It's no big secret that I've been rather frustrated these past months. Looking at my posts, I haven't exactly been in a good mood. Sorry about that folks. I tend to use this blog as a way to vent my frustrations because I don't have any close friends to talk to about all of this.
Emotionally I have been a wreck, but thanks to some EFT counseling I am doing much much better. I'm not 100% better, but day-to-day my anxiety has made a huge improvement. I also think getting off the Armour was helpful as it was converting to RT3, essentially making me more and more hypo. Anxiety and depression is a huge hypothyroid symptom.
Now that yet another year rolls around and I still have not found a fix for all of my problems, I need to stop and figure out what to do next. Do I just give up and realize that I will always have this heart problem? Do I just start to chelate again? Do I keep searching for more answers and risk the chance of being in the exact same spot next year at this time?
I thought going to this new EP was going to be "the breakthrough" like with so many other doctors and yet, here I am, looking back realizing how much of a waste it was. I emailed Dinet.org and told them I was not impressed at all with this doctor. He's no more a POTS expert than my regular primary care doctor. He was listed on their website as a doctor who dealt specifically with POTS.
Here's the direction I am heading next and this will likely be what I'll be dealing with into the next year.
What if the "POTS" was simply a mineral deficiency? I have been quite deficient in Vitamin D, ferritin and Vitamin B12 at certain points in my life. What if there are other more obscure mineral deficiencies that I haven't even tested. With all the natural doctors I've been to, none of them have done a comprehensive nutritional panel on me. Does anyone else see a problem with this?
My wonderful husband who spends HOURS researching for both of us, came across this very interesting post from a lady on Dinet.org. In this post, she was found to have a severe vitamin B1 deficiency. She was placed on a specific fat soluble type of vitamin B1 and noticed a huge increase in symptoms for the first few weeks. Then after that, she was practically CURED of POTS.
About 2 weeks ago I started using this cream and noticed a significant increase in my symptoms including gastrointestinal. I haven't felt this bad during a winter month for as long as I can remember. It got so bad, that I discontinued the cream about 4 days ago and oddly enough I am feeling a touch better... Now I am looking to get these vitamins tested, so I can decide what I need to do from here. Her post was very encouraging because she now holds a busy schedule/job.
I am now looking at yet ANOTHER DOCTOR that looks specifically at nutrition and also prescribes bioidentical HRT. That's about as good as it gets in my opinion. I can't give up. I'm only 25 years old and if I ever wish to have a family, I've got to get this heart rate under control.
So there you have it. We'll see what this year brings. 2009 was probably one of the hardest on me emotionally. Lots of up's and down's, but I made it through!
Monday, December 28, 2009
Wednesday, December 23, 2009
NOOO!!!!
Today is a sad day in my world. I got my catecholamines back and they tell me absolutely nothing.
Epinephrine, U, 24hr 4 (0-32)
Norepinephrine, U, 24hr 27 (0-140)
Dompaine, Ur, 24hr 241 (65-610)
Yeah, so I guess I'm just doomed for the rest of my life like this? I mean this is unf$%#ingbelieveable to me. I hate to swear, but I have no life when I'm like this and sadly winter hasn't made me any better.
No one wants to help me unless I'm willing to take xanax or adderall and I'll be DAMNED if I take those stupid pills.
Epinephrine, U, 24hr 4 (0-32)
Norepinephrine, U, 24hr 27 (0-140)
Dompaine, Ur, 24hr 241 (65-610)
Yeah, so I guess I'm just doomed for the rest of my life like this? I mean this is unf$%#ingbelieveable to me. I hate to swear, but I have no life when I'm like this and sadly winter hasn't made me any better.
No one wants to help me unless I'm willing to take xanax or adderall and I'll be DAMNED if I take those stupid pills.
Tuesday, December 22, 2009
Tested My Catecholamines
On Sunday I collected my urine for a full 24 hours to see what my catecholamines are doing. Is this why I have POTS (Postural orthostatic tachycardia syndrome) ?
There are several different types of POTS. One is when your catecholamines are high and one where they are low. I suspect that mine are high, but we'll just have to wait and see what the test shows. I doubt I'll see the results until after Christmas, but it may be as soon as tomorrow.
If the results do show something, I'll be contacting my EP. He's a total idiot and should have ordered these HIMSELF or collected them during the damn tilt table test like what most POTS "specialists" are supposed to do. The only reason why he was a "specialist" is because he's HEARD OF POTS. Whip dee doo! I'm going to contact Dinet.org and tell them that he did not do any diagnostic testing other than the tilt-table. I guess he's a good doctor if you don't mind taking prozac, xanax, and adderall! Then again if you were on all 3 of those drugs, I doubt you'd care about much of anything.
There are several different types of POTS. One is when your catecholamines are high and one where they are low. I suspect that mine are high, but we'll just have to wait and see what the test shows. I doubt I'll see the results until after Christmas, but it may be as soon as tomorrow.
If the results do show something, I'll be contacting my EP. He's a total idiot and should have ordered these HIMSELF or collected them during the damn tilt table test like what most POTS "specialists" are supposed to do. The only reason why he was a "specialist" is because he's HEARD OF POTS. Whip dee doo! I'm going to contact Dinet.org and tell them that he did not do any diagnostic testing other than the tilt-table. I guess he's a good doctor if you don't mind taking prozac, xanax, and adderall! Then again if you were on all 3 of those drugs, I doubt you'd care about much of anything.
Monday, December 14, 2009
Stomach is Hurting WHY?
My stomach has been out of control. It always hurts anymore at least a little bit and I've been getting sick a lot. I'm always sick first thing in the morning and even sometimes like an hour afterward. This has been getting worse since going gluten free, egg free, strawberry, tomato and dairy-free (unless it's the raw milk).
This is what I ate today in no particular order:
Whole Chicken leg with no seasoning or sauce
1/2 cup of ground beef with salt
Rice with butter/salt
Mixed veggies with salt
Celery sticks with peanut butter
Enjoy Life chocolate chips hehehe
Chai tea (red tea) with 3 tbls of raw milk
1/2 cup of coffee
2 Oranges
1 banana
Where am I going wrong here? Why is my stomach hurting tonight. Why am I bloated?! It is really starting to drive me crazy because I just can't figure this out now. I had quite a few high carb foods today, but I just don't know. I'm not itchy tonight though, so go figure?! I'm thinking about doing the stool test from Enterolab to see what is going on with my stomach. They can test for a whole bunch of things. I just don't have the money for it, but when I do, I think it's a sure thing for me.
This is what I ate today in no particular order:
Whole Chicken leg with no seasoning or sauce
1/2 cup of ground beef with salt
Rice with butter/salt
Mixed veggies with salt
Celery sticks with peanut butter
Enjoy Life chocolate chips hehehe
Chai tea (red tea) with 3 tbls of raw milk
1/2 cup of coffee
2 Oranges
1 banana
Where am I going wrong here? Why is my stomach hurting tonight. Why am I bloated?! It is really starting to drive me crazy because I just can't figure this out now. I had quite a few high carb foods today, but I just don't know. I'm not itchy tonight though, so go figure?! I'm thinking about doing the stool test from Enterolab to see what is going on with my stomach. They can test for a whole bunch of things. I just don't have the money for it, but when I do, I think it's a sure thing for me.
Saturday, December 12, 2009
I think I have a lot of food allergies
I really think this is part of my problem and why I'm just not feeling any better no matter what I do. I know that there is something still bothering me because that DAMN itchiness on my legs has NEVER gone away. I am soo sick of it and it gets so bad sometimes that I have to take zyrtec. There is no way around it.
Looking at my food allergy results there is one thing that I haven't cut out yet and that is Baker's Yeast. My cousin, Chelle told me that having an allergy to Baker's Yeast can be just as bad as an allergy to wheat, gluten, eggs or even dairy. So I decided to start doing my own research and she is absolutely correct!
60-85% of people with Crohn's Disease will test positive to Baker's Yeast antibodies. The medical term for antibodies to Baker's Yeast is anti-Saccharomyces cerevisiae mannan antibodies. It is thought that your body starts to confuse your body's natural yeast for this Saccharomyces cerevisiae mannan and that's why you get Crohn's Diease...In addition to this scary find, one of the companies (Enterolab) that does genetic testing for Celiac also says that if you test positive for Baker's Yeast that there is high likelihood you have Crohn's Disease....Great so that's two reputable labs/medical studies that are saying the same thing. Obviously I need to stop eating Baker's Yeast. Now the interesting thing on my test is that I am NOT allergic to Brewer's Yeast. That makes things a lot easier as Brewer's Yeast and Baker's Yeast are used in a ton of foods.
Here's a list that includes BOTH brewers and baker's yeast foods.
http://www.allergy-details.com/106-foods-contain-yeast
Even though I'm already gluten free, I was still making GF bread for us that has yeast in it, so I need to cut that out for sure. I'll have to do some more research to see if I need to cut out all those foods on that list above. Even though I tested okay for Brewer's Yeast should I still cut it out too? I have no idea right now. I am still trying to sift through all this information.
Credit goes to this lovely little blog for a lot of the information in my post.
http://mrsedsresearchandrecipes.blogspot.com/2009/05/bakers-yeast-allergy-asca-lesser-known.html
Looking at my food allergy results there is one thing that I haven't cut out yet and that is Baker's Yeast. My cousin, Chelle told me that having an allergy to Baker's Yeast can be just as bad as an allergy to wheat, gluten, eggs or even dairy. So I decided to start doing my own research and she is absolutely correct!
60-85% of people with Crohn's Disease will test positive to Baker's Yeast antibodies. The medical term for antibodies to Baker's Yeast is anti-Saccharomyces cerevisiae mannan antibodies. It is thought that your body starts to confuse your body's natural yeast for this Saccharomyces cerevisiae mannan and that's why you get Crohn's Diease...In addition to this scary find, one of the companies (Enterolab) that does genetic testing for Celiac also says that if you test positive for Baker's Yeast that there is high likelihood you have Crohn's Disease....Great so that's two reputable labs/medical studies that are saying the same thing. Obviously I need to stop eating Baker's Yeast. Now the interesting thing on my test is that I am NOT allergic to Brewer's Yeast. That makes things a lot easier as Brewer's Yeast and Baker's Yeast are used in a ton of foods.
Here's a list that includes BOTH brewers and baker's yeast foods.
http://www.allergy-details.com/106-foods-contain-yeast
Even though I'm already gluten free, I was still making GF bread for us that has yeast in it, so I need to cut that out for sure. I'll have to do some more research to see if I need to cut out all those foods on that list above. Even though I tested okay for Brewer's Yeast should I still cut it out too? I have no idea right now. I am still trying to sift through all this information.
Credit goes to this lovely little blog for a lot of the information in my post.
http://mrsedsresearchandrecipes.blogspot.com/2009/05/bakers-yeast-allergy-asca-lesser-known.html
Thursday, December 10, 2009
Yep I Have RT3 Dominance
Well it is official now for sure. I have RT3 dominance even WITHOUT armour. NO wonder I felt so terrible on that crap. This is why doctors need to test this before you even go on Armour no matter what your numbers look like! If your doctor is not testing Reverse T3 before putting you on Armour, you need to set them straight so you don't suffer for months like I have.
There were my labs-
TSH 1.590 (0.450-4.50)
FT3 3.2 (2.0-4.4)
FT4 1.32 (0.82-1.77)
Now my numbers here don't look so bad. Most docs would send me on my way or say that a little bit of armour might do the trick....But look at my Reverse T3!
RT3 362 (90-350) High
...And there it is. My problem. My body can't convert it's own T4 into T3 so how can I expect it to convert Armour? Essentially I am functionally Hypothyroid. My thyroid is making enough hormone, but a lot of RT3 is bound in the T3 receptor sites, which does not allow T3 into the receptors to do their job. I am running around hypothyroid WITH thyroid hormone in my blood! The treatment for this is to go on T3 only. Every doctor has their own method.
This doctor wants me to start off with 10mcg of T3/day, dosing it 5mcg in the AM, then 5mcg at dinner. I am supposed to work my way up pretty quickly to 20mcg, dosing it 10mcg in the AM, then 10mcg at dinner time. I have not started this yet, but hope to do so soon.
I'll be sure to keep everyone posted!
There were my labs-
TSH 1.590 (0.450-4.50)
FT3 3.2 (2.0-4.4)
FT4 1.32 (0.82-1.77)
Now my numbers here don't look so bad. Most docs would send me on my way or say that a little bit of armour might do the trick....But look at my Reverse T3!
RT3 362 (90-350) High
...And there it is. My problem. My body can't convert it's own T4 into T3 so how can I expect it to convert Armour? Essentially I am functionally Hypothyroid. My thyroid is making enough hormone, but a lot of RT3 is bound in the T3 receptor sites, which does not allow T3 into the receptors to do their job. I am running around hypothyroid WITH thyroid hormone in my blood! The treatment for this is to go on T3 only. Every doctor has their own method.
This doctor wants me to start off with 10mcg of T3/day, dosing it 5mcg in the AM, then 5mcg at dinner. I am supposed to work my way up pretty quickly to 20mcg, dosing it 10mcg in the AM, then 10mcg at dinner time. I have not started this yet, but hope to do so soon.
I'll be sure to keep everyone posted!
Wednesday, November 18, 2009
Lots of changes
No longer seeing that lady doctor. We made the journey back out to see the other doctor and got back today. I am pretty pleased with my treatment and have realized that no one is ever going to fix my heart problem. NO ONE. I can't get too upset about it and will just have to learn to deal with it for the rest of my life.
The EP told me to try a small dose of a beta blocker, so that's the next step. If this doesn't work, then I really am out of options and am SOL.
The hormone doctor has ordered me a whole bunch of new labs to get done since I just stopped the armour. I hate armour. It did absolutely nothing but make me feel even worse. I had daily headaches and just felt so blah on it. I don't know what my doc will do but I think I want to try a small dose of cytomel to see what happens.
I also saw another hormone doctor I used to see a long time ago and he thinks I have a reverse T3 problem. He does the labs a little different than most people and uses T3 rather than FT3 to calculate the ratio. I don't know who the hell is right anymore because everyone has their own unique method to this stuff!
I had my sex hormones tested and while the numbers look good, some people might say that I am "estrogen dominant" because my ratio isn't high enough. My hormone doctor doesn't like to see estrogen any lower than 150 and mine was 198. He said my progesterone was excellent at 19.9. I dunno about these ratio things...
So now I just continue on the HC and DHEA and get these new labs done to see what my thyroid is doing on its own. I've never had my RT3 checked when not on armour, so it will be interesting to see nonetheless.
That's all for now.
The EP told me to try a small dose of a beta blocker, so that's the next step. If this doesn't work, then I really am out of options and am SOL.
The hormone doctor has ordered me a whole bunch of new labs to get done since I just stopped the armour. I hate armour. It did absolutely nothing but make me feel even worse. I had daily headaches and just felt so blah on it. I don't know what my doc will do but I think I want to try a small dose of cytomel to see what happens.
I also saw another hormone doctor I used to see a long time ago and he thinks I have a reverse T3 problem. He does the labs a little different than most people and uses T3 rather than FT3 to calculate the ratio. I don't know who the hell is right anymore because everyone has their own unique method to this stuff!
I had my sex hormones tested and while the numbers look good, some people might say that I am "estrogen dominant" because my ratio isn't high enough. My hormone doctor doesn't like to see estrogen any lower than 150 and mine was 198. He said my progesterone was excellent at 19.9. I dunno about these ratio things...
So now I just continue on the HC and DHEA and get these new labs done to see what my thyroid is doing on its own. I've never had my RT3 checked when not on armour, so it will be interesting to see nonetheless.
That's all for now.
Thursday, October 15, 2009
New Doc Is Fired
I really thought that I'd be able to get some help from the new doctor. But after the fiasco they put me through yesterday and with how poorly the phone consult went, I am just moving on once again. There's no reason to waste my time with a doc who won't do anything for 6 weeks in between phone calls. She's not changing ANYTHING. I mean what the heck?
Yesterday I was supposed to have my phone consult and they called me 45 minutes late telling me they were going to be late. Oh really, you think? You are already 45 minutes late. They said it would be another 45 minutes. Well another HOUR goes by and I actually had plans last night and could not sit around any longer, so I canceled on them. They didn't seem apologetic or anything.
Well I get a phone call today out of the blue and it's the doctor. She's extremely difficult to talk to on the phone. There were moments of complete silence and I wasn't sure if I was supposed to say something or not. /shrug Basically she is blaming everything that is wrong with me on Epstein-Barr Virus. Oh yes. I love these psychotic doctors who do this. You give them one thing they can blame EVERYTHING on and that's what they do. Even though my antibodies for a recent infection are NEGATIVE, she told me that that is my problem and to take supplements to "knock the virus out". Uh hello I got EBV when I was 17, I don't think there's any knocking this thing out of me. In fact it's not possible because it stays in your body forever. The fact that my present antibodies were below the lowest detectable titer tells me that's really good. I was actually pretty happy to see that, but that's not enough for this lady.
She said that the thyroid labs were weird because "Oh did you take your thyroid meds before the test". Yeah dummy I told you that in the office and you said that's WHAT YOUR OFFICE RECOMMENDS. I mean am I going insane here or what!? My GOODNESS.
So I just nodded and agreed with everything she said because you cannot have a discussion with her on the phone. She is not a phone person at all. Basically she left it as I change absolutely nothing, I know nothing about what my thyroid is doing now and that my TSH is too low. [Oh great you are one of those types of doctors? Are you kidding me?]. I told her that my TSH has never been reliable and that we cannot go by that since it's been NON-DETECTABLE when I was not on any medication.
To say that today's phone consult went bad is a serious understatement. I'll probably just call them in a few weeks and say that I wasn't too happy and that's that. Why spend money on a doctor that is so difficult to work with? The phone conversation was so awkward and rigid.
I didn't get these feelings from her in the office, so that just shows you the first visit with a doc means nothing. Great I get to stay on 1 grain of armour for another 6 weeks! It's already been 6 weeks at this dose and it's just unbelievable to me. This lady was recommended by a very well-known doc I won't even mention here. I hope that my husband has better luck.
Yesterday I was supposed to have my phone consult and they called me 45 minutes late telling me they were going to be late. Oh really, you think? You are already 45 minutes late. They said it would be another 45 minutes. Well another HOUR goes by and I actually had plans last night and could not sit around any longer, so I canceled on them. They didn't seem apologetic or anything.
Well I get a phone call today out of the blue and it's the doctor. She's extremely difficult to talk to on the phone. There were moments of complete silence and I wasn't sure if I was supposed to say something or not. /shrug Basically she is blaming everything that is wrong with me on Epstein-Barr Virus. Oh yes. I love these psychotic doctors who do this. You give them one thing they can blame EVERYTHING on and that's what they do. Even though my antibodies for a recent infection are NEGATIVE, she told me that that is my problem and to take supplements to "knock the virus out". Uh hello I got EBV when I was 17, I don't think there's any knocking this thing out of me. In fact it's not possible because it stays in your body forever. The fact that my present antibodies were below the lowest detectable titer tells me that's really good. I was actually pretty happy to see that, but that's not enough for this lady.
She said that the thyroid labs were weird because "Oh did you take your thyroid meds before the test". Yeah dummy I told you that in the office and you said that's WHAT YOUR OFFICE RECOMMENDS. I mean am I going insane here or what!? My GOODNESS.
So I just nodded and agreed with everything she said because you cannot have a discussion with her on the phone. She is not a phone person at all. Basically she left it as I change absolutely nothing, I know nothing about what my thyroid is doing now and that my TSH is too low. [Oh great you are one of those types of doctors? Are you kidding me?]. I told her that my TSH has never been reliable and that we cannot go by that since it's been NON-DETECTABLE when I was not on any medication.
To say that today's phone consult went bad is a serious understatement. I'll probably just call them in a few weeks and say that I wasn't too happy and that's that. Why spend money on a doctor that is so difficult to work with? The phone conversation was so awkward and rigid.
I didn't get these feelings from her in the office, so that just shows you the first visit with a doc means nothing. Great I get to stay on 1 grain of armour for another 6 weeks! It's already been 6 weeks at this dose and it's just unbelievable to me. This lady was recommended by a very well-known doc I won't even mention here. I hope that my husband has better luck.
Tuesday, October 13, 2009
The Tilt-Table Test
Today I had my tilt-table test and it was quite an experience. I was a little nervous for it for several reasons. 1). I was hoping that my heart would "do it's thang" even though I was nervous. 2). I was afraid of going into an adrenal crisis during the test 3). I hate hospitals!
I got there. Got registered and had some blood taken. Just an electrolyte panel and a pregnancy test in case they wanted to use nitroglycerin during the tilt-table exam.
Then I got all hooked up with a saline IV and was strapped to a table that looked like a torture device. All of the nurses were REALLY friendly and none of them were crabby or complaining which was great. I HATE IT when nurses complain to me about other patients.
As soon as the nurse tilted me up, I was like...whoa holy moly! I immediately felt the blood rush from my head. They raised me up to 70 degrees and kept me there for about 20 minutes. I had to tell them exactly what I was feeling at every given moment. The first few minutes were terrible. I felt very lightheaded, dizzy, near faint, but then I normalized. That feeling went away (for the most part) yet my heart rate just kept climbing. I could not believe it! And all this time I thought my tachycardia was because of low blood pressure. There were a few moments where I'd feel faint again, but then I'd be okay.
I asked the nurse what my pulse was running (I could hear the beeps) and he said it was at about 134. Wow! That is simply me just being tilted up. Not walking around or anything.
The doctor came in and even he was pretty shocked with the response. Then he decided to lay me back down supine and give 1/2 a nitroglycerin tab under the tongue. They tilted me back up and all hell broke loose. I felt TERRIBLE. My vision started to get really fuzzy. I felt faint, dizzy, nauseous. They didn't keep me tilted for long and I was not complaining. My heart was beating so very fast and I just wanted to lay down.
During the middle of it, I told them I felt this extreme "terribleness". The nurse kind of laughed at that word I made up at the moment. When my heart starts to go this fast, I told them this is usually when I lay down and don't get up for a while. I wanted nothing more than to unstrap myself from that stupid table and lay down on the nearest bed. haha My heart hit 178 bp from the combination of nitroglyercin and simply being tilted up at a 70 degree angle.
This is what I have to deal with on a daily basis.
I have no answers right now, but it was interesting to see the vital signs during the test. I'll get a more official report later on. The nice nurse was kind enough to print me the vital signs, but said she wasn't allowed to give more than that. That's really all I care about to be honest. I guess it would be good to know if I had any PVC's or other abnormalities, but I didn't feel any.
These are the vital signs. I'll try to put this in an easy to read format for all of you. They took vitals every minute.
Start of Test (SUPINE)==> BP 112/65 HR 82
Tilting==> Each BP/HR represents 1 minute of tilting unless otherwise stated
BP 130/83 HR 85
BP 130/97 HR 112
BP -------- HR 117
BP 137/88 HR 117
BP -------- HR 120
BP 117/71 HR 121
BP -------- HR 116
BP 112/90 HR 119
BP -------- HR 120
BP 110/80 HR 124
BP -------- HR 125
BP 128/88 HR 126
BP -------- HR 133
BP -------- HR 133
BP 123/83 HR 133
BP 123/80 HR 133
BP -------- HR 136
BP 118/81 HR 134
BP -------- HR 134
BP 128/90 HR 147
BP -------- HR 143
BP 129/80 HR 142
BP -------- HR 137
Started tilting back down for the Nitroglycerin==>
BP 128/76 HR 113
BP -------- HR 109
Tilting Back Up With Nitroglycerin==>
BP 124/65 HR 145
BP 97/55 HR 164
BP 108/70 HR 169
BP 99/49 HR 175
BP 95/58 HR 175
BP 140/80 HR 173
Starting Tilting me back down===>
BP 140/77 HR 137
BP -------- HR 113
Test Complete. PHEW
I got there. Got registered and had some blood taken. Just an electrolyte panel and a pregnancy test in case they wanted to use nitroglycerin during the tilt-table exam.
Then I got all hooked up with a saline IV and was strapped to a table that looked like a torture device. All of the nurses were REALLY friendly and none of them were crabby or complaining which was great. I HATE IT when nurses complain to me about other patients.
As soon as the nurse tilted me up, I was like...whoa holy moly! I immediately felt the blood rush from my head. They raised me up to 70 degrees and kept me there for about 20 minutes. I had to tell them exactly what I was feeling at every given moment. The first few minutes were terrible. I felt very lightheaded, dizzy, near faint, but then I normalized. That feeling went away (for the most part) yet my heart rate just kept climbing. I could not believe it! And all this time I thought my tachycardia was because of low blood pressure. There were a few moments where I'd feel faint again, but then I'd be okay.
I asked the nurse what my pulse was running (I could hear the beeps) and he said it was at about 134. Wow! That is simply me just being tilted up. Not walking around or anything.
The doctor came in and even he was pretty shocked with the response. Then he decided to lay me back down supine and give 1/2 a nitroglycerin tab under the tongue. They tilted me back up and all hell broke loose. I felt TERRIBLE. My vision started to get really fuzzy. I felt faint, dizzy, nauseous. They didn't keep me tilted for long and I was not complaining. My heart was beating so very fast and I just wanted to lay down.
During the middle of it, I told them I felt this extreme "terribleness". The nurse kind of laughed at that word I made up at the moment. When my heart starts to go this fast, I told them this is usually when I lay down and don't get up for a while. I wanted nothing more than to unstrap myself from that stupid table and lay down on the nearest bed. haha My heart hit 178 bp from the combination of nitroglyercin and simply being tilted up at a 70 degree angle.
This is what I have to deal with on a daily basis.
I have no answers right now, but it was interesting to see the vital signs during the test. I'll get a more official report later on. The nice nurse was kind enough to print me the vital signs, but said she wasn't allowed to give more than that. That's really all I care about to be honest. I guess it would be good to know if I had any PVC's or other abnormalities, but I didn't feel any.
These are the vital signs. I'll try to put this in an easy to read format for all of you. They took vitals every minute.
Start of Test (SUPINE)==> BP 112/65 HR 82
Tilting==> Each BP/HR represents 1 minute of tilting unless otherwise stated
BP 130/83 HR 85
BP 130/97 HR 112
BP -------- HR 117
BP 137/88 HR 117
BP -------- HR 120
BP 117/71 HR 121
BP -------- HR 116
BP 112/90 HR 119
BP -------- HR 120
BP 110/80 HR 124
BP -------- HR 125
BP 128/88 HR 126
BP -------- HR 133
BP -------- HR 133
BP 123/83 HR 133
BP 123/80 HR 133
BP -------- HR 136
BP 118/81 HR 134
BP -------- HR 134
BP 128/90 HR 147
BP -------- HR 143
BP 129/80 HR 142
BP -------- HR 137
Started tilting back down for the Nitroglycerin==>
BP 128/76 HR 113
BP -------- HR 109
Tilting Back Up With Nitroglycerin==>
BP 124/65 HR 145
BP 97/55 HR 164
BP 108/70 HR 169
BP 99/49 HR 175
BP 95/58 HR 175
BP 140/80 HR 173
Starting Tilting me back down===>
BP 140/77 HR 137
BP -------- HR 113
Test Complete. PHEW
Monday, October 12, 2009
Okay I'm Giving This Diet A Go!
I hate to even call it a diet because it is not. It's another lifestyle change.
My husband is on board with me, so that makes it SOOOO much easier!
Here are the foods we will be excluding for the next few weeks to see if I feel any different. I am only excluding foods that were classified as a 2 or 3.
Egg White/Yolk
Gluten
Milk
Strawberry
Tomato
Wheat
Yogurt
Almond
Kidney Bean
Lima Bean
Barley
I can eat cheese, almond, kidney bean, lima bean and barley (no response), but my husband's allergy test showed his response pretty high. Therefore I'm just excluding it from my diet to remove any possible contamination.
That means we have to throw out all opened jars. Jellies, mustard, relish etc. There is most definitely pieces of wheat or gluten in ALL of those jars. I think I'm going to throw out our collander too and get a new one just to be safe. Although I'm not even sure why I'd need to use it if we aren't eating pasta.
No tomatoes really hits me hard. I can't make stuffed peppers anymore! I can't put tomatoes on chicken breasts to spice it up a bit... I can't eat any type of pasta sauce anymore. AHHH! I can't even put tomatoes on my salads and a lot of the canned beans I used to buy have tomatoes in them. There goes a lot of meals we used to eat on a regular basis.
I had a metabolic panel done on Saturday and these are the results!
Glucose 82 (65-99)
BUN 12 (5-26)
Creatinine 0.82 (0.57-1.00)
GFR >59 (>59)
Bun/Creat Ratio 15 (8-27)
Sodium 138 (135-145)
Potassium 4.7 (3.5-5.2) WOOHOO! The new diet and supping IS working!
Chloride 103 (97-108)
Carbon Dioxide 24 (20-32)
Calcium 9.6 (8.5-10.6)
Protein 6.8 (6-8.5)
Albumin 4.6 (3.5-5.5)
Globulin 2.2 (1.5-4.5)
A/G Ratio 2.1 (1.1-2.5)
Bilirubin 0.3 (0.1-1.2)
Alk Phos 53 (25-150)
AST 17 (0-40)
ALT 18 (0-40)
Sadly this tells me that my heart problem IS NOT electrolytes.
Tomorrow is the Tilt-Table test!
My husband is on board with me, so that makes it SOOOO much easier!
Here are the foods we will be excluding for the next few weeks to see if I feel any different. I am only excluding foods that were classified as a 2 or 3.
Egg White/Yolk
Gluten
Milk
Strawberry
Tomato
Wheat
Yogurt
Almond
Kidney Bean
Lima Bean
Barley
I can eat cheese, almond, kidney bean, lima bean and barley (no response), but my husband's allergy test showed his response pretty high. Therefore I'm just excluding it from my diet to remove any possible contamination.
That means we have to throw out all opened jars. Jellies, mustard, relish etc. There is most definitely pieces of wheat or gluten in ALL of those jars. I think I'm going to throw out our collander too and get a new one just to be safe. Although I'm not even sure why I'd need to use it if we aren't eating pasta.
No tomatoes really hits me hard. I can't make stuffed peppers anymore! I can't put tomatoes on chicken breasts to spice it up a bit... I can't eat any type of pasta sauce anymore. AHHH! I can't even put tomatoes on my salads and a lot of the canned beans I used to buy have tomatoes in them. There goes a lot of meals we used to eat on a regular basis.
I had a metabolic panel done on Saturday and these are the results!
Glucose 82 (65-99)
BUN 12 (5-26)
Creatinine 0.82 (0.57-1.00)
GFR >59 (>59)
Bun/Creat Ratio 15 (8-27)
Sodium 138 (135-145)
Potassium 4.7 (3.5-5.2) WOOHOO! The new diet and supping IS working!
Chloride 103 (97-108)
Carbon Dioxide 24 (20-32)
Calcium 9.6 (8.5-10.6)
Protein 6.8 (6-8.5)
Albumin 4.6 (3.5-5.5)
Globulin 2.2 (1.5-4.5)
A/G Ratio 2.1 (1.1-2.5)
Bilirubin 0.3 (0.1-1.2)
Alk Phos 53 (25-150)
AST 17 (0-40)
ALT 18 (0-40)
Sadly this tells me that my heart problem IS NOT electrolytes.
Tomorrow is the Tilt-Table test!
Saturday, October 10, 2009
More Thyroid Labs
Here are the labs from another hormone doctor. Yes I have a few on-hand...LOL
These labs make even less sense to me. They were done almost exactly 2 weeks later and look at the huge difference.
Note these are NOT free thyroid labs. This doctor doesn't check frees for whatever dumb reason.
T4 6.0 (4.5-12.0)
T3 92 (83-200)
Reverse T3 233 (90-350)
I've never had a Total T3 checked before, so I'm not sure exactly how to interpret this. However usually you want your Free T3 to be near the top of the range and I'm really close to the bottom of the range here. The doctor that ordered this, I'm not sure I am actually going to schedule to see him. I dunno. I'm torn about the whole idea. He has helped me in the past, but money is getting tight with all these medical expenses.
Vitamin D 21.1 (32-100) LOW
Ferritin 33 (10-291) Too low
Taking armour has made both of these tank. I am now supping these hardcore to get them up higher. Ferritin is supposed to be at like 70-90 in order to use thyroid meds properly. /sigh
Glucose 85 (65-99)
BUN 8 (5-26)
Ceratinine 0.80 (0.57-1.00)
eGFR >59 (>59)
BUN/Creat ratio 10 (8-27)
Sodium 141 (135-145)
Potassium 3.7 (3.5-5.2)
Chloride 106 (97-108)
Carbon Dioxide 21 (20-32)
Calcium 9.7 (8.5-10.6)
These labs make even less sense to me. They were done almost exactly 2 weeks later and look at the huge difference.
Note these are NOT free thyroid labs. This doctor doesn't check frees for whatever dumb reason.
T4 6.0 (4.5-12.0)
T3 92 (83-200)
Reverse T3 233 (90-350)
I've never had a Total T3 checked before, so I'm not sure exactly how to interpret this. However usually you want your Free T3 to be near the top of the range and I'm really close to the bottom of the range here. The doctor that ordered this, I'm not sure I am actually going to schedule to see him. I dunno. I'm torn about the whole idea. He has helped me in the past, but money is getting tight with all these medical expenses.
Vitamin D 21.1 (32-100) LOW
Ferritin 33 (10-291) Too low
Taking armour has made both of these tank. I am now supping these hardcore to get them up higher. Ferritin is supposed to be at like 70-90 in order to use thyroid meds properly. /sigh
Glucose 85 (65-99)
BUN 8 (5-26)
Ceratinine 0.80 (0.57-1.00)
eGFR >59 (>59)
BUN/Creat ratio 10 (8-27)
Sodium 141 (135-145)
Potassium 3.7 (3.5-5.2)
Chloride 106 (97-108)
Carbon Dioxide 21 (20-32)
Calcium 9.7 (8.5-10.6)
Wednesday, October 7, 2009
Got My Thyroid Labs Back
Today I got the labs back from the doctor I saw in Michigan. I have no idea what in the hell is going on with my body.
TSH 0.25 (0.40-4.50)
FT4 0.8 (0.8-1.8)
FT3 752 (230-420) Oh my goodness!
Reverse T3 19 (11-32)
Iron 65 (45-175)
Ferritin 50 (10-291)
Glucose 88 (65-99)
Insulin 14 (<17)
Potassium 4.1 (3.5-5.3) That potassium is finally coming up!
I told the doc to throw in a lipid panel because I've NEVER had one done before.
Total Cholesterol 190 (125-200)
HDL 90 (>= 46)
Triglycerides 44 (<150)
LDL-Cholesterol 91 (<130)
Chol/HDLC ratio 2.1 (<=5.0)
I had EBV at 17, but this doctor wanted to check the antibodies again.
Epstein Barr Virus Early Antigen D AB (IGG) <=0.90 (Negative)
Epstein Barr Virus VCA Antibody (IGM) <=0.90 (Negative)
Epstein Barr Virus VCA Antibody (IGG) 4.53 HIGH
Epstein Barr Virus (EBNA) Antibody (IGG) >5.00 HIGH
Interpretation: Suggestive of past EBV infection.
So...I don't know what is going on with my body. I think it's just really ticked off! On this trip I remember feeling SO tired and didn't feel hyper at all. Apparently though with this lab, I don't know when I'm hyper or hypo. That's been made pretty clear to me now.
I also got my food allergy test back....HAHA Sadly I doubt I'll be cutting back on these foods. Some of the foods that showed are absolutely ridiculous. I have no idea what I'd even eat. Here's what came back with a response.
Blueberry (low)
Broccoli (low)
Cottage Cheese (low)
Corn (low)
Egg Whites (Medium)
Egg Yolks (Very high)
Garlic (low)
Gluten (Medium)
Lemon (low)
Lettuce!! (low)
Malt (low)
Cow's Milk (Very high)
Black Pepper!! (low)
Sweet Potato (low)
White Potato (low)
Soybean (low)
Strawberry!! (Medium)
Tomato!! (Medium)
Wheat (High)
Baker's Yeast! (low)
Yogurt (Medium
I went through every single food we eat in this house and I'm getting at least 1 of these allergens at EVERY meal. I use black pepper, tomatoes, garlic and eat salads a lot. If I can't eat salad then what the heck am I supposed to do? Even some of the gluten free alternatives would be an issue because of corn. These results really just pissed me off more than anything.
TSH 0.25 (0.40-4.50)
FT4 0.8 (0.8-1.8)
FT3 752 (230-420) Oh my goodness!
Reverse T3 19 (11-32)
Iron 65 (45-175)
Ferritin 50 (10-291)
Glucose 88 (65-99)
Insulin 14 (<17)
Potassium 4.1 (3.5-5.3) That potassium is finally coming up!
I told the doc to throw in a lipid panel because I've NEVER had one done before.
Total Cholesterol 190 (125-200)
HDL 90 (>= 46)
Triglycerides 44 (<150)
LDL-Cholesterol 91 (<130)
Chol/HDLC ratio 2.1 (<=5.0)
I had EBV at 17, but this doctor wanted to check the antibodies again.
Epstein Barr Virus Early Antigen D AB (IGG) <=0.90 (Negative)
Epstein Barr Virus VCA Antibody (IGM) <=0.90 (Negative)
Epstein Barr Virus VCA Antibody (IGG) 4.53 HIGH
Epstein Barr Virus (EBNA) Antibody (IGG) >5.00 HIGH
Interpretation: Suggestive of past EBV infection.
So...I don't know what is going on with my body. I think it's just really ticked off! On this trip I remember feeling SO tired and didn't feel hyper at all. Apparently though with this lab, I don't know when I'm hyper or hypo. That's been made pretty clear to me now.
I also got my food allergy test back....HAHA Sadly I doubt I'll be cutting back on these foods. Some of the foods that showed are absolutely ridiculous. I have no idea what I'd even eat. Here's what came back with a response.
Blueberry (low)
Broccoli (low)
Cottage Cheese (low)
Corn (low)
Egg Whites (Medium)
Egg Yolks (Very high)
Garlic (low)
Gluten (Medium)
Lemon (low)
Lettuce!! (low)
Malt (low)
Cow's Milk (Very high)
Black Pepper!! (low)
Sweet Potato (low)
White Potato (low)
Soybean (low)
Strawberry!! (Medium)
Tomato!! (Medium)
Wheat (High)
Baker's Yeast! (low)
Yogurt (Medium
I went through every single food we eat in this house and I'm getting at least 1 of these allergens at EVERY meal. I use black pepper, tomatoes, garlic and eat salads a lot. If I can't eat salad then what the heck am I supposed to do? Even some of the gluten free alternatives would be an issue because of corn. These results really just pissed me off more than anything.
Tuesday, October 6, 2009
My Eyes and Current Condition
I really need to keep up with my blog. I am sorry to all of you who are watching this.
Okay first off my eyes are bad again. I read through the last few months and I don't think I ever really updated what happened with my eyes. The Posterior Vitreous in my left eye did finally detach itself from the retina and the right eye is "impending detachment". Now this is not as serious as a retinal detachment as it requires no surgery, but once this happens you are at VERY high risk for retinal detachment. If I hit my head really hard or lifted something very heavy, I might cause it to tear or completely detach!
I've been getting serious pain in my left eye and there are more floaters. I just had my 6th month(?) check up about 2 1/2 weeks ago and he said everything was good. Well 2 1/2 weeks ago I wasn't having these symptoms and some of the floaters at night are glowing! Yes glowing! I'm going to play it by ear or until the pain gets so bad that I just can't take it anymore. All I know is that when I look at people's faces, there is a scary looking floater that wasn't there before. I'd try to draw a picture of it, but I don't even know how to begin. The floaters have been REALLY noticable. For a while there I actually forgot about them, but they are more web-like and much darker.
Just for records sake, here are my current meds:
25mg HC
1 grain of Armour
0 Florinef
2 Bio-identical Aldosterone caps
6.25 mg of DHEA
20-40 MEQ of RX Potassium
1-2 sprays of DDAVP
Midodrine (oh my goodness)
I am so glad it is getting colder outside! YES. I can actually live for now. Today for some unknown reason was pretty bad BP/heart day which is why I took the midodrine. Sadly it didn't do anything. My BP sitting was 88/75 and my heart rate was 150...LOL I am glad that I can laugh at it now because earlier I was pretty ticked off.
My husband's health has been so poor that I haven't really been taking care of myself. lol It's funny how that happens. In some ways, he is much worse than me. It's hard having 2 sick people in the house now and I find myself "annoyed" because we both can't get stuff done around the house. There are so many things that need done right now, it's not even funny. We need to get the garaged cleared out so we can park the car in there for the winter. Just thinking about all the lifting, bending up and down makes me want to cry. I'm going to be so ill.
About a month ago we drove out to Michigan to see a new doctor for my husband. I also saw another doctor to get a 2nd opinion on everything. At this point nothing has been done because we were waiting on new blood work and a food allergy test. I have a VOV (virtual office visit) with her on October 14th. I'll get to tell her all about that lovely Tilt-table test...haha We still might have to go back out to see the OTHER doctor. /sigh
Since it's getting colder outside, I've been feeling much better. I still have bad days (like today). I might try to do a round of chelation just to see what happens to me. Since I'm on HC, I bet they go much smoother.
In addition to all this, I am trying to have more of social life. I have been catching up with some of my old friends. I realize that through all this health nightmare, I've neglected to let myself have a good time. I've been fighting to stay alive for nearly 4 years. Now that I feel a little better, I need to take advantage of this time.
Okay first off my eyes are bad again. I read through the last few months and I don't think I ever really updated what happened with my eyes. The Posterior Vitreous in my left eye did finally detach itself from the retina and the right eye is "impending detachment". Now this is not as serious as a retinal detachment as it requires no surgery, but once this happens you are at VERY high risk for retinal detachment. If I hit my head really hard or lifted something very heavy, I might cause it to tear or completely detach!
I've been getting serious pain in my left eye and there are more floaters. I just had my 6th month(?) check up about 2 1/2 weeks ago and he said everything was good. Well 2 1/2 weeks ago I wasn't having these symptoms and some of the floaters at night are glowing! Yes glowing! I'm going to play it by ear or until the pain gets so bad that I just can't take it anymore. All I know is that when I look at people's faces, there is a scary looking floater that wasn't there before. I'd try to draw a picture of it, but I don't even know how to begin. The floaters have been REALLY noticable. For a while there I actually forgot about them, but they are more web-like and much darker.
Just for records sake, here are my current meds:
25mg HC
1 grain of Armour
0 Florinef
2 Bio-identical Aldosterone caps
6.25 mg of DHEA
20-40 MEQ of RX Potassium
1-2 sprays of DDAVP
Midodrine (oh my goodness)
I am so glad it is getting colder outside! YES. I can actually live for now. Today for some unknown reason was pretty bad BP/heart day which is why I took the midodrine. Sadly it didn't do anything. My BP sitting was 88/75 and my heart rate was 150...LOL I am glad that I can laugh at it now because earlier I was pretty ticked off.
My husband's health has been so poor that I haven't really been taking care of myself. lol It's funny how that happens. In some ways, he is much worse than me. It's hard having 2 sick people in the house now and I find myself "annoyed" because we both can't get stuff done around the house. There are so many things that need done right now, it's not even funny. We need to get the garaged cleared out so we can park the car in there for the winter. Just thinking about all the lifting, bending up and down makes me want to cry. I'm going to be so ill.
About a month ago we drove out to Michigan to see a new doctor for my husband. I also saw another doctor to get a 2nd opinion on everything. At this point nothing has been done because we were waiting on new blood work and a food allergy test. I have a VOV (virtual office visit) with her on October 14th. I'll get to tell her all about that lovely Tilt-table test...haha We still might have to go back out to see the OTHER doctor. /sigh
Since it's getting colder outside, I've been feeling much better. I still have bad days (like today). I might try to do a round of chelation just to see what happens to me. Since I'm on HC, I bet they go much smoother.
In addition to all this, I am trying to have more of social life. I have been catching up with some of my old friends. I realize that through all this health nightmare, I've neglected to let myself have a good time. I've been fighting to stay alive for nearly 4 years. Now that I feel a little better, I need to take advantage of this time.
Midodrine Is A Nightmare
Taking midodrine is absolutely horrific. For those of you who don't know what this drug does, it's a vasopressor and is supposed to raise your blood pressure. My Electrophysiologist (EP)wanted me to try this out for a while to see if it helped with my postural orthostatic tachycardia. Well it's some of the nastiest stuff. Within 35 minutes of taking it, I feel like bugs are crawling on my skin. My hair feels like it's going to lift off my scalp and it makes me extremely anxious and nervous. And the worst part? It doesn't work at all.
I can see why there was such a large early drop out rate in the clinical studies. I wouldn't have made it through one either.
On the 13, I go for my Tilt-Table Test. I'll be sure to let everyone know how hellish it was. I kind of hope that I pass out on the table.
I can see why there was such a large early drop out rate in the clinical studies. I wouldn't have made it through one either.
On the 13, I go for my Tilt-Table Test. I'll be sure to let everyone know how hellish it was. I kind of hope that I pass out on the table.
Sunday, September 20, 2009
Apparently Nothing is Wrong with me
Holter Monitor came back "Normal".
Here's the full report
1. Total recording was for 23 hours 59 minute with approximately 9 minutes of deletion due to artifact. The underlying rhythm was normal sinus rhythm. PR interval was 0.14, QRS 0.06, QT Interval normal. Lower heart rate was 55, upper heart rate was 159 BPM. Normal AV conduction.
2. Rare ventricular ectopy, totally 20, All Single.
3. Rare supraventricular ectopy, totally 74, 47 were Isolated, 18 paired. There were short runs of sinus arrythmia, but no significant tachyarrythmias were present.
4. The patient had no significant ST depression or elevation.
5. The patient completed a diary and had rapid heart rate and rapid breathing at approximately 1 PM. This was associated with sinus/sinus tachycardia.
Impression:
Overall, Holter Monitor is benign showing normal sinus rhythm with multiple episodes of rapid atrial rhythm, which were associated normal sinus rhythm and sinus tachycardia. No inappropriate supraventricular tachycardia was seen.
Now the sick thing was that this was a GOOD DAY for me. 160 heart rate is about normal for me if I do normal daily activities yet it looks like during these "episodes" the heart is beating fine. I guess that's good, but I feel like shit. So now what?
I go in for a the Tilt Table Test on October 13. I've had this BULLSHIT for 7 years, so what's another 3 weeks?
In other news, my husband was in the hospital for 3 days with guess what? TACHYCARDIA! After all these tests, they have no idea. What a surprise. No one knows what causes mine either. In the past few weeks I've had a lot of weird things happen to me. I'm not exactly sure how to explain it, but I feel like a different person emotionally and spiritually. When my husband was admitted to the hospital after having an adrenal crisis, it really shook me up. I had to take control of everything and drive myself around. I haven't done that for years and I realized that I can still do all of that if I put my mind to it. I realized that I can be as independent as I want to be, but I just have to give myself a chance to do it. I dunno. I can't even explain what I feel, but whatever it was it was for the better. My anxiety is gone...completely.
Here's the full report
1. Total recording was for 23 hours 59 minute with approximately 9 minutes of deletion due to artifact. The underlying rhythm was normal sinus rhythm. PR interval was 0.14, QRS 0.06, QT Interval normal. Lower heart rate was 55, upper heart rate was 159 BPM. Normal AV conduction.
2. Rare ventricular ectopy, totally 20, All Single.
3. Rare supraventricular ectopy, totally 74, 47 were Isolated, 18 paired. There were short runs of sinus arrythmia, but no significant tachyarrythmias were present.
4. The patient had no significant ST depression or elevation.
5. The patient completed a diary and had rapid heart rate and rapid breathing at approximately 1 PM. This was associated with sinus/sinus tachycardia.
Impression:
Overall, Holter Monitor is benign showing normal sinus rhythm with multiple episodes of rapid atrial rhythm, which were associated normal sinus rhythm and sinus tachycardia. No inappropriate supraventricular tachycardia was seen.
Now the sick thing was that this was a GOOD DAY for me. 160 heart rate is about normal for me if I do normal daily activities yet it looks like during these "episodes" the heart is beating fine. I guess that's good, but I feel like shit. So now what?
I go in for a the Tilt Table Test on October 13. I've had this BULLSHIT for 7 years, so what's another 3 weeks?
In other news, my husband was in the hospital for 3 days with guess what? TACHYCARDIA! After all these tests, they have no idea. What a surprise. No one knows what causes mine either. In the past few weeks I've had a lot of weird things happen to me. I'm not exactly sure how to explain it, but I feel like a different person emotionally and spiritually. When my husband was admitted to the hospital after having an adrenal crisis, it really shook me up. I had to take control of everything and drive myself around. I haven't done that for years and I realized that I can still do all of that if I put my mind to it. I realized that I can be as independent as I want to be, but I just have to give myself a chance to do it. I dunno. I can't even explain what I feel, but whatever it was it was for the better. My anxiety is gone...completely.
Tuesday, September 1, 2009
Labs Are Back and Call From the Cardiologist
Here's my latest labs:
Meds were as followed-
0 Florinef -I quit this a few weeks ago because I was potassium wasting WAY too much. I was sick of the constant chest pains and muscle cramps.
30mg HC
2 grains of Armour
6.25mg of DHEA
DDAVP when needed
20-60 MEQ's of potassium-If I have chest pains I take more that day
Glucose 84 (65-99) This is good. I've seen it in the 90's and that was a bit concerning
Sodium 136 (135-145) This is from the low aldosterone
Potassium 3.8 (3.5-5.2) Kind of sickening that it's this low still
Chloride 102 (97-108)
Carbon Dioxide 22 (20-32)
B-12 619 (211-911) Kind of surprising it's this high
TSH 0.129 (0.45-4.500) Just 2 weeks ago my TSH was 1.6 on the same dose of Armour? Apparently my pituitary is just taking a nap right now LOL
FT3 3.3 (2.3-4.2) Before treatment I was at 3.1
FT4 1.03 (0.61-1.76) Before treatment I was at 1.29
Reverse T3 310 (90-350) WOW!
DHEA-S 137 (65-380) This was 10 hours after taking 6.25mg of DHEA
So from what I understand it looks like I have a problem converting T4 into RT3 rather than into the active T3 form. My ratio is 0.0106 and it should be 0.020. Most people would say that I need to go on a T-3 only regimen, but I don't know if my doc would be up for that. I'll have to see what he wants to do with this. I feel more hypo than before and my weight gain (even being off the florinef) is still not good. I look more puffy than ever, which I thought was the florinef. Now I'm not so sure!
I'm staying on 6.25mg of DHEA. That lab isn't that bad in my opinion after 1o hours and don't really feel any benefits at 12.5+ I start to get acne really really bad and my sex drive actually goes down. For whatever reason 6.25mg is my sweet spot as it must completely convert to testosterone.
Today I got a call from the cardiologist's office (well he's an electro physiologist) and I have a feeling that something was seen on the Holter monitor. Maybe I'm making something out of nothing, but I just saw him on Friday and he said we didn't need to do another EKG because I had one from my PCP done a few weeks back. Well his office called and told me that the doc wanted an EKG from me and to call back to schedule this...Hmm. I need to schedule the Tilt Test as well, so I'll have to ask why the sudden change in heart (heh).
Meds were as followed-
0 Florinef -I quit this a few weeks ago because I was potassium wasting WAY too much. I was sick of the constant chest pains and muscle cramps.
30mg HC
2 grains of Armour
6.25mg of DHEA
DDAVP when needed
20-60 MEQ's of potassium-If I have chest pains I take more that day
Glucose 84 (65-99) This is good. I've seen it in the 90's and that was a bit concerning
Sodium 136 (135-145) This is from the low aldosterone
Potassium 3.8 (3.5-5.2) Kind of sickening that it's this low still
Chloride 102 (97-108)
Carbon Dioxide 22 (20-32)
B-12 619 (211-911) Kind of surprising it's this high
TSH 0.129 (0.45-4.500) Just 2 weeks ago my TSH was 1.6 on the same dose of Armour? Apparently my pituitary is just taking a nap right now LOL
FT3 3.3 (2.3-4.2) Before treatment I was at 3.1
FT4 1.03 (0.61-1.76) Before treatment I was at 1.29
Reverse T3 310 (90-350) WOW!
DHEA-S 137 (65-380) This was 10 hours after taking 6.25mg of DHEA
So from what I understand it looks like I have a problem converting T4 into RT3 rather than into the active T3 form. My ratio is 0.0106 and it should be 0.020. Most people would say that I need to go on a T-3 only regimen, but I don't know if my doc would be up for that. I'll have to see what he wants to do with this. I feel more hypo than before and my weight gain (even being off the florinef) is still not good. I look more puffy than ever, which I thought was the florinef. Now I'm not so sure!
I'm staying on 6.25mg of DHEA. That lab isn't that bad in my opinion after 1o hours and don't really feel any benefits at 12.5+ I start to get acne really really bad and my sex drive actually goes down. For whatever reason 6.25mg is my sweet spot as it must completely convert to testosterone.
Today I got a call from the cardiologist's office (well he's an electro physiologist) and I have a feeling that something was seen on the Holter monitor. Maybe I'm making something out of nothing, but I just saw him on Friday and he said we didn't need to do another EKG because I had one from my PCP done a few weeks back. Well his office called and told me that the doc wanted an EKG from me and to call back to schedule this...Hmm. I need to schedule the Tilt Test as well, so I'll have to ask why the sudden change in heart (heh).
Saturday, August 29, 2009
Scariest Chest Pain Ever
Yesterday I was having horrific anxiety again, which has come on since starting the Armour. I think I probably have a Reverse T3 problem and I just got some labs done to see.
I was getting ready for bed and my heart seemed a little weird. I just had this strange feeling and I felt extremely lightheaded and dizzy. So I went to lie down and my husband was talking to me. Then suddenly this intense stabbing pain hit me like a damn train. It completely took my breath away and went on for about 25 seconds. I got so scared, I started to cry and hyperventilate.
Then suddenly...gone. WTF!? I was ready to call 9-11 because it felt like a heart attack. It has me so freaked out now. It was such a sharp pain. Probably the worst pain I've ever felt in my entire life. Worse than that kidney stone I had years ago. Worse than falling off the monkey bars and having to walk home with a broken arm. It was so intense.
It was NOT one of those Precordial Catch pains. I've had those before where it hurts to breathe out the whole way. No no. This was like someone was squeezing my heart as tight as possible. I felt almost paralyzed by the pain.
Why can't stuff like this happen when I have a monitor on me? lol
I was getting ready for bed and my heart seemed a little weird. I just had this strange feeling and I felt extremely lightheaded and dizzy. So I went to lie down and my husband was talking to me. Then suddenly this intense stabbing pain hit me like a damn train. It completely took my breath away and went on for about 25 seconds. I got so scared, I started to cry and hyperventilate.
Then suddenly...gone. WTF!? I was ready to call 9-11 because it felt like a heart attack. It has me so freaked out now. It was such a sharp pain. Probably the worst pain I've ever felt in my entire life. Worse than that kidney stone I had years ago. Worse than falling off the monkey bars and having to walk home with a broken arm. It was so intense.
It was NOT one of those Precordial Catch pains. I've had those before where it hurts to breathe out the whole way. No no. This was like someone was squeezing my heart as tight as possible. I felt almost paralyzed by the pain.
Why can't stuff like this happen when I have a monitor on me? lol
Saturday, August 22, 2009
Here's an Update
It's been really long since I last post because I've been doing terrible. I feel like crap emotionally. I feel like crap physically. I cannot leave my house anymore because my heart rates are through the roof again. I've stopped florinef to see what would happen and I can already tell I'm not wasting so much potassium anymore. At one point I was taking up to 120 MEQ's of potassium a day just to keep myself from having chest pains and muscle cramps. Now I'm taking 20-40 MEQ's a day just to keep my levels up. I plan on started back on the florinef at 1/2 tab to just start over again. Maybe I overshot my correct dosage. I may be looking into the bio-identical aldosterone available from Canada.
This summer went from being incredible (planting flowers, taking walks, tanning) to just downright miserable. Now I am having low thyroid symptoms in addition to everything else. I look puffy. My eyes are so baggy, I look like I haven't slept for days. The weight gain is out of control. I need to go pants shopping again!
Since my heart rates have now reached into the 170-180's upon standing, I am seeing a cardiologist on Aug. 28 that specifically deals with POTS (Postural orthostatic tachycardia syndrome). A new echocardiogram I had done last week shows that I no longer have mitral valve prolapse, so that's pretty interesting. Nothing is physically wrong with the heart. The doctor can't blame it on that like the technician was telling me. "Oh this is probably all from mitral valve prolapse". I just nodded my head. Right!! I do not know ANYONE who's heart rate almost hits 200 when they stand. Give me a break. If everyone with MVP had this, then it wouldn't be so benign.
On Monday I am getting a Holter monitor placed on me for 24 hours and I plan on doing all the activities that make me feel like I'm going to die. I'm going to walk down to my flower bed and pull weeds. And I'll probably do the dishes and laundry. Gosh darnit, I hope it's a terrible heart day because I need this cardiologist to see what hell I go through on a daily basis. I cannot take this shit anymore.
My husband has been feeling sick, so that's not making things any better either. 2 sick people in a relationship causes a lot of tension especially when we are both too sick to keep the house up and running. Work has been stressful and nothing seems to be going right. This hormone replacement bullshit has not been going good for him either. He now has the rapid heart rate upon standing and I'm scared for him. What if florinef doesn't work for him either? Then what?
Guess we're moving somewhere cold.
This summer went from being incredible (planting flowers, taking walks, tanning) to just downright miserable. Now I am having low thyroid symptoms in addition to everything else. I look puffy. My eyes are so baggy, I look like I haven't slept for days. The weight gain is out of control. I need to go pants shopping again!
Since my heart rates have now reached into the 170-180's upon standing, I am seeing a cardiologist on Aug. 28 that specifically deals with POTS (Postural orthostatic tachycardia syndrome). A new echocardiogram I had done last week shows that I no longer have mitral valve prolapse, so that's pretty interesting. Nothing is physically wrong with the heart. The doctor can't blame it on that like the technician was telling me. "Oh this is probably all from mitral valve prolapse". I just nodded my head. Right!! I do not know ANYONE who's heart rate almost hits 200 when they stand. Give me a break. If everyone with MVP had this, then it wouldn't be so benign.
On Monday I am getting a Holter monitor placed on me for 24 hours and I plan on doing all the activities that make me feel like I'm going to die. I'm going to walk down to my flower bed and pull weeds. And I'll probably do the dishes and laundry. Gosh darnit, I hope it's a terrible heart day because I need this cardiologist to see what hell I go through on a daily basis. I cannot take this shit anymore.
My husband has been feeling sick, so that's not making things any better either. 2 sick people in a relationship causes a lot of tension especially when we are both too sick to keep the house up and running. Work has been stressful and nothing seems to be going right. This hormone replacement bullshit has not been going good for him either. He now has the rapid heart rate upon standing and I'm scared for him. What if florinef doesn't work for him either? Then what?
Guess we're moving somewhere cold.
Saturday, July 18, 2009
Water Deprivation Results
Before I post the results to the water test, I wanted to talk about the extreme anxiety I have been experiencing recently. It is absolutely ruining my life and it comes on suddenly without warning. I could not sleep last night because of it. I forgot to take my DDAVP and was having horrific night sweats...I really need to remember taking it. Anyway, I woke up a few times with my heart racing. I was definitely having a panic attack in the middle of the night and just decided to get up.
What's the point of going through mental torment while laying bed?
On monday I am talking with an EFT counselor to see if she can get to the bottom of all this. I'm really scared about this, so maybe I'm already stressing over talking to her about my anxiety...LOL
Glucose--84 (65-99)
Sodium--142 (135-145)
Potassium--3.4 (3.5-5.2) LOW Don't worry I'm already on RX potassium.
BUN--13 (5-26)
Creatinine--0.92 (0.57-1.00)
Chloride--103 (97-108)
Carbon Dioxide--24 (20-32)
ADH-- <0.8 (0.0-4.7) LOW
Serum Osmolality--287 (275-295) Last time I was above range on this one
Urine, Osmolality--784 (After 12 hour fluid restriction >850) LOW
At first glance the doc thought the ADH was too low, but then he said my sodium wasn't high enough. I pointed out to him that the urine osmolality for 12 hour fluid restriction was too low regardless that it concentrated at all. Yes I don't have complete, severe DI. We already knew that, but this does not rule out partial DI.
I have been taking my spray again with good results. I'm just going to take it when I feel I need it and that's that. I'll probably have to go back to Dr. Goldstein to get more refills in a few months. I'll worry about that when that comes up. I should probably make an appointment now though to see him.
What's the point of going through mental torment while laying bed?
On monday I am talking with an EFT counselor to see if she can get to the bottom of all this. I'm really scared about this, so maybe I'm already stressing over talking to her about my anxiety...LOL
Glucose--84 (65-99)
Sodium--142 (135-145)
Potassium--3.4 (3.5-5.2) LOW Don't worry I'm already on RX potassium.
BUN--13 (5-26)
Creatinine--0.92 (0.57-1.00)
Chloride--103 (97-108)
Carbon Dioxide--24 (20-32)
ADH-- <0.8 (0.0-4.7) LOW
Serum Osmolality--287 (275-295) Last time I was above range on this one
Urine, Osmolality--784 (After 12 hour fluid restriction >850) LOW
At first glance the doc thought the ADH was too low, but then he said my sodium wasn't high enough. I pointed out to him that the urine osmolality for 12 hour fluid restriction was too low regardless that it concentrated at all. Yes I don't have complete, severe DI. We already knew that, but this does not rule out partial DI.
I have been taking my spray again with good results. I'm just going to take it when I feel I need it and that's that. I'll probably have to go back to Dr. Goldstein to get more refills in a few months. I'll worry about that when that comes up. I should probably make an appointment now though to see him.
Sunday, July 5, 2009
Not Something I'm Proud Of
I've gained 20 pounds since starting hormone replacement. Let me tell you this does not make me very happy...at all. I tried telling myself that it would "calm down", but I have been on an upward trend for months now and I don't see this changing anytime soon.
Since I can't tolerate Armour I have no idea what I'm supposed to do. Is this my true weight rather than the adrenal insufficient, dying weight I was before? Or is this just hypothyroid rearing its head!
This alone is making me extremely depressed and I'm probably going to have to buy new pants again. That's what the 3rd time now in 3 months? I scare the shit out of myself when I enter this zone because I see the anorexic me come back instantly. The anorexic me that caused all these health problems to begin with. I was a normal, healthy person before I went and starved myself yet here I am thinking that cutting my calories back even further is a good thing.
My heart rates have been up again. The florinef is not keeping them in check anymore, so I feel like nothing is better. Today was absolutely beautiful outside, but as soon as I stepped outside and went to look at my flowers---BAM 147 heart rate--You can't do anything when your heart is that high except gasp for air and look for the nearest place to sit down.
I am pissed off and not in a good mood.
Since I can't tolerate Armour I have no idea what I'm supposed to do. Is this my true weight rather than the adrenal insufficient, dying weight I was before? Or is this just hypothyroid rearing its head!
This alone is making me extremely depressed and I'm probably going to have to buy new pants again. That's what the 3rd time now in 3 months? I scare the shit out of myself when I enter this zone because I see the anorexic me come back instantly. The anorexic me that caused all these health problems to begin with. I was a normal, healthy person before I went and starved myself yet here I am thinking that cutting my calories back even further is a good thing.
My heart rates have been up again. The florinef is not keeping them in check anymore, so I feel like nothing is better. Today was absolutely beautiful outside, but as soon as I stepped outside and went to look at my flowers---BAM 147 heart rate--You can't do anything when your heart is that high except gasp for air and look for the nearest place to sit down.
I am pissed off and not in a good mood.
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