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Atrophy of adrenals from low doses of hydrocortisone??
Does anyone know of any real world experiences of physiological doses of hydrocortisone or physiological doses of Prednisone? I am wondering if there is any reasonable grounds for doctors to not prescribe or if it's an ' urban legend scenario '. I also posted this elsewhere on the interwebs so if you come across it don't be shocked.
I'm not talking about medical pharmacological doses like you might get as an inpatient sleeping overnight in the hospital. More like a physiological dose of up to about 25 milligrams HC, or about the equivalent in Prednisone.
If you know several people who take it but don't know of any atrophy cases, feel free to say that, too... I really want to know what's going on with this prescription..
Thanks!!!
I'm not talking about medical pharmacological doses like you might get as an inpatient sleeping overnight in the hospital. More like a physiological dose of up to about 25 milligrams HC, or about the equivalent in Prednisone.
If you know several people who take it but don't know of any atrophy cases, feel free to say that, too... I really want to know what's going on with this prescription..
Thanks!!!
I don't know what you mean by long term but for the record, I was on HC for 18 mths ranging from 2 mg to 60 mg per day say on average 20 mg. And while for a year afterwards I travelled everywhere with the tablets on me " just in case", I have not needed to return to them and from a hormonal point of view I am AOK.
I now have other problems but am told they are not related to hormones or my pituitary tumour which was removed.
I now have other problems but am told they are not related to hormones or my pituitary tumour which was removed.
No matter how you take it, in what form be it pills, inhalers or other - it can do damage long term. But people's tolerance vary and some go for AI, some will go Cushing's.
does taking prednisone or hydrocortisone damage the adrenals or do other damage long term? I feel better taking hydrocortisone suppositories for hemmarhoids.
Sorry you had to go through that!!
There seems to be no rhyme or reason to the dosing - one doc casually gives out 50 mg of prednisone for skin rashes and down the same street another doc is denying an addison's patient needs 5 mg to avoid a crisis and dying.....weird!
I did some quick legal research. There are no jury verdicts to speak of for low dose steroids for maintenance of adrenal insufficiency. But there are some for wacky HIGH DOSE uses for allergies and overdosing without any informed consent. And some for FAILING to give it to folks who were dying in the hospital, like you experienced.
There seems to be no rhyme or reason to the dosing - one doc casually gives out 50 mg of prednisone for skin rashes and down the same street another doc is denying an addison's patient needs 5 mg to avoid a crisis and dying.....weird!
I did some quick legal research. There are no jury verdicts to speak of for low dose steroids for maintenance of adrenal insufficiency. But there are some for wacky HIGH DOSE uses for allergies and overdosing without any informed consent. And some for FAILING to give it to folks who were dying in the hospital, like you experienced.
Dang, I feel like I am on the set of "in living color" with the dancers and all! LOL...
I know docs are afraid of narcotics, but they don't seem to have any fear of steroids. As for the risk of atrophy even the barest whiff of comprehension - I think it hardly exists! I was diagnosed, after my Cushing's days and my adrenals came out, with an auto-immune condition and the neuro just whipped out his script pad and said PRED! I screams WHOA!!! And ran out the door. There is no way in hades in that I am going to subject my body to more damage as well as take away my control in case of emergency but the neuro had zero concept. I go see another neuro at the #1 hospital in a major metro area nearby. He gives me a stuff to up my immune system in the hospital - well, during this, I get meningitis. My fever is 103.5. I am getting heart symptoms, WBC and RBC in the toilet. CAL, MAG, K, Na there as well - you get the picture - I am pretty much dying and I am telling them that I need my emergency steroids - please see my friggen emergency letter detailing my needs, my medic alert bracelet and my endo at the hospital. Do you know they put in my records that (and I quote) patient was not having the symptoms of an adrenal crisis!!!! I guess the anti-nausea meds and fluids were for fun... but it took 6 hours and my husband threatening to sue them before I got 80mg (they subtracted my normal dose!!!) . It took me a month to get better. These doctors treat patients with high doses of steroids all the time, and they don't know a thing about them. But I sure screamed it at them at the time. And then my endo came and gave me 250mg the next day - so I was crawling the walls - angry and mad.
I don't think most people would understand. The doctors sure do not - think of all the people with asthma, auto-immune diseases that are on high doses that eventually blow out the adrenals and the docs have no clue why or what they did. I don't know why they don't teach it or don't regulate the steroids like narcotics.
Steroids are evil.
I have met some people that took steroids short term and had effects - and others that were long term - you just cannot tell how it will effect a person. And you don't know if it will atrophy or blow into Cushing's either. Both blow.
I know docs are afraid of narcotics, but they don't seem to have any fear of steroids. As for the risk of atrophy even the barest whiff of comprehension - I think it hardly exists! I was diagnosed, after my Cushing's days and my adrenals came out, with an auto-immune condition and the neuro just whipped out his script pad and said PRED! I screams WHOA!!! And ran out the door. There is no way in hades in that I am going to subject my body to more damage as well as take away my control in case of emergency but the neuro had zero concept. I go see another neuro at the #1 hospital in a major metro area nearby. He gives me a stuff to up my immune system in the hospital - well, during this, I get meningitis. My fever is 103.5. I am getting heart symptoms, WBC and RBC in the toilet. CAL, MAG, K, Na there as well - you get the picture - I am pretty much dying and I am telling them that I need my emergency steroids - please see my friggen emergency letter detailing my needs, my medic alert bracelet and my endo at the hospital. Do you know they put in my records that (and I quote) patient was not having the symptoms of an adrenal crisis!!!! I guess the anti-nausea meds and fluids were for fun... but it took 6 hours and my husband threatening to sue them before I got 80mg (they subtracted my normal dose!!!) . It took me a month to get better. These doctors treat patients with high doses of steroids all the time, and they don't know a thing about them. But I sure screamed it at them at the time. And then my endo came and gave me 250mg the next day - so I was crawling the walls - angry and mad.
I don't think most people would understand. The doctors sure do not - think of all the people with asthma, auto-immune diseases that are on high doses that eventually blow out the adrenals and the docs have no clue why or what they did. I don't know why they don't teach it or don't regulate the steroids like narcotics.
Steroids are evil.
I have met some people that took steroids short term and had effects - and others that were long term - you just cannot tell how it will effect a person. And you don't know if it will atrophy or blow into Cushing's either. Both blow.
I see why my question looks confusing, it's just reflecting the internal mental confusion inside my brain!
I guess what I'm wondering is this:
Compare cortisol to other hormones that get replaced, like, say, thyroid.
Your thyroid gland may put out SOME thyroxine, but not enough. So you replace the part that's missing, or at least you try to get the dosing right. They measure the TSH to see if the hypothalamus and pit 'agree' with the dose. When the TSH gets into a certain range, they (doctors) say "OK, we got your dose about right. Now, you can remain on this for years. But at some point in the future, the thyroid might atrophy a bit or the autoimmune disease could progress, and this dose won't cut the mustard anymore, so we'll need to increase it."
But they don't say "We better not give you thyroxine! If we do, it'll atrophy your thyroid, making it not work. That'd be awful, cuz then we'd need to give you THYROXINE! Which would be awful, cuz if we do, it'll further atrophy your thyroid, making it not work. That'd be awful......"etc., etc, etc.
I'm being a bit sarcastic, but I can see that one gland might atrophy faster than another. And atrophied adrenals are a way more immediate and life threatening crisis-causing problem than atrophying thyroid. Yes, you can die of low thyroid, but you almost always have another week or two to do something about it. Adrenal crisis is scary cuz among other things, it sneaks up on you and hits you when you're not looking, like living with a possibly reformed axe murderer who's on psych meds and probably took his pills this week, maybe. A minor infection can quickly transmogrify into an ambulance ride if not dosed just right.
(Note: 'transmogrify' is a really cool word I use so people will think I"m smart. Is it wroking???)
But, philosophically, isn't ANY hormone replacement therapy an admission that something on your body is broke and busted and ain't going to get better by itself, probbly only worse?
(Note: if you use words like 'transmogrify' in one sentence, always follow it up by slang and misspellings like 'ain't' and 'probbly' in the next paragraph so people will know you're just a regular kinda person after all...)
I had a doctor tell me that the reason they're cautious prescribing glucocorticoids is 'medico-legal risk' among other things. I took that to mean that the atrophy process could be blamed on the doctor, who would then be liable in the eyes of a dumb jury who didn't grasp that atrophy was inevitable and no one knows the rate of progression.
So what I'm wondering is this....is the fear of lawsuits in the mind of the doctors really a justifiable risk? Are there juries all over this fair land of ours handing out million dollar verdicts against hospitals and doctors like they were candy? Or is this more a figment of a furtive legal imagination, a kneejerk response to fear of a risk that rarely materializes? Is it 'old news', meaning that the lawsuits against steroid dispensing doctors really did take place and ruin some careers, but that was back in the 1970's and 1980's when the risk of atrophy was not understood well and some doctors were too free in prescribing their 'miracle juice' to patients whose adrenals were not really at fault. That would justifiably make someone angry, being told that their adrenals were shut down by a medicine that isn't helping, but now they have to stay with it for life cuz the doctor wasn't thorough in checking other angles first.
Are those lawsuits really happening anymore? Is the rate of atrophy so fast and furious and certain that the caution is truly appropriate? Or has the pendulum swung the other way so that people who would benefit enormously from steroids are being told they're just not sick enough (to justify the doctor risking his career and status by prescribing)
So what I'm trying to get is a feel from actual patients on real experiences of atrophy so less of our decisions will be based on assumptions and more on real world experiences. Most endocrinologists rarely treat adrenal insufficiency and a 'high end' clinic doctor said the number of patients she treats with cortisone is exactly 5. Which is more than most, so I'm not so sure the doctor is the source of the most experience in this area. I wonder if the user group base we have access to isn't, in fact, a better, more comprehensive resource than her experience.
I feel so much better now after dumping all that....!
Sorry for that....if I was better at expressing myself, I probbly coulda found a quicker way to explainerize it.....
I guess what I'm wondering is this:
Compare cortisol to other hormones that get replaced, like, say, thyroid.
Your thyroid gland may put out SOME thyroxine, but not enough. So you replace the part that's missing, or at least you try to get the dosing right. They measure the TSH to see if the hypothalamus and pit 'agree' with the dose. When the TSH gets into a certain range, they (doctors) say "OK, we got your dose about right. Now, you can remain on this for years. But at some point in the future, the thyroid might atrophy a bit or the autoimmune disease could progress, and this dose won't cut the mustard anymore, so we'll need to increase it."
But they don't say "We better not give you thyroxine! If we do, it'll atrophy your thyroid, making it not work. That'd be awful, cuz then we'd need to give you THYROXINE! Which would be awful, cuz if we do, it'll further atrophy your thyroid, making it not work. That'd be awful......"etc., etc, etc.
I'm being a bit sarcastic, but I can see that one gland might atrophy faster than another. And atrophied adrenals are a way more immediate and life threatening crisis-causing problem than atrophying thyroid. Yes, you can die of low thyroid, but you almost always have another week or two to do something about it. Adrenal crisis is scary cuz among other things, it sneaks up on you and hits you when you're not looking, like living with a possibly reformed axe murderer who's on psych meds and probably took his pills this week, maybe. A minor infection can quickly transmogrify into an ambulance ride if not dosed just right.
(Note: 'transmogrify' is a really cool word I use so people will think I"m smart. Is it wroking???)
But, philosophically, isn't ANY hormone replacement therapy an admission that something on your body is broke and busted and ain't going to get better by itself, probbly only worse?
(Note: if you use words like 'transmogrify' in one sentence, always follow it up by slang and misspellings like 'ain't' and 'probbly' in the next paragraph so people will know you're just a regular kinda person after all...)
I had a doctor tell me that the reason they're cautious prescribing glucocorticoids is 'medico-legal risk' among other things. I took that to mean that the atrophy process could be blamed on the doctor, who would then be liable in the eyes of a dumb jury who didn't grasp that atrophy was inevitable and no one knows the rate of progression.
So what I'm wondering is this....is the fear of lawsuits in the mind of the doctors really a justifiable risk? Are there juries all over this fair land of ours handing out million dollar verdicts against hospitals and doctors like they were candy? Or is this more a figment of a furtive legal imagination, a kneejerk response to fear of a risk that rarely materializes? Is it 'old news', meaning that the lawsuits against steroid dispensing doctors really did take place and ruin some careers, but that was back in the 1970's and 1980's when the risk of atrophy was not understood well and some doctors were too free in prescribing their 'miracle juice' to patients whose adrenals were not really at fault. That would justifiably make someone angry, being told that their adrenals were shut down by a medicine that isn't helping, but now they have to stay with it for life cuz the doctor wasn't thorough in checking other angles first.
Are those lawsuits really happening anymore? Is the rate of atrophy so fast and furious and certain that the caution is truly appropriate? Or has the pendulum swung the other way so that people who would benefit enormously from steroids are being told they're just not sick enough (to justify the doctor risking his career and status by prescribing)
So what I'm trying to get is a feel from actual patients on real experiences of atrophy so less of our decisions will be based on assumptions and more on real world experiences. Most endocrinologists rarely treat adrenal insufficiency and a 'high end' clinic doctor said the number of patients she treats with cortisone is exactly 5. Which is more than most, so I'm not so sure the doctor is the source of the most experience in this area. I wonder if the user group base we have access to isn't, in fact, a better, more comprehensive resource than her experience.
I feel so much better now after dumping all that....!
Sorry for that....if I was better at expressing myself, I probbly coulda found a quicker way to explainerize it.....
Once you replace, the adrenals are not functional. So the above - "long term therapy" is, I thought, the response you wanted? So it is a function of time, as long as the dose replaces the function. But yeah, it is hard to find anything...
I know long term corticosteroids will eventually cause atrophy. Not sure if that's more common with high doses, though, or physiological levels, like 15-20 milligrams.
Trouble with gathering info on this topic is the keywords "Cortisone" and atrophy don't distinguish between low and high doses. So research is mostly at dead end so far. There is not much in print on physiological doses....not enough people on it to generate much research I guess. So we're left with experience that.... doesn't really address the question.
Hmmm..?
Trouble with gathering info on this topic is the keywords "Cortisone" and atrophy don't distinguish between low and high doses. So research is mostly at dead end so far. There is not much in print on physiological doses....not enough people on it to generate much research I guess. So we're left with experience that.... doesn't really address the question.
Hmmm..?
Yes, corticosteroids WILL atrophy your adrenals. But it will not happen with one dose.
This is from a pathology website:
http://library.med.utah.edu/WebPath/ENDOHTML/ENDO003.html
The pair of adrenals in the center are normal. Those at the top come from a patient with adrenal atrophy (with either Addison's disease or long-term corticosteroid therapy). The adrenals at the bottom represent bilateral cortical hyperplasia. This could be due to a pituitary adenoma secreting ACTH (Cushing's disease), or Cushing's syndrome from ectopic ACTH production, or idiopathic adrenal hyperplasia
This is from a pathology website:
http://library.med.utah.edu/WebPath/ENDOHTML/ENDO003.html
The pair of adrenals in the center are normal. Those at the top come from a patient with adrenal atrophy (with either Addison's disease or long-term corticosteroid therapy). The adrenals at the bottom represent bilateral cortical hyperplasia. This could be due to a pituitary adenoma secreting ACTH (Cushing's disease), or Cushing's syndrome from ectopic ACTH production, or idiopathic adrenal hyperplasia
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