Thank you so much for sharing. I have a 4 and 1 year old and I'm struggling. My endo said of course you feel better when your taking more steriods, everyone does. I'm like YOU DONT UNDERSTAND, even walking is difficult some days
Oh my yes I have heard that MANY times...but when the steroids make you feel alive and you can walk and climb stairs...that is completely different...I completely understand my friend. ❤
Thank you so much for all you do Jill. I loved the Dr Wass interview and wondering if anyone in the Addison community hass any research that states what Dr. Wass was saying that I can bring into my endocrinologist in the US?
I certainly hope you are right about all of this. I am on 15 mgs of hydrocortisone and 1 mg of prednisone per day plus Florinef (0.1 mgs). I have very few days where I feel bad. I weight train 5 days per week, plus I am super active. I am an average weight. I am 63 and have had Addison’s for 19 years most of it of this dose. The 1 mg of of prednisone was added in the morning to bring down my ACTH levels and the tan. It helped a lot. Everyone is different for sure. I am lucky I have a great Endo and I do listen to her. Please be careful most will not tolerate that much steroid.
sounds like you found what works for you...that is great....you sound like you feel well...awesome...I hope everyone just advocates for themselves...most unfortunately do not have endos that support their quality of life
Well done Jill..I am going to write down what you said to your Endo when he wanted to reduce your steroids. He could not argue with you. 😂😂Brilliant....and absolutely correct....Endo's are always trying to get us to stay on the " Recommened" dose of steroids? Who on earth made this recommendation. Obviously did NOT have Adrenal Insufficiency...I liked how you compared to a diabetic.....He could not argue with that either...!!! I agree. Each of us are different in how we metabolise Steroids!! But there is no test for us ( unlike diabetics) As no pharma company is interested in research. As there are too few of us to make them any money!! Wheras the diabetic community is growing daily. And could be totally avoided with diet and excercise. We cant change our AI. Or reverse it. All we can do is listen to our bodies and updose before we go into the low cortisol coma. When our brain and body shuts down...Maybe i will make a video of me with zero energy. No brain function no energy. Blurres vision and slurred speech. Unable to cope with sound or light...? As the Endo's haven't a bloody clue how it feels to live with AI do they? We all have to stand up for ourselves....for us to live any sort of quality of life....its us thats syfferring. Not the Endo's.!!!! The more we state our case. And stand by our guns. Maybe tbe Endo's will start to listen....!! Its when Endo's refuse to listen that really drives me nuts. Or start arguing with you? Last time this happened. I said to my Endo." DO you have AI. No cortisol in your body"? " No" " So you have no idea how i feel have you? I dont care what you read in a book years ago about AI. You havent a clue what its like to live with it. The ups the downs. The days in bed. The lack of quality of life.!! The awfull symptoms....how each day is differrent...how we go up n down. Cortisol affects so many systems in the body. Every cell....So dont tell me how i feel because you dotlnt know. If you listened to yoyr patients more. You may learn something about AI"😂😂😂😂 I dont suffer fools. Consultant or no consultant...Same consultant tried to tell me my tbyroxine dose was too hightl?? I should reduce it? I refused...Next visit he said" i see reducing your thyroxine has worked. Your bloods are all normal...!! " No I did not change my dose at all. As i did not agree it needed reducing...."😅😅 There was nothing He could say. As bloods were fine... We know our own bodies better than any Endo in the World...fact...!! Medicine has let us down badly with AI.... Diabetics get the pump. The nurses tbe constant support. Eye tests. Monitoring equipment...!! We get bugger all???? I too took on board a real expert Endo. Proffesor John Wass. What he said about updosing...if you evan think you need it. Take it. And its really helped me manage thus illness. As thats all we can do Med wise. Manage our meds. To our bodies needs...!! Which change each day. Depending on stress illness. Emotional upsets. What activity we have done ect ect...for some unknown reason. Most Endo's do not comprehend this? But all of us fully understand...how awfull we feel....when cortisol is burned through and run out in our bodies.. I am goung to start a diary...as cant rely on my memory.😂 Something else i researched.After an AI lady mentioned on fb site. My blurred vision issue during the day....Jill.. I asked Endo, GP. No idea of cause...? Some brands of hydrocortisone definately cause blurred vision in me.( and is labelled as side effect in drug leaflet?) Genesis HC i feel much better on. No daytime constant blurred vision. Yay!! Yet another Irish Brand. Which i researched the fillers. Contained talc!! And was made in China!!! Cheap and rubbish! So i am keeping a diary on that too. And ask my GP only to prescribe Genesis. HC in future... We research. Then teach the drs it appears. But to be fair we have the time. Unlike the overstretched NHS.... All a learning curve aye.? I dont trust many Drs or pharma drugs tbh. But at least we can be precribed good quality steroids??? Surely ???
Great my friend...so many good points..I get blurred vision when my cortisol goes low...journal yes...we need to all them the endo how we feel and they will hear it again and again and again..then they will listen...yes...they don't know what it is like to be in our bodies...you got this friend! and prof Wass is amazing
The reason the recommend that total replacement should be below 30 mg HC is because of the increase risk of morbidity (cardiovascular disease, glaucoma, diabetes, cancer) and early death. The data suggests the issue is a direct result of the inadequacies of oral replacements. Each oral dose results in a period of excess glucocorticoids that is the equivalent of cortisol levels observed in healthy people experiencing extreme exertional stress. The outcome for patients on pumps is not the same because continuous infusion eliminates the high peaks that accompany oral dosing. Intensity clinical literature, suggests that if you are lucky enough to be on a pump your risk of side effects is actually significantly lower than patients on oral replacement,
Yes they need to find a way to level out patients oral dose to minimize the peaks of metabolism and make it more reflective of nature...like the pump for insulin for diabetics or yes I am sure my peaks are minimized and more controlled on the pump. I would be interested in knowing why 30 mg...I could never survive on that...and there are some many factors that influence the daily need for cortisol...metabolism, digestion, illness, stress, physical trauma,...I find weather, activity...the list goes on and on...30 mg may cover one day and not the next...it is like spinning a wheel...wish I could measure it and calculate like a diabetic can do with their diet and insulin...a diabetic could never be on a set insulin dose each day. Hopefully one day we will have these information to help us ❤ If I was below 30 mg I would be at higher risk of adrenal crisis and morbidity ❤
@@chronicallyfit_withjillThe pump was first trialed with fast metabolizers. Switching to the pump resulted in fast metabolizers reporting increased stability and fewer hospitalization. BTW, when I was on a high dose I did not gain weight, not everyone does. However, the shape of my face and colorization was similar. As I mentioned, if you are on the pump the risk of over replacement is much lower than if you are on a pump. So suggesting higher replacement doses for people of oral replacement could resulted in a significant increase of morbidity and mortality. You can find the long the longterm outcome studies on the web. Also I need on a high dose because I lead a very active lifestyle and often felt like crap. However, I was not a fast metabolizers. Why did I feel low despite being on a high dose? Glucocorticoids alter the response properties of the glucocorticoid receptor. The higher the replacement dose the more active the receptor. Increased receptor activity triggers the production of cofactors (proteins) that actually reduce the responsiveness of the receptor. In other words, more steroids result in a lower receptor responses. However, some of the negative responses remain normal. Hence fast metabolizers on high replacement doses had symptoms of both high and low cortisol. BTW, there are test that can be done to show signs of cortisol replacement. One is to test for the expression of genes that are associated with the breakdown of bone tissue. Btw, the average daily cortisol of a healthy person is 8 to 10 mg a day. In people with intact HPAs that experience chronic stress cortisol output can be as high as 30 mg. However, people with intact HPAs, experience slower wound healing and an increase in the rate of expression of genes associated with the breakdown of bone tissue.
My daughter is 17 years old and she has been diagnosed 6 weeks ago. She needs constant double dose to stay out of a wheelchair. I just don’t know what to do! Her heart rate is too high but she’s had that for years. Her cortisol level was flat line. We think Covid killed her adrenal glands. So lost to know what to do she’s exhausted all the time. Xx
I take 30mg of cortif and the want to decrease it. Everytime she does that I can barely move. I have had three crises this year one landing me and n the hospital for six weeks
oh no keep fighting and get your resources together to argue and support your needs..anything I can do please let me know...if you don't have the books get the books!
Hi Jill. I am going through the same scenario with my endocrinologist. Actually, they drop me because I take too much steroids they said ;so I got up walked out and now I’m in the process of finding a new one at UT health. I hope you don’t mind. I’m taking this video to my new endocrinologist. Also, I would love to talk to you about stress dosing. I still wake up very emotional crying very achy like I’m caring a bag of cement on my neck. I would rather talk to you about stress dosing, since you are experienced for 14 years, only have four years and the rest of my life to go. So let me know how I can get in touch or we can talk in person or just talk this way but I need some advice on stressing. Thank you.j🎉
oh friend...good for you for standing up for yourself...use whatever you need of mine...yes we can chat email me or go to my website to set up a connect with Jill chat ❤
I find very little in fact, just about zero information on the net about managing Addison's with solu-cortef. Lots of hits for using it in emergency situations and everyone with AI should have a kit but nothing regarding dosing or frequency. I have to use SC as I don't respond to oral HC, which in itself is not unusual, I've read that appx 20% of people don't,; My meds have to be crushed, diluted with water and taken via a feeding tube which eliminates other steroids. Originally I was on 80mg a day and it was an awful experience, mood swings, head felt cloudy. confusion and hard to think or process in between bouts of feeling ok. No two days were ever the same. I had to change endos and my new one wants me to use the least amount of steroids possible, and after trailing down I'm now using 23mg SC daily ( 8 - 8- 5 @6hrs)......I do notice less muscle tension and neuropathy in my toes has decreased considerably. So it's so far so good I think for me anyways to be on a low dose...
That is great you are finding what is best for you..yes some do perfect on low dose and some don't (like me)...very individual. Hope you keep doing well!
@@chronicallyfit_withjill One thing I have found. although the steroids (cortef and aldosterone ) give me the ability to function, the one thing I'm missing is the "zip" and enthusiasm both mentally and physically, possibly due to the lack of adrenaline? I do take a hit of black coffee now and then and I find that helps a bit, guess I've become sensitive to the effects of caffeine so it doesn't take much. Is there any information or a site you know of that covers "living without adrenaline" ? Do you have any thoughts on taking prescribed stimulants like Ridalin ? And just to clarify, I never was an "Adrenaline Junky", extreme sports, parachute jumping etc were never on my radar at all although I did like a round of golf without a cart now and then 😁, but I always did things with a certain amount of gusto and enthusiasm which has all just about disappeared and like the old music hall line.... "Where's your get up and go?"..... "It got up and went"..
Thank you so much for sharing. I have a 4 and 1 year old and I'm struggling. My endo said of course you feel better when your taking more steriods, everyone does. I'm like YOU DONT UNDERSTAND, even walking is difficult some days
Oh my yes I have heard that MANY times...but when the steroids make you feel alive and you can walk and climb stairs...that is completely different...I completely understand my friend. ❤
I dont know why, but I cried through this. High quality of life is a foreign concept these days.
hugs my friend..but yes our quality of life is often not considered
@@chronicallyfit_withjill 💔
@@chronicallyfit_withjill😅
I need you to attend my appointments with me lol. I need to memorise this. Thanks Jill.❤
Ill come LOL...❤
Thank you so much for all you do Jill. I loved the Dr Wass interview and wondering if anyone in the Addison community hass any research that states what Dr. Wass was saying that I can bring into my endocrinologist in the US?
thank you friend...Dr Wass is amazing. Just a lovely human ❤
I certainly hope you are right about all of this. I am on 15 mgs of hydrocortisone and 1 mg of prednisone per day plus Florinef (0.1 mgs). I have very few days where I feel bad. I weight train 5 days per week, plus I am super active. I am an average weight. I am 63 and have had Addison’s for 19 years most of it of this dose. The 1 mg of of prednisone was added in the morning to bring down my ACTH levels and the tan. It helped a lot. Everyone is different for sure.
I am lucky I have a great Endo and I do listen to her. Please be careful most will not tolerate that much steroid.
sounds like you found what works for you...that is great....you sound like you feel well...awesome...I hope everyone just advocates for themselves...most unfortunately do not have endos that support their quality of life
Your dose is not excessive.
Well done Jill..I am going to write down what you said to your Endo when he wanted to reduce your steroids. He could not argue with you. 😂😂Brilliant....and absolutely correct....Endo's are always trying to get us to stay on the " Recommened" dose of steroids? Who on earth made this recommendation. Obviously did NOT have Adrenal Insufficiency...I liked how you compared to a diabetic.....He could not argue with that either...!!! I agree. Each of us are different in how we metabolise Steroids!! But there is no test for us ( unlike diabetics) As no pharma company is interested in research. As there are too few of us to make them any money!! Wheras the diabetic community is growing daily. And could be totally avoided with diet and excercise. We cant change our AI. Or reverse it. All we can do is listen to our bodies and updose before we go into the low cortisol coma. When our brain and body shuts down...Maybe i will make a video of me with zero energy. No brain function no energy. Blurres vision and slurred speech. Unable to cope with sound or light...? As the Endo's haven't a bloody clue how it feels to live with AI do they?
We all have to stand up for ourselves....for us to live any sort of quality of life....its us thats syfferring. Not the Endo's.!!!!
The more we state our case. And stand by our guns. Maybe tbe Endo's will start to listen....!! Its when Endo's refuse to listen that really drives me nuts. Or start arguing with you? Last time this happened. I said to my Endo." DO you have AI. No cortisol in your body"? " No" " So you have no idea how i feel have you? I dont care what you read in a book years ago about AI. You havent a clue what its like to live with it. The ups the downs. The days in bed. The lack of quality of life.!! The awfull symptoms....how each day is differrent...how we go up n down. Cortisol affects so many systems in the body. Every cell....So dont tell me how i feel because you dotlnt know. If you listened to yoyr patients more. You may learn something about AI"😂😂😂😂
I dont suffer fools. Consultant or no consultant...Same consultant tried to tell me my tbyroxine dose was too hightl?? I should reduce it? I refused...Next visit he said" i see reducing your thyroxine has worked. Your bloods are all normal...!!
" No I did not change my dose at all. As i did not agree it needed reducing...."😅😅
There was nothing He could say. As bloods were fine...
We know our own bodies better than any Endo in the World...fact...!!
Medicine has let us down badly with AI....
Diabetics get the pump. The nurses tbe constant support. Eye tests. Monitoring equipment...!!
We get bugger all????
I too took on board a real expert Endo. Proffesor John Wass. What he said about updosing...if you evan think you need it. Take it. And its really helped me manage thus illness.
As thats all we can do Med wise. Manage our meds. To our bodies needs...!! Which change each day. Depending on stress illness. Emotional upsets. What activity we have done ect ect...for some unknown reason. Most Endo's do not comprehend this?
But all of us fully understand...how awfull we feel....when cortisol is burned through and run out in our bodies..
I am goung to start a diary...as cant rely on my memory.😂
Something else i researched.After an AI lady mentioned on fb site. My blurred vision issue during the day....Jill..
I asked Endo, GP. No idea of cause...?
Some brands of hydrocortisone definately cause blurred vision in me.( and is labelled as side effect in drug leaflet?)
Genesis HC i feel much better on. No daytime constant blurred vision. Yay!!
Yet another Irish Brand. Which i researched the fillers. Contained talc!! And was made in China!!! Cheap and rubbish!
So i am keeping a diary on that too. And ask my GP only to prescribe Genesis. HC in future...
We research. Then teach the drs it appears. But to be fair we have the time. Unlike the overstretched NHS....
All a learning curve aye.? I dont trust many Drs or pharma drugs tbh. But at least we can be precribed good quality steroids??? Surely ???
Great my friend...so many good points..I get blurred vision when my cortisol goes low...journal yes...we need to all them the endo how we feel and they will hear it again and again and again..then they will listen...yes...they don't know what it is like to be in our bodies...you got this friend! and prof Wass is amazing
The reason the recommend that total replacement should be below 30 mg HC is because of the increase risk of morbidity (cardiovascular disease, glaucoma, diabetes, cancer) and early death. The data suggests the issue is a direct result of the inadequacies of oral replacements. Each oral dose results in a period of excess glucocorticoids that is the equivalent of cortisol levels observed in healthy people experiencing extreme exertional stress. The outcome for patients on pumps is not the same because continuous infusion eliminates the high peaks that accompany oral dosing. Intensity clinical literature, suggests that if you are lucky enough to be on a pump your risk of side effects is actually significantly lower than patients on oral replacement,
Yes they need to find a way to level out patients oral dose to minimize the peaks of metabolism and make it more reflective of nature...like the pump for insulin for diabetics or yes I am sure my peaks are minimized and more controlled on the pump. I would be interested in knowing why 30 mg...I could never survive on that...and there are some many factors that influence the daily need for cortisol...metabolism, digestion, illness, stress, physical trauma,...I find weather, activity...the list goes on and on...30 mg may cover one day and not the next...it is like spinning a wheel...wish I could measure it and calculate like a diabetic can do with their diet and insulin...a diabetic could never be on a set insulin dose each day. Hopefully one day we will have these information to help us ❤ If I was below 30 mg I would be at higher risk of adrenal crisis and morbidity ❤
@@chronicallyfit_withjillThe pump was first trialed with fast metabolizers. Switching to the pump resulted in fast metabolizers reporting increased stability and fewer hospitalization. BTW, when I was on a high dose I did not gain weight, not everyone does. However, the shape of my face and colorization was similar. As I mentioned, if you are on the pump the risk of over replacement is much lower than if you are on a pump. So suggesting higher replacement doses for people of oral replacement could resulted in a significant increase of morbidity and mortality. You can find the long the longterm outcome studies on the web.
Also I need on a high dose because I lead a very active lifestyle and often felt like crap. However, I was not a fast metabolizers. Why did I feel low despite being on a high dose? Glucocorticoids alter the response properties of the glucocorticoid receptor. The higher the replacement dose the more active the receptor. Increased receptor activity triggers the production of cofactors (proteins) that actually reduce the responsiveness of the receptor. In other words, more steroids result in a lower receptor responses. However, some of the negative responses remain normal. Hence fast metabolizers on high replacement doses had symptoms of both high and low cortisol.
BTW, there are test that can be done to show signs of cortisol replacement. One is to test for the expression of genes that are associated with the breakdown of bone tissue. Btw, the average daily cortisol of a healthy person is 8 to 10 mg a day. In people with intact HPAs that experience chronic stress cortisol output can be as high as 30 mg. However, people with intact HPAs, experience slower wound healing and an increase in the rate of expression of genes associated with the breakdown of bone tissue.
I’m going through that right now
you got this...stay strong 💪❤
My daughter is 17 years old and she has been diagnosed 6 weeks ago. She needs constant double dose to stay out of a wheelchair. I just don’t know what to do! Her heart rate is too high but she’s had that for years. Her cortisol level was flat line. We think Covid killed her adrenal glands. So lost to know what to do she’s exhausted all the time. Xx
oh new friend...I am so sorry she is struggling....keep advocating and learning. ❤
I take 30mg of cortif and the want to decrease it. Everytime she does that I can barely move. I have had three crises this year one landing me and n the hospital for six weeks
I'm so sorry!😢
❤
oh no keep fighting and get your resources together to argue and support your needs..anything I can do please let me know...if you don't have the books get the books!
Oh my word I’m so sorry. Get a new Dr!
Hi Jill. I am going through the same scenario with my endocrinologist. Actually, they drop me because I take too much steroids they said ;so I got up walked out and now I’m in the process of finding a new one at UT health. I hope you don’t mind. I’m taking this video to my new endocrinologist. Also, I would love to talk to you about stress dosing. I still wake up very emotional crying very achy like I’m caring a bag of cement on my neck. I would rather talk to you about stress dosing, since you are experienced for 14 years, only have four years and the rest of my life to go. So let me know how I can get in touch or we can talk in person or just talk this way but I need some advice on stressing. Thank you.j🎉
oh friend...good for you for standing up for yourself...use whatever you need of mine...yes we can chat email me or go to my website to set up a connect with Jill chat ❤
I find very little in fact, just about zero information on the net about managing Addison's with solu-cortef. Lots of hits for using it in emergency situations and everyone with AI should have a kit but nothing regarding dosing or frequency. I have to use SC as I don't respond to oral HC, which in itself is not unusual, I've read that appx 20% of people don't,; My meds have to be crushed, diluted with water and taken via a feeding tube which eliminates other steroids. Originally I was on 80mg a day and it was an awful experience, mood swings, head felt cloudy. confusion and hard to think or process in between bouts of feeling ok. No two days were ever the same. I had to change endos and my new one wants me to use the least amount of steroids possible, and after trailing down I'm now using 23mg SC daily ( 8 - 8- 5 @6hrs)......I do notice less muscle tension and neuropathy in my toes has decreased considerably. So it's so far so good I think for me anyways to be on a low dose...
That is great you are finding what is best for you..yes some do perfect on low dose and some don't (like me)...very individual. Hope you keep doing well!
@@chronicallyfit_withjill One thing I have found. although the steroids (cortef and aldosterone ) give me the ability to function, the one thing I'm missing is the "zip" and enthusiasm both mentally and physically, possibly due to the lack of adrenaline? I do take a hit of black coffee now and then and I find that helps a bit, guess I've become sensitive to the effects of caffeine so it doesn't take much. Is there any information or a site you know of that covers "living without adrenaline" ? Do you have any thoughts on taking prescribed stimulants like Ridalin ? And just to clarify, I never was an "Adrenaline Junky", extreme sports, parachute jumping etc were never on my radar at all although I did like a round of golf without a cart now and then 😁, but I always did things with a certain amount of gusto and enthusiasm which has all just about disappeared and like the old music hall line.... "Where's your get up and go?"..... "It got up and went"..