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.

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

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

Kidney Bean
Lima Bean

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)

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.

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.

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.