from Hacker News

Bedridden for 11 years, he discovered a surgery for his adrenal condition

by actraub on 7/27/19, 11:28 AM with 142 comments

  • by disabled on 7/27/19, 8:03 PM

    Wow. I actually have a lot in common with this dude. I have a very rare disease that causes autoimmune autonomic failure, which was initially blamed as "diabetes complications", due to type 1 diabetes.

    I was always suspicious it was something else, as it started when I was diagnosed with type 1 diabetes at age 5. I was constantly scavenging the medical literature when I was in college.

    At age 22, it got out of control and I was in and out of the hospital. I came across a journal article and I realized that there was nothing about this disease that could eliminate it as a possibility. I knew I was screwed.

    My blood was sent to the only lab in the US that tests for it. It came back positive.

    Now, in the past year, at age 30, after trying about 10 treatments, including in combinations, I am finally in remission.

    I am back in school finishing my electrical engineering degree. I am a senior undergrad. I have a new lease on life. I never thought I would be doing this well!

    EDIT: My diagnosis story is here. But, I was not doing as well as I am doing now, when I posted it: https://rareandextraordinarycom.wordpress.com/2016/05/14/fir...

  • by dreamcompiler on 7/27/19, 5:22 PM

    Related: A great article on HN member mattmight a few days ago. Matt's a brilliant computer scientist and teacher who was inspired by his son's condition to switch careers and investigate rare diseases full-time.

    https://www.statnews.com/2019/07/25/ai-expert-writing-code-s...

  • by joshgel on 7/27/19, 4:08 PM

    > Lindsay suspected his body was producing too much adrenaline. He knew of a drug called Levophed, which is approved by the US Food and Drug Administration to raise blood pressure in some critically ill patients. Levophed is basically an injection of noradrenaline, which counters the symptoms created by excess adrenaline.

    This is incorrect. norADRENALINE is a more specific version of ADRENALINE made in different parts of the body (and which also acts as a neurotransmitter). outside of nerves, noradrenaline acts on alpha receptors which among other things constrict blood vessels to raise blood pressure (it is used for this in critically ill patients). adrenaline acts on the same alpha receptors, but also targets beta-receptors which have the effect of speeding up and increasing the strength of contractions in the heart (also used in critically ill patients with low blood pressures and whose hearts aren't pumping enough). Epinephrine is another word for adrenaline.

    > As Lindsay delved into more medical literature, he found only 32 recorded cases of bilateral adrenal medullary hyperplasia.

    I don't have numbers to counter this off the top of my head, but congenital adrenal hyperplasia is a rare syndrome, but still common enough that it is taught to every medical student and tested on our boards repeatedly.

    obviously, im somewhat skeptical, but i guess that plays into his hands since I'm part of the 'establishment'. Hard to know without more medical details, which are glaringly missing from any stories I can find about him...

  • by vladus2000 on 7/27/19, 5:05 PM

    I went through an annoyance with my vision. I ended up having two separate conditions (well a total of 5 things were wrong with my eyes, but two acive major ones and two that will eventually cause more surgery later but aren't a big deal yet and one that was minor), but because the first one seemed like it was causing the problems, it took me almost a year to find and get real treatment for my issues so I could be able to see properly again. It was really depressing as my vision just kept getting worse and eye doctors were not helping. Right before my surgery my eyes got to the point I couldn't legally drive (bear in mind that I was under 40 at this point) even with glasses.

    I just kept trying different doctors until an intern assistant to one of them saw the actual issue and got me referred to an awesome specialist who confirmed the diagnosis (and found the other problems I had not known about yet) and got me to a surgeon who did surgery to fix it. As a result of this, I strongly distrust doctors and I think they can sense that when I see them.

    For those more curious, I had Idiopathic Intracranial Hypertension as I am rather large. Due to being large and doctors being able to see that problem, they just assumed it was the issue and they never looked at anything else. They put me on NASTY drugs to fix the issue, but my eye sight just kept getting worse. I have no idea why it took an intern to see the problem, but in the end I had ABMD (also known as Map-Dot-Fingerprint Dystrophy). I believe a total of 6 eye doctors and two neurologists completely missed it. I really should have gotten the intern's name and properly thanked him, as who knows how much longer I would have had to go without a diagnosis. IIH can cause blindness, as it will slowly destroy your vision (or in some cases quickly), so I kinda understand why they may not have seen it, but from what I have read, it sounds like ABMD is pretty easy to see if you look for it, and none of the real doctors did.

    So I hope no one out there ever has multiple problems causing similar symptoms, because doctors can't be bothered to think about that possibility, at least eye doctors.

  • by IAmGraydon on 7/27/19, 1:26 PM

    I don’t understand why it took so long for him to get this diagnosis. Elevated adrenaline levels are easily tested for in a simple catecholamine blood test. That test is among the basic panel done when one sees an endocrinologist. It may not have pinpointed his adrenal medulla as the problem, but it should have pointed them in that general direction very early on.

  • by salex89 on 7/27/19, 6:40 PM

    Wow... Just wow. My girlfriend is a internal medicine specialist student and she was blown away. As she read she basically went through a ll possible explanations that the other doctors had. However she actually knew about this condition, it is extremely rare but not unheard of. Possibly because of cases like this she learned about them, but she said she would never connect that to something looking so neural, it is expected for it to induce cardiological issues.

  • by melling on 7/27/19, 1:20 PM

    I wonder if organizations with a living founder who has a specific disease are more effective at investing for cures.

    Michael J Fox helps cures Parkinson’s:

    https://www.michaeljfox.org/

    Augie Nieto with ALS:

    https://augiesquest.org/

  • by trollied on 7/27/19, 5:55 PM

    If anyone else reading this thread has ever felt, or is currently feeling, utterly dog shit, it could just be stress.

    I had kidney pain, chest pain, migraines, felt sick constantly, fatigued... I look after myself. I run, rock climb, eat ok, not overweight. The doctor was very worried, gave me anti-sickness tablets as a first thought, ordered every single test imaginable.

    It was just stress, I didn’t think work was doing that to me.

    Had some conversations with HR, top management listened, unrealistic dates shifted. I got better almost overnight.

    I’ve read a number of comments here that possibly could be the same, so I hope this helps somebody.

  • by DoreenMichele on 7/27/19, 4:52 PM

    In it, he found an important passage discussing how adrenal disorders could mirror thyroid disorders.

    A former RN told me that adrenal and thyroid issues are interrelated. That was useful information for me.

    I'm a bit surprised and taken aback that the article kind of implies that many medical practitioners aren't aware that thyroid and adrenal issues can be similar or connected.

  • by _fat_santa on 7/27/19, 3:46 PM

    Just wow.

    It's interesting to see the parallels between his story and the story of others who became entrepreneurs. I see so many stories of entrepreneurs finding a problem with their life or in the world and then fixing it. This guy took it to the extreme and managed to fix a medical alignment within himself all while bedridden.

  • by shgidi on 7/27/19, 5:06 PM

    Love to hear anyone more people who invented a cure for their own illness

  • by johnchristopher on 7/27/19, 12:39 PM

    So, is it related to adrenal fatigue which is not yet fully recognized AFAIK ? Would it help ?

  • by RandomGuyDTB on 7/27/19, 10:48 PM

  • by Mc_Big_G on 7/27/19, 3:53 PM

    Doctors were baffled. Treatments didn't help. And Lindsay eventually realized that if he wanted his life back, he would have to do it himself.

    This applies to almost any health problem you might encounter in the US. It's rare to find a doctor who actually cares and even more rare to find one that will dig deep to help you.

    One of the greatest lies ever told is that you can trust your doctor and that there isn't more you can do if the doctor says so.

  • by xiaodai on 7/29/19, 3:05 PM

    What a remarkable story!!

  • by bollockitis on 7/27/19, 12:48 PM

    Remarkable story. It's amazing how closed-minded "experts" can be. I suspect there are many conditions that will eventually be understood thanks to the hard work of people who approach these illnesses with the curiosity of a scientist instead of the hubris of an "expert."

  • by bjpirt on 7/27/19, 12:09 PM

    Wow, that's a particularly nasty clickbaity headline. He only dropped out because of the disease that caused him to be bedridden for those 11 years.

    Maybe "Student was bedridden for 11 years..." would be more accurate.

  • by unityByFreedom on 7/27/19, 12:48 PM

    This is an incredible story. His mom had the same undiagnosed, unfixable problem. The gist is,

    > If he could cut out the medullas of his adrenal glands -- sort of like slicing into a hard-boiled egg and removing the yolk -- his health would improve.

    > Eventually he recruited a surgeon from the University of Alabama-Birmingham. In September 2010 Lindsday went to the university hospital, where the doctor successfully extracted one of his adrenal medullas.

    > Three weeks after the procedure, Lindsay could sit upright for three hours. By Christmas Eve, he had the strength to walk a mile to church.

    > But progress was slow. In 2012, he underwent a second surgery at Washington University in St. Louis to remove the medulla from his remaining adrenal gland.

    > A year later, he was well enough to fly with friends to the Bahamas. It was the first time in his life the Midwesterner had seen the ocean.

  • by aaron695 on 7/28/19, 5:47 AM

    I don't believe this, but there's not enough info out there online to tell.

    Article from his experience before surgery in 2010 -

    https://www.riverfronttimes.com/stlouis/is-there-a-doctor-in...