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Advocating for tests

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Ulcerative Colitis
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Posted 10/25/2021 6:24 AM (GMT 0)
Do you find the need to advocate for different tests and labs. If so, what ones and why! (Ie blood, stool, specifics)?
Posted 10/25/2021 2:08 PM (GMT 0)
It’s my experience that drs will only prescribe tests they know insurance will pay for. I’ve never had a calprocten (sp?) test and very rarely the CRP test (even though I know it’s not very reliable for specific inflammation). I don’t get pancreas tests (lipase and amylase) even though I had extremely high numbers when I was flaring. Mainly I get the complete CBC panels and liver/kidney panels since I’m in remission.

I once had to pay $250 for a blood test looking at genetic markers because insurance refused to pay for it — even though the result showed that taking methotrexate could be very bad for me — and I’d taken if before that when I first started entyvio because I couldn’t take the 6mp class of drugs. Insurance frustrates the hell out of me
Posted 10/25/2021 2:38 PM (GMT 0)
If there is a certain test you feel you need or that your doctor is neglecting to order, bring it up to him or her. I often do this for things like my yearly DEXA scan to check my bone density or if I want my Vit. D levels checked again, things like that. But I've been at this for nearly 15 years so I kind of know what tests I need and when a lot of the time. If you have a good doctor though, you shouldn't need to be asking for certain tests very often (or at all). That's their job.
Posted 10/25/2021 5:42 PM (GMT 0)
Thanks Sara smile
While I was diagnosed a decade ago, this is really my first time dealing with significant symptoms. I guess I've been shamefully naive to a UC diagnosis. I also never landed a GI doctor that I've built a relationship with. It's been one doctor after another, leaving practices, and getting bounced around.

I'm hopeful that moving to the Mass General Crohns and Colitis dept. helps. There are few doctors over there who's background in research and teaching seem promising.
Posted 10/25/2021 6:39 PM (GMT 0)
I hope you end up finding a great doctor there! If you don't on the first try, keep looking. No shame in advocating for yourself.
Posted 10/26/2021 3:18 AM (GMT 0)
Using a research hospital usually is better-or it has been for me. They know what tests are paid for and the time frame. (Usually)

I have to remind my GI to check my vitamin D levels. CRP tests are not done very often. The CBC, CRP and CMP are done with every infusion. Heads up... insurance does not like paying for those 3 with every infusion and we have had to dispute a few times. (+ Insurance wants it done every 12 weeks)

Usually when I go to a new doctor they order tests...

I hope you find a doctor you like.

Clo
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