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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!
Not sure if I made it clear that I have no diagnosis yet, only the cortisol tests and a prescription for hydrocortisone. I feel like I know nothing.
I am crabby and having abdominal pain, fogginess, and craving for salt and sugar. It's 1am and I'm tired, but grinding my teeth. I kind of wish I could take more hydrocortisone, because the pain always starts two hours after the last helped.
I did write 0.5, that's what AM and PM both came back as on 5/14. That was on 5mg of Prednisone from 5/1-5/7, so they redid the cortisol test after 9 days on hydrocortisone and 1 day off of it, just in case.
That second 8am serum cortisol test (5/31) came back at 2.7mcg, and I got to go back on the hydrocortisone after doing the test. (I thought I was going to die the night before after a few hours without the cortisone, that's why I went to urgent care.)
I have an appointment with my GP tomorrow but he doesn't know yet the endocrinologist canceled my appointment. GP already said he doesn't know what to do, so I guess tomorrow is about hoping there's another specialist in the area, or that someone else will help?
I've been feeling pretty sick. This lucid-ish moment brought to you by my 8am dose of hydrocortisone. Thank you!
That second 8am serum cortisol test (5/31) came back at 2.7mcg, and I got to go back on the hydrocortisone after doing the test. (I thought I was going to die the night before after a few hours without the cortisone, that's why I went to urgent care.)
I have an appointment with my GP tomorrow but he doesn't know yet the endocrinologist canceled my appointment. GP already said he doesn't know what to do, so I guess tomorrow is about hoping there's another specialist in the area, or that someone else will help?
I've been feeling pretty sick. This lucid-ish moment brought to you by my 8am dose of hydrocortisone. Thank you!
Er, I was on 5mg Prednisone for a respiratory thing for a week, then off it for a week, then cortisol test #1, then 9 days of hydrocortisone, 1 day without, and then cortisol test #2. Then endo saying to just stay on hydrocortisone but not come back.
Sorry, hard time organizing those thoughts.
Sorry, hard time organizing those thoughts.
The first tests (May 14) were done at 8am and 3pm, (0.5mcg both). The second (June 1) was just an AM and done around 8:30am, (2.7mcg). I've had lots of CBCs, my sodium and potassium are fine. My GP said he has no idea why they are so normal. (I can come back with specific levels/results later. The only other weird things were albumin/globulin ratios and eosinophil-something-something.)
Tomorrow I am going to ask my GP for another endocrinologist referral, I just hope I don't have to wait too long, because my life has been getting pretty hard to... live.
I've also had high and low temps, too slow/too fast GI problems, and oh god I'm like an idiot now. I guess I'll report back tomorrow with what GP says about other endos. Thanks for the input.
Tomorrow I am going to ask my GP for another endocrinologist referral, I just hope I don't have to wait too long, because my life has been getting pretty hard to... live.
I've also had high and low temps, too slow/too fast GI problems, and oh god I'm like an idiot now. I guess I'll report back tomorrow with what GP says about other endos. Thanks for the input.
A few points:
1. Follow Rumpled's advice, she helped me and she knows more on this matter than the rest of us combined. Her point on identifying just what type of issue you have: primary or secondary, is very important to establish.
2. You mention you had cortisol tests at 0830 and 300pm. It is better to have the second test closer to 6pm.
3. To get a more accurate reading you must be off the hydrocortisone for 2 days not one as you mention you did. And then do the AM and PM tests.
4. If your GP cannot refer you to an endo who knows what he is doing, then ask that GP to refer you to someone else, even if he/she is not convenient for you to get to. Many GP's have relationships with specialists in their area (the relationships may be either professional or personal). You however need ANSWERS to an intricate matter which means you will HAPPILY travel to see someone who knows the issue.
5. By the way, are you in Australia or the United Kingdom?
6. Are you drinking plenty of fluids? Easing off carbs and mostly eating protein?
1. Follow Rumpled's advice, she helped me and she knows more on this matter than the rest of us combined. Her point on identifying just what type of issue you have: primary or secondary, is very important to establish.
2. You mention you had cortisol tests at 0830 and 300pm. It is better to have the second test closer to 6pm.
3. To get a more accurate reading you must be off the hydrocortisone for 2 days not one as you mention you did. And then do the AM and PM tests.
4. If your GP cannot refer you to an endo who knows what he is doing, then ask that GP to refer you to someone else, even if he/she is not convenient for you to get to. Many GP's have relationships with specialists in their area (the relationships may be either professional or personal). You however need ANSWERS to an intricate matter which means you will HAPPILY travel to see someone who knows the issue.
5. By the way, are you in Australia or the United Kingdom?
6. Are you drinking plenty of fluids? Easing off carbs and mostly eating protein?
Thank you. I will work on this stuff.
The testing is a little difficult only because I'm limited to the lab's hours, so far as I know. I'm hoping/assuming that if I find a competent endo, this will be somehow more feasible.
Off the hydrocortisone for 2 days? Oh geez. Is there some kind of thing I'm supposed to do to.. feel like I'm going to be okay through that time? It was about 4 hours after the last dose before I knew something was pretty wrong. (BP, evidently?)
At the moment, I'm sort of learning to manage my symptoms for the 2 hours that I hate in between the 4-hour-spaced doses.. Again I'm hoping an actual doctor will answer these questions, when I get to see one.
I didn't get the impression that my GP has relationships with any endos in particular. He referred me to the guy who's supposed to be fanciest in the hospital-group of which he is a part. I've made a list of the other people my insurance says they cover, I'm hoping to figure out which is a decent one, and hopefully get an appointment soon..
Australia or the UK? USA, state of New Mexico.
I've *definitely* been drinking plenty of fluids. I hope I'm not drinking too many, I seem to be peeing constantly. I have not heard before about easing off of carbs or onto protein, I'll have to look it up later when I can read better.
Normally I'm pretty on top of my health stuff, but spending so much of my time so out-of-it and weak has really thrown me. I don't have this at ALL, and that endo dropped me like a hot potato for some reason I guess I shouldn't bother to figure out.
Thanks again. I'll write some of this down for GP tomorrow.
The testing is a little difficult only because I'm limited to the lab's hours, so far as I know. I'm hoping/assuming that if I find a competent endo, this will be somehow more feasible.
Off the hydrocortisone for 2 days? Oh geez. Is there some kind of thing I'm supposed to do to.. feel like I'm going to be okay through that time? It was about 4 hours after the last dose before I knew something was pretty wrong. (BP, evidently?)
At the moment, I'm sort of learning to manage my symptoms for the 2 hours that I hate in between the 4-hour-spaced doses.. Again I'm hoping an actual doctor will answer these questions, when I get to see one.
I didn't get the impression that my GP has relationships with any endos in particular. He referred me to the guy who's supposed to be fanciest in the hospital-group of which he is a part. I've made a list of the other people my insurance says they cover, I'm hoping to figure out which is a decent one, and hopefully get an appointment soon..
Australia or the UK? USA, state of New Mexico.
I've *definitely* been drinking plenty of fluids. I hope I'm not drinking too many, I seem to be peeing constantly. I have not heard before about easing off of carbs or onto protein, I'll have to look it up later when I can read better.
Normally I'm pretty on top of my health stuff, but spending so much of my time so out-of-it and weak has really thrown me. I don't have this at ALL, and that endo dropped me like a hot potato for some reason I guess I shouldn't bother to figure out.
Thanks again. I'll write some of this down for GP tomorrow.
Oh, and of course I'll happily travel anywhere the insurance-taxi-thing is willing to take me. I think they do anything within the state, but I'm not sure. I'll have to find out. I'm not worried about the convenience of someone close or anything, I just need to make sure I can find someone who accepts my insurance..
I would do testing only off HC for a minimum of 24 hours... the more you can push it is better.
If you feel the urge to drink and then pee and then feel like you still need to drink - that can signal a pituitary issue - a water diabetes called diabetes insipidus - so I would see either an endo if you can find someone intelligent, or sometimes a kidney doc can make that call and get you on DDAVP.
I know I have waited to get into the *extra good doctor* only to find out that they were clueless - but named a top doc in a magazine. One patted me and told me I was absolutely fine - needed no endo, no thyroid meds (half my thyroid was gone at the time, I was hypothyroid, had hashimoto's and two more nodules, but needed nothing???) and even *supposed* pituitary issues were just in my head... I was furious. I ended up traveling to California!
If you feel the urge to drink and then pee and then feel like you still need to drink - that can signal a pituitary issue - a water diabetes called diabetes insipidus - so I would see either an endo if you can find someone intelligent, or sometimes a kidney doc can make that call and get you on DDAVP.
I know I have waited to get into the *extra good doctor* only to find out that they were clueless - but named a top doc in a magazine. One patted me and told me I was absolutely fine - needed no endo, no thyroid meds (half my thyroid was gone at the time, I was hypothyroid, had hashimoto's and two more nodules, but needed nothing???) and even *supposed* pituitary issues were just in my head... I was furious. I ended up traveling to California!
Wow, a minimum of 24 hours? The endo's notes (seen on GP's screen) said that the stim test wasn't necessary, and he doubts he could get me to stop taking HC for "at least a month" in order to do it.
I saw my GP today. Endo's notes said adrenal insufficiency, stay on hydrocortisone, but that's all. Notes said that the remaining problems with headaches and abdominal pain are being caused by something else, and 3x/day HC should have me 100% normal if it was indeed the endo's concern. So by continuing to have symptoms while on HC, it left his jurisdiction?
I got a new referral and made an appointment with another endo, about a month from now. I'm on the cancellation list, so maybe that..
People keep mentioning travelling and making sure I get a good doctor, but I'm not sure if those options are available to me. I am on Medicaid, Supplemental Security Income, and I take the medi-taxi to my appointments, if that clarifies anything.
My GP said it sounded like my blood sugar might be doing crazy stuff, so he prescribed a blood glucose meter. I haven't picked it up yet, but I guess I'll start Googling what to DO with the thing..
Thanks again.
I saw my GP today. Endo's notes said adrenal insufficiency, stay on hydrocortisone, but that's all. Notes said that the remaining problems with headaches and abdominal pain are being caused by something else, and 3x/day HC should have me 100% normal if it was indeed the endo's concern. So by continuing to have symptoms while on HC, it left his jurisdiction?
I got a new referral and made an appointment with another endo, about a month from now. I'm on the cancellation list, so maybe that..
People keep mentioning travelling and making sure I get a good doctor, but I'm not sure if those options are available to me. I am on Medicaid, Supplemental Security Income, and I take the medi-taxi to my appointments, if that clarifies anything.
My GP said it sounded like my blood sugar might be doing crazy stuff, so he prescribed a blood glucose meter. I haven't picked it up yet, but I guess I'll start Googling what to DO with the thing..
Thanks again.
You mentioned "GP" rather than the usual "PCP' (Primary Care Physician) so I thought you were not in the US.
Ok so you're in NM. Anywhere near Albuquerque? Have you tried the endos at University Hospital? I understand it is the best hospital in the state and would surely have decent endos on board, at least no worse than who you've been seeing.
If you have not tried them and they are not on your insurer's list I urge you to call them and ask what it would cost to see them.
Does your insurer allow you to see doctors say in California? If so then make a beeline for UCLA (Ronald Reagan Medical Center) in Los Angeles or UCSF Medical Center in San Francisco. Both have well regarded endo facilities.
The sooner you are under the care of someone competent, the sooner you'll get better. I should know. I spent a year with an idiot until most of what he said contradicted what I read in 2 medical texts and what he mostly recommended made me feel worse.
Until I found someone better.
One more thing. Just to hammer the point of being off the Hydrocortisonew for 2 days or so. Yes being off it makes you feel worse. I know. I have been there. BUT, testing you without being off it for say 2 days WILL give a false reading. The reading will measure your levels INCLUSIVE of the supplements you took and will WRONGLY show a better result than is the truth.
Ok so you're in NM. Anywhere near Albuquerque? Have you tried the endos at University Hospital? I understand it is the best hospital in the state and would surely have decent endos on board, at least no worse than who you've been seeing.
If you have not tried them and they are not on your insurer's list I urge you to call them and ask what it would cost to see them.
Does your insurer allow you to see doctors say in California? If so then make a beeline for UCLA (Ronald Reagan Medical Center) in Los Angeles or UCSF Medical Center in San Francisco. Both have well regarded endo facilities.
The sooner you are under the care of someone competent, the sooner you'll get better. I should know. I spent a year with an idiot until most of what he said contradicted what I read in 2 medical texts and what he mostly recommended made me feel worse.
Until I found someone better.
One more thing. Just to hammer the point of being off the Hydrocortisonew for 2 days or so. Yes being off it makes you feel worse. I know. I have been there. BUT, testing you without being off it for say 2 days WILL give a false reading. The reading will measure your levels INCLUSIVE of the supplements you took and will WRONGLY show a better result than is the truth.
The stim test is THE test - so that endo is an endummy. It will be tough to find a good doc - but do keep trying. I agree with Low - the longer you are off for testing the better - in fact, most good docs will do testing then treat - imagine!
Hydrocortisone is not a medication one gives and just walks away from - so you need monitoring. The symptoms always stay - it is a permanent condition!
Good luck with the glucometer - the forum here may help as well.
Hydrocortisone is not a medication one gives and just walks away from - so you need monitoring. The symptoms always stay - it is a permanent condition!
Good luck with the glucometer - the forum here may help as well.
I'm hoping the next endo will answer this a month from now, but in case the somehow isn't amenable to questions either..
"Yes being off it [HC] makes you feel worse. I know. I have been there. BUT, testing you without being off it for say 2 days WILL give a false reading."
How do you cope with the symptoms from being off HC it for that long? If it was like last time, I'd have to stay in bed after the 5 hour mark, but I also don't know how to fix which symptoms with what yet. (I'm still figuring out which is BP or blood sugar or what.)
Previous endo did say stim test could only be done if I was off HC "at least a month or two", I really hope this next guy says only 2 days.
"Yes being off it [HC] makes you feel worse. I know. I have been there. BUT, testing you without being off it for say 2 days WILL give a false reading."
How do you cope with the symptoms from being off HC it for that long? If it was like last time, I'd have to stay in bed after the 5 hour mark, but I also don't know how to fix which symptoms with what yet. (I'm still figuring out which is BP or blood sugar or what.)
Previous endo did say stim test could only be done if I was off HC "at least a month or two", I really hope this next guy says only 2 days.
You ask how I coped with stopping the hydrocortisone prior to a test. Let me tell you it wasn't easy. The first time I just stopped the meds which I took in one go once a day. A few months later (prior to the follow up test) I started taking the same amount of meds but in smaller dose more times a day. For instance say I was on 40mg a day, at first I took it all or most of it in the morning and then had 2 days without them before the test. But when I swapped to taking 20mg in the morning then 15mg at say 2pm then 5 mg at 5pm my body was more tolerant of the withdraw over the two days when it came to withdraw. I am not saying it was a walk in the park BUT certainly I felt better than I did after the first test. I checked with my neurosurgeon about this and he replied (and this was confirmed by many experts) that if a dose is say 40mg (or whatever) a day then breaking it up into more manageable lots - which in my case helped me cope with the adrenal insufficiency better - is certainly ok. The key is to maintain the total daily dose as asvised by the endo.
Also there is no need for many tests.
If you do a test correctly i.e. after 2 days of no meds, then WHATEVER your result, the next test should be say 3 mths away. If you're still in need of hydrocortisone then 3 months later is a good time to check your levels. If by some miracle your levels are ok at the next test then still 3 mths down the track is a good time to recheck the cortisol.
Also there is no need for many tests.
If you do a test correctly i.e. after 2 days of no meds, then WHATEVER your result, the next test should be say 3 mths away. If you're still in need of hydrocortisone then 3 months later is a good time to check your levels. If by some miracle your levels are ok at the next test then still 3 mths down the track is a good time to recheck the cortisol.
My appointment with the new endo got moved to tomorrow! I have all the test results I could gather, but they're mixed in with the bizarrely inaccurate notes the last endo wrote. Should I even give ANY of them to him?
Does anyone have any advice for the best way to approach the new endo about 22 hours from now? I don't want to walk in there saying "the last guy wouldn't treat me, I'm not sure why", and then hand him these records that are 25% "wait, why does it say this?"
My main question now: When he asks me what the problem is, how many months back should I go? When they diagnosed me with fibromyalgia 18 months ago? When I got really thirsty and confused 4 months ago? Should I just start with the low cortisol test results 1 month ago and leave out the last 2 years of being sick?
Thanks again.
Does anyone have any advice for the best way to approach the new endo about 22 hours from now? I don't want to walk in there saying "the last guy wouldn't treat me, I'm not sure why", and then hand him these records that are 25% "wait, why does it say this?"
My main question now: When he asks me what the problem is, how many months back should I go? When they diagnosed me with fibromyalgia 18 months ago? When I got really thirsty and confused 4 months ago? Should I just start with the low cortisol test results 1 month ago and leave out the last 2 years of being sick?
Thanks again.
I suggest the following when you see the endo.
Say nothing initially. Hand him one sheet of paper with your DETAILED history, such as:
****Date / Symptoms / Diagnosis / Treatment recommended****
For each and every DATE please list SYMPTOMS, DIAGNOSIS (if available), Treatment and HOW THE TREATMENT MADE YOU FEEL
For example:
Jan 2011 I exhibited the following symptoms (list them) and was diagnosed with fibromyalgia. Treatment recommended was......
June 2011 felt exhausted daily at 5pm (and this continues to this day)
Then list other times when you felt bad
Feb 2012 got very thirsty
March 2012 started to lose concentration and become very forgetful
Give him time to read and digest what you wrote.
On another piece of paper write that you want to check your hormones and other functions. It would be beneficial to have the following measured. They include hormones, vitamins, cholesterol etc:
LFT/UEC/UA/Ca(COR)/Cortisol
Vitamin B1, B6, B12, D
Chol/Trigs/HDL/LDL
TSH, FT4 (thyroid)
LH (Lutenising hormone)
TES (Testosterone)
ANE (Androstenedione, serum)
Renin
If he asks say that you were very unhappy with the former endo and hear good things about him/her (the one you are now seeing)
With respect to the blood work, ask if you have to fast before you give blood. Also make sure you're OFF the hydrocortisone for 48 hrs at least before checking for cortisol.
Good luck.
Say nothing initially. Hand him one sheet of paper with your DETAILED history, such as:
****Date / Symptoms / Diagnosis / Treatment recommended****
For each and every DATE please list SYMPTOMS, DIAGNOSIS (if available), Treatment and HOW THE TREATMENT MADE YOU FEEL
For example:
Jan 2011 I exhibited the following symptoms (list them) and was diagnosed with fibromyalgia. Treatment recommended was......
June 2011 felt exhausted daily at 5pm (and this continues to this day)
Then list other times when you felt bad
Feb 2012 got very thirsty
March 2012 started to lose concentration and become very forgetful
Give him time to read and digest what you wrote.
On another piece of paper write that you want to check your hormones and other functions. It would be beneficial to have the following measured. They include hormones, vitamins, cholesterol etc:
LFT/UEC/UA/Ca(COR)/Cortisol
Vitamin B1, B6, B12, D
Chol/Trigs/HDL/LDL
TSH, FT4 (thyroid)
LH (Lutenising hormone)
TES (Testosterone)
ANE (Androstenedione, serum)
Renin
If he asks say that you were very unhappy with the former endo and hear good things about him/her (the one you are now seeing)
With respect to the blood work, ask if you have to fast before you give blood. Also make sure you're OFF the hydrocortisone for 48 hrs at least before checking for cortisol.
Good luck.
LowCortisol, thanks very much for the prompt advice. I found the structured layout ideas helpful. I did my best, I think it went all right. So-so. He did say the stim test was appropriate, but the only way for me to get it is to receive a new referral to a third endocrinologist, this time at the university hospital. He said they may or may not agree that it's necessary, but it's the only game in town with the whole chilled tubes thing.
I hope to get this new appointment pretty quickly, since the longer I'm on HC the harder it will be to come off. Today's endo seemed to think I should come off cold turkey and spend "as long as possible" ... "[in bed] if you have to" before the stim test. I'm thinking it might be wisest to wait and see what new endo will say? I did mention that my bp dropped enough to hit urgent care the last time I was off HC for 5 hours, he seemed okay with that.
I asked him if there were any tests we could do to rule out autoimmune involvement, since I've a 10+ year history of opportunistic infections: viral, bacterial, fungal. Respiratory, systemic, GI, UTI, etc. He said autoimmune things seemed unlikely. I tried to get a good answer out of this one, I said, "what is it that makes you say that's something we can rule out?" He said, "You would be having more problems. You would be sicker."
I'm not sure what that means, or if I was being unreasonable. He seemed to focus on the thrush thing and my inhaled steroid use (Advair for asthma). He said those can cause thrush (as I know, I do rinse), and seemed content to have put my question to rest.
Did I do this wrong? Do I have reason to suspect immune stuff? We've had to treat me like a mildly immuno-compromised person since I had pneumonia in 1997. I've had multiple doctors ask if I've been tested for HIV. ("You shouldn't have a virus for this long.")
LowCortisol did list all of those tests, but I didn't have the guts to bring that list in. I had a hard time explaining to the first endo why I wanted the stim test done, I guess I'm easily shot down..
Thanks again.
I hope to get this new appointment pretty quickly, since the longer I'm on HC the harder it will be to come off. Today's endo seemed to think I should come off cold turkey and spend "as long as possible" ... "[in bed] if you have to" before the stim test. I'm thinking it might be wisest to wait and see what new endo will say? I did mention that my bp dropped enough to hit urgent care the last time I was off HC for 5 hours, he seemed okay with that.
I asked him if there were any tests we could do to rule out autoimmune involvement, since I've a 10+ year history of opportunistic infections: viral, bacterial, fungal. Respiratory, systemic, GI, UTI, etc. He said autoimmune things seemed unlikely. I tried to get a good answer out of this one, I said, "what is it that makes you say that's something we can rule out?" He said, "You would be having more problems. You would be sicker."
I'm not sure what that means, or if I was being unreasonable. He seemed to focus on the thrush thing and my inhaled steroid use (Advair for asthma). He said those can cause thrush (as I know, I do rinse), and seemed content to have put my question to rest.
Did I do this wrong? Do I have reason to suspect immune stuff? We've had to treat me like a mildly immuno-compromised person since I had pneumonia in 1997. I've had multiple doctors ask if I've been tested for HIV. ("You shouldn't have a virus for this long.")
LowCortisol did list all of those tests, but I didn't have the guts to bring that list in. I had a hard time explaining to the first endo why I wanted the stim test done, I guess I'm easily shot down..
Thanks again.
Hi again,
Ok you didn't give the endo the whole list of items I asked you to check. No problem. After you do the next round of tests you can then do some or all of the ones I mentioned.
As to your query on autoimmune diseases, I cannot answer that. Perhaps rumpled can.
But you did mention HIV. I wonder....are you sexually active with partners that are not that well known to you? I ask because there are viruses that can impact the central nervous system and peripheral nervous system and may have no visual sign on your body like a sore or scab. If you have had many sexual partners it cannot hurt to test for STDs.
As to withdrawing from the HC, you mention the doctor said to come off it cold turkey. His advice MAYBE correct if you were on HC for a VERY short time, say a couple of weeks AND the daily dose was low.
Many doctors say that if you've been taking more than 30 mg per day (I say 20 mg) for say 3 weeks or more then you should NOT stop taking HC suddenly, unless your doctor gives you a very good reason. The body becomes dependent on the medicine and stopping it suddenly WILL result in feeling very bad.
I should know. An idiot endo told me to do just that. I was on HC for 18 mths and he wanted me to stop from 20 mg a day (which I tapered down to from 30 mg 2 weeks earlier, I was on 60 mg before that).
I have NEVER felt so bad as I did when I stopped cold turkey. I staggered to my doctor's office and told her that I returned to the HC after 3 days of going cold turkey. She agreed with me that the endo was wrong and I found a new (wonderful) endo.
If your treatment is to be stopped the dose should be tapered down gradually How much are you on daily?
You should understand that HC takes over the adrenal glands' production of a steroid called cortisol in your body and you must slowly allow the adrenal glands the chance to start working, gradually.
One last thing. If you taper off over say 2 months and at any time feel ill eg catch cold, have diahorea etc then STOP tapering until you get over that new illness. This is because when your body is under stress eg new infections it needs to manufacture cortisol. If your body doesn't do that but relies on HC tablets then by tapering you are denying the body what it needs to heal itself. AND if you have say a cold which doesn't get better SOON then by all means advise the endo.
Ok you didn't give the endo the whole list of items I asked you to check. No problem. After you do the next round of tests you can then do some or all of the ones I mentioned.
As to your query on autoimmune diseases, I cannot answer that. Perhaps rumpled can.
But you did mention HIV. I wonder....are you sexually active with partners that are not that well known to you? I ask because there are viruses that can impact the central nervous system and peripheral nervous system and may have no visual sign on your body like a sore or scab. If you have had many sexual partners it cannot hurt to test for STDs.
As to withdrawing from the HC, you mention the doctor said to come off it cold turkey. His advice MAYBE correct if you were on HC for a VERY short time, say a couple of weeks AND the daily dose was low.
Many doctors say that if you've been taking more than 30 mg per day (I say 20 mg) for say 3 weeks or more then you should NOT stop taking HC suddenly, unless your doctor gives you a very good reason. The body becomes dependent on the medicine and stopping it suddenly WILL result in feeling very bad.
I should know. An idiot endo told me to do just that. I was on HC for 18 mths and he wanted me to stop from 20 mg a day (which I tapered down to from 30 mg 2 weeks earlier, I was on 60 mg before that).
I have NEVER felt so bad as I did when I stopped cold turkey. I staggered to my doctor's office and told her that I returned to the HC after 3 days of going cold turkey. She agreed with me that the endo was wrong and I found a new (wonderful) endo.
If your treatment is to be stopped the dose should be tapered down gradually How much are you on daily?
You should understand that HC takes over the adrenal glands' production of a steroid called cortisol in your body and you must slowly allow the adrenal glands the chance to start working, gradually.
One last thing. If you taper off over say 2 months and at any time feel ill eg catch cold, have diahorea etc then STOP tapering until you get over that new illness. This is because when your body is under stress eg new infections it needs to manufacture cortisol. If your body doesn't do that but relies on HC tablets then by tapering you are denying the body what it needs to heal itself. AND if you have say a cold which doesn't get better SOON then by all means advise the endo.
I had the same experience re HIV - the docs kept making me test (4 times!) which was negative and I don't have the history to suggest it but they kept thinking I was lying, of course... *sigh* - and finally sent me to an AIDS doc! who laughed and said his AIDS patients are better off than I was. He did some auto-immune testing but nothing really was definitive enough so he was baffled. It literally took me over a year to heal a small wound (I am not a diabetic) with help. It was miserable. Long story long - he he - cortisol tanks the immune system.
So don't feel so bad - it is a crazy thing when cortisol goes out of wack.
Do listen re stress dosing - there is real danger in tapering off. Fluids and salt helps.
So don't feel so bad - it is a crazy thing when cortisol goes out of wack.
Do listen re stress dosing - there is real danger in tapering off. Fluids and salt helps.
As your immune system is weak and clearly after 4 tests you don't seem to have HIV.
There must be a clinical reason for your weakened immune system that has not been identified so far.
I am not a doctor but even I can only a few reasons for a weakened immune system (other than cortisol and diabetes issues): Kidney disease, Hepatitis C and maybe a very simple virus that mostly has no affect on people but can be bad news for those with weakened immune systems. It is called cytomegalorirus (see http://www.centrahealth.com/health-library/c/413-cytomegalovirus)
Look into those, have them tested.
Just to be sure, I would run the following tests:
Herpes Simplex Virus 1
Herpes Simplex Virus 2
chlamydia
syphillis
While they may not cause the immune system to be weakened they will add to your diagnosis.
There must be a clinical reason for your weakened immune system that has not been identified so far.
I am not a doctor but even I can only a few reasons for a weakened immune system (other than cortisol and diabetes issues): Kidney disease, Hepatitis C and maybe a very simple virus that mostly has no affect on people but can be bad news for those with weakened immune systems. It is called cytomegalorirus (see http://www.centrahealth.com/health-library/c/413-cytomegalovirus)
Look into those, have them tested.
Just to be sure, I would run the following tests:
Herpes Simplex Virus 1
Herpes Simplex Virus 2
chlamydia
syphillis
While they may not cause the immune system to be weakened they will add to your diagnosis.
Rumpled - Wow that's odd! I replied to what was listed as unbekant's posting. After I posted mine I noticed it was your REPLY to unbekant.
Sorry about that.
Sorry about that.
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Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
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.