Last night I woke up and my eye was pretty wonky. There were definitely some flashing lights. After the mini panic attack, I calmed myself down and just stared into the dark to see exactly what was happening. I got up to get some water and realized that everything was OK.
I am definitely seeing more bright spots in my vision that go away just about as fast as they come on. Yesterday my eye was pretty good. Didn't notice anything until late last night when I asked my husband if there were fireflies out (lightning bugs) and he told me no...lol So obviously I was seeing some spots last night too.
When I woke up today for the day, my eye was not good. It felt very heavy and there was this strange pressure on the left side of my head. Thankfully that discomfort has gone away for the most part and the vision seems better now. If I can make it through this week to my next eye appointment, I will be relieved. Right now I just feel like it could "go" at any moment and I'll have to call the emergency number on the doctor's card.
I asked my hormone doctor exactly what I would need to do if I needed surgery and I'll have to mega stress dose before and after any type of surgery. He said to take 50-60mg of HC an hour before the surgery and then another 50-60mg of HC afterward as well. Then I might have to taper down the next day or not. I need to be ready for whatever happens.
Sunday, May 31, 2009
Thursday, May 28, 2009
Second Opinion on my eye problems
Today I got my second opinion on my eye and it looks like the retina is thinning. There is a risk for a detached or tore vitreous and retina, so I have to go back in a week to see if it is progressing.
This is certainly not something I was looking to deal with, but that's life right?!
There is no correlation between my meds, pituitary tumors or my medical conditions that would be causing this. It is likely because I am very nearsighted which drastically increases your risk for it. My dad also had a torn retina about 10 years ago, so that puts me at higher risk too. Needless to say I am really scared. At least this new doctor is concerned about it and wants to keep checking it on a weekly basis for at least a few weeks to see what happens. Obviously if the flashes get worse or if more floaters show up, then I have to call him immediately!
I'll keep everyone posted on how this turns out.
Ninja edit---I found a picture of what I have here...If you scroll all the way down to where it says "3.) White Without Pressure" You can see what my retina looks like atm.
This is certainly not something I was looking to deal with, but that's life right?!
There is no correlation between my meds, pituitary tumors or my medical conditions that would be causing this. It is likely because I am very nearsighted which drastically increases your risk for it. My dad also had a torn retina about 10 years ago, so that puts me at higher risk too. Needless to say I am really scared. At least this new doctor is concerned about it and wants to keep checking it on a weekly basis for at least a few weeks to see what happens. Obviously if the flashes get worse or if more floaters show up, then I have to call him immediately!
I'll keep everyone posted on how this turns out.
Ninja edit---I found a picture of what I have here...If you scroll all the way down to where it says "3.) White Without Pressure" You can see what my retina looks like atm.
Tuesday, May 26, 2009
Eye Problems
Last week some time I noticed that the vision in my left eye got really bad overnight. It was really nice here so I was wearing my contacts rather than my glasses. I hate wearing the clip-on on my glasses.
Then a few days later, I noticed that my eye was not "feeling" right. It felt heavy, almost like it "needed to rest". It sounds really weird, but I felt like I needed to take my eye ball out and let it sleep for a while. I knew something wasn't right, but just shrugged it off.
Then 3 days ago I started to get a flash of light in the far peripheral vision of my eye. It wasn't all the time and I only really noticed it when it was dark out or if I was in a dark room. Needless to say that scared the shit out of me, so this whole entire holiday weekend I was anxiously waiting to call the eye doctor.
Today I finally saw the eye doctor and he kind of blew it off at first saying it was likely an optical migraine (because I'm so young). This was the first time in 15 years that the eye doctor dilated my eyes (because I'm so young). Gosh darnit, I am really sick of being young and getting treated like shit.
Anyway...When he dilated my pupils and began the exam, he said that my vitreous is "tugging" at the retina on my left eye. They use a bunch of mirrors and lights to look deep into the retinas and he said when he flashed the light in that area, it had a milky appearance which indicates tension. He said not to worry about it too much (uh-huh right), but he told me what to look out for/warning signs for a detached or torn retina. Technically I already have some of the symptoms, but he said if the lights get worse or if more floaters show up out of no where to call him immediately or get to the ER.../sigh
In addition to this, my prescription went up -0.50 in less than 6 month's time. Something is not right! That puts my left eye at -5.00. It is only -0.25 away from the right eye which has always been my "bad eye" ever since 4th grade. Consistently there was always -0.75 difference between the eyes.
Now as you can imagine, I'm totally freaked out! I've been needing to stress dose... My dad had a torn retina about 10 years ago and his vision has never been the same since. He has permanent floaters in his eye and he still to this day has flashing lights.
So I think I might go for a second opinion just to calm my nerves. Of all the things I'd never want to lose, that is my eye sight. LOL It's kind of important...just a little bit.
Then a few days later, I noticed that my eye was not "feeling" right. It felt heavy, almost like it "needed to rest". It sounds really weird, but I felt like I needed to take my eye ball out and let it sleep for a while. I knew something wasn't right, but just shrugged it off.
Then 3 days ago I started to get a flash of light in the far peripheral vision of my eye. It wasn't all the time and I only really noticed it when it was dark out or if I was in a dark room. Needless to say that scared the shit out of me, so this whole entire holiday weekend I was anxiously waiting to call the eye doctor.
Today I finally saw the eye doctor and he kind of blew it off at first saying it was likely an optical migraine (because I'm so young). This was the first time in 15 years that the eye doctor dilated my eyes (because I'm so young). Gosh darnit, I am really sick of being young and getting treated like shit.
Anyway...When he dilated my pupils and began the exam, he said that my vitreous is "tugging" at the retina on my left eye. They use a bunch of mirrors and lights to look deep into the retinas and he said when he flashed the light in that area, it had a milky appearance which indicates tension. He said not to worry about it too much (uh-huh right), but he told me what to look out for/warning signs for a detached or torn retina. Technically I already have some of the symptoms, but he said if the lights get worse or if more floaters show up out of no where to call him immediately or get to the ER.../sigh
In addition to this, my prescription went up -0.50 in less than 6 month's time. Something is not right! That puts my left eye at -5.00. It is only -0.25 away from the right eye which has always been my "bad eye" ever since 4th grade. Consistently there was always -0.75 difference between the eyes.
Now as you can imagine, I'm totally freaked out! I've been needing to stress dose... My dad had a torn retina about 10 years ago and his vision has never been the same since. He has permanent floaters in his eye and he still to this day has flashing lights.
So I think I might go for a second opinion just to calm my nerves. Of all the things I'd never want to lose, that is my eye sight. LOL It's kind of important...just a little bit.
Saturday, May 23, 2009
Waiting on New Blood Results and More
It's been a while since my last post. I've been busy with some work related things.
I had some new blood work drawn on Monday, so I am waiting to hear back on those results. TSH, FT3,FT4, DHEA-S and my electrolytes were checked. I'm very curious to see what my thyroid is doing. I've been having that weird feeling in my throat again.
I managed to burn the sh*t out of my right arm on the oven. What I did was really stupid. I reached in without pulling the grill out and I bumped the top of my forearm on the metal tray on top. My skin made that scary *tsss* noise and I immediately freaked out. I had to stress dose after that little event! lol Now I'm trying to get this wound to heal, but it's going to take a long time. Probably a few weeks and up to a few months until it's back to normal. I'll get some pictures up tomorrow--(it's too late right now).
The HC and florinef have been going really well. I went back down to 27.5mg of HC and 3/4 tab or florinef daily which is my sweet spot at the moment. The weather has been pretty hot and humid and I can say without a doubt that these meds are helping me. My heart rate isn't going into the 150's simply from standing up. My blood pressure isn't dropping into the 70's/50's simply from standing up. It's a wonderful feeling to be able to go outside and play with my dog and weed the flower garden without literally almost dying from it.
The one complaint I do have is the fluid retention in my feet at night. I need to talk to the doctor about this because it's pretty bad some days. My feet and hands are swelling REALLY bad, but I don't think I can back off either the HC or florinef. If anything, I think I need to raise the florinef another 1/4 tab, but I'm waiting to see what the electrolytes say!
That's all for now.
I had some new blood work drawn on Monday, so I am waiting to hear back on those results. TSH, FT3,FT4, DHEA-S and my electrolytes were checked. I'm very curious to see what my thyroid is doing. I've been having that weird feeling in my throat again.
I managed to burn the sh*t out of my right arm on the oven. What I did was really stupid. I reached in without pulling the grill out and I bumped the top of my forearm on the metal tray on top. My skin made that scary *tsss* noise and I immediately freaked out. I had to stress dose after that little event! lol Now I'm trying to get this wound to heal, but it's going to take a long time. Probably a few weeks and up to a few months until it's back to normal. I'll get some pictures up tomorrow--(it's too late right now).
The HC and florinef have been going really well. I went back down to 27.5mg of HC and 3/4 tab or florinef daily which is my sweet spot at the moment. The weather has been pretty hot and humid and I can say without a doubt that these meds are helping me. My heart rate isn't going into the 150's simply from standing up. My blood pressure isn't dropping into the 70's/50's simply from standing up. It's a wonderful feeling to be able to go outside and play with my dog and weed the flower garden without literally almost dying from it.
The one complaint I do have is the fluid retention in my feet at night. I need to talk to the doctor about this because it's pretty bad some days. My feet and hands are swelling REALLY bad, but I don't think I can back off either the HC or florinef. If anything, I think I need to raise the florinef another 1/4 tab, but I'm waiting to see what the electrolytes say!
That's all for now.
Sunday, May 10, 2009
Finding my dose
Now that I've backed down to 27.5mg of HC, I am feeling much better. I lost all of that weight almost immediately too, which is really strange. haha! I'm still a little heavier than I would like to be, but I think the last few pounds I'll need to exercise off. Unfortunately I don't think I'm quite ready for heavy exercise yet. I'd like to give myself another few weeks on the HC to see how it goes. My thyroid may also be causing some weight gain too.
I've been taking my florinef a little closer together. Yesterday it was pretty nice outside, so I was weeding the driveway and raking up some old leaves. I could feel my salt-wasting symptoms coming on just slightly, so I decided I'd take another 1/4 tab of florinef to see what would happen! Well it fixed me right up! My heart palps chilled out and I was good for the rest of the day. I skipped my night time dose of florinef and was totally fine this morning. This little experiment has given me some insight. I think I burn through the florinef really quickly for some reason.
My mood has been much better on this lower dose of HC and I've been wanting to get up around 8:30-9AM every morning! It's an absolutely wonderful feeling to start the day off early!!! My appetite has been better too (in a good way). Some days I'd barely eat because I was not hungry at all and now I feel like I'm eating more regularly. Because of this, I've been trying to get better at cooking different meals. This week I made some wild caught cod, homemade stuffed peppers, buffalo flank steaks, gluten-free pancakes and more! I've been eating breakfast too, which is completely unheard of for me. I haven't eaten breakfast since I was 13 years old. Every morning I used to be so nauseous I would puke if I ate...[No I was not pregnant, everyone would always say that to me.../sigh].
All and all I think things are going pretty well. I'm certainly not perfect yet and if I get startled I get the shakes, which tells me to begin stress dosing immediately. I'm still trying to figure all of this out and it's really quite confusing.
I've been taking my florinef a little closer together. Yesterday it was pretty nice outside, so I was weeding the driveway and raking up some old leaves. I could feel my salt-wasting symptoms coming on just slightly, so I decided I'd take another 1/4 tab of florinef to see what would happen! Well it fixed me right up! My heart palps chilled out and I was good for the rest of the day. I skipped my night time dose of florinef and was totally fine this morning. This little experiment has given me some insight. I think I burn through the florinef really quickly for some reason.
My mood has been much better on this lower dose of HC and I've been wanting to get up around 8:30-9AM every morning! It's an absolutely wonderful feeling to start the day off early!!! My appetite has been better too (in a good way). Some days I'd barely eat because I was not hungry at all and now I feel like I'm eating more regularly. Because of this, I've been trying to get better at cooking different meals. This week I made some wild caught cod, homemade stuffed peppers, buffalo flank steaks, gluten-free pancakes and more! I've been eating breakfast too, which is completely unheard of for me. I haven't eaten breakfast since I was 13 years old. Every morning I used to be so nauseous I would puke if I ate...[No I was not pregnant, everyone would always say that to me.../sigh].
All and all I think things are going pretty well. I'm certainly not perfect yet and if I get startled I get the shakes, which tells me to begin stress dosing immediately. I'm still trying to figure all of this out and it's really quite confusing.
Wednesday, May 6, 2009
Yep--Too Much HC!
Okay these weird pains and weight gain is from either too much HC, florinef or a combination of that with hypothyroid. haha My goodness...
Under doctor's orders, I am supposed to experiment with my dosing to see if this fluid retention calms the hell down. Gaining 8 lbs in 2-3 days is not normal whatsoever. The new pants I bought just last week are tight! YIKES!
I think I'm going to go back down to 1/4 tab florinef, twice daily. Perhaps 1/2 tab in the morning is just too much for me right now with the higher dose of HC.
My game plan tomorrow is...
1/4 florinef in AM
1/4 florinef in PM
10, 10, 7.5, (maybe a night dose if I feel I need it)
This dosing method was making me nauseous in between pills so I'll have to see if this happens again (which is why I was told to up my dose). Maybe it was just the increase in florinef? I'm going to get this figured sooner or later.
Under doctor's orders, I am supposed to experiment with my dosing to see if this fluid retention calms the hell down. Gaining 8 lbs in 2-3 days is not normal whatsoever. The new pants I bought just last week are tight! YIKES!
I think I'm going to go back down to 1/4 tab florinef, twice daily. Perhaps 1/2 tab in the morning is just too much for me right now with the higher dose of HC.
My game plan tomorrow is...
1/4 florinef in AM
1/4 florinef in PM
10, 10, 7.5, (maybe a night dose if I feel I need it)
This dosing method was making me nauseous in between pills so I'll have to see if this happens again (which is why I was told to up my dose). Maybe it was just the increase in florinef? I'm going to get this figured sooner or later.
Tuesday, May 5, 2009
Terrible Shin Pain Today
My left shin is hurting so bad today. I have no idea what is causing this as I didn't do a damn thing yesterday. It was hurting last night too, but didn't think much of it.
I was on a higher dose of HC and I wonder what is happening. I've had shin pain when on 27.5mg of HC, so I'm not convinced it's only from the HC. Maybe my thyroid has finally decided to stop working. I've been having a lot of hoarseness in my voice. I have also been having trouble swallowing and eating food. Stuff keeps getting stuck down there as it moves into the esophagus. The doc wanted me to up my nighttime dose to see if I slept better and sadly I have been. I'm not feeling good throughout the rest of the day though.
I think tomorrow I'm going to try 10, 10, 7.5 10. It's really a weird way to dose HC, but the doc told me to try the 10mg at night for a full week. I'm not about to abandon that idea right now.
I'm also very agitated and annoyed today. Now that can be a sign of too much HC, so I'll have to keep an eye on things. In addition to that I've gained another 8 lbs! Yay. That does a lot for the self-esteem.
I was on a higher dose of HC and I wonder what is happening. I've had shin pain when on 27.5mg of HC, so I'm not convinced it's only from the HC. Maybe my thyroid has finally decided to stop working. I've been having a lot of hoarseness in my voice. I have also been having trouble swallowing and eating food. Stuff keeps getting stuck down there as it moves into the esophagus. The doc wanted me to up my nighttime dose to see if I slept better and sadly I have been. I'm not feeling good throughout the rest of the day though.
I think tomorrow I'm going to try 10, 10, 7.5 10. It's really a weird way to dose HC, but the doc told me to try the 10mg at night for a full week. I'm not about to abandon that idea right now.
I'm also very agitated and annoyed today. Now that can be a sign of too much HC, so I'll have to keep an eye on things. In addition to that I've gained another 8 lbs! Yay. That does a lot for the self-esteem.
Sunday, May 3, 2009
Increasing HC Dose
I got word just a few moments ago that I need to increase my HC dose and that I should not be experiencing nausea just before the next dose. That means I am getting far too low!
Today I will be dosing 12.5mg, 12.5mg, 7.5mg, 10mg. The 10mg at night might seem pretty high, but I am still experiencing night sweats and increased thirst. We've tried lower doses (2.5 and 5mg) and that didnt' cut it either.
I only have to try this dose for a few days to see how it works and I can always back off if need be. We'll see how this goes! I am feeling nauseous right now because I haven't taken my dose yet. I wasn't expecting to stay awake this long, so I should probably get my meds in me now before I crash.
I think I have a UTI, so I have to get that checked today. There's always something going wrong, I swear...
Today I will be dosing 12.5mg, 12.5mg, 7.5mg, 10mg. The 10mg at night might seem pretty high, but I am still experiencing night sweats and increased thirst. We've tried lower doses (2.5 and 5mg) and that didnt' cut it either.
I only have to try this dose for a few days to see how it works and I can always back off if need be. We'll see how this goes! I am feeling nauseous right now because I haven't taken my dose yet. I wasn't expecting to stay awake this long, so I should probably get my meds in me now before I crash.
I think I have a UTI, so I have to get that checked today. There's always something going wrong, I swear...
Friday, May 1, 2009
Feeling Crazy Today
I feel absolutely out of my mind today. Jittery, nervous, anxious and very very shaky. My hands are trembling quite a bit. This morning I took 1/2 tab of florinef and yet my pulse is high and blood pressure is falling upon standing.
Sitting Pulse 102/77 HR 113
Standing Pulse 96/76 HR 123
AHHH my pulse was doing so well too....I think I'm worse today because the humidity has finally climbed. It is 70% humidity and 71 degrees. That may not seem hot to those of you who live in a dry climate. I assure you that 70% humidity isn't good no matter what temperature.
I'm supposed to continue adding florinef 1/4 tab at a time. My doc said most people are optimized at 1-2 tabs and I only started taking 3/4 tab today.
We'll see what happens. I hope the shaking hands are just low cortisol symptoms.
Sitting Pulse 102/77 HR 113
Standing Pulse 96/76 HR 123
AHHH my pulse was doing so well too....I think I'm worse today because the humidity has finally climbed. It is 70% humidity and 71 degrees. That may not seem hot to those of you who live in a dry climate. I assure you that 70% humidity isn't good no matter what temperature.
I'm supposed to continue adding florinef 1/4 tab at a time. My doc said most people are optimized at 1-2 tabs and I only started taking 3/4 tab today.
We'll see what happens. I hope the shaking hands are just low cortisol symptoms.
Tuesday, April 28, 2009
Sweet Tasting Water and Still Recuperating
I am still trying to recuperate from yesterday. This morning I had some self-ordered labs drawn and I think I picked an excellent day to have them done. I am quite curious to see what the results are of my electrolytes.
About 20 minutes ago I began to feel really sick again. Like someone is pressing on my throat. I immediately took 5mg of HC, but think I should probably take some more. This was one of my first symptoms yesterday. It's almost difficult to swallow. It's a sensation that I cannot explain properly.
Water has been sweet tasting all day long. It is driving me completely insane because it takes terrible. Take a glass of water and put in 2 large spoonfuls of stevia. That's exactly what plain water tastes to me at the moment. My doctor doesn't know what causes this, but it must have something to do with dehydration, electrolyte imbalance or low aldosterone.
Let's hope I can get through this. If not I will be heading to the ER. I just hope to God they know what to do if it gets bad again. I'm worried that they won't take me seriously.
About 20 minutes ago I began to feel really sick again. Like someone is pressing on my throat. I immediately took 5mg of HC, but think I should probably take some more. This was one of my first symptoms yesterday. It's almost difficult to swallow. It's a sensation that I cannot explain properly.
Water has been sweet tasting all day long. It is driving me completely insane because it takes terrible. Take a glass of water and put in 2 large spoonfuls of stevia. That's exactly what plain water tastes to me at the moment. My doctor doesn't know what causes this, but it must have something to do with dehydration, electrolyte imbalance or low aldosterone.
Let's hope I can get through this. If not I will be heading to the ER. I just hope to God they know what to do if it gets bad again. I'm worried that they won't take me seriously.
Monday, April 27, 2009
Adrenal Crisis--What an experience!
Well I had a mini adrenal crisis today. /sigh Even stress dosing didn't make going to court any easier and I completely lost it just as the arbitration was about to begin.
I began to shake uncontrollably, hyperventilate and went from being hot to cold all in a matter of seconds. My husband said that my lips, hands and face were pale and turning blue and I was staring at the ceiling making bubbles with my lips! LOL He said I was not responding to him and that my pupils were dilated. He was about 15 seconds away from calling 911 when I finally heard him and said that I could hear him.
I have contacted the doctor and am shopping for a medic alert bracelet right now. If my husband hadn't been there, I think I would have died. I told him yesterday what to look for in adrenal crisis. I had him read over a few websites and he acted accordingly. Thank God!
Now I'm just trying to pick up the pieces. I feel like crap and don't know what I should do. I have contacted the doctor about what happened. I'm just glad that I am OK.
I began to shake uncontrollably, hyperventilate and went from being hot to cold all in a matter of seconds. My husband said that my lips, hands and face were pale and turning blue and I was staring at the ceiling making bubbles with my lips! LOL He said I was not responding to him and that my pupils were dilated. He was about 15 seconds away from calling 911 when I finally heard him and said that I could hear him.
I have contacted the doctor and am shopping for a medic alert bracelet right now. If my husband hadn't been there, I think I would have died. I told him yesterday what to look for in adrenal crisis. I had him read over a few websites and he acted accordingly. Thank God!
Now I'm just trying to pick up the pieces. I feel like crap and don't know what I should do. I have contacted the doctor about what happened. I'm just glad that I am OK.
Saturday, April 25, 2009
More Blood Work and HC
I got my blood results back finally and here's what it said.
More of nothing...
21-Hydroxlyase Antibodies <1.0--(<1.0)
Antiadrenal Antibodies, Quant Negative--(Negative))
IGF-1 214--(116-358) Doc said this was a little low
17-alpha-Hydroxyprogesterone 104 (30-100 Follicular) Doc said this isn't high enough to worry about.
I guess I should be thankful that my body isn't attacking my adrenal glands, but...I am back to not understanding WHY my adrenals aren't working. Maybe it's just mercury toxicity? I wanted to know the reason, so that I could move on with my life. I have this condition yet no doctor can pinpoint the reason...
There is some good news.
The doctor had me start on 30mg of hydrocortisone on Thursday and it's really helping. In combination with the florinef, I can already tell a difference in my heat intolerance. While I'm not completely better yet, it must have been 85 in our house yesterday and I felt pretty good. I was extremely thirsty all day yesterday and just kept a filled Berkey water bottle next to me. It helped to keep me hydrated.
My sleep on the other hand has been absolutely terrible. I keep waking up at night, hot, sweating and extremely thirsty. Sometimes I have to use the bathroom too. Is this low aldosterone, low cortisol or do I really have diabetes insipidus? At this point, I have no idea. I haven't been taking my DDAVP recently because I wanted to see what the florinef would do for me. I'm still not sure.
Yesterday I didn't feel as good as the first day, but I'm hoping the irritability was just PMS...lol All and all I am very pleased. I am trying to wake up at a more "normal" time, so my HC doses are right. Unfortunately today I woke up around 9AM, but that' isn't too bad considering our sleep schedule used to be really screwed up waking up at 8PM and going to sleep when most folks are eating lunch.
I think I might be getting some low potassium symptoms (chest pains, irregular heart beats, leg cramps), so I self-ordered some blood work through econolabs.com. I ordered a CBC with differential and a CMP (comprehensive metabolic panel) to check my blood counts, liver enzymes and electrolyte balance. As I was writing this I checked my email and the requisition form was sent to me email already! That was really fast.
I'll have to wait and get this checked on Tuesday because Monday morning we have to go to court and I'm already nervous about it.
More of nothing...
21-Hydroxlyase Antibodies <1.0--(<1.0)
Antiadrenal Antibodies, Quant Negative--(Negative))
IGF-1 214--(116-358) Doc said this was a little low
17-alpha-Hydroxyprogesterone 104 (30-100 Follicular) Doc said this isn't high enough to worry about.
I guess I should be thankful that my body isn't attacking my adrenal glands, but...I am back to not understanding WHY my adrenals aren't working. Maybe it's just mercury toxicity? I wanted to know the reason, so that I could move on with my life. I have this condition yet no doctor can pinpoint the reason...
There is some good news.
The doctor had me start on 30mg of hydrocortisone on Thursday and it's really helping. In combination with the florinef, I can already tell a difference in my heat intolerance. While I'm not completely better yet, it must have been 85 in our house yesterday and I felt pretty good. I was extremely thirsty all day yesterday and just kept a filled Berkey water bottle next to me. It helped to keep me hydrated.
My sleep on the other hand has been absolutely terrible. I keep waking up at night, hot, sweating and extremely thirsty. Sometimes I have to use the bathroom too. Is this low aldosterone, low cortisol or do I really have diabetes insipidus? At this point, I have no idea. I haven't been taking my DDAVP recently because I wanted to see what the florinef would do for me. I'm still not sure.
Yesterday I didn't feel as good as the first day, but I'm hoping the irritability was just PMS...lol All and all I am very pleased. I am trying to wake up at a more "normal" time, so my HC doses are right. Unfortunately today I woke up around 9AM, but that' isn't too bad considering our sleep schedule used to be really screwed up waking up at 8PM and going to sleep when most folks are eating lunch.
I think I might be getting some low potassium symptoms (chest pains, irregular heart beats, leg cramps), so I self-ordered some blood work through econolabs.com. I ordered a CBC with differential and a CMP (comprehensive metabolic panel) to check my blood counts, liver enzymes and electrolyte balance. As I was writing this I checked my email and the requisition form was sent to me email already! That was really fast.
I'll have to wait and get this checked on Tuesday because Monday morning we have to go to court and I'm already nervous about it.
Sunday, April 19, 2009
Not Much To Report
It's been quiet. My blood work still isn't back from the doctor, so I just continue to wait.
Unfortunately cutting back on the salt has not made all of the weight go away, so today I bought 4 new pairs of pants. Hopefully this will keep me covered for a while. I can tell it is ALL water weight though. My calves are very full looking again and I have been even more strict with my diet. Nothing is helping at all.
I hope this week I find out whether or not I have adrenal antibodies.
I raised my florinef yesterday. Now I am taking 1/4 tab, twice a day. It's helping me, but not enough yet!
Unfortunately cutting back on the salt has not made all of the weight go away, so today I bought 4 new pairs of pants. Hopefully this will keep me covered for a while. I can tell it is ALL water weight though. My calves are very full looking again and I have been even more strict with my diet. Nothing is helping at all.
I hope this week I find out whether or not I have adrenal antibodies.
I raised my florinef yesterday. Now I am taking 1/4 tab, twice a day. It's helping me, but not enough yet!
Tuesday, April 7, 2009
ER Blood Work
I finally got the blood work back from the ER visit at the end of December and there are 3 things on there that were interesting.
Here's all of the results. Remember I went in there with chest pains, so they did all the cardiac and blood clot tests. I know nothing about those to be honest.
December 29, 2008
PT TEST 10.7--(9-12)
INR 1.1--(0.9-1.2)
PTT TEST 28.7--(20-35 seconds)
D-Dimer 0.51--(0.54-2.09) LOW But it states this underneath-
"To maximize the negative predictive value for the purpose of ruling out DVT or PE, a cutoff value of less than 1.0 is used.
A D-Dimer of less than 1.0 and otherwise normal patient history equals a low probability of DVT or PE. At levels below 1.0 the negative predictive value for DVT and PE approaches 100%.
Conversely, a value of 1.0 or greater cannot be used for the diagnosis of DVT or PE without the use of radiological procedures. IF a D-Dimer is great than 1.0, the investigation should be continued as clinically indicated."
Troponin I 0.00--(0-0.3)
Glucose 99--(70-99) Very high?
Bun 8--(7-22)
Creatinine 0.9--(0.5-1.3)
Bun/Creat 8.9--(8-27)
Sodium 142--(136-147)
Potassium 3.5--(3.6-5.3) LOW...
Chloride 107--(98-110)
CO2 Content 24--(22-34)
Anion Gap 11--(2-12)
Calc Osmol 281--(269-297)
Calcium 9.8--(8.7-10.7)
T Bili 0.5--(0.1-1.2)
ALK Phos 65--(30-128)
SGPT (ALT) 58--(5-47) HIGH again?
SGOT (AST) 36--(5-40) High normal
Total Protein 8.0--(6-8.4)
Albumin 4.7--(3.3-5.1)
Globulin 3.3--(1.8-4.2)
A/G Ratio 1.4--(1.0-2.5)
WBC 5.5--(3.8-10) Best I've ever seen my counts
RBC 4.95--(3.88-5.11)
HGB 14.1--(11.5-15.7)
HCT 40.8--(36.3-47%)
MCV 82.4--(84-101.1) LOW again
MCH 28.5--(27-34)
MCHC 34.6--(30.5-35)
RDW 12.5--(11-15.5)
PLT 256--(130-400)
MPV 10.4--(8-11.1)
Neutrophil# 2.83--(1.6-6.7)
Lymphocyte# 2.1--(0.9-3.1)
Monocyte# 0.34--(0.11-1.0)
Eosinophil# 0.2--(0.0-0.5)
Basophil# 0.0--(0.0-0.2)
Neutrophil% 51.7--(43.6-74.5)
Lymphocyte% 37.6--(15.5-44.5)
Monocyte% 6.2--(3.6-12)
Eosinophil% 3.8--(0-6) First time I've seen this normal in 2-3 years.
Basophil% 0.7--(0-2)
Chest X Ray at ER
CLINICAL DATA: Chest Pain
TWO-VIEW CHEST
History: A 24-year-old female with chest pain.
Comparison Studies: None
Findings: The lungs are free of consolidation, congestion, or effusions. The cardiac silhouette is not enlarged. There are no hilar or mediastinal abnormalities.
IMPRESSION No acute pulmonary disease.
The elevated ALT is interesting. That means my ALT was elevated for the entire month of December. It hasn't been checked since then, so I don't know if it's still elevated. I will definitely be bringing this up to Dr. L. My research into ALT tells me that unlike some of the other liver indicators which might be a metabolic problem somewhere else down the line, ALT specifically means damage or inflammation in the liver. The cells die and then leak into the bloodstream. Obviously there is some cell death in everyone, since the range is 5-47. Now it doesn't mean its serious, but the fact that I don't drink alcohol, take OTC pain pills or prescription drugs tells me it needs investigated further. Now if it's not elevated anymore, then I'll just assume it was from the DMSA and move on. But if it's still elevated now, then I might refer myself to another doc. I just like to make sure everything is clear here. I'm 24 years old and certainly want to keep my liver healthy as long as possible! I've seen a few medical websites that say celiac can cause high ALT.
The low potassium doesn't surprise me. Well actually it does a little because I was actively trying to raise it then. And low potassium can cause chest pains, so I might have gone to the ER because of low K! haha That makes me laugh a little inside.
The high glucose worries me. My last fasting blood draw in March was creeping up into the 90's and I certainly don't need diabetes to worry about on top of everything else.
In other news, the itching has been back. Not as severe as it used to be, but I am worried it will continue to get worse. It's the same spots as before...
Here's all of the results. Remember I went in there with chest pains, so they did all the cardiac and blood clot tests. I know nothing about those to be honest.
December 29, 2008
PT TEST 10.7--(9-12)
INR 1.1--(0.9-1.2)
PTT TEST 28.7--(20-35 seconds)
D-Dimer 0.51--(0.54-2.09) LOW But it states this underneath-
"To maximize the negative predictive value for the purpose of ruling out DVT or PE, a cutoff value of less than 1.0 is used.
A D-Dimer of less than 1.0 and otherwise normal patient history equals a low probability of DVT or PE. At levels below 1.0 the negative predictive value for DVT and PE approaches 100%.
Conversely, a value of 1.0 or greater cannot be used for the diagnosis of DVT or PE without the use of radiological procedures. IF a D-Dimer is great than 1.0, the investigation should be continued as clinically indicated."
Troponin I 0.00--(0-0.3)
Glucose 99--(70-99) Very high?
Bun 8--(7-22)
Creatinine 0.9--(0.5-1.3)
Bun/Creat 8.9--(8-27)
Sodium 142--(136-147)
Potassium 3.5--(3.6-5.3) LOW...
Chloride 107--(98-110)
CO2 Content 24--(22-34)
Anion Gap 11--(2-12)
Calc Osmol 281--(269-297)
Calcium 9.8--(8.7-10.7)
T Bili 0.5--(0.1-1.2)
ALK Phos 65--(30-128)
SGPT (ALT) 58--(5-47) HIGH again?
SGOT (AST) 36--(5-40) High normal
Total Protein 8.0--(6-8.4)
Albumin 4.7--(3.3-5.1)
Globulin 3.3--(1.8-4.2)
A/G Ratio 1.4--(1.0-2.5)
WBC 5.5--(3.8-10) Best I've ever seen my counts
RBC 4.95--(3.88-5.11)
HGB 14.1--(11.5-15.7)
HCT 40.8--(36.3-47%)
MCV 82.4--(84-101.1) LOW again
MCH 28.5--(27-34)
MCHC 34.6--(30.5-35)
RDW 12.5--(11-15.5)
PLT 256--(130-400)
MPV 10.4--(8-11.1)
Neutrophil# 2.83--(1.6-6.7)
Lymphocyte# 2.1--(0.9-3.1)
Monocyte# 0.34--(0.11-1.0)
Eosinophil# 0.2--(0.0-0.5)
Basophil# 0.0--(0.0-0.2)
Neutrophil% 51.7--(43.6-74.5)
Lymphocyte% 37.6--(15.5-44.5)
Monocyte% 6.2--(3.6-12)
Eosinophil% 3.8--(0-6) First time I've seen this normal in 2-3 years.
Basophil% 0.7--(0-2)
Chest X Ray at ER
CLINICAL DATA: Chest Pain
TWO-VIEW CHEST
History: A 24-year-old female with chest pain.
Comparison Studies: None
Findings: The lungs are free of consolidation, congestion, or effusions. The cardiac silhouette is not enlarged. There are no hilar or mediastinal abnormalities.
IMPRESSION No acute pulmonary disease.
The elevated ALT is interesting. That means my ALT was elevated for the entire month of December. It hasn't been checked since then, so I don't know if it's still elevated. I will definitely be bringing this up to Dr. L. My research into ALT tells me that unlike some of the other liver indicators which might be a metabolic problem somewhere else down the line, ALT specifically means damage or inflammation in the liver. The cells die and then leak into the bloodstream. Obviously there is some cell death in everyone, since the range is 5-47. Now it doesn't mean its serious, but the fact that I don't drink alcohol, take OTC pain pills or prescription drugs tells me it needs investigated further. Now if it's not elevated anymore, then I'll just assume it was from the DMSA and move on. But if it's still elevated now, then I might refer myself to another doc. I just like to make sure everything is clear here. I'm 24 years old and certainly want to keep my liver healthy as long as possible! I've seen a few medical websites that say celiac can cause high ALT.
The low potassium doesn't surprise me. Well actually it does a little because I was actively trying to raise it then. And low potassium can cause chest pains, so I might have gone to the ER because of low K! haha That makes me laugh a little inside.
The high glucose worries me. My last fasting blood draw in March was creeping up into the 90's and I certainly don't need diabetes to worry about on top of everything else.
In other news, the itching has been back. Not as severe as it used to be, but I am worried it will continue to get worse. It's the same spots as before...
The Journey Continues...
Here is My story-Part 3!
All eight amalgams were removed in September '08 and I began to chelate with low dose DMSA following Dr. Cutler's frequent dose protocol. I didn't realize that EDTA, cilantro, challenge tests and chlorella were dangerous before. I no longer recommend them to anyone. My hair started to grow back within a few days of chelating with DMSA.
Unfortunately during my 8th round of chelation in October '08 I crashed. I don't know if it was the chelation, a mercury dump or it was just destined to happen. I began to get very itchy. It started off with hives and then led to skin itchiness, which completely controlled my life. This went on for 2-3 months. Finally I started to lose weight/night sweats and went to a PCP in the area. She told me I had swollen lymph nodes near my collar bone and was quite concerned about me. She did the standard basic blood work and my TSH came back undetectable. The PCP was convinced I had a hyperthyroid and sent me for testing. However I refused to undergo the radioactive scan/uptake test. I did the ultrasound which came back completely normal. More blood work actually suggested secondary hypothyroid because I had low FT3/FT4. She completely dismissed this and thinks TSH is the know all for the thyroid. Worthless, useless doctor and she didn't really want to hear about it anymore and just referred me to an endo. Yes she was a DO btw. Some people think these types of docs are wonderful... Well in my experience they are terrible too.
Dr. Goldstein wasn't sure about all of this and he told me to see an endo as well. During this time, the itching was just so bad. It would make me shake. Some blood work showed an elevated ALT , low neutrophils and WBC's. This is when I completely discontinued chelation and decided my body needed to rest.
Over the course of the next few weeks, the itchiness got better on its own. I developed severe chest pains in the middle of December which were terrible too. At first it was quite sharp, but then became this dull ache that last for several weeks. A trip to the ER did not reveal much of anything. They told me I pulled my chest wall. I just recently got the labs from that ER visit and it shows my potassium was low, which can cause heart problems and my ALT was elevated again. None of this was ever mentioned to me when I was there. Apparently they didn't think it was important... The lesson here to ALWAYS GET COPIES OF YOUR BLOOD WORK!
While waiting for the endo appointment to arrive, I started looking online for more answers. I needed help and knew the endo would be a waste of my time. I just wanted to be as prepared as possible for the appointment with a stack of labs in hand, so I didn't have to come back again. Thankfully I found a few yahoo groups and a hormone support group with other people suffering from the same symptoms as me! They were able to tell me which labs needed checked especially since I was dx with diabetes insipidus. During all of this, I was recommended a doctor about 5 hours from me and after some thinking decided to go see him.
It was the best decision I ever made in my life. After all of this craziness, I think I might actually get some help. No offense to Dr. G but he never helped me in the entire year's time I saw him and wasted that entire year chasing bullshit. I was never given florinef even though he saw my low aldosterone numbers. To say I am disappointed is an understatement. The new doctor questions whether I really have Diabetes Insipidus and that it may only be low aldosterone symptoms. He has diagnosed me with adrenal insufficiency (the cause we are still investigating), low aldosterone, and hypothyroid.
I just started on florinef and will slowly raise it over the next few weeks. I can't wait to see what it does for me! Maybe I can handle the hot weather again. Once I reach 1 tab of Florinef, I will begin 30mg of HC. After I am stable on Florinef and HC, then we will be rechecking my thyroid numbers to see if I will need Armour too. I have a feeling that I will but, who knows?
Things I am still investigating and will be battling:
--Why has my ALT been elevated?
--Why does my TSH fluctuate so much?
--HC/Florinef dosing--trial and error
--What is causing the adrenal insufficiency? Enzyme deficiency? pituitary?
--Can I cure all of this with chelation?
All eight amalgams were removed in September '08 and I began to chelate with low dose DMSA following Dr. Cutler's frequent dose protocol. I didn't realize that EDTA, cilantro, challenge tests and chlorella were dangerous before. I no longer recommend them to anyone. My hair started to grow back within a few days of chelating with DMSA.
Unfortunately during my 8th round of chelation in October '08 I crashed. I don't know if it was the chelation, a mercury dump or it was just destined to happen. I began to get very itchy. It started off with hives and then led to skin itchiness, which completely controlled my life. This went on for 2-3 months. Finally I started to lose weight/night sweats and went to a PCP in the area. She told me I had swollen lymph nodes near my collar bone and was quite concerned about me. She did the standard basic blood work and my TSH came back undetectable. The PCP was convinced I had a hyperthyroid and sent me for testing. However I refused to undergo the radioactive scan/uptake test. I did the ultrasound which came back completely normal. More blood work actually suggested secondary hypothyroid because I had low FT3/FT4. She completely dismissed this and thinks TSH is the know all for the thyroid. Worthless, useless doctor and she didn't really want to hear about it anymore and just referred me to an endo. Yes she was a DO btw. Some people think these types of docs are wonderful... Well in my experience they are terrible too.
Dr. Goldstein wasn't sure about all of this and he told me to see an endo as well. During this time, the itching was just so bad. It would make me shake. Some blood work showed an elevated ALT , low neutrophils and WBC's. This is when I completely discontinued chelation and decided my body needed to rest.
Over the course of the next few weeks, the itchiness got better on its own. I developed severe chest pains in the middle of December which were terrible too. At first it was quite sharp, but then became this dull ache that last for several weeks. A trip to the ER did not reveal much of anything. They told me I pulled my chest wall. I just recently got the labs from that ER visit and it shows my potassium was low, which can cause heart problems and my ALT was elevated again. None of this was ever mentioned to me when I was there. Apparently they didn't think it was important... The lesson here to ALWAYS GET COPIES OF YOUR BLOOD WORK!
While waiting for the endo appointment to arrive, I started looking online for more answers. I needed help and knew the endo would be a waste of my time. I just wanted to be as prepared as possible for the appointment with a stack of labs in hand, so I didn't have to come back again. Thankfully I found a few yahoo groups and a hormone support group with other people suffering from the same symptoms as me! They were able to tell me which labs needed checked especially since I was dx with diabetes insipidus. During all of this, I was recommended a doctor about 5 hours from me and after some thinking decided to go see him.
It was the best decision I ever made in my life. After all of this craziness, I think I might actually get some help. No offense to Dr. G but he never helped me in the entire year's time I saw him and wasted that entire year chasing bullshit. I was never given florinef even though he saw my low aldosterone numbers. To say I am disappointed is an understatement. The new doctor questions whether I really have Diabetes Insipidus and that it may only be low aldosterone symptoms. He has diagnosed me with adrenal insufficiency (the cause we are still investigating), low aldosterone, and hypothyroid.
I just started on florinef and will slowly raise it over the next few weeks. I can't wait to see what it does for me! Maybe I can handle the hot weather again. Once I reach 1 tab of Florinef, I will begin 30mg of HC. After I am stable on Florinef and HC, then we will be rechecking my thyroid numbers to see if I will need Armour too. I have a feeling that I will but, who knows?
Things I am still investigating and will be battling:
--Why has my ALT been elevated?
--Why does my TSH fluctuate so much?
--HC/Florinef dosing--trial and error
--What is causing the adrenal insufficiency? Enzyme deficiency? pituitary?
--Can I cure all of this with chelation?
Friday, April 3, 2009
Florinef Is Doing...Something
Day 2 of 1/4 tab of florinef (well the generic) and it is doing something just not enough of it. haha! I will definitely need more and am looking forward to the increase in 2 weeks. Last night I woke up (like always) but I wiggled my hands, feet and they were not as swollen as they usually are at that time. My face was not as swollen this morning either. That's really good.
However, I still feel dehydrated, very thirsty etc. Last night before bed, my urine looked like water. I really hope I don't have diabetes insipidus and that the florinef will take away all of these symptoms (clear urine, desert mouth, peeing a lot). I haven't had any low potassium symptoms...yet, but I am paying close attention to my muscles and heart. The first signs of them, I will be running to Labcorp for more blood tests.
That's it for today. I slept 9 hours last night and I actually feel pretty good. I might have been able to skip my morning coffee...My husband said he slept better and I'm like maybe it's because I slept better? We'll see what happens tonight!
However, I still feel dehydrated, very thirsty etc. Last night before bed, my urine looked like water. I really hope I don't have diabetes insipidus and that the florinef will take away all of these symptoms (clear urine, desert mouth, peeing a lot). I haven't had any low potassium symptoms...yet, but I am paying close attention to my muscles and heart. The first signs of them, I will be running to Labcorp for more blood tests.
That's it for today. I slept 9 hours last night and I actually feel pretty good. I might have been able to skip my morning coffee...My husband said he slept better and I'm like maybe it's because I slept better? We'll see what happens tonight!
Thursday, April 2, 2009
New Doctor: The First Appointment
Sorry I've been away for a little bit. My husband and I traveled out to the eastern side of the state to see a doctor that was recommended to me. The trip was a lot worse than we were anticipating, but we made it there and back in 1 piece.
I am very happy with the new doctor. He isn't convinced that I have a pituitary disorder and has diagnosed me with primary adrenal insufficiency, hypothyroidism and low aldosterone. I'm not really sure how I feel about it, but I really don't care anymore. I just want to FEEL better.
Honestly I am just too tired right now to rewrite my thoughts about the doctor, so I am just copy/pasting my post from the Hormone Support group. We went target shooting today and I am wiped out.
"He wants to check for adrenal antibodies and wants to see rule out elevated 17-OH-progesterone. The high saliva progesterone levels piqued his interest and says I may be deficient in the enzymes that create cortisol. He said the saliva test might be picking up this form of progesterone. Typically though a woman would have increased hair growth with this condition, but he just wanted to rule it out. It sounds rather interesting, so I say why not check it?
He also wants to investigate why my potassium is chronically low even with a good diet with fruits/vegetables. He said he might send me to a nephrologist to investigate this further, but wanted to see what happens on florinef. He told me he has seen patients potassium levels actually go UP on florinef, which he admits doesn't really make sense. I have a blood sheet ready if I start to show symptoms of low potassium and wants me to check this immediately if that happens to see what my electrolytes are doing. He tells patients that foods are the best way to get potassium and that's what he usually recommends.
Once the blood work is done, I am to start on 1/4 tab of florinef and go from there. He told me to not raise it any faster than 1/4 tab every 2 weeks. At 2 weeks take 1/4 tab twice a day. Ultimately he told me once I hit 1 tab, to start on the 30mg of HC. 10-10-5-5 dosing schedule. He said the bedtime dose may prove to be important for me since I wake up every single night (around the same time). He said he starts everyone at 30mg now because at lower doses he has seen people crash very hard and says it's better to have too much HC for a short period of time, than being under treated. He says, that my ACTH will be suppressed with this dose and that we'll have to watch my DHEA and other hormones. He told me the reason why my salt wasting symptoms got worse on 20mg HC was because my ACTH was suppressed causing the already low aldosterone to fall even further.
This doctor was quite knowledgeable. He certainly contradicts some of the things that Chris from the Hormone Support group goes by (low potassium, low sodium, low renin means secondary AI, ACTH<50 is secondary AI), but at this point I'm just glad to have a doc prescribe me florinef. I might have been able to get my other doc to do it, but I really trust Dr. L. He is only an email away too, which is just awesome!
This doc loves unique, complicated and bizarre cases. It seems like my case was pretty easy for him to be honest. I had 2 saliva tests from Diagnos-Tech Inc and that was enough for him. The results were almost identical and he felt pretty strongly that I was having serious adrenal problems (combined with my symptoms)."
Today I started on the 1/4 tab of Florinef immediately following the blood work. I don't feel much of anything--good or bad. Still thirsty, still peeing a lot and still feeling lightheaded when I stand up. I definitely think I'll need a full tab to feel better, but I intend to follow his instructions exactly.
I am very happy with the new doctor. He isn't convinced that I have a pituitary disorder and has diagnosed me with primary adrenal insufficiency, hypothyroidism and low aldosterone. I'm not really sure how I feel about it, but I really don't care anymore. I just want to FEEL better.
Honestly I am just too tired right now to rewrite my thoughts about the doctor, so I am just copy/pasting my post from the Hormone Support group. We went target shooting today and I am wiped out.
"He wants to check for adrenal antibodies and wants to see rule out elevated 17-OH-progesterone. The high saliva progesterone levels piqued his interest and says I may be deficient in the enzymes that create cortisol. He said the saliva test might be picking up this form of progesterone. Typically though a woman would have increased hair growth with this condition, but he just wanted to rule it out. It sounds rather interesting, so I say why not check it?
He also wants to investigate why my potassium is chronically low even with a good diet with fruits/vegetables. He said he might send me to a nephrologist to investigate this further, but wanted to see what happens on florinef. He told me he has seen patients potassium levels actually go UP on florinef, which he admits doesn't really make sense. I have a blood sheet ready if I start to show symptoms of low potassium and wants me to check this immediately if that happens to see what my electrolytes are doing. He tells patients that foods are the best way to get potassium and that's what he usually recommends.
Once the blood work is done, I am to start on 1/4 tab of florinef and go from there. He told me to not raise it any faster than 1/4 tab every 2 weeks. At 2 weeks take 1/4 tab twice a day. Ultimately he told me once I hit 1 tab, to start on the 30mg of HC. 10-10-5-5 dosing schedule. He said the bedtime dose may prove to be important for me since I wake up every single night (around the same time). He said he starts everyone at 30mg now because at lower doses he has seen people crash very hard and says it's better to have too much HC for a short period of time, than being under treated. He says, that my ACTH will be suppressed with this dose and that we'll have to watch my DHEA and other hormones. He told me the reason why my salt wasting symptoms got worse on 20mg HC was because my ACTH was suppressed causing the already low aldosterone to fall even further.
This doctor was quite knowledgeable. He certainly contradicts some of the things that Chris from the Hormone Support group goes by (low potassium, low sodium, low renin means secondary AI, ACTH<50 is secondary AI), but at this point I'm just glad to have a doc prescribe me florinef. I might have been able to get my other doc to do it, but I really trust Dr. L. He is only an email away too, which is just awesome!
This doc loves unique, complicated and bizarre cases. It seems like my case was pretty easy for him to be honest. I had 2 saliva tests from Diagnos-Tech Inc and that was enough for him. The results were almost identical and he felt pretty strongly that I was having serious adrenal problems (combined with my symptoms)."
Today I started on the 1/4 tab of Florinef immediately following the blood work. I don't feel much of anything--good or bad. Still thirsty, still peeing a lot and still feeling lightheaded when I stand up. I definitely think I'll need a full tab to feel better, but I intend to follow his instructions exactly.
Friday, March 27, 2009
DI In A Bad Phase?
This is somewhat embarrassing, but I almost peed myself this week, TWICE! The first time we went for a walk at the park and I went before leaving the house. We got to the park and my bladder filled up so fast. I was ready to pee in the woods, but there wasn't enough cover. haha We had to cut our walk short, but I walked 2 miles on a full bladder...I still don't know how I did it.
The other time was when we went grocery shopping a few nights ago. I had to go so bad when we got there, then about 5 minutes after we pulled away, I had to go again. We don't spend a lot of time in the store, so it made no sense that I had to go again.
These two near accidents has me taking my DDAVP again for the time being. It's helped a lot. I just wish I could understand why this happens to me. Everytime I take a spray, I have to cross off a dose because each bottle only has 50 full dose sprays but there's always left over fluid. I put the date on each dose. I skipped almost all of February, but january I took it every single day. March was sort of weird. Some weeks I took it others I didn't. I have a feeling that April I will be taking it every day.
Since my DI is bad, I wonder what my TSH is doing. I can't wait to see what this new doc says about my crazy labs. I was told he loves puzzles and is interested in complex cases. This gives me hope. :-)
Today I feel pretty good overall. I am tired because we had to get up early, but aside from the lack of sleep, I'm thirsty but good.
The other time was when we went grocery shopping a few nights ago. I had to go so bad when we got there, then about 5 minutes after we pulled away, I had to go again. We don't spend a lot of time in the store, so it made no sense that I had to go again.
These two near accidents has me taking my DDAVP again for the time being. It's helped a lot. I just wish I could understand why this happens to me. Everytime I take a spray, I have to cross off a dose because each bottle only has 50 full dose sprays but there's always left over fluid. I put the date on each dose. I skipped almost all of February, but january I took it every single day. March was sort of weird. Some weeks I took it others I didn't. I have a feeling that April I will be taking it every day.
Since my DI is bad, I wonder what my TSH is doing. I can't wait to see what this new doc says about my crazy labs. I was told he loves puzzles and is interested in complex cases. This gives me hope. :-)
Today I feel pretty good overall. I am tired because we had to get up early, but aside from the lack of sleep, I'm thirsty but good.
Thursday, March 26, 2009
I Already Feel Less Bloated
I'm not great, but I can already tell a difference in the bloat. Last night though was quite hellish to say the least. I woke up like 5 times having major night sweats. I don't know if that was my body's way of shedding the extra water or what.
I was dying of heat for most of the night and had to kick the cat away from my feet and move my husband over to the other side of the bed! haha I was burning up and dying of thirst. I gulped down 16 ounces of water in about 10 seconds and was still desert mouth (that's what I call it). Obviously this is something OTHER than diabetes insipidus because I took my meds at 11:30 PM last night. I went to bed pretty late last night because I was working, but the meds should have last well through out the night and into the today.
When I woke up my pee was a normal dark color so it is working, but it didn't stop the dying of thirst feeling I'm getting. I am drinking more water right now to see when my thirst goes away. Obviously my body wants the water, so I'm drinking to see how much it wants.
The constant battling of dehydration is so damned irritating. I don't know anyone else that goes through this and it really pisses me off.
I lost 4 pounds from yesterday. My legs feel thinner. I can see more definition in the muscles, so the salt is cut...for now.
I was dying of heat for most of the night and had to kick the cat away from my feet and move my husband over to the other side of the bed! haha I was burning up and dying of thirst. I gulped down 16 ounces of water in about 10 seconds and was still desert mouth (that's what I call it). Obviously this is something OTHER than diabetes insipidus because I took my meds at 11:30 PM last night. I went to bed pretty late last night because I was working, but the meds should have last well through out the night and into the today.
When I woke up my pee was a normal dark color so it is working, but it didn't stop the dying of thirst feeling I'm getting. I am drinking more water right now to see when my thirst goes away. Obviously my body wants the water, so I'm drinking to see how much it wants.
The constant battling of dehydration is so damned irritating. I don't know anyone else that goes through this and it really pisses me off.
I lost 4 pounds from yesterday. My legs feel thinner. I can see more definition in the muscles, so the salt is cut...for now.
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