Monday, December 28, 2009

What Should I Do Now?

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 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 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!

Wednesday, December 23, 2009


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.

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 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.

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.

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.

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!

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.

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.

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.

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).

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

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.

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.

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 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.

Monday, June 29, 2009

Random Stuff

Here's a picture of the cheesecake I made for me hubby's birthday a few weeks ago. It was to die for and I'll have to make another one some day. This was the first cheesecake I've ever made and was extremely pleased with how it turned out. The chocolaty center and topping was something I decided to do halfway through the recipe and I think it really added to the overall flavor and presentation! I mixed some strongly brewed coffee in it to give it a little kick.

It was a pricey cheesecake! That's for sure. LOL I think ingredients alone it must have cost me about $30 for all the cream cheese, eggs, graham crackers etc. Of course it was all organic, so that adds to the costs.

Here's a picture of what I have been working on outside. Unfortunately the one flower is in between a blooming, but you get the idea! I completely cleared out the area because it was full of weeds and really tall grass. Thankfully there is no poison ivy around this tree.

These are my neighbors blackberries, but they hang over into our yard. I don't think they are missing them. =p They taste absolutely delicious, but they will be all gone from the birds very soon! The robins have been picking at them quite a bit.

The other tree has so much poison ivy around it, that it actually LOOKS like it is PART of the tree! This is the type of poison ivy that gets people because it has woody vines and hangs down like the other tree's leaves. I'm not sure if anyone else has noticed a huge increase in poison ivy or not. However it just seems like I am finding new sprigs of it EVERYWHERE!

I've never had poison ivy before, but I'm not about to go walking around that tree!

Wednesday, June 24, 2009

I Lived Through It!

This water deprivation was much harder than the last one. I woke up at 5AM so thirsty and I couldn't do a darn thing about it. The crazy thing is that I had to wake up and pee too. Wow! I was 7 hours into the deprivation and my body was still urinating during the night. That's pretty crazy.

I was awake from 5am to about 8am. I literally just laid in bed, sweating and just hoping that this would be over. Then eventually I fell asleep and woke up around 10AM. I felt so lifeless this morning. My mouth was tacky and I cracked my lip really bad during the night. It was bleeding. My left arm started to cramp up really bad. My fingers wanted to curl and my forearm was on fire!

We got to the lab and they were closed...LOL so we had to go to another lab about 30 minutes away. /sigh I told the lady to get the blood out of me now, so I can drink some water. She knew what was up and before she looked at the tubes said, "oh you are getting ADH checked?" I was impressed to be honest and she's drawn my blood before in the labcorp near my house.

My urine was fairly dark when I collected it this morning. That's a good sign that my body does concentrate urine somewhat. I know that I don't have severe, complete DI or I wouldn't even been able to go 3 hours without water. People with complete DI usually can't go more than 2 hours before their vitals get so weak that they are at serious risk of going into shock from fluid loss.

I am very curious to see what the results are from these tests. We did a BMP to check sodium, BUN, and potassium. Sodium is supposed to be higher when you are dehydrated and now that I'm taking florinef I wonder if my body is responding appropriately now. We also checked blood osmolality to see how thick my blood was getting. This tells you exactly how dehydrated the body is at that very moment. Anything above 295 means that you are maximum conservation mode. Lastly we checked serum ADH. This test isn't always that accurate, but I did it just to see how it compares to my numbers from the test in '08. The urine osmolality will tell me just about everything I need to know, but you have to compare it to the serum osmolality and sodium levels in the blood. You can't just look at 1 thing.

I will definitely post my lab results when I get them back. It will probably be 2 weeks because I know they have to send out the ADH to another lab.

Tuesday, June 23, 2009

Beginning Water Deprivation at 10:30PM...Gulp

I am starting my 12 hour water deprivation, so I can get my lab work done tomorrow. I am doing this again, so that I can see exactly what my body is doing now that I am on Florinef. I haven't taken my DDAVP for about 3 months! This water deprivation is going to be hell. Let me tell you. I thought tonight would be a good night to do this because it was fairly warm today (80 degrees) and I was sweating, peeing and drinking a lot. If my body can't conserve water in 80 degree weather then something is very wrong.

I'm already nervous about it because I am very very thirsty and have been all day long. I haven't kept up with my thirst as much as I should have, but that's what happens when you are working around the house.

If I start to feel really sick I will just quit. It isn't worth risking my life for some stupid numbers on a lab. However I will try my hardest to get through the night. I probably won't be sleeping much and when I usually can't sleep it's from the extreme thirst. I won't be able to reach for that water next to the bed to calm my body down...

Wish me luck because I'm going to need it tonight.

Saturday, June 20, 2009

Tinea Versicolor Flare Up

The first time I had tinea versicolor it was on my chest many years ago, but never knew what it was. It was one of those things that I "lived with". Then one day my husband was like you should find out what is on your chest because it's getting worse.

So I sucked it up and went to my primary care doctor many years ago and he said it was the fungus, tinea versicolor. I put the cream on my chest for a week or something and it slowly faded away. Unfortunately it would come back over the years and I found out that Nizoral shampoo works just as good as the stuff they give you at the docs, so I just started to self-treat.

Well just a few days ago I noticed a few spots on my chest. Then this morning I woke up and my husband your tinea versicolor exploded overnight. You had a few spots on your neck yesterday I forgot to tell you about, but now it's all over... I thought he was exaggerating just a tad, so he took a picture.

I look like a brontosaurus.

I hate you Night Sweats

Seriously I went back and looked at my blog's history at all the posts where I complain about night sweats and it's truly unbelievable. Why do I experience these all the darn time?

They have been coming and going again. Now that I'm on florinef, I have to assume it's NOT low aldosterone but looking back a few months ago I was experiencing night sweats when I was taking my DDAVP too. It is not normal to be drenched in sweat at night. Maybe once or twice a year, but not on a regular basis.

I made a post about this on the NTH adrenal yahoo group and a lot of people have them, but no one seems to know what causes them. haha I guess there's a group of us out there that deal with this annoying sleeping interruption.

Now for some exciting news. I am doing another modified water deprivation test to see how my body is concentrating urine now that I'm on florinef. My new doc said that he'd be willing to order the labs for me since all I have to do is just not drink water for 12 hours or so. A true water deprivation test is really involved and would involve a trip to a pituitary endo. Honestly I can't handle the hassle of going to a mainstream doc and will settle for this modified (slightly dangerous) water deprivation test. LOL If I get really sick, then I'll call it off. Don't worry!

I'll be weighing myself each hour to see what happens sort of like what they do with the real test. Obviously I won't be able to test my urine osmolality, but I have strips that do specific gravity which can give me a clue. If it's really low, then I know the osmolality is low too. Unfortunately high specific gravity readings can be largely inaccurate.

Just a little while ago, I had this terrible sharp pain in my abdomen and I felt very nauseous. It came out of no where, so I took some extra HC and bile salts. Thankfully one of those fixed the pain I was having, but I'll never know which one exactly.

That is all for now. I'm not taking the armour until my sleep is better, so we will see when that happens. I feel really tired right now and think it's about time to sleep. I just hope I can sleep throughout the night without too much interruption.

Thursday, June 18, 2009

Armour Not Going Well

Unfortunately adding in the armour is NOT going well at all. The insomnia is out of control. Today I was told by my doctor not to take any to see if my heart rate calms down a little. Just a moment ago I took my blood pressure and it was 124/76 with a HR of 119! This was upon standing so it is NOT salt wasting as my blood pressure went up rather than down. Obviously the armour has made me go "hyper" or I'm pooling the hormone in my blood. Regardless, this is the worst I have felt since starting the hormone replacement. I just can't take this dark depression I've been in for the past week and nothing I do snaps me out of it.

I have absolutely no motivation to do anything and would have no problems just staring at the wall for hours on end. That is one hell of a drastic change from me just 2 weeks ago where I was feeling fantastic.

Tonight I am curious to see how I feel and if I can even sleep. If I can sleep, I think that alone will help my mood lift.

Thursday, June 11, 2009

Eyes Seem Bad Today

For whatever reason my eyes seem pretty bad tonight. Lots of lights in both eyes and my floaters are driving me absolutely insane. GRRR! Sadly I know things will only get worse for me as time goes on, so I have to learn to live with this.

I completely forgot to post a picture of that burn I had a couple weeks ago, but now I can't find the camera it's on! It's actually healing a lot faster than I imagined, so that is good.

The armour is going OK. My temps have been running a little high, so I'm not sure what to think yet. I don't feel hyper at all, so I'm just going to keep taking it to see what happens!

If the weather cooperates tomorrow (and I can find the camera) I'm going to show you all what I worked on this past week.

Tuesday, June 9, 2009

Started On Armour Today

I asked my doc if I could go ahead and start Armour a little early since the DHEA isn't causing me any problems and he said sure.

Today I started on 1 grain of Armour. I split the dose of 1/2 in the morn and then another 1/2 at lunch time. I definitely felt a little different today, but I can't say whether it was a good or bad different. My temps were actually running a little high and I needed to stress dose the HC (2.5mg) which calmed me rather quickly.

It's also a pretty hot day here (well in the house at least), so I've been watching my salt-wasting symptoms and trying to remember to drink water. I took a 1/4 tab extra of Florinef today once I realized that it was going to be about 86 degrees in the house. Right now it says 85 and we've had fans running all day to get air circulating through.

I know most people will say that starting on 1 grain of Armour all at once is not right. I looked into this and saw that most people recommend 1/4 to 1/2 grain to start. I asked my doc about this and he said that he thinks that would actually make me feel worse. Sort of like when you only take 10mg of HC, it shuts down the ACTH feedback loop and you feel worse off than if you hadn't taken any. I'm keeping an eye on my temps which are definitely higher today, but it's also really hot the house too.

So far I feel pretty decent considering it's hot outside and I started the Armour. I had 2 things hit me today! haha

In 2 weeks I increase it by another 1/2 grain up to 2 grains total.

PS-- I think I got the old Armour formulation, which seems to be dissolving without any trouble. It looks like my hubby got the new formation, which he said tastes like butt. LOL

Sunday, June 7, 2009

Got my hair cut!

I got my hair cut and it's fantastic! I had about 5 inches cut off the end and went ahead with a side sweeping bang. I haven't had bangs for at least 15 years. When she cut it, the inner voice in me went---"Oh goodness what have YOU done!"---, but it looks so young, trendy and I love how it hangs
in my face. I know that sounds really strange, but I like having those pieces fall around the face. It helps to frame my face which is good.

I can now wear my hair up and can hide the final bald spot with the bangs!

With my new hair style, I needed a flat iron to keep the bangs from trying to flip out strange. I have a very slight wave in my hair, which normally I don't mind. However with the bangs, I need to get it as straight as possible so it doesn't stick out weird.

I have one coming in the mail and should be here in a few days! I'm so excited!

Friday, June 5, 2009

Findings at the Eye Doc's

Today I had my next appointment and things are OK. It appears that the "White without pressure" is in fact in BOTH eyes. I saw a different doc this time, so I've now had 4 people look at my eyes.

This doc said that I have way more floaters in my right eye than my left. I told him that I thought I had a few more but couldn't tell which eye it was in. Thinking that only left eye was an issue, I told him I just assumed it was my left eye. Well all of that goes out the window now. He said the peripheral retina thinning in my left eye is much more advanced than in my right eye, but he said he thinks I'm probably seeing lights in both eyes. Oh great!

He told me to avoid any heavy lifting and to pay more attention to the lights, when it happens and which eye it is in. Now that I know it could be either eye, I'm trying harder to figure it out. I told him the heaviest thing I lift is probably doing the dishes, which he was very happy to hear. He said that I do not need to be putting anymore strain on the eyes and that lifting something heavy could cause the vitreous to pull away from the eye...FUN!

I think I've had this problem for a long time now, but this is the first real eye exam I've had in about 15 Who knows long this has been going on for!?

That's about it. I have another appointment in 4 months, but if anything comes up I should immediately call. This definitely makes me feel a little better because it hasn't gotten any worse in a week's time. I am a little concerned about the long term though. I am certainly too young for the vitreous to detach/tear. This is something that isn't supposed to happen until you are in your 60's-70's.

Thursday, June 4, 2009

Some Blood Work

Here's some blood work I had done. It came back the day I went to the eye doctor, so I haven't been thinking about it much. hehe

I started on 12.5mg of DHEA yesterday on the advice of my doc. Then after 2 weeks take 1/2 tab twice daily.

Electrolyte Panel
Sodium 141 (135-145) Good
Potassium 4.0 (3.5-5.2) Pretty decent
Chloride 104 (97-108)
Carbon Dioxide 24 (20-32)

FT4 1.25 (0.61-1.76) Doc says the range should be 1.0-1.76
FT3 3.4 (2.3-4.2) Mid-range
TSH 2.095 (0.450-4.500) Little high
DHEA-S 24 (65-380) WoW!!

With these thyroid labs, my doc wants me to start on Armour in 2 weeks once I get the DHEA up to 25mg daily. He doesn't want to change 2 things at once, which makes sense.

Something weird that has come up out of no where is this strange pain near my right rib cage. It actually woke me up yesterday morning and was excruciating for about 15 seconds. Then it faded some--thankfully. It MIGHT be a pulled muscle, but I'm going to give it some time to see what happens. I have been doing some painting in the house, so it's definitely possible. heh I don't know why my muscles are so weak if that's the case.

Tonight my eye is not good. Very strange with lights near my peripheral vision, but I'm going to hang in there unless a shower of floaters come up out of no where. If that's the case I'll be calling the emergency number.

Sunday, May 31, 2009

What's My Eye Gonna Do?

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 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.

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.

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.

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.

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.

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.

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.

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...

Friday, May 1, 2009

Cat Pics!

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.

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.

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.

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 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 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!

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

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?

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!

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.

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.

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.

Wednesday, March 25, 2009

Salt Supping Is Making Me Blow UP!

Well I've finally figured out what is making me gain so much weight and I think it's the salt supping.

I've put on 12lbs since I start adding a little sea salt in water 2-3 times a day depending upon my salt wasting symptoms. My entire body looks puffy and my face looks like a balloon. I don't know what to do. My blood pressure isn't rising at all, so I'm not worried about that.

Not being able to fit into my clothes is a problem though and I've been too sick to deal with trying clothes on in the store. It's also difficult to even FIND pants these days since every store is ready for summer. I hate that...

130 is officially the heaviest I've been in probably about 8 years and I'm certainly not PROUD of that achievement. I'm going to lay off the sea salt and see what happens.

The past 2 weeks have been TERRIBLE for me. The fatigue is out of control. Anything that is stressful or requires extra concentration makes me crash within an hour. I tried target shooting and I couldn't even do it. The noise made me shake and I had a panic attack. Thankfully it was just me and my husband. We came home and I slept for 2 hours or so.

It's been a pretty terrible week, which is why you haven't heard from me.

Time to make coffee or I'll be going back to bed.