Before I made that last post, I should have posted this, on our anniversary. I've just been too sick to care about anything.
My husband and I celebrated our 19th wedding anniversary on the 24th. Not so much celebrating though. I was sick! We did go away for the weekend. We went to Amish country for a couple of days. On Saturday, we walked around in 3 shops. Maybe 20 min. max for each place. It wore me out so bad! By that evening, when I would get up to walk, I could hardly move. I suppose that was the lead in, to the previous post.
Anyway, I really was not wanting to go anywhere this year. We usually try to get away for a day or two, for our anniversary. We have had so much medical expense, and since I'm facing more surgery, I didn't want to spend the money. He still wanted to go away, so we did. I just wish I had felt better to enjoy it more.
My husband is a great guy! I'm so blessed to have him for my husband! SO MANY of my friends who have/had Cushing's, go through a divorce. Of course, other people do too, but the sickness really wears you down and really works on a marriage.
I use to be like superwoman. I always had my house clean. It was always ready for visitors if anyone stopped in. He use to tease me and call me a neat freak. He doesn't get "neat freak" any more. Now it's more like "super slob". The kids help out, but they also make messes. I don't have the energy to stay on them to keep it up all of the time. When you have little kids, it's hard to keep the house neat. It has to be worked on ALL the time to keep it neat with little ones around. The older kids get upset because they clean it all up, and the little ones end up tearing it all out again.
After my pituitary surgery, when I got to feeling so good, I got this house really clean, and really organized again. He said he could tell I was doing so much better because the house was clean again, like I always use to have it. When the symptoms came back, and everything started going downhill, so did the house. He never complains about it, and I'm grateful! If it really bothers him, he will pitch in and help do stuff.
I think a lot of the spouses of Cushing's patients get so tired of the medical issues. I hear that a lot, that the spouses say they are tired of the drama. I try not to complain too much. I don't want to be a drag. However, I can't pretend I'm not sick. I physically and mentally don't have the strength to pretend I'm not sick. I did that for years. I'm beyond that now. It is what it is. I'm so thankful that my husband accepts that. I know when we got married, he never counted on going through all of this. Nobody ever does. A lot of people bail. He's stuck with me through it all. I'm hoping I'll be cured by my 20th anniversary, and then we can REALLY celebrate!
My husband is the love of my life. We dated for almost 2 years before we got married. We married at 19. Most people would never dream of getting married at 19 and expect it to last! We've had ups and downs, as anyone does, but we never fight, and we still love each other. That's saying a lot these days! Before I was married, I prayed and prayed for God to show me who he had intended for me. Some people don't believe in that, but we do. We felt that we were meant for each other. It's still working, 19 yrs. later. God helps us each day, to love each other, to make it through the bad times, and to trust in him. I'm so thankful that He gave me Andy!
Thursday, March 26, 2009
Two weeks after starting Keto
The first week was great! I felt so much better, and I lost 1 lb. per day. Close to starting the second week, I quit losing weight, started getting hot flashes, red face, high blood pressure, huge zits, etc. During that first week, people had noticed that my face was not so red and my overall complexion looked better. I felt so good, I had to remind myself that I wasn't cured, I was just taking Keto!
I quit taking the morning dose of hydro, since I had so many high signs. I kept taking the Keto, but I continue to have the hot flashes, red face, etc. The last several days, I've had a killer headache. Just rolling over in bed made my head feel like it would blow off. It hurts at the base of my skull, and across my forehead. Light and movement bothers it. I don't know if it's the change in weather (that sometimes does it for me) or if it's Cushing's related, or something else.
My back muscles have been aching really bad, like when you have the flu. That is the only indication I could say might mean my cortisol is too low. I weighed today, and I lost more weight again. Yay! I'm down 7 lbs. since starting the Keto.
I didn't take the Keto last night, and I took the hydro this morning, to see if it would help with the pain (maybe I'm too low?) Nope! All it did was give me immediate indigestion! I've had that bad in the past week. It's also giving me more hot flashes. Nice!
I don't know if I need more Keto or what. I'm almost afraid to go higher because of my cycling. I would ask my doctor first, before going higher. I know that around the beginning of every month, I go low, and hurt all over. I don't know if maybe the Keto threw me off schedule, or by the first of April, I'll go REALLY low. I don't want to end up with AI.
All I do know, is that I AM getting a response to Keto, and that's a good thing. I also know I need to see my chiropractor. I'm out in lots of places. He is on vacation this week. Nice! I have to wait until Monday to see him.
The Keto is making the facial hair fall out. I still have some, but it is not nearly as thick as it was. The bad part is, I'm also losing more from my head. That's NOT a good thing! Sometimes I wonder if I'll have any hair left by the time I get all done with this stuff!
I quit taking the morning dose of hydro, since I had so many high signs. I kept taking the Keto, but I continue to have the hot flashes, red face, etc. The last several days, I've had a killer headache. Just rolling over in bed made my head feel like it would blow off. It hurts at the base of my skull, and across my forehead. Light and movement bothers it. I don't know if it's the change in weather (that sometimes does it for me) or if it's Cushing's related, or something else.
My back muscles have been aching really bad, like when you have the flu. That is the only indication I could say might mean my cortisol is too low. I weighed today, and I lost more weight again. Yay! I'm down 7 lbs. since starting the Keto.
I didn't take the Keto last night, and I took the hydro this morning, to see if it would help with the pain (maybe I'm too low?) Nope! All it did was give me immediate indigestion! I've had that bad in the past week. It's also giving me more hot flashes. Nice!
I don't know if I need more Keto or what. I'm almost afraid to go higher because of my cycling. I would ask my doctor first, before going higher. I know that around the beginning of every month, I go low, and hurt all over. I don't know if maybe the Keto threw me off schedule, or by the first of April, I'll go REALLY low. I don't want to end up with AI.
All I do know, is that I AM getting a response to Keto, and that's a good thing. I also know I need to see my chiropractor. I'm out in lots of places. He is on vacation this week. Nice! I have to wait until Monday to see him.
The Keto is making the facial hair fall out. I still have some, but it is not nearly as thick as it was. The bad part is, I'm also losing more from my head. That's NOT a good thing! Sometimes I wonder if I'll have any hair left by the time I get all done with this stuff!
Friday, March 13, 2009
Started Ketoconozole last night
After talking to Dr. F. last, I decided to try to get just a bit more testing in, in hopes of catching a few more highs before starting the Keto. I don't have all of the results back yet. It will be a while on that.
I was nervous about starting the Keto. I cycle so rapidly with Cushing's, that I've worried about how the Keto might work for me. As it is, when I dip low, it's really low for me, then add in the Keto,.... it makes me worry about AI. Aside from all of that, I've been anxious to get it started. This last week has been a doozy for me. I went from sleeping most of a 24 hr. period for several days, to being awake for most of a 24 hr. period. Whatever it was (I've never figured out my highs and lows), I tested through all of it! I did midnight serums and 24 hr. UFC's. I'm hoping to at least get some high 17-Hydroxycorticosteroids out of it! I do know that one of my midnight serums was 5 something. Not high enough, but it's still in the elevated range. I finished collecting my last UFC yesterday morning, which was Thursday.
So, last night, I started my Keto. Being the chicken that I am (about this), I decided to ease myself into it. I am suppose to take 200 mg. at bedtime. (On my bottle, it says to take at 9 PM. I'm glad they defined "bed time" for me! LOL! Since mine is so sporatic, I don't know what "bed time" is.) I decided to start out with 100 mg., and see how I do on that, before going to the 200 mg. So far, I like it! Within 15 min. of taking it, I was getting tired! I also started getting colder. I wasn't chilling, just cooling down. With Cushing's, I tend to run on the hot side. I went to bed around 1:30 AM. That's pretty good for me! I did wake up early this morning, though. I decided to get up, since I was awake and feeling pretty good, and take my medicine. I took 15 mg. of hydrocortisone, my thyroid medicine (I'll talk about that later) and my GH shot.
The only side effect I had from the Keto, so far, was diarrhea. Not bad, not the stomach killing you type of stuff, or being married to the toilet for the night. I can deal with this! I took my bp last night too, and it was down from what it had been running. I hope the Keto and I keep getting along like this! I feel more calm, and like I have more energy. I think the reason I started getting tired was because of it calming everything down. I have felt like my body and brain have a lot of commotion going on lately. I told my husband I wish someone would just unplug me! It's hard to explain. When I would try to go to sleep, in the last several days, I would lay there, tired, but wide awake. I told one of my friends that I might be able to sleep if the voices in my head would shut up long enough! LOL! I don't really hear voices, but what I mean is, it's like my brain is on fast forward. I have everything running through my head, and all at once. I have to wonder if that is what it feels like to have ADHD, or ADD. I never use to be like this. I mean, before Cushing's. After surgery, it went away. I felt nice and calm again. This was another sign for me that Cushing's was back.
I believe in my last post, or maybe before that, I mentioned that my local endo was afraid to give me a higher dose of thyroid meds. She was worried that my adrenals might not be able to handle it, and that it would throw me into an adrenal crisis. She had reasons for feeling that way, and she's not totally off the mark. My AM cortisol numbers are low, so with just looking at those, it looks like I am adrenally insufficient. The problem is, that I still have Cushing's. This means I have higher cortisol at night, or at different times throughout the day, but she is not seeing that from a morning level. My levels are flipped from a normal person's, because of the Cushing's. So, I talked to my CA Cushing's specialist about this. He told me to start on 100 mcg. of Levoxyl. He is not concerned with the possibility of AI. Besides, if it were to happen, I have the hydrocortisone pills, plus my emergency injectible if I need it. I started on the Levoxyl and I've had no problems from that either. Now that I'm adding in Keto, it does concern me. I worry that if the Keto drops my levels too far, that the higher dose of thyroid medicine will make me go AI. That's another reason I'm easing myself into this. So far, everything is getting along! It's too soon to tell for sure, since I've only taken the Keto once, but so far, so good!
I was nervous about starting the Keto. I cycle so rapidly with Cushing's, that I've worried about how the Keto might work for me. As it is, when I dip low, it's really low for me, then add in the Keto,.... it makes me worry about AI. Aside from all of that, I've been anxious to get it started. This last week has been a doozy for me. I went from sleeping most of a 24 hr. period for several days, to being awake for most of a 24 hr. period. Whatever it was (I've never figured out my highs and lows), I tested through all of it! I did midnight serums and 24 hr. UFC's. I'm hoping to at least get some high 17-Hydroxycorticosteroids out of it! I do know that one of my midnight serums was 5 something. Not high enough, but it's still in the elevated range. I finished collecting my last UFC yesterday morning, which was Thursday.
So, last night, I started my Keto. Being the chicken that I am (about this), I decided to ease myself into it. I am suppose to take 200 mg. at bedtime. (On my bottle, it says to take at 9 PM. I'm glad they defined "bed time" for me! LOL! Since mine is so sporatic, I don't know what "bed time" is.) I decided to start out with 100 mg., and see how I do on that, before going to the 200 mg. So far, I like it! Within 15 min. of taking it, I was getting tired! I also started getting colder. I wasn't chilling, just cooling down. With Cushing's, I tend to run on the hot side. I went to bed around 1:30 AM. That's pretty good for me! I did wake up early this morning, though. I decided to get up, since I was awake and feeling pretty good, and take my medicine. I took 15 mg. of hydrocortisone, my thyroid medicine (I'll talk about that later) and my GH shot.
The only side effect I had from the Keto, so far, was diarrhea. Not bad, not the stomach killing you type of stuff, or being married to the toilet for the night. I can deal with this! I took my bp last night too, and it was down from what it had been running. I hope the Keto and I keep getting along like this! I feel more calm, and like I have more energy. I think the reason I started getting tired was because of it calming everything down. I have felt like my body and brain have a lot of commotion going on lately. I told my husband I wish someone would just unplug me! It's hard to explain. When I would try to go to sleep, in the last several days, I would lay there, tired, but wide awake. I told one of my friends that I might be able to sleep if the voices in my head would shut up long enough! LOL! I don't really hear voices, but what I mean is, it's like my brain is on fast forward. I have everything running through my head, and all at once. I have to wonder if that is what it feels like to have ADHD, or ADD. I never use to be like this. I mean, before Cushing's. After surgery, it went away. I felt nice and calm again. This was another sign for me that Cushing's was back.
I believe in my last post, or maybe before that, I mentioned that my local endo was afraid to give me a higher dose of thyroid meds. She was worried that my adrenals might not be able to handle it, and that it would throw me into an adrenal crisis. She had reasons for feeling that way, and she's not totally off the mark. My AM cortisol numbers are low, so with just looking at those, it looks like I am adrenally insufficient. The problem is, that I still have Cushing's. This means I have higher cortisol at night, or at different times throughout the day, but she is not seeing that from a morning level. My levels are flipped from a normal person's, because of the Cushing's. So, I talked to my CA Cushing's specialist about this. He told me to start on 100 mcg. of Levoxyl. He is not concerned with the possibility of AI. Besides, if it were to happen, I have the hydrocortisone pills, plus my emergency injectible if I need it. I started on the Levoxyl and I've had no problems from that either. Now that I'm adding in Keto, it does concern me. I worry that if the Keto drops my levels too far, that the higher dose of thyroid medicine will make me go AI. That's another reason I'm easing myself into this. So far, everything is getting along! It's too soon to tell for sure, since I've only taken the Keto once, but so far, so good!
Wednesday, March 4, 2009
Finally, an update
It's been a long time since I have posted anything. I have been feeling terrible, and that is putting it mildly!
As of late, I've been almost unable to walk! My joints have hurt so bad, I just couldn't even describe it. The problem? My thyroid.
I had been back to my local endo, and we know that my thyroid is low, making me hypothyroid. She has me on 25 micrograms of generic Synthroid. Acutally, she never said it had to be generic. If I remember right, the pharmacy asked me if it could be generic, and I said yes. Anyway, she said she couldn't raise my dose because she didn't think my adrenals could support it. My morning cortisol, last time it was tested, was at 1.8. That is very low. She admits that all of my numbers confuse her. LOL! Poor woman! I'm giving her a work out! Anyway, my Free T4 is at .7, which is the bottom of the "normal" scale for that level, and that is with me being on some thyroid medicine. It's a low dose, but it IS something!
Anyway, I tried taking my hydrocortisone (hydro for short), to see if it helped. There was an off chance that my joint pain was from being too low in cortisol. I took hydro and all it did was give me indigestion! It didn't help with the joint pain in the very least! That confirmed to me that it was from my thryoid, not my adrenals not working right.
I have higher tests at night, sometimes, and I still have symptoms of Cushing's. I'm gaining weight, etc. I spoke with my Cushing's specialist in California tonight. He is putting me on 100... not sure if it's micrograms or milligrams of Levoxyl for my thyroid, and he said to make sure it's name brand. No generics.
As for the Cushing's, well, it's plain to see I have physical symptoms of Cushing's, and I have labs that are high, but not diagnostic yet. I'm so cyclical, it's hard to get the high numbers I need. I've had a follow up MRI and it showed nothing. So, he said I have 3 options.
Option #1. I could go back for more pituitary surgery. They could take out a bit more where they removed tumor before, and hope that they get the extra cells that are causing problems. This is not an option as far as I'm concerned. I know the risk of a CSF leak (cerebral spinal fluid) are much greater on a second surgery. I also know the percentage of a cure are very slim. Well, slim to me anyway. I know that it almost guarantees that I'll have more pituitary function lost. I'm not willing to go down that road. In my heart of hearts, I believe my problem lies in my adrenals, not my pituitary.
Option #2. I could have a BLA (Bilateral Adrenalectomy, where they remove both adrenals), which is what I want, but I need to get more high results than what I have so far. I am so cyclical, I don't know how many more months it might take to catch my highs.
Option #3. I can take Ketoconazole. It is an antifungal drug. It is also used in Cushing's patients sometimes, to lower cortisol. It is not meant to be taken long term, in most cases. This should give me relief of symptoms. I'll also have to take 15 mg. of hydro in the morning. I'll take 200 mg of the Keto at night, before bed. We might need to play around with the dose later on. Lots of people find relief with this route. It sort of induces a chemical BLA, without actually taking out the adrenals. If the results are favorable, then a BLA should work just fine. If it doesn't yield any relief, or improvements, then having a BLA probably won't either. Keto, taken at high doses, for long periods of time, can cause liver damage, BUT, I'm told that when it is stopped, the liver "damage" leaves and it returns to normal. Since I'm not going to be on real high doses, I shouldn't have that problem.
I chose option #3. I'm not real keen on taking Keto, because of the liver issues, but he made me feel better with what he told me, and I want RELIEF! Honestly, I feel so bad, I can't put it into words. At least not any that are nice and that I'm allowed to say. Since the beginning of the year, I have went straight downhill, and it just keeps getting worse! I figured that this is the best route for me to go. I will get more immediate relief, and it will show us how a BLA would do for me. I'm not certain, but I think that if this proves to work good (I feel better and start losing weight on it) I can then go on to the BLA. I'm not sure if I will still need to do further testing or not. Right now, I'm not worried about it. I just want to feel better! I can't wait to feel some resemblence of normal again!
As of late, I've been almost unable to walk! My joints have hurt so bad, I just couldn't even describe it. The problem? My thyroid.
I had been back to my local endo, and we know that my thyroid is low, making me hypothyroid. She has me on 25 micrograms of generic Synthroid. Acutally, she never said it had to be generic. If I remember right, the pharmacy asked me if it could be generic, and I said yes. Anyway, she said she couldn't raise my dose because she didn't think my adrenals could support it. My morning cortisol, last time it was tested, was at 1.8. That is very low. She admits that all of my numbers confuse her. LOL! Poor woman! I'm giving her a work out! Anyway, my Free T4 is at .7, which is the bottom of the "normal" scale for that level, and that is with me being on some thyroid medicine. It's a low dose, but it IS something!
Anyway, I tried taking my hydrocortisone (hydro for short), to see if it helped. There was an off chance that my joint pain was from being too low in cortisol. I took hydro and all it did was give me indigestion! It didn't help with the joint pain in the very least! That confirmed to me that it was from my thryoid, not my adrenals not working right.
I have higher tests at night, sometimes, and I still have symptoms of Cushing's. I'm gaining weight, etc. I spoke with my Cushing's specialist in California tonight. He is putting me on 100... not sure if it's micrograms or milligrams of Levoxyl for my thyroid, and he said to make sure it's name brand. No generics.
As for the Cushing's, well, it's plain to see I have physical symptoms of Cushing's, and I have labs that are high, but not diagnostic yet. I'm so cyclical, it's hard to get the high numbers I need. I've had a follow up MRI and it showed nothing. So, he said I have 3 options.
Option #1. I could go back for more pituitary surgery. They could take out a bit more where they removed tumor before, and hope that they get the extra cells that are causing problems. This is not an option as far as I'm concerned. I know the risk of a CSF leak (cerebral spinal fluid) are much greater on a second surgery. I also know the percentage of a cure are very slim. Well, slim to me anyway. I know that it almost guarantees that I'll have more pituitary function lost. I'm not willing to go down that road. In my heart of hearts, I believe my problem lies in my adrenals, not my pituitary.
Option #2. I could have a BLA (Bilateral Adrenalectomy, where they remove both adrenals), which is what I want, but I need to get more high results than what I have so far. I am so cyclical, I don't know how many more months it might take to catch my highs.
Option #3. I can take Ketoconazole. It is an antifungal drug. It is also used in Cushing's patients sometimes, to lower cortisol. It is not meant to be taken long term, in most cases. This should give me relief of symptoms. I'll also have to take 15 mg. of hydro in the morning. I'll take 200 mg of the Keto at night, before bed. We might need to play around with the dose later on. Lots of people find relief with this route. It sort of induces a chemical BLA, without actually taking out the adrenals. If the results are favorable, then a BLA should work just fine. If it doesn't yield any relief, or improvements, then having a BLA probably won't either. Keto, taken at high doses, for long periods of time, can cause liver damage, BUT, I'm told that when it is stopped, the liver "damage" leaves and it returns to normal. Since I'm not going to be on real high doses, I shouldn't have that problem.
I chose option #3. I'm not real keen on taking Keto, because of the liver issues, but he made me feel better with what he told me, and I want RELIEF! Honestly, I feel so bad, I can't put it into words. At least not any that are nice and that I'm allowed to say. Since the beginning of the year, I have went straight downhill, and it just keeps getting worse! I figured that this is the best route for me to go. I will get more immediate relief, and it will show us how a BLA would do for me. I'm not certain, but I think that if this proves to work good (I feel better and start losing weight on it) I can then go on to the BLA. I'm not sure if I will still need to do further testing or not. Right now, I'm not worried about it. I just want to feel better! I can't wait to feel some resemblence of normal again!
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