What is the weirdest D or non-D thing your endo has said?
Just had my quarterly endo appointment. He spent a not insignificant amount of time discussing what technology would have to be invented in order to do a remote rectal exam on an astronaut in space.
Holy hell you lived a charmed and interesting life. I feel insignificant in comparison. The weirdest conversation was when my son asked me to stop talking about research papers with the endo. Apparently we geeked out and spent most of HIS endo time discussing research papers, and his appointments need to be more about HIM.
Two things stand out for me. The first time I started to lose a little faith, was when an endocrinologist told me I shouldn’t let (type 1) diabetes run my life. I had been recently diagnosed and having wild swings in my blood glucose readings because my insulin dosing was way too high and every time I corrected with the (recommended) dose of 15 carbs of orange juice, I seesawed the other way. Felt horrible all the time.
The second time, just this past year, a different endocrinologist recommended I change my insulin to carb ratio to 1:30 so I would stop having lows. That would certainly have resolved that issue, my current ratio is 1:9 with an average daily dose of 17 units.
Learned 4 years ago (diagnosed 5 years ago) that I was my best consultant about how to best treat my diabetes. Largely with the help of forums such as this one…and lots of research. My last A1C was 6.1, With a time in range consistently at better than 85%.
Totally agree with you on this one. My son would do the same. Now if he has a subtle (not steep on a CGM) low he treats with 4-5 carbs and waits it out. If he needs to treat with 10 more carbs, he gives insulin along with the carbs, despite being low. It is the only way he can manage to avoid a ridiculous rebound high to 250-300.
Welcome to our community, thanks for posting!
When diagnosed at age 5, I went to pediatrician, not endo (until I went to college). But he always greeted me with a funny name, pretending that he couldn’t remember my name. Most often was George, and I chuckle now any time I meet a George!
That is truly an elite level action. Not many people have figured out to do that.
That’s AWESOME! I’m learning a lot from the forums. I haven’t had a weird conversation with an Endo yet. I’ve only ever seen one and it was for a short time before my insurance termed in April of last year and then I came off everything all together until April of this year when I had insurance start with my new job. I will be seeing a new Endo on July 7th.
My very first endo I was seeing bc I was diagnosed with Graves Disease (pre D dx). I was an absolute mess. I was going through radiation treatment and I couldn’t stop crying in his office. He looked at me sternly and told me to “Stop crying and Buck Up. Stop being such a baby!”
(he was supposed to be “the best” endo in NYC)
I never went back.
I don’t have anything outrageous. But the one piece of advice I really can’t understand is my endocrinologist recommending I not take Humalog with dinner about 20 years ago. I think I was having a lot of lows that he wanted to try to prevent, and he was seeing whether NPH would cover dinner. But I still have my logbook from back then, and of course every time I ate dinner without taking insulin, I’d skyrocket into the 14-18+ mmol/L range by bedtime. I’m fairly sure that was a pretty short-lived suggestion and he changed it to taking Humalog again at dinner at the next appointment.
Wow, that’s so rude! Graves’ disease seriously messed with your emotions. I was alternating between being full of rage at everything and crying at nothing when my thyroid was too high. My Graves’ has been stable without medication (remission) for about a year and a half now, but today I was uncharacteristically frustrated and enraged at everything, and it reminded me of pre-diagnosis days (I think it’s actually just the state of the world right now).
I experienced a similar result; after the finish of my radiation treatment, it took about 1.5 to 2 years before I needed to go on medication. I started out on a rather high dosage, but over the years it has come down considerably, and to this day continues to come down. this totally baffles me, as I would think that it would go in the opposite direction.
The crazy part is, I had no radiation treatment. I took Tapazole to suppress my thyroid for three years. The radiation treatment was offered to me twice during that time, but I turned it down. It sounded way too involved (too many appointments and blood tests), and I was feeling good on Tapazole and was worried that having my thyroid out of whack after the radiation treatment would make me feel terrible again. My endocrinologist seemed more flexible than most in allowing me to decide which treatment I was comfortable with, so didn’t push the radiation treatment at all. I was prepared to spend the rest of my life taking Tapazole unless it stopped working, I got side effects, or got pregnant… But after those three years, my thyroid suddenly went into remission and I no longer needed it (and that whole process was terrible while my thyroid was out of whack again). My endocrinologist was just as surprised as I was, because it’s very rare for that to happen after needing Tapazole for such a long time.
I wasn’t actually offered anything but the radiation (except surgery, which really sounded awful bc of the potential risks and poor outcomes). But I was indeed very very ill way before I began the radiation treatment. I weighed less than nothing, I had terrible heart palpitations, I sweat constantly, I couldn’t hold down food, and I had Buldging Eye Syndrome (kind of like what Barbara Bush had but worse).
I was put on many medications; one specifically for my heart bc they thought I might have a heart attack, then prednisone for my eyes, pain killers, and some other things I don’t recall now. I suffered from double vision and had to wear special eye glasses with prisms in the lenses just to see clearly.
Once I went into remission, though, I was able to have corrective surgery on my eyes. now I hardly ever need to wear glasses (just to read)! Wow! what a comeback.
unfortunately, though, this endo was not the one who caught my Diabetes in time. he completely missed it. Perhaps bc it was happening concurrently. I don’t know.
Luckily, I only had symptoms for perhaps a month before I was diagnosed. Most of what you mentioned, plus a few more, except no eye issues other than irritated-feeling eyes. I knew I wasn’t feeling right, but I had no idea that all the various symptoms I was having were all related. One day I found myself struggling to lift a 4 L jug to pour from it because it felt so heavy and my hands were so shaky, and figured that was not normal, so made an appointment with my GP for the next week.
A few days later, though, my heart rate was going crazy and I felt so weak and horrible that I went to emergency. They monitored my heart and after several hours figured out the issue was my thyroid being completely out of whack. They kept me overnight, and offered to admit me for a couple of days, but I declined. In hindsight, I would have preferred to be admitted, because I ended up taking several weeks off work, and the two days after my hospital visit ended up being running back and forth to the hospital anyway to get ultrasounds and echocardiograms and such, so it would have been far less exhausting if I’d just stayed in hospital. They put me on Tapazole (to suppress thyroid from making so much hormone) and propranolol (for my heart rate). Two weeks later, I ended up in emergency again, because I still felt so bad. Luckily, I was already seeing my endocrinologist for diabetes, so I just followed up with him a few weeks later. Definitely an unpleasant experience.
From what I’ve read, it seems radiation and surgery are much more commonly used in the USA, for some reason. Here, it seems they do medication first and do radiation if the medication is still needed after a couple of years, and surgery only as a last resort if there’s some extenuating circumstance. My endocrinologist said that he was more flexible than many on the radiation issue, he said a lot of doctor might insist on it, but he was willing to leave the decision up to me (he’d already been seeing me for years for diabetes, so I’m sure that may have influenced him).
I took this as well. It helped my breathing and kept me from having a heart attack. UGH. so sorry to hear ur story. I didn’t go to a hospital at all, ever. I had everything done in a private office specifically designed for radioactive procedures. lots of big scary machines. tracer drugs, etc.
