View Full Version : Need opinions
04-18-2012, 05:27 PM
So I just want some opinions. My rheums office called today and said "you're blood work looks fine" AGAIN. While it looks "normal" it looks exactly like it did last year when I was flaring. She also didn't run some of the tests that always are high when there is disease activity. I'm going to add the document I just obsessively spent an hour putting together. What does your rheum look at for you that makes them say how you're disease activity is? I feel like my blood work has to be lying, too many things are going on.
This is the best I could do. I had to make it a picture.
PS: The "SEGS" and "Lymph" tests, while in the normal range, are abnormal from my norm when I am not flaring. The segs is usually high 80s low 90s. The lymphs is usually really low like 6-8 when I'm not flaring, in the 20s when I am.
04-18-2012, 06:34 PM
My ruhemy wants to see me every 3 months regardless of how I feel.
He runs the standard blood work and most of the time most are in the normal range.
The 1 that causes the most concern is the ds-dna level-which can be elevated when I feel okay and other times I feel like crap and it is in the normal range.
According to the dr that is not unusual as when it is elevated the disiease is active and it may subside while I am feeling the effects of the recent activity.
Kind of like a delayed reaction.
As well my sed rate gets elevated,but I normally know that without the test-because I feel real achey. So far none of my blood work shows any organ involvement!
I'm sorry you are having these difficulties. My dr. insist I come in regularly because lupus can be so misleading and elusive.He expects that at times the blood work and how I feel don't always match up-thats just part of lupus's charm!
Take Care Niall
04-18-2012, 06:41 PM
My rheum runs the same tests lately over and over every 3 weeks and doesn't look at the ones that always are signs of flares for me. Me sed rate and other signs of inflammation are always, and have always been "normal" my numbers that show up really out of wack are muscle related. But she hasn't checked them in awhile. I thought she definately would this time because I told them "my muscles feel weak". Geez how could I be any more clear! I am having such a bad day.
04-18-2012, 07:35 PM
my usual blood count consists of:
my usual first sign of inflamation is my c3
but every one can be different.
04-18-2012, 07:53 PM
Mine is my CPK and LDH, also the C3 and C4 but not always. She hasn't checked the CPK or LDH lately though. I'm going to call her out on it on Tuesday.
I'm going through this same issue, my doctor only looks at the labs. For the past year ive been going through this with my rhuemy.
04-21-2012, 06:03 PM
I had a pft and echo done on Friday and have an appointment on Tuesday.
04-21-2012, 07:25 PM
This is the same thing that infuriates me about my current rheumy. Every time that she gives me a lab request, she only asks for the routine stuff - CBC, comp metabolic panel and a thyroid and B12 check. None of the things that Steve mentioned are even on my reports, and it worried me that she was never requesting a liver panel, even when I was on MTX. She also only requests lab work every other time I see her, so I'm only getting it done about once a year.
My doc in Texas was OCD about lab work, and she had them check for all kinds of things, very often.
I'm thinking that quite a few rheumys are just lazy. They think that if they just document the bare minimum and tell us that the blood work looks fine, they are covered. Rather than being pro-active, they just sit back and wait for our symptoms to get bad enough to be obvious.
When I was mid-wifing, we saw OBs who would do this, too. They have the attitude that they don't need to educate the mom-to-be, but will deal with complications medically when they appear. Midwives tend to educate and counsel the Moms on proper nutrition, exercise, childbirth classes, etc., so that the complications can be prevented.
On Tuesday,you should "innocently" ask her "What were my CPK and LDH numbers?"
Good luck, and try to get an appointment with that other rheumy that you were looking at.
04-21-2012, 07:29 PM
I plan on printing out my paper where I have all of the tests listed and results listed to ask her what exactly it is that she looks for in a flare. Even the ones that are normal aren't exactly normal for me. They normally run high above the norm and seem to drop down into the norm range when I'm sick.
04-21-2012, 07:38 PM
You go, girl!
04-22-2012, 08:08 PM
I was trying to find out if low SEGS and high lymphs are a sign of a lupus flare and online I found a few things that say this is true. Does anyone know if thats right?