Happy Halloween!

I'm going to start backwards and work my way forward since I'm writing this so late.

My twins went out to start trick or treating at 5:45pm and stayed out til just over 8pm. I think that's the longest time they've been out there yet! But they had a great time. They started out with cousins and ended up running into other kids from school. By the end of the night, they had a huge group of kids trick or treating together. I think that's cool to do it with a lot of friends. They were Buba Fett & a Princess from Medieval Times.

Hubby and I went with them along with MIL. My MIL and I conked out about an hour into it. Difference is, she's almost 30 yrs older than me. I just have no energy to walk much. But I did as much as I could. I'll probably pay for it tomorrow.

Before we went trick or treating we had gotten the kids from school at 3:30 and I went to pick up the pizza we ordered. Wanted to get it early this year instead of waiting last minute like we did last year. The kids hung out and watched some TV and then we ate dinner and then they got dressed up. It was chilly outside, so I had to make sure they were nice and warm under their costume. They were so excited!!

The kids ended up coming home from lunch at noon, then back to school at 1:15, for their school parade at 1:30pm. It was sooo cute! All the kids dressed up! You could definitely see the difference from the kids costumes as they got older. The younger kids had nice cartoon ones and as they got older, they were more and more scary. But the kids had fun doing that and the parents love seeing all the kids.

Now to the part about me...this is somewhat long.

I woke up at 7:15am and left for the hospital for my GH stim test at 7:35. Got into registration at 7:45am and was upstairs to do the test by 8:15am. Here's where the problem was tho. It seems all 4 people that saw the script that Dr. L gave me, didn't actually read it. It wasn't on a little script pad, it was complete directions, written out thoroughly on a 8 1/2 x 11" paper. Nor did they understand what the GH stim test was or what arginine is. They actually argued with me. They saw at the bottom of the paper that it said "Additonal Labs: IGF-1." So when I got up to do the test, all they did was take blood to check my IGF-1 levels. I ALREADY KNEW THEY WERE LOW!!! GAH!! They did something tho w/o even reading!!!!! How inexcusible is that?!?!?!?!? I was so upset, crying and just totally frustrated.

They tried to fix it saying the Cancer center could probably do it. So they called over there and said they could. I felt some relief thinking it would get done. Little did I know. When I got over there they said I was supposed to have a Cotrosyn test done. I was like WHAT??!? No.... (Least I know where I can get that test done tho, but that's another post.) I told them to read the whole paper. They were shocked and said they couldn't do it there. They didn't have arginine and on top of that, even if they did, they couldn't do the test because the Dr. that ordered the test was out of state. DUH!! Grr.. You can't imagine the tears that came and the frustration I felt. I hadn't eaten, or taken my cortisol yet (was going to take it before the test around 8am but forgot with all the frustration) so I was not in a good place. It was bad.

A nurse said she would help me, but I had to get a local doctor that was part of that hospital to write this script. And not just for the script for this test, but other things too. Like history & physical, medications I'm on, and the docs last progress note on me. Seriously ridiculous in my mind. But I need this test. So I will be seeing my Primary doc on Monday. Again. I'm sure he'll be happy to see me. *sigh* I pray he helps me.

I will also be talking to the hospital administration about the lack of care. I want to do something to help these people become knowledgeable on Cushings, but not sure it will happen. But I want them to be reprimanded one way or another. This was unacceptable. I was upset for a few hrs afterwards. Another week gone by w/o this test. I'm not feeling any better. I hurt. All over I hurt. It's just not right.

Busy day today

I had a somewhat busy day today. I guess to the normal person, it wouldn't really be busy, but for me it is. In any case, I had my appt with my ob/gyn. It went well I think. He thinks I should stay on the patch for now. I told him how the endo wanted me on other meds to give me a cycle. He explained it wasn't a cycle, it was just a "withdraw bleed." Meaning when meds stop, it induces a cycle. It's not helpful and could be more risky than not having a cycle at all. He said it was up to me, so I chose to stay on the patch for now. He said he would up my dosage if he didn't think it was enough. So I'm getting another estrogen check and also a testosterone blood check as well. So we'll see what that turns up.

The lab that Dr. L faxed the GH script too would not fax it to the hospital. How lazy are they?!? So I had to run and get it today, so I can take it with me tomorrow. I'm nervous about the test and what it will make me feel like. I'm already struggling without any added meds, so will this make me worse? I don't know. Dr. L says I can take my hydro in the morning and definitely recommended it so I don't go into AI. He thinks my numbers will be low enough, even with the addtion of the hydro. Again...we'll see.

Other than that, I felt better today. Still mild headache, but nothing a Pepsi couldn't fix. I'm late in writing this and I'm tired, so this is it for today. Wish me luck on my test tomorrow! *fingers crossed!*

I think I got run over by a truck

Seriously, I thought I was doing way too well the last few days. I figured my body was ok being off the extra 10mg of steroids since this last weekend. Guess it finally hit me. Right on time 4 days later. *sigh* That and having a cold doesn't help either.

OMG my head hurt so bad from the minute I woke up this morning. I'm sure it was a sinus headache mixed with a migraine. Ugh. I took my hydro, then soon after took the kids to school, came home and ate breakfast, took some Sudafed, and then napped on the couch for an hour or so. When I woke up, I drank 2 cans of Pepsi. I feel better than I did this morning. I also drank some Gatorade too. Make sure those electrolytes aren't going wacky on me too. I should eat lunch, but not feeling hungry. I'll prolly just eat some toast here in a little while. I gotta pick up the kiddos too. I need to go shopping to get some things from the grocery store, but I just don't feel well enough to do it. *sigh* I hate when I feel like this.

And of course this is hubby's school night, so he won't be here to help with the kids later. Hopefully they'll see mommy's not feeling so good and help me out. We'll see. Blah.

Nice shiny teeth

Went to the dentist today and ended up getting the stupid antibiotic for my rapidly receding gums. Hopefully it helps. I only needed 4 teeth done vs 12 from the last visit, so I opted to get the antibiotic. So I guess my extra brushing and flossing has helped. hehe! Also finally got my teeth cleaned. Only took 9 months. Sheesh. I have to go back in 3 months for another check up to see how the antibiotic is helping and then I'll get xrays. So now I have shiny shiny teeth. :D

Feeling ok today. My knees were more swollen than usual, but I think that's cuz it was raining/snowing out today! Crazy weather! I don't want to jinx myself, but since I've been back from Chicago, I haven't had a headache. Maybe the headaches prior to me going out there were just stress headaches... Who knows.

Sorry I've been MIA

I didn't want to post on here in case my mother saw, but I ended up going to Chicago to suprise my mother for her birthday. It was a big birthday for her and I wanted to be there for her. She's been with me through so much this year, I felt I had to be there. I surprised her and I know she was more than happy to see me. We hung out on Friday and then Saturday was her bday party. Of course I was the one that kept her busy Saturday while my father and others could get the party ready at the house. Then Sunday we had breakfast, shopped a little more and then I came home last night.

I ended up stress dosing (to 20/10) for the trip, cuz I knew it was going to be overwhelming. I did a lot of walking this weekend and it really wore me out! I felt sick to my stomach when I knew my body couldn't take anymore. That and my chest felt tight. It was very strange. If I got to sit and rest, I felt better. But I ended up taking the train and bus and walking a little bit with my brother, before we met up with my mom, and then I did lots of walking while shopping. I just don't know if I felt that way just because I was out of shape or because my cortisol was so low. Or maybe both, who knows.

I slept very well there and ate minimally. Again, for fear of getting sick, I didn't eat much. Usually breakfast, but I may have skipped lunch or dinner, by just snacking on something. Overall it was a very nice trip. And hopefully the last one of the year! FIVE flights in one year is a LOT. And for someone who hates to fly too. LOL

Anyway, upcoming plans. . . tomorrow I have a follow up dentist appt, Thursday I have my annual with my ob/gyn and Friday (drums play loudly here!) I have my GH stim test! YAY!! Finally! Hopefully it will give me answers once and for all. Then I can finally call Dr. L and tell him what I've been feeling and going through and hopefully they can help. I will probably need to adjust my thyroid meds. But we'll see after I get my blood test in the next two weeks.

So much going on. . . I just need to take a few days to rest rest rest!

Another update. . .19 weeks post op

Sorry it's taken me a few days to update.

My appointment with the new endo went ok. I had just wanted to get an idea of where I could get the GH test done and thankfully he helped me. But at the same time, he was very intrigued with my case. Like most doctors, he has his own opinion of what I should be doing to feel better. And as usual, I have no idea what to think. For now, I'm sticking with Dr. L's advice. The only thing that's up in the air that Dr. L doesn't deal with is estrogen replacement therapy. This endo says I should be having regular periods, whereas my ob/gyn really has no idea. I have an appt with my ob/gyn next week, so I'll be discussing it with him again then.

So for now I have TWO scripts to get the GH test done. But now I just know where I can take Dr. L's script. I've been feeling "ok" for the most part. The headaches, muscle aches and bone pain are my worst complaints. Otherwise I just deal with it. Caffeine helps the headaches and sometimes once I'm up and moving it seems to help the muscle aches. I don't know what will help the bone pain. It still hurts to lay on my sides. It doesn't even matter what side I lay on, my hands go hurting numb. I'm worried about that, but not sure what I can do. Hopefully it will all get worked out soon.

Looking forward to tomorrow

I felt ok yesterday and I'm feeling even better this morning. Yesterday I sat around and didn't do much at all. We did go for a small walk after dinner and I felt like I could handle it. Odd thing is my knees were aching after only 5 minutes. That can't be good. Otherwise I'm doing ok.

Tomorrow as you know is my appt with a new local endo. I am so hoping he can help me out with the GH test. And the ACTH stim test as well for that matter. Not that I need it yet, but it would be nice to have a script to know where to go. So we'll see...

Adrenal insufficiency kicks my butt

It seems my over emotional nature yesterday (and the last few days) has worn down my cortisol levels. It does it so slow, I don't realize what it's doing to me until it's too late. I knew I felt bad in general, but when AI hits, it hits hard and fast. A few things I learned last night...

1. Being so weak and unable to get up and move should be a sign things are going downhill.
2. Nausea so bad that I'm sitting over the toilet waiting to puke...another big sign.
3. Shivering like it was 20 degrees outside, even tho I was under layers of covers...bad sign.
4. The runs should be an obvious sign, but it's not. . .
   

In any case, last night was a long night. I was all over the place. I wasn't sure if stress dosing was good so late at night, but finally I figured feeling like that all night was worse. So I took another 20mg. I slept like a baby after an hour of taking it and through the night.

This morning I felt better, but still not up to par. My muscles and bones are still very weak. I still had little appetite too. I just rested all day tho. I did continue to take an extra 10mg at 2pm today (on top of the 20mg this morning). Tomorrow I'll cut it down to 5mg and then hopefully back to just 20 mg. I see a new local endo on Tuesday, so hopefully he can help me get this dang GH test done once and for all. Like before, I have a file full of all my lab results. Hopefully he will be as helpful as my PCP says he is.

For now, I just take it easy. And it's been noted that getting over-emotional can lead to AI as well. Will be more aware next time, or at least know to stress dose earlier.

In kind of a funk. . .

I'm not going to post of how icky and down I feel. I'm depressed enough as it is, I don't feel like writing it all down. Just two quick notes... 1) I have added a few pictures to earlier posts, so if you are curious, you can scroll through my blog and check them out - all the way back to when I had surgery. 2) The GH test isn't happening as when I called the lab, they told me they couldn't do injection type labs there. *cry* So now I have to contact a hospital to see if they can have me do it somewhere. So another week putting this off. I just know I need gh too, as my body feels like it's caving in on itself. I can't even sleep on my left or right side, as it hurts my shoulders. The actual bones of my shoulders hurt. It's weird and I'm sure bad at the same time. But until I can get this damn test done, I'm just screwed. :( That and I don't think my thyroid med is working. Another day wondering why oh why I had this surgery done. I felt so much better before this stupid surgery. *sigh* Damn. There I go crying again. . .

Slowly but surely

My back hurt this morning, so I made an appt with my chiro. Unfortunately, he said that my pain, was not spine related oddly enough. It was my muscles and bones. :( He asked if I was taking all my hormones yet and I said all but the growth hormone. He said that was what was probably causing the issues. He can tweak my neck and spine as needed, but it really didn't need it. He did put me on this light therapy that is supposed to help with inflammation. It did suprisingly enough.

But that's what is causing my arm and fingers to go numb. As soon as he hit this muscle in my lower shoulder blade, my arm tingled all the way to my fingers. *sigh* So as soon as I got home, I called Lab Corp again, to make sure the people there during the week didn't have my script. They didn't. I got their fax number again, to make sure Dr. L had the right one. Then I called Dr. L's office. They said they would refax it. I didn't get back to calling Lab Corp to see if they had it. I'll call first thing tomorrow. Hopefully they have it.

My dentist also called me to do a follow up from when they saw me in May. I haven't been good about getting back. They want me to take an antibiotic that is like $50 a drop. And put it on 8 different teeth. Uhm. I don't think so. Unless my insurance covers it. I'm not doing it. It's a tetrycylcine drug. Has some contraindictions with adrenal tumors and intracranial hypertention. Uhm. Again I don't think so. It's probably a small enough amount, but still. We'll see how bad a shape my teeth are in. I have yet to have any cavities (prolly just jinxed myself) but I'm not so great at flossing. And of course the cushings has worn away my gums as well. Not that they'd believe it. But we won't go there.

Tomorrow, I am in my daughters classroom for an hr and a half and then I'll be home. I have to actually run to the natural food store to pick up some vitamins. So I'll do that before I come home.

Yesterday, the kids were off school for Columbus day so as you know my MIL came up. I was zonked as usual by the end of the day. I changed my estrogen patch yesterday and I'm not sure if it was that or something else that made me not feel well. We went out for dinner and after dinner, I felt like I was going to be sick. I ate too much and it was going right through me. I ate a banana later last night and thankfully that seemed to help. I slept it off and felt better this morning.

Everything seems to be falling into place tho. Slowly but surely. . .

A little good news!

I got a call early this morning from my primary doc. He called me himself to tell me that he moved up my local endocrinology appt. Not a couple weeks, not even by a month! It's NEXT tuesday!! I can't believe it. He said I was such a complex case, he wanted to make sure I got the right help asap. How sweet is that?!!? Now I just have to organize all my test results, surgery info etc.

I also have to call Dr. L's office and see if they are there today. Let them know to recall the lab. Hopefully I can get that done before I see the local endo. We'll see.

Feeling ok so far today. The only thing that's bothering me right now is the wooshing in my ears. It sounds like it's my heart beating, but it's really loud. Drives me nuts. My back is also out of whack and unaligned. I need to see my chiro, cuz it hurts to lay on my right side. My whole arm/hand goes numb. It's a weird feeling. I'm sure it's not good.

In any case, I'll update again once I find out when I'm getting the gh test done. MIL is coming over today, so hopefully she doesn't zap my cortisol. I need all my energy. Maybe it's a Pepsi day. : )

Test didn't go through

Seems the lab didn't get the script for some reason. :( So I didn't get the GH test done today. I wasn't overly bummed, but still. I just wanted it over with. I'll have to call Dr. L's office on Monday.

Still felt ok today, but my knees hurt a little more than usual. Hurts to get up and get going, but once I'm up, I'm ok. Nothing exciting today. Stayed home and hung out. Not sure what we're doing tomorrow. Just wanted to update about the test. I'm off to bed.

Don't want to jinx it . . .

But this is the first time, I've felt a little better than I have in quite a while. I won't say I felt great just yet, but I didn't feel completely crappy. I actually got a little more stuff done around the house (w/o overdoing it of course). I ate well today and I actually got to go into my daughter's class today and help out! I love doing that! I was worried I wouldn't feel well, tired or whatnot, but I did just fine!! I was so glad!!

My son asked me today why we couldn't walk to and from school. I told him I wasn't quite 100% yet. He was very upset that I wasn't 100% and that I was still sick. And here I thought he'd be mad that we couldn't walk. Such a sweetie. I did promise them before it got too cold, we would walk again. I was gonna get up to 100% yet. He seemed happy with that. :)

Anyway, I'm going in for my GH test tomorrow, so wish me luck. I'm not even sure what to wish for on this test. I just hope it doesn't make me feel like crap. *sigh*

Why doesn't anyone want to learn?

I'm frustrated. I probably shouldn't be, but I am. I had my flu shot this morning as well as a meeting with my primary doc. I had hoped that my primary doctor would be more willing to learn about this stuff. But the more I explained, the less he listened. I had paperwork that I printed out from online to explain panhypopituitarism and it just went over his head. He put down that I had Addisons and I was in menopause. I tried as best as I could (which may have not been my best since I'm still learning about this too), but he still didn't care. It was very infuriating. Like I said, I know I shouldn't be bothered by this. He isn't an endo. I just hoped for more help. But he did say that he'd call the endo he recommended and move up the appointment. I really hope he can do it.

I wish I could say I'm feeling better yet, but I'm not. It's only been 3 days since I started the thyroid and estrogen meds. Another week or two and hopefully I'll be feeling better. Right now I just feel like sleeping. I'm still eating ok, drinking fine... Weight hasn't changed up OR down.

Newest symptoms: Paresthesia and twitching mucles in my legs

I talked with Dr. L's office and they are calling me in a script for the GH test. So I can finally take it this weekend. So I should get my answers on that next week. More than likely I'll be put on GH meds too. But we'll see. I'm just glad things are finally getting done.

Running on fumes

Sorry I haven't posted in a few days. It's been very emotional and crazy to say the least. This hormone stuff has finally hit me hard. I didn't even see it coming. I thought I was doing well, but I guess I was just dealing with all the side effects without knowing and they just got worse. That's why I'm glad I have this journal. I can see now that the exhaustion and the aches were big symptoms.

I've learned I have panhypopituitarism. Which basically means because of the pit surgery, all my hormones that the pit makes are not secreting enough for me to function "normally" causing me to have all these nasty symptoms. That includes - Growth Hormone, Thyroid, Female Hormones, and ACTH. I'm finally on Synthroid for the thyroid. I ended up taking the 150mcg that Dr. L wanted me to take. I'm only on day 2, but so far no issues. I haven't upped my cortisol yet, but will if I feel I need it. I want to see how this makes me feel first. If the thyroid dose is too high, I'll cut the pills in half. If I feel AI, I'll up my cortisol.

I'm also taking HRT to up my estrogen. It's a patch and I only have to worry about it once a week. Now I just have to find a place to get my GH stim test done. Then they can put me on growth hormone meds too. Hopefully once all those are working well, I'll feel better. Hopefully.

I've cried a lot over the last few days. I've even wondered if this is worth it. But it doesn't matter now and I have to deal with what I was given. I'm not dying of Cushings anymore and I can control my own hormone levels. There could be worse things. For now I'm just going to log my symptoms day to day until I feel "regular" again. I don't know if I'll ever be "normal" so I'll take what I can get.

Symptoms prior to Friday: Hot flashes, no periods, loss of libido, fatigue, headaches, aching/sore/swollen knees and muscles, and overall weakness.

Symptoms I recently noticed more obviously now: Hair loss & thinning (I had thin, fine hair to begin with so this is just bad), depression, difficulty concentrating and memory lapses, mood swings, anxiety, and cold intolerance.

I think those symptoms were there, just not as pronounced as they are now. All part of this hormone imbalance. I just need this all to even out, because as of now, I'm running on fumes. It seems my body got off "track", but now I'm back on track - just out of "gas." So I'm giving myself some meds (gas for the car) to up my energy level so I can manage through a very crazy holiday season. That on top of kids in school who are bound to come home with illnesses. It's going to be a long season. . .

I feel so lost . . .

My primary doc said all my bloodwork showed is that I'm anemic! We knew that already so I didn't even bother to ask the #. But they said my thyroid levels were normal. NORMAL?? Normal being: TSH=2.15 and my Free T4 being .75 - neither are normal. But of course I'm talking to the office staff and not the doctor. And when I tell them they need to talk to the doctor, they ask the other doctor in that office that I do NOT like and that doesn't know my case!!! GRRRRR!!!!! Next week I'm supposed to get my flu shot there, but I turned it into the shot AND an appt to see the doc I like, so I could talk to him directly about all this. So I have to wait another week to get answers.

I talked to my ob/gyn about the bloodwork for him and sure enough - I'm menopausal. :( He said I could go on HRT, but I don't know. I asked him what he thought and he said he didn't know. He said he's never dealt with someone with pit issue female problems. He said if *I* wanted to go on HRT he'd be ok with that, but I have to watch out for osteoporosis and all other signs of being on HRT. He didn't say (or wouldn't say) one way or another whether I should do this. I'm not a doctor tho? I don't know what to do?!?!?! *cry*

So no thyroid meds, no female hormone meds.... I am seriously a mess. I am just crying. I hate feeling like this. I feel so lost, like no one can or will help me. Hubby doesn't understand, no one understands. Dr. L wants me to come back out to have the MRI, the growth hormone test, the CST test and he can't do a thing with the whole female hormone issue. So where does that leave me??? I don't even know what's causing what?!?! There HAS to be someone that can help me LOCALLY!!!! *cry*

I found this site in all the research I've tried to do about it. This line jumped out at me: "Secondly, thyroid hormones have similarities with certain metabolites of estrogen and progesterone, and receptor sites for thyroid uptake can be blocked or facilitated by estrogen and progesterone. Imbalances of thyroid hormones T3 and T4, combined with imbalances of estrogen and progesterone, can produce many different consequences in the areas of mood, temperature regulation, fluid retention, energy and sleep. It's sometimes very difficult to answer the question, "Is it my thyroid, or is it menopause?"" http://www.thyroid-info.com/articles/thyroid-and-menopause.htm

I have another endo appt with a local endo, but not til Dec. I don't think I can wait til then. I can't find an endo to get me in sooner. They don't realize how badly I need help since I haven't seen anyone locally in over 9 months. *cry*

I'm eating ok I guess. Still minimal portions. Still no appetite. I'm still tired, but I can tell my diurnal rhythm is back. I do feel more awake in the morning and I'm exhausted at night. I can't stay up past 11pm. I tried to watch a movie with hubby a couple times and I fell asleep in the chair every time. I'm sleeping through the night and ready to wake up bright and early at 7-8am. I still have no energy to do much during the day. But otherwise, on the outside, I look ok. Just wish I felt that way on the inside....