I recommend people keep a meade composition book for medical journals. For me, it allows me to write down everything the doctor says, write down questions as they occur for my next visit (if I don’t write them down as I think of them, I forget them by the next visit) and keep good stats. In particular this was useful post-surgeries, as I was often on pain meds that made my memory weak (age is causing that now too… :)). My one doc is so used to my journal now that he does his exam, types his stuff into my records and then turns to me and says: OK, now lets get your questions out of the way. He almost seemed disappointed last time when I had no new questions.
When one sees as many docs as I do (well, used to, anyway, now I mostly only see my GP), it is nice to not have to wonder if they are all communicating correctly. I *know *what was said by each of my docs because I have it in my notes. It has proven useful for dealing with insurance as well. I like the composition books because the pages don’t come out too easily and I don’t ever have to worry about missing pages. The level of details I have about my health always seems to astound my GP - she both teases me about it and tells me she is glad I do it.
When I spoke to the surgeon who removed my stomach, he grinned and said: *5 hour energy? That one is new. *He read the label and then shrugged and said: *Some of patients get by on supplements, some need shots. *Neither the regular pills nor the sub-lingual ones seemed to be enough to keep my b12 levels normal. I asked him what the difference was between them and what I take now, but he didn’t have an opinion.
Technically he didn’t *remove *the stomach, but instead attached my esophagus directly to the small intestine. (This always freaks the techs out when I have an upper G.I.) The stomach takes nothing in, but still drains into the small intestine. I asked him why he didn’t take it all the way out and he said that one reason he kept it in was because the stomach creates intrinsic factor, which binds to b12 for absorption. Due to the plumbing arrangement, the binding is not as *efficient *as it might have been when my food passed through the stomach, but some binding still takes place as it all passes through the intestine. Looking it up, I found that he dumbed it down a little for me.
My GP never offered the option of me doing my own shots - I might have considered that. Driving out to her office once a month as annoying. Less so now that I work from home, but harder when I was working an hour away.
I’m glad they found your problems - wishing you continued success in your recovery.
It never crossed my mind to keep my own notebook. I do have a copy of my entire set of records from years ago from a gastroenterologist who moved out of the area. I asked him for them before he left.
Interestingly, your description of your situation, especially your use of the term “intrinsic factor” led me to do some googling. I think I now understand exactly what is going on with me and why I have this defeciency!
It’s related to intestinal surgery I had decades ago. I’m surprised, and a little pissed, that my surgeon and other physicians at the time didn’t recognized the possibility and have me tested for B12 deficiency. To be fair, maybe the issue wasn’t as well understood then as it is now. It’s also possible that they were testing me and getting the false negative.
I know that my current physicians haven’t been testing me for B12 but I don’t really blame them because they probably aren’t totally aware of all the details of what was done at the time.
This has probably been a lingering issue for a long time and was only revealed by symptoms of long term deficiency.
About a decade ago I found myself in the hospital on an emergency basis (long story). In the tote bag I had amongst my possessions was a little notebook where I usually kept lists of things to do, etc. I wrote down what the docs told me, what meds they were giving me and what they were for (even drew pics of what they looked like–I’m an artist and can’t help myself–LOL!).
The doc reduced the dosage of one of the meds after several days so the pill changed. It was a med where you had to be weaned off of it, rather than totally stop. When the tech brought me the old looking one, I wouldn’t take it and told them to double-check my records for the dosage. I had it right there in my notebook what the dosage was changed to and what the new pill looked like (I already had had one so I knew). I checked my meds every time they gave me anything. Yup, I was right. They apologized and made the correction. Fortunately, it wouldn’t have hurt me, just taken me longer to get weaned off that particular med.
One a.m. I had to have a fasting blood test. Everything went fine and I wrote the results. The next a.m. a tech came in to do another fasting blood test. I asked if he was sure? I just had one yesterday… please double check. LOL! Yeah, again I was correct and again it wouldn’t have hurt me to have a little blood drawn, but still…
I know I’m sort of waking up a zombie here but I started the thread and this is a relevant update.
I saw the neurologist today for a followup and had another EMG. Every nerve that was abnormal the last time shows significant improvement. I’m not completely normal yet but things are improving. I guess this means the B12 shots are working.
They apologized and made the correction. Fortunately, it wouldn’t have hurt me, just taken me longer to get weaned off that particular med.
