God healed me of Addison's Disease!

I do have some exciting news I wanted to pass along to people. The title of the post probably gave it away already....haha! I had been keeping this to myself for many weeks and have only told a few people.  I wanted to know for sure what was going on.

Several weeks ago my husband and I went to Dr. Roger Sapp's Christ-centered healing meeting in Indiana. It was quite a journey for us to go, but we really wanted to!!

Some Christians believe that sickness glorifies God or has some sort of purpose, such as teach them a lesson or make them a better person. Others have misunderstood Paul's "thorn in the flesh" or the story of Job and then use those as reasons for why they are sick. I don't believe in any of those so I have been pursuing Jesus as my healer.

For more info on what I believe, you can also read my post,  It is God's Will To Heal to get a better understanding too.

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At the meeting, we had a great time visiting with people and making some new friends. At first when I was being prayed for, I felt nothing at all. We prayed a few more times and just decided to let things ride out. Then I had some other people come over to pray for me. They asked what was wrong and I went through that whole mess..."what isn't wrong with me"...haha As I was being prayed for again, I felt a deep warmth within the core of my body, but it only lasted a short time. I did not think too much of it. That weekend we prayed for others and it was a great experience! One person, we later found out was totally healed of his heart condition. That was pretty awesome! Thank you Jesus!

On Monday the day after we got back, I realized I had forgotten to take my hydrocortisone. It scared me a bit, so I immediately took it. The next day, the same thing happened. I just forgot, but I decided I wouldn't take it unless I started to feel sick.

Usually when I forget to take my HC, things escalate within minutes or hours. It does not take long to know that low cortisol is setting in. First, I typically feel a bit off and my head hurts. Then I begin to get this nagging pain in my stomach or back. If it keeps going, then I will get chills and the pain will increase. This is usually when I begin to feel weak and incoherent and my husband would have to help me. If even more time went on, I would have severe nausea and then vomiting. I never let it get that far because that's adrenal crisis territory and that is serious business. You can go into a coma and die.

I wasn't experiencing any of those symptoms. I was being very cautious and keeping an eye on myself though. There were a few days I took 2.5mg because I was still a bit shocked that I did not need it anymore...hahah!

It has now been 6 weeks since that meeting. My heavenly Father healed me of Addison's Disease or adrenal insufficiency! I am no longer taking hydrocortisone when previously I could not wean myself off of it at all. I used to take anywhere from 15-20mg of HC on a daily basis. Many people in the chronic illness community can attest to this fact. :) I have hundreds if not thousands of posts on forums that confirm my need for hydrocortisone on various forums and groups.

There has been a few attempts over the years where I took it upon myself to try weaning down on my dose. It always ended up going really bad. Below I grabbed a few snippets from old blog posts to show you!

From my post, Ugh HC Weaning Isn't Going Well in September 2010:

"It's been another 10 days or so and my body cannot adjust to this lower dose of HC...I have moments of complete hearing loss in my ears for a few minutes at a time. I've been feeling sick to my stomach, almost flu-like without actually vomiting though and I've been having crazy hot flashes and chills....Yesterday and the day before I had to take more HC. I was sort of afraid that if I didn't I'd start going down the adrenal crisis path. Ugh. I just hate to admit defeat on this because I really don't want to have to take HC for the rest of my life. It's pretty frustrating."

The next day I gave up and started taking the full dose of HC again. 

From my post, Well that Didn't Work in May 2010:

"Going down to 15mg of HC was disastrous. It took me 1 day to realize that was a bad bad bad idea, so I'm back up to 17.5mg. I seem to do well here for now."

Going back and reading through all of that was amazing. Thank you Jesus, I was healed! There is simply no other explanation. Having been on steroids for more than 3 years, I should not have been able to go cold turkey like that any how, but I did! Over those 3 years I had tried SOO many times to come off of HC and it never worked. Just two weeks before this meeting, I tried to lower my dose and I could not do it at all...I immediately was sick.

I can't even tell you how incredibly happy I am about this. I no longer have to wear a medical alert bracelet. I always felt that thing marked me and it was awful. Thank you Jesus! I am set free!

Now I need POTS to leave my body in Jesus name and the world will never be the same. Watch out everybody! haha :) A healthy me, hasn't been around ever, so who knows what awesomeness will come out of it.

Update August 1 2013: I am still not taking HC. I continue to battle and stand for other healings, which have not come as easy.

No Longer Trying to Come Off HC

This was likely my last experiment. I guess I have adrenal insufficiency of unknown origin and I need to be done with it. Lowering my dose caused major high DHEA symptoms and my emotional well-being started to deteriorate. I finally just went back up to 15mg and am just done with it all. I really wish my doctor had done the appropriate testing to see if I really had a problem because now I cannot come off of it to test. Thanks doc! There is really only 1 thing I can test for while on HC and that is 17OH progesterone. You have to test it first thing in the morning, BEFORE taking your HC for the day. You want to see if this is elevated in the AM because if so, then that's pretty telling the pathway is getting backed up.

Once I went back on the 15mg of HC, not taking DHEA gave me major depression. It took about 3 days for it to appear (probably the amount of time it took for all of that extra DHEA to go down) and I felt like dying.

Now I'm back on 12.5mg DHEA and my normal 15mg of HC. Glad the latest experiment is over with.

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.

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.

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.

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.

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.

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...

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.

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.

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.

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.

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?

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.