Відео

I have Addison’s disease and I’m not taking any medication. It’s been six months. I don’t know why my doctor pre-doctor didn’t prescribe it anyway hope and pray that I can get better it has been very hard six months since I’ve seen her very tired very week no appetite very skinny skin and bones so I will be questioning her when I see her. I don’t have any medication not that I want to have to be on it but I need some help struggling every day

Please note that the subtitles say "Adrenaline Insufficiency" rather than Adrenal Insufficiency, it could be due to Sophia's accent.

Really nice video. Thanks.

Currently in hospital after pituitary surgery and pretty dang sure it's DI that I've got.... This video is so helpful and informative. Thank you so much for your stories, your difference and your hard work.

Over 8 years I'm trying to get diagnosed I have all symptoms of now advanced cushings and my health is declining fast now, muscles weak, affecting memory multiple times a day are so debilitating, I have been reffered endo but waiting list I'm in uk

Can anybody tell me addhison desease can cure? Plizzz reply me

Thanx alot

I've been diagnosed December 2023, live in the US. I am seen by an endocrinologist who has little interest or knowledge of AVP-D. Thank you for for this professional and informative video.

Hi, my name is Blythe and I have Addison's disease i went for my doctor appt and came home then later my dad died back in 2022 he didn't get heard about it. I worry about this Adrernal crisis. I don't what this to happen to me. 😢

🤯😮...W🥶W! I learned something new. I wish I knew about this channel so I could have seen this live😞

I have had secondary adrenal insufficency for nearly 13 years and had 40 crisis in this time. I have to take hydrocortisone tablets three times a day daily for the rest of my life to stay alive plus the emergency injection in an emergency ( adrenal crisis). It is so scary and whoever says you can live a normal life with this condition is either very lucky or in denial .

I found most of this was stating the obvious. We should be told which particular hormones by name is effected, not just referred to as hormones and there was no mention of the pituitary gland swelling with tumour or pregnancy or if you are on the contraceptive pill, and only one medication mentioned cabergoline, what about bromocriptine,

I had s macro prolactinoma my prolactin was 38,000

Hello, in a male child with panhypopituitarism, as we start testosterone after his linear growth is achieved how can we plan for his future fertility issue while he is on testosterone?

Thank you. I really appreciate the focus on Prolactinoma this year.

Im really sad I didn't get to see when this was on,😢

For me, I was also diagnosed with addison's following a pituitary tumor removal and I am also taking hydrocortisone I feel like I have no idea what my pituitary crisis' will look like, but (I believe that) my pharmacist told me that I could just ask for extra pills before calling 911.

Nice presentation

Bless you all

Excellent information ! Thanks

I live in Turkiye. I am drinking 10litres a day and the water still couldnt be found in my blood.. i really need help

Very helpful. Thank you.

Absolutely I have severe tachycardia and high blood pressure w my Cushings.

I am on Isturisa as well and cortisol has normalized to 12.5 during the AM, unsure about late night but almost no symptoms have left. I’ve only been on it 3 months but yeah, it also causes androgens to go up and thus worsening hirsutism. The dose needs to be increased until control is reached. If it doesn’t get there, I want a BLA. Unfortunately I contracted MRSA during my failed pituitary surgery and ENT says I should never have another pituitary operation. :(

So glad to catch the replay here on UA-cam! I have pituitary Cushings Disease, was diagnosed in 2020 but onset was way back in 2004! Faced misdiagnosis and dismissals for years. These types of discussions are soooo necessary for patients like myself!! Thank you so much!!

Im 50 years old I was born with the condition also my brother he is 48. My two grandsons also were born with the condition, they are 7-4 years. My daughter is mine first born. I live in Puerto Rico, grandson in USA Texas.

Just discovered this channel . I had cushings 2004 I only have one adrenal gland now and not on medication. Can you manage with one adrenal gland ? I haven’t been medication for years now . I just always have in my mind I could get poorly again . I don’t have any endocrine appointments anymore or anything.

Thankful for this information! It was harder to come by when I was first diagnosed

I have had AVP deficiency for 40 years and it's a real pain trying to explain this to nurses. I had one nurse try to give me insulin and I'm just glad I was with it enough to stop her. You really need someone else who can advocate on your behalf.

Thank you❣️ as a person with AVP Deficiency (D/I), it takes energy, I don't have to spare, explaining the difference. The thirst is no joke and that's how I know I am late on my pill. I take desmopressin twice daily.

Is 4.5mm pituitary cleft cyst large enough for surgery. I’m female 71 of age

Thank you. That's very helpful and the most information I have had since I started having to get up a minimum of 4, yes 4 and sometimes more, times EVERY night to go to the loo. Can I ask - do you have to have both excessive thirst and excessive visits to have AVD?

I had a water deprivation test 3 weeks ago was stopped at 3 - 4 hr mark due to weight loss, the jab given at end of test gave me such a great night actually slept 4 hrs without waking for loo, after months of hardly any sleep. I see consultant in a few days time, hoping for diagnosis and treatment. The past 6months have been crazy, went from hating to drink water to drinking vast amounts of ice cold water and still feeling thirsty, and it’s the best tasting thing ever, the morning after the jab, I wasn’t thirsty at all and had a sip of water which tasted horrible again…..it was such a quick change to how it was before my symptoms started !

Great info. Appreciate the straightforward, down to earth delivery of this information. Very helpful.

Fantastic session, very sad story to begin with. Very informative and good to know the name change is global! Personally very glad the name is being changed as encountered the diabetes mix up numerous times whilst in Hospital.

Terrible trying to follow the subtitles, makes zero sense! Would have appreciated a long standing DI patient and non-celeb interviewee from the Facebook group.

This neurosurgeon is a brilliant surgeon he helped me so much. I’ve always been so grateful to him. He was the first Consultant to really help me. I can’t thank him enough for all he tried to do. Unfortunately things aren’t good again but I’m dreading going back for more surgery. Very sad to hear he doesn’t perform spinal surgery but totally understand it’s boring. Not complex and skilful like brain surgery.

I'm from central Asia, live in Poland for 2 years. I have acromegaly symptoms. What should I do i don't know.

Thank you to everyone for the information and the support given

Thank you for this; information is difficult to find. I dealt with symptoms my entire 58 years and finally found help when my naturopath took a copeptin level- the desmopressin has improved my life tremendously (poorly controlled asthma symptoms appeared to be the result of the chronic dehydration).

I Hope Santa will give me a new Pituitary Gland for Christmas......

I am located in the United States of America (East coast) I believe that I may have this and have a new patient appointment with a urologist as of Tuesday..how can I get an ID card if I do have this condition?

Thank you

😞 p♥r♥o♥m♥o♥s♥m

Michael is loved by Cushies all over the world!! He goes out of his way to learn and share his knowledge with the community. I would not be watching if it were not for him sharing the video. I’m grateful that he’s a pain in your arse! 😂 I’m in Los Angeles. Dr David Kelly’s patient. I wish he would’ve been more honest about the post op nightmare. He told me that I would feel like I had a bad flu for a week and most people go back to work after 2-3 weeks. I’m 4 years post op and I will never return to work. My cortisol never totally crashed after a week in hospital. They sent me home without steroids. The following week I shook like a junkie, vomiting, pain from head to toe, I have never been so thirsty. Thanks to our Cushing’s community I understood to watch out for AI and DI. 2 weeks post op, I ended up back in the hospital for 3 days after I needed to be pushed into the endo’s office in a wheelchair and I suggested that I needed IV steroids. I feel like all I did for weeks was drink and pee for weeks. They denied that I had DI even though I peed 7 liters for a 24 hr urine! I wasn’t strong enough to shower for a month! I had terrible emotional dysregulation, everything made me cried 😢. They did put me on steroids after I left the hospital the second time. My cortisol was still in low of normal. But if someone can’t function, treat them! I explain the weakness as we go from having a nuclear plant in our heads to trying to live on a small watch battery. I was weak and in pain for a year. It was so bad that I regretted having surgery until I got to the other side. Then I had the best 8 months that I’ve had in 20 yrs. Then came the relapse. Unbelievable. I agree that the Cushing’s patients know more than most drs and they need to trust us. I got a new primary doc earlier this year and I spent our first appointment explaining the diagnostic process to her. I needed to go to the ER last weekend because I had a high fever and tested positive for Covid at home. The ER dr looked at me like I was lying about having Cushing’s! I couldn’t even sit up, I was going into shock and told him that I needed a low dose of dex. I finally had him call my endo on Saturday night. He came back with Dex in his hand and had me admitted. I also had tumor left in my right cavernous sinus, but it’s not viewable on MRI. So many Cushing’s patients have tumors that are unseen. Patients are struggling to get diagnosed and always fighting with drs. Thank you for your efforts and compassion for your patients!

I'd booked to attend this session and missed it - thank you for posting this re-run

There’s no sound

Just a note that this was a bit of a difficult watch, the audio seemed to cut out for 3 or so seconds every few seconds making it really difficult to follow. Just some feedback to please try and improve the stream next time if that is at all possible!

It's November now. Back in June my 22yr old son was diagnosed with a brain tumour. It's removed, but his pituitary doesn't work. On November 5th , ( ironically the same night as in your film) he had a seizure, fell and broke a vertebra. I struggled to give him the hydrocortisone injection. The powder somehow bunged up the needle and wouldn't draw up the liquid. It was so frightening, I was shaking like a leaf. I drew up more water, and that seemed to free it. I agree a pen would have been better. I was the only one who had training. What if I had not been there? No one else would have had a chance. It wasn't until that night we realized how serious it was. I hope your daughter is still doing well. xx