This really is just unbelievable to me.
I called on Thursday and got the secretary. I thought, "oh good" just the person that I've been playing phone tag with. Well sort of. To play tag you need the other person to try calling YOU back, which wasn't happening. I told her that I was trying to be as patient as one can be, but I've been waiting and calling for the past 6 weeks asking WHEN I'd get my report. 5 weeks ago I was told it would be finalized the next day and then sent out probably over the weekend. Now I call and I'm told the same thing each and every week. I want an answer NOW as to when my report will be in my hands...
She looks me up in the system. "oh..um...I guess there must have been some kind of oversight. I don't know why your report wasn't finalized". I told her that I've been told that same thing for the past 4 weeks and nothing has been done about it. "I will have the nurse call you when it is finalized". Okay so when should I expect the report to be in my hands, so that I know when to call and complain again. "I don't know" Well here it is Monday and no report, no phone call. NOTHING. What in the HELL does one have to do to get a damn report from Cleveland Clinic. This is not acceptable.
I hate to burn bridges, but I don't think I ever want to go back there. Just awful.
So...tomorrow I am calling again. I hope I get the secretary, so I can tell her that whatever it is they are doing to get the report finalized ISN'T working. I want my chart put ON TOP of the pile and it stay there until the doctor signs off on it. Period. If this doesn't work, then I'll have to call the cleveland clinic ombudsman to step in for me.
Showing posts with label cleveland clinic. Show all posts
Showing posts with label cleveland clinic. Show all posts
Monday, July 19, 2010
Monday, July 12, 2010
Still Not Doing Well
I was really hoping to see some improvement, but I am really bad...again. I felt decent for like 3 days as far as mood goes. But my heart has just been terrible.
I made myself go to the park today to take a short walk. My heart rate was like 150 as we were walking around, but I just made myself continue on. Suddenly it felt like someone was pushing on my throat and I told my husband I needed to sit down like NOW. We made our way to a picnic table and my HR would not go down even while sitting. I laid down on the table and immediately my heart rate went down to 70. /sigh
I felt completely out of my mind like I was watching myself watch myself.
Cleveland Clinic can kiss my ass. The autonomic department is incompetent and tomorrow they will be getting a very mean call from me. I have had enough of waiting around like a chicken with my head cut off. I want some freakin' answers as to where my report is at. They never bothered to call me back last week and now the bitch has to come out to get anything done. I'm going to tell the woman that I want a DATE that my report will be in my hands. Every single day after that report isn't in my hands, I will be calling them. Every single day until it IS in my hand.
My eye floaters/bright things are all back, so this has to be related to me feeling terrible.
I made myself go to the park today to take a short walk. My heart rate was like 150 as we were walking around, but I just made myself continue on. Suddenly it felt like someone was pushing on my throat and I told my husband I needed to sit down like NOW. We made our way to a picnic table and my HR would not go down even while sitting. I laid down on the table and immediately my heart rate went down to 70. /sigh
I felt completely out of my mind like I was watching myself watch myself.
Cleveland Clinic can kiss my ass. The autonomic department is incompetent and tomorrow they will be getting a very mean call from me. I have had enough of waiting around like a chicken with my head cut off. I want some freakin' answers as to where my report is at. They never bothered to call me back last week and now the bitch has to come out to get anything done. I'm going to tell the woman that I want a DATE that my report will be in my hands. Every single day after that report isn't in my hands, I will be calling them. Every single day until it IS in my hand.
My eye floaters/bright things are all back, so this has to be related to me feeling terrible.
Saturday, June 26, 2010
Too Much Norepinephrine!
I got another call from Cleveland Clinic today. It was the nurse and she said she wanted to get clarification of my catecholamine results since she was not sure how to read them to me.
Supine norepinephrine was 125. She said this was within normal range.
Standing norepinephrine (10 minutes into tilt-test) was 613. That was out of range.
That's like an increase by 5X's. The nurse said that is way way too high. Normal is doubling, so around 250. The doctor says that is likely why my heart rates are soo incredibly high when I am standing, yet what doesn't make sense is why does my BP not go up? Norepinephrine increases blood pressure.
I asked her about the epinephrine and she said the doctor had nothing to say about it. So I have to keep waiting for the report in the mail until I can actually SEE the results. Who knows how long that will be...3 weeks and counting...
Supine norepinephrine was 125. She said this was within normal range.
Standing norepinephrine (10 minutes into tilt-test) was 613. That was out of range.
That's like an increase by 5X's. The nurse said that is way way too high. Normal is doubling, so around 250. The doctor says that is likely why my heart rates are soo incredibly high when I am standing, yet what doesn't make sense is why does my BP not go up? Norepinephrine increases blood pressure.
I asked her about the epinephrine and she said the doctor had nothing to say about it. So I have to keep waiting for the report in the mail until I can actually SEE the results. Who knows how long that will be...3 weeks and counting...
Friday, June 25, 2010
Preliminary Catecholamine Results
There's been some sort of hold up on my report from Cleveland Clinic...I asked the nurse about my catecholamine levels.
She said that my upright norepinephrine levels were high at 613.
She also said my epinephrine levels were below detectable limits <10.
Not sure what all that means right now and I'm not going to come to any conclusions until I see them for myself.
In crappy news, the floaters in my eyes have been terrible. I hate to even call them floaters because they are not dark spots. They are very bright bursts of lights that are either dark (on light objects) or bright (on dark objects). Very very similar to an after image. .They are very distracting and are in the center of my vision...
She said that my upright norepinephrine levels were high at 613.
She also said my epinephrine levels were below detectable limits <10.
Not sure what all that means right now and I'm not going to come to any conclusions until I see them for myself.
In crappy news, the floaters in my eyes have been terrible. I hate to even call them floaters because they are not dark spots. They are very bright bursts of lights that are either dark (on light objects) or bright (on dark objects). Very very similar to an after image. .They are very distracting and are in the center of my vision...
Friday, June 4, 2010
The Trip to Cleveland Clinic
The drive there was a lot worse than I was anticipating. I don't remember the drive to Cleveland being such a problem, but it was awful. Our GPS told us to go over a closed a bridge, make lefts where we were not able to (divided highway) and was generally wrong most of the trip.
We got there and thought I was going to have a panic attack from all the stress of trying to find the entrance to the parking garage. Things were horribly signed and the one way roads and inability to turn around ANYWAY made it extremely stressful and frustrating. They really need to make the signs larger and closer to the road so drivers can see them ! I had to pop a 15mg HC stress dose because I felt like I was going to lose it in the parking garage. That snapped me out of it!
I got in there and the nurse rubbed me the wrong way. She was a weird one. I was asked very specific questions about my "first episode", but when I tried to explain my point further, I was rudely interrupted. I brought in all of the requested labs (holter reports, ECG's, echos etc) and they didn't even seem to care! I don't know why I was even told to bring them in the first place. When I was trying to explain to the nurse my history, I felt like I was being interrogated by an enemy soldier. She was second guessing me, telling me there's no way I could possibly be feeling that way. When I told her that my heart rates hit 160 on a regular basis, she had the nerve to say "Well you walked the whole way back to the exam room, got weighed and you seemed fine". I told her very sternly that my heart was racing the ENTIRE time. Once again she just did not believe me at all. I was getting pretty ticked off the longer the nurse was in the room. She down played every single thing I would say.
Once the doctor got into the room, the exact same thing happened. She told me that everything I brought in today would need scanned into their computer system. Nothing is done on paper. Ok...so why was I told to bring all of this in? I would have happily emailed it to whoever takes care of that stuff.
The 2nd round of interrogation began. I don't know who was worse, the nurse or the doctor. For some unknown reason they focused so much attention to my "first episode" and didn't want to hear much about anything else.
My first episode was during summer band camp in 2000. I told her that it was very hot outside and I immediately felt weak, heavy, lightheaded and overheated. She said, well if this happened as soon as you walked outside, then you were probably not dehydrated. I told her yeah that's what I thought too. She asked me if I sought medical treatment or went to the ER and I told her no. I just sucked it up and went about my marching. No one else was having these problems.
Learning the marching formations, bending down and holding my arms up to play was awful. She said that it seemed pretty unlikely that I could finish 2 weeks of marching and do all of this if my symptoms were as bad as I described. I told her not to underestimate determination...LOL I'm a pretty stubborn person.
Eventually we got to more recent history where it was first discovered in 2007 that I was having periods of tachycardia. I told her no one ever took me seriously, which is ironic because THEY WEREN'T TAKING ME SERIOUSLY! I told her I was diagnosed with adrenal insufficiency, b12 deficiency, alopecia areata. She didn't even care about the AI.
After the interrogation, she listened to my heart and told me that she'd like to do a tilt test. She explained how they do it at Cleveland Clinic which was much different than what I had seen online. They first take 3 minutes of control heart rates/BP's, then tilt you for 2 minutes at 30 degrees, then tilt you for 2 minutes at 45 degrees. After that they tilt you for up to 45 minutes at 70 degrees. I told her that I wanted to have my catecholamine levels tested with this test, so she added that on.
I went back and was strapped down. They first placed the IV in my arm and I had to rest for 30 minutes to get the supine catecholamine levels. I was glad to see that they did this right. After 30 minutes, they couldn't get any blood out of my vein since I was lying down! I have no idea what they ended up doing, but it worked. I just hope the levels weren't higher than normal because I was a little freaked out that they couldn't get blood...
They took 3 minutes of control HR's/BP's and then it began. If you've never had a tilt test done, it's an experience no one can possibly explain properly to give you the sense of how miserable it feels. As they started tilting me up, I could just feel my body go..OH NO! NOT AGAIN! haha
Immediately my HR's began to climb. Once they put me up the full way to 70 degrees, it was bad. First reading was 119 and that's the lowest HR I had during the entire test. I got all the way up to around 150 and stayed there for the entire test. The nice techs/nurses doing my TTT took down any comments or symptoms I was having during the test and it is interesting. At minute 6 I told her I was having butterflies in my stomach. At minute 14, I had that same feeling. Then at minute 15, I started to sweat and felt really hot. I had them pull the sheet down off of me. In that room, it was FREEZING beforehand so obviously my body was responding to something. Minute 16 I told the lady this is very typical of how I feel and my heart rates won't be going down until they lay me back down. Guess what? I was right! My HR's continued to stay steady until they laid me back down at minute 45.
Once they tilted me back down, they immediately went from 150 to 75. I had major heart palpitations, PVC's, couplets, PACs. It felt awful. It was awesome to see they were captured on the EKG!
During the tilt-test that rude nurse came in at some point (I can't remember exactly when, but my HR's were into the 150's) and she was like..WOW you were RIGHT! Oh my goodness!!! Your heart rates really do get that high!! That's incredible.... Uh. wow thanks! I'm glad that I could prove you wrong jerk face. Do you think I would be lying about it? Taking your pulse isn't exactly rocket science with a freaking heart rate watch!
After that test, everyone treated me completely different. The weird attitudes were gone. They knew that I was seriously messed up. Dr. J (another cardiologist in that department) came in and said you have severe dysautonomia or maybe I should just say very marked dysautonomia. I think he was afraid to say severe, but it came out any way haha. Then Dr. F said practically the same thing as he did but in nicer bedside manner.
Overall I am happy that my heart cooperated! lol
My one complaint about Cleveland Clinic is that they judged me by the way I looked and not by what I was telling them. I look pretty healthy, I think.
But inside, my body is screaming for help. I told them that I'm a pretty strong willed person and I'm here now (after 10 years) because I need to control symptoms. It's getting to be too much for me and it's affecting my every day life. Even the winter was bad this year (before beta blockers), so that tells me I'm just getting worse and worse. If I can't get a break from this even in colder temperatures, then it's getting very serious.
On Monday I have to call them to schedule a few more autonomic tests. I'm getting the QSART testing, valsalvar maneuver and heart mapping done. I'm not completely sure what is all entailed, but I know that it doesn't involve any dyes or radioactive injections. I told her I wanted to avoid those for now. She was very understanding.
I'm not happy that they were treating me like crap when I first got there, but I'm glad they came around when they actually saw what I was going through. I feel like I had to prove myself to them!
Here are the vitals taken during my TTT. You can see how crazy my HR's go despite my blood pressure keeping up until the very end of the test. I think a small dose of HC would have made my BP's come back up a bit toward the end. I was feeling pretty exhausted at the end and immediately took 5 when I got down off the table. I had been due for a dose in the MIDDLE OF MY TEST!!
Stage----BP-----HR
C-01----101/61 74
C-02----105/56 72
C-03----105/61 74
C-Mean-104/59 73
30-01---114/66 89
30-02---109/61 88
45-01---106/61 103
45-02---108/68 106
70-01---115/71 119
70-02---114/64 123
70-03---114/67 126
70-04---106/63 125
70-05---108/59 133
70-06---104/60 133
70-07----99/64 135
70-08---107/63 125
70-09---108/64 135
70-10---107/60 133
70-11---104/68 135
70-12---101/66 133
70-13---107/62 140
70-14---103/63 140
70-15---121/74 145
70-16---106/61 145
70-17---109/66 142
70-18---127/81 150
70-19---107/74 148
70-20---116/71 145
70-21---121/68 140
70-22---101/61 140
70-23---103/67 148
70-24---114/54 153
70-25---107/66 148
70-26---121/49 142
70-27---108/63 140
70-28---101/46 140
70-29----88/65 148
70-30----98/53 145
70-31---102/69 145
70-32----90/65 140
70-33----99/50 148
70-34---101/69 148
70-35---100/57 150
70-36---100/55 150
70-37---101/66 148
70-38----95/67 145
70-39----94/57 150
70-40----88/64 148
70-41----96/48 148
70-42----93/48 153
70-43----92/69 150
70-44---103/55 150
70-45----95/51 150
Rec-01--126/62 77 I was having major heart palps. PVC's with couplets
Rec-02--114/59 75 1' Marked sinus arrhythmia was noted
Rec-03--110/57 84 More palps
Rec-04--107/55 83
Rec-05--107/53 83
We got there and thought I was going to have a panic attack from all the stress of trying to find the entrance to the parking garage. Things were horribly signed and the one way roads and inability to turn around ANYWAY made it extremely stressful and frustrating. They really need to make the signs larger and closer to the road so drivers can see them ! I had to pop a 15mg HC stress dose because I felt like I was going to lose it in the parking garage. That snapped me out of it!
I got in there and the nurse rubbed me the wrong way. She was a weird one. I was asked very specific questions about my "first episode", but when I tried to explain my point further, I was rudely interrupted. I brought in all of the requested labs (holter reports, ECG's, echos etc) and they didn't even seem to care! I don't know why I was even told to bring them in the first place. When I was trying to explain to the nurse my history, I felt like I was being interrogated by an enemy soldier. She was second guessing me, telling me there's no way I could possibly be feeling that way. When I told her that my heart rates hit 160 on a regular basis, she had the nerve to say "Well you walked the whole way back to the exam room, got weighed and you seemed fine". I told her very sternly that my heart was racing the ENTIRE time. Once again she just did not believe me at all. I was getting pretty ticked off the longer the nurse was in the room. She down played every single thing I would say.
Once the doctor got into the room, the exact same thing happened. She told me that everything I brought in today would need scanned into their computer system. Nothing is done on paper. Ok...so why was I told to bring all of this in? I would have happily emailed it to whoever takes care of that stuff.
The 2nd round of interrogation began. I don't know who was worse, the nurse or the doctor. For some unknown reason they focused so much attention to my "first episode" and didn't want to hear much about anything else.
My first episode was during summer band camp in 2000. I told her that it was very hot outside and I immediately felt weak, heavy, lightheaded and overheated. She said, well if this happened as soon as you walked outside, then you were probably not dehydrated. I told her yeah that's what I thought too. She asked me if I sought medical treatment or went to the ER and I told her no. I just sucked it up and went about my marching. No one else was having these problems.
Learning the marching formations, bending down and holding my arms up to play was awful. She said that it seemed pretty unlikely that I could finish 2 weeks of marching and do all of this if my symptoms were as bad as I described. I told her not to underestimate determination...LOL I'm a pretty stubborn person.
Eventually we got to more recent history where it was first discovered in 2007 that I was having periods of tachycardia. I told her no one ever took me seriously, which is ironic because THEY WEREN'T TAKING ME SERIOUSLY! I told her I was diagnosed with adrenal insufficiency, b12 deficiency, alopecia areata. She didn't even care about the AI.
After the interrogation, she listened to my heart and told me that she'd like to do a tilt test. She explained how they do it at Cleveland Clinic which was much different than what I had seen online. They first take 3 minutes of control heart rates/BP's, then tilt you for 2 minutes at 30 degrees, then tilt you for 2 minutes at 45 degrees. After that they tilt you for up to 45 minutes at 70 degrees. I told her that I wanted to have my catecholamine levels tested with this test, so she added that on.
I went back and was strapped down. They first placed the IV in my arm and I had to rest for 30 minutes to get the supine catecholamine levels. I was glad to see that they did this right. After 30 minutes, they couldn't get any blood out of my vein since I was lying down! I have no idea what they ended up doing, but it worked. I just hope the levels weren't higher than normal because I was a little freaked out that they couldn't get blood...
They took 3 minutes of control HR's/BP's and then it began. If you've never had a tilt test done, it's an experience no one can possibly explain properly to give you the sense of how miserable it feels. As they started tilting me up, I could just feel my body go..OH NO! NOT AGAIN! haha
Immediately my HR's began to climb. Once they put me up the full way to 70 degrees, it was bad. First reading was 119 and that's the lowest HR I had during the entire test. I got all the way up to around 150 and stayed there for the entire test. The nice techs/nurses doing my TTT took down any comments or symptoms I was having during the test and it is interesting. At minute 6 I told her I was having butterflies in my stomach. At minute 14, I had that same feeling. Then at minute 15, I started to sweat and felt really hot. I had them pull the sheet down off of me. In that room, it was FREEZING beforehand so obviously my body was responding to something. Minute 16 I told the lady this is very typical of how I feel and my heart rates won't be going down until they lay me back down. Guess what? I was right! My HR's continued to stay steady until they laid me back down at minute 45. Once they tilted me back down, they immediately went from 150 to 75. I had major heart palpitations, PVC's, couplets, PACs. It felt awful. It was awesome to see they were captured on the EKG!
During the tilt-test that rude nurse came in at some point (I can't remember exactly when, but my HR's were into the 150's) and she was like..WOW you were RIGHT! Oh my goodness!!! Your heart rates really do get that high!! That's incredible.... Uh. wow thanks! I'm glad that I could prove you wrong jerk face. Do you think I would be lying about it? Taking your pulse isn't exactly rocket science with a freaking heart rate watch!
After that test, everyone treated me completely different. The weird attitudes were gone. They knew that I was seriously messed up. Dr. J (another cardiologist in that department) came in and said you have severe dysautonomia or maybe I should just say very marked dysautonomia. I think he was afraid to say severe, but it came out any way haha. Then Dr. F said practically the same thing as he did but in nicer bedside manner.
Overall I am happy that my heart cooperated! lol
My one complaint about Cleveland Clinic is that they judged me by the way I looked and not by what I was telling them. I look pretty healthy, I think.
But inside, my body is screaming for help. I told them that I'm a pretty strong willed person and I'm here now (after 10 years) because I need to control symptoms. It's getting to be too much for me and it's affecting my every day life. Even the winter was bad this year (before beta blockers), so that tells me I'm just getting worse and worse. If I can't get a break from this even in colder temperatures, then it's getting very serious.On Monday I have to call them to schedule a few more autonomic tests. I'm getting the QSART testing, valsalvar maneuver and heart mapping done. I'm not completely sure what is all entailed, but I know that it doesn't involve any dyes or radioactive injections. I told her I wanted to avoid those for now. She was very understanding.
I'm not happy that they were treating me like crap when I first got there, but I'm glad they came around when they actually saw what I was going through. I feel like I had to prove myself to them!
Here are the vitals taken during my TTT. You can see how crazy my HR's go despite my blood pressure keeping up until the very end of the test. I think a small dose of HC would have made my BP's come back up a bit toward the end. I was feeling pretty exhausted at the end and immediately took 5 when I got down off the table. I had been due for a dose in the MIDDLE OF MY TEST!!
Stage----BP-----HR
C-01----101/61 74
C-02----105/56 72
C-03----105/61 74
C-Mean-104/59 73
30-01---114/66 89
30-02---109/61 88
45-01---106/61 103
45-02---108/68 106
70-01---115/71 119
70-02---114/64 123
70-03---114/67 126
70-04---106/63 125
70-05---108/59 133
70-06---104/60 133
70-07----99/64 135
70-08---107/63 125
70-09---108/64 135
70-10---107/60 133
70-11---104/68 135
70-12---101/66 133
70-13---107/62 140
70-14---103/63 140
70-15---121/74 145
70-16---106/61 145
70-17---109/66 142
70-18---127/81 150
70-19---107/74 148
70-20---116/71 145
70-21---121/68 140
70-22---101/61 140
70-23---103/67 148
70-24---114/54 153
70-25---107/66 148
70-26---121/49 142
70-27---108/63 140
70-28---101/46 140
70-29----88/65 148
70-30----98/53 145
70-31---102/69 145
70-32----90/65 140
70-33----99/50 148
70-34---101/69 148
70-35---100/57 150
70-36---100/55 150
70-37---101/66 148
70-38----95/67 145
70-39----94/57 150
70-40----88/64 148
70-41----96/48 148
70-42----93/48 153
70-43----92/69 150
70-44---103/55 150
70-45----95/51 150
Rec-01--126/62 77 I was having major heart palps. PVC's with couplets
Rec-02--114/59 75 1' Marked sinus arrhythmia was noted
Rec-03--110/57 84 More palps
Rec-04--107/55 83
Rec-05--107/53 83
Monday, May 24, 2010
Mentally Preparing Myself for Cleveland Clinic
I called CC today to just get some more information on what I'll need to do. It looks like I might be needed more than 1 day, so we are going to have to make some arrangements.
I know that my adrenal insufficiency diagnosis is going to be a problem with this doctor. I told the assistant on the phone, that I wanted it noted on my chart that I have this so it's not a surprise/problem when I come in next week! It is with every single doctor I see.
"Yeah...I never had a stim test." As soon as those words come out of my mouth, the doctor will probably go into the "well it's not good to be on steroids if you don't need them and they'll make your bones crumble". I can already hear it now. So I'm wondering if this doctor is going to poo-poo it or want me to see one of their endos. HAHA If they are willing to put me on Dex and then do a stim test, I say bring it on! There's no way I can come off the HC as I'll likely go into crisis. I couldn't even lower down to 15mg! And...there's no way my adrenals haven't atrophied over the past year on HC. They won't likely stim whatsoever and then I'll have my nice Addison's diagnosis. I still have to wonder about my mildly elevated 17-OH progesterone. My hormone doctor immediately dismissed it, saying it wasn't "high enough". I'll never know. I've seen some info that late-onset CAH usually doesn't present itself with the crazy high levels until stimmed with synthetic ACTH.
Since it's warm out, I really need to be on florinef. It's killing me. My sodium is dropping (new blood work) and I just feel terrible as soon as the room heats up. Gotta love those salt cravings, which are nearly impossible for me to cure since I've stopped eating vinegars (olives, pickles) and all wheat (crackers, pretzels). I had one of those awful headaches yesterday and since I wasn't on any florinef, I'm thinking the headaches might actually be low aldosterone or low cortisol!!! I'm realizing that lowering my dose hasn't been so good (took a few weeks!), so I'm taking 20mg at the moment dosed 10, 5, 5 So..I'm going to try taking florinef again. Tomorrow I'm trying 1/4 tab of florinef and going from there. I'm not worried about it messing with my tilt test because it didn't before.
All I hope is that CC takes me seriously and runs tests. That's all. I don't need to walk out of there with a solution or even any new meds in my hand. I just want to get enough testing done to determine the type of POTS I have. Is this a mitochondrial disorder? Genetic disorder? Blood pooling in my limbs? High catecholamine levels? If I can get some answers to those questions, then I'll be satisfied. I truly think I have something WRONG with my body. I've been trying to do some leg exercises lately. Oh my gosh, it's soo awful for me. Today I woke up feeling pretty damn good with no headache. Then I did a bunch of leg raises (while LYING DOWN) and my heart was likely 150+. Leg exercises are worse than arm exercises for me, which isn't supposed to happen...I don't get it anymore and I don't even try to get it.
I know that my adrenal insufficiency diagnosis is going to be a problem with this doctor. I told the assistant on the phone, that I wanted it noted on my chart that I have this so it's not a surprise/problem when I come in next week! It is with every single doctor I see.
"Yeah...I never had a stim test." As soon as those words come out of my mouth, the doctor will probably go into the "well it's not good to be on steroids if you don't need them and they'll make your bones crumble". I can already hear it now. So I'm wondering if this doctor is going to poo-poo it or want me to see one of their endos. HAHA If they are willing to put me on Dex and then do a stim test, I say bring it on! There's no way I can come off the HC as I'll likely go into crisis. I couldn't even lower down to 15mg! And...there's no way my adrenals haven't atrophied over the past year on HC. They won't likely stim whatsoever and then I'll have my nice Addison's diagnosis. I still have to wonder about my mildly elevated 17-OH progesterone. My hormone doctor immediately dismissed it, saying it wasn't "high enough". I'll never know. I've seen some info that late-onset CAH usually doesn't present itself with the crazy high levels until stimmed with synthetic ACTH.
Since it's warm out, I really need to be on florinef. It's killing me. My sodium is dropping (new blood work) and I just feel terrible as soon as the room heats up. Gotta love those salt cravings, which are nearly impossible for me to cure since I've stopped eating vinegars (olives, pickles) and all wheat (crackers, pretzels). I had one of those awful headaches yesterday and since I wasn't on any florinef, I'm thinking the headaches might actually be low aldosterone or low cortisol!!! I'm realizing that lowering my dose hasn't been so good (took a few weeks!), so I'm taking 20mg at the moment dosed 10, 5, 5 So..I'm going to try taking florinef again. Tomorrow I'm trying 1/4 tab of florinef and going from there. I'm not worried about it messing with my tilt test because it didn't before.
All I hope is that CC takes me seriously and runs tests. That's all. I don't need to walk out of there with a solution or even any new meds in my hand. I just want to get enough testing done to determine the type of POTS I have. Is this a mitochondrial disorder? Genetic disorder? Blood pooling in my limbs? High catecholamine levels? If I can get some answers to those questions, then I'll be satisfied. I truly think I have something WRONG with my body. I've been trying to do some leg exercises lately. Oh my gosh, it's soo awful for me. Today I woke up feeling pretty damn good with no headache. Then I did a bunch of leg raises (while LYING DOWN) and my heart was likely 150+. Leg exercises are worse than arm exercises for me, which isn't supposed to happen...I don't get it anymore and I don't even try to get it.
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