Showing posts with label Diabetes Insipidus. Show all posts
Showing posts with label Diabetes Insipidus. Show all posts

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.

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.

Tuesday, April 7, 2009

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!

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.

Saturday, December 27, 2008

Today Has Been Interesting

I was having a pretty bad achy, rolling type chest pain on the left side last night. Considering I am 24, I wasn't suspecting a heart attack. I prayed about it and asked God to tell me what to do in the morning.

Well I woke up with a UTI. HAH! ...and I went to one of those walk-in urgent care places to take care of that. I didn't want to have this all weekend! While there, I decided to tell them about my chest pain. Hey why not? I'm already here! God works in mysterious ways. I don't appreciate the UTI, but it did get me to the doctor....Well I ended up having a chest x-ray done. Doctor told me she didn't see anything out of the ordinary on it and didn't know why I was having the pain. I am not completely sure what she was looking for. Perhaps pneumonia or a cracked rib?

Right before we got home from the urgent care, I was seriously considering going to the ER. It started to get really bad. Went from my left side to my back near the shoulder blade then over to the right side. I've been sucking it up because I feel like I'm going crazy. I think I should have gone to the ER tonight, but we had been sitting in that urgent care for a LONG time tonight and really didn't feel like waiting another 6 hours in an ER. /sigh I'm sure it will hurt really bad again some time soon. All this bizarre weird shit has been happening to me and I am starting to feel like I have finally lost it...I'm not making all of this stuff up. These past few weeks have really just been pure hell for me.

The chest pain is basically all the time now. Doesn't matter if I am holding my breath or not. It goes through periods where it is REALLY bad and then it is tolerable. It isn't a sharp pain though. It gets very very achy. I can't even describe it properly.

The doctor at the urgent care told me a radiologist will look over the films and if they disagree with her analysis I will be called. I guess this is good. That way I know someone who is trained to look at these films is taking a glance at it. Maybe they will see something on here that the doctor didn't see? I took a glance at it and it looked like bones to me. HAHA

One good news is that my thyroid ultrasound came back completely clean. There aren't any nodules or cysts anywhere on it and it is the appropriate size. I bet this has that PCP really confused. Oh noes!

The doctor at the urgent care told me my urine's specific gravity was really really low...That's not good. She said it was as low as the machine detects...UGH. I guess I need to start taking my DI meds again. She asked me about it. DI is the only thing on my charts there.

It is really funny when I come into contact with doctors who KNOW what diabetes insipidus is. I can tell when a doctor has NO idea what it is. They try to hint things that would pertain to diabetes mellitus and I immediately have to step in and say, I have diabetes insipidus. One of these days if I am ever in an accident or something, I swear I'm going to be injected with insulin because some dumb doctor doesn't know what DI even is! That will be one fun malpractice lawsuit.

Onward with my DI story. Doctors who KNOW DI, start asking all about it like I'm some type of mystical unicorn or elf. She was wondering how they diagnosed me with it and I just told her I was having dehydration symptoms and couldn't figure out why since I was drinking water all the time. That was the easiest most precise answer I could think of and it satisfied her. :-) DI is pretty rare. Most PCP's will NEVER see a case of it during their entire career. I can thank the mercury poisoning for that one.

What's next? I see myself going to the ER this week. That's probably what is next.

Monday, August 25, 2008

Kooky Machine: ETASCAN (Updated 2014)

Author's edit October 2014: Now that I am a born again Christian, I cannot in good conscious keep this post as is on my blog. I have had to edit things out because I believe tests like these are New Age and/or in the very least leading people astray and into New Age treatments. When I had this done, I was amazed at how it was able to "read" things about me, but I truly believe there is a spiritual aspect to this test that is not compatible with Christianity.

I do not agree with this test now and I have had to repent for many of the things I did in my healing journey. I do not want to cause someone to stumble.
__________

My journey begins when I went to Dr. Wagner's Nutri-Farmacy. I have written about him a few times on this blog. He's the first person to test my hair for metals and I found out that I had lead from my bath tub! The last time I was in, I was showing him my heavy metal challenge test results. He was pretty insistent about getting me to scan on this machine that supposedly measures some sort of frequency waves in the body. I am not exactly sure about it, but you can read about it on his website in PDF here. This wasn't him out to make a buck because he has given me stuff for free and discounted many many times. He is a very charitable man.

I decided to schedule an appointment to use the machine--why not? I went into this appointment with a smirk on my face. Part of me wanted to see the machine say I had a tumor on my nose, so that I could laugh at it and move on. However, what was shocking was how extremely accurate it was. (edit: How can a frequency machine be accurate? I believe there is a demonic spiritual component to it).

There is a sheet that you have to fill out beforehand. The things you check are added into the computer, but I didn't really see this have any bearing on the results. Not many people know what diabetes insipidus even is, so when I wrote that down on the paper Dr. Wagner looked at me and was like...you wrote down diabetes? I replied, Yes, I have diabetes insipidus. It's water diabetes. Not sugar diabetes.

For those of you who do not know what diabetes insipidus is, then let me give a very very brief explanation. I have a blog concerning this which you can find in my profile. Diabetes Insipidus is when your pituitary or hypothalamus are not properly working. Both of these "glands" are found in your brain. Your hypothalamus produces a hormone called antidiuretic hormone (or vasopressin). Then the antidiuretic hormone travels to the pituitary gland to be stored for later use. The antidiuretic hormone is extremely important because it tells your body to conserve water if it's hot outside or if you haven't drank any fluids recently. Next time when you don't drink much water on a hot day, notice how dark your urine gets. Well with diabetes insipidus it is almost always clear no matter what.  (Edit: The diagnosis of Diabetes Insipidus was a misdiagnosis along with many other things I had been told over the years. I simply had POTS, which causes frequent urination).

You can become severely dehydrated quickly simply by forgetting to constantly drink water as you are sitting at home in air conditioning. This is something most people do not understand. It can be a serious problem if not under control.

I put the headphones on to begin the scan. The most ridiculous aspect of the whole thing are the headphones. In order to get an accurate reading of the heart, they stick you all over with wires that read your pulse and blood pressure. But I am supposed to believe that headphones can read the frequencies in my body? RIGHT...

The machine begins to scan and everything looks pretty good. Yellows mean high energy. Red and blacks are very low energy. Then I started to notice my energies start to get lower. My intestines, rectum, a small portion of my stomach were some yellows with a large number of reds and a handful of blacks. This was interesting to me, but I really don't have bowel problems.

Then we got to the brain. Everything was looking good. YAY! I had an MRI done about 6-7 months ago, so I knew everything was all right. Since my sister had a brain tumor at 26 you can never be so sure these days.

I look on the computer and I see pituitary, hypothalamus, adrenals and thyroid coming up. I have to admit that I got a little excited. Dr. Wagner was not in the room at this time, so I was reacting to this stuff alone. The hypothalamus came back really good with A LOT of yellows. That was encouraging to me. Then came the pituitary-anterior and posterior scans...I seriously could not believe what I saw. It was all reds and blacks. It was by far the worst thing I had seen on the scan yet and this is exactly what I have wrong with me. The adrenal scan wasn't great, but really wasn't that bad either. My thyroid also had some reds and a few blacks, which wasn't surprising to me either. My blood was mostly black with some reds. That was quite alarming to say the least. (Edit: Again in conventional medicine, none of this can be confirmed because I was misdiagnosed with many conditions that I did not have. I had Postural Tachycardia Syndrome, but no one knew and this machine did not pick it up).

This is where it starts to get really interesting, yet unbelievable. When the scan was completed, Dr. Wagner goes back in and looks to see what is causing the body parts to be red and black. It can be viruses, toxins, allergens, or food intolerances to name a few. Therefore it could have shown so many different things. For the pituitary gland the first toxin....was MERCURY. I am not making this up! On that list I also saw gadolinium which scared me. That's what is used during an MRI...Not everyone's pituitary is going to have gadolinium in it unless they had an MRI in the past year or so. This is when I became a believer. (Edit: Amazing and terrifying that I used the word, "believer" back then when I wrote this. I think it's telling that I was agreeing with the spirit that was involved in this machine). 

Honestly I have absolutely no idea how this thing worked... (Edit: It is spiritual and not science. This is how New Age sneaks in as it disguises itself as energy medicine, healing frequencies and vibrations). It totally defeated all common sense my brain operates on. Headphones can't read frequencies, right? haha I'm going to head back again and see how I am progressing with the "energy solutions". It's a running joke, but I call them "water drops" ...But I may be laughing at myself in the end if this can help me get well.

Edit: These water drops did absolutely nothing for me except make the machine move on to other new spots that needed "help". 

Please read these....
Part 2 (More areas are now black..Oh no!! /sarcasm)
Part 3 (Where I realize the whole thing is garbage).

Thursday, April 3, 2008

It's Not Adrenal Fatigue After All...

Yeah that's right. I don't have adrenal fatigue. haha! What I have is even more bizarre and it's called Diabetes Insipidus. No, this isn't the Diabetes where you eat too many sweets. This isn't the one that the news talks about all the time or the one your doctor warns about.

Diabetes Insipidus is when your body doesn't properly retain water balance in the body. The typical signs are being thirsty constantly and urinating frequently. The exact reason why I have this my doctor and I are unsure of, but it has something to do with my pituitary gland or hypothalamus in my brain.

I am starting a new blog about Diabetes Insipidus and will likely abandon this one for good. However I am not deleting it because I think keeping information like this up on the web is good. Someone in 3 years might come across this somehow the search engines and learn more information.

I should also add that I did have my aldosterone tested and it was terribly low. However, that points towards a pituitary problem, which we know I have.