Aa
AM cortisol 0.5? You're fine!
Hi. I'm confused and lightheaded and will try to make this concise, thank you!
On 5/14 my A.M. and P.M. serum cortisol both came up at 0.5mcg/dl. My GP started me on hydrocortisone while I waited to see an endocrinologist. GP said straight up that he has no idea how to treat adrenal stuff or dose hydrocortisone.
mid March: unusually thirsty and lightheaded
3/18: shortness of breath getting bad
4/1: headaches, trouble concentrating, forming proper sentences, feels like exercise every time I move
4/19: bad abdominal pain, upper left
4/26: lost about 10lbs by now (from 112lbs to 102)
5/2: gastric emptying study done, is fine
5/7: put on Megace for having lost 20lbs when I'd prefer to gain
5/13: urgent care for abdominal pain and fever
5/14: cortisol bloodwork done (0.5 at 8am and 4pm)
5/16: abdominal ultrasound done, comes back fine
5/17: start hydrocortisone, work up to 10mg BID
5/29: first endocrinologist appointment, no med changes or advice, orders tests
5/31: endo takes me off of hydrocortisone for labs, after 5 hours I'm in urgent care with BP in the 80s
6/1: AM cortisol and ACTH done, waited for letter
6/3: I call endo to see what I can do, because I've been in bed for weeks, and halfway there for months
6/4: get letter from endo saying:
"Your recent test results have abnormalities I expected. No action is needed. Please schedule regular appointments so I can monitor your medical conditions. Please continue with your same medication and dosage.
Cortisol, A.M. 2.7 mcg/dl, ACTH, Plasma, 11pg/ml."
I called and made an appointment a few weeks out, because I still don't have a diagnosis or know what to do with hydrocortisone, and am still feeling confusion, dizziness, weakness, panic, headaches, and abdominal pain about 2 hours after every dose of hydrocortisone. It helps a TON for about two hours.
I got a call back from the endocrinologist himself, telling me he doesn't know why I want an appointment so bad and saying not to bother coming back in at all. My GP had said the ACTH stim test was the big one we were waiting for. I asked endo if we'd done it, he said it's not necessary, and I'd need to come off hydrocortisone for at least a month to do it anyway.
Can somebody at least give me advice on being less dizzy, confused, and cranky in between doses? I know nothing about what is wrong with me or what this medication does, and reading is getting really hard.
Thanks very much!
On 5/14 my A.M. and P.M. serum cortisol both came up at 0.5mcg/dl. My GP started me on hydrocortisone while I waited to see an endocrinologist. GP said straight up that he has no idea how to treat adrenal stuff or dose hydrocortisone.
mid March: unusually thirsty and lightheaded
3/18: shortness of breath getting bad
4/1: headaches, trouble concentrating, forming proper sentences, feels like exercise every time I move
4/19: bad abdominal pain, upper left
4/26: lost about 10lbs by now (from 112lbs to 102)
5/2: gastric emptying study done, is fine
5/7: put on Megace for having lost 20lbs when I'd prefer to gain
5/13: urgent care for abdominal pain and fever
5/14: cortisol bloodwork done (0.5 at 8am and 4pm)
5/16: abdominal ultrasound done, comes back fine
5/17: start hydrocortisone, work up to 10mg BID
5/29: first endocrinologist appointment, no med changes or advice, orders tests
5/31: endo takes me off of hydrocortisone for labs, after 5 hours I'm in urgent care with BP in the 80s
6/1: AM cortisol and ACTH done, waited for letter
6/3: I call endo to see what I can do, because I've been in bed for weeks, and halfway there for months
6/4: get letter from endo saying:
"Your recent test results have abnormalities I expected. No action is needed. Please schedule regular appointments so I can monitor your medical conditions. Please continue with your same medication and dosage.
Cortisol, A.M. 2.7 mcg/dl, ACTH, Plasma, 11pg/ml."
I called and made an appointment a few weeks out, because I still don't have a diagnosis or know what to do with hydrocortisone, and am still feeling confusion, dizziness, weakness, panic, headaches, and abdominal pain about 2 hours after every dose of hydrocortisone. It helps a TON for about two hours.
I got a call back from the endocrinologist himself, telling me he doesn't know why I want an appointment so bad and saying not to bother coming back in at all. My GP had said the ACTH stim test was the big one we were waiting for. I asked endo if we'd done it, he said it's not necessary, and I'd need to come off hydrocortisone for at least a month to do it anyway.
Can somebody at least give me advice on being less dizzy, confused, and cranky in between doses? I know nothing about what is wrong with me or what this medication does, and reading is getting really hard.
Thanks very much!
I have seen various counselors since I was 17. My husband and I have been to counseling more than once---our options were not very good and it did not do us a lot of good.
My husband refuses to go to counseling again. However, he IS willing to visit with a church leader that he respects----as long as we do not meet together at the same time with him.( I had a tendency to get so angry by the time we finally saw someone that i would really let him have it--plus, he felt like he was being "tattled on"---guess he didn't want people to know what he was doing and saying to me).
Now that things are out in the open---and he has admitted to treating me very poorly, there is nothing to hide---and nothing to "tattle" on---so things can be talked about a little easier, i think.
Because the leader he is willing to talk to is not the usual person our church would have us meet with, i may have to pull a few strings to get this ok'd. If this leader would be willing to follow through with visiting with my husband on a fairly regular basis---say every 2-3 weeks, even if only for about 15 minutes, I really feeel like it would do alot of good. It would even be more helpful if he was willing to meet with me occasionally to make sure he is getting the issues from both points of view.
This is a person we both know and trust--both as a church leader and as a friend. He is not a professional counselor, but I am sure he has quite a bit of experience dealing with couples that are trying to work through various issues.
I believe in my husband, and I have seen him at his best--i know what he is capable of. I think he could be capable, again, of being the good, kind man that I met and fell in love with. i just think that he got off track somewhere---and when i tried to get help----I could not get anyone to listen and follow through---so things just escalated until my children stepped in and "reported" to a church leader the level of difficulty that i was having to deal with and how my husband was behaving. Fortunately, it stopped things from getting any worse. But, unfortunately, the church leader that my children talked to has not followed through very well--and he only talked to me twice, early on----and has never visited with me again.
My husband just needs someone to follow through with him and visit with him on a fairly regular basis to help him stay on track. My son had a good way of putting it--he said it is kind of like he needs a sponsor---like people who are in AA have--someone to check in with on a regular basis or when they are having trouble.
I honestly think that my husband would be able to keep himself on the "high road" if he had to be accountable to someone for his actions and words, and how he is treating his wife and family. Also, this is something he is WILLING to do---and the leader that we both trust actually VOLUNTEERED to visit with my husband on a regular basis when I went and visited him (at work) because I didn't know what to do to get help.
It may not be quite as good as a professional counselor---but it's alot better than nothing---which is what i would get if I tried to get him to go to a counselor---but, then again, it might even be better than a counselor, because we have known and loved and trusted this man for probably 14 years----as both a leader and a friend.
I could probably use some personal counseling from a professional again, someday---i really have a hard time adjusting to changes---and we have had so many changes in our lives over the last 6 years. I may try it again eventually--but not right now.
As for the carpal tunnel------
Both of my hands were cramping up so bad on me that I could not even hold a newspaper or a book for very long. I would get some numbness in my fingers, also---i still get some of that---but it is coming from my neck. During one of my pregnancies it got really bad. I was retaining more water than usual, and I woke up one morning and my wrists and hands hurt horribly--they recommended splints. It took about a month after I had my baby for the problems to go away.
It helped with most of the cramping--but i still occasionally get pain in my wrists and some cramping in my hands---seems to be kind of weather related. Both hands had scar tissue inside of them---i did not know that carpal tunnel could cause enough scar tissue inside of your hand. I have had symptoms of wrist problems for alot of years----probably going back to almost 23 years ago.
What do you feel caused you to need surgery on your wrist---I assume it was carpal tunnel surgery?
My husband has had carpal tunnel surgery on one wrist---but he is in tires, and it is a pretty common thing for a tire man to end up having carpal tunnel surgery.
My husband refuses to go to counseling again. However, he IS willing to visit with a church leader that he respects----as long as we do not meet together at the same time with him.( I had a tendency to get so angry by the time we finally saw someone that i would really let him have it--plus, he felt like he was being "tattled on"---guess he didn't want people to know what he was doing and saying to me).
Now that things are out in the open---and he has admitted to treating me very poorly, there is nothing to hide---and nothing to "tattle" on---so things can be talked about a little easier, i think.
Because the leader he is willing to talk to is not the usual person our church would have us meet with, i may have to pull a few strings to get this ok'd. If this leader would be willing to follow through with visiting with my husband on a fairly regular basis---say every 2-3 weeks, even if only for about 15 minutes, I really feeel like it would do alot of good. It would even be more helpful if he was willing to meet with me occasionally to make sure he is getting the issues from both points of view.
This is a person we both know and trust--both as a church leader and as a friend. He is not a professional counselor, but I am sure he has quite a bit of experience dealing with couples that are trying to work through various issues.
I believe in my husband, and I have seen him at his best--i know what he is capable of. I think he could be capable, again, of being the good, kind man that I met and fell in love with. i just think that he got off track somewhere---and when i tried to get help----I could not get anyone to listen and follow through---so things just escalated until my children stepped in and "reported" to a church leader the level of difficulty that i was having to deal with and how my husband was behaving. Fortunately, it stopped things from getting any worse. But, unfortunately, the church leader that my children talked to has not followed through very well--and he only talked to me twice, early on----and has never visited with me again.
My husband just needs someone to follow through with him and visit with him on a fairly regular basis to help him stay on track. My son had a good way of putting it--he said it is kind of like he needs a sponsor---like people who are in AA have--someone to check in with on a regular basis or when they are having trouble.
I honestly think that my husband would be able to keep himself on the "high road" if he had to be accountable to someone for his actions and words, and how he is treating his wife and family. Also, this is something he is WILLING to do---and the leader that we both trust actually VOLUNTEERED to visit with my husband on a regular basis when I went and visited him (at work) because I didn't know what to do to get help.
It may not be quite as good as a professional counselor---but it's alot better than nothing---which is what i would get if I tried to get him to go to a counselor---but, then again, it might even be better than a counselor, because we have known and loved and trusted this man for probably 14 years----as both a leader and a friend.
I could probably use some personal counseling from a professional again, someday---i really have a hard time adjusting to changes---and we have had so many changes in our lives over the last 6 years. I may try it again eventually--but not right now.
As for the carpal tunnel------
Both of my hands were cramping up so bad on me that I could not even hold a newspaper or a book for very long. I would get some numbness in my fingers, also---i still get some of that---but it is coming from my neck. During one of my pregnancies it got really bad. I was retaining more water than usual, and I woke up one morning and my wrists and hands hurt horribly--they recommended splints. It took about a month after I had my baby for the problems to go away.
It helped with most of the cramping--but i still occasionally get pain in my wrists and some cramping in my hands---seems to be kind of weather related. Both hands had scar tissue inside of them---i did not know that carpal tunnel could cause enough scar tissue inside of your hand. I have had symptoms of wrist problems for alot of years----probably going back to almost 23 years ago.
What do you feel caused you to need surgery on your wrist---I assume it was carpal tunnel surgery?
My husband has had carpal tunnel surgery on one wrist---but he is in tires, and it is a pretty common thing for a tire man to end up having carpal tunnel surgery.
Two things.
1. You mention the many issues you and your husband are going through. Do either or both of you see a psychologist? These people can be a wonderful aid to dealing with the problems you have
2. You mention you had both wrists operated upon? Why? I am very curious as I had one wrist operated upon half a year ago
1. You mention the many issues you and your husband are going through. Do either or both of you see a psychologist? These people can be a wonderful aid to dealing with the problems you have
2. You mention you had both wrists operated upon? Why? I am very curious as I had one wrist operated upon half a year ago
Thank you for your detailed answer to my questions!!! I guess why my husband has issues initiating sex will always be a mystery to me---because I really don't think he has performance anxiety. Actually, he is extremely considerate when it comes to our physical relationship---and always has been---at least when we finally get around to actually having intimate relations---it's the getting to them, that has been the issue.
We had actually reached a point in our relationship, probably about 11 years ago where everything seemed to be flowing and working pretty well between us. Our physical drives were closely matched, we didn't seem to argue as much, If he said something to hurt my feelings, I was able to let it roll off my back alot easier and let go of it a lot quicker.
I was in the early days of whatever my health issues are, so I took alot less pain medication---most of my children were home, and my parents and family still lived nearby. Then, all hell seemed to break loose, starting with a totally unexpected pregnancy when I was 40 and a baby with health issues, children with health and mental issues, etc,. etc. In the middle of all this we moved----and i think that was the final breaking point for me physically and mentally-----I lost a ton of weight---people actually thought I had an eating disorder, I got so thin.
We have continued to have one problem aftr another since then----it is almost embarrassing----so many things have happened to our family it would sound like I was making them up if I told them all to you.
Originally I was able to deal alot better with most of the issues--but i finally reached a breaking point---and have never been able to pull myself out of it----but I do have some days when I am better than others.
Reminding me that it is normal for drive to drop with age was helpful, too, I also figured out a couple of other things that might be adding to the problem and took steps to work on them--hopefully things will start looking up in that area---but i am probably always going to have to be the initiator---at least the majority of the time. I guesss If i just learn to accept it--it really isn't that big of a deal----definitely not something to damage a marriage over.
I have tried to tell my husband that I need him to learn to be more tolerant with me while i work these health issues out----he says he thinks things will get better when I am better---but I remind him there are no guarantees that I will get better than i am right now. he says if I don't, then he will learn to deal with it---He needs to learn to deal with it now.
I think he is dealing with some issues of his own. We have just switched him to natural thyroid--he has not had the drive and energy to do things like he used to and he is much more irritable than he used to be. He will always be a little rough around the edges--but i can live with that.
I think I need to take the personal responsability to make myself take the time to think before I speak and act---because i know i have a problem in that area----i need to not use it as a catch-all excuse--but I do need to allow myself some leeway.
I don't know if my B6 has ever been tested, but my B12 is always high. i did have a nerve conduction test done and it was borderline---the doc figured I would eventually have to have the surgery. i put it off for about a year after the study, but my hands were cramping up on me too much and I couldn't even hold a book without pain. i had surgery on both wrists about 4 years ago. I definitely needed it done. I've played the piano for about 38 years and i crochet alot.
I have also told him that i would probably do alot better if I got alot more positive from him than negative. He agreed that that would probably help. i do think I am seeing some efforts on his part---after reading all of your response, I think I need to put in a bit more effort on MY part.
Thanks for taking the time to address each of my concerns. i don't know if I will get off of the cortisol---so I really hope that I can get the dosage right and the timing right---i think that should help. I think my dosage is not high enough---i noticed more problems when I raised my thyroid meds------the doc told me to watch for problems when the dosage was raised.
Unbekannt, your response seems to verify what i am thinking about my cortisol dosage not being high enough.
Thanks all!!
We had actually reached a point in our relationship, probably about 11 years ago where everything seemed to be flowing and working pretty well between us. Our physical drives were closely matched, we didn't seem to argue as much, If he said something to hurt my feelings, I was able to let it roll off my back alot easier and let go of it a lot quicker.
I was in the early days of whatever my health issues are, so I took alot less pain medication---most of my children were home, and my parents and family still lived nearby. Then, all hell seemed to break loose, starting with a totally unexpected pregnancy when I was 40 and a baby with health issues, children with health and mental issues, etc,. etc. In the middle of all this we moved----and i think that was the final breaking point for me physically and mentally-----I lost a ton of weight---people actually thought I had an eating disorder, I got so thin.
We have continued to have one problem aftr another since then----it is almost embarrassing----so many things have happened to our family it would sound like I was making them up if I told them all to you.
Originally I was able to deal alot better with most of the issues--but i finally reached a breaking point---and have never been able to pull myself out of it----but I do have some days when I am better than others.
Reminding me that it is normal for drive to drop with age was helpful, too, I also figured out a couple of other things that might be adding to the problem and took steps to work on them--hopefully things will start looking up in that area---but i am probably always going to have to be the initiator---at least the majority of the time. I guesss If i just learn to accept it--it really isn't that big of a deal----definitely not something to damage a marriage over.
I have tried to tell my husband that I need him to learn to be more tolerant with me while i work these health issues out----he says he thinks things will get better when I am better---but I remind him there are no guarantees that I will get better than i am right now. he says if I don't, then he will learn to deal with it---He needs to learn to deal with it now.
I think he is dealing with some issues of his own. We have just switched him to natural thyroid--he has not had the drive and energy to do things like he used to and he is much more irritable than he used to be. He will always be a little rough around the edges--but i can live with that.
I think I need to take the personal responsability to make myself take the time to think before I speak and act---because i know i have a problem in that area----i need to not use it as a catch-all excuse--but I do need to allow myself some leeway.
I don't know if my B6 has ever been tested, but my B12 is always high. i did have a nerve conduction test done and it was borderline---the doc figured I would eventually have to have the surgery. i put it off for about a year after the study, but my hands were cramping up on me too much and I couldn't even hold a book without pain. i had surgery on both wrists about 4 years ago. I definitely needed it done. I've played the piano for about 38 years and i crochet alot.
I have also told him that i would probably do alot better if I got alot more positive from him than negative. He agreed that that would probably help. i do think I am seeing some efforts on his part---after reading all of your response, I think I need to put in a bit more effort on MY part.
Thanks for taking the time to address each of my concerns. i don't know if I will get off of the cortisol---so I really hope that I can get the dosage right and the timing right---i think that should help. I think my dosage is not high enough---i noticed more problems when I raised my thyroid meds------the doc told me to watch for problems when the dosage was raised.
Unbekannt, your response seems to verify what i am thinking about my cortisol dosage not being high enough.
Thanks all!!
I have definitely been snippy when I don't have enough HC in me, but "enough" is turning out to be 30-40mg a day when I'm prescribed 15mg. I haven't written that email to my endo yet about how I need help with my symptoms before January, I'm not sure what to say.
I'm still having wobbliness/confusion/fogginess, muscle weakness, abdominal pain, emotional instability, and what seems to be a SLOW heartrate in between HC doses. I got a coupon for a bp cuff and intend to buy one this coming month.
I am still in the process of moving house, getting over infections, and having a near-constant panic attack unless I have enough (too much?) hydrocortisone and, frequently, Klonopin in me.
I have been snippy.
I'm still having wobbliness/confusion/fogginess, muscle weakness, abdominal pain, emotional instability, and what seems to be a SLOW heartrate in between HC doses. I got a coupon for a bp cuff and intend to buy one this coming month.
I am still in the process of moving house, getting over infections, and having a near-constant panic attack unless I have enough (too much?) hydrocortisone and, frequently, Klonopin in me.
I have been snippy.
1. I am glad that are you confident with the one endo who knows what he is talking about and is keen to address you symptoms and not your blood work results if the two conflict with each other. This is the M.O. of the best neurosurgeons in my experience;
2. Adolsterone - I have no idea of its importance with respect to sex drive/hormones but recall that I was testted for that and my results were well within the "normal" range;
3. You ask "from a mans point of view, what would make a man want sex, but refuse to initiate it, then get upset when nothing happens for a while?". There are multiple answers. First, a man's fear or impaired performance has a lot to do with his interest in sex (acts or thoughts) being raised by if he feels that he will not perform well, he will not seek it BUT will pray his partner would be the one to consciously avoid having sex thereby allowing him to (falsely) rant that he is being denied sex! Think of it like a guy wanting to ask out the hottest girl to a dance but fearful she will turn him down. To him, the best of all possibilities is that she hints to him that she is not interested AFTER he has decided for himself that he has no balls to ask her out.
You say that "In my younger days, i had alot of drive, and he would turn me down so often, I can't tell you how hurt i felt. Now that my drive is gone, he tells me that he really DID want to have sex with me all those times he turned me down".
First, regardless of any illness a person has, sex drive falls as we age. The velocity of the fall differs from person to person.
Second, his comment that he really DID want to have sex with you then is to be a load of BS. If he really wanted sex then, why did he turn YOU down? A guy would ONLY turn a woman down if "if he was not in the mood". And occasionally not being in the mood is normal. But if a person OFTEN is not in the mood, a good first guess is that the guy may performance anxiety.
You ask " Did you feel like the HC affected your sex life, or do you think it was the stress you had because your HC was low that affected it. If I understand you right, it sounds like you got your cortisol levels into a normal range, which relieved your stress levels, then you weaned off the HC because you no longer needed it--and then your sex life returned to normal---did I follow you right? "
I cannot separate my stress levels affecting all my moods (sex, people skills etc) from the HC I took to correct it. The two are linked intimately. I weaned off the HC when my cortisol levels improved to be within the normal range, admittedly they do fluctuate but as I was told: many fluctuations are ok, it is when the PM level is greater than the AM level that you should be worried.
And yes, post weaning the sex drive improved, like ALL things improved when I got off the medication. Perhaps it was the stress that affected my drive. Perhaps it was the HC passing through me. I dont know. But I know that every month I travel away from the date I stopped the HC (exactly 1 yr ago) I feel better.
Out of interest, have you checked your Vit B6 and B12? I ask because I just started taking B6 supplements (for an unrelated neurological problem) and while it does not help with THAT problem, I do see a rise in how well I feel. Maybe you should try that too?
4. You mention you may have carpal tunnel. Have you ahd a nerve conduction study performed? Have you had a MRI or u/s to confirm it is carpal tunnel?
5. You say "I have read that low thyroid, low cortisol, low estrogen, low testosterone, low DHEA, and stress, and the condition of the relationship can all affect a person's libido and sex drive. I'm afraid it might never come back". I am not a physician but I do know that in the case of a guy with normal values of testosterone (I am not sure if this applies only to naturally normal values or also to normal values achieved through meds) meds like Levitra and Viagra help in the performance of a sexual act.
6. Pls underatnd that "low libido" and "low" levels of hormones are different animals. It is possible to have high levels of the hormones (but well within the normal range) and to have very low libido.
7. You are (naturally) worried about how you and your husband respond to each other emotionally and physically.
You can tell him from me that until you are off the HC (and for a while afterwards) while you may be very pleasant at times to him and to others, you are NOT the same person you were before and you need latitude to exhibit behaviour that is out of character with how you have related to in the past.
If he values the marriage the will give you all the slack you need. I recovered in a large part due to being single and not having to make excuses to anyone; not being dependent on anyone and not having to answer to anyone.
You must make it clear to him that you will return to good health far far quicker if he lays off; allows you to be erratic; allows you to be selfish and allows you to be sick and not pretend you're Supergirl.
Otherwise the road to recovery will take longer.
2. Adolsterone - I have no idea of its importance with respect to sex drive/hormones but recall that I was testted for that and my results were well within the "normal" range;
3. You ask "from a mans point of view, what would make a man want sex, but refuse to initiate it, then get upset when nothing happens for a while?". There are multiple answers. First, a man's fear or impaired performance has a lot to do with his interest in sex (acts or thoughts) being raised by if he feels that he will not perform well, he will not seek it BUT will pray his partner would be the one to consciously avoid having sex thereby allowing him to (falsely) rant that he is being denied sex! Think of it like a guy wanting to ask out the hottest girl to a dance but fearful she will turn him down. To him, the best of all possibilities is that she hints to him that she is not interested AFTER he has decided for himself that he has no balls to ask her out.
You say that "In my younger days, i had alot of drive, and he would turn me down so often, I can't tell you how hurt i felt. Now that my drive is gone, he tells me that he really DID want to have sex with me all those times he turned me down".
First, regardless of any illness a person has, sex drive falls as we age. The velocity of the fall differs from person to person.
Second, his comment that he really DID want to have sex with you then is to be a load of BS. If he really wanted sex then, why did he turn YOU down? A guy would ONLY turn a woman down if "if he was not in the mood". And occasionally not being in the mood is normal. But if a person OFTEN is not in the mood, a good first guess is that the guy may performance anxiety.
You ask " Did you feel like the HC affected your sex life, or do you think it was the stress you had because your HC was low that affected it. If I understand you right, it sounds like you got your cortisol levels into a normal range, which relieved your stress levels, then you weaned off the HC because you no longer needed it--and then your sex life returned to normal---did I follow you right? "
I cannot separate my stress levels affecting all my moods (sex, people skills etc) from the HC I took to correct it. The two are linked intimately. I weaned off the HC when my cortisol levels improved to be within the normal range, admittedly they do fluctuate but as I was told: many fluctuations are ok, it is when the PM level is greater than the AM level that you should be worried.
And yes, post weaning the sex drive improved, like ALL things improved when I got off the medication. Perhaps it was the stress that affected my drive. Perhaps it was the HC passing through me. I dont know. But I know that every month I travel away from the date I stopped the HC (exactly 1 yr ago) I feel better.
Out of interest, have you checked your Vit B6 and B12? I ask because I just started taking B6 supplements (for an unrelated neurological problem) and while it does not help with THAT problem, I do see a rise in how well I feel. Maybe you should try that too?
4. You mention you may have carpal tunnel. Have you ahd a nerve conduction study performed? Have you had a MRI or u/s to confirm it is carpal tunnel?
5. You say "I have read that low thyroid, low cortisol, low estrogen, low testosterone, low DHEA, and stress, and the condition of the relationship can all affect a person's libido and sex drive. I'm afraid it might never come back". I am not a physician but I do know that in the case of a guy with normal values of testosterone (I am not sure if this applies only to naturally normal values or also to normal values achieved through meds) meds like Levitra and Viagra help in the performance of a sexual act.
6. Pls underatnd that "low libido" and "low" levels of hormones are different animals. It is possible to have high levels of the hormones (but well within the normal range) and to have very low libido.
7. You are (naturally) worried about how you and your husband respond to each other emotionally and physically.
You can tell him from me that until you are off the HC (and for a while afterwards) while you may be very pleasant at times to him and to others, you are NOT the same person you were before and you need latitude to exhibit behaviour that is out of character with how you have related to in the past.
If he values the marriage the will give you all the slack you need. I recovered in a large part due to being single and not having to make excuses to anyone; not being dependent on anyone and not having to answer to anyone.
You must make it clear to him that you will return to good health far far quicker if he lays off; allows you to be erratic; allows you to be selfish and allows you to be sick and not pretend you're Supergirl.
Otherwise the road to recovery will take longer.
My ortho doesn't normally do my blood work---he was only running the thyroid test before he did carpal tunnel surgery on me because he wanted to be sure I really had carpal tunnel---he knew that low thyroid could cause carpal tunnel symptoms. I was just lucky that he felt like a level near the bottom of "normal" was too low. he actually told me to take the blood test to whoever normally treated my thyroid. It happened to be my obgyn. I had not been diagnosed as low thyroid---i had nodules and was put on synthroid for thyroid suppression therapy by our local surgeon. The surgeon had moved, so my obgyn and family doc were both supposed to know how to follow through with my thyroid suppression therapy.
My obgyn looked at my test and told me it was normal---because it was within the "normal" lab range. i told him the ortho thought it was too low and was causing carpal tunnel---so my obgyn got me into an endo pretty quick. (near end of year kind of thing).
Both endos i have seen seemed to look at the lab ranges more than me as a person, although one of them did say that she treated the symptoms and not the blood test---but she was so unorganized and made so many mistakes and never even raised my armour above 1/2 grain.
The doc I am seeing now does not believe that lab ranges can be trusted---he says they are taken from a basically sick population full of undiagnosed problems. His goal is to try and balance my entire endocrine system by getting my lab values to levels that would be the levels for optimal health. He also told me unless I am low in something, I do not need to supplement it. I am on several specific vitamin and mineral supplements along with the thyroid and cortef.
He ran a whole bunch of blood work before I even saw him---but because the cortisol levels were iffy---he waited until he could clinically evaluate me before making a decision on whether or not I needed to be on HC---plus, he had to see me before he could treat me. I feel like he knows more about the endocrine system than either of the endos i saw---but he left thoracic surgery to study the endocrine system and how to properly balance it.
As far as the sex life, i am sure that stress is playing a role in it, but I also think there is a physical reason. Over the last 4-5 years it has come and gone. The first time it "went" my testosterone levels were flagged low---even for a woman. My DHEA was also low--there were some other things tested that were off--but no other sex hormones were off---except the sex hormone binding globuline was high. Aldosterone was never tested----does it come in to play in this? I know it is on the list of things waiting to be tested by the new doc.
Once my DHEA levels and my testosterone levels were back to normal levels---my sex life was alot closer to normal. I guess she had probably gotten most things back to the "normal lab" ranges. Interestingly, if i remember right, my testosterone levels took the longest to return to a normal level---maybe i had trouble getting the right dosage for a woman--she tried to give me a mans dosage that was going to cost a fortune--my obgyn called in the right dosage to a compounding pharmacy for about 10 bucks.
I am waiting to get my hormone levels tested---he is also going to test my ACTH plasma levels. Hopefully that should help me know if being on HC is going to be a permanent thing for me or not. In the past, they were really low.
Did you feel like the HC affected your sex life, or do you think it was the stress you had because your HC was low that affected it. If I understand you right, it sounds like you got your cortisol levels into a normal range, which relieved your stress levels, then you weaned off the HC because you no longer needed it--and then your sex life returned to normal---did I follow you right?
I have read that low thyroid, low cortisol, low estrogen, low testosterone, low DHEA, and stress, and the condition of the relationship can all affect a person's libido and sex drive. I'm afraid it might never come back.
My husband has been a pretty good sport, but because he has issues about being the initiator, I have to initiate most of our physical relationship---and when i have no drive for it, I have to make a real effort to remember to make sure things happen, or he gets kind of cranky.
Now, tell me, from a mans point of view, what would make a man want sex, but refuse to initiate it, then get upset when nothing happens for a while?? In my younger days, i had alot of drive, and he would turn me down so often, I can't tell you how hurt i felt. Now that my drive is gone, he tells me that he really DID want to have sex with me all those times he turned me down. Does any of this make sence?
Now that I don't have the drive, and my body doesn't respond a whole lot--- I honestly try to make the effort to see that we keep that part of our marriage going, because I think it is an important part of a marriage relationship, and we seem to get along better if I make sure something happens. it's not like it is an unpleasant thing for me to do--it just isn't an exciting thing for me to do.
Sorry this was so long--i'm just trying to make sence of my life and trying to figure out how to know what kind of "normal" I can expect. If I am never able to get off the cortef--does that mean I am likely to be a little more emotionally sensitive forever? It sounds like I may have to learn to make it a habit to ALWAYS think before I speak or act.
I can't believe I just spilled my guts like this---and to a man that i don't even know---but i guess that's why we have these kind of boards---sometimes it is easier to talk to a stranger that we don't have to run into on the street and be embarrassed because they know everything we are struggling with!!
My obgyn looked at my test and told me it was normal---because it was within the "normal" lab range. i told him the ortho thought it was too low and was causing carpal tunnel---so my obgyn got me into an endo pretty quick. (near end of year kind of thing).
Both endos i have seen seemed to look at the lab ranges more than me as a person, although one of them did say that she treated the symptoms and not the blood test---but she was so unorganized and made so many mistakes and never even raised my armour above 1/2 grain.
The doc I am seeing now does not believe that lab ranges can be trusted---he says they are taken from a basically sick population full of undiagnosed problems. His goal is to try and balance my entire endocrine system by getting my lab values to levels that would be the levels for optimal health. He also told me unless I am low in something, I do not need to supplement it. I am on several specific vitamin and mineral supplements along with the thyroid and cortef.
He ran a whole bunch of blood work before I even saw him---but because the cortisol levels were iffy---he waited until he could clinically evaluate me before making a decision on whether or not I needed to be on HC---plus, he had to see me before he could treat me. I feel like he knows more about the endocrine system than either of the endos i saw---but he left thoracic surgery to study the endocrine system and how to properly balance it.
As far as the sex life, i am sure that stress is playing a role in it, but I also think there is a physical reason. Over the last 4-5 years it has come and gone. The first time it "went" my testosterone levels were flagged low---even for a woman. My DHEA was also low--there were some other things tested that were off--but no other sex hormones were off---except the sex hormone binding globuline was high. Aldosterone was never tested----does it come in to play in this? I know it is on the list of things waiting to be tested by the new doc.
Once my DHEA levels and my testosterone levels were back to normal levels---my sex life was alot closer to normal. I guess she had probably gotten most things back to the "normal lab" ranges. Interestingly, if i remember right, my testosterone levels took the longest to return to a normal level---maybe i had trouble getting the right dosage for a woman--she tried to give me a mans dosage that was going to cost a fortune--my obgyn called in the right dosage to a compounding pharmacy for about 10 bucks.
I am waiting to get my hormone levels tested---he is also going to test my ACTH plasma levels. Hopefully that should help me know if being on HC is going to be a permanent thing for me or not. In the past, they were really low.
Did you feel like the HC affected your sex life, or do you think it was the stress you had because your HC was low that affected it. If I understand you right, it sounds like you got your cortisol levels into a normal range, which relieved your stress levels, then you weaned off the HC because you no longer needed it--and then your sex life returned to normal---did I follow you right?
I have read that low thyroid, low cortisol, low estrogen, low testosterone, low DHEA, and stress, and the condition of the relationship can all affect a person's libido and sex drive. I'm afraid it might never come back.
My husband has been a pretty good sport, but because he has issues about being the initiator, I have to initiate most of our physical relationship---and when i have no drive for it, I have to make a real effort to remember to make sure things happen, or he gets kind of cranky.
Now, tell me, from a mans point of view, what would make a man want sex, but refuse to initiate it, then get upset when nothing happens for a while?? In my younger days, i had alot of drive, and he would turn me down so often, I can't tell you how hurt i felt. Now that my drive is gone, he tells me that he really DID want to have sex with me all those times he turned me down. Does any of this make sence?
Now that I don't have the drive, and my body doesn't respond a whole lot--- I honestly try to make the effort to see that we keep that part of our marriage going, because I think it is an important part of a marriage relationship, and we seem to get along better if I make sure something happens. it's not like it is an unpleasant thing for me to do--it just isn't an exciting thing for me to do.
Sorry this was so long--i'm just trying to make sence of my life and trying to figure out how to know what kind of "normal" I can expect. If I am never able to get off the cortef--does that mean I am likely to be a little more emotionally sensitive forever? It sounds like I may have to learn to make it a habit to ALWAYS think before I speak or act.
I can't believe I just spilled my guts like this---and to a man that i don't even know---but i guess that's why we have these kind of boards---sometimes it is easier to talk to a stranger that we don't have to run into on the street and be embarrassed because they know everything we are struggling with!!
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I would go find a doctor who DOES know what they are doing - 10mg is generally too low a replacement dose. One does 15mg on up - and you take the bulk in the morning with a small amount in the late afternoon (this is a guideline).
The doctor should not put you on hydrocortisone replacement dose without doing the proper testing - such as a stimulation test and the adrenal antibody test. You kinda want to know if you are primary (adrenal) or secondary (pituitary) to know if other issues may arise. ACTH can help determine that but the test is often not done correctly - for instance, the labs rarely use a chilled tube and the tech may put it in a bin and not the centrifuge immediately in which case the result is low just from lab handling and what your *real* level is - anyone's guess.
HC has a very short half life - which is a good thing as the side effects long term are then minimal (unless doses are too high) and testing can be done after a couple of days.
For a chronic disease such as this - you should have regular appointments. You would need regular refills - as well as an emergency kit (IM needle, solu-cortef acto-vial, etc) and a medic alert bracelet or the like - this is a serious illness with life-threatening implications so your doctor does not have the skills you need. Get copies of your records and find a good doctor.