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...
Thursday, April 30, 2009
Wednesday, April 29, 2009
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. :)
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. :)
Monday, April 27, 2009
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. :)
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. :)
Monday, April 20, 2009
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. :)
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. :)
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. :)
Wednesday, April 8, 2009
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
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
Tuesday, April 7, 2009
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. . .
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. . .
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