Why won't my doctor tell me my lymphocyte count??

draperygoddess · Post by **draperygoddess** » Thu Oct 27, 2011 7:43 am

I have been going back and forth between the pathologist and my GI since Monday about my initial biopsy. The pathologist diagnosed non-specific colitis, and the second opinion from Vanderbilt indicated "no significant histopathological change." I wanted to get the lymphocyte/enterocyte ratio so I would at least know what the diagnosis was based on. The pathologist's assistant told me the pathologist would not release this information to me, that I would have to talk to my doctor. The doctor's office told me they would not give me the information without an office visit. I refused, since I have already had one follow-up visit and nothing has changed since then. This morning I got a call from the GI, who is still very reluctant to give me this information. He says the location of the lymphocytes is what's important, that they have to be in the surface epithelials, not in the lamnia propria. Is this right? He finally agreed to call the pathologist, but told me several times that he did not think this would be helpful to me. He told me he thought I had diarrhea-predominant IBS (of course he did!) and that if later biopies showed evidence of LC it would be diagnosed at that time.

Other than covering his own butt, why on earth would he not give me this information?

Polly · Post by **Polly** » Thu Oct 27, 2011 8:00 am

Hi Cynthia,

My understanding is that the inflammatory cells are found in BOTH the surface epithelium and the lamina propria. Wasn't this the the case with your specimen or am I missing something? Anyway, I admire your dogged determination. You may never get the answer you want, unfortunately. Maybe no one who reviewed your slide ever noted an actual lymphocyte count in the record, or maybe your MC has been caught very early. It just shouldn't be this difficult. Sigh.

If I were you, I would assume it's MC (at least we know there is some evidence of inflammation where it is usually found in MC). You know, "if it looks like a duck, walks like a duck, etc." In this case you will have to be your own diagnostician despite your docs. The proof of the pudding will be your response to eliminating sensitive foods. Do you have a good PCP who will work with you to prescribe appropriate meds, etc.? Sometimes it is necessary to leave the GI doc out of the picture for certain things.

Hugs,

Polly

karenswans · Post by **karenswans** » Thu Oct 27, 2011 8:47 am

Don't you have the right to copies of the pathologist's report under the freedom of information act? (Or did I just make that up?) I just sent away for mine. I had to fill out a form and pay 11 bucks for the copies, but they're giving me the report.

sarkin · Post by **sarkin** » Thu Oct 27, 2011 9:01 am

It's possible, as Polly says, that the answer you seek isn't in the report. But you must be entitled to complete copies of the report, as a matter of courtesy if not of law. If your doctor is right that this won't be helpful to you, he's got nothing to lose by giving you what you ask. If he's wrong, he still has nothing to lose*. Can he not understand that you are curious about what's going on inside your body; that you are responsible for the bill for this procedure, and that paying for it - not to mention undergoing it - gives you a sense of ownership about the result? (Unless he's willing to "own" your symptoms...)

Why would he not want to do whatever possible to satisfy your curiosity, or to give you peace of mind? (You could actually ask him this, directly.)

*Of course he could lose you as a patient, but - I guess if he won't share *your* test results with you, that's a chance he's willing to take. He doesn't even sound as though he's covering his butt - that's giving him too much credit (as if he understands something he doesn't want you to know - whereas, actually, I don't think he has that much of a clue).

I do agree with Polly - you can reasonably assume you have something in the MC family, and proceed as you already are toward remission, with the help of your GP if necessary.

Here's hoping he figures out that the best way to get you to stop asking questions would be - to give you some answers.

Sara

Zizzle · Post by **Zizzle** » Thu Oct 27, 2011 9:18 am

There was no lymphocyte count in my report. It was very basic. I'm guessing the pathologist looked at the slide, saw a bunch of lymphocytes, and made the determination without counting each one. I believe it said they were in both places, as Polly mentioned.

Non-specific colitis would be enough for me to move on as though I have MC. No one, including your GP, is likely to ask you for proof of the dx, so you may not need to try so hard to obtain it.

MBombardier · Post by **MBombardier** » Thu Oct 27, 2011 10:24 am

Wow... I got a copy of the complete pathology report--where the biopsies were taken, how many, what the pathologist did with them, what she saw, her conclusions... I also got a set of photos taken during the colonoscopy. Why do practices around the country differ so much?

draperygoddess · Post by **draperygoddess** » Thu Oct 27, 2011 11:10 am

I did request--and get--a copy of my pathology report. However, it does not mention the lymphocyte count (which, I understand, is pretty common). The original report noted scattered inflammatory cells in the epithelium and inflammation and edema in the lamina propria. All I want them to tell me is how he arrived at his diagnosis, since MC is (supposedly) diagnosed by the ratio of lymphocytes to enterocytes. My understanding of HIPPA is that I am entitled to a copy of my medical information--wouldn't that include that information?

I found several articles online that state the criteria for diagnosing MC, and all of them mention increased infiltration of the epithelium as one, but not the only criterion. It sounds to me like the pathologist is completely ignoring the chronic inflammation of the lamina propria because the surface IELs don't fit the diagnosis. And the GI is still telling me it's IBS, despite a diagnosis of "non-specific colitis" and the inflammation/edema. His latest comment: "If you can find a pathologist who believes this is relevant, we will be happy to send your biopsies to them for evaluation." Now, how am I supposed to find a pathologist??

MBombardier · Post by **MBombardier** » Thu Oct 27, 2011 1:02 pm

At this point, Cynthia, I would probably be loading my shotgun... Oh, it's already loaded.

Just kidding, of course. I hope you find some good answers shortly. I am sorry you are having to go through this.

Post by **tex** » Thu Oct 27, 2011 1:42 pm

Marliss -

FWIW, I believe that Polly has hit the nail on the head, when she pointed out that an actual lymphocyte count was probably never made. If there are a number of slides to evaluate, counting lymphocytes can become a time-consuming pastime that a busy pathologist can probably put to better use elsewhere. I would assume that for an experienced pathologist, making generalized judgments such as that are a routine practice.

And, of course, Polly is quite correct that the lymphocyte infiltration increases in both the surface mucosa, and in the lamina propria, for most patients with MC.

You are certainly entitled to a copy of your existing pathology report, but that doesn't imply that you can demand the disclosure of information that is not in that report, and what you are requesting is very unlikely to be in that report, IMO.

"non-specific colitis" is simply saying that, "I can see the markers of colitis, but I don't have the foggiest idea what they mean", (more or less).

Tex

Gayle · Post by **Gayle** » Thu Oct 27, 2011 2:37 pm

Cynthia,

As I see you are located in Tennessee, if I were you, having such a challenging time with this issue, I would request that ALL biopsy slides taken at the time of that colonoscopy -- be sent right up to the Cleveland Clinic for 2nd opinion by the Pathology department there. GI is a big thing at the CC and, Pathologists there more adept at understanding this MC issue, and its variables, than many other Pathologists in practices who do not see this condition very frequently.

Another study that I can no longer lay my hands on here, but I recall reading, was a study looking at the difference between the accuracy of Pathologists in institutions where they see a lot of MC, and Pathologists whose practice does not include so many of us odd balls with MC. There was a rather significant difference in accuracy between the two groups.

I would make a formal request in writing to the GI doc, and copy to the GI department at the CC. Whatever the verdict here is -- you should be informed!

It is common in many conditions, to send slides around to verify, or question the accuracy of, diagnosis. :cool:

You don't have to think this would be a really strange thing to do.

That's what I would do.
Good luck,
Gayle

Post by **tex** » Thu Oct 27, 2011 5:31 pm

That sounds like good advice, if you really want to get to the bottom of this. You might also want to consider the Mayo, since they are currently ranked number one in gastroenterology. Here are some more alternatives:

http://health.usnews.com/best-hospitals ... -disorders

Tex

draperygoddess · Post by **draperygoddess** » Thu Oct 27, 2011 10:19 pm

Thanks, everyone, for all the great advice (and sympathetic ears!). I think I will ask the GI to send my samples to the Cleveland Clinic, since it's fairly close and he did offer (though I'm pretty sure he didn't expect me to take him up on it!). The more I have thought about it, the more I think Polly may be right--the reason the pathologist doesn't want to release the lymphocyte count is because he never did one. I have been feeling much better lately, seem to be in remission with a combo of diet and getting off the Zoloft, but it makes a difference to me whether there is damage to my colon (whether from MC or something else), or whether this really is only a motility issue (which I find a little hard to believe, considering the "non-specific colitis" diagnosis).

Probably the most disheartening thing about the whole situation was that, after I got off the phone with the GI this morning and was so angry I was shaking, my husband asked me, "Are you sure you really have MC?" NO, of COURSE I'm not sure--if I knew for sure what I had, why would I be arguing with my doctor at 8:00 in the morning? It is just such an encouragement to me to have the PP backing me up. Many thanks to all of you.