The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life. Our goals are to stop death from undiagnosed Addison’s disease, to improve life quality of those who suffer from adrenal disease, and to promote the study of adrenal disease to improve treatment and find cures.
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A docter i still dont get medication... 7 years later 2 times this diagnose.. Belgium
Thanks aj. Gonna get tested for it
Thanks for sharing! I’m also in post secondary school and I’m curious about what accommodations for accessibility did you find were helpful? I also have co-op/clinical placements. What accommodations might you suggest for that? I know it’s pretty situational but I’m curious what has helped you?
I have Addison
You would think they would have that injection ready so you can just go ahead and stick yourself and give the medication
This is an organization supported by incompetent physicians 😢😢😢
The pharmacist was correct about the dangers of long term steroid use, but unfortunately with addison's it has now become necessary. And big pharma rejoices!
People with adrenal insufficiency need the replacement dosage, for what their body is not producing. www.nadf.us/uploads/1/3/0/1/130191972/adrenal_hormone_replacement_protocol_and_quick_guide_9-30-21.pdf www.nadf.us/primary-adrenal-insufficiency-addisonrsquos-disease.html
Such a great story May I ask you a question my dear Do you take DHEA supplement too???
I have been taking my morning dose of Hydrocortisone 10mg with an empty stomach. I hope this is ok and I will not develop any problem because of this. Been gaining so much weight already and I develop fatty liver, im doing intermitent fasting now to cure my fatty liver and manage my weight.
Nice job AJ . I was diagnosed with Addisons June 2001 It's been 23 years. I lived in Iowa humid and now Phoenix . I hear people struggling with Addison . I want to let you know my I occupation is outside 118 TEMPS. I have never ever struggled 1 day with my disease, I am 58 years old, And everyday since I took my first steroid medication it's been 100 % fine. You will be fine. Make sure your taking Vitamin D and calcium supplements
I’m sorry I missed this live webinar, I’ve been dealing with Cushing’s disease for almost 15 years. I’ve had 3 pituitary brain surgeries. I’m 5 months post op from the last surgery and don’t feel any better. I’m looking into getting my adrenals removed and hope this will get rid of Cushings and get to have my life back. I appreciate hearing from professionals doctors who seem to truly understand what we the patients are going through. You all are absolutely correct on how it’s important to seek a doctor that’ll listen to us and know which tests and how to perform them accurately. I’m happy with my Endocrinologist after going through more than 5 different ones, including traveling to another city; I found one that assured me she be my best friend and with me.
I have Addison's. My doctor a naturapath tests my yearly with the 24 hour urinalysis. I have no adrenal out put from the entire cortex. The only hormone that registers is my daily oral dose of Hydrocortisone. I struggle daily. I have a lot of pain and have to stress dose or I go into crisis then coma. I know how to ward off a crisis but it is a battle. Our local doctors don't have a clue what to do. I have been on the edge of death and they do nothing. Only by God's mercy I am even here today to tell my story. I have many. If it were not for my Naturapath I would be dead. I live rural and there are no Endocrinologist here and the ones far away don't take patients out of county. Maybe in the bigger cities. I am so sick I can not travel and my car is old. I can not tolerate stress or I end up going into crisis. I have to think whether a situation merits more HC. I had a bad cold, BAD; and had to up dose. I am already up-dosed due to high pain levels. I supplement salt and electrolytes. I take DHEA and Pregnenalone. I eat well, no sugar and no caffeine. My life is consumed with trying to stay alive. I am very tired.
Stay strong Linda, I will pray for you. 🙂💚
To manage my pain these are the things I try to do daily: 0 Sun Bathing 20 mins daily or buy Infrared lights. 0 Ice Bathing 10 to 15 mins ( Dont do this if you have high BP) or If I have access to ocean I submerge my body for the same period. 0 Grounding, better if you can lie down on the ground while the palm of your feet is planted on the ground, do this as long as you can. 0 Foam rolling 5 mins, I focus on my back and legs only. 0 Tapping the 5 points of our lympthatic drainage for 10mins.
Hello ! Yeah, would love me. I have Renal cell carcinoma. I have one kidney. I have both adrenal gland, but I had cancer treatment and it ruined my adrenal gland forever. Have a small spot of cancer on my adrenal gland so far everything‘s fine and stable. put my question is the adrenal insufficiency is really tough every morning. I wake up very emotional crying and pain until I take my steroid and pain medication. I’ve been stress dosing has helped some. I’m pretty much achy and weak and sore muscles all day. I cannot just sit around. It makes things worse so I have to get up and move. Any advice?
These are the things I do to reduce my pain without taking any pain killers. Grounding better if you can lie down on the grass or sand (as long as possible), Sun bathing 20mins/day (you can also buy portable Infrared lights, Ice bathing (dont do this if you have high BP), if you have access to ocean 10 to 20 mins also helps, Foam rolling 5 mins just do your back and legs, 10 mins of tapping your 5 lymphatic points. All I mentioned can be research in the net. I do 2 or 3 of this activity daily.
I recently went septic BP 70/38 but I kept telling drs and rns that I had adrenal insufficiency. I had 2 I&D surgeries and told anesthesiologist but wasn't taken seriously. I do not have Addisons's but fried my adrenal permanently with steroid inhalers over many years. But instead of receiving hydrocortisone I got fluid bolused so much that I ended up in chf discharged that way and came back to ER with 37lbs of excess weight on me. I was sent by ambulance to bigger hospital and while alone in ER I crashed again. The problem with this is I cannot think straight and don't know to remember it. I always try to tell everyone the second I walk in, I have adrenal insufficiency. I don't know if they think'oh well she must have some cortisol being released because it's not Addison's ' but I'm not taken serially. I went from walking to the bathroom with an ivV to bring unable to stand up to grab my purse. Luckily an internal med Dr came in to go over my meds and when he reached my steroid I tremendously and said I was craving. I didn't get hydrocortisone for almost an hour. I was in bad shape. None of the drs seem to take things seriously enough. What do I do? I'm afraid some day I will end up waking up intubated in icu! Then the other day I went to see the eclipse in totality. It was amazing and I was so excited. When we hit back to the place w were staying I was going to help make dinner but felt very weak and nauseated. Again forgetting about my Addison's I just laid down. My sister said Sharon take your Cortef! Then I said oh yeah! I took it and felt better in an hour. It seems I'm craving more lately but I'm on 20 in the am 10 in pm. I wish there was an alarm or something. Maybe I need a service dog! 😂
I enjoyed listening to your story A.J. I too, have Addison’s Disease. I was diagnosed fairly quickly in 2000 after exhibiting several symptoms. I was healthy and a good weight and active but then….. I was a nurse working at a hospital and so did my boyfriend. He would have to drop me off at the door because I was very cold intolerant. If I tried to walk in, I would vomit and become very ill. I had a low blood pressure and passed out a few times especially if I was low on sodium. I felt my life had turned upside down. My medical doctor picked up on it right away. I didn’t believe and went to three doctors to be tested again and again. I stayed ill a lot but eventually learned how to take care of myself but then they said I developed asthma. It was terrible and I was in and out of the hospital. That happened after I gained a lot of weight and had to use a c-pap. Long story short, I got my life back and it took several years but I feel very good now. My weight is much better and I’m active. I am now 67 years old and feel better than all of those years I suffered being blown up on extra steroids for this and that. My maintenance dose is Hydrocortisone 20mg daily. I do still crave salt though. Take care and I hope you do well but just remember to adjust your dose for surgeries etc and if you ever experience trauma.
I want to thank you very much, and I'll take your advice. This is very important to me, yet I was very unsure on what steps to take. Now I'm confident about how to handle my personal situation.
I lost both Adrenal Glands due to Pheochromocytoma. Now I am Adrenal Insufficiency.
Also for those of us cannot even run down the garden path who wants to run 3 miles ? Also what is with the hair loss?
God be with you and I hope you are getting better. Love from another sufferer
Thanks for sharing, buddy. I’m SAI from Youngstown. Keep up the good work, my friend. 🫶🏼
Hi AJ, thankyou for sharing your story. It's amazing that you are so positive and have your life back. I live in England, was diagnosed in June 2022, with no symptoms prior, apart from a deep suntan! I had donated blood that day which sent me into an adrenal crisis. I went to the hospital as I knew something was horribly wrong and am so lucky that the A&E dept saved my life, despite not knowing what was wrong. I too am doing well and listen to my body. I am a reflexologist and continue to have a treatment every three weeks which I know keeps me well. I'd encourage Addisonians to give it a try! All the best to you. Well done.
@usersb6The disclaimer is probably a legality, but as a recently diagnosed person with SAI, I am thankful for the information/resources NADF can provide. Have some latitude.
❤
How does one know if this may be a problem? Dr did serum cortisol and was hi IN range but saliva (active) was low morning and noon and high evening and night (will see how to retrain my circadian rhythm). Can the adrenals effect BG ? An ACTH lab was 16 so in lab range but wondered if not really optimal.
Thank you for reaching out to us. I forwarded your question to our Medical Director, Dr. Margulies. In his reply he stated that at this point in time there is no conclusive data on cortisol and ACTH levels that could be used as a guide to manage Addison’s disease. Dr. Regan’s My AI Cortisol study (www.nadf.us/myai-cortisol-study.html) includes analyzing cortisol data to see if it is helpful. For now, I would discourage individuals from checking cortisol or ACTH levels and simply rely on clinical well-being and the lowest dose that prevents adrenal insufficiency symptoms. Please discuss the results with your endocrinologist who ordered them. Thank you again for contacting us, Kalina ([email protected] )
Wow, how is this for a start?: “NADF does not engage in the practice of medicine, is not a medical authority, and does not claim medical knowledge”. I utterly detest these statements, always passing the hot potato to the so called “experts”. Which is to mean the medical establishment in charge of controlling current medical dogma. Thanks but no thanks.
I am getting Immunotherapy for Stomach Cancer and started having some major fatigue and bad headaches and several other symptom's thankfully after I passed out during a routine blood draw before cancer treatment my oncologist had me tested and found out that I had addisons, I started on low dose prednisone and immediately started feeling better, I wa only misdiagnosed for a month, my heart goes out for people that suffer for years before they are correctly diagnosed,
My Dad was Diagnosed with Addison case for a while and we're finding it difficult to get the prescribed medications We need Help!!!❤
There should be no problems with obtaining hydrocortisone, or prednisone in the US . May I know where are you located? Please replay to my email at [email protected]
@@nadf_adrenal Hello Thank You for Responding Am grateful this means alot to me and the family I'll do as. You've said sending the Email and waiting for response 🙏🏽
@@nadf_adrenal Please I sent a mail over three weeks now but I've not gotten a reply but I'll send it again and again till I get your response 🙏🏽
@@nadf_adrenal Please I Sent a Mail according to your request and have not gotten a reply yet. But I'll send again and again till I get your response Thank You 🙏🏽
My Dad was diagnosed with Addison case and it's difficult to find the medication here in Nigeria. We need Help!!!❤
Just pray to God bro and take care of your dad
@@piyush6103 Thank You So Much 🙏🏽 MY Dad is Recovering very well is just that we still find some difficulty in some other area but Prayers indeed has been very helpful. Please if you'll pray for us too we'd Appreciate it More Prayer More Advantage Thank You Again🙂🙏🏽
Never ever advocate for yourself all that gets she was a script for an antidepressant in a psych diagnosis in your chart. Always have an advocate on the phone or with you never speak for yourself always have someone else speak for you. It’s OK to speak a little bit but you’re not gonna get taken serious if you self advocate. As you say in your story, you’re stupid doctor just gave her antidepressant. Didn’t give a crap about what you were saying. nobody should ever be taking psych pills until all physical illnesses are tested and ruled out.
What about vitamins?
What about pain? My wife anguished in pain daily. Muscle and joint pain, doctor won't give her anything except a neurological medication for pain that doest work
🆘I am alone as have had no energy for 8 years.. my ex, took my kids by filing false criminal charges. I’ve been dragged through prisons and the court system, and even after his death, the government won’t give me my kids or my freedom back my health is ruined, and I have all the Addison symptoms, but my PCP refuses to test, but promised the referral to Endocrinologist . My life is so unbearable I wish for death every day but I will never commit suicide because then I’ll have to come back and do all this again but I don’t know what to do or how to convince the Md to test even in Endo will just order the salt and potassium and since . Not as low and high is normal. They just don’t want to test for anything outside the box. I was even in ER but because of my hypertension, they didn’t see. It is adrenal insufficiency, and just told me to get the hell out of there and refuse to provide any help. Even though I was in collapsed state I just don’t know what I have done that God and the government and doctors treating me so badly that in eight years I cannot get no medical help and no justice.
Thank you. I'm 3 years in and very ill. The hydrocortisone has given me osteoporosis, severe and I've lost the ability to walk due to compression fracture that collapsed and wedged my vertebrae. Now my hip is fractured. I appreciate your story. It gives me hope. ❤
I'm sorry to hear you dealing with all of that. Do you have a current Endocrinologist you are working with who is offering you the care you need? I'd love to direct you to the NADF website and invite you to reach out to [email protected] if you have any questions or would like help connecting with a support group in your area: www.nadf.us/
Thanks for sharing your story. 🙏🏻 When you were diagnosed, did you go through a ACTH/Synacthen test? What medication/hormones are you taking besides hydrocortisone and what dosages? You mentioned injectables, is oral HC not sufficient? Thanks. 🙏🏻
Diagnosed this past year. This is a new to me. Haven't had a crisis yet and hope not to. Been taking my meds regularly. Thanks for sharing.
Glad to hear you have not had a crisis yet and hopefully you will not! NADF has an entire brochure dedicated to being newly diagnosed: www.nadf.us/newly-diagnosed.html Reach out to [email protected] if you have any questions.
Did you have the tan everyone talks about? I have Graves already but I also have every symptom of Addisons except tan skin. Whatever is wrong with me is ruining my life.
I live in a Canadian Province where essentially you can’t get diagnosed with anything until you are dead. I have been having episodes for the past three or four years and my morning cortisol is dangerously low. I can’t get any further testing done because my doctor is too busy to follow up, so I took this into my own hands. I take L-tyrosine, B5 and large doses of vitamin C along with a ton of rest. Pray for me!
We are sorry to hear you are unable to receive a proper diagnosis. You should reach out to the Canadian Addison Society to see if they can help offer any resources for find an Endocrinologist who can help: www.addisonsociety.ca/
@@nadf_adrenal wow, that’s actually really good advice. I’ll call tomorrow 🥳
You are being prayed for😊.🙏🏻🙏🏻🙏🏻
So addisons disease is rare I read. I wonder if it's not as rare as they think but actually woefully under diagnosed
Thank you for this educational video. ☺️
Glad to hear that it helped! Please reach out with any questions at [email protected]
Similar story to mine. I was very fit serving in the US Marines. I used to be one the of the fittest in my platoon and then I just started noticing I couldn’t keep up. I was getting dizzy and couldn’t eat. I was separated from the Marines which kind of ruined my life for me because it was my dream. Have had addisons disease for 13 years and honestly I feel great. No noticeable symptoms. Some days I’m more tired than other but that’s about it.
While we are sorry to hear you have to leave the Marines, we are glad that you are feeling great and honoring your body! Thank you for sharing your story!
What is your current dosage of meds
@@faizahzakaria8372 If you would like, you can reach out to [email protected] to be connect with AJ, the NADF Pennsylvania Support Group Leader.
I’m newly diagnosed. An auto injector type epipen device would be awesome and alleviate so much of my anxiety about going into crisis!
We absolutely agree! SOLUtion medical is working on just that: www.solutionmedco.com/ Please reach out to [email protected] if you have any questions regarding your new diagnosis.
I am currently living with Addison’s. I am 80 years old and have been battling this for quite a few years, but did not know what it was. I have also been having issues with the hydrocortisone to the point that I feel like I am smothering day and night. I definitely know that I’m having a lot of side effects from this and I definitely cannot take it. It’s a battle with my Endo chronologist. I have been to the hospital emergency I have seen so many doctors and had to give blood everywhere. I’ll do much better on prednisone and there seems to be a problem with them giving that to me a little bit, I have said I would rather have quality of life than quantity since I will be 81 pretty soon.
We are sorry to hear that you have been experiencing side effects. If you'd like to explore finding another Endocrinologist who can offer you support and perhaps help you make the switch to Prednisone, you can check out the NADF Patient Recommended Dr map: www.nadf.us/patient-recommended-doctors.html . If you have any questions, please reach out to [email protected]
Great story . ❤ hope I'm the same as you in 8 years . I'm just diagnosed 8 months . But doing great
Thank you for this
I suspect that I too will be soon diagnosed with Addison's. You said that you have to inject. I thought that it was available in pill form. Am I getting wrong information?
You only have to inject in servere cases . Rarely . Only in adrenal crisis
@@user-te1kf3dk8b I thank you very much for that information. It takes a bit of my concern about it out of the equation. It is much appreciated. You have a wonderful day.
@peterdobson3435 you can keep as an emergency stop plug . Or just go to nearest a&e . But only in an adrenal crisis . You'll soon calm down into the illness and be more confident . I'm very happy 8 months later . And healthy
Make an appointment with your local endocrine nurse . They should give you a talk on things and make you more aware . Also calmed me down alot
@@user-te1kf3dk8b Again, thank you for the information and encouragement. It is greatly appreciated. I am grateful that one can manage this disease at least. It just goes to show that no matter how careful you are in life when it comes to your health, you can never prevent every medical issue and this is one such rare case.
Tanned skin is what got your dad to remember, but in some cases of addisons the hyperpigmentation does not occur. Scary thought
Too much talking disease. Get to the point
If you can't say something nice...
❤ thank you for sharing your story. I’ve been trying to figure out what is going on for years but this sounds Exactly like what I’m going through.
Same!! To a T!!
Both myself and my daughter suffer from addisons. Quite usual so I believe
I’ve been diagnosed with adrenal insufficiency years ago. When I started the hydrocortisone I had a massive dizzy spell so I stopped it. My calves hurt so bad after an average day at work. My joints, cartilage and muscles I wake up every day with pain. My worst problem is that I have these crashes that I call “alligator death roll” because it is just that disturbing. Had one during the day on Thursday, am still exhausted. It was followed by a bad migraine that lasted 24 hours. My siblings are diabetics. I feel like this is worse because there are no solutions.
Sounds like your potassium level is high. Mine got so high the ER staff had never seen one that high (7.8). Autoimmune diseases usually don't stop at one. I have 8 now ughh!
but there is a solution-taking cortisone. You cannot live without it.
Did you ever take hydrocortisone?
I was born with Addisons Disease in 1970 52 years on steroids its been tough. Great video good luck
My new born son was diagnosed with the same. Can I contact you for a chat, if you don't mind.
So you have been taking steriods all that time and feeling good
What were your cortisol levels atvthe time you got diagnosed?