not dialate, did the orthostatic (sp?) test - lay down, sit up, stand up while taking bp - where nothing changed, and ran a few other tests for autonomic neuropathy. All negative. He gave me meds for migraines, which I plan to start taking at some point.
The cardiologist spent MAYBE five minutes with me and they did a quick EKG, I had the echo Monday, are scheduling a tilt-table test, and will have me on a heart monitor for a MONTH.
I spoke with my endo over the phone - my D level has come up quite a bit, so no worries about malabsorption (YAY!). I told him how awful I was feeling, that that news was great but killed my recent theory that maybe my new meds weren't being absorbed, and he had me go to my GP Friday for a general exam. He did compliment me on being a good patient, very logical and well-reasoned with my complaints, but said I was a "diagnostic challenge". I don't want to be one of those.
The GP performed 2 neuro tests the neuro didn't (which makes me raise my eyebrows), one of which I FLUNKED. So I called the neuro's office and let them know; I'll see what the neuro wants to do. During a repeat orthostatic test, where they left me for five minutes between changing positions (because apparently that's how you are supposed to do it) my bp again remained the same, but my heart went from 94 to 120 as soon as I sat up. I called the cardio's office to let them know that.
My GP is also going to forward all this to the docs and request records from them. Now, I've seen New GP all of 3 times. He commented that I needed to start exercising. I said get me better and we'll talk. My husband joined in and later regretted it.
I am a drunk woman. I am dizzy and nauseous, with bp and heart-rate going crazy. I am too fatigued to move half the time, but I force myself to walk around the house as much as possible (doing the granny shuffle). My legs have started hurting, which doesn't help.
I see the endo Tuesday, where I will tell him about the GP visit and my concerns that neither specialist did enough.
Now I have a friend in my ear having a holy cow that I need to go to Little Rock, and Renny, I was wrong, apparently there are endos that specialize in AI, they just see other types of patients as well. They have an endo who does. My friend thinks these guys are just playing games and guessing, and I need to see someone who "knows". We are trying to schedule a phone consult for next week, so I can talk to this doc and see if he knows anything more or can do anything more than the docs here are doing. Otherwise I'm not going to waste my time. He is very vehement, though, but I know he means well. Also thinks I need to be in the hospital.
I am sinking into a crazy depression, where I don't even want to talk on the phone with my friends half the time. I feel like there is no light at the end of this tunnel. And I have a gut feeling they are going to find this time what they found six years ago via the cardio - nothing - and in a month, I'm going to be just as bad or worse off than I am now.
We (hubby, close friend, and I) have discussed my being put in the hospital until they figure this out. It is really not safe for me to be home alone; if I were to fall, it could be lethal. And with a heart-rate that likes to jump all the way up to 130 for no apparent reason, a bp that likes to drop for the same reason, I'm an accident waiting to happen.
I feel like nothing more than a lump of jello on the couch, a burden, and I just want to cry. Why won't anybody do anything? And if you keep asking me about chest pains and other signs of a heart attack, don't you think I need to be more closely monitored? I hate hospitals, and I'm ready to go check in - NOW. At least they could do all the tests in a short period, have results quickly, consult with one another, and move down a different route if the current one isn't working. Because at this point, like with the neuro, his idea didn't pan out, but apparently he didn't do a full physical neuro exam (GP did another that I passed). Now I may have to go back to him!
I also plan to tell my endo this - I would NEVER do anything to myself, but sometimes I pray at night I won't wake up the next day.
I can't even do little things anymore, like my one thing of trying to keep my den clean, or do one load of laundry a day. Nothing. Jello.
:( :( :( Hang in there lilmiss. I am so sorry things suck so bad right now. YOU MUST get in with a specialist. Even if you have to go spend the night somewhere else to work with this specialist, you must. It does sound like the docs are just guessing and that is not ok. I am really worried about you. I am sorry it took me so long to respond.. we had no power here in NY for the past day or so from the storms. I hope today is a better day. I really think you need to see that specialist right now. It is soo hard to feel anything but horrifically depressed when you feel so sick. I really hope they can get your symptoms under control so you can start to live. I have confidence that that will happen. You may want to go to the hospital, for safety's sake.. at least then you can be monitored and taken care of. I know hospitals suck, but I hope you can just bite the bullet and go and get the care you need until you can get in with the specialist. I am so sorry this sucks so much., Please keep taking deep breaths. I hope today is better than yesterday.
Yes, the endo and I are going to have a "Come to Jesus" meeting Tuesday. I am going to calmly explain to him that I think these specialists are slacking, that I hate hospitals and fanticize about being in one, think I should be in one, discuss the possible second opinion...the whole nine yards. I am also going to be very blunt with him about my mental status. The way these guys are acting is causing me more stress, which is the worst thing for me at this point. If he can't get me in based on symptoms, which would surprise me, he might could get me on the psych ward!
I started feeling pretty short of breath earlier, and sure enough, heart was 114. I can tell when it goes over 110. Guess what I was doing? Sitting and chatting with a girlfriend on the phone. Such stress...NOT!
Is the heart rate part of Addison's? I cant believe the cardio didnt do more about it to get it under control more quickly. These docs sound like quacks. Not that I have had the best luck with docs lol. But seriously, you need a specialist. This is too much, too scary. Hang in there woman. I hope you can sleep tonight.
It's kind of complicated. AI patients can also be lacking in a hormone called aldosterone, which controls bp, sodium, all that junk. Although I tested normal, I exhibited the symptoms, so my endo figured my number was fluxuating and just happened to be "normal" at the time of the test. He put me on the replacement hormone, and my problems went away. All of them, within 3 days. (Dropping bp, dizziness, etc.)
I was fine for two months, then I dropped that day two weeks ago. He ended up doubling my dose of florinef (the aldosterone replacement) which helped a tad, but we think it was a band-aid. That's not the real problem here.
I had the high heart rate during pregnancy, and the endo said it was likely AI (six years ago!). Low bp, or bp flux on the low end, will cause the heart to beat faster to try and keep up or "fix" the problem.
The cardio said that although my bp has not gone below 90/60 again, that we know of, doesn't mean much. Some people are fine at that level, some need 110/80 to feel well, etc. I am currently having bp fluxes between those numbers, so it looks like I'm still fluxing on the bottom end, which would exlain the heart, at least to an extent. The real question is why my bp didn't change, but my heart rate did, during the orthostatic testing. Is the florinef preventing my bp from doing what it would otherwise do? Or is it just my heart? And if so, WTH is causing it?
The sudden onset bugs the heck out of me. You don't have sudden onset heart problems, unless you have a heart-attack or something. (And I don't think that's what this is, so don't think that's where my head is.)
It is too much and too scary. I can make it to Tuesday, but I am going to INSIST something be done then and there. If you really can't do anything,, put me in the hospital. I'm DONE! A close girlfriend called a friend of hers who has been a lifelong cardio patient, and she explained they can't just treat my symptoms without definitive info, because if they guessed wrong, they could induce a heart attack. But with my issues, he could have left me hooked up to the ekg for ten minutes, while sitting and standing and stuff. Hmmm...there's a thought. Then I realized today - I saw the cardio for such a short time, I couldn't pick him out of a lineup. I can't even remember his hair color - not even light or dark. That's how much time he spent with me.
I don't really know enough about AI to comment about that, but I do know a thing or two about depression. Your health has taken a nose drive, you're not in control of it, and doctors haven't been able to figure out how to deal with it. I'd be surprised if you weren't depressed. To me your reactions to what's going on are totally normal and to be expected.
I think my doctor has come to expect me to be "the weird one." Yay me, not only do I have seasonal depression, but I also have light sensitivity too. Oh how I love the inventor of the dimmer switch. Thankfully I've found a light box that isn't very blue - a lot of them are, and blue light plus light sensitivity equals pain.
Just to make it even better, the SSRI (serotonin) antidepressants that are the first line for dealing with depression/seasonal depression don't do squat for me. You might as well just give me a sugar pill for all that it does. The only pill that ever touched my seasonal depression is Wellbutrin (dopamine) but I had to take a really small dose of it or I'd have major insomnia problems, and I had to be careful how long I took it as my ulcerative colitis hates it.
So for about five months of the year I had to take a pill that would aggravate my colitis just so that I could begin to function. There were times without it where I'd sit in a darkened room and stare at the wall for hours.
I know your sleeping problem with Wellbutrin. The endo gave it to me 3x a day, so I took it morning, noon, and night. The shrink said, take it all before 2pm if you want to sleep! Oh...
Well, you make me feel a little better, but I don't think you're quite as screwed up as I am. Or maybe you are. It sucks they can't find something to treat your symptoms that doesn't aggrevate everything else. THe neuro had a fun time finding a medication for my new migraines that doesn't have the potential side effect of lowering bp. When I asked him about insomnia, he said, "Call your psychiatrist". I think he didn't want to search that long again! LOL Felt kind of bad for him then.
I don't feel bad for him anymore though. He didn't do two basic neuro physical exams that my freaking GP did (without knowing what the neuro had/hadn't done) and I flunked one. Now I think the neuro can go spend some quality time in hell, or at least he can be forced to have double the hours of continuing professional education this year - in subjects of my choice.
You don't have to know about AI at all. I just need a place to boohoo sometimes. And I do still have GI problems, they just aren't bothering me much at the moment! They are just a symptom of the AI, and now that the vit D has come up, they don't suspect Celiac anymore. Thank GOD!! So I can eat my Little Debbies while I whine and my heart implodes. My own silver lining.
Oh I'm sure you're currently more screwed up medically than I am - but I wanted you to know that you're not alone on that one. :)
Obviously you had a better time with Wellbutrin and insomnia than I did - I couldn't take more than a 100mg pill in the morning or I wouldn't be able to get to sleep at night. You'd think that little wouldn't do anything for my seasonal depression but it did.
I tried a few times to get coverage for a light box but nooo.... It wasn't until I got disability coverage (in Canada, so different setup) that I could afford to buy one. I did the math and for the two years at a time that I get prescription coverage, it would cost about as much for the Wellbutrin as it would to buy the light - which lasts a lot longer than two years. You'd think they'd want to save money and buy me the light.
I got it last winter and this winter I also got a dawn simulator. Between those two I haven't had to take any Wellbutrin. Yay me. I so like not having to take any more pills than I already do, mostly due to having something like a chemical sensitivity to most of them. I've talked to my GP about it so she's really careful if she has to prescribe me anything. Go figure that if I go to see any specialist and/or get any testing done, I make sure to follow up on it with her - I like to have one doctor in charge of the three ring circus and she's it.
If you have any trouble with diarrhea let me know and I can suggest some foods that should help.
LOL, I won't get into a contest over who is more medically screwed up! It's not fair to everyone else. j/k There are plenty of people out there with bigger problems than I have. And I think when they figure out this heart/bp thing, it's going to be something fairly small. I'm not expecting a need for a new heart or anything. I think it's going to be completely unrelated to the heart, that the heart rate/bp are just symptoms, and someone really weird like my eye doctor is going to figure it out (too many Mystery Diagnosis episodes).
If I hadn't had insomnia problems before the wellbutrin, I would quit taking it. But I'm no worse off now than I was then, so I figure I might as well be a little less depressed and up until 4am than super depressed at 4am. Besides, I sleep fine and for at least 8 hours once I'm asleep. It's just getting there that is the problem. But the concensus around here is that it is depression.
I've had diarrhea for five years, and I'm happy to say for the most part, the AI treatment has stopped it. When I do have it, I usually follow the baby BRAT diet (bananas, rice, applesauce, toast), or something similar. I have to be careful about immodium, because it can mess me up for a week. When I had some problems a few weeks ago, that we now think was a virus, I gave in a couple of times. The medicine my GI doc put me on a few years ago worked quite well (Pamine), without messing me up, but I rarely take it anymore. In fact, I'm about to take it off my Master List of Medications. And yes, it needs to be capitalized. It's long...
My endo is in charge of my three-ring circus. When you have something like Addison's, the doc who treats that becomes the boss. The GP is used for diagnosing upper resp infections and the like, occassionally for just ruling out general stuff like we did Friday, but he reports to the endo. I honestly think if God Himself came down from Heaven and examined me, he'd have to send my endo a report! ;)
So when the endo says I'm a diagnostic challenge, and I've figured out the two docs I've just seen are complete morons, I wanna cry!!!!!
It sounds like the come to jesus meeting needs to really happen.
I also wonder about your endos bed side manner to be saying you are a diagnositic challenge? Does that mean he is just waiting for something to light up so he can say ahhh haa or is he really looking into it?
I agree that your reactions seem very normal and I would be amazed awe inspired if you were not depressed to some point.
Is it crazy to ASK a doctor to hospitalize you? I mean, I hate them just as much or probably more than most people, because I have spent so much time in them with ill/dying relatives, and I have baggage about certain relatives who did everything possible to get IN the hospital just for attention, so this is tough for me.
But the endo said a couple of weeks ago he didn't think I needed to be in the hospital. However, things have gotten quite a bit worse since then, and my mental condition has gone with it.
I'm thinking the hospital will allow them to do all the testing they want in a short period, get results quickly, then if nothing shows, they can go down a different path. It will also put me somewhere I'm not in danger of getting hurt while home alone.
My husband is being a butthead, going from hot to cold and back again on this, so it looks like I'm going to have to make the decision on whether to push, but of course it comes down to what the endo wants to do. My husband is now saying they may not find anything in a few days, and I'm getting my hopes up. Uh, no, I'm just thinking we can eliminate stuff faster! Instead of waiting a month to decide it's not my heart, we could find out in a couple of days! They might still have to release me in my current condition, but they would have narrowed it down significantly.
Mags, my endo actually has an awesome bedside manner. Better than any doc I've ever seen. But I agree - not the words I wanted to hear, but at least he was honest I guess.
Truth: MY opinion is to go to the hospital. I would ask the endo to please put you in the hospital so that you can speed up the process of testing and so you can feel safe. Tell him you are scared and feeling terrible and needing a higher level of care. I think that the amount of thought you have put into this possible hospital visit CONFIRMS that you need to be in the hospital right now. I really believe that. Good luck lilmiss. I am hoping and wishing for your well-being!
Well, I had a major freaky scary episode tonight, with which I will not bore you, but I declined to go to the er because frankly I'm an idiot. In hindsight, I probably should have. But I'd rather be admitted through my endo, with him in charge, and the appointment is tomorrow.
Trey is totally with me now. I doubt I'll even have to ask, but at this point, I'll BEG. (I'm expecting a lecture from the doc about not going to the er tonight. well, uh, I hate er's. That's all I've got.)
I'll try to update. If he doesn't put me in, I swear I'll go to the padded room! ;)
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