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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!
Has the doctor told when when you're to reduce from 10,000 IU? I ask because you're now at 47. The minimum for "sufficient" Vit D is 51.
If I were in your shoes I would stay on 10,000IU for maybe a month and then lower the does to 5,000IU for a while.
You mention you're VERY sensitive to what you hear. As I had low cortisol but no other issues (like anxiety) it is my opinion that the sensitivity you mention relates to your anxiety and the medications you take for that.
When my cortisol was very low I would be sensitive to EVENTS not people. For instance a small noise (say someone pushing a chair) would rattle me where it would not affect most people.
Have you been checked for asperger's r similar? A friend of mine was diagnosed with that and is VERY sensitive to what is said AND takes everything literally
If I were in your shoes I would stay on 10,000IU for maybe a month and then lower the does to 5,000IU for a while.
You mention you're VERY sensitive to what you hear. As I had low cortisol but no other issues (like anxiety) it is my opinion that the sensitivity you mention relates to your anxiety and the medications you take for that.
When my cortisol was very low I would be sensitive to EVENTS not people. For instance a small noise (say someone pushing a chair) would rattle me where it would not affect most people.
Have you been checked for asperger's r similar? A friend of mine was diagnosed with that and is VERY sensitive to what is said AND takes everything literally
I am taking 10,000 IU/day of Vit D. My level was so low that my bones were hurting--but since i was "within the lab range", no one picked up that it might be the cause of my bone pain.
By the time my new doc tested my vut D it was up to 47 (from 33) He is having me continue the 10,000 IU/daily.
I take clonazepam to keep my anxiety under control--it seems to help me quite a bit---but More often than not I am still on an emotional roller coaster.
I could hardly keep my eyes open for most of the day yesterday---but I had a horrible time sleeping---took forever to fall asleep and then ikept waking up all night long.
The doc is havingme take all of my thyroid in the morning---i am wondering if i should take 1 grain in the morning and then take the othe grain later in the day. I have seen recommendations to do it both ways.
I am extremely sensitive to what people say--my feelings seem to get hurt far too easily---even when nothing unkind was intended. This is making me wonder if maybe i need to ask the doctor about raising my cortisol level a little bit.
I'm havinbg a hard time getting down what I want to say. I actually think I am more tired and sleeping worse since my thyroid medication was raised. I would expect that an increase in the medication would make me feel better.
By the time my new doc tested my vut D it was up to 47 (from 33) He is having me continue the 10,000 IU/daily.
I take clonazepam to keep my anxiety under control--it seems to help me quite a bit---but More often than not I am still on an emotional roller coaster.
I could hardly keep my eyes open for most of the day yesterday---but I had a horrible time sleeping---took forever to fall asleep and then ikept waking up all night long.
The doc is havingme take all of my thyroid in the morning---i am wondering if i should take 1 grain in the morning and then take the othe grain later in the day. I have seen recommendations to do it both ways.
I am extremely sensitive to what people say--my feelings seem to get hurt far too easily---even when nothing unkind was intended. This is making me wonder if maybe i need to ask the doctor about raising my cortisol level a little bit.
I'm havinbg a hard time getting down what I want to say. I actually think I am more tired and sleeping worse since my thyroid medication was raised. I would expect that an increase in the medication would make me feel better.
Weird - I usually associate the anxiety/panic etc issues with high cortisol... my buds with that run through the gamut of diagnosis from depression to bi-polar and some, sadly not all, reduce significantly with treatment.
Totally agree on the vitamin D - that stuff is like a miracle!
Totally agree on the vitamin D - that stuff is like a miracle!
Oh, Klonopin isn't new to me at all. None of the benzos are, sadly. I've been on and off of benzodiazepines for over a decade. We just raised mine like crazy because I've been having a lot of anxiety and panic. I sure do keep posting these at 3am...
You say your psychiatrist put you on a new drug, Klonopin. I assume it is to control the anxiety. If that is so then give it a go. If it works then you can explore the HC situation properly.
A key part of any medical investigation is to focus on one issue (e.g your cortisol production) while keeping other issues under control. So if the Klonopin actually helps, then any investigation into the cortisol production will be able to make allowances (from any expected impact from Klonopin) in your treatment plan.
The last thing you want is to jump from one anxiety med to another as they will only muddle or delay any adrenal diagnosis.
A key part of any medical investigation is to focus on one issue (e.g your cortisol production) while keeping other issues under control. So if the Klonopin actually helps, then any investigation into the cortisol production will be able to make allowances (from any expected impact from Klonopin) in your treatment plan.
The last thing you want is to jump from one anxiety med to another as they will only muddle or delay any adrenal diagnosis.
By all means keep a journal because some days are better than others and it is wise to try and establish why this occurs. Are you taking Vit D? I was disgnosed with low Vit D and was placed on 5,000 IU/day which is 5x the normal dose. After 30 days I was taken down to 2,000 IU per day. After the 1st month I felt better, really better.
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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.