Yes more suffering than we think. some people think they have anxiety for no reason because of steroid induced Cushings syndrome or deficient with the damage caused should be a law against destroying a patient out of negligence. Reminder any one with Abuse early in life or depression very liklely can be a victim from steroids. mental illness or stress can be enough for steroids to cause life problem.
I live in a Canadian Province where essentially you can’t get diagnosed with anything until you are dead. I have been having episodes for the past three or four years and my morning cortisol is dangerously low. I can’t get any further testing done because my doctor is too busy to follow up, so I took this into my own hands. I take L-tyrosine, B5 and large doses of vitamin C along with a ton of rest. Pray for me!
We are sorry to hear you are unable to receive a proper diagnosis. You should reach out to the Canadian Addison Society to see if they can help offer any resources for find an Endocrinologist who can help: www.addisonsociety.ca/
Once you have adrenal gland damage its not good and waking like death is horrifying taking hours to feel half normal. 7 years ago 1 injection for Inflamation that could have gone away and now its to late and they and my doctor care less. they mess you up worse on other none related money making drugs. I hate to say this but its what it is.
Thank you, this was very informative. I have SAI and was diagnosed in 2009. My ACTH was very low. Although it is said that with SAI your sodium levels don't drop and you don't get a tan, well for some reason my sodium and potassium levels drop dangerously, I must take electrolytes and potassium tablets, and I have a tan which especially gets darker when low on cortisol or pre crisis. This has been a puzzle for my doctors. I wonder if anyone else is like me? 🤔
Hello Homa, here's a response from NADF's Medical Advisor: The hyperpigmentation seen in primary adrenal insufficiency is due to the overproduction of melanocyte stimulating hormone in association with the overproduction of ACTH in the pituitary. The MSH stimulates the melanocytes in the skin, causing a darkening. It is not really a tan, which would be pronounced in sun exposed areas. The hyperpigmentation of PAI is all over, including areas not exposed to the sun, and includes the gums in the mouth. If a person with SAI gets a tan, it is due to something else, perhaps other medications that can cause photosensitivity. There are many medications that do that. The tendency to have both low sodium and potassium suggests water overload, medication side effects, or hypothyroidism.
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@@lorienglerginsburg1920 some with cushings syndrome or addisons don't get these dark areas and miss out suffering. if they are lucky enough to make it to the one and only largest clinic . yet they keep inducing this illness in people suffering from a simple inflamation that in time would go away. or some can go crazy with out stress control and given counseling being useless confusing and frustrating the patient even worse. this is more dangerous and who cares enough to know the difference in millions of patients with poison ivy or any such like... also people with early child abuse or depression should be aware .
I have Eosinophils Gastritis been on budesonide for 6 yrs, stopped but did not taper right and went into Adrenal crisis, how do you know when your adrenal glands start working. They started me on 20 mg of hydrocortisone in the morning and 10 in the afternoon for 7 days then next week drop to 10 mg and 5 mg, I’m allergic to Gatorade, do you also have a positive ANA with AI.
I am currently living with Addison’s. I am 80 years old and have been battling this for quite a few years, but did not know what it was. I have also been having issues with the hydrocortisone to the point that I feel like I am smothering day and night. I definitely know that I’m having a lot of side effects from this and I definitely cannot take it. It’s a battle with my Endo chronologist. I have been to the hospital emergency I have seen so many doctors and had to give blood everywhere. I’ll do much better on prednisone and there seems to be a problem with them giving that to me a little bit, I have said I would rather have quality of life than quantity since I will be 81 pretty soon.
We are sorry to hear that you have been experiencing side effects. If you'd like to explore finding another Endocrinologist who can offer you support and perhaps help you make the switch to Prednisone, you can check out the NADF Patient Recommended Dr map: www.nadf.us/patient-recommended-doctors.html . If you have any questions, please reach out to nadfsupport@nadf.us
Wow 80 is Good but I know the suffering. many or some end up going crazy being steroid induced with adrenal shut down or steroid induced cushings like or what ever you call it. I bet some are in prison from out rage caused from the damage this can do to the brain. any one could be rejects taking hydrocortisone and out of luck. didn't know any one could live this long taking steroid all their lives. suffering 8 years from injection of dexamethasone is enough giving up on a full recovery still waking with death like anxiety feeling like smothering my self. all ways taking up to 3 hours before feeling some what normal taking other medications that will shorten life span. Hope i'm as healthy as you . Victims with child abuse or depression stress living should never take steroid.
Wow, how is this for a start?: “NADF does not engage in the practice of medicine, is not a medical authority, and does not claim medical knowledge”. I utterly detest these statements, always passing the hot potato to the so called “experts”. Which is to mean the medical establishment in charge of controlling current medical dogma. Thanks but no thanks.
God be with you and I hope you are getting better. Love from another sufferer
Yes more suffering than we think. some people think they have anxiety for no reason because of steroid induced Cushings syndrome or deficient with the damage caused should be a law against destroying a patient out of negligence. Reminder any one with Abuse early in life or depression very liklely can be a victim from steroids. mental illness or stress can be enough for steroids to cause life problem.
I live in a Canadian Province where essentially you can’t get diagnosed with anything until you are dead. I have been having episodes for the past three or four years and my morning cortisol is dangerously low. I can’t get any further testing done because my doctor is too busy to follow up, so I took this into my own hands. I take L-tyrosine, B5 and large doses of vitamin C along with a ton of rest. Pray for me!
We are sorry to hear you are unable to receive a proper diagnosis. You should reach out to the Canadian Addison Society to see if they can help offer any resources for find an Endocrinologist who can help:
www.addisonsociety.ca/
@@nadf_adrenal wow, that’s actually really good advice. I’ll call tomorrow 🥳
You are being prayed for😊.🙏🏻🙏🏻🙏🏻
So addisons disease is rare I read. I wonder if it's not as rare as they think but actually woefully under diagnosed
Once you have adrenal gland damage its not good and waking like death is horrifying taking hours to feel half normal. 7 years ago 1 injection for Inflamation that could have gone away and now its to late and they and my doctor care less. they mess you up worse on other none related money making drugs. I hate to say this but its what it is.
Thank you, this was very informative. I have SAI and was diagnosed in 2009. My ACTH was very low. Although it is said that with SAI your sodium levels don't drop and you don't get a tan, well for some reason my sodium and potassium levels drop dangerously, I must take electrolytes and potassium tablets, and I have a tan which especially gets darker when low on cortisol or pre crisis. This has been a puzzle for my doctors. I wonder if anyone else is like me? 🤔
Hello Homa, here's a response from NADF's Medical Advisor: The hyperpigmentation seen in primary adrenal insufficiency is due to the overproduction of melanocyte stimulating hormone in association with the overproduction of ACTH in the pituitary. The MSH stimulates the melanocytes in the skin, causing a darkening. It is not really a tan, which would be pronounced in sun exposed areas. The hyperpigmentation of PAI is all over, including areas not exposed to the sun, and includes the gums in the mouth. If a person with SAI gets a tan, it is due to something else, perhaps other medications that can cause photosensitivity. There are many medications that do that. The tendency to have both low sodium and potassium suggests water overload, medication side effects, or hypothyroidism.
My tan gets darker with stress levels going up, it’s like being the hulk😂
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Addisons or cushings like and some still tan or have dark areas of the body.
@@lorienglerginsburg1920 some with cushings syndrome or addisons don't get these dark areas and miss out suffering. if they are lucky enough to make it to the one and only largest clinic . yet they keep inducing this illness in people suffering from a simple inflamation that in time would go away. or some can go crazy with out stress control and given counseling being useless confusing and frustrating the patient even worse. this is more dangerous and who cares enough to know the difference in millions of patients with poison ivy or any such like... also people with early child abuse or depression should be aware .
Also for those of us cannot even run down the garden path who wants to run 3 miles ? Also what is with the hair loss?
I have Eosinophils Gastritis been on budesonide for 6 yrs, stopped but did not taper right and went into Adrenal crisis, how do you know when your adrenal glands start working. They started me on 20 mg of hydrocortisone in the morning and 10 in the afternoon for 7 days then next week drop to 10 mg and 5 mg, I’m allergic to Gatorade, do you also have a positive ANA with AI.
I am currently living with Addison’s. I am 80 years old and have been battling this for quite a few years, but did not know what it was. I have also been having issues with the hydrocortisone to the point that I feel like I am smothering day and night. I definitely know that I’m having a lot of side effects from this and I definitely cannot take it. It’s a battle with my Endo chronologist. I have been to the hospital emergency I have seen so many doctors and had to give blood everywhere. I’ll do much better on prednisone and there seems to be a problem with them giving that to me a little bit, I have said I would rather have quality of life than quantity since I will be 81 pretty soon.
We are sorry to hear that you have been experiencing side effects. If you'd like to explore finding another Endocrinologist who can offer you support and perhaps help you make the switch to Prednisone, you can check out the NADF Patient Recommended Dr map: www.nadf.us/patient-recommended-doctors.html . If you have any questions, please reach out to nadfsupport@nadf.us
Wow 80 is Good but I know the suffering. many or some end up going crazy being steroid induced with adrenal shut down or steroid induced cushings like or what ever you call it. I bet some are in prison from out rage caused from the damage this can do to the brain. any one could be rejects taking hydrocortisone and out of luck. didn't know any one could live this long taking steroid all their lives. suffering 8 years from injection of dexamethasone is enough giving up on a full recovery still waking with death like anxiety feeling like smothering my self. all ways taking up to 3 hours before feeling some what normal taking other medications that will shorten life span. Hope i'm as healthy as you . Victims with child abuse or depression stress living should never take steroid.
Great !! Ty!!
Did you ever take hydrocortisone?
No vitamins cure everything in America ya a joke. I know what you mean.
What about vitamins?
Vitamins have nothing to do or make cortisol levels change for better or worse. Vitamins won't cure or heal a broken leg .
Wow, how is this for a start?: “NADF does not engage in the practice of medicine, is not a medical authority, and does not claim medical knowledge”. I utterly detest these statements, always passing the hot potato to the so called “experts”. Which is to mean the medical establishment in charge of controlling current medical dogma. Thanks but no thanks.
NADF ? why endocronolgist are working only for some when half of it fails on patients in America.