Blood tests every 2 weeks

[deeindiana]

I can confess here (because I put on a brave face everywhere else) that I'm kinda freaking out. At my last blood test my Sed Rate and CRP were too high so my rheumatologist ordered them retested every two weeks for a couple months.

I've had three tests so far (that's a month and a half) and the numbers are so confusing.

The CRP should not be over 3. Mine started at 17.4 but is coming down: 6.8 and 6.4. But the numbers are still too high.

The Sed Rate for my age should be under 30. Mine are all over the place: 17, 14 and the most recent 28.

When asked what she is looking for, she simply says "inflammation". Okay... You've found it but what does that mean? A quick Google is terrifying, saying those numbers could mean lupus, the flu, cancer, or an impending heart attack! (We should never Google, right?)

If anyone has some insight I'd appreciate hearing. If not, at least it feels good to be able to vent safely here. Man...I get tired of being afraid.

Thanks for listening.

[meirish]

Hi girl, so sorry that you are having all this confusion. I know very little about those tests except that they are inflammation indicators.....but we never know what they can mean all the time.

I have to admit that my first thought was that maybe it was time to stop checking on what they mean. The doctors haven't figured it out yet, I assume, and that is probably because they are not getting any signs from your other blood tests or your body's symptoms that are a significant influence.

I am not trying to be a smart pants as I understand completely what you are experiencing. I have had some significant test results over the years that have been confusing and worrisome. Have to admit that I finally after all these years don't get as "het up" as I used to and I guess I have just run out of steam. I had 2 small lesions show up on my MRI last January when I had my big hemorrhage. I got a call a couple of weeks ago that I needed to have those lesions scanned again. I know that this could be life changing (or maybe life threatening) but I have had so many other health issues going on that I have not panicked. I think I have been ill too many years....that is my only idea of why I am so calm.....so far.   

I have sort of adopted the idea that I will not panic or worry until they tell me to. Probably that is something that comes from being 80 years old. lol Just know that trying to figure out what our body is doing will cause us much stress which could in turn increase our autoimmune issues in some way.

Before this is over you could have lupus or some other issue or the blood work could just revert to the old normal for you. I hope that you can exist with this stress and maintain your calm until this is over. It may be that you will need this 2 week testing for months so the need for maintaining less stress is so important for your body. Know also that having this blood work is really something that is being done and dr. may change it to every month or so, whatever.

I would ask her what she is looking for and what she intends to do about it if the blood work just continues without significant symptoms. Also, know that your blood could have been doing this off and on for years without ever being caught on blood work. Few, if any, symptoms are good. Good luck and keep us updated every so often on how things are with you.  Take care. meirish

Can't figure out why this doesn't carry over. meirish

[Linda196]

This is actually a lot more complicated than you'd think.

Both tests indicate inflammation but the CRP is a direct measurement, the ESR (sed rate) is a calculated measurement dependent on other results which mayor may not be normal.

CRP concentration peaks rapidly, approximately 48 hours after the inflammatory stimulus. When the stimulus for production stops, CRP decreases quickly. ESR is an indirect measure of inflammation. ESR levels increase at a slow rate in response to inflammation and can take weeks to return to normal levels, so testing for ESR every two weeks might be the reason your's is "all over the place". Think of it as a sprained ankle: first response is a spike in CRP, but in the next 48 hpurs, as the swelling increases, the active stimuli is gone so the CRP starts to resolve but the ESR starts climbing and will stay at an elevated level for a couple of weeks. During that few weeks, if you happen to step wrong or twist the joint, it inflames again, not from a new injury but from irritation, so the ESR goes up again a bit, delaying the eventual normal reading, but the CRP doesn't reflect a new injury so it doesn't spike.

As a result of the different ways they work, the CRP  is a more sensitive and accurate reflection of the acute phase of inflammation than is the ESR.  CRP is more useful in diagnosis as well as in monitoring responses to therapy in acute inflammatory conditions, such as acute infections, inflammation from injury, or a flare of chronic inflammation. My lab used <5 mg/L as a norm for CPR, and mine was over 16 for many years while the ESR normalized in 6 months and is rarely elevated at all any more.

A low CRP level does not always mean that there is no inflammation present. Levels of CRP may not be increased in people with rheumatoid arthritis and lupus, and there is no clear reason for this.

A much more specific test for inflammation is Serum Protein Electrophoresis, which breaks down inflammatory response to the type of white blood cells involved, and can reflect the increases that reflect or rule out malignancy. And a high sensitivity CRP (hsCRP) can sometimes rule out cardiac threat as opposed to rheumatological, infective or injury inflammation.

I've probably just confused the issue more, and if so, I'm sorry, but it's a confusing issue, for sure, and that's why the Rheumies make the big bucks! LOL

[meirish]

Linda, Thanks for that explaination. More than I ever had in nurses training or found in all the years of research I have done.

Very interesting also as I have these 5 autoimmune diseases but never run an elevated CRP or sed rate. My Sed rate was always below 5 and one time it got up to 18 and my immunologist got so excited. lol

I think blood work can really drive us crazy much of the time. It can be unusually low or unusually elevated and often this is just related to dehydration of some other thing going on in our body. It sure keeps the labs busy and the insurance companies busy pay our bills. I get my HGB checked so darned much and for years...it almost becomes funny except I end up getting iron infusions or blood every so often. Plus, they never fix us, just plus the hole or do something to maintain us for a while. And life goes on. Hope you are doing well. Take care. meirish

[meirish]

dee, just wondering how you are coming and what the doctor is saying at this point and time. I am thinking you are staying the same or maybe improving as we haven't heard from you for a while. WE can always hope for the best. Take care meirish

[deeindiana]

Thank you so much Meirish and Linda. Sorry for the absence. Hubby not doing well for a bit. You both have great explanations - plus kind reminders to relax and breath! The two week tests continue and I (patiently?) wait. She scheduled me with a neurologist in April to follow up with the temporal artery suspicion. Plus through all of this they discovered I'm a diabetic. Oh boy! Let's just add something else, shall we! They tried me on a couple meds which made me sick. So now I'm going to try Jardiance. Fingers are crossed! So... Like so many of us here, I just plug along and hope for the best. Thank you again for your help. You two are awesome!

[meirish]

Glad to hear that you are still able to keep up the good fight. I always say that if we live long enough we all will get diabetes. I got it in 2009...Don't even know how old I was at the time and am too lazy to figure it out!!!  I have been on metformin until this past July when doc took me off because of my kidney disease. The kidney doc said my kidney issues are not from diabetes but from my high blood pressure. Doesn't make much difference cause I still have it and am not on any med now. I am not following a diet very well and heaven knows what my A1C will be.

Let us know how you do on the Jardiance please. I do not know anyone who is on that drug and always wonder what they will put me on again if my blood sugars are too bad. Sorry to hear that your husband was having issues and hope he is doing better. Glad to hear from you. Take care. meirish