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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!
Just to clarify, when I talked of snapping at people and ACTING (or speaking) before thinking things through (which you too exhibit) don't worry. When you'll get off the HC, you will return to your old self and you'll be more tuned into yourself so that you'll rarely snap at people of act without thinking.It is one year since I stopped HC and am functioning far better (cognitively speaking).
I cannot help you regarding her rate or thyroid issues. Perhaps rumpled can.
One more thing, which may help you when receiving blood test results.
I saw what was thought to be a highly regarded endo who looked at my blood test results and said "the key issues are all within the normal range' so you're ok".
I followed his instructions, stopped the HC and felt very bad.
I soon looked for an endo with more experience.
I then found a great endo who explained as follows" first, if one is near the top or the bottom of the normal range then in my eyes that person is UNWELL. Especially if 2 or more tests confirm such borderline results. Critical of course if to see blood tests results in the context of the patient's history and other current symptoms"
Bottom line: you want a great endo and not an ortho to interpret your results.
Regarding your sex life, if it is not what it was, then the reason can be either physiological or pyschological. In many people their sex hormone tests are normal but, as was the case with me - a guy but it shouldn't differ for women - the stress (no pun intended) of AI coupled with poorly interpreted medical results threw my libido out the window while my testosterone levels were smack bang in the middle of the normal range.
The sex drive returned soon after I finished the HC to the level it was pre HC
I cannot help you regarding her rate or thyroid issues. Perhaps rumpled can.
One more thing, which may help you when receiving blood test results.
I saw what was thought to be a highly regarded endo who looked at my blood test results and said "the key issues are all within the normal range' so you're ok".
I followed his instructions, stopped the HC and felt very bad.
I soon looked for an endo with more experience.
I then found a great endo who explained as follows" first, if one is near the top or the bottom of the normal range then in my eyes that person is UNWELL. Especially if 2 or more tests confirm such borderline results. Critical of course if to see blood tests results in the context of the patient's history and other current symptoms"
Bottom line: you want a great endo and not an ortho to interpret your results.
Regarding your sex life, if it is not what it was, then the reason can be either physiological or pyschological. In many people their sex hormone tests are normal but, as was the case with me - a guy but it shouldn't differ for women - the stress (no pun intended) of AI coupled with poorly interpreted medical results threw my libido out the window while my testosterone levels were smack bang in the middle of the normal range.
The sex drive returned soon after I finished the HC to the level it was pre HC
When my BP is low or heart rate is high, I go for salt. Salt tabs, tomato juice etc. I only stress dose for illness etc. Low BP can be a signal for a crisis - so I may need to do both - but I have to see if it is ONLY heart rate, or other things going on - and go from there.
I said the weepy thing as I don't know how to get away from it - I know other people in our shoes that struggle with it too - so I just think it is hormones. Gender - not sure.
As for knowing the right dosage - I know as I don't have a crisis every week, I can do a reasonable amount of activity and I don't get sick all the time.
I said the weepy thing as I don't know how to get away from it - I know other people in our shoes that struggle with it too - so I just think it is hormones. Gender - not sure.
As for knowing the right dosage - I know as I don't have a crisis every week, I can do a reasonable amount of activity and I don't get sick all the time.
I was reading back over these posts and you mentioned something about the heart pounding for a long period of time and stress dosing because we can't raise our blood pressure--can you elaborate?
I have also read that low cortisol can cause shakiness---I know hyperhtyroid can cause it, too. I was getting times when my heart was pounding and i have never gotten over the shakes since I tried the last antidepressant I wil ever take. I think they were dropping my cortisol meds when this was going on.
I am wondering if it was the lower level of cortisol that was causing those symptoms and I was blaming it on the thyroid medication. I had lowered my thyroid dosage to an amount that would be sufficient for about a 3-4 year old child.
How do you know when you are on the right dosage and what is the best schedule to be taking it? I don't know what I should be expecting to feel. My original endo told me that as soon as i took my first HC pill I would probably start feeling better---but I never felt better the whole time she was treating me---but she never had me on an adequate dose of thyroid.
Rumpled, when you said we will always be weepy--are you meaning because we are women, because we are nearing or past menopaus, or because people with cortisol issues are going to just always be that way because it is hard to regulate something artificially that our body should be regulating on it's own?
I read an article about the long acting cortisol that you mentioned--I'd sure like to get my hands on that!!
I have also read that low cortisol can cause shakiness---I know hyperhtyroid can cause it, too. I was getting times when my heart was pounding and i have never gotten over the shakes since I tried the last antidepressant I wil ever take. I think they were dropping my cortisol meds when this was going on.
I am wondering if it was the lower level of cortisol that was causing those symptoms and I was blaming it on the thyroid medication. I had lowered my thyroid dosage to an amount that would be sufficient for about a 3-4 year old child.
How do you know when you are on the right dosage and what is the best schedule to be taking it? I don't know what I should be expecting to feel. My original endo told me that as soon as i took my first HC pill I would probably start feeling better---but I never felt better the whole time she was treating me---but she never had me on an adequate dose of thyroid.
Rumpled, when you said we will always be weepy--are you meaning because we are women, because we are nearing or past menopaus, or because people with cortisol issues are going to just always be that way because it is hard to regulate something artificially that our body should be regulating on it's own?
I read an article about the long acting cortisol that you mentioned--I'd sure like to get my hands on that!!
your comment definitely gives me a little more hope.
When all this got started it was because I needed carpal tunnel surgery and the orthoped wanted to make sure that low thyroid or low B 12 were not causing it.
My thyroid was at the low end of normal, and he felt like it was too low---but no one noticed that my TSH was also at the low end of normal--in fact, they were the exact same number! I don't blame them for not suspecting a pituitary problem--I'm just glad he felt the thyroid was too low even though it was in the "normal" range.
I needed the carpal tunnel surgery regardless, both hands had scar tissue inside them---but testing my thyroid at least got me started with an endo.
Fast forward past two bad endos' to the doc I am seeing now. My cortisol blood work was iffy----blood serum was high, 24 hour urine was a little low. After I finally saw him, and he had physically examined me, he felt that my symptoms pointed to low cortisol.
I was given istructions, that as my natural thyroid was raised, I was to watch for fatigue, tiredness, irritability, etc.----especiallly in the afternoon. He said that as my metabolism was raised by the increased thyroid, that it would also raise the cortisol, but that the rising cortisol might not be ble to keep up with the rising metabolism. he said i might need to raise my cortisol level.
That was a long explaination to say that I think my cortisol needs to be raised. I did not feel any different after starting on 1 grain of natural thyroid, but within the first week of raising to 2 grains, i started to feel worse and have been getting the symptoms he described.------I'm glad you mentioned the part about snapping at people and ACTING (or speaking) before thinking things through--I seem to do this way too often.
I cannot talk to the doc until Monday, but he sent me an email and told me to make sure I knew my basil temp and my resting heart rate. The last two mornings my temp has been about 96.2---I'm not quite sure how to get my resting heart rate measured right--it is hard to feel every beat and count them right---is there a trick to it?
Now, if I can only figure out when to get my sex hormones tested, and get my DHEA levels raised back up to a normal level---maybe I'll get my sex life back---tell me there's some hope there!!
When all this got started it was because I needed carpal tunnel surgery and the orthoped wanted to make sure that low thyroid or low B 12 were not causing it.
My thyroid was at the low end of normal, and he felt like it was too low---but no one noticed that my TSH was also at the low end of normal--in fact, they were the exact same number! I don't blame them for not suspecting a pituitary problem--I'm just glad he felt the thyroid was too low even though it was in the "normal" range.
I needed the carpal tunnel surgery regardless, both hands had scar tissue inside them---but testing my thyroid at least got me started with an endo.
Fast forward past two bad endos' to the doc I am seeing now. My cortisol blood work was iffy----blood serum was high, 24 hour urine was a little low. After I finally saw him, and he had physically examined me, he felt that my symptoms pointed to low cortisol.
I was given istructions, that as my natural thyroid was raised, I was to watch for fatigue, tiredness, irritability, etc.----especiallly in the afternoon. He said that as my metabolism was raised by the increased thyroid, that it would also raise the cortisol, but that the rising cortisol might not be ble to keep up with the rising metabolism. he said i might need to raise my cortisol level.
That was a long explaination to say that I think my cortisol needs to be raised. I did not feel any different after starting on 1 grain of natural thyroid, but within the first week of raising to 2 grains, i started to feel worse and have been getting the symptoms he described.------I'm glad you mentioned the part about snapping at people and ACTING (or speaking) before thinking things through--I seem to do this way too often.
I cannot talk to the doc until Monday, but he sent me an email and told me to make sure I knew my basil temp and my resting heart rate. The last two mornings my temp has been about 96.2---I'm not quite sure how to get my resting heart rate measured right--it is hard to feel every beat and count them right---is there a trick to it?
Now, if I can only figure out when to get my sex hormones tested, and get my DHEA levels raised back up to a normal level---maybe I'll get my sex life back---tell me there's some hope there!!
Blood work every 3 months is ideal.
Now that you have elaborated on what bothers you, I see a strong similarity with my (former) condition when I had low cortisol and was NOT adequately medicated: you snap at people quickly or you ACT before thinking through the situation.
If that is correct then you're possibly taking insufficient HC supplements as (relatively) small things like that set you off and with the right doses those things would not set you off.
Now that you have elaborated on what bothers you, I see a strong similarity with my (former) condition when I had low cortisol and was NOT adequately medicated: you snap at people quickly or you ACT before thinking through the situation.
If that is correct then you're possibly taking insufficient HC supplements as (relatively) small things like that set you off and with the right doses those things would not set you off.
The doc intends on doing blood work every 3 months to check where my levels are.
When I am not dealing with so much anxiety and depression i am not nearly as sensitive to things. When I was going through a really good period, my hubby and I could have a disagreement and i could forget about it pretty quickly--it was so much easier to let things roll off my back.
Actually, when I was referring to being bothered by what people say, it had to do with a mistake that was made by someone else and they kind of tried to shift the blame back on me and hint that I was expecting special treatment for my daughter and that I should have checked on something a couple of weeks before. This is an issue they have known about and been dealing with for 5 years. I had assumed everything was taken care of, but it wasn't, and I didn't get told until the very last minute---they just screwed up this time and didn't seem to want to admit it. But, that is another story.
When I am not dealing with so much anxiety and depression i am not nearly as sensitive to things. When I was going through a really good period, my hubby and I could have a disagreement and i could forget about it pretty quickly--it was so much easier to let things roll off my back.
Actually, when I was referring to being bothered by what people say, it had to do with a mistake that was made by someone else and they kind of tried to shift the blame back on me and hint that I was expecting special treatment for my daughter and that I should have checked on something a couple of weeks before. This is an issue they have known about and been dealing with for 5 years. I had assumed everything was taken care of, but it wasn't, and I didn't get told until the very last minute---they just screwed up this time and didn't seem to want to admit it. But, that is another story.
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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.