Quick update...

I'm going for my blood test tomorrow morning to check my cortisol again. Then soon after, I'll do a phone MEDEM with Dr. L to talk about the results and the few questions I have. My only concern is that he's not running an ACTH level. Isn't this disease all about that level?! So I'm trying to make an appt with my PCP to have him run an ACTH. If I can't get him to do it before my medem with Dr. L, I'll just ask Dr. L to do one then. I know how he'll react tho, saying that if my cortisol is low, I'm still ok and won't need to check my ACTH. Those of us that have Cushings, know otherwise. I'm getting up bright and early now, so I'm sure my cortisol is up there to make me get up. It's always been the ACTH I'm worried about. *sigh* I'm sure it will all work out. I'm not worried about it per se, more like frustrated.

But I do have my date to go back to Seattle. Nov 16th. I'll have an MRI then, a CST done to check my adrenals, and of course bloodwork to check pit function in general. We're hoping it works out that my mom can come with again. It's nice to have her company there.

As soon as I get my my bloodwork results, I'll post again.

Back from Washington, DC!!

Just took a 4 day trip to DC. Talk about a LOT of walking and a HORRENDOUS amount of heat there! I actually had to slow down a LOT and probably drank over a gallon of water a day. (Drank about half of my sons bottle of Gatorade too.) I did good tho! I was out like a light at night and slept good and was up and ready to go the next morning! I ended up taking my meds at about 7-7:30am, so I could eat before we were out the door by 8:45am.

We took the metro train (think subway) into the city and that was cool. Well it was hot as heck down there and there was a TON of people going to work, so it was a madhouse...but it was interesting to see nonetheless. Much nicer than the NYC subway stations too I might add!! The hotel and the museums were nice and refreshingly cold and all the stuff we saw was great. I wish the kids would've understood a lot more, but they got the basics.

We also took a bus tour, which was good for me to ease up on all the walking and that was very informational too. The one thing I wanted to see and didn't, was the White House. I was sooo bummed! I think I got a quick snapshot of the white house, but if you didn't know what it was, it would just be another scenery shot!!

Overall, I'm still feeling good tho. Ate way too much, and the food wasn't even all that great! My wrists are still acting up here and there, but for the most part, I only wear my braces at night. I tried to go w/o them one night and within hours my wrists were popping all over. It was a very uncomfortable feeling. So now I don't go to sleep w/o them.

I should be getting my blood test done next week to check my cortisol, then doing a MEDEM with Dr. L. We'll talk about my freckling and see what comes next. Then school starts in 2 weeks and the kids go back and it'll be quiet around here again!

Crazy overly eventful week!

Since Saturday night, I have not felt right. Upset stomach, weak, dizzy, and just overall blah... I have very little appetite and what I do eat seems to go through me.

Last Saturday, we went to Great Adventure. We had a great time and I did fine walking around. I even went on a few roller coasters, none real big tho. But of all things that affected me, it was the tea cups ride. The spinning set it off. I've never really had issues and maybe it's an age thing more than anything, but OMG I felt AWFUL when I got off that thing. Like I just wanted to lay down and sleep. And at the same time I felt sick to my stomach. I should've stress dosed at the time, but I figured it would go away. It didn't. So I took 5mg of hydro and went to bed. I was out like a light!! The next day I felt ok in the morning, just weak and a little queazy. I didn't do much at all, laid around most of the day and did go in the pool a bit later in the evening.

Monday and Tuesday, I hung around the pool with the kids, cuz it was so hot, for the first time this summer. I felt ok, but just didn't have an appetite. And when I did eat, I felt nauseous. Wednesday, we go to my IL's, where all the cousins, grandkids, etc get together to swim. Well of course it was raining that day and it was terribly humid. I don't do well in the heat. Again, I felt horrible when I got home. So bad, the kids had to feed themselves cereal for dinner. We all went to bed at the same time, cuz I just could not stay awake. My body needed to recoup again.

I was worried this morning, that this icky feeling would continue. I went ahead and took a full 20mg this morning in hopes that helps. Thankfully it did. I ate a little more today and no runs. I made sure to eat bananas and drink some Gatorade to help. I think it all did.

I know I did a LOT. I guess I still don't know my limits. I also just think maybe I ate something bad too. Or maybe too much sun?? I don't know. But all day today, I just sat around and really did nothing. It was raining out, so no pool time. I definitely needed that "down time." Hopefully tomorrow, I'll be raring to go again!! But I'll know to slow down a little and rest more!

14 month post op update!

Sorry I've been slackin'!! July was a busy month for us! Lots of playdates, vacation etc. The kids and I flew to Chicago to see my parents for 10 days. We had a great time! It finally hit me about something tho. Whenever I get stressed out, overdo it for the day, get worked up or upset about something, (or even have the runs in the worst way *blush* ) my body just gets REALLY really tired. All of a sudden I just feel like I could sleep, as if my body is saying "Quick! Shut down to recoup!!" hehehe!! I would be out like a light! Happened quite a few times while I was away. I've noticed it at home, but it wasn't as obvious I guess.

But I was totally fine on the whole trip and even enjoyed a good walking through the city of Chicago with my brother and a tour through the Harry Potter Exhibit. It was awesome! And then when we got home our inground pool was finished being built and we've been swimming in it whenever the weather allows! But the one downside is I'm freckling a LOT! Just another thing to worry me. I'm not having any other symptoms, but all over my face are these freckles!! My mom and even some of my friends think they look good on me, but I've never had them in my life!! So of course since my ACTH has been high, that's the first thing I think about vs the sun. Yeah, I've been spending time in the sun, but yes, my ACTH is up there. I dunno. I'm trying to get ahold of Dr. L to get a cortisol/acth level checked. It's been over 3 months, so it's time.

Other than that, we have another little vacation planned. Hubby and I are taking the kids to Washington DC to the museums and whatnot. Should be fun. Then school starts for them not long after that. I'm hoping to get back out to Seattle in November to get my yearly MRI and an adrenal stim test done. Waiting to hear back about that as well.

Overall, everything is still good! Really trying to enjoy my summer this year!! :D

Happy 4th...a year later!

I was reading last years post when I was just 4 weeks postop, and WOW how far I've come!! That was also the time when I had my pharmacy error when I had 5mg and 10mgs mixed together! Thankfully that was resolved, but I still to this day check to make sure!! I have all 5mg tablets now, so it's fine, but still. Ya never know.

I also feel better than I did then. I can wake up early and get up and go! I'm not tired and I'm actually getting my stamina back!! It was nice to go to the fireworks and really get into it with the kids. Although, they are getting to an age, they could take them or leave them. Ah well.

My wrists/thumbs are somewhat better, but I still wear the braces often and take Advil to help with swelling. I've also gone to my chiropractor, and he has this laser light that is supposed to help the swelling as well. However long I can put off surgery, so be it. :)

So I'll leave you with my annual picture of me and my kiddos on the 4th. Maybe I'll put a then and now pic from when they were just babies...I miss my babies.... Happy 4th tho! :D

De Quervain Syndrome

Yep. That's what I have now. Both my thumbs, but especially my right since I'm right handed, are in pain. It's basically a form of tendonitis. I have braces on both hands which go up to my thumbs and I'm taking a high dose of naproxen sodium to help the inflammation. *sigh* So it's hard and tedious to type. So I may not get to post much for awhile. Just wanted to update.

More info about De Quervain Syndrome.

Adrenal insufficiency or something else?

This weekend was really weird. Now this is going to be a little TMI, but for some reason I had a bad case of the runs this weekend. And as you may or may not know from previous posts, getting something like that WIPES ME OUT. I'm not sure if it was something I ate or a case of AI. All I know is that I couldn't do anything as I felt sick to my stomach, was weak and dizzy. I was afraid to eat anything for fear it would keep happening. I ate tons of bananas and drank gatorade to keep me hydrated. It lasted 3 days. That's it. Is that odd or what?

Now I didn't do much Friday or Saturday, but Sunday we took the kids to the Race Track to see the horses run. This was their first time and while I didn't feel I could handle it, I went anyway. I was cold all day and couldn't get warm and then those dang runs. That's why I think it was AI. Sounds like AI anyway. I mean it was 70+ degrees out! If we got in a shaded area, I felt colder! Again, just odd. After the races we went to play mini-golf and I chose to sit that out. I sat in the car and rested. We went to dinner after that and I ate and thankfully, since yesterday afternoon, I haven't had the runs. It's like it just stopped. I almost stress dosed, cuz I just wasn't sure. I've slept really good the last few nights, so who knows.

I really am going to start getting out to walk around the block. I've been doing an exercise tape, but I think walking would be better for me. We'll see. I'll get another cortisol/ACTH test done in August unless another doc tests it first. But that's a whole other days post.

Summer colds and GH deficiency

It seems I got lucky making it through winter w/o any colds. I didn't go into the kids school rooms to help out much like I did last year in hopes of keeping myself healthy because I was worried about ending up in the ER. Seems it's worked so far. But with the warm weather coming back, a cold finally found me. And it knocked me OUT. I was sooo tired, I couldn't breathe, and was even worried it might turn into a sinus infection. Thankfully, unlike before, this cold didn't last long! I was out of it for two good days and the others I just felt icky. I wouldn't say I have all my energy back, but I am feeling much better than before! I threw my sister-in-law a baby shower this last weekend and I think the stress of it all, lowered my immune system allowing the cold to find me. But now that that's all over, and the cold is gone, I can get on to enjoy my summer! The kids only have 4 more days of school!! I missed this last year, so I'm soakin' it up this year!! :D

Also, I took my blood test last Friday to test my GH and thyroid and they must have done it like super quick! Dr. L called me on Monday and gave me the results. Let me explain first. Three months after surgery I was put on .2mg daily of GH because my IGF-1 was 50 (and the low end of normal range was 109). After 8 weeks of that, I took another blood test which showed my levels were only at 100. So Dr. L moved my dosage up to .4mg for 5 times a week. I did that for a month, only to call him back saying my carpal tunnel hurt REALLY bad. He told me to lower how often I took it to 3 times a week and move it up when I could. Well 3 times a week seemed good for me and then when my carpal tunnel got bad again I had hoped I could either move down a dosage or even off it. I felt pretty good, had some aches, but it wasn't bad.

So as it turns out, when Dr. L called me and told me my IGF-1 was 65, I about freaked. I could NOT believe it. REALLY!? That's it? Then shouldn't I feel worse?? I guess all those aches and pains I've been blowing off have been because of that. I was just shocked. So instead of coming off it or even lowering. . . I have to go up in the # of times I take it. So I'm back to 4 x a day. I may end up having carpal tunnel surgery soon...but time will tell.

My thyroid levels were "normal" so I won't have to worry about that for a year now. I'll probably just keep an eye on it locally. I am also going to call my ob/gyn to go back on estrogen/progesterone again. I've been feeling kind of down and yet all over the map. I'm going to see if he'll give me the patch again. Hopefully that will help better than the cream - and I won't have to worry about taking it every day. Dang hormones. . .

Happy 1 year to me!

It's officially been 1 year since my first surgery. Saturday will be the year from my second surgery. But in either case, I'm doing well, I've come a long way and I'm happy!! I can only pray now that I make it through the next year. I won't be greedy. I'll take what I'm given.

I have a blood test on Friday to check my IGF-1 and thyroid. We'll see if I get to lower either of those meds. So we'll see. One year. Wow....

Still the fat girl inside...

I can't believe it's almost been a year since my surgery. All I can say is WOW to how far I have come! I'm happy and glad things have gone well, but that mind still has the Cushings fear.

As you've seen from previous posts, I get nervous when I start to have symptoms that may be similar to Cushings. I think most of those symptoms were due to me being off all female hormones. I've now been off those particular hormones for a good 6 weeks now. I feel good, a hot flash here and there, but otherwise good. My numbers came back low, so I expect to feel some deficiency symptoms here and there. But overall I feel good.

I'm still confused on the GH symptoms as I feel worse on it than off. I have to call Dr. L again soon to get my IGF-1 tested again. My carpal tunnel is just so bad, even on 3x a week now. I hope to God it's not permanent. Hubby keeps telling me to have the surgery done to relieve it; but I don't want to go there. Yet.

In any case, I wanted to share some new pictures. And my most recent thoughts about it. First of all, I have lost 35+ lbs and many more inches. I need ALL new clothes. I'm not a shopper at all, so I don't know where to start! I used to shop at Avenue, where it's all size 14 on up. But NONE of those clothes fit me. They were too big!! As it turns out, I'm down to a size 10/12 now. I don't think I've been that size since I was a teenager!!!!! My husband was telling me I was barely a size 14/16 when I met him!! Scary.

In any case, so last week I went to the store. I went to the misses aisle, but felt really WEIRD being there. Like there's a fat girl, searching in the misses dept. I picked up a few shirts, a few shorts and then there were the bathing suits. Oh geez. Bathing suits were the death of me in the last few years. Hated trying them on, hated to see what they looked like. But for some reason, I started looking at bikini tops. Could I?! Could I pull it off?!?! Nooo.... Maybe... So I grabbed two that I liked and tucked it between all the shirts and shorts. Didn't want anyone seeing this fat girl taking something that wouldn't dare look good on her. I was truly that embarrassed. But I tried everything on in the dressing room. Some things fit and some didn't. I left trying the bikini tops on for last. But I did it. The first one...ehh...maybe it doesn't look bad! The second one....wow. I just had to stand and look at myself for quite a few minutes. Is that really me in the mirror!?!? I actually liked it. I thought it looked ok on me. Now my bottom half is not as "nice" as my top half, so I just stuck with buying the top. I'll wear my bathing suit skirts that I have that will match as well. So I walked to the check out, and paid for all the stuff I wanted. I even got red when the lady checked out the bikini top.

I took everything home and tried on the top again. And again when my kids got home (aren't kids really the most honest people!?) and then again when hubby got home. Here's what they saw... And then of course the sideways pic...
Ok, so now that I've posted it, please share your thoughts. Don't get me wrong, I still have "love handles" I need to work on. And I still have the extra skin around my belly button from my twin pregnancy. It gives me something to work for tho (for the things I can work on). I like this person I see there. I may not be that fat girl on the outside like I was before, but unfortunately, I may always feel like it on the inside.

Feelings. . .

I'm feeling a tad bitter about this disease today. And not because of anything it's doing to me now, but what it's done to me in general. But I have to back up and explain.

One of my very best friends, who also has twins, just gave birth to her third child yesterday. We were both trying early on, we both had miscarriages, but she continued to try and I got sick with this stupid disease. She got pregnant and I got a tumor. Now I love her to death and I'm so very happy for her. But when I went to see her baby today, after I left, I got upset. Happy tears of course, but envious because I really had wanted to get pregnant again and to know what it's like to have a singleton. But because of what happened with this disease, I can't have anymore kids. Now that my pituitary and all it's hormones have been messed with, I can pretty much never have kids again. And even if I could get pregnant, I'm not sure I would. I would be afraid this disease would come back again, since I believe getting pregnant was what started this whole thing for me.

So then I started just crying, because I was just mad at what this disease has done to me. I wanted to blame something, someone, but I couldn't. And then I felt guilty. Guilty because I was lucky enough to even get pregnant, let alone with twins. I have a very beautiful girl and a cutie patootie boy who I am blessed to have. Yes they are growing up and are 7 now, but I know that some of the gals with Cushings don't get to have kids at all. All these feelings just surfaced tho.

After awhile, I was fine. I went about the rest of my day and I hugged my kiddos tight tonight. But will I feel those feelings every time I see her baby? Or even my SIL's baby when she has her baby in a few months??? I hope not. I want to move past this disease. I don't want it to make me feel bad. I'm past it and I don't want to think about it again. At least I wish it was that easy!!

Bout of weirdness...

I had a weird "feeling" last night. Probably cuz I overdid it, but I was fine, then all of a sudden I felt like I was going to pass out.

My son has had baseball games for the last few days (to make up for rain days) and by yesterdays game, I guess I was just tired! I don't know. I actually took my daughter to Walmart (cuz she hates sitting at his game and I can relate!), then we got to the field to see the last hour. I was fine at the game! After the game we went home, so son and hubby could change, and then we went to dinner. By the time we got to the restaurant, I just did NOT feel right. Woozy, like I couldn't focus and was going to pass out. Thankfully we got our drinks fast and we ordered an appetizer. I drank my soda hoping the extra caffeine would help. Thankfully after maybe 10-20 minutes it passed.

I'm not really sure what it was, but the only thing I can think of was that it was quite hot yesterday. I assume the heat takes more out of me?? I'll have to be wary of that as summer approaches. But other than that bout of wierdness, I'm ok. I just bought my new 'slimmer' swimsuit and I'll post pics of that in another post when I can download my camera.

Happy Mother's Day!!

I want to wish all the mother's that read my blog a VERY happy Mother's Day!! Especially those moms that also have Cushings or have a child with Cushings. Because being a mom with cushings around in one form or another, is very hard. Because as a mom, it's hard to be sick. You are the one that's in charge of everything. You have to do everything. Everyone relys on mom. It's also hard to see a child sick that you can't help or take away the pain. To see them get tests after tests... It breaks your heart to see them have to go through this. This disease is just evil.

So today is your day mom's!! I hope you get your time to be waited on and while the worry of your kids won't go away, hopefully you can give yourself a break for one day. We ALL deserve it.

My kids made me these awesome cards that made me cry. It was so sweet. Hubby made me breakfast and took care of everything for the day. It was sooo nice. We really need more days like that. ;) I hope everyone else had a great day too!

Weaning and Doctors suck.

Well, I was on 10mg for all of one day (Friday). I was so upset about the results I saw on Thursday, that I had decided to wean down to 10mg, since I assumed Dr. L would want me to slowly wean off so I could test. I was actually fine during the day, other than being headachey, tired and having no appetite.

Then I got a call from Dr. L's assistant that he could talk to me within the next few hrs. I was happy about that! He ended up calling me about 5pm EST. He basically told me to quit worrying. That those numbers really don't mean much to him. And because I don't have any symptoms that would signify that it was back, he says I need to stop worrying. When the Cushings is coming back, it will definitely show itself. The other symptoms I AM having, are probably due to to my other hormones - specifically the female deficiencies. Ok, that makes sense. He does have a way of making things sound reasonable. So he made me cautiously optimistic.

My local endo called me an hr after Dr. L did and I gave him the run down of my labs as well and he said I should be worried. I explained what Dr. L said and he - in not so many words - said Dr. L was wrong and I should be concerned. Talk about not helping me at all and bring me back down. I knew I had to think positively, but not knowing who to trust surely doesn't make that easier.

So I ate a little dinner, played with the kids (as much as my exhausted body would allow at that point in time) then within an hr after dinner, I got the runs horribly. Then I just felt like I couldn't keep my eyes open. I just wanted to sleep. So after hubby and I put the kids to bed, I went to bed myself. I think I fell asleep before my twins did. Then when I woke up Saturday morning and I had a horrible headache. So, I went back up to 15mg. I took it easy the rest of that day and let my hubby deal with the kids. I was feeling somewhat better in the afternoon, but it basically took me the full 24 hrs to recoup.

I felt some sort of relief in knowing I still needed the meds. I know I have to give Dr. L the benefit of the doubt since he's gotten me this far. But I will continue to have my doubts. But I can tell you for a fact, hormones AND doctors...suck.

I'm just so upset. . .

Went to see my ob/gyn this morning and he basically said I can stay off the female hormones. It seems my hormones are coming back, but slowly. My estrogen and testosterone were low, but within normal range low.

Here's the part I'm upset about. My cortisol was 3.4 and my ACTH............35. (Top range of ACTH is 48.) I can't tell you how bummed I am. It went up 10 points in ONE month. And while I'm glad in some small way to see my cortisol coming up, I'm scared and terribly worried overall.

I have a Medem set up with Dr. L for next week to go over all of this and see what he thinks. I just don't want this back...I just don't. It CANNOT be happening. I was crying after I left my ob/gyn's office. I have a feeling I know what Dr. L will say. Just keep weaning. Cuz we won't know for sure what's going on until I'm weaned off the hydro completely. Screw the adrenal stim test at this point. I'm just soooo upset...

Chiropractic visit

I went to the chiro today, cuz I felt my neck needed some "tweaking." So my chiro, who I think is an awesome doc, did his thing and I could tell the minute after he did it, I already felt better. But it was what he said that REALLY made my day. He told me my mucles and everything about my neck was sooo much better than it had been in the last year. Now I usually go in to see him about every 2-3 months depending on how I feel. But I guess this time was just different and he could feel it.

That made me feel great. When I don't have to say anything and doctors can tell things look/feel different or better - that's means something! I'm feeling better on the 15mg, somewhat. I still have that headache, but it's not quite enough for pain meds, but just enough to be annoying. Does that make sense? Not sure if it's a weaning headache anymore of if it's another hormonal headache. But I'll find out tomorrow.

I go see my ob/gyn at 10am tomorrow and I'll know the results of my bloodwork from last week then. I'm nervous and I'll probably be more nervous tomorrow. But for now, I'm good. :)

Day 7 at 15mg...and holding steady

I didn't feel too bad after the first three days at 17.5, so I thought I could keep on going. I'm now down to 15mg and am still trying to reach that "good" feeling again. It's been 7 days and there hasn't been 1 day that I have felt good. Between the headache, nauseousness and overall BLAH feeling, I don't know what to do!

I had my blood taken on Friday, and I have an appt with my ob/gyn on Thurs to find out what's going on. So I'll have results then. I'm nervous to say the least. What if my ACTH is still up there? I'm trying not to worry and because for the most part I feel good, so that should be a good sign...right?!

My daughter had the stomach bug on Friday night into Saturday and I took care of her. I had my mask on the whole time, so as not to catch it myself. And I actually did ok!! Before surgery I would get paranoid and freak out and put myself into a panic attack. This time, I handled it. My stomach was in knots and it didn't help my already nauseous feeling, but I did it! I'm hoping this is a good sign too.

Once I have this appt with my ob/gyn and see what my labs are, I will update. I will have to call Dr. L and schedule a MEDEM after that as well. So we can discuss my labs and he can refill my script of hydro with just 5mgs now. And maybe talk about if I should try weaning lower. But until then, I think I'll stay put at 15mg. :)

Updated pictures to go with my post...

This is what I call the "Jared look". If you remember those Subway commercials with Jared holding up his big pants. That's what I've done. I've gone from a size 22/24 to a 10/12. I can only pray it stays this way, cuz I'm enjoying it. I've had to go out and get all new clothes, but it's worth it! :)


This is the 22/24 pants and the 20/22 pants and below is me now (even w/a BELLY shot!).





































A total of over 60 lbs lost since this whole fiasco began. (I started at 231 and am down to almost 165, so I still could go down more, but I'm not gonna complain!) Please God let me keep this body. I will never complain about being this size EVER again. :)

Starting a slow wean...

I can't find anyone to do the adrenal stim test w/o going out of state, so I'm going to do it another way. I'm going to see if I can wean down. I'm on day two of weaning down to 17.5 and so far I'm ok. I have that horrible weaning headache and am fatigued - more so at night. The Excedrin helped the headache, but nothing can stop me from going to bed at 9pm at night. hehe!

Otherwise, so far, I'm handling it as well as can be expected. I don't have any cushie type symptoms that I'm aware of or recognize from before surgery. I'm even down 35 lbs since surgery. But since being on the estrogen cream and getting hot flashes all the time, I started to worry. But I stopped the estrogen cream and stopped getting the hot flashes. So maybe some sort of estrogen dominance? My ob/gyn seems to think so. I'll be off the estrogen for 3 full weeks come Thursday. I am taking blood tests to see what those hormones look like on Friday.

I also am only taking 3 days worth of .4mg GH. I was on 5, but then I had all those aches and pains - even after a month. So I stopped the GH for a week, felt great, then went back on to 3 days a week. I have yet to be able to go up higher than that. The symptoms are still there, tho not as bad as it was on 5 days a week. So I'm just wondering if my pit is waking up with all these things changing. For good or for bad, I want to find out. I've had no symptoms of thyroid changes, so who knows.

But I need to get more bloodwork to know for sure what the heck is going on. So I'll keep ya posted. :)

Journaling symptoms

I forgot what I really started this blog for. As a journal as much as it was to keep others informed.

I didn't get a chance yesterday to really say what else has changed. And I also wanted to update, that I did hear from my ob/gyn. Unfortunately he's just clueless. I really think he has no idea what to do with me. I know he wants to help, but this is out of his league. I hate that too. I hate that he won't be more aggressive. But that's not his style. I have an appt with him on the 30th, so we will talk more in depth then. If he can't help me more, then I hope he will recommend someone who can. He did say if I was feeling ok off the estrogen, then to stay off it. If I could stay off it for 3 weeks, then I could get a blood test done to see where my levels stand. If I can't make it that long, then I should get back on the meds. Problem is, it's not just the estrogen, it's the testosterone too (cuz it's a mixed cream). I don't know. I know this is a pretty good idea, so we can know for sure...but still. I worry about all this stuff, because I know the whole estrogen thing is cancer causing. And I hate that. I hate thinking about that.

On the GH side, like I said yesterday, I have been feeling better. I have just as much energy but without my knees swelling up, without my carpal tunnel hurting etc. I'm less constipated, I don't pee as much or even drink as much either and I have no joint pains like I did before. I have no idea if all that is connected, but as I said, I'm journaling what I do feel. So, today was the first day back to taking my GH. I'll take the next dose on Saturday, then next Tuesday. I've got it all spread out, then I'll work it closer together. I hope to eventually be able to manage on 4 doses a week. I think that's all my body needs. I think 5 was just pushing the limit. But we'll see.

I've also lost a few more pounds since coming off it too. I think that brought my cortisol down some. I almost wish I could test and see, but I know that would start a whole new worry. I don't want to go there. I get scared when I go there. Once I see a new endo and get this dang stim test done, then I'll know for sure. But that's another day's worry. :D

Quick Update!

I spoke to Dr. L last week due to the pain of my carpal tunnel and he told me to get off the growth hormone for a week and then restart at a lower dose and work up. It's been a week now and WOW what a difference. I still have carpal tunnel, but I haven't even slept with my braces in the last few days!! I thought I would feel worse too, that I would feel 80 yrs old again, but I don't! I almost am not looking forward to taking it again!! I know it's only been a week and I would probably feel it in time, but still. It's been nice not being in pain 24/7, so lets hope I can find the right dose going back up. I'm gonna start at taking it 3 days a week, then move up to 4. I THINK that will be an ok dose, cuz 5 days a week definitely wasn't.

Also, I haven't taken my estrogen cream for the last few days. I'm waiting from a call back from my ob/gyn to find out if it's possible for too MUCH estrogen to cause hot flashes. Because I haven't gotten them since I stopped taking the cream. Maybe between the higher dose of GH and estrogen it raised my cortisol some? And now it's lower again? I have felt a bit AI'ish the last few days... I don't know.

Dang hormones. . .

Dang this Carpal Tunnel...

I am so frustrated with how bad my carpal tunnel has gotten since I upped my GH dose to .4mg. I just sent an email to Dr. L in hopes that he tells me I can go down a bit. Now I'm only taking .4mg for 5 days instead of the full 7, but OMG my poor fingers!!! I have to wear my braces during the day now because it doesn't matter what I do, my fingers go numb. Like holding my cereal bowl if I eat in the living room, writing a note to the kids teacher, stirring something for dinner....

And laying down is the worst!! I swear when I wake up in the morning, my hands feel like they are 5 times their size. They feel like pins and needles and numb at the same time. :( I am sooo bummed. Dr. L did tell me it may get worse. But how bad do I need this much medicine? Do I continue with the meds and just get surgery on BOTH wrists?? *sigh* I'm just so bummed about this.

The other weird thing that's happening is that when I put my hands at my side, my fingers and knuckles turn red. Like all the blood is rushing to them. But my wrists and whatnot are still white. When I put my hands over my head they are white. When I have them the same level as my heart (give or take) they are fine. It's just when they are down by my sides. I've tried googling it, but have no clue why they do that. Is that another carpal tunnel thing or something else? If anyone knows, let me know...

Sorry I haven't posted in awhile

My twins seventh birthday just passed and it's been a whirlwind of craziness leading up to it and then during it. This was the first year we had two parties and it was overwhelming. I thought I could do it, but it caught up with me. My daughters party was at the house with 9 other girls. I was nervous and stressed. I felt sick to my stomach and had the runs. Thankfully I made it through the party itself. But when it was over (it was an evening party) I went to bed and was asleep before my kids. I thought I might stress dose, but didn't. Sleep definitely helped and I slept like a log.

My son's party wasn't as crazy, as it was at a bouncy gym. I just had to have cupcakes and favors. For some reason I was still nervous and still had an upset stomach that night too. But the morning after all these parties I was worn down, and two days later, I'm finally feeling better again. It's all over now tho and we're back to whatever "normal" is again. (My son is in one pic at the bouncy place during his party and the other pic is at my house with all the girls and their newly dyed and crimped hair. My daughter is the one in the pink polka dots.)

Aside from that, I'm feeling well. My carpal tunnel has been seriously acting up since I've upped my GH dosage to .4mg. I'm wearing my braces all day AND night now. I don't want to have surgery for that too tho. :(

I also wanted to post that I did speak with Dr. L and he is pretty sure I'm fine. He wasn't concerned about my ACTH level. He said I can do a stim test and that will be the thing that knows for sure. So I have to find a place to do it, otherwise I need to go back to Seattle. He also told me, in not so many words, I shouldn't see my local endo anymore. The urine test she wanted was ridiculous to order since I'm still on hydro. Which means she really knows nothing. So on to finding someone else...

Oh and I also wanted to post that I never got my cycle for this month. :( Since changing to the cream, it seems I need more estrogen I guess. I talked to my ob/gyn and he said to wait one more month and see if it just needs more time to kick in. If it doesn't we'll titrate the doses again. *sigh*

That's it for now tho. :)

Super Quick Update!

Just wanted to post that I talked with Dr. L briefly and I will be having a phone MEDEM with him on Tuesday. I'm hoping he can help make me feel better about things. I hate paying $50 for him to tell my I'm fine, but hopefully in so many terms, that's what he'll say.

I will post one way or another once I have that conversation with him. Pray for good news.

Got recent lab results...

I had my followup with my local endo to go over all my blood results. I'm even more worried now tho, as my ACTH is still going up. I know I keep saying that, but now my local endo has me worried too. She said, if I was Addisons, my ACTH should be REALLY high, like 60+. Being (pan)hypopit, my levels should be below 10. I'm right in the middle at 26. My cortisol is still 1.8. I'm worried something ectopic is still causing ACTH to rise.

My local endo admits she's not well versed in Cushings (especially postop), but in her opinion, I should wean down from my 20mg of hydro. I just emailed Dr. L to get his opinion, and I hope he emails back asap and can give me an answer. I'm hoping that's all it is, that I can wean and things will be "normal." But I know my record and it can't possibly be that easy. :(

My local endo is going to have me do another am cortisol/acth check and a UFC then I'll see her again at the end of the month. I'm not sure how the UFC will work while I'm still on hydro. She said if it's really high levels, I need to wean, if it's really low levels I don't wean. If it's normal - it's useless. That makes no sense to me. Again, hoping Dr. L will help out here.

Other levels to share too...

ALT (0-40 range) mine is 46.
AST (0-40 range) mine is 40. So my liver is already being messed up.

Renin (20-160 range for sitting) mine is 193.
Aldosterone (5-41 range for sitting) mine is 7. So going along with the cortisol, shows AI/Addisons.

DHEAS (48-247 range) mine was 13. Not sure what that means...
Estrodial/Testosterone/LH/FSH were all in "normal" ranges.
Prolactin is still 0.
IGF-1 (106-368 range) mine is 121 - so the shots are working!

TSH is 0
FT4 (range .61-1.76) mine is 1.33
FT3 (range 2.3-4.2) mine is 3.5

Cholesterol is good, VitD in lower normal range, Glucose/Sodium/Potassium/Choloride/Calcium are all on the higher end of normal range.

Overall, I feel fine though! I have had a headache this week, but not sure if that's from worrying about this appointment or cuz I'm due to have my next cycle any day now. Assuming this new cream protesterone works... I don't know tho. If YOU do...let me know.

A few ramblings

Well I didn't go Thurs to get my blood done like I said I would, but did go on Friday. I went early too, as I just wanted to get it done. But wouldn't ya know it, after I came home from taking the kiddos to school, I had a message on my machine. It was from the lab, saying they messed up and missed a test. Turns out they forgot to take my 'Renin' levels as asked for. So I looked it up online and saw it related to cortisol and aldosterone. Well when I got out of the lab the first time, I had taken my hydro. So I asked them if taking the meds would mess with the results. They swear it won't. But I want to know how do they know for sure. Are they doctors? NOOOO. So with my luck it will be all screwed up. Hopefully my local endo won't go by that alone anyway. I didn't want to go at all, but did. Now it's all done. And I wait. March 4th. Seems soooo far away, for just over a week away.....

Getting more bloodwork

I need to get more bloodwork done for my local endo. But I'm so nervous, I can't get myself to just get up and go. I don't know why I feel this way exactly. It's not even that I think it's the pit Cushings, I'm actually still worried it's ectopic. My last ACTH level was 22, with high range of normal being 48. I'm already half way there. What if the level goes up higher? Does that mean something? And then what if my cortisol is higher then the 2 it has been and the ACTH is high too. Oh the horrid thoughts that go through my mind.

Then on top of that I get paranoid that I drank caffeine or had chocolate (which has caffeine) etc. Don't want to do anything that will raise my cortisol anymore than necessary. I am also coming down with what I believe to be a chest cold. Again thinking the worse that maybe it's lung cancer, but the yellow mucous is telling me it's probably just a cold. You can see where my mind is going nuts tho.

On top of that, I've only been taking the estrogen cream for a week, and I'm already getting cramps. I haven't felt them since before surgery, so I'm not sure if it's good or not. I think it may be, but again, it's got me somewhat worried. Maybe I should've just titled this post "paranoid." Grr..

Ok, I'm going tomorrow to get my bloodwork done once and for all. I will have ALL my hormones checked and we'll know everything in the next 2 weeks. But ooohhhh boy will it be the longest 2 weeks.........

Quick Update!

Just wanted to post that I finally got back my lab results for my thyroid and GH. Turns out the dosage I'm on for thyroid is fine, levels are middle of normal range. Not what I expected, but I guess that's good. Still have days I feel like I'm cold, but maybe I'm just cold.

My IGF-1 unfortunately was still low. It was 50 before I started the Growth Hormone shots, but it was only 100 on the shots for the last 8 weeks. The low range of normal was 109. So you can see I'm still low, and so did Dr. L, which is why I need to up my dosage from .2mg to .4 and see how that does. I'm hoping I don't have to give myself 2 shots, but time will tell.

Otherwise I feel pretty good. I can't imagine how much more energy I will have upping my GH. I feel like I have more energy than I've had in a LONG time. Still have some small muscle aches, but we'll see. I will be going to get another set of bloodwork done for my local endo next week. Hopefully that will give me some comfort finding out what my cortisol #'s are. I'm getting paranoid. I hate that feeling. Nothing specific is going on, just little things like my neck aching and some headaches. I think it's estrogen and whatnot related, because I just started a new cream (no more pills yeah!!). But still. Peace of mind is a big thing! hehe!

Happy Birthday to ME!

Yep, it's my birthday today. The big 36. I'm just happy to be alive, cuz last year I wasn't quite sure I'd make it this far.

Anyway, nothing really going on. I got some blood checked today. Only thyroid and GH. Dr. L wouldn't check my cortisol or ACTH yet. Says it's too soon since we just checked in in Dec. Would really make me feel better, but nope. This is just a test to see if I need to titrate meds again. Fine. I have an appt with my local endo in March and I have to do a full hormone panel for her, so I get it done anyway. :P

I'm also a little bitter, because now Dr. L is telling me I don't have to come out til next December. Really. For an MRI (which I just did here in Dec) and to have more blood taken. Honestly, IMO, what a waste. I want to keep him as my endo because I'm still worried about all this, but can't we just communicate long distance? Since that's what we're doing now??? I don't know what to think or do. I had planned on going out early, but he said no - it wasn't worth it. By that time we should have titrated all meds to the appropriate dosages. Probably true, but still. I can tell you one thing, I'm not going in Dec. I will definitely go before then, if I DO decide to go, one way or another.

Anyway, I'm not doing anything overly special today. Hubby has grad school tonight after work. So we'll do something together another day. The kids are cute and made me a few things and a card, which makes my day. I'm also planning on going out with one of my best friends and her twins for dinner tonight. Two adults and four kids...should be fun!! :D

An amazing quote from an amazing man

"We are the orphans. We are the zebras in a world of horses. The ones who have a rare disease many have never heard of. We have no famous speakers to bring life to our voices. We have no sports stars to put a face on Cushing’s. We have no pink ribbons. We have no simple tests to tell us if we have it. If no one cures us, our lives will be shortened at best and ended at worst." --Steve Owens on "Should Have Seen It"

I felt the need to post this from Steve's blog because he just has a way of saying the way it is and he says it so well. Steve also has Cushings and tomorrow he's going back to surgery to have a BLA (bilateral adrenalectomy). He had a pit tumor, and went through the pit surgery, but unfortunately it didn't work for him. So the BLA is the next step. He will be blogging his surgery and recovery, so if you are interested in reading more about him, check out his blog: "Should Have Seen It." We're thinkin' of ya Steve!