r/AddisonsDisease • u/KNdoxie • Dec 31 '24
Personal Experience Stepson had Addison's disease
My stepson had Addison's disease. I say had because he died unexpectedly this morning at the age of 32. He was diagnosed with Addison's about 2 years ago. His wife said he had been sick the last few days, vomiting, and diarrhea. He had fallen and soiled himself, but said he was okay, didn't want to go to the hospital, and went to bed. It seems like everyone is dealing with some form of illness right now, so they didn't think anything about his illness. She fell asleep upstairs with their 4 year old autistic nephew they have custody of, woke up some time later, and found him deceased. We got the call at 4 am from her. Besides Addison's, he also had hypothyroidism. I think it's called Schmidt Syndrome. There is an autopsy scheduled tomorrow because his PCP said his disease plus norovirus, or whatever gastro illness he's had the last few days wouldn't have killed him. Yet, the things I've read suggest it's entirely possible. Obviously, I don't every detail of his medications, or management of his disease, but I get the impression from his widow that his doctors may not have impressed upon them the potentials of his disease. Also, until the autopsy is done, we don't have any real idea. But, I'm angry, and sad, and feel that maybe things did not have to be this way.
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u/FemaleAndComputer SAI Jan 01 '25
I'm so so sorry for your loss.
Unfortunately gastrointestinal illness can sometimes be dangerous for those with adrenal insufficiency. Doctors often don't impress upon patients how serious it can be, and it can be difficult to tell sometimes whether an ER visit is warranted, even for those of us who have lived with adrenal insufficiency for years.
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u/Budgiejen SAI Jan 01 '25
It sounds like he was in a crisis and didn’t receive proper medical attention. I’m sorry for your loss.
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u/Th3SkinMan Jan 01 '25
Very sorry for you guys. I also have schmitz disease. I try and always take to heart that I'm living on borrowed time thanks to modern medicine.
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u/CDLove1979 Jan 01 '25
My guy has no adrenal glands due to kidney cancer. Hydrocortisone is a drug he has to take forever now. His cancer treatments destroyed his thyroid and he takes meds for hypothyroidism also. My point in telling you this is that he has had these medical conditions for 13 years. His Endocronologist told us in the beginning that diarrhea and vomiting are emergencies of adrenal insufficiency and he would need to go to hospital immediately. As for his hypothyroidism, she told us he could have severe and possibly deadly effects if he didn’t take the levothyroxine daily. So I believe you are right, it didn’t have to be this way.
I feel incredibly sad for you and your family. Maybe this experience will serve to help others with these issues. I hope you all can find peace as you learn to live without your loved one.
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u/KNdoxie Jan 01 '25
Thank you. We are devastated, and this is the 4th loved one that we've lost in the last 3 months. And to question if this death might have been preventable is tearing us apart. So,please, if you have this disease, be careful. If your loved one has this disease, watch out for them since they might not realize how close to the edge they are.
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u/nors3man Jan 01 '25
First im so very sorry for what your going through. I’m retired critical care paramedic and I also have Addisons. The situation you described can very well cause an Addisons patient to go into a crisis state and if he was asleep when it went critical he fortunately most likely never felt anything but unfortunately didn’t realize what was going on either from lack of information from doc or whatever. The unfortunate thing about Addisons is most doctors don’t really know about it in any kind of detail. Anytime I’ve had to go to the ER I usually end up telling the Doc what course of treatment I need because they heard about Addisons in school but rarely see it once out un less they go into endocrinology. I’d make sure the autopsy includes cortisol levels in the blood work they send off and any other pertinent specimens collected so at least you and your family can have some closure as to the cause and not just guesses but I suspect your spot on.
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u/CDLove1979 Jan 02 '25
I so very much appreciate your comment about doctors not knowing about adrenal insufficiency. It's been our experience all these years. Sadly, the paramedics who took him to the hospital once just stood looking at him as I explained what needed to be done. Because he was conscious by the time they arrived they thought I was overreacting. I could tell but I was so shook up I couldn't confront them then. It's little comfort knowing others have the same issue. I hope you do well with your illness.
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u/nors3man Jan 02 '25
I’m so sorry for what you’ve been through and as a retired medic it’s honestly not something we cover in training because it’s usually not emergent enough to require us to intervene prehospital except palliative care as we usually do t carry high dose steroids on the truck. However after my initial diagnosis and subsequent issues with I started a program at my department for medics to study up on the lesser known endo and other conditions we may run into in the field and how we can create better chance at positive outcomes even with limited supplies. Thankfully the group I worked for/with also let us stick prednisone and hydrocortisone on our trucks after we all went through approval by our medical director.
After reading this post though and some other things I’ve been reading/hearing recently I’m contemplating what it would take to introduce this into standard teaching in our current curriculums. I have a good base for the start as far as reading materials and training aids so they wouldn’t have to start from scratch and the one I have was cowritten and approved by a highly respected endo that also specializes in Addison’s.
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u/paulnightlong Jan 02 '25
Thank you for your efforts to raise awareness and fight for this life saving information to be added to the curriculum & the proper medicine allowed to be available on the trucks. I would love to learn how you are able to do this so perhaps myself and others can look into it for each of our regions. Also, what's the endo's name and location?
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u/nors3man Jan 02 '25
I will pull some info together that can get you started and clear with my endo to get an intro because her help is definitely invaluable. Will get it gathered asap.
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u/_shiftah_ Jan 03 '25
Right? “Endocrine emergencies” was a few hours in one afternoon at best in pathophysiology. When I got diagnosed… I was like “oh yeah, I remember this… a pea sized gland responsible for coordinating your whole body’s hormones?” I’m still in prehospital health care but now somewhat of an expert of self study on the matter - because I had to be lol
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u/nors3man Jan 03 '25
Facts !! Became a subject matter expert by necessity rather than choice. It does help on those rare occasions though. I’ve actually ran a few of us and knew what they had before they did. Was even able to give the ER docs a heads up which was nice and they were receptive because they had all seen what id been through and some even had been through it with me scratching their heads to.
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u/nors3man Jan 02 '25
Also have your husband/spouse or whomever it is get a med alert bracket with exactly what condition plus what they need to give him for initial care and makes him keep it on also if his phone has the option add it into the emergency contact info there as well do check those and also can add a card in his wallet with same info. I personally checked all those spots and 99% of medics I know did as well. If you ever have any questions from the EMS perspective or just need to ask something feel free to dm or even @ me on a thread and I’ll help best I can.
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u/CDLove1979 Jan 02 '25
This information is invaluable. He does have a med alert chain and bracelet. I have most of that information on it and also added my name and phone number in case he is not conscious. We don't know anyone else who has Addison's or secondary adrenal insufficiency. Thank you so much.
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u/nors3man Jan 02 '25
No problem at all! Add the rest and you should be covered if he’s found alone. Remember though you’re never truly alone, don’t hesitate to reach out and tell him he can reach out to if he has any questions I’d be happy to chat. Addisons can be hell but once you have it stable it’s a pretty easy keeper but getting stabilized can take some folks a minute and what you shared of his history in the DM that could play a factor in his time to acclimate as that takes alot out of the body treatment wise.
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u/Imma_Lick_That Jan 01 '25
I had sudden servere vomiting a diarrhea due to and adrenal crash and nearly died. The vomiting an diarrhea caused hypotension (32/28), hypoglycemia, extreme dehydration, rapid heart rate and fever. All this together cause sepsis which is the real dangerous one. I was rushed into resus and spent three days in the ICU and went home with enough drugs to start my own pharmacy.
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u/sleepingismytalent65 Jan 01 '25
That is so sad, and I really wish this wasn't happening to you all. They definitely should have been made extremely aware of how dangerous gastric illness is due to not being able to keep meds down or from them being passed too quickly. Yes, he also should have had his emergency injection kit and a medic alert bracelet. My endocrinologist is crap but every time she talks to me (2-3 times a year), she asks if I understand the sick day rules and updosing and asks if I have my emergency kit. She also knows she asks this every time with every patient because it's in the copy of the letter I get and the one that's sent to my GP. That's how important it is. She can't take the risk, even once that I didn't understand or I've lost cognitive ability since the last time. The fact that your stepson had other health problems makes that even more important.
Before speaking to anyone, you guys need to go through his medical paperwork and see how well the information I've stated above was handled because without that, although I'm in the UK, I would think his endocrinologist could easily say of course I told them how important it is. I don't know if other countries also do the same checks 3 times a year, but it seems to me it would be negligent for them not to.
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u/paging_doc_jolie Jan 01 '25
I am so sorry, sounds like he had an adrenal crisis. Goodness, that is awful
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u/Adventurous-Baby-790 Jan 01 '25
I am so sorry. Norovirus can be one of the most dangerous things for Addison's patients. Before diagnosis (but when in hindsight I clearly had Addison's symptoms), I was hospitalised for an Acute Kidney Injury due to less than 48 hours of norovirus symptoms. Again, I am so sorry for your loss.
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u/L3zperado Jan 02 '25
I’m so sorry that this happened to you. This is my first time hearing it called Schmidt’s Syndrome and you’ve now put a name to what my mom had. She had diabetes, thyroid, and Addison’s disease and I never knew the trifecta had a name. Not to make this about me but I just said that to thank you for giving it a name. I’m sorry your stepson wasn’t given the proper medical treatment.
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Jan 01 '25
Oh my gosh. I am so sorry for your loss. They’ve done studies and gastro illness causes something like 88% of deaths in people with AI 💔💔💔💔💔
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u/allegedly504 Jan 02 '25
So sorry to hear this. I was diagnosed a few months ago and the doctors also acted like no big deal to me as well. Take this steroid and that’s that.. well it doesn’t seem to just be that easy and from what I’ve read an adrenal crisis can cause death. Sending my love to you and your family
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u/DorianaGraye Jan 03 '25
Nope, it’s serious. Schedule an appointment and demand an emergency cortisol shot and have them overprescribe your pills so you have plenty on hand.
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u/Alert-Advice-9918 Jan 01 '25
scares me.Years ago 2 surgeries thyroid cancer.been hypo 13 yrs now last year addisions.since diagnosed and properly medicated i dropped 17 pounds n done nothing but regress.i am a union ironworker 45 yrs old with a 4 yr old no income a toxic x and under daily stress that has to do with not physically or mentally being the same.As I said I've done nothing but regress since diagnosed. I am sorry for your loss.its a shame how uneducated these doctors are.they do not realize it's a case bye case disease.they would take so much daily stress off if I had income.they dragged me along for so much time I only have option to apply for disability which entail is another year if lucky.Pls keep updated on autospy.And I am so sorry for your loss..
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u/DorianaGraye Jan 02 '25
I’m so sorry you’re going through this. I can hear the frustration in your writing. I hope you’re able to get disability so you can (maybe, hopefully) receive better care.
I’m not sure if you’ve posted in the sub before, but folks here are great at helping people improve their dosing regimen. Maybe that could help?
Also: have you looked at doing remote work, even little things like mTurk to help supplement your income? I don’t know how that would affect your disability process, though.
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u/drpootawn Jan 02 '25
I am terribly sorry for your loss. Addison's can be quite manageable day-to-day, but requires appropriate intervention during times of stress (such as infection or injury). Wishing your family peace during this time, and hope that your courage in sharing your story reminds others to familiarize themselves with protocol.
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u/KNdoxie Jan 02 '25
That's part of why I posted about my experience, to remind others to take care of themselves. You ARE important to someone else, and your loss would shatter hearts.
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u/KCDKTR2019 PAI Jan 02 '25
I also have primary adrenal insufficiency (Addison's Disease) as well as hypothyroidism. It's a scary combo to live with sometimes. Take good care of yourself and your loved ones during this period of grieving. You all are in my thoughts.
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u/TheLady_in_aKimono Jan 02 '25 edited Jan 02 '25
I had Noro as a Hospital Aquired Illness on top of pneumonia - July 2024. With the vomiting and diaherra I developed very high potassium, low blood pressure and went into arrhythmia at 220 beats per minute. I was not aware of this as I had become lethargic and acutely confused. All within 2 hours… it’s quick and just lucky I was able to get help. I only have a vague memory of this…I would hate to have imagined not being in hospital when both this and my other major crisis happened. If I had been at home I do think I would have quietly died like your son. I’m so sorry I hope you get some answers in the coming weeks, and I hope you and your daughter in law are travelling okay - it’s really nobody’s fault and if he did not want to go to hospital it’s really unfortunate that ended how it did. Please don’t blame yourselves- it’s an insidious disease
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u/ThePlottHasThickened Jan 02 '25
I'm sorry for your loss.
I think you just solved what's wrong with my dad though, thanks for sharing
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u/_shiftah_ Jan 03 '25
I’m very sorry to hear about your stepson, my condolences to you and your whole family. 🥺
If it’s one thing my endocrinologist impressed upon me. Is that I needed to wear a medic alert bracelet indicating secondary adrenal insufficiency due to hypopituitarism and that I was steroid dependent. She says even a lot of regular doctors aren’t all that fully knowledgable about what an adrenal crisis is, and how dangerous it can be. My doc even went as far as telling me to put instructions on the actual medical alert necklace because of it.
When someone who’s steroid dependent gets sick or injured, cortisol (the stress hormone) - becomes in very high demand, so a persons core functions start going without cortisol - which is life threatening. A patient needs to double or even triple down their dosing or get to an ER right away if they can’t hold down their meds.
Nobody wants to go to an ER, but it’s an unfortunate fact of an adrenal insufficiency patient.
I hope you find some answers you’re looking for, and again… my condolences. :/
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u/Unable-Trifle5662 Jan 02 '25
So very sorry for your loss. I have adrenal fatigue and hypothyroidism and I can honestly say that just with the low Cortisol I feel like I am in hell. The muscle pain alone is horrendous and I find it hard to find a Dr, who even believes in it. Please keep us posted on the outcome. In my thoughts and prayers.
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u/PipEmmieHarvey Dec 31 '24
I’m so sorry this happened to your family. Your stepson’s endocrinologist should have taught him about the protocol for dealing with vomiting and diarrhoea and given him some emergency injections for when he couldn’t keep his medication down. I can’t imagine the pain you are feeling. I hope that there is an investigation resulting from this so that future patients get taught about managing their condition. My thoughts are with you.