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2214462 tn?1339427983

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!

Best Answer
Avatar universal
What time exactly were the tests done? Did they do sodium and potassium testing as well?

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.
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Avatar universal
Hi

I am back. I have time between seminar sessions.

Let's see.... you ask "what profession are you in--or are you just a very observant people watcher?" I think I am the latter. I am an economist by training but know many dysfunctional marriages, so I have (to a degree) learned what works in a marriage and what doesn't. I also saw a psychologist years ago when I was dating a narcisstic woman.

As to your hands, you say that problems predated the surgery. Ok then, that means any post surgical problems are in part not related to carpal tunnel.

You mention you cannot open sealed jars. Do you have weaknesses in both hands or feet? I ask because if yes, then something else needs to be investigated as the problem.

You say "I've had alot of depression and anxiety--and I am probably a little more of a needy person than I would like to be". Have you taken meds for this?

You say "I don't know if my jumping in to voice my opinion is new or not.  I grew up in a very large family, mostly girls, and when we got together we had a tendency to talk over each other--so in that way, it is probably not new--but It was mostly one visit with someone, when I  jumped in angrily, when it was supposed to be his turn to speak that was the final straw". I was the same. I learned over time two things that make life more pleasurable. First, you do not always have to talk. Sometimes it's best to stay quiet (even if it feels unnatural). Second, I learned patience. Learn
to talk when it is your turn. Wit for your turn. Speak briefly and softly. It works for the most successful politicians!

You talk about your husband thinking you are interrupting. I suggest
you ask that whenever he speaks to make it obvious when he is done so that is your cue to ask a question or seek clarification.


You say your husband may be anemic. Given the symptoms you list I suggest he get tested (blood work) BUT those symptoms can also signify depression (mild or medium) and for that a psychiatrist is needed for a diagnosis.

For many years I was like that. work, eat, sleep, stay home and preferred not to go out. I was diagnosed with very mild depression, changed jobs and improved. The job I had made me stale, angry and frustrated and this carried over into every aspect of my life. Maybe yr husband is similar?

You ask 'What is happening with your wrist that has you concerned'?  Well I had a tumor removed but now it hurts to type more than a few lines.
The pain is only at the fingertips and an xray showed nothing.
I wonder if an mri will show anything. I hope it is not more serious ie. related to the brain because that can take a while to diagnose and who knows what if anything can be done to treat that.

The scar you mention on the right wrist is like mine, small.
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Avatar universal
Hi, I can't reply at this time as I am in a seminar - without email access  - for a week. I'll get back to you when I can.
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Avatar universal
You've never been married---and you are this insightful?????   What profession are you in--or are you just a very observant people watcher?

As far as my hands being weaker--they were losing strength before I had the surgery and i have never done any exercises to strengthen them.  Probably if i would just take some time to play the piano every day I could kill two birds with one stone---I'd build up strength back in my hands--and I'd be able to play like I could when I was younger--and I wouldn't blunder through the hymns at church!!     I know if carpal tunnel goes on long enough that you can get permanent nerve damage and never get some of the strength back---but i don't think I got to that point.

I used to be able to open just about any sealed jar there was----i can't do that anymore---time for the rubber circles!!LOL!!  Maybe ALOT weaker is too strong--they are weaker, but it is not a problem for me---my handwriting was crappy before---so that's not a major loss to have it a little worse.

As far as different needs in a marriage----glad to hear you say that is a common thing to happen over time.  My hubby and I have both discussed that our most important goal should be to be more worried about each others' happiness than we are about our own----it just isn't as easy to put it into practice s it is to say it.. Also, there have been alot of changes in my family lately---and I've had alot of depression and anxiety--and I am probably a little more of a needy person than I would like to be.

However, I am making efforts to work on my health, which includes the anxiety and depression--hopefully the neediness will lessen over time.

I think the timeline is a good idea---but I think it would be better to wait a little to suggest it, and I think it would be better if the sounding board were the one to suggest it.

I don't know if my jumping in to voice my opinion is new or not.  I grew up in a very large family, mostly girls, and when we got together we had a tendency to talk over each other--so in that way, it is probably not new--but It was mostly one visit with someone, when I  jumped in angrily, when it was supposed to be his turn to speak that was the final straw.

One thing I do, that my husband often interprets as me interupting him, is that when he takes a break in a sentence, I will sometimes try and ask him a question.  he yells and says I'm interrupting, when actually I am just trying to clarify something and make sure I am following whatever he is telling me.   I explained this to him recently---I think he is starting to get it.

I like the idea of making a list of issues. The sounding board has a wife that is also starting to have some health issues---and I know in the past, when he and my husband would visit, the sounding board would mention things that his own wife did that bothered him---I think it made my husband realize that other people have issues that they don't always agree on in their marriages, too----hopefully, if they continue to talk that openly, he will also realize that differences and disagreements don't have to lead to excessive anger.

We were experimenting with something last night that can indicate that a person might be anemic---and it looks like my hubby might be anemic---this could help explain his lack of wanting to do anything but get in bed, eat, and watch TV when he gets home. So---I'm hoping that with some counseling from a good sounding board, some work on his thyroid, getting his iron up---and hopefully getting him to address his depression---maybe things will improve.

Actually, we've been doing ok recently,  I never know when things are going to go sour unexpectantly, but they are not as bad when they do as they used to be.

Also, he has actually apologized to me a couple of times over the last several weeks--real apologies--not dripping with sorrow, but not "i'm sorry, but this is why you deserved it", either.   This is real progress for him!!

Thanks again for your suggestions!

What is happening with your wrist that has you concerned?  I had my surgeries done 6 weeks apart.  our orthoped did such a good job, you can't even tell i had surgery on my left wrist--the scar is right inside one of the normal folds.  On my right wrist you can see part of the tiny scar if you look for it, but it also has just a little adhesion that will pull down if you pull the skin to the side.

I think that any wrist pain and cramping that I get now and then is related to whatever is going on with me now and not with carpal tunnel.
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Avatar universal


You say " I think my hands are a lot weaker".

I do not think this is the best outcome from surgery. Have you seen a hand therapist who can show you exercises to improve your hand function?
  

You say: " i think that maybe i just NEED more out of the relationship than he does---does that make sense?"

Yes it makes PERFECT sense.   I am single and know some friends who entered marriage wanting the same things but over time developed different needs. THIS is common. As I am not a counselor I don't know how to deal with this. But it should be addressed.

You say "... I think it would be a start that could build into something more" Agreed. A start is good. ANY start is good.  

You say "I think we need to visit together, also, but I think my husband needs a little time by himself first, and to gain some trust in me again".

Perhaps, but you should set a time line by when certain things are accomplished such as when you're both attending counseling together and by when results from those counseling sessions are realized or begun to be realized.

You say "However, I think this person (let's call him the SOUNDING BOARD)  should also visit with me alone occasionally during the period of time he is visiting with my husband alone---he needs to hear both sides".  

Definitely! Meeting separately initially is a great idea.

You say "I should be able to wait a few minutes and take my turn to speak if I feel like he isn't telling things like they really are".

Tell me is this quick to jump and voice your opinion something new or have you always behaved this way?

You say " husband is depressed---but he really isn't doing anything to actively try and help it---he needs to take responsibility for that".

Without treatment I cannot see how anyone can triumph over depression. I have  48yo friend who is depressed over a guy who is not interested in her. She has been like this for 3 yrs. This has resulted in her gaining weight, losing friends and losing her job and STILL she doesn't get it! get help I shout to her, but I may as well talk to a brick wall!

You say "I think short regular visits with my husband and occasional visits with me could lead to us being able to meet together with this leader and friend."

Yes maybe, try for regular visits of yr husband and the Sounding Board"; of you and the hearing board and BOTH YOU AND HUSBAND and the Sounding Board.

Before visiting him, ideally prepare a list of issues (make 2 copies one for you and one for the SOUNDING Board) to talk about in advance of meeting him. The list should be divided along two lines:

Issues relating to me and my illness; and
Issues relating to me and my husband

The best that can happen is that you will leave a copy with the Sounding Board and he will raise those topics with yr husband when they meet.
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Avatar universal
I think I have gained all my wrist function, but I think my hands are a lot weaker.  i play the piano at church and seem to mess up--but i rarely play anymore--i think I am just out of practice.   My handwriting seems to be a little sloppier since the surgery.   I still occasionally get some hand cramping, too---i think it is probably weather related.

I think my husband is dedicated to staying in the marriage and i think he wants it to be better, too----i think that maybe i just NEED more out of the relationship than he does---does that make sense?   I need conversation and to be able to talk about problems---even if it isn't the most convenient time---but I also need to not hit him with things the moment he walks in the door.

Funny thing about the person I said I felt we could visit with.  We were talking about it the other day, and somehow it came up who he thought could help us--and he mentioned the very person I was thinking about---and the man has already volunteered to visit with my husband every couple of weeks for about 15 minutes.  i know that is not a lot of time, but I think it would be a start that could build into something more.  My husband really likes him and trusts him--and his wife and I have been friends for years.

I think we need to visit together, also, but I think my husband needs a little time by himself first, and to gain some trust in me again. However, I think this person should also visit with me alone occasionally during the period of time he is visiting with my husband alone---he needs to hear both sides.  

I did have a tendency to get really angry when we met together with people before, and he always felt "tattled" on.  He probably felt like he was being attacked----and in a way, I probably was attacking everything i felt like he had said and done wrong--it was easier to do it because there was another person there, and he wasn't going to start shouting obscenities at me or anything---so I have to take some of the blame for him not wanting to meet with someone at the same time as me.

Now that he has come clean with what he has done and said, there is nothing to hide---and I can see the importance of me not getting angry---and learning to take my turn to speak---instead of interrupting my husband while he is talking, because I feel he isn't telling things right.

I should be able to wait a few minutes and take my turn to speak if I feel like he isn't telling things like they really are.

I agree with you that people change---I certainly have.  I am not  able to do a lot of the things that I used to do---but I am taking  steps to try and get myself well.  i think my husband is depressed--he knows he is depressed---but he really isn't doing anything to actively try and help it---he needs to take responsibility for that.

I definitely agree that we need to meet together with this leader at some point.  This is what has really bothered me about the way things have been done so far.  Not just that we were not meeting with someone at the same time---but that the person meeting with my husband only visited with me twice, and then never visited with me again----and he has not even been consistent with visiting with my husband.

I think short regular visits with my husband and occasional visits with me could lead to us being able to meet together with this leader and friend.

i really appreciate your insight on all this.

Thanks.
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Avatar universal
Hi, sorry I was out of touch for a few days.

You mention a chap that is not a counselor but whose judgement you and your husband respect. That is good. By all means see him. But on a regular basis. There is no point seeing someone like that every month or every 6 weeks. You need continuous interaction, say weekly or fortnightly.

You keep saying you want to work through your issues with your husband.Is he as dedicated to resolving the problems as you are? It seems to me that you are doing ALL the heavy lifting regarding resolving the emotional issues in your marriage. You already confessed to taking the lead in sex. I wonder if you wouldnt be better off with a guy who was committed to you as you are to him (or the marriage?)

You say "I believe in my husband, and I have seen him at his best--i know what he is capable of".  You know what he WAS capable of. People change.

If you agree to your husband meeting someone then he MUST agree to have you there as well. There is NO point for him to be counseled n you absence as he could easily misstate the true relations of your marriage and then be recommended a path that is SO WRONG as it assumes he was telling the truth.

You are talking of your MARRIAGE. This is an enterprise involving more than your husband. Doesnt he "get" that? Your son's analogy is not a good one. Alcoholics have a problem that involves them and their liquor. BOTH are talked about in AA meetings. I am sure he talks about you when he discusses the marriage BUT if you are not there, how does anyone know if he is talking the truth or talking what he feels?

You say and I agree with
"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".

You mention "carpal tunnel". Do you feel you have regained all your wrist functions after surgery? Mine was a tumor and not carpal tunnel. The docs have no idea why I had it and are still investigating the relationship to the brain tumor.
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