I agree 100%, my symptoms were years in the making but no one knew. Thanks for getting this information out to the general public. We need to be heard, we need to be understood and we need help!!
Yes I have heard that from others as well...crazy isn't it but so interesting...our bodies and brains re amazing we just need to learn how to listen to it.
Thank you for sharing your experiences. It will be so helpful for someone suffering with no answers. I definitely had the symptoms at least 25 years prior to diagnosis. As well if you were born with dark skin it is even more difficult to notice the change in colour. I can remember body hair that stopped growing, seizures and doctors trying to give me all types of medication. Fortunately I did not take those medications and you are correct, it would have masked the actual disease. Thank you for all that you do. Stay blessed Jill.
Agreed. By sharing your story you are helping others. Put those early varied symptoms and pieces of the puzzle together...I have secondry..But had no body hair for 10 years prior to diagnosis.. fatigue. Wieght loss . No appetite.I had been diagnosed as hypo adrenal by my endo. Who i was under for cfs/ ME and hashimoto's. Strangely i had dark skin pigmentation on scars, palms hands...But passed SST. !! Endo did 4 more sst as he was convinced i had Addisons!! Passed all tests. Year prior to diagnosis...I felt like i was dying. Zero energy. Nausea. No appetite. Abdominal pain. Painfull joints. Blurred vision. Slurred speech. Suicidal depression. Lost so much weight. Vommiting. Constipation or diahhrria. Just lay on sofa unable to do anything much....!! Kept going to see GP... who was very good but treated each symptom. And did not relate them together!! I persisted. I knew what low Cortisol felt like. So i asked for a morning cortisol test along with every other blood test going..I knew i was very ill....Dr phoned with test results. Told me they were normal!! In August. Luckily i had my annual appointment with my Endo. I felt so ill . Told Endo i had asked for morning cortisol. Endo checked results. Got very cross as Cortisol very low. Then ordered SST. Which wad done few days later and i was diagnosed. My baseline morning cortisol was 7...no wonder i felt so ill.. Over 10 years i recon my adrenals were struggling. Since i had sepsis. Then a virus triggered cfs/ ME. Then i got covid. My AI symptoms started straight after covid??? I mentioned this to my new Endo. She said she had seen other patients whose AI began after covid??? I was feeling well before Covid.. Endo felt sure my AI caused by asthma drugs? But she also said its difficult to give a definative etiology of cause.. Either way. We have the same illness. Symptoms. Take same Hydrocortisone. Feel better. But not well. Up n down. Good days low cortisol days. Just spent 2 days in bed. Zonked out...slept rested. Now feeling better.... Its the luck of the draw if you get diagnosed. As its rare..sadly many are in crisis before diagnosis. Due to lack of awareness by GP's...!!!
Can I ask you a question? I'm in the process of diagnosis for Addison's, I have all the symptoms and the symptoms have been happening for the last 15 years, though, getting significantly, rapidly worse in the last few weeks, especially the hyperpigmentation and bronzing. I literally feel like I am dying. I went to the ER a couple weeks ago because I thought I was severely dehydrated, and based on my test results and talking to the DR, he was very concerned that I have Addison's and that I needed to see an Endo, ASAP, and even called my GP the next day and told them to get me to a specialist Immediately. You mentioned that your cortisol was 7, and that your endo said that was VERY LOW. I know each lab is different, do you know the specifics of your lab? I'm curious because I have gotten my cortisol checked 9 years ago, and my cortisol at 8 in the morning was 6, and "normal" based on the lab I went to was 5. Is a cortisol of 6 at 8 am, at 22-23 years of age normal?
yes friend....so many causes that can lead the adrenals to simply have had enough trying to fight and the symptoms get worse...different causes but similar treatment...keep fighting. You got this!
I was recently diagnosed with adrenal insufficiency and im remembering back decades of symptoms that never had any answers. One question i have is can hyperpigmentation resolve and reappear over time? I also started noticing darkening of the skin around the genitals when I was young that isn't always there. I've also had a bizarre experience where multiple thumbprint sized brown spots showed up all over my torso, no pain, not raised, then they would disappear.
Hey there...here is what I know from my experience. First...my dad had addisons and was deathly ill before dx...his pigmentation never resolved over the years...her remained very very dark. Myself over time mine I think mostly went away but during times of stress and very low cortisol/crisis the darkness returns..as one point my feet were a yellowish/brown ting for months willing I was struggling. Hope that helps a bit ❤
I asked my dr about my dads dark colour he said likely his body continued to have high ACTH from the pituitary and was always in fear of low cortisol and couldn't 'shut off'..my poor daddy
@@chronicallyfit_withjill I know they have been working on the epi pen type of injections for years and all it just seems like we need some sort of preventative as well as rescue and obviously with the pump technology rapid testing of these levels and automation of the distribution of meds is a game changer. I think in many areas …not just AI and diabetes. When enough money, resources, scientists etc., and reusing already utilized technology is thrown at “rapid testing”, it seems we should be able to get more reliable resources available in a reasonable amount of time. Let me get off my soapbox - to say I see this guy who is always talking about new tech with diabetes and see him going into these R & D labs, factories etc and I believe you would be an amazing advocate for AI folks with pump tech to go in and open these people’s eyes and minds to something so much bigger.
I agree 100%, my symptoms were years in the making but no one knew. Thanks for getting this information out to the general public. We need to be heard, we need to be understood and we need help!!
Thank you friend...please be well ❤
I had the very same recurring dream, years before treatment. Wow.
Yes I have heard that from others as well...crazy isn't it but so interesting...our bodies and brains re amazing we just need to learn how to listen to it.
Omg, plesse keep doing these videis
THANK YOU I WILL...any suggestions for videos pleas let me know ❤
Adorable dog! ❤️
She is a sweetie...didn't want to be into video I have to work hard to get her in the back ground LOL
Thank you for sharing your experiences. It will be so helpful for someone suffering with no answers. I definitely had the symptoms at least 25 years prior to diagnosis. As well if you were born with dark skin it is even more difficult to notice the change in colour. I can remember body hair that stopped growing, seizures and doctors trying to give me all types of medication. Fortunately I did not take those medications and you are correct, it would have masked the actual disease. Thank you for all that you do. Stay blessed Jill.
Thank you my friend for sharing...it validated me and others. Please take care ❤
Your dog is beautiful ❤️
She is my BFF...she is so sweet...thank you ❤
Agreed. By sharing your story you are helping others. Put those early varied symptoms and pieces of the puzzle together...I have secondry..But had no body hair for 10 years prior to diagnosis.. fatigue. Wieght loss . No appetite.I had been diagnosed as hypo adrenal by my endo. Who i was under for cfs/ ME and hashimoto's. Strangely i had dark skin pigmentation on scars, palms hands...But passed SST. !! Endo did 4 more sst as he was convinced i had Addisons!! Passed all tests.
Year prior to diagnosis...I felt like i was dying. Zero energy. Nausea. No appetite. Abdominal pain. Painfull joints. Blurred vision. Slurred speech. Suicidal depression. Lost so much weight. Vommiting. Constipation or diahhrria. Just lay on sofa unable to do anything much....!! Kept going to see GP... who was very good but treated each symptom. And did not relate them together!! I persisted. I knew what low Cortisol felt like. So i asked for a morning cortisol test along with every other blood test going..I knew i was very ill....Dr phoned with test results. Told me they were normal!! In August. Luckily i had my annual appointment with my Endo. I felt so ill . Told Endo i had asked for morning cortisol. Endo checked results. Got very cross as Cortisol very low. Then ordered SST. Which wad done few days later and i was diagnosed. My baseline morning cortisol was 7...no wonder i felt so ill..
Over 10 years i recon my adrenals were struggling. Since i had sepsis. Then a virus triggered cfs/ ME. Then i got covid. My AI symptoms started straight after covid???
I mentioned this to my new Endo. She said she had seen other patients whose AI began after covid??? I was feeling well before Covid..
Endo felt sure my AI caused by asthma drugs? But she also said its difficult to give a definative etiology of cause..
Either way. We have the same illness. Symptoms. Take same Hydrocortisone. Feel better. But not well. Up n down. Good days low cortisol days. Just spent 2 days in bed. Zonked out...slept rested. Now feeling better....
Its the luck of the draw if you get diagnosed. As its rare..sadly many are in crisis before diagnosis. Due to lack of awareness by GP's...!!!
Can I ask you a question? I'm in the process of diagnosis for Addison's, I have all the symptoms and the symptoms have been happening for the last 15 years, though, getting significantly, rapidly worse in the last few weeks, especially the hyperpigmentation and bronzing. I literally feel like I am dying. I went to the ER a couple weeks ago because I thought I was severely dehydrated, and based on my test results and talking to the DR, he was very concerned that I have Addison's and that I needed to see an Endo, ASAP, and even called my GP the next day and told them to get me to a specialist Immediately. You mentioned that your cortisol was 7, and that your endo said that was VERY LOW. I know each lab is different, do you know the specifics of your lab? I'm curious because I have gotten my cortisol checked 9 years ago, and my cortisol at 8 in the morning was 6, and "normal" based on the lab I went to was 5. Is a cortisol of 6 at 8 am, at 22-23 years of age normal?
yes friend....so many causes that can lead the adrenals to simply have had enough trying to fight and the symptoms get worse...different causes but similar treatment...keep fighting. You got this!
@@kathleencarter828 @sandrawheeler1521
I am trying to tag Sandra for you!
@@kathleencarter828 Please get some answers asap.
I was recently diagnosed with adrenal insufficiency and im remembering back decades of symptoms that never had any answers. One question i have is can hyperpigmentation resolve and reappear over time? I also started noticing darkening of the skin around the genitals when I was young that isn't always there. I've also had a bizarre experience where multiple thumbprint sized brown spots showed up all over my torso, no pain, not raised, then they would disappear.
Hey there...here is what I know from my experience. First...my dad had addisons and was deathly ill before dx...his pigmentation never resolved over the years...her remained very very dark. Myself over time mine I think mostly went away but during times of stress and very low cortisol/crisis the darkness returns..as one point my feet were a yellowish/brown ting for months willing I was struggling. Hope that helps a bit ❤
I asked my dr about my dads dark colour he said likely his body continued to have high ACTH from the pituitary and was always in fear of low cortisol and couldn't 'shut off'..my poor daddy
Do you ever foresee a regular daily test like with diabetes and sugar that will come about with AI and the pump?? Do you ever test your sugar as well?
I really really really hope so...I think it is needed...at the very least to indicate when we are dangerously low ❤
@@chronicallyfit_withjill I know they have been working on the epi pen type of injections for years and all it just seems like we need some sort of preventative as well as rescue and obviously with the pump technology rapid testing of these levels and automation of the distribution of meds is a game changer. I think in many areas …not just AI and diabetes. When enough money, resources, scientists etc., and reusing already utilized technology is thrown at “rapid testing”, it seems we should be able to get more reliable resources available in a reasonable amount of time. Let me get off my soapbox - to say I see this guy who is always talking about new tech with diabetes and see him going into these R & D labs, factories etc and I believe you would be an amazing advocate for AI folks with pump tech to go in and open these people’s eyes and minds to something so much bigger.