You Give Your Blood, You Pay the Bill, So Get the Results!

Do you know why I could report my lab scores in my last post? Simple: I tell my doctors I want a print out of my bloodwork results. For years I never considered doing this, but at some point I got fed up with throwing out my arm for yet another needle, getting the bill for the copay –and having nothing concrete to show for it.

Moreover, I felt that going from doctor to doctor there was a risk of no continuity, no history, no comparisons, no full use being made of the data available. And there were some oddities I felt needed investigating and explaining.

I’ve had conscientious doctors and I have had blunderers. And I’ve finally recognized the obvious (well, when it comes to adults, anyway):

No matter how good your doctor is, no one, and I mean no one, cares about your health as much as you do.

So get your results and hold onto them. It would be nice to have a Permanent Record, like the legendary thing that people my age always heard about in school (better not do x,y, and z: it will go on your Permanent Record), with all your health info, all that data collected at great expense, readily available, but there is no such thing. The best you can do is get hold of the few scraps the medical system is willing to give you — or to let you purchase.

You may not understand all of it (I sure don’t), but you can learn a lot on the net. The big thing though is to note any Hs [Highs] or Ls [Lows] or highlighted or checked lines, look at the normal range, and if your numbers are way off,  ask your doctor, what do these scores mean? If she says it is something to watch, then you watch it too.

This is what can happen if you don’t:

During my PBC diagnosis odyssey (see last post), I remembered some weirdness that went on when I was hospitalized with pneumonia five years previously in spring 2001. Gall bladder tests were ordered — for pneumonia? I never got an explanation and was too sick at the time to pursue it with either the family doctor who admitted me or the pulmonologist who took over. I had follow-up visits with both after my release, and neither discussed the tests. So I mentally filed it under weirdness. My family doctor quit practicing within the next year or two.

In 2006 I  decided it was time for a closer look. I went to the patient records archives at the hospital I’d been in, and I paid for records of my visit.

This is what I learned: Way back in April 2001, when I had pneumonia,  my alkaline phosphatase (ALP) reading was 445 (norm 39-118). Remember, elevated ALP is one of the, if not the, biggest red flags for PBC. What the doctors I saw in the hospital did was order an ultrasound and CT scan to check out the biliary tract and a HIDA (Hepatobiliary Imino-Diacetic Acid) scan to evaluate the gallbladder. The doctor’s notes for my last day in the hospital allude to waiting on HIDA results and considering an outpatient bone scan, but I never heard anything about these results or further studies.

These wouldn’t have diagnosed the PBC, but that’s not the point: when tests don’t show what the doctor is looking for, then those results should  prompt further investigations. Good doctors don’t just shrug their shoulders and forget the problem that caused them to order tests in the first place.

Moreover, I was never told my alkaline phosphatase levels were out of whack.

Five years would pass before I first heard or saw the words alkaline phosphatase.

What does this mean:

It means I could have been diagnosed with PBC — I could have started treatment –– in spring 2001 rather than winter 2007.

I like to think if I had left the hospital with copies of my labs, rather than returning there 5 years later to get them, I would have asked the right questions: What is this Alk Phos total? Why is it so abnormal?, and that I would have pestered someone until I got some answers.

By the way, the charges for the diagnostic tests no one followed up on: Nuclear Med Diagnostic: $891.25. Ultrasound: $189.25. Nuclear Med: $120.75, CT scan: $1,169.75 = $2371.00. Complete waste.

Advertisements

7 thoughts on “You Give Your Blood, You Pay the Bill, So Get the Results!

  1. Me again. Been through some stuff since I posted in March, 2013. A couple of months after I last posted I was diagnosed with PBC. After a cancer scare (my local hospital did an ultrasound and thought I had two tumors that turned out to be cysts after undergoing an MRI and CT scan), I was put on ursodiol. I’ve had blood tests and ultrasounds done twice a year since. My liver enzyme results got better and better over time. This past spring I got a fantastic surprise: my hepatologist says he couldn’t even tell I have liver disease by my blood test results. AND he did another Fibroscan to check my cirrhosis and discovered that I’ve gone from stage 4 to stage 2 (fibrosis).

    By the way, I’m in Canada and I don’t have to pay for all my tests plus I can get my lab results online through LifeLabs. I would hate to be seriously ill in the U.S. The additional stress of worrying about finances when you’re already sick must be pretty awful.

  2. Well, it seems I’ve found the answer to my question I asked in my previous comment about GGT. From a study:

    “[The development of serum alkaline phosphatase and gamma-glutamyl transpeptidase in early stages of primary biliary cirrhosis]

    We carried out a retrospective study for the development of biochemical abnormalities in nine patients with early stages of primary biliary cirrhosis (PBC). All patients had elevated serum alkaline phosphatase (ALP) and gamma-glutamyl transpeptidase (gamma-GTP) levels when the diagnosis of PBC was obtained. In all cases, serum gamma-GTP levels initially increased, followed by the elevation of ALP. In the routine laboratory tests gamma-GTP is more sensitive than ALP for the screening for early PBC.”

    http://www.ncbi.nlm.nih.gov/pubmed/7723166

    So I guess your GGT might also had been elevated when your ALP was elevated back at 2001.

  3. Not sure if you still have the records of your old tests, but when your ALP was as you say 445 back in 2001, were there other liver tests done with it, like AST, ALT, and GGT? Was GGT also high back then as it was when you wrote this post? I am myself concerned because since 2010 my ALP has fluctuated between 200-260, but my GGT has always been in the normal range. I’d be grateful if you post your liver results of 2001. Wishing you best of luck.

  4. Thank you, and thank you for writing: you’ll never know what good you may have done by telling your story. Best of luck.

  5. I’d find it very difficult not to feel bitter about this. My doctor ignored elevated liver enzyme test results for over a year until I found out I could look up my results online and I started pressing him about it. I had these tests because of two other conditions unrelated to liver problems. Finally I had other tests done and was sent to an internist. Just before my appointment I Googled an herbal I was taking for insomnia (jinbuhuan) and discovered that there was a ban against it in Canada (where I live) and that it causes liver and neurotoxic problems. Just last week I saw a liver specialist and was told that I have cirrhosis and he believes it was caused by the herbals. I still haven’t had a specific liver disease diagnosed but am being tested again in three months. Anyway, I feel angry that my family doctor completely ignored out-of-range tests for so long and never even asked me what I was taking. I assume I could’ve been diagnosed much sooner and would’ve stopped taking the herbals if I’d only known it was dangerous.

    I wish you all the best. It sounds like you’re going through a tough time now. You’re in my thoughts. ;~)

  6. Amen! I’ve learned my lesson as well. Thankfully only a year has gone by for me, but it was still a year without treatment. Sometimes I hate doctors.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s