Happy Thanksgiving!!

Hope everyone had a great thanksgiving and enjoyed their feast! I hope everyone was thankful for something or someone in their life. Me... Well, aside for my family, I'm thankful for my health and all my cushie friends that have been there for me throughout this journey. This would've been a harder/longer road to travel without them. This includes my doc in Seattle too. If I hadn't gone to him, I'd probably still be sitting home getting the run around. Yet here I am feeling amazing with my wonderful kids!!

Happy Thanksgiving!!

Rest of the results!

Ok, well the Nurse Practitioner called me yesterday to give me the rest of the results from my trip out there. So here they are:

Cortisol: 1.0 (range 4-23)
ACTH: 30 (range 6-48)
Cosyntropin stim test: 3.4 (18.1 or higher to know adrenals work)
FT4: .66 (range .93-?)
IGF1: 72 (range 109-?)

Dynamic MRI: no tumor or changes found

He didn't check my female hormones, since he really doesn't mess with that. I'm still trying to deal with those hormones here at home. But the ones above show I'm hypothyroid and still GH deficient. My ACTH is still on the higher end, but down from what it was just a few months ago when it hit 35. So I'm trying not to be concerned. It's hard, but still. I just don't understand why it's high and I don't think he can explain it either (or wants to!).

In any case, I don't have to go back for a year and we will do a cortisol recheck in 6 months via Medem. I don't have to have another MRI for 2 yrs or if I should recur before then. So not nice to think about. Blah.

But overall for now, good news! And I'll take it! :)

Back from Seattle with SOME results!

Ok, so my trip was nerve wracking yet exciting! It was also very emotional, cuz I've gone through so much there and have met so many people there and I still watch them to this day continue to struggle while I move on. . . :( I'm thinkin' of you guys and I hope you get answers soon!!!

But overall, thankfully I got good news. At least for now anyway. My morning cortisol was only 1.0 and my Cosyntropin stim test only stimmed to 3.4 (that's 1 point up from last September when I had it done & when it stimmed to 2.4). So it seems my adrenals are still asleep, as Dr. L likes to see a stim of 18 or higher to know the adrenals are awake. I don't know what my ACTH #'s are yet, as they didn't have them. Dr. L still said not to worry about ACTH levels yet tho. But I can't help it. They've always been high, so it's still concerning. He thinks if they are in the 20-30 range that my adrenals could be waking up at any point. He said I may in the near future try to really wean down more. So we'll see. Until I get those results, I'm not gonna think about it. I still feel great and I'm still down 32 lbs since surgery.

I did tell him about some of the symptoms I was concerned about and he said I sounded hypothyroid. So he did check that result and thankfully it was in too. Sure enough my T4 was only .66 and the lowest range is .61. The problem is, when I was on 150mcg of Levothyroxine I became hyperthyroid. Now I'm on 125mcg and this is the first time my labs have shown a low result. It's been "normal" for the last 6+ months! So Dr. L suggested I get my PCP at home to order another thyroid blood test and then send him the results. Then we'll decide what to do. Is their a median dose between 125 and 150??

I sent a request to get my other results, so hopefully I'll get them in the next few weeks. Until then, I'm going to enjoy my holidays with everything I've got! :) For those that gave well wishes, thank you so much they worked! Thanks!!!

Off to Seattle

Well, I'll be leaving for Seattle tomorrow to know once and for all what's going on with me. To get a stim test finally and my yearly MRI. Hopefully it will bring good news. I can only pray anyway. I'm just gonna think positive until I know otherwise.

We will arrive in Seattle at 3pm PST and hopefully I should be at the Inn by dinnertime. I have all my testing on Monday, starting with bloodwork and the stim test at 9am. Then at 11am I have my MRI, followed by the visit with Dr. L at 1pm. Hopefully he has some of the results by then. He usually does, so we'll see. Then we (meaning my mom and I) will be heading home. She'll go back to Chicago (after visiting with us for the last 2 weeks) and I'll come home to NJ.

So wish me luck!!

Oh how sick I got...

And not from the swine flu. I think anyway. Monday night, I did NOT feel good. I had the runs, and the chills and was sure I was getting the flu. I totally stressed myself out and I was totally sick to my stomach. I was sure I was gonna get sick. Thankfully hubby took over and took care of the kiddos and I went to sit down. I hadn't eaten anything since lunch (which was a Salad Works salad) and I just didn't want to. I tried to down some Propel and saltines, but my body wasn't having it.

I ended up sleeping in the chair that night as I didn't want to get anyone else sick (or have my kids see me get sick). Thankfully I was fine. Whatever it was went away and it was made better by taking 20mg of hydro Tues morning. Then it hit me!! DUH!! WhenEVER I get the runs it takes my body down ten fold. I didn't think to stress dose, which is stupid cuz even if I was nauseous I should've taken something. Was afraid I'd puke it up. Once those meds hit my body, I felt progressivly better and better.

I only ate toast and some cheerios yesterday, but I'm feeling better now. I took another 20mg this morning, just to be sure. I figured I'd stay on 20mg for a couple days then go back to 15mg. I can't believe it's almost been 18 months postop and I'm STILL not good at figuring out my body's signs. :( I'm just glad it's not the flu. Yet. But my daughter is doing better thankfully and my son has yet to get it as well. *knock on wood* I'll keep ya posted.

Meeting the swine flu. . .

It seems my kids school has a case of the swine flu going around. The "odd" thing is, most of the docs around the area are just calling it a "bad virus." But it's a HIGH fever that comes out of nowhere followed by a really bad cough. And that's the "mild version." The moms, including myself, know better. The CDC has said those symptoms are those of the swine flu. So why is the medical community not really dealing with it??

My daughter has this illness; came home on Tuesday with a fever of 102. She was fine before that. For the last 3 days, she's had a fever and then the cough started. But those are the only symptoms. Thankfully she's eating and drinking just fine. I'm just waiting for it to hit my son next. And me. I'm the one that's most susceptible to the worst parts of this flu. I'm taking in as much vitamin C and stuff as I can. And of course the docs are all out of the regular flu shot, so I'm worried. But time will tell. For now I'm just exhausted dealing with my daughter and worrying about if my son will get it. And my back is taking a beating. But I can't see my chiro, til this is over. I just pray it's soon...

WTH is going on with me?!?!?

Ok, I was on day five of being on 10mg when I got a vicious headache. Now mind you I started taking my shots again and I put a new estrogen patch on. So let me get this straight.... estrogen can lower cortisol??? I'm not sure that's what I've read previously, but that seems to be my case. I took some Excedrin just to see if it was a regular headache. Eventually, my headache did go away. BUT it came back with just as much force after the Excedrin wore off. So yesterday (Monday), I went back up to 15mg of hydro and so far my headache is gone. I'm still not sure what to think and I have no idea wth is going on with my body. I guess I'll just stay put at 15mg for now and wait til I see Dr. L next month. But that nagging worry just won't leave me.....

Another update...Sorry it's been so long.

It's been crazy the last 6 weeks. The kids went back to school on the 8th, my 9 yr anniversary was on the 16th, I got an EVIL cold on the 18th and that alone took me out for 2 full weeks. I was exhausted and felt the worst that I've felt since surgery. I saw both my GP and ENT who both said it wasn't a sinus infection or flu, just a really bad cold. I just have to stress the REALLY.

Once the cold started going away, I must've coughed and pulled my back out. It's been over a week now and my back STILL hurts. I've been to the chiro 4 times so far and he said it's going to take quite a few sessions. I'm actually thinking of doing acupuncture to help as well. I just don't know WHAT is going on. And of course knowing me...I panic. The Cushings might be back. SOMETHING is going on and I have to figure it out myself. So I weaned from 15mg to 10mg. Last time I did this, I felt awful. Truly terrible. This time....I'm totally fine. Still have back problems, but no weaning affects. That scares me. I've noticed I've gone up on the scale about 5-10 lbs too. And my stretchmarks are more obvious. I even think I've noticed that my thumb/wrist pain comes and goes like it's cycling... I'm gonna have to start to really jot everything down. :(

Is this how it starts? When someone believes the Cushings is back? I don't know. My skin is still soft as ever, not oily...my anxiety isn't there...my face still looks thin...for now. I don't know. I do know I haven't been good about taking all my meds. I forgot my estrogen patch for a week, would that matter? I haven't been good about keeping a schedule for my GH shots. I take my thyroid and hydro in the morning and that's it. I've been feeling fine for the most part! Minus the cold and my back of course.

I'm making myself get back on track with all my meds. I've been debating about calling Dr. L and telling him about the meds change. I see him in a month and will then. Maybe for now I'll just stay on 10 and see how that goes. If I feel the need to wean again, I'll call Dr. L. I just don't know what's going on and I have to tell ya...I'm really scared. :(

Cortisol blood test results!!

My cortisol level for Saturday morning was 1.8 and I still can't believe it's that low!! But I'm happy and content again for the next 3 months!! And I have my official date for my yearly/18 month visit to Seattle. It's Monday, November 16th. So I'll go out on Sunday night; have my stim test done, my yearly MRI done and then an appt with Dr. L on Monday. Then I'll come home on Tuesday. Short and sweet, just like I like it. Enough to say hi to all the wonderful people that took care of me while I was there.

So all is well at this point. My cortisol may spike next week when I stress out about the kids starting school again. Still can't believe this summer is gone! It's truly gone too fast!

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. . .