When my daughter was in the hospital emergency room waiting for a diagnosis , the one thing I drilled into her was “ it’s not all in your head , if they tell you it is we know it isn’t “ she was a 20 year old young lady , they treated her as an anorexic and not at all kindly but thankfully there was one smart doctor who recognized the tan , and made the diagnoses ! I shall for ever be grateful to that doctor !
Margot's symptoms of Addison's is exactly like mine. I told my son she sounded like a carbon copy of how I felt. Only difference is I'm 70 yrs old. For probably 2 years my blood work was terrible. What was supposed to be high, mine would be low, and visa versa. So in a followup appt back on Feb 29, 2024, my doctor asked me to pull up the back of my shirt. One look at my back, she asked if I'd been going to a tanning bed. (No...never.) Then she said I have Addison's disease. I'd lost so much weight that my weight that day was 95 (from 125 a year earlier). She also was concerned because my potassium level reached an all time high at 6.9. My doctor called me at 8:00p.m. after having another potassium blood draw that day and told me I needed to go pickup a prescription that would lower my potassium. I got home and mixed the nasty stuff with water and began drinking it. I got all of it down except the last ounce before I started throwing it up. Meanwhile, the lab tech at the hospital (where the last potassium draw was sent) called and said I needed to go to the ER because I was in danger of a heart attack or death. My son came and took me to ER. They immediately did more blood work and slapped an EKG on. Told me I was in danger of a "widow maker heart attack." Hours later, the ER doctor told me I was being admitted. I had an IV in all night and the next morning I started my steroids. Almost immediately I felt 100% better. One night while in the hospital, two nurses came in my room at 3a.m. to wake me up. They said my heart monitor alert went off and they needed to check my blood pressure. The took it laying down, sitting up, and standing up. I remember asking them, "Am I dying?" They said my BP was 52/40. Immediately they put compression hose on and strapped things on my legs to massage them to prevent blood clots. Even with extremely low BP, my heart event monitor said I stayed in tachycardia (rapid heartbeat). Fast forward to coming home, I was just like Margot; I could not lay in bed to sleep because I felt like I was smothering and couldn't breathe well. I had to sleep sitting up for several weeks. Also, I was always a person who would sleep 10-12 hrs a night. After starting the steroids (Hydrocort and Fludrocort) I was unable to sleep more than 4 hrs. Just in the last week I've finally been able to sleep about 8 hrs/night, so I think my body is adjusting to the steroids. Today I went for an MRI on my adrenal glands. Said it would be about 48 hrs before the report got to my doctor. Oh I forgot to also tell you for the last 2 years I've also developed kidney disease. I'm in stage 3a kidney failure. So that's another worry of mine. Jill, I love listening to you and your guests and thank you so much for bringing Addison's disease awareness to more people. No one in my family, nor any of my friends, have ever heard of it. People need to be made more aware of it because it's practically unheard of, and it just might save a life if the symptoms were discussed more openly.
WOW...that is amazing...I am so glad you are okay and have your answers. So scary what we go through and what could happen. Keep fighting friend and thank you for your kind words. I hope Margots episodes and the others are helpful to you. Be well and keep fighting...you are not alone!
I just wanted to address the Stage 3a kidney disease (I too have Addison's btw). It's still reversible. I was in stage 3a KD for over 3 yrs, & I was doing everything I could to stay hydrated, eating only homemade food, good fats, whole grains (never candy/junk food kinda gal!). It still took a Dx of adrenal insufficiency to get my kidneys to get better. It's ALL connected! Please don't worry about your kidneys, or your liver if those labs are also a bit elevated. They'll get better when your steroids are sorted. ❤
I thank GOD!! For this podcast and RUclips channel!! 🙌😭 A friend shared your podcast with me!🙌 it has helped me SO much! This episode has me in tears!! Her story is SO similar to mine!Feeling SO many emotions! Because of the harsh reality of living with Addisons, and the comfort of hearing others that have and do experience what I have and continue to live with! Fighting every single day for LIFE!! Refusing to give UP!💪😭🙌
Jill I want you to know how much you have helped me! I have been feeling absolutely terrible! More days in bed then normal. Not being able to be engaged in my life, my life with my family. Like all of us with Addisons have prob had to do 100x over, sit and evaluate, try to problem solve! I watched several of your videos all day the other day! Which led me to asking for some specifics in my routine lab work taken yesterday 🙌 I’ve had an additional prescription of prednisone but have never used it. I started to experiment with adding that in along side my regular dosage of hydrocortisone. It has only been a few days and I can already tell a tremendous difference, an improvement in how I am sleeping and feeling!! I truly thank GOD for YOU boldly speaking out with such transparency about everything you have went through! ❤
Thank you friend...I am glad you enjoy them, I hope they are helpful and make you feel less alone and empowered to FIGHT this illness. We can do it together I know we can
Oh my!! I have had some very similar experiences! I’m currently awaiting an appointment with an endo to discuss my lifetime of symptoms… but I, too, was diagnosed with Lyme disease via igenex (the California lab) and MS AND psoriatic arthritis on my journey! (MS diagnosis was removed earlier this year as my MRIs have been stable for 6 years)…. I was diagnosed with a primary immunodeficiency 3 years ago and am on weekly infusions for that. In my gut, I KNOW something is wrong with some part of my endocrine system…. The crashing fatigue/comas, weakness, slurred speech… just so many things. But I do not have skin darkening or significant weight loss (tho I have had periods of extreme unwanted weight loss!). I suspect I may just have adrenal insufficiency and not Addison’s. I’m terrified…
Keep fighting for answers...addisons disease is primary adrenal insufficiency. Have you been tested for it? Push for ACTH blood test and ACTH stimulation test...get your answers and on the road to recovery as soon as you can...keep going friend!
@@chronicallyfit_withjillI did do a cortisol and ACTH test… but I went at 4pm and they were normal (cortisol was 10.0 and ACTH was 14.9) and I also did the anti adrenal antibodies, which was negative. I assumed that meant no adrenal issues… but was told the labs need to be drawn before 9am.
Listening to how severe your symptoms were and how long it went on before anything was done about it was more frustrating to me than funny. It’s good to have a positive attitude, but there is nothing amusing about almost dying and no one taking the symptoms seriously,
Thank you, I assure you I spent many days and night depressed and crying because no one believed me and I didn’t know know what was going on. This is the way I deal with it now. Because there have been many many days that were not funny. I have to find the happy moments when they present themselves, because even now that I have more knowledge about this illness and how to deal with it, I still feel there are more hard days than good days. ❤
@@margotgaudet7594 Awww, Margot, that sounds totally understandable. I’m so sorry for what you are going through. I wish you more good days than bad! 💕🦋☀️
@@clarissavaida4058 thank you! Finding Jill and The Pickle Jar , as well the amazing community of people that follow her has been a wonderful gift these past few months. I’ve loved all the insights I’ve gained from her interviews. It has helped immensely. But it’s still frustrating and sad when your body doesn’t work like it should or like you’d like it too, as way to many people with invisible illnesses know all about! One day at a time, and grateful for the wonderful days and new people and insights on this journey
Have Margot checked B12....no supplement of B12 for 4 to 6 months others they will be falsely high. MS is a B12 deficiency....I have done research on this. B12 shots work better than B12 supplements
My B-12 was low as well, but I began adding toasted wheat germ e/ evening before bed. It seemed to help. Plus the fiber was just enough to keep me regular w/out lowering my sodium. ❤
When my daughter was in the hospital emergency room waiting for a diagnosis , the one thing I drilled into her was “ it’s not all in your head , if they tell you it is we know it isn’t “ she was a 20 year old young lady , they treated her as an anorexic and not at all kindly but thankfully there was one smart doctor who recognized the tan , and made the diagnoses ! I shall for ever be grateful to that doctor !
Good for you for being an amazing advocate ❤️❤️❤️ we need to trust our instincts ❤️❤️❤️
Margot's symptoms of Addison's is exactly like mine. I told my son she sounded like a carbon copy of how I felt. Only difference is I'm 70 yrs old. For probably 2 years my blood work was terrible. What was supposed to be high, mine would be low, and visa versa. So in a followup appt back on Feb 29, 2024, my doctor asked me to pull up the back of my shirt. One look at my back, she asked if I'd been going to a tanning bed. (No...never.) Then she said I have Addison's disease. I'd lost so much weight that my weight that day was 95 (from 125 a year earlier). She also was concerned because my potassium level reached an all time high at 6.9. My doctor called me at 8:00p.m. after having another potassium blood draw that day and told me I needed to go pickup a prescription that would lower my potassium. I got home and mixed the nasty stuff with water and began drinking it. I got all of it down except the last ounce before I started throwing it up. Meanwhile, the lab tech at the hospital (where the last potassium draw was sent) called and said I needed to go to the ER because I was in danger of a heart attack or death. My son came and took me to ER. They immediately did more blood work and slapped an EKG on. Told me I was in danger of a "widow maker heart attack." Hours later, the ER doctor told me I was being admitted. I had an IV in all night and the next morning I started my steroids. Almost immediately I felt 100% better. One night while in the hospital, two nurses came in my room at 3a.m. to wake me up. They said my heart monitor alert went off and they needed to check my blood pressure. The took it laying down, sitting up, and standing up. I remember asking them, "Am I dying?" They said my BP was 52/40. Immediately they put compression hose on and strapped things on my legs to massage them to prevent blood clots. Even with extremely low BP, my heart event monitor said I stayed in tachycardia (rapid heartbeat). Fast forward to coming home, I was just like Margot; I could not lay in bed to sleep because I felt like I was smothering and couldn't breathe well. I had to sleep sitting up for several weeks. Also, I was always a person who would sleep 10-12 hrs a night. After starting the steroids (Hydrocort and Fludrocort) I was unable to sleep more than 4 hrs. Just in the last week I've finally been able to sleep about 8 hrs/night, so I think my body is adjusting to the steroids. Today I went for an MRI on my adrenal glands. Said it would be about 48 hrs before the report got to my doctor. Oh I forgot to also tell you for the last 2 years I've also developed kidney disease. I'm in stage 3a kidney failure. So that's another worry of mine. Jill, I love listening to you and your guests and thank you so much for bringing Addison's disease awareness to more people. No one in my family, nor any of my friends, have ever heard of it. People need to be made more aware of it because it's practically unheard of, and it just might save a life if the symptoms were discussed more openly.
WOW...that is amazing...I am so glad you are okay and have your answers. So scary what we go through and what could happen. Keep fighting friend and thank you for your kind words. I hope Margots episodes and the others are helpful to you. Be well and keep fighting...you are not alone!
I just wanted to address the Stage 3a kidney disease (I too have Addison's btw). It's still reversible. I was in stage 3a KD for over 3 yrs, & I was doing everything I could to stay hydrated, eating only homemade food, good fats, whole grains (never candy/junk food kinda gal!). It still took a Dx of adrenal insufficiency to get my kidneys to get better. It's ALL connected!
Please don't worry about your kidneys, or your liver if those labs are also a bit elevated. They'll get better when your steroids are sorted. ❤
I love Margot's energy! Despite everything she has been through, she's still incredibly strong and has a positive outlook on life
She is a fighting!!!!!!!!!!! Thank you for watching and the comment
I thank GOD!! For this podcast and RUclips channel!! 🙌😭
A friend shared your podcast with me!🙌 it has helped me SO much! This episode has me in tears!!
Her story is SO similar to mine!Feeling SO many emotions! Because of the harsh reality of living with Addisons, and the comfort of hearing others that have and do experience what I have and continue to live with! Fighting every single day for LIFE!! Refusing to give UP!💪😭🙌
Jill I want you to know how much you have helped me! I have been feeling absolutely terrible! More days in bed then normal. Not being able to be engaged in my life, my life with my family. Like all of us with Addisons have prob had to do 100x over, sit and evaluate, try to problem solve! I watched several of your videos all day the other day! Which led me to asking for some specifics in my routine lab work taken yesterday 🙌 I’ve had an additional prescription of prednisone but have never used it. I started to experiment with adding that in along side my regular dosage of hydrocortisone. It has only been a few days and I can already tell a tremendous difference, an improvement in how I am sleeping and feeling!! I truly thank GOD for YOU boldly speaking out with such transparency about everything you have went through! ❤
Thank you friend...I am glad you enjoy them, I hope they are helpful and make you feel less alone and empowered to FIGHT this illness. We can do it together I know we can
@@amandasosebee4412 Keep fighting, asking questions and finding what best suits you! Thank you for your kind words friend.
Oh my!! I have had some very similar experiences! I’m currently awaiting an appointment with an endo to discuss my lifetime of symptoms… but I, too, was diagnosed with Lyme disease via igenex (the California lab) and MS AND psoriatic arthritis on my journey! (MS diagnosis was removed earlier this year as my MRIs have been stable for 6 years)…. I was diagnosed with a primary immunodeficiency 3 years ago and am on weekly infusions for that. In my gut, I KNOW something is wrong with some part of my endocrine system…. The crashing fatigue/comas, weakness, slurred speech… just so many things. But I do not have skin darkening or significant weight loss (tho I have had periods of extreme unwanted weight loss!). I suspect I may just have adrenal insufficiency and not Addison’s. I’m terrified…
Keep fighting for answers...addisons disease is primary adrenal insufficiency. Have you been tested for it? Push for ACTH blood test and ACTH stimulation test...get your answers and on the road to recovery as soon as you can...keep going friend!
@@chronicallyfit_withjillI did do a cortisol and ACTH test… but I went at 4pm and they were normal (cortisol was 10.0 and ACTH was 14.9) and I also did the anti adrenal antibodies, which was negative. I assumed that meant no adrenal issues… but was told the labs need to be drawn before 9am.
Thank you so much what wonderful lady's ❤ it really makes me so sad that all the symptoms and no help until near death
She is amazing...such a FIGHTER...true inspiration.
I understand only to well. You explained it well!! It took 10 years from symptoms to diagnosis for me. I was diagnosed in 1998 at age 36.
Thank you both so much for this video! I'm at the stage where I think I need to go sooner to the hospital because my Appointment not till May 1 st. ❤
I hope it was helpful. Margot is amazing....please take care friend!
Thankyou for this podcast
Great episode. Margot's story is common. Thank you for watching and for the comment!
Boy, do I understand!!!!
Yes we do friend...do not we!!!
Listening to how severe your symptoms were and how long it went on before anything was done about it was more frustrating to me than funny. It’s good to have a positive attitude, but there is nothing amusing about almost dying and no one taking the symptoms seriously,
Thank you, I assure you I spent many days and night depressed and crying because no one believed me and I didn’t know know what was going on. This is the way I deal with it now. Because there have been many many days that were not funny. I have to find the happy moments when they present themselves, because even now that I have more knowledge about this illness and how to deal with it, I still feel there are more hard days than good days. ❤
@@margotgaudet7594 Awww, Margot, that sounds totally understandable. I’m so sorry for what you are going through. I wish you more good days than bad! 💕🦋☀️
@@clarissavaida4058 thank you! Finding Jill and The Pickle Jar , as well the amazing community of people that follow her has been a wonderful gift these past few months. I’ve loved all the insights I’ve gained from her interviews. It has helped immensely. But it’s still frustrating and sad when your body doesn’t work like it should or like you’d like it too, as way to many people with invisible illnesses know all about! One day at a time, and grateful for the wonderful days and new people and insights on this journey
Most Drs are truly horrible, pill pushers that are master gaslighters
Have Margot checked B12....no supplement of B12 for 4 to 6 months others they will be falsely high. MS is a B12 deficiency....I have done research on this. B12 shots work better than B12 supplements
I let her know to check out her comments on her videos!! Thank you!
My B-12 was low as well, but I began adding toasted wheat germ e/ evening before bed. It seemed to help. Plus the fiber was just enough to keep me regular w/out lowering my sodium. ❤
UVB does not go through glass. So no tanning inside with closed windows.