You ALWAYS need a copy of your labs.

Spiky Bugger

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Jan 5, 2014
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(If you have online access to your labs, print a copy of everything and then ignore most of this.)

Right now, I want to drop kick my sister and my daughter. They both TRUST their doctors' offices to contact them if anything is wrong. Are they crazy? Yes.

The First Reason

The parable...well, here's one woman's inquiry from 15 years ago:
http://articles.latimes.com/2001/feb/24/local/me-29815

If you don't click on links, here's the deal: A medical practice, aka "a business," filed bankruptcy. (I wonder if a friend's $1m+ malpractice case contributed to that.) They had served 300,000 patients. Some of those people needed surgery and their records and lab results were part of that equation. But once the bankruptcy was filed....those items, which were "property" of the practice, were no longer available to the patients. A business they had never heard of OWNED their records and their lab results. They were as much under lock and key as the waiting room chairs. And they had value--they could be sold to the patients--to their new owners. Surgeries were cancelled. Pre-op testing had to be redone. It was a local disaster. At that point, one of my doctors started handing patients a hard copy of the record from each visit. You just never know.


The Second Reason


A real life possibility: You have your routine labs done 2-4 times a year. A few months after the last set, a routine test for a non-lethal situation also reveals a problem you never even considered...an incurable disease you have never thought much about. Oh, my. You're dying? Well then, you need to find a specialist to figure out what is happening...and wait for an appointment...and testing. While you wait, you hit the intewebz and read that people who have that particular incurable disease also have certain results on lab tests...such as, calcium, protein, BUN, creatinine, etc that are out of range.

At that point, would you rather hope that if any if those things had been out if range--or were even "heading" in that direction compared to, say, a year ago--someone at your PCP's office would have called you? Or would you rather have a hard copy of your last labs, in your hand, to check on those items right away?


The Third Reason


After my recent iron infusions, I asked my oncologist-hematolgist's assistant for a copy of the post-infusion labs while I waited for the doctor. Hmmm....no iron results...no ferritin....no TIBC. He arrived and readily admitted, and apologized for, not checking the right box. I needed a second blood draw. And...he knew that I knew that I needed a second blood draw. A "lesser man" might have gone with the CBC and CMP and shrugged off the most important testing until a future appointment, assuming that all that iron must have helped. But a week later, I knew for sure.




I'm just sayin'... All you have to do is say, "Will you please print out a copy of those labs while I'm in seeing Doctor? I need to take a copy home with me."
 
Most of the hospital systems now have online portals that store your results and show trends. I NEVER , I REPEAT NEVER, TRUST a Dr or the hospital to tell me if a lab value is out of whack. I can't tell you how many times I have been told that my labs are fine only to get home and see I am out of range on one to 10 of the items being tested.

Case in point - I went to the ER in September of 14 with bad abdominal pain and after 3 days of being NPO and liquid diet the dumbasses wanted to send me home because I was okay after "eating" liquids. I said do you think that once I eat solid food the pain will come back as it has been for a week? Oh yeah, good idea we should do that...yep pain back...surgery the next evening and the intestinal hernia fixed. Fast Forward to day after and when they were discharging me (my BP and HR were very low the night after surgery but fucking alarm bell there...as you will see) and the APN is in the room looking things over to sign the discharge. I asked her, so my labs are good. Your copper and zince are low so you should start taking iron, zinc and copper. .....me.....Okay. I get home and see the lab values show up on my portal. Are you kidding me? Iron and Ferritin both at high end of range and the stupid woman told me to take iron? Oh, my Total Protein and albumin were about 60% of the lower limit (yeah just a tad out so why be concerned). Really, your dumbass didn't notice my nutritional numbers were low and then put two and two togethe to figure out that the cause of my anemia and other elements was not from Iron deficiency but from Nutritional Deficit? Really your medically trained ass couldn't draw that correlation? Really?

Fast forward two weeks and I am getting dizzy, wobbly, weak as hell and feel like passing out. Hmm, yep back to the ER and I am admitted because my HR was about 35 resting and my BP was 70/40. Tests for three days and nothing really shows up so the guy puts me on a drug to get my BP up and releases me. A day later I am back. Cardiac tests for three days which show my ticker is good. So what is causing this? MALNUTRITION YOU STUPID FUCKS! Did you bother to check my lab values and see just how damn low my Albumin and Tot Protein were? Do I have to read the Merck Manual for your?

MORAL OF THE STORY: Labs tell you a great deal and for some reasons Dr's ignore things that are way out of range so YOU HAVE TO CHECK FOR YOURSELF and say HEY DOC DO YOU THINK THAT MIGHT BE AN ISSUE?

SPpkey is 100% correct. Check your labs and keep records so you can spikes up or down and trends. For whatever reason some Docs just ignore these things. If you can get your labs done at a place with online portals they store your results and you can see graphs, or data tables showing how ever many results you want to look at overtime. Having been a victim of this negligence and suffering the consequences I watch my labs like a Hawk so I can jump on something that is out of range because if you don't catch some of these early they are VERY HARD to get back in range. BE VIGILANT IT IS YOUR HEALTH!

I shall now step off of my soap box. Sorry, this stuff pissed me off and flat negligence by some in the medical community. OWN YOUR OWN HEALTH
 
YES. The frozen records from bankruptcy just happened to me. The owner of a dermatology practice died and his wife stopped paying the bills. My dermo was in the practice and had no idea until the doors were locked. Until my dermo could start his own practice, for TWO MONTHS I had to wait for botox booster. Que lastima! (okay okay not as serious as hemorrhaging from a leaking anastomosis but important to me) BTW your records are released to you after the bankruptcy court has finished its process -- it's not like they keep your records forever. I threatened legal action and was told that by the time that would get processed, the bankruptcy court would be finished and I'd have them anyway. (It was 90 days.)

Most docs scan lab reports for a flag (too high/too low) and ignore all the rest so they never notice trends until something lands in the danger zone. That's up to us.

My new PCP is a "lone wolf" (not owned by any hospital system, a rarity around here) so I can't view results online as I can with all my other doctors. (This also means other doctors can't look at the results online either.) She is also computer illiterate, so much so that she writes on a paper chart. I told her at the first meeting that I would want the complete lab report (my first draw was yesterday) as I would enter it into Excel and create graphs of trends... and then give her a copy. (She was excited about that.) Unlike my former PCP, she is on board with DS and agreeable to ordering labs so I forgive her her technophobia.

On my phone I have a diagram of the DS, my surgery report, and as of next week, my labs.
 
I am including here the "investigate" doc that has pages upon pages of things done to patients that are just unethical and illegal. The second is part of the bariatric references that I have.

I try to tell people on EVERY forum I am on, don't turn out like me when you have a "problem" doctor. The group will hide them because they make millions for the hospitals and you are garbage after surgery.
 

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I just want to add that my doctors never alerted me to a tumor on my pancreas that had been incidentally found and noted by the radiologist when I had a CT scan for an infection. The young resident who read my results was so focused on treating the infection that she neglected to read further down the page and/or to notify the doctor in charge of my case.

That meant I only found out I had cancer by reading through my medical records on my own, six months after the scan in which a tumor was clearly identified by a radiologist. I had to go back to doctor and ask "Isn't it bad to have a tumor found on your pancreas? Should I seek a biopsy or treatment or something?"

Always get a copy and *read* your medical records and test results!
 
I only found out I had cancer by reading through my medical records on my own, six months after the scan in which a tumor was clearly identified by a radiologist. I had to go back to doctor and ask "Isn't it bad to have a tumor found on your pancreas? Should I seek a biopsy or treatment or something?"

Jesus, Mary and Joseph... I can't believe this. Oh wait, unfortunately I can.
 
I learned this lesson when my father was having symptoms that indicated that he might be having prostate problems. His doctor (and mine at the time) was dismissive because at 55 (almost 56) my father was "too young" to have prostate cancer. Dad insisted, was tested and two months later was in surgery because he had cancer. If he had believed the doc they would not have found it until it was too late. So you better believe that I have an Excel spreadsheet that I religiously track my labs in as well as a notebook that I carry with me to every appointment. I've been laughed/sneered at by doctors for doing this and I nod and smile. You might be the doctor, but you aren't in my body AND at the end of the day I am the one who has to live, breathe and work in this body so you will just have to put up with my "ridiculous tracking."
 
I just posted this on my Twofer thread - it's just about a UTI, but SHEESH!

I have called for the results of the C&S every day since Tuesday (except Friday, when I forgot to call). Every day they said they would call the lab and call me back. Not one time did they call me back. Finally, they called me back this morning (after yet another call from me). And finally admitted that my sample was "lost." I have to go back and give another sample today - at least I got the nurse to promise I wouldn't have to wait or be charged another copay.

I'm more than a little annoyed, in particular because I have the sensation that the infection is not completely gone.

Yet another example of why we have to be medical self-advocates.​
 
My dh and I have had to be our own advocates for a long time.

Dh has a condition called NPH (Normal Pressure Hydrocephalus) which can MIMIC Alzheimers. Typically found in the over 60 crowd, it can be found in a standard brain MRI. But the doctor/technicians reading the MRI have to be willing to SEE what they are looking for not just assume.

He was given an MRI back in 2004 (forget why now) and all the neuros, etc said it was fine. We even went to the Cleveland Clinic to see if they could help (waste of time and effort). Sometime in late 2005/early 2006, he saw a local neuro at the University of Toledo. Now they did a new MRI. The tech who read this one had not actually met my dh OR saw his birthdate on his file. It is the ONLY reason we finally got an accurate diagnosis. By the end of Feb, he had a VP shunt and getting much better.

When we moved from Michigan to Wilmington, NC in 2007, we went to a neurosurgeon for continuity of care...the neuro told him he was too young for NPH. I fired the neuro and on the way out, said...you are not willing to think outside the box. Not everyone fits IN the box.

But if we hadn't pushed and shoved for answers, we would never have found the reason for his issues.
 
I just want to add that my doctors never alerted me to a tumor on my pancreas that had been incidentally found and noted by the radiologist when I had a CT scan for an infection. The young resident who read my results was so focused on treating the infection that she neglected to read further down the page and/or to notify the doctor in charge of my case.

That meant I only found out I had cancer by reading through my medical records on my own, six months after the scan in which a tumor was clearly identified by a radiologist. I had to go back to doctor and ask "Isn't it bad to have a tumor found on your pancreas? Should I seek a biopsy or treatment or something?"

Always get a copy and *read* your medical records and test results!

That is absolutely heartbreakingly maddening.
 
Hilary's story is not unique, as I've had similar situation with things being seen in the kidneys on the scans, and not noticed or mentioned by the dr to me. I only knew when I got copies and read them myself.

I also have only had a dr mention something on my labs being out of range once, despite having some things being flagged by the lab as out of range several times. Some things are less urgent than others, true, but a vitamin D level of 6 should have alarms going off. And trends? forget it. They will never, ever spot that shit.
 
I just want to add that my doctors never alerted me to a tumor on my pancreas that had been incidentally found and noted by the radiologist when I had a CT scan for an infection. The young resident who read my results was so focused on treating the infection that she neglected to read further down the page and/or to notify the doctor in charge of my case.

That meant I only found out I had cancer by reading through my medical records on my own, six months after the scan in which a tumor was clearly identified by a radiologist. I had to go back to doctor and ask "Isn't it bad to have a tumor found on your pancreas? Should I seek a biopsy or treatment or something?"

Always get a copy and *read* your medical records and test results!
Holy shit Hilary. That is absolutely unacceptable and malpractice. Unbelievable. I feel terrible that they did that to you.
 
Hilary's story is not unique, as I've had similar situation with things being seen in the kidneys on the scans, and not noticed or mentioned by the dr to me. I only knew when I got copies and read them myself.

I also have only had a dr mention something on my labs being out of range once, despite having some things being flagged by the lab as out of range several times. Some things are less urgent than others, true, but a vitamin D level of 6 should have alarms going off. And trends? forget it. They will never, ever spot that shit.
Yes I have renal cysts that show up on CT that I had to find from my own reading of the radiology report.

My CT scan from the ER when I ended up having emergency hernia repair surgery said "can not exclude partial bowel obstruction ". They admitted me but told me that the CT came back clean. I find something visually every scan. The exception being a CT scan when I was having internal bleeding and they suspected an ulcer, said there was calcification in an artery in my heart. The ER Dr did tell me that. I followed up with my PCP and he said it has probably been that way for a while and most people my age have some calcification so he wasn't worried with the level that report showed.
 
Ugh. I wish it was easier to get copies of labs here in the UK! I had been lucky, but this last time (Dec draw) I am still fighting to get a copy as it is not typical to release info to patients. Total pain in the ass!
 

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