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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 am not a doc or lawyer either - and I don't profess to be perfect (as I am a patient too, and I don't feel well every day).
My doc is fine - those levels did not relate to me? And I know people can pass a stim test and still be borderline.
My doc is fine - those levels did not relate to me? And I know people can pass a stim test and still be borderline.
Low cortisol certainly can contribute to anxiety. The HPA axis senses that there is not enough free cortisol and, in response, begins releasing noradrenaline and other "speedy" hormones to compensate. Also, your endo is bordering on malpractice (not sure where you live, and I am not an attorney nor am I a doctor), but whether your cortisol was 5 or .5 that is TOO low. Also, to get an accurate stim test without the worries of going without the steroids that it sounds like you need, a well-informed endo would put you on dexamethasone (another steroid) for a couple of weeks. It does not work as quickly as hydrocortisone, but it stays in your system longer. Plus, it does not interfere with the lab assays--meaning that you can get an accurate pic of what your actual cortisol is. Good luck--and do NOT let the endo push you around. I'm convinced that most endocrinologists hit themselves in the head with a brick as soon as they finish med school, thereby forgetting anything they've learned. Also have hi or her check renin and aldosterone. If you "pass" the stim test but still have low ACTH and AI-type symptoms, you very well could have secondary adrenal insufficiency...
You mention:
" Right now I am trying the thyroid low cortisol route to see if things improve. So far, I am up to 210 mgs of NP thyroid--it is similar to armour--just not as nasty tasting--and I have no sighns of having too much thyroid.
I have seen psychiatrists, psychologist, counselors, you name it---i even resorted to ECT once. Since antidepressants do not help, I am beginning to think it may be partly to having had an undertreated thyroid for so many yyears of my life".
It seems like you could have one of many conditions. If that was the feeling I received from visiting so many physicians then I would ask myslef ONE question above ALL else
AM I HAPPY WITH MY CURRENT ENDOCRINOLOGIST
If he/she is great then you would have certainty in what condition you have.
You say"
"I did ask the psychiatrist about dysthemia, but he didn't think that was my problem---he really seemed to want to diagnose me with bipolar NOS-----but I have discovered I don't fit the symptoms---they tried to diagnose my son withit---but he doesn't fit the symptoms, either---but they REALLY tried to push it with him."
It seems to me that the shrink is lousy. Move on to someone else. No shame in dumping an uniformed or incompetent so called 'professional'.
You say
"I think I have too many underlying issues---besides the health issues---to ever be able to resolve them all!!! My hubby used to say he thought that things would get better when I got better. When I pointed out that physically I may never get better, he said that he woulod learn to deal with it----I figure he better learn to deal with it NOW".
Before we explore those I feel that as stated earlier, getting a great endo and now a great shrink will be the surest and quickest route to good health
" Right now I am trying the thyroid low cortisol route to see if things improve. So far, I am up to 210 mgs of NP thyroid--it is similar to armour--just not as nasty tasting--and I have no sighns of having too much thyroid.
I have seen psychiatrists, psychologist, counselors, you name it---i even resorted to ECT once. Since antidepressants do not help, I am beginning to think it may be partly to having had an undertreated thyroid for so many yyears of my life".
It seems like you could have one of many conditions. If that was the feeling I received from visiting so many physicians then I would ask myslef ONE question above ALL else
AM I HAPPY WITH MY CURRENT ENDOCRINOLOGIST
If he/she is great then you would have certainty in what condition you have.
You say"
"I did ask the psychiatrist about dysthemia, but he didn't think that was my problem---he really seemed to want to diagnose me with bipolar NOS-----but I have discovered I don't fit the symptoms---they tried to diagnose my son withit---but he doesn't fit the symptoms, either---but they REALLY tried to push it with him."
It seems to me that the shrink is lousy. Move on to someone else. No shame in dumping an uniformed or incompetent so called 'professional'.
You say
"I think I have too many underlying issues---besides the health issues---to ever be able to resolve them all!!! My hubby used to say he thought that things would get better when I got better. When I pointed out that physically I may never get better, he said that he woulod learn to deal with it----I figure he better learn to deal with it NOW".
Before we explore those I feel that as stated earlier, getting a great endo and now a great shrink will be the surest and quickest route to good health
I son't think I have fibromyalgia--I think it is a symptom of something else. I spent 4 days in the ER getting treated for staph infection this summer---and that is exactly what one of the nurses told me he thought about it, also.
Right now I am trying the thyroid low cortisol route to see if things improve. So far, I am up to 210 mgs of NP thyroid--it is similar to armour--just not as nasty tasting--and I have no sighns of having too much thyroid.
I have seen psychiatrists, psychologist, counselors, you name it---i even resorted to ECT once. Since antidepressants do not help, I am beginning to think it may be partly to having had an undertreated thyroid for so many yyears of my life.
I did ask the psychiatrist about dysthemia, but he didn't think that was my problem---he really seemed to want to diagnose me with bipolar NOS-----but I have discovered I don't fit the symptoms---they tried to diagnose my son withit---but he doesn't fit the symptoms, either---but they REALLY tried to push it with him.
I think I have too many underlying issues---besides the health issues---to ever be able to resolve them all!!! My hubby used to say he thought that things would get better when I got better. When I pointed out that physically I may never get better, he said that he woulod learn to deal with it----I figure he better learn to deal with it NOW.
Also, when I learned how much stress can affect you mentally and physically, I told him that if we did not change the way things were in our relationship that I was NEVER going to get better--I think he realized I was right. He seems to be making more efforts recently to work with me--and when I chewed him out the other day about something he did that I felt was innappropriate----at least in the time and place I talked to him about it---he said it was fine and that he probably deserved it. (he did)
Right now I am trying the thyroid low cortisol route to see if things improve. So far, I am up to 210 mgs of NP thyroid--it is similar to armour--just not as nasty tasting--and I have no sighns of having too much thyroid.
I have seen psychiatrists, psychologist, counselors, you name it---i even resorted to ECT once. Since antidepressants do not help, I am beginning to think it may be partly to having had an undertreated thyroid for so many yyears of my life.
I did ask the psychiatrist about dysthemia, but he didn't think that was my problem---he really seemed to want to diagnose me with bipolar NOS-----but I have discovered I don't fit the symptoms---they tried to diagnose my son withit---but he doesn't fit the symptoms, either---but they REALLY tried to push it with him.
I think I have too many underlying issues---besides the health issues---to ever be able to resolve them all!!! My hubby used to say he thought that things would get better when I got better. When I pointed out that physically I may never get better, he said that he woulod learn to deal with it----I figure he better learn to deal with it NOW.
Also, when I learned how much stress can affect you mentally and physically, I told him that if we did not change the way things were in our relationship that I was NEVER going to get better--I think he realized I was right. He seems to be making more efforts recently to work with me--and when I chewed him out the other day about something he did that I felt was innappropriate----at least in the time and place I talked to him about it---he said it was fine and that he probably deserved it. (he did)
You mention FIBROMYALGIA.
For what it's worth, the nurses I respect the most consider such a diagnosis as BS. They claim that physicians will lable something as FIBROMYALGIA when they dont known what a patient has and every illness or symptom should be treated after its cause is properly identified.
You mention that your husband came out of a crappymarriage--where he and his ex were both self-centered. WOW. What a combination! Two self centered people in the one marriage. No wonder THAT didnt last :-)
You mention the medications you took for anxiety and depression. Did you see a psychologist or psychiatrist? Did you resolve the underlying isues?
You say you "just never felt like I was following through with things i would start--I'd just lose interest or energy". Did you consider you may have DYSTHEMIA? Which is very common and is a low level form of depression (which many folk exhibit for decades) and for which there is no medication.
It self corrects very often.
You say "I have been thinking that I need to learn to talk much less--but this would involve almost a major personality change for me---i have always been a talker" . Me too. Forget that ppl say they love a big talker. Most ppl love a great listener and being a great listener is a great asset to have in ALL fields of endevour.
You indicate that your husband has some depression issues going on. He must get help from someone like a psychologist or he will not improve. I know ppl who refuse help and they become delusional andvery introverted as a result.
Interesting what you say on neuropathy. Mine too has no explanation. Looks liek I will have to investigate the matter more and more. You mention arthritis and I was checked for that, but that doesnt explain it.
Thanks :-)
I think any problems ihave nwo with wrist pain and cramping are most likely related to the generalized pain issue i have---we've been calling it fibromyalgia for years--but i don't have an official diagnosis--only chronic pain. I think my wrists tend to flare up with weather changes just like arthritis does or old wounds such as a broken bone from your childhood starts to ache when you're 50. i broke my tailbone having one of my kids and it used to ache in the winter sometimes for several years after i had her (rarely hurts me now) but, I always thought it was funny when it hurt---the idea of having arthritis in your bum iwas just funny to me---I know, i have a weird sence of humor.
My husband came out of a crappymarriage--where he and his ex were both self-centered---he was well aware of the mistakes he made---he told me about the mistakes he made and what he thought it took to make a good marriage. AND, in the early part of our marriage he actually did them--he wasn't perfect of course, but he put in the effort---so i know he knows what it takes to make a good marriage--just like you have seen dysfunctional marriages, he knew he had screwed his marriage up and didn't want to do it again.
I don't think my weakness is excessive in my hands--and there is none in my feet. I probably had stronger hands than most before the carpal tunnel---i could open almost any jar when other people couldn't---but i played the piano alot----i think it gave me stronger fingers and hands.
I have taken more medications for anxiety and depression than i could even count---I even resorted to ECT at one time in desperation---but only had 3 treatments. I do not tolerate antidepresssants for some reason. The side effects are more than i can deal with. They used to have to start me on lower than normal starting doses and titrate them up over a longer period of time--and if i was lucky enough to find one that worked---it was usually at a lower than normal dosage---and then it would usually quit working within a few months.
They tried to label me bipolar NOS----but i have never been manic in my life, and the medications that treat bipolar depression didn't work on me---i think they called that one wrong. Once every blue moom I would have a really good day and accomplish alot of things. i think they interpreted that to be a "manic " episode. i actually feel like I was functioning more like a normal, undepressed and organized mother on those days. i remember that i used to thing that if I could feel like that most of the time i could get so much done.
Don't get me wrong, I did manage to get things done--i did alot of canning and sewing and gardening when i had a houseful of little twins---at one point I had 3 children 2yrs old and under.(twins born a month after the older one turned 2). I just never felt like I was following through with things i would start--I'd just lose interest or energy. some days I felt like i had lead running through my veins. I think that whatever i have going on now has been comming on for a long time----or else I have had it to a certain degree my whole life----and the stress of my life just brought it to the forefront.
I have been thinking that I need to learn to talk much less--but this would involve almost a major personality change for me---i have always been a talker----but, there have been people that have told me that my talking alot is one of the things they love about me---I have also had people tell me that when they moved into our church, that either I was the only person that would talk to them, or that I was the only person they felt comfortable talking to---because instead of just generic greetings---I actually TALKED to her. My husband just doesn't like the things i talk about. too much medical talk---true to a certain extent--but he has gotten so set against it that ANY medical talk makes him angry. He forgets the years he played basketball and so many of his conversations were dominated by basketball talk.
I've also had to remind him that before i had health problems, he used to cut me off and tell me he wasn't interested in what i was trying to talk about---and it wasn't any particular thing--just conversation. Also, he has only had an issue about me "talking too much" in the last two years. I've talked alot for the 24 1/2 years we have been married---and he never complained that i talked too much--or felt like he had to protect other peole from me talking too much.
When we dated, that is almost all we did---we talked for hours.
I think he understands that I am not trying to interupt him--but your idea about asking him to let me know when he is done is a good idea.
I definitely think that my husband has some dep[ression isssues going on, but getting him to get help for it is another issue--even though he admits he thinks he is depressed. It would take someone else he respects to get him to get some help.
I have a friend who has pain in her fingertips---they have not been able to find any cause for it. it is neuropathy--but no explaination for why she has it, except that she does have alot of the symptoms of polycystic ovarian syndrome, which is an endocrine problem and can be related to diabetes---and diabetes can cause neuropathy.
i get neuropathy in various spots on my body. Most recent one was a finger--started out feeling like an arthritic joint, but the pain moved to the bone between the two joints. Hurt alot if pressed hard---but the skin over the top of it was numb if touched lightly. It lasted a month or two---and then went away. i have had this happen a number of times--but they always go away---but, i also know that i have endocrine problems.
Might be something for you to check in to.
My husband came out of a crappymarriage--where he and his ex were both self-centered---he was well aware of the mistakes he made---he told me about the mistakes he made and what he thought it took to make a good marriage. AND, in the early part of our marriage he actually did them--he wasn't perfect of course, but he put in the effort---so i know he knows what it takes to make a good marriage--just like you have seen dysfunctional marriages, he knew he had screwed his marriage up and didn't want to do it again.
I don't think my weakness is excessive in my hands--and there is none in my feet. I probably had stronger hands than most before the carpal tunnel---i could open almost any jar when other people couldn't---but i played the piano alot----i think it gave me stronger fingers and hands.
I have taken more medications for anxiety and depression than i could even count---I even resorted to ECT at one time in desperation---but only had 3 treatments. I do not tolerate antidepresssants for some reason. The side effects are more than i can deal with. They used to have to start me on lower than normal starting doses and titrate them up over a longer period of time--and if i was lucky enough to find one that worked---it was usually at a lower than normal dosage---and then it would usually quit working within a few months.
They tried to label me bipolar NOS----but i have never been manic in my life, and the medications that treat bipolar depression didn't work on me---i think they called that one wrong. Once every blue moom I would have a really good day and accomplish alot of things. i think they interpreted that to be a "manic " episode. i actually feel like I was functioning more like a normal, undepressed and organized mother on those days. i remember that i used to thing that if I could feel like that most of the time i could get so much done.
Don't get me wrong, I did manage to get things done--i did alot of canning and sewing and gardening when i had a houseful of little twins---at one point I had 3 children 2yrs old and under.(twins born a month after the older one turned 2). I just never felt like I was following through with things i would start--I'd just lose interest or energy. some days I felt like i had lead running through my veins. I think that whatever i have going on now has been comming on for a long time----or else I have had it to a certain degree my whole life----and the stress of my life just brought it to the forefront.
I have been thinking that I need to learn to talk much less--but this would involve almost a major personality change for me---i have always been a talker----but, there have been people that have told me that my talking alot is one of the things they love about me---I have also had people tell me that when they moved into our church, that either I was the only person that would talk to them, or that I was the only person they felt comfortable talking to---because instead of just generic greetings---I actually TALKED to her. My husband just doesn't like the things i talk about. too much medical talk---true to a certain extent--but he has gotten so set against it that ANY medical talk makes him angry. He forgets the years he played basketball and so many of his conversations were dominated by basketball talk.
I've also had to remind him that before i had health problems, he used to cut me off and tell me he wasn't interested in what i was trying to talk about---and it wasn't any particular thing--just conversation. Also, he has only had an issue about me "talking too much" in the last two years. I've talked alot for the 24 1/2 years we have been married---and he never complained that i talked too much--or felt like he had to protect other peole from me talking too much.
When we dated, that is almost all we did---we talked for hours.
I think he understands that I am not trying to interupt him--but your idea about asking him to let me know when he is done is a good idea.
I definitely think that my husband has some dep[ression isssues going on, but getting him to get help for it is another issue--even though he admits he thinks he is depressed. It would take someone else he respects to get him to get some help.
I have a friend who has pain in her fingertips---they have not been able to find any cause for it. it is neuropathy--but no explaination for why she has it, except that she does have alot of the symptoms of polycystic ovarian syndrome, which is an endocrine problem and can be related to diabetes---and diabetes can cause neuropathy.
i get neuropathy in various spots on my body. Most recent one was a finger--started out feeling like an arthritic joint, but the pain moved to the bone between the two joints. Hurt alot if pressed hard---but the skin over the top of it was numb if touched lightly. It lasted a month or two---and then went away. i have had this happen a number of times--but they always go away---but, i also know that i have endocrine problems.
Might be something for you to check in to.
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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.