@SaraMichaels no idea why I didn’t see this until now 🤣 Honestly having them communicate together is a game changer! I haven’t been back in years but still the initial trip was so helpful! 🙏💕🥄
I work at one of the major clinics (in research) and am having a nightmare of a time... finally I am getting some traction because I sought out a doctor who is the dad of a childhood friend... Which shouldn't be necessary... But he knew me for years as a kid and sees me as a person, and knows I'm not just "anxious" and "depressed" ... Now I'm being checked for porphyria etc and found out I'm having many hypoglycemic bouts ... So ...it's wild sometimes.... I see people coming from internationally and out of state and have been ignored for years as an employee with employee insurance :-/ it's so weird
@@puddlesplasher7 I’m so deeply sorry to hear it was so difficult for you to get in! I think the only reason they actually brought me in was due to my irregular dhea numbers, they were off the chart! I hope you’re able to get some answers and the support you need! 🙏❤️🥄
oh my gosh . . . only an hour of sleep for a month. gah! so frustrating when you get the run-around. SO HAPPY you were able to get in to the Mayo clinic!
Sara Michaels it was pretty maddening at the time - but now I look back and think it’s pretty hilarious. Beyond grateful to have made it to the Mayo Clinic as well! Thank you for your kind words - sending love!
Thank you for making videos about this, I'm newly diagnosed and all the stuff is new and a bit scary, even. Sorry if my text is a bit off, English isn't my first language. I was diagnosed with the secondary form of Addison's a bit over a month ago. I had been diagnosed with a pituitary condition years prior, but the hypocortisolism was found only until now. I was almost completely bedridden and ready to give up, and then I had my labwork back. My cortisol and ACTH levels were both low, and I was able to find quite a lot of good information about this. Luckily, because I also got a call from a doctor who told me to get to the ER immediately 😄 I already knew about Addison’s crisis and it’s symptoms, so I didn’t completely freak out when I got the call. They started me on hydrocortison and I started to feel better almost instantly. I still haven’t figured out the correct stress dosing for me and the fatigue still creeps in every now and then, but the constant headache is gone, I can walk again without feeling like I’m going to pass out and can do some chores around the house. My first appointment with an endochrinologist is next week and we’ll probably check if my pituitary gland is messing up some other hormones too. I know that it is now messing up my thyroid and cortisol levels, so it very well might be doing that to some other hormones too. Even though all this is new and scary, I'm mostly just happy that I'm not feeling like absolute crap all the time. I have a past with mental health issues, so at first I thought that I had fatigue because of that. When I almost fainted when getting one floor up the stairs, I started to think that this can't be all in my head. Ironically, my psychiatrist was the one doctor who understood me and ordered me to get my bloodwork. After the results were off, they referred me to an endochrinologist who then called me and sent me to the ER. Thank you again for your videos, I subscribed. Wish you all the best with your struggle with all of this!
I have 100% of the Addison symptoms. The extreme fatigue, daily headaches, drop in blood pressure upon standing and pounding heart, etc…I don’t have the tan but I do have a decent amount of hyperpigmentation. For the first time in my life, I’ve actually been having very negative thoughts. I’m scared to think of what I’d do if I didn’t have children to care for. They keep me emotionally grounded. However, I’m beyond miserable and can’t fathom feeling this way the rest of my life. I have Graves disease but that’s not what’s wrong with me I just know. My thyroid has been removed and my numbers came back normal for the first time a few months back, since 4 years ago when I first found I have Graves. Anyway, I’m so glad you have had answers and I hope you’re doing well now too. I’ve never asked anyone to pray for me before, until today, but if anyone reads this, please say a prayer for me if you’re a praying person. I really need it. I just have to have faith the endocrinologist I’m going to see in February finds out what’s wrong with me. I genuinely hope anyone who is searching for answers like I am, finds them. It’s truly terrible to feel this way. I feel like I should be writing goodbye letters to my loved ones.
@huisio I’m just seeing this now! I’m so sorry you’ve been navigating all of this! How have you been feeling lately? How’s stress dosing going? Do you have an Endo who is supporting you now? 🙏❤️🥄
@@BS-dq1kz I understand I got Addison’s disease told me in the hospital and I’m not being treated. I have not been treated for seven months and it’s been horrible. I’m exhausted and drained lay on the couch every day do my dishes I gotta lay down take care of my dogs. I gotta lay down my back, kills me all the time and my head bothers me with headaches sometimes I can’t sleep. It’s just been nothing but a nightmare and I’m going to a regular doctor. I don’t even know if I will get the kind of doctor that you’re going to, but I will say a prayer for you because I do believe in prayer, I know that Jehovah God is the one the Almighty he hears prayers and he can help you and me too so I pray to him to help you get the help you need through his son Jesus Christ I pray he helps us both my heart goes out to you😪💕
Your story is just FANTASTIC! And confirms what I have known for years about diet/nutrition. You are absolutely an inspiration! I think I have possibly been dealing with this for decades. But I started tweaking the diet decades ago too...And my family thought I was insane. Made fun of me..then started attacking me about it. I eat virtually no sugar. No packaged, processed , ...etc...if I can help it. Eat organic as much as possible. Cut wheat out. No pasta, little to no bread , almost nothing fried. etc, etc,etc...They found that all very strange and threatening somehow 20+ years ago. Now they are all sick...but so am I...but like I said..maybe was somewhat then.
Y Z I am so touched by your sweet words - thank you so deeply! I’m so proud of you for advocating your health and nutrition needs despite what others think. It can be so overwhelming when others don’t hear what your saying about food - and even feel a bit like they are not being supportive - but the best thing to do is just anchor into what you know you need and do what is best for you. Nutrition plays a HUGE role in all bodies and illnesses. I know it doesn’t always show the same results and it can be really hard to transition into - but it is so worth it to fuel right. Sending you so much light and love my friend ❤️🙏
Thank you for this video!! Fortunately I was diagnosed immediately by my local ER doctor after my PCP didn’t figure it out for months as I got worse and worse. The ER doctor was young and fresh out of medical school and he said it was a classic medical school case and recognized it right away! I got the proper treatment in the hospital and have a decent endocrinologist (although I definitely feel like I know a bit more about Addison’s now than they do, which seems like a common occurrence in our world, lol!). I’m on circadian dosing of around 25-30mg hydrocortisone spread out over 6-7 doses per day in addition to 0.1mg fludrocortisone and 25mg dhea in the morning (my DHEAS and testosterone were both 3 on my blood test which is ridiculously low as you know, lol). I’m six weeks post diagnosis and doing great thus far! Glad to know we’re not alone! ❤️
eustacia42 oh wow! It sounds like you’ve got this going great! So glad your ER was able to set you up and diagnose you right away. Sending you so much light and love along this journey! ❤️🙏
Thank God you got the help you needed. My cortisol level is 0.4 and I am set up with an endocrinologist in 2 months. I am worried because of my cortisol level. Thank you for your story!
@@graceking8729 I’m so sorry to hear your going through this! You should see if you can get into another endocrinologist sooner. Check out the NADF Dr map to see if there is another one in your area: www.nadf.us/patient-recommended-doctors.html
Thank you for your interview I was diagnosed of having Addison’s disease seven months ago in the hospital and I’m not on any medication right now. I got to do bloodwork tomorrow for cortisol check and I am so scared that I won’t get the right medication if I have to have it and I have to go through the clinic and I’m very scared but it has been excruciating nightmare of exhaustion laying on the couch my back hurts all the time my head bothers me. I have to lay down all the time very weak. Don’t have no normal life none whatsoever but I’m praying that I will get the right help. I’m scared I really don’t want to get on that medication because I’m afraid if I screw up, I’ll be in big trouble and I’m afraid they won’t give me the right medication or the right amount. Anyway, I appreciate your video and many others. This is really a horrible thing to have to live with. God bless you. I’m glad you are doing good I need all the help I can get.
@user-vk4vw4le1c I’m so sorry to hear you’re dealing with all this. How did your test go? Why do you think they won’t give you steroids? If you’ve been dx with Addison’s your body needs cortisol replacement to function. Without it your body will not be able to function and will absolutely be causing the symptoms you describe. I hope the test resulted in getting you started on your cortisol replacement asap! 🙏❤️🥄
@@SeaSpriteSpoonie thank you yeah I don’t know. I hope I get the help I need to get better you’re right I think it’s the only thing that will make anything any better it’s just horrible living like this every day feeling like this every day I want what my body needs what God wants me to havethank you so much
I have been trying to get into and endo for 7 months. I had a right adrenalectomy in 2o20 and found out 7 months ago my body isnt producing any cortisol. All i have been given is 20mg of hydrocortisone a day. I told my wife we need to dri e to jacksonville, i literaly feel like im going to die everyday
@jamesward3622 I’m so sorry you’re feeling this way. How have you been splitting the 20mg dose through out the day? I went to the Rochester Mayo Clinic, it was a game changer! 🙏💕🥄
Ellenor Malik thank you so deeply for sharing that - because I do feel that every day I’m so lucky to move and be present in this current form of life. One spoon at a time 🥰 light and love 🙏❤️
@@SeaSpriteSpoonie I've a folk-etymology hypothesis on the term "spoons": if I'm right (and I'm not) it arises on the fact of a disabled person being less likely than a nondisabled person to have a fully washed set of cutlery, or the ability to fabricate the same from dirty cutlery, at any given time. I know this is true for me because usually when I'm feeling worse there's less spoons in the cutlery pan.
Ellenor Malik so I don’t fully understand - but that’s mostly because I’m out of it at the moment - but I love that you’re zeroing in on this. Sending light and love ❤️🙏
thank you for your video I am needing to go to the Mayo clinic too.. I am secondary AI but they still think something else is wrong like I am Cushings too. totally weird
Passions of A Cowgirl so important to listen to your body and trust your gut. The Mayo definitely was a game changer for me - and hopefully you can find what answers you need too. Sending so much light and love ❤️🙏🥄
Thank you for sharing :) Can you share the stress dosing information they gave you? That has been one of the biggest things I've struggled with since my Addison's diagnosis in 2018. My endo has made me fell so scared to take more steroids then he prescribed.
Rae Waddington absolutely! Here is the stress dosing document I reference and use so often off the National Adrenal Disease Foundation site: www.nadf.us/tools/NADF_Stress_Dosing.pdf Sending light and love ❤️🙏
I've had antibodies for several years now just watching and watching for Addison's to kick in big time. The problem is I'm 66 and hope my Drs don't say if you were 60 we'd just let it go and you can struggle on 😱
@@sharonmordain4184 I’m so sorry you’re dealing with the limbo pre diagnosis, but please reach out if you do end up with Addison’s! Honestly so many Drs have terrible bedside manor, one way to try and avoid that is to check out the NADF patient recommended Dr map, which has medical professionals that individuals with adrenal disease recommend: www.nadf.us/patient-recommended-doctors.html 🙏❤️🥄
I'm only a minute into the video but I have the same issues with my current endo... only prescribed cortisol, doesn't give information, etc... aaah! So glad this video was made otherwise I wouldn't have known information! I get dehydrated a lot (I drink sooo much gatorade).
By any chance are you in New York? I have an endocrinologist that I feel like he's shrugging me off and not taking me seriously. He does not specialize in Addison's or adrenal insufficiency. He has a one star review on Google! Anyways I'm terrified of not finding a better endocrinologist. I'm worried about losing my job and my car.
@@sanch068 I’m actually in Texas. I’m so sorry you’re dealing with that, you should definitely find an Endocrinologist who is knowledgeable and able to support you. Check out the NADF patient recommended Dr map: www.nadf.us/patient-recommended-doctors.html 🙏❤️🥄
@micuzzu just seeing this now! So I’m on hydrocortisone, 20mg a day split up into 3 doses. 10mg at 7am, 5mg at 12pm and 5mg at 5pm. I haven’t had my levels done in the last six months but I’m mostly stable at the moment, aside from some low cortisol mornings. 🙏❤️🥄
This sheet is from the National Adrenal Disease Foundation - and they have so many other amazing files under their “Tools for Life” Check it all out - it’s so amazing! www.nadf.us/tools/NADF_Stress_Dosing.pdf Light, love & all the spoons ❤️🙏🥄
Would you please share more information about the medication changes they made for you? Also the names of the various MDs would be greatly appreciated. I am suffering & unable to get to Minnesota I’d really appreciate some concrete info I can share with the specialists I’m being tx’ed by at Duke. I am acutely aware that “x” amount of Med is by no means directly transferable to another person but more info would be life changer Thank you much 🙏
Hello! It is so nice to meet you. I just watched a couple of your videos. I appreciate 🙏 you and your videos. Thank you. I do have a question. Did/do you have nodules all over your thyroid? Blessings and love. I hope you stay safe during these crazy times 🙏 🤗
Hello Heather! So happy you’re here :) I do not have anything on my thyroid at this time. I continually get things checked every year to keep updated on how it looks. Do you have some? Sending light and love ❤️🙏
@@SeaSpriteSpoonie Thank you for the warm welcome! 😍 That's good to hear that you have nothing on your thyroid. 👍 Yes. I have nodules all over my thyroid. One nodule may be causing toxicity. Getting a thyroid scan very soon. I was wondering what may have caused so many but my new endocrinologist says that she has patients that have the same issue and that their nodules are ok. I just had my follow up today via Zoom video. I guess they won't be doing any biopsies at this time. I was concerned because of the number of nodules and they are multiplying and growing. Didnt know if other patients got that many or not. Thank you. I look forward to seeing more of your videos. Thank you again so much for the videos and for helping people. Many hugs, love and light ❤
Heather Hartman for some reason my phone won’t let me load your full comment - however I do see that you do have nodules on your thyroid. I apologize if you already said this, but could you share a bit about what that is like or how you figured it out? Sending light and love ❤️
@@SeaSpriteSpoonie It's ok. 🤗 thank you for responding. I found out through an MRI for my head and neck because my arm went numb a couple years back. Thats when they found the nodules. And other things. I just had a video appt with my Endocrinologist. She said that many of her patients have many nodules and that I shouldn't worry. Honestly I've never heard of one having THAT many nodules but she knows I'm having symptoms of some kind of Endocrine like disorder. So I have to go in and have early morning cortisol testing and a thyroid scan withing the month. Problems swallowing off and on also on top of more weight loss, sore and swollen lymph nodes, anxiety, etc. Not to mention always being bone tired exhausted...and I don't work. The full widespread layered body pain has been hell on earth.
@@SeaSpriteSpoonie Sending lots of love and light. Thank you for reading and responding to my comments and for helping many people. You're a great person and I'm glad i met you. Blessings always to good/better health 🙏
I still haven't done the STIM test and probably won't ever. My doctor told me it wasn't a risk she was willing to take and neither am I lol. I'm still fighting to get the emergency shot though :(
Andrea I’m so sorry you haven’t been able to get your emergency injection yet! There are some documents on the injection you can share with your doctor on the NADF website that might help, I’ll include the link: www.nadf.us/uploads/1/3/0/1/130191972/emergency_injection_kit_instructions.pdf Sending light and love ❤️🙏
Ellenor Malik going to the clinic was one of the best choices I ever made on my personal journey. Wouldn’t change it for a second. Sending light and love ❤️🙏
MrNotSoPerfect my first rule of thumb is that I pretty much just drink water all day long. Almost a gallon and a half a day. I carry a growler of water around typically, to help me measure my intake. I also put pink salt in my water to help the water stay in my system. I am also a huge fan of Epsom salt baths - this is literally absorbing water into your body - while relaxing!!! It’s the perfect combo! I tend to eat salt through out the day as well which also helps me stay hydrated 🙏
My steroids are messed up as well wish I could find a good endocrinologist I hardly ever sleep and I've had two total hip replacements and I'm only 37 keep up videos and thanks for responding
Wait? WHAT??? Breathing trouble? Im having problems breathing, chest pains, trouble with my arms and legs, where can I find all the symptoms?? Im sleeping less than 2 hrs a night- I need help.
Hi, thank you for your video. I need your help ASAP, I'm looking for someone who can help me with the Addison's disease. Did you go to the Mayo Clinic in Rochester NY or Rochester MN ? Thank you for your help.
Jennie Kapadia I went to the Rochester one - this is the endocrine specialist location so they were on top of their game and I highly recommend it! Sending lots of light and love ❤️🙏
Robert Shay so actually I have not - I know this isn’t the norm with many on steroids but I actually have a hard time keeping weight on consistently. I fluctuate 5-10lbs almost every month. I eat a lot of coconut oil and fat bombs to help try to regulate, but I think that due to my fast paced and busy life schedule and work, my body is constantly metabolizing. I also think I have another underlying autoimmune disease which may play a role in this - but still uncovering things as they come along. I know most with steroid use are gaining and having a hard time losing - what seems to be the case for you?
@@SeaSpriteSpoonie since I have not been feeling good after being diagnosed with addisons my endocrinologist had me tested for very high chained fatty acids and tested positive for adrenomyeloneuropathy. 70% of people with this have addisons.(men) there are women who also have this but mostly men. I see a neurologist in may.
Robert Shay I’m so sorry you are still feeling unwell - but it sounds like you have a plan to work toward answers. Sending you all the love and strength as you continue to uncover what is happening in your body. Remember to listen to yourself and give your body the love, attention and rest it needs ❤️🙏
@@kathya1956 I actually was diagnosed in Texas, but unfortunately my Endocrinologist wasn’t very knowledgeable. My health continued to decline and about 8 months after my dx of Addison’s my numbers were so off the chart that I reached out to the Mayo Clinic and they invited me down asap. It was once I was there that I was fully assessed, trained and treated for my Addison’s and other conditions and was able to start to regulate thanks to their help. 🙏❤️🥄
Claiming you survived because you ate well is just an assumption. I wouldn’t advise people who might not want to take steroids to eat well and they’ll be fine. Surely if you had been eating only McDonalds every day you would have been in bad shape. Anyhow, I don’t mean to minimize your beliefs regarding why you survived. I just want to make sure people do what they need to, as this is very serious. As you know. I had spent nearly two years trying to figure out why I had extreme muscle fatigue, had muscle cramps constantly, was not able to hold the phone to my ear for more than minute, would shake constantly, had lost a great deal of weight, was suffering from incredible paranoia, and I had even fallen in love, which may have also been a symptom. I had strange puffy knees, especially when I woke up in the am. I had a bald spot form behind my left ear. I also had these strange black dots form on my lower legs. During this period my blood was abnormal. I had super low platelets which left me covered in bruises. I’d have low white blood cell counts, and nearly zero testosterone too. What ultimately led to my Addisons diagnoses was when I went to the hospital to have a muscle biopsy and on the operating otable I had an extreme reaction to the anesthesia which caused my blood pressure to skyrocket, so much so that I almost died on the spot. After this event I was tested for cortisol and that’s how I finally found out what was causing all my problems. The doctor said I would have died had they not found out then what my problem was. In the tests that followed it was found that I had a massive tumor on one of my kidneys. I had also found a squamous carcinoma that isn’t all that uncommon with people dependent on hydrocortisone. I now have symptoms of lymphoma which is also a possibility in people who take hydrocortisone every day. I hope the doctors have informed you of these things. I’m sure they have as you are aware that we will probably not live a full life. People who have had organ transplants are required to take hydrocortisone every day too as it suppresses the immune system. I suspect that’s why it’s important to dose yourself properly. I’m terrible with taking my meds on time, often forgetting until the afternoon. I often forget whether I even took my meds so I end up taking them again. With your experiences how long had you suffered before your diagnosis? What were your symptoms? Do you know of any event that might have caused you this disease? I think I may have gotten it from a bathtub in a fancy hotel in Vienna Austria. I had shaved in the tub, having cut myself, and then turned on water jets, which spit out black chunks of slime. Whatever was in that water was now in my bleeding cuts. I developed within a couple of weeks a super nasty and bloody rash in my moist groin area. The doctors couldn’t figure out what had caused it, although after the fact it was clear my body didn’t respond to the infection as it should have. Whether this was the cause or not is just my opinion. I hope you’re doing well and appreciate that you’re putting your story here on YT. All the best.
B bo totally hear you - and honestly at the end of the day there really is no telling how my body survived as long as it had. I definitely don’t condone anyone only focusing on diet instead of steroids - and my apologies if that was what came across. It sounds like you had quite the journey and I’m so grateful they were finally able to figure it out! It’s so scary how close we can come to life or death and doctors still uncertain. Very grateful you received the diagnoses and treatment to move forward. My addisons is autoimmune based and we aren’t exactly sure where things started. Was “sick” my whole life - and my great grandmother had Addison’s as well. I experienced extreme stages of manic behavior, fatigue, joint pain, insomnia, inability to digest food and such low blood pressure that I was constantly blacking out and fainting. Major symptoms persisted and grew in my early 20s and by 23 I felt completely out of my mind and as if I was dying. Took about 5 years and 1 very serious rest of constant research, drs and investigating my health to get to the bottom of it. Thank you so much for sharing your story - sending you light and love ❤️🙏
@@kathya1956 it certainly can for some people, depending on the situation it can be a rapid onset for some. That’s the amazing thing about adrenal insufficiency, there is no one size fits all. Especially due to all other medical conditions that individuals may have. 🙏❤️🥄
the disconnect in all the other clinics is frustrating - it's awesome to hear that they all work together!
@SaraMichaels no idea why I didn’t see this until now 🤣
Honestly having them communicate together is a game changer! I haven’t been back in years but still the initial trip was so helpful!
🙏💕🥄
I work at one of the major clinics (in research) and am having a nightmare of a time... finally I am getting some traction because I sought out a doctor who is the dad of a childhood friend... Which shouldn't be necessary... But he knew me for years as a kid and sees me as a person, and knows I'm not just "anxious" and "depressed" ... Now I'm being checked for porphyria etc and found out I'm having many hypoglycemic bouts ... So ...it's wild sometimes.... I see people coming from internationally and out of state and have been ignored for years as an employee with employee insurance :-/ it's so weird
@@puddlesplasher7 I’m so deeply sorry to hear it was so difficult for you to get in! I think the only reason they actually brought me in was due to my irregular dhea numbers, they were off the chart! I hope you’re able to get some answers and the support you need! 🙏❤️🥄
oh my gosh . . . only an hour of sleep for a month. gah! so frustrating when you get the run-around. SO HAPPY you were able to get in to the Mayo clinic!
Sara Michaels it was pretty maddening at the time - but now I look back and think it’s pretty hilarious. Beyond grateful to have made it to the Mayo Clinic as well! Thank you for your kind words - sending love!
❤❤❤
Thank you for making videos about this, I'm newly diagnosed and all the stuff is new and a bit scary, even. Sorry if my text is a bit off, English isn't my first language.
I was diagnosed with the secondary form of Addison's a bit over a month ago. I had been diagnosed with a pituitary condition years prior, but the hypocortisolism was found only until now. I was almost completely bedridden and ready to give up, and then I had my labwork back. My cortisol and ACTH levels were both low, and I was able to find quite a lot of good information about this. Luckily, because I also got a call from a doctor who told me to get to the ER immediately 😄 I already knew about Addison’s crisis and it’s symptoms, so I didn’t completely freak out when I got the call. They started me on hydrocortison and I started to feel better almost instantly.
I still haven’t figured out the correct stress dosing for me and the fatigue still creeps in every now and then, but the constant headache is gone, I can walk again without feeling like I’m going to pass out and can do some chores around the house. My first appointment with an endochrinologist is next week and we’ll probably check if my pituitary gland is messing up some other hormones too. I know that it is now messing up my thyroid and cortisol levels, so it very well might be doing that to some other hormones too.
Even though all this is new and scary, I'm mostly just happy that I'm not feeling like absolute crap all the time. I have a past with mental health issues, so at first I thought that I had fatigue because of that. When I almost fainted when getting one floor up the stairs, I started to think that this can't be all in my head. Ironically, my psychiatrist was the one doctor who understood me and ordered me to get my bloodwork. After the results were off, they referred me to an endochrinologist who then called me and sent me to the ER.
Thank you again for your videos, I subscribed. Wish you all the best with your struggle with all of this!
I have 100% of the Addison symptoms. The extreme fatigue, daily headaches, drop in blood pressure upon standing and pounding heart, etc…I don’t have the tan but I do have a decent amount of hyperpigmentation.
For the first time in my life, I’ve actually been having very negative thoughts. I’m scared to think of what I’d do if I didn’t have children to care for. They keep me emotionally grounded. However, I’m beyond miserable and can’t fathom feeling this way the rest of my life. I have Graves disease but that’s not what’s wrong with me I just know. My thyroid has been removed and my numbers came back normal for the first time a few months back, since 4 years ago when I first found I have Graves.
Anyway, I’m so glad you have had answers and I hope you’re doing well now too. I’ve never asked anyone to pray for me before, until today, but if anyone reads this, please say a prayer for me if you’re a praying person. I really need it.
I just have to have faith the endocrinologist I’m going to see in February finds out what’s wrong with me.
I genuinely hope anyone who is searching for answers like I am, finds them. It’s truly terrible to feel this way. I feel like I should be writing goodbye letters to my loved ones.
@huisio I’m just seeing this now! I’m so sorry you’ve been navigating all of this! How have you been feeling lately? How’s stress dosing going? Do you have an Endo who is supporting you now?
🙏❤️🥄
@@BS-dq1kz I understand I got Addison’s disease told me in the hospital and I’m not being treated. I have not been treated for seven months and it’s been horrible. I’m exhausted and drained lay on the couch every day do my dishes I gotta lay down take care of my dogs. I gotta lay down my back, kills me all the time and my head bothers me with headaches sometimes I can’t sleep. It’s just been nothing but a nightmare and I’m going to a regular doctor. I don’t even know if I will get the kind of doctor that you’re going to, but I will say a prayer for you because I do believe in prayer, I know that Jehovah God is the one the Almighty he hears prayers and he can help you and me too so I pray to him to help you get the help you need through his son Jesus Christ I pray he helps us both my heart goes out to you😪💕
Your story is just FANTASTIC! And confirms what I have known for years about diet/nutrition. You are absolutely an inspiration! I think I have possibly been dealing with this for decades. But I started tweaking the diet decades ago too...And my family thought I was insane. Made fun of me..then started attacking me about it. I eat virtually no sugar. No packaged, processed , ...etc...if I can help it. Eat organic as much as possible. Cut wheat out. No pasta, little to no bread , almost nothing fried. etc, etc,etc...They found that all very strange and threatening somehow 20+ years ago. Now they are all sick...but so am I...but like I said..maybe was somewhat then.
Y Z I am so touched by your sweet words - thank you so deeply! I’m so proud of you for advocating your health and nutrition needs despite what others think. It can be so overwhelming when others don’t hear what your saying about food - and even feel a bit like they are not being supportive - but the best thing to do is just anchor into what you know you need and do what is best for you. Nutrition plays a HUGE role in all bodies and illnesses. I know it doesn’t always show the same results and it can be really hard to transition into - but it is so worth it to fuel right. Sending you so much light and love my friend ❤️🙏
Thank you for this video!! Fortunately I was diagnosed immediately by my local ER doctor after my PCP didn’t figure it out for months as I got worse and worse. The ER doctor was young and fresh out of medical school and he said it was a classic medical school case and recognized it right away! I got the proper treatment in the hospital and have a decent endocrinologist (although I definitely feel like I know a bit more about Addison’s now than they do, which seems like a common occurrence in our world, lol!). I’m on circadian dosing of around 25-30mg hydrocortisone spread out over 6-7 doses per day in addition to 0.1mg fludrocortisone and 25mg dhea in the morning (my DHEAS and testosterone were both 3 on my blood test which is ridiculously low as you know, lol). I’m six weeks post diagnosis and doing great thus far! Glad to know we’re not alone! ❤️
eustacia42 oh wow! It sounds like you’ve got this going great! So glad your ER was able to set you up and diagnose you right away. Sending you so much light and love along this journey! ❤️🙏
Thank God you got the help you needed. My cortisol level is 0.4 and I am set up with an endocrinologist in 2 months. I am worried because of my cortisol level. Thank you for your story!
@@graceking8729 I’m so sorry to hear your going through this! You should see if you can get into another endocrinologist sooner. Check out the NADF Dr map to see if there is another one in your area: www.nadf.us/patient-recommended-doctors.html
Thank you for your interview I was diagnosed of having Addison’s disease seven months ago in the hospital and I’m not on any medication right now. I got to do bloodwork tomorrow for cortisol check and I am so scared that I won’t get the right medication if I have to have it and I have to go through the clinic and I’m very scared but it has been excruciating nightmare of exhaustion laying on the couch my back hurts all the time my head bothers me. I have to lay down all the time very weak. Don’t have no normal life none whatsoever but I’m praying that I will get the right help. I’m scared I really don’t want to get on that medication because I’m afraid if I screw up, I’ll be in big trouble and I’m afraid they won’t give me the right medication or the right amount. Anyway, I appreciate your video and many others. This is really a horrible thing to have to live with. God bless you. I’m glad you are doing good I need all the help I can get.
@user-vk4vw4le1c I’m so sorry to hear you’re dealing with all this. How did your test go? Why do you think they won’t give you steroids? If you’ve been dx with Addison’s your body needs cortisol replacement to function. Without it your body will not be able to function and will absolutely be causing the symptoms you describe. I hope the test resulted in getting you started on your cortisol replacement asap!
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@@SeaSpriteSpoonie thank you yeah I don’t know. I hope I get the help I need to get better you’re right I think it’s the only thing that will make anything any better it’s just horrible living like this every day feeling like this every day I want what my body needs what God wants me to havethank you so much
@@SheilaMore-l4v hope they get you squared away asap! Check out nadf.us to see their dr Map if you need another Endo rec!
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I have been trying to get into and endo for 7 months. I had a right adrenalectomy in 2o20 and found out 7 months ago my body isnt producing any cortisol. All i have been given is 20mg of hydrocortisone a day. I told my wife we need to dri e to jacksonville, i literaly feel like im going to die everyday
@jamesward3622 I’m so sorry you’re feeling this way. How have you been splitting the 20mg dose through out the day? I went to the Rochester Mayo Clinic, it was a game changer!
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10:19 You are a testament to the resilience of the human body.
Ellenor Malik thank you so deeply for sharing that - because I do feel that every day I’m so lucky to move and be present in this current form of life. One spoon at a time 🥰 light and love 🙏❤️
@@SeaSpriteSpoonie I've a folk-etymology hypothesis on the term "spoons": if I'm right (and I'm not) it arises on the fact of a disabled person being less likely than a nondisabled person to have a fully washed set of cutlery, or the ability to fabricate the same from dirty cutlery, at any given time. I know this is true for me because usually when I'm feeling worse there's less spoons in the cutlery pan.
Ellenor Malik so I don’t fully understand - but that’s mostly because I’m out of it at the moment - but I love that you’re zeroing in on this. Sending light and love ❤️🙏
thank you for your video I am needing to go to the Mayo clinic too.. I am secondary AI but they still think something else is wrong like I am Cushings too. totally weird
Passions of A Cowgirl so important to listen to your body and trust your gut. The Mayo definitely was a game changer for me - and hopefully you can find what answers you need too. Sending so much light and love ❤️🙏🥄
Thank you for sharing :) Can you share the stress dosing information they gave you? That has been one of the biggest things I've struggled with since my Addison's diagnosis in 2018. My endo has made me fell so scared to take more steroids then he prescribed.
Rae Waddington absolutely! Here is the stress dosing document I reference and use so often off the National Adrenal Disease Foundation site:
www.nadf.us/tools/NADF_Stress_Dosing.pdf
Sending light and love ❤️🙏
I've had antibodies for several years now just watching and watching for Addison's to kick in big time. The problem is I'm 66 and hope my Drs don't say if you were 60 we'd just let it go and you can struggle on 😱
@@sharonmordain4184 I’m so sorry you’re dealing with the limbo pre diagnosis, but please reach out if you do end up with Addison’s! Honestly so many Drs have terrible bedside manor, one way to try and avoid that is to check out the NADF patient recommended Dr map, which has medical professionals that individuals with adrenal disease recommend: www.nadf.us/patient-recommended-doctors.html
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LUCKY YOU'. many many are dying to get what you did.
I'm only a minute into the video but I have the same issues with my current endo... only prescribed cortisol, doesn't give information, etc... aaah! So glad this video was made otherwise I wouldn't have known information! I get dehydrated a lot (I drink sooo much gatorade).
Cameryn, I am so glad you found it helpful and I hope it can support you along your Journey! Light and love ❤️🙏
Do you mind sharing which endocrinologist you saw at Mayo?
@christinbaird5182 I saw Dr Irina Bancos. She is the best Endocrinologist I’ve worked with at this point.
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Vanessa
By any chance are you in New York? I have an endocrinologist that I feel like he's shrugging me off and not taking me seriously. He does not specialize in Addison's or adrenal insufficiency. He has a one star review on Google! Anyways I'm terrified of not finding a better endocrinologist. I'm worried about losing my job and my car.
@@sanch068 I’m actually in Texas. I’m so sorry you’re dealing with that, you should definitely find an Endocrinologist who is knowledgeable and able to support you. Check out the NADF patient recommended Dr map: www.nadf.us/patient-recommended-doctors.html
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I am sorry but why would a doctor say let a 60 year old woman struggle 😢that is so cruel
@teresajordon2295 I totally agree. So sad to hear medical professionals speak like this so casually.
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Did your dosage of Cortef go up with them? How is your ACTH level now? Thanks
@micuzzu just seeing this now! So I’m on hydrocortisone, 20mg a day split up into 3 doses. 10mg at 7am, 5mg at 12pm and 5mg at 5pm. I haven’t had my levels done in the last six months but I’m mostly stable at the moment, aside from some low cortisol mornings.
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Share that cheatsheet please!!
Addisonian watching
This sheet is from the National Adrenal Disease Foundation - and they have so many other amazing files under their “Tools for Life”
Check it all out - it’s so amazing!
www.nadf.us/tools/NADF_Stress_Dosing.pdf
Light, love & all the spoons
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Would you please share more information about the medication changes they made for you? Also the names of the various MDs would be greatly appreciated.
I am suffering & unable to get to Minnesota
I’d really appreciate some concrete info I can share with the specialists I’m being tx’ed by at Duke. I am acutely aware that “x” amount of Med is by no means directly transferable to another person but more info would be life changer
Thank you much 🙏
@madyjules I’m just seeing this now! I’m so sorry! How are you navigating now? Do you still need the name of the Dr I saw?
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Hello! It is so nice to meet you. I just watched a couple of your videos. I appreciate 🙏 you and your videos. Thank you.
I do have a question. Did/do you have nodules all over your thyroid?
Blessings and love. I hope you stay safe during these crazy times 🙏 🤗
Hello Heather! So happy you’re here :)
I do not have anything on my thyroid at this time. I continually get things checked every year to keep updated on how it looks.
Do you have some? Sending light and love ❤️🙏
@@SeaSpriteSpoonie Thank you for the warm welcome! 😍 That's good to hear that you have nothing on your thyroid. 👍
Yes. I have nodules all over my thyroid. One nodule may be causing toxicity. Getting a thyroid scan very soon. I was wondering what may have caused so many but my new endocrinologist says that she has patients that have the same issue and that their nodules are ok. I just had my follow up today via Zoom video. I guess they won't be doing any biopsies at this time. I was concerned because of the number of nodules and they are multiplying and growing. Didnt know if other patients got that many or not.
Thank you. I look forward to seeing more of your videos. Thank you again so much for the videos and for helping people. Many hugs, love and light ❤
Heather Hartman for some reason my phone won’t let me load your full comment - however I do see that you do have nodules on your thyroid. I apologize if you already said this, but could you share a bit about what that is like or how you figured it out? Sending light and love ❤️
@@SeaSpriteSpoonie It's ok. 🤗 thank you for responding. I found out through an MRI for my head and neck because my arm went numb a couple years back. Thats when they found the nodules. And other things. I just had a video appt with my Endocrinologist. She said that many of her patients have many nodules and that I shouldn't worry. Honestly I've never heard of one having THAT many nodules but she knows I'm having symptoms of some kind of Endocrine like disorder. So I have to go in and have early morning cortisol testing and a thyroid scan withing the month. Problems swallowing off and on also on top of more weight loss, sore and swollen lymph nodes, anxiety, etc. Not to mention always being bone tired exhausted...and I don't work. The full widespread layered body pain has been hell on earth.
@@SeaSpriteSpoonie Sending lots of love and light. Thank you for reading and responding to my comments and for helping many people. You're a great person and I'm glad i met you. Blessings always to good/better health 🙏
I still haven't done the STIM test and probably won't ever. My doctor told me it wasn't a risk she was willing to take and neither am I lol. I'm still fighting to get the emergency shot though :(
Andrea I’m so sorry you haven’t been able to get your emergency injection yet! There are some documents on the injection you can share with your doctor on the NADF website that might help, I’ll include the link: www.nadf.us/uploads/1/3/0/1/130191972/emergency_injection_kit_instructions.pdf
Sending light and love ❤️🙏
That sounds difficult but worth every minute.
Ellenor Malik going to the clinic was one of the best choices I ever made on my personal journey. Wouldn’t change it for a second. Sending light and love ❤️🙏
@@SeaSpriteSpoonie I have no idea why I'm even on this video. My only issues are pretty much autism and hypochondria.
What’s wrong with getting a diagnosis when you’re ? We have lots of years left, thank you very much.
@kathya1956 it’s pretty wild how Drs respond to things, bedside manner is really a brutal thing.
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OMG SOUNDS REALLY GOOD CLÍNICA I NEED TOGO ASAP😐 grants the bad for us? No nuts??
all the people who are indused are left in agony. nice to have all help needed. you are 1 out of many and does not give much hope to others.
I'm always dehydrated as well what do you do or take to stay hydrated
MrNotSoPerfect my first rule of thumb is that I pretty much just drink water all day long. Almost a gallon and a half a day. I carry a growler of water around typically, to help me measure my intake. I also put pink salt in my water to help the water stay in my system. I am also a huge fan of Epsom salt baths - this is literally absorbing water into your body - while relaxing!!! It’s the perfect combo! I tend to eat salt through out the day as well which also helps me stay hydrated 🙏
My steroids are messed up as well wish I could find a good endocrinologist I hardly ever sleep and I've had two total hip replacements and I'm only 37 keep up videos and thanks for responding
Wait? WHAT??? Breathing trouble? Im having problems breathing, chest pains, trouble with my arms and legs, where can I find all the symptoms?? Im sleeping less than 2 hrs a night- I need help.
@myaccount4025 I’m just seeing this now! I’m so sorry you’re dealing with all this! How are you navigating right now?
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Hi, thank you for your video. I need your help ASAP, I'm looking for someone who can help me with the Addison's disease. Did you go to the Mayo Clinic in Rochester NY or Rochester MN ? Thank you for your help.
Jennie Kapadia I went to the Rochester one - this is the endocrine specialist location so they were on top of their game and I highly recommend it! Sending lots of light and love ❤️🙏
@@SeaSpriteSpoonie Thank you so much. I just got an appointment for the endocrinologist.
Jennie Kapadia that’s amazing! Take lots of notes, bring all of your questions and good luck! Sending so much light and love ❤️🙏
Hi again, have you had any problems with weight gain. I've gained 35lbs since being diagnosed in October.
Robert Shay so actually I have not - I know this isn’t the norm with many on steroids but I actually have a hard time keeping weight on consistently. I fluctuate 5-10lbs almost every month. I eat a lot of coconut oil and fat bombs to help try to regulate, but I think that due to my fast paced and busy life schedule and work, my body is constantly metabolizing. I also think I have another underlying autoimmune disease which may play a role in this - but still uncovering things as they come along. I know most with steroid use are gaining and having a hard time losing - what seems to be the case for you?
@@SeaSpriteSpoonie since I have not been feeling good after being diagnosed with addisons my endocrinologist had me tested for very high chained fatty acids and tested positive for adrenomyeloneuropathy. 70% of people with this have addisons.(men) there are women who also have this but mostly men. I see a neurologist in may.
Robert Shay I’m so sorry you are still feeling unwell - but it sounds like you have a plan to work toward answers. Sending you all the love and strength as you continue to uncover what is happening in your body. Remember to listen to yourself and give your body the love, attention and rest it needs ❤️🙏
You don’t need mayo clinic to get Addison’s disease diagnosis.
@@kathya1956 I actually was diagnosed in Texas, but unfortunately my Endocrinologist wasn’t very knowledgeable. My health continued to decline and about 8 months after my dx of Addison’s my numbers were so off the chart that I reached out to the Mayo Clinic and they invited me down asap. It was once I was there that I was fully assessed, trained and treated for my Addison’s and other conditions and was able to start to regulate thanks to their help.
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Claiming you survived because you ate well is just an assumption. I wouldn’t advise people who might not want to take steroids to eat well and they’ll be fine. Surely if you had been eating only McDonalds every day you would have been in bad shape. Anyhow, I don’t mean to minimize your beliefs regarding why you survived. I just want to make sure people do what they need to, as this is very serious. As you know.
I had spent nearly two years trying to figure out why I had extreme muscle fatigue, had muscle cramps constantly, was not able to hold the phone to my ear for more than minute, would shake constantly, had lost a great deal of weight, was suffering from incredible paranoia, and I had even fallen in love, which may have also been a symptom. I had strange puffy knees, especially when I woke up in the am. I had a bald spot form behind my left ear. I also had these strange black dots form on my lower legs. During this period my blood was abnormal. I had super low platelets which left me covered in bruises. I’d have low white blood cell counts, and nearly zero testosterone too. What ultimately led to my Addisons diagnoses was when I went to the hospital to have a muscle biopsy and on the operating otable I had an extreme reaction to the anesthesia which caused my blood pressure to skyrocket, so much so that I almost died on the spot. After this event I was tested for cortisol and that’s how I finally found out what was causing all my problems. The doctor said I would have died had they not found out then what my problem was.
In the tests that followed it was found that I had a massive tumor on one of my kidneys. I had also found a squamous carcinoma that isn’t all that uncommon with people dependent on hydrocortisone. I now have symptoms of lymphoma which is also a possibility in people who take hydrocortisone every day. I hope the doctors have informed you of these things. I’m sure they have as you are aware that we will probably not live a full life.
People who have had organ transplants are required to take hydrocortisone every day too as it suppresses the immune system. I suspect that’s why it’s important to dose yourself properly. I’m terrible with taking my meds on time, often forgetting until the afternoon. I often forget whether I even took my meds so I end up taking them again.
With your experiences how long had you suffered before your diagnosis? What were your symptoms? Do you know of any event that might have caused you this disease? I think I may have gotten it from a bathtub in a fancy hotel in Vienna Austria. I had shaved in the tub, having cut myself, and then turned on water jets, which spit out black chunks of slime. Whatever was in that water was now in my bleeding cuts. I developed within a couple of weeks a super nasty and bloody rash in my moist groin area. The doctors couldn’t figure out what had caused it, although after the fact it was clear my body didn’t respond to the infection as it should have. Whether this was the cause or not is just my opinion.
I hope you’re doing well and appreciate that you’re putting your story here on YT. All the best.
B bo totally hear you - and honestly at the end of the day there really is no telling how my body survived as long as it had. I definitely don’t condone anyone only focusing on diet instead of steroids - and my apologies if that was what came across.
It sounds like you had quite the journey and I’m so grateful they were finally able to figure it out! It’s so scary how close we can come to life or death and doctors still uncertain. Very grateful you received the diagnoses and treatment to move forward.
My addisons is autoimmune based and we aren’t exactly sure where things started. Was “sick” my whole life - and my great grandmother had Addison’s as well. I experienced extreme stages of manic behavior, fatigue, joint pain, insomnia, inability to digest food and such low blood pressure that I was constantly blacking out and fainting. Major symptoms persisted and grew in my early 20s and by 23 I felt completely out of my mind and as if I was dying.
Took about 5 years and 1 very serious rest of constant research, drs and investigating my health to get to the bottom of it.
Thank you so much for sharing your story - sending you light and love ❤️🙏
It takes quite a while to go in crisis without steroids.
@@kathya1956 it certainly can for some people, depending on the situation it can be a rapid onset for some. That’s the amazing thing about adrenal insufficiency, there is no one size fits all. Especially due to all other medical conditions that individuals may have.
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nice hair:))