Friday, July 25, 2008

Interesting New Test Results

Ok, they might just be interesting to me.

But my internist says she thinks the test results show my body is "declaring itself" that I definitely have an autoimmune disease. I'm waiting to hear what the rheumatologist thinks.

Anyway, my SED rate, which measures inflammation in a general-type way, is back up to 58. Normal is 20 and below. My most recent SED rate tests in June showed it had fallen to 31, the lowest it had been in a year, which I attribute to my taking lots of ibuprofin because I was having daily headaches. My rheumatologist didn't think my ibuprofin intake was enough to affect my SED rate so dramatically, but since I stopped the ibuprofin and it bounced right back up, I'm thinking I was right. (At its highest since the illness began, my SED rate was in the mid 80s.)

They also did a "C-reactive Protein (CRP)" test, which is another way to measure inflammation. My result was 4.5 and normal is 3 or less. I don't see in my records that they tested CRP previously, but I'm missing some blood test records so that might be one I missed. My internist thinks it was normal previously.

My ANA (anti-nuclear antibodies) test, which is a general, non-specific test for an autoimmune disease, is 29. Normal is 10 or below. Previously, I was considered a "low positive" at 18 last August.

My IgM levels of anti-Cardiolipin has risen to 75. It was 38 when first tested in July 2007 and was 49 in September 2007. It's one of the tests they do for Lupus, but is still non-specific. My IgG levels remain normal. My understanding is this test would be more specific if both my IgG and IgM levels were positive.

My internist was disappointed that after six weeks on a mega-dose (50,000 IU once a week) of Vitamin D has not yet significantly raised my levels. I was at 18.3 last week, up from 14.4 on May 19. The bottom range of normal is 30.

Also, my iron levels have fallen despite my increasing my spinach intake and taking iron supplements. I was 19.9 on May 19, and last week, I was at 18.4. They like ferritin levels to be at 50 or above. When I wrote about that in May, I had misunderstood my internist and thought she was saying I was anemic. I'm not anemic (I remain borderline, as I have been since childhood) but my iron stores are low, which could be a problem if I have major bleeding. But it isn't a serious concern now (except that they should be going up, not down, since I'm supplementing).


I go see a new neurologist this afternoon. My insurance company refused my doctor's request for authorization to prescribe Provigil for my intense fatigue. My insurance company said it only approves the drug for some sleep disorders (apnea, narcolepsy) and for severely debilitating fatigue induced by multiple sclerosis, and then only if two cheaper drugs fail to treat the fatigue.

I have a real gripe with that last part. There are many diseases that can cause severely debilitating fatigue, including lupus, rheumatoid arthritis, chronic fatigue syndrome, fibromyalgia. And those are just the ones that I think of off the top of my head. I know there are many more. Why only cover it for MS-induced fatigue??

I asked about trying one of the other two drugs the refusal letter mentioned, but it turns out they are not permitted with the anti-depressant (Cymbalta) that I take due to drug interactions. My internist is trying to put the pre-authorization request in again for the Provigil, this time pointing out the drug interactions for the other two. But in the meantime, she said the neurologist may be able to diagnose me with a sleep disorder that would allow the prescription.

Apparently, in addition to the well-known obstructive sleep apnea, there's a plain "sleep apnea" that my internist says can be diagnosed simply by intense daytime sleepiness and fatigue. And I definitely have that! So we'll see.

I'm also hoping the neurologist may have samples of the Provigil. I'm contemplating a formal appeal of the insurance company's denial, but before I go to the trouble, I'd like to know that the drug is helpful and the side effects not too troublesome.

I'm hoping I don't have to do a sleep study, but I am somewhat curious about how bad my sleep is. I feel like I don't get much deep sleep because I wake up so frequently due to pain from being in a position for too long. Most nights, it seems like I wake every couple hours and then have trouble falling back asleep. But I can't blame it all on my mystery illness since I've been a poor sleeper my entire life. (I just wish my daughter had gotten my husband's sleep gene instead of mine!! :)


Ken said...

To learn more about obstructive sleep apnea and a less invasive treatment option visit

Mckay K said...

Your problem's with medication and your insurance company seem so familiar.

It is too bad that we don't get the care our insurance companies promise when they are quoting and accepting our premiums.

Sherril said...

When I took Provigil, it was my psychiatrist who prescribed it. He gave me samples, then when my insurance company denied the prescription, he wrote them a letter and then they ok'd it. I was with an insurance company that did the state of Georgia. I forget the name, but it wasn't familiar and it might have been a company just for employees of the state.

Aviva said...

Sherril -- Wow, you got Provigil samples from your psychiatrist? Wow! My internist said she'd happily give them to me if she had them, but she didn't. And I just didn't click well enough with the neurologist to ask -- she wants to do the sleep study first anyway. (I'm waiting on pre-approval from the insurance company ... )

Sherril said...

Yup. I got LOTS of samples from my shrink. Because it took a long time for the insurance company to react to his letter. You know how they are.