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...
Friday, March 27, 2009
Monday, March 23, 2009
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. :)
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. :)
Saturday, March 7, 2009
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.
Wednesday, March 4, 2009
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.
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.
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