Interviews with Patient with Addison's disease
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- čas přidán 10. 09. 2022
- This video contains interviews with patients with Addison's disease led by Dr. Vaidya. These interviews were conducted as a part of a learning session for Harvard medical students in 2020. All the patients have given explicit consent to share their interviews online so that others may benefit from hearing their stories. These interviews are being shared for the benefit of other patients, families, students, and healthcare providers.
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I am sipping on a cup of salt water trying to get approved for medical insurance so i can hurry up and see a doctor. My last visit the doctor told me to just drink more water even after i told her i drank a gallon a day. I fear i wont get the care i need until i have a crisis but this gives me hope to take care of myself
Try to let your body heal itself. That’s what I’m trying to do try to eat right and see if you can get your body to heal itself. That’s what I’m trying to do.
I am in the beginning stages of adrenal diagnosis, these videos are so helpful, thank you for sharing your journeys with us...
I am so thankful that I listened to this video because I have Addison and so I subscribed I’m not on any medication and I’m really learning a lot. Thanks.😊
Oh my goodness this poor lady with the baby you really did have a struggle. Wow you’re very fortunate you live through that thank God you and your baby made it through. My heart goes out to all three of y’all because I have Addison’s disease too and it’s the most horrible thing I’ve ever been through in my life and I’m just beginning, knowing how to even deal this
Thank you ..this will stick to memory. I suggest all fellow docs and students to keep habits of seeing patient interviews, it will get imprinted and help in diagnosis
Thank you very much to you guys for sharing your stories.
I listened with tears in my eyes as I can personally relate to these stories. I nearly died from an Addison's crisis in 2006. Thank you for teaching our future M.D.s as I was misdiagnosed over and over!
I nearly died from it in March of this year. Still very tired and I don't sleep well.
I live with Addisons so I understand completely. I hope this text finds you well💕
So similar to my wife's story. Nearly died before being diagnosed back in 2000. Thought she had mental health issues!! before finally realising it was Addison's. Happily managing now.
@@surlespasdondinetry to eat some turkey and cheese or delicious protein shake this will help sleep u need fuel for sleep
You don't seem to mention the low blood sugar part of Addison's. Prior to diagnosis I had most of the typical symptoms tired darker skin ,dark spots on gums and palmer creases. But there was a spell when I woke up in the morning got dressed but I could not figure out how to walk down the steps to the kitchen. I stood a top of steps completely confused as to how I would not fall if I lifted my leg and put it down on the step. I finally just sat down and scooted down. The rest of the day was normal and the step incident was a barely conscious event. I didn't tell anyone or my Drs. for years. When I finally asked my endo. about it he laughed and said we hear that kind of thing all the time, it is low blood sugar. I was very sensitive to any kind of noise and could hear garbage trucks ,barking dogs etc. from a half mile away ,leaf blowers ,motorcycles would also cause me much anxiety. Endo. did tests but I finally found an old study about the ear having many potassium receptors. And with the low sodium ,high potassium of un diagnosed Addison's one's hearing becomes more acute.
So true I can hear ringing in ears when in low sodium high k so I take extra hydrocortisone immediately to avoid crisis
Yes I feel like I jave super hearing! I usually have my TV on 25 and now it's on 5. Also my bood sugar drops under 50 10 tines a day
Well, I’m so glad I watched this channel because I have Addison’s disease too is horrible and you do feel like you’re gonna die. It’s horrifying. Hope the ladies baby is OK. Hope the baby doesn’t get Addison’s.
I have addison's. It was missed because an A&E department did not listen and told me to drink water. It was finally diagnosed when I was dying. The drug regime I have been put on is fludrocortisone and hydrocortisone. These drugs have taken the muscle from my thighs and upper arms and turned this into fat around my abdomen. I have put on 18kg/40lbs in a year. From 66 kg to 84 kg. From 145 lb to 185 lb. I used to be slim. I am now fat. The medical care in the uk is disgusting and rudimentary; it's the worst in Europe. They don't listen. I see the physician dealing with this once every 6 months. No real tests are done. When I raised the weight issue he tried gaslighting me that I was fat, but the Addisons was concealing this. This is total nonsense. What can I do?
Hi, I'm not a doctor, but I have Addison's (diagnosed
2016) .I too struggle with weight gain, but I always have, so it's hard to tell if it is caused by cortisone excess. I felt the highest weight gain after a crisis, when I was given high doses of hydrocortisone. I take fludrocortisone and prednisone. I've been to 3 different doctors and they all told me that both doses I take were correct, so my weight gain was my fault. The last appointment I had the doctor at least admited it could be related but considering it was life saving, it was still my best choice.
Do u have a proper endocrinologist?
So, I myself think I have Addison's disease, but it was suppressed with nicotine consumption. When I stopped smoking for health reasons, I started to experience typical symptoms, but more on the inflammation side, like inflamed gums and gut with diarrhea, brain zaps, and food intolerance through an immune system overreaction. However, I never got tanned because I started smoking again, knowing it was related probably because the immune system was preventing it from attacking my adrenal glands further. Now, I have permanent damage, and I never felt the same again. I'm still smoking because I am anxious that it might come back. At that time, doctors didn't take me seriously, and I was so frustrated because I knew I was very sick, but not sick enough to make them curious and test my cortisol or ACTH. At that time, I didn't know what I had, but now I know, and if I stop nicotine, it will come back.
What is the normal level for 10am cortisol? Thank you.
I was in the hospital and I was diagnosed with Addison’s disease, but then I heard I had toxic copper overload too Does anybody have Addison’s disease with the copper toxic too
How likely are babies likely ti develop addisons with a mother that actually has primary addisons?
How do we approach this subject with our doctors to get diagnosed? I feel the mere mention of adrenals, the more they refuse to even entertain the idea.
You need a good Endocrinologist. I know they are not easy to find & depending on your health insurance it can be a challenge. I’d go in with this type of information in this series. Be insistent. It’s a simple blood test that checks salt & potassium levels for Addision’s. A primary care Dr should be able to run that test. Thyroid tests are more intricate. I hope this helps.
Noticed her gums were discolored dark when she said she hit rock bottom. Dark circles around her eyes.
Did they mention the daily dose that they are taking daily?
I had the almost 90% same terrible pregnancy, and so sick 9 months , and emergency c section. Still suffering 7 years later . Doc is only wanting to give depression pills. I’m declining
See other doctors
My wife has secondary adrenal and the hydro has eaten thru her bones in taking it for a couple years. So bad that she is waiting for hip surgeries and can't walk. Seriously can't walk. I know you have to take hydro, there no other options other than presidisone???
So what do you do when you suspect an adrenal insufficiency but every doctor you see doesn't take you seriously?
That's where I'm at, too. 😪 I just sleep with a note on my pillow now and I write "adrenals" on my body with a Sharpie and can't wait for the day this torture is over.
You need a good Endocrinologist. I know they are not easy to find & depending on your health insurance it can be a challenge. I’d go in with this type of information in this series. Be insistent. It’s a simple blood test that checks salt & potassium levels for Addision’s. A primary care Dr should be able to run that test. Thyroid tests are more intricate. I hope this helps.
You need to get a 9am cortisol test so check your level.
How do you control your weight despite taking Hydrocortisone? Hydrocortisone makes me gain weight.
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