Відео

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!

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

DR OBALAR ON YT CURED MY HPV VIRUS COMPLETELY ❤

DR OBALAR ON YT CURED MY HPV VIRUS COMPLETELY ❤

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.

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?

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.

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!!!❤

My Dad was diagnosed with Addison case and it's difficult to find the medication here in Nigeria. We need Help!!!❤

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. ❤

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.

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!

Thank you for this educational video. ☺️

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.

I’m newly diagnosed. An auto injector type epipen device would be awesome and alleviate so much of my anxiety about going into crisis!

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.

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?

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

❤ 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.

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.

Did you ever take hydrocortisone?

I was born with Addisons Disease in 1970 52 years on steroids its been tough. Great video good luck

What were your cortisol levels atvthe time you got diagnosed?

Hi AJ - I was diagnosed with type one diabetes in 2007 at the same hospital in Pittsburgh. I'm now in process to diagnose Addison's - part of me hoping it's not it and part of me hoping I can medication to feel like myself again. Thanks for sharing your story!

I jus got out of the hospital from having an addisonian crisis. It was scary n I have had both types of adrenal insufficiency all my life. This was the first time a crisis has ever happened.

I have a question. I have had my left adrenal gland removed due to a pheochromocytoma. I had an adrenal crisis after my UFE. My skin has darkened on my face, arms, knees, elbows, and lower legs. I believe I have Addison syndrome along with my aunt who had her right adrenal gland removed. Together we have Addison’s disease. Before my surgery, my heart would beat super fast and my HBP was uncontrollable and I started to get darker. The constipation started right before my heart attack and my heart started failing. Her diabetes was uncontrollable before her right adrenal gland removal. She lost a lot of hair in the top of her head, she gets diarrhea when stressed and stomach discomfort. I have more memory issues and she sits down and falls asleep. I don’t I take meds for insomnia and depression now. We both see Endocrinologists at UFHealth Shands Gainesville, but it appears that they are clueless about adrenal insufficiency. I have asked about studies to see the different symptoms of people who have had opposite sides adrenal gland removal. IMO the left and right adrenal glands do different things, but I can’t find anyone who cares. I think that doctors would be more apt to check the metanephrine levels as there are women walking around with hair loss in the top and they are being told that their thyroid hormones are just fine. Also people would’ve be over medicated with HBP meds. Less tumors would be found after the death of people because many doctors don’t bother to check because they don’t know the symptoms of someone suffering because their adrenal gland is not functioning properly. Last thing, I know that so many people are suffering with memory loss due to the adrenals. I went into surgery with an excellent memory, but right after the surgery til now, I have memory issues, add, some anxiety, and exhaustion if I push myself too hard. Please tell me where I can find some literature or copies of journal articles that I can give to my endocrinologist. Everyone I’ve seen only focus on my thyroid. I’ve had nodules on my thyroid for years. Thank you for this video and any help you may direct me to. I was in the hospital for a week after my UFE because they didn’t recognize the symptoms

Thank you for sharing AJ 🙏❤. 2 Questions A) did you have to take a break from basketball post-diagnosis or did you just go right back to it ? B) you said you're playing girls basketball and I'm very confused. Can you please explain? #NewHere :) -mandy