Forgetting HC Doses

Ever since this last round of DMPS, I have been completely forgetting HC doses. I woke up today and I have no idea if I took it or not. I don't think I did, but then I don't feel like I did not. Hmmm Is this is a good sign or am I just getting more forgetful? haha

I think I could probably go down to 12.5mg without any consequences. Something has changed for sure. One day I only took 5mg and did not realize it until 11pm. I am cautiously optimistic. I'm not sure what this means for me right now and I'm just playing it by hear.

Also I should start up on DMPS again here real soon. I never got any hives! I had some skin dermatographia, but I can handle that without any issues.

I should also note that I have been trying a few other things lately. Right now I am taking Body Biotics probiotics. It has definitely slowed my bowels. Maybe a little too much. I am also taking something called Beta-1,3D Glucan. This is supposed to help the immune system. It's all things my husband researched and told me to take. haha!! I am so thankful my spouse cares this much.

Rant About Hydrocortisone Use in Adrenal Fatigue Patients

Hydrocortisone Use in Adrenal Fatigue: Is it really as good as "they" say?

Today I have decided to rant about using hydrocortisone in those with adrenal fatigue, CFS and any of those non-descriptive syndromes or illnesses.

I have finally had enough of the nonsense and need to speak my mind.

When I started this blog, I was very naive and had no idea what I was getting myself into. When I did research about adrenal fatigue, all of the websites made it seem so easy. Just take some "adrenal support" and you'll be bouncing back like new in no time. Yippee!  I can tell you first hand, they were quite WRONG. Over the years I have realized that these websites paint a very happy, cheerful journey, but in reality it is a long painful journey. They may not willingly know, but they have started a very scary movement of people, telling most to skip going to endos and simply seek a natural doctor who is willing to prescribe HC. Some of them even suggest self-treatment, which is a whole other topic.

Mentally Preparing Myself for Cleveland Clinic

I called CC today to just get some more information on what I'll need to do. It looks like I might be needed more than 1 day, so we are going to have to make some arrangements.

I know that my adrenal insufficiency diagnosis is going to be a problem with this doctor. I told the assistant on the phone, that I wanted it noted on my chart that I have this so it's not a surprise/problem when I come in next week! It is with every single doctor I see.

"Yeah...I never had a stim test." As soon as those words come out of my mouth, the doctor will probably go into the "well it's not good to be on steroids if you don't need them and they'll make your bones crumble". I can already hear it now. So I'm wondering if this doctor is going to poo-poo it or want me to see one of their endos. HAHA If they are willing to put me on Dex and then do a stim test, I say bring it on! There's no way I can come off the HC as I'll likely go into crisis. I couldn't even lower down to 15mg! And...there's no way my adrenals haven't atrophied over the past year on HC. They won't likely stim whatsoever and then I'll have my nice Addison's diagnosis. I still have to wonder about my mildly elevated 17-OH progesterone. My hormone doctor immediately dismissed it, saying it wasn't "high enough". I'll never know. I've seen some info that late-onset CAH usually doesn't present itself with the crazy high levels until stimmed with synthetic ACTH.

Since it's warm out, I really need to be on florinef. It's killing me. My sodium is dropping (new blood work) and I just feel terrible as soon as the room heats up. Gotta love those salt cravings, which are nearly impossible for me to cure since I've stopped eating vinegars (olives, pickles) and all wheat (crackers, pretzels). I had one of those awful headaches yesterday and since I wasn't on any florinef, I'm thinking the headaches might actually be low aldosterone or low cortisol!!! I'm realizing that lowering my dose hasn't been so good (took a few weeks!), so I'm taking 20mg at the moment dosed 10, 5, 5 So..I'm going to try taking florinef again. Tomorrow I'm trying 1/4 tab of florinef and going from there. I'm not worried about it messing with my tilt test because it didn't before.

All I hope is that CC takes me seriously and runs tests. That's all. I don't need to walk out of there with a solution or even any new meds in my hand. I just want to get enough testing done to determine the type of POTS I have. Is this a mitochondrial disorder? Genetic disorder? Blood pooling in my limbs? High catecholamine levels? If I can get some answers to those questions, then I'll be satisfied. I truly think I have something WRONG with my body. I've been trying to do some leg exercises lately. Oh my gosh, it's soo awful for me. Today I woke up feeling pretty damn good with no headache. Then I did a bunch of leg raises (while LYING DOWN) and my heart was likely 150+. Leg exercises are worse than arm exercises for me, which isn't supposed to happen...I don't get it anymore and I don't even try to get it.

Well that didn't work...

Sometimes you have to take things away before you realize how much of an effect they were having.

I sincerely forgot to take my beta blocker a few days ago. Well I didn't notice any problems, so I thought I'd "forget" the next day. I went 2 days without any problems whatsoever. My heart rates have been high since it's warmer out now, so having high heart rates wasn't alarming to me. Today, I purposely did not take the beta blocker. I didn't think anything of it and was going about my day. I noticed my heart was beating REALLY weird. I thought it was odd, so I started to feel my pulse and I could actually feel the skipping beats. I've never ever in my entire life have felt my heart do what it was doing today. It scared the living &%#^ out of me.

I realized that I needed to take the beta blocker and see if it got my heart beating back on the right track. It was all over the place. It would go really fast for 4 beats, then slam into my throat really slow, speed back up and rinse, repeat. All of this was happening as I was trying to find a new pair of pants to buy! haha I was sweating in the dressing room and just felt soo uncomfortable and even nauseous. It took 45 minutes for the beta blocker to kick in and then all of those crazy beats disappeared...completely. I have no idea what happened to me today, but I was ready to go to the ER. I didn't even think to take my BP today. /SIGH

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.

In 2 weeks I am going to Cleveland Clinic. I have to get all the paperwork (labs) ready. I was trying to be off the beta blockers for the TTT, but I'm not sure I can even do that...

Lowering my HC

This is one aspect of my treatment that I've never changed, so I've decided to start slowly wean down on the HC. Originally I was on 30mg of HC and that was way too much for me. Then I went down to 25, 20 and now I've been on 17.5 for about 3-4 weeks.

Today is my first day at 15mg and I'll hold steady here for a few weeks to see how I am reacting to it. I want to be on the least amount of HC as physically possible.

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.

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...

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 Cortef Saved Me

I survived a stressful Thursday. This is the first time in a long while, that I had an elevated stress level. When I woke up, I immediately took 10mg of Cortef. Then right before leaving I took another 10mg of Cortef.

That's quite a bit of Cortef to take within 2 hours, but I needed it. I came home and literally crashed. Yesterday was a terrible day. I was irritable, ready to cry and could barely move. I was so tired that at one point just fell asleep on the couch. I attempted to bake something and couldn't even finish it out of frustration. Why didn't I take more cortef when I got home? I didn't have any left. YIKES! The day prior to this, I attempted to fill it. That way I'd have a full bottle for Thursday. Well the pharmacy had to order it in. I thought this was a standard in-stock medication, so when she told me they didn't have it I actually got a little sick to my stomach. "It will be ready after 1PM" Oh goodness!

We waited until 1pm and picked up the cortef. This time I was given the generic type, called Hydrocort5. I wasn't familiar with this, so I didn't take one until I got home just to make sure it was the right medicine. Of course I didn't notice this until I got in the car! haha

I checked it online and it was the same as cortef and I took another 10mg. It calmed my nerves and the irritability subsided. However, I was still very fatigued. I just think that I had crashed, so there was no coming back.

My head is not very clear today. Just writing this blog entry has been difficult. I'm using the wrong words, typing things that make no sense. I keep deleting and re-typing my thoughts.

Now I must wean myself down off of such a high dose. You are only supposed to lower HC by 2.5mg every week until you are off of it completely. We'll see how lowering it goes. I really want to get these labs done.