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 PMS...lol All and all I am very pleased. I am trying to wake up at a more "normal" time, so my HC doses are right. Unfortunately today I woke up around 9AM, but that' isn't too bad considering our sleep schedule used to be really screwed up waking up at 8PM and going to sleep when most folks are eating lunch.

I think I might be getting some low potassium symptoms (chest pains, irregular heart beats, leg cramps), so I self-ordered some blood work through econolabs.com. I ordered a CBC with differential and a CMP (comprehensive metabolic panel) to check my blood counts, liver enzymes and electrolyte balance. As I was writing this I checked my email and the requisition form was sent to me email already! That was really fast.

I'll have to wait and get this checked on Tuesday because Monday morning we have to go to court and I'm already nervous about it.

Sunday, April 19, 2009

Not Much To Report

It's been quiet. My blood work still isn't back from the doctor, so I just continue to wait.

Unfortunately cutting back on the salt has not made all of the weight go away, so today I bought 4 new pairs of pants. Hopefully this will keep me covered for a while. I can tell it is ALL water weight though. My calves are very full looking again and I have been even more strict with my diet. Nothing is helping at all.

I hope this week I find out whether or not I have adrenal antibodies.

I raised my florinef yesterday. Now I am taking 1/4 tab, twice a day. It's helping me, but not enough yet!

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.