Looks like I'll be using independent labs to do some tests that my EP won't order

Well, this has been nothing but frustrating!

I sent an email to my "new" EP that said this:
My C-reactive Protein test came back above the high norm for Kaiser. See attachment of Kaiser values for this test.
Will you please order a High Sensitivity C-Reactive Protein (hs-CRP) for me? I understand it is a biomarker for more specifics for a cardiovascular risk assessment. I'd like to rule out the possibility of atherosclerotic cardiovascular disease risk, or be proactive in management of such. I also understand my CRP test might be skewed due to my being overweight.
Thank you!
***
I received this email back from him:
I saw the elevated CRP blood test but it is difficult to know how to interpret it.

Without other symptoms of chest pain or tightness I would not recommend further heart investigations at this time. The CRP is actually elevated more than is typically seen in relation to heart disease, anything over 10mg/ml is generally related to some type of infection, injury, or inflammatory condition. Since you didn't describe any other problems it is hard to know the next best option. In some studies, 20% of people with elevated CRPs were not found to have any specific problem.

I would recommend you follow up with your primary care physician to make sure nothing else is going on.
The high sensitivity CRP is certainly not necessary since this (less sensitive) test is already positive.
***
This is very frustrating that I cannot get tests through Kaiser that may yield a better "picture" of either a diagnosis or to rule out something.

What the heck kind of infection, injury or inflammatory condition might I have that would get the results? (my related post is called "C-ReactiveProtein results -- trying not to flip out at the high number!")

I don't have any infections that I know of -- no sinus infection, no flu, no boo-boos, no cold or cough etc. I have not been injured in any way, and the only inflammation I might have would be very very minor from osteoarthritis that sometimes acts up in my ring finger--and it's currently not acting up! I do have calcification in my left knee, in the medial collateral ligament, but that is barely noticeable and certainly not swollen.

I understand that Kaiser wants the primary care physician to be the person who oversees everything, but sheesh! It's like I'm being passed back and forth -- I think I mentioned that when I asked my Primary for a RBC Magnesium test, he essentially said to ask the cardiologist. . and I only saw the cardiologist in order to get a referral to the EP.

Looks like I'll be getting my own lab work from one of those local lab places. Thanks for letting me VENT!!!!
Sue

Edited to add....ok, been reading since I posted this, I could be totally wrong in my guess, but the high value I got on the CRP test is likely linked to my weight, based on my reading published articles/abstracts in JAMA and NIH website...or maybe I'm grasping at straws. Thanks for reading...



Edited 1 time(s). Last edit at 03/20/2018 04:13AM by SueChef.

Notwithstanding the recommendations here for a high sensitivity test, you seemed to have a received a very astute response from you EP. The high sensitivity test is not what you need at all: if anything you need something which locates at a different point on the ROC curve and which has increased selectivity (at the cost of decreased sensitivity). I doubt it exists. I also like the fact that you received an email directly from the EP which addressed your concerns in some detail.



Edited 1 time(s). Last edit at 03/20/2018 05:37AM by safib.

I agree with safib that a more sensitive test doesn't make sense. If you're really concerned, ask your EP if he will repeat the CRP in a couple of weeks. Most likely the numbers will have come down by then because the inflammation that caused the high numbers has diminished. I think you underestimate how much a minor inflammatory source can affect CRP and you're overestimating the significance of the results you got. You're not having a major cardiac event. There would be other signs and symptoms if you were.

Thank you so much, both safib and Carey, for the gentle nudge in the right direction about all of this! Your input has been very helpful and is much appreciated!
Sue

Hi Sue, our current personal doctor says he doesn't put much stock in the hs-crp test. He's not a cardiologist or an EP, he's our D.O (we pay out of pocket for his mini concierge medicine practice, worth it's weight in gold). His reasoning is that he sees patients all the time, ones that should have sky high CRP readings, but instead they are very low. My hs-CRP, for example, is low (low risk), despite having had a major heart attack, later nine years of progressively worsening a-fib, and eventually an extensive full Dr. Natale index ablation. I don't even bother to run my CRP anymore, although I did run it for years previously actually. It was always consistently....low. lol

But you have mentioned Kaisar in some of your posts. I would be remiss if I didn't say my wife and I over the years both eventually came to the conclusion that our medical treatment with Kaisar was not conducive to us living a long life. I'm holding back with my words here, I'll tell you more if you would like. They may be a good fit for some, and some patients are fans, but many fall through the "cracks" as they don't line up with Kaisar's statistical medicine models. Your letter from the EP contains a taste of Kaisar's gate keeping "Without other symptoms of chest pain or tightness I would not recommend further heart investigations at this time". Translation? There will be no further tests. Of course this ignores that almost half the women that are having full on heart attacks have no chest pain at all.

Hi, Neil and thank you so much for your reply about the hs-CRP test. Food for thought indeed.

As a retiree, there were two options available for me in terms of insurance coverage (Kaiser and Sharp, I think), and out of those two options, each one had a choice of HMO or PPO. The Kaiser I selected is a one-time only choice, and if I ever switch coverage, I can never go back to that one. It seems to be the Cadillac of Kaiser coverage offered by my district, which would be only too happy if I cancelled and went with one of the other coverages which would cost them less money.

I am not feeling warm and fuzzy about Kaiser at this point. I am a pretty good advocate for myself, and intend to do everything possible in terms of an appeal process (and continuing to jump through hoops during an appeal process as I would anticipate being denied and denied and denied, but that wouldn't dissuade me & I know they have an oversight committee and really mostly would HATE all the paperwork I can generate during the process), should I have the eventuality of needing a procedure and wanting Dr. Natale to do it.

I kid you not, and this is me projecting, by the time I'm finished with the "panel" that hears appeals for Kaiser and my demanding an EP outside of their web, those people on that panel will be *educated* and will opt to go to Dr. Natale too!

Yes, if you wouldn't mind, the more info I have about Kaiser coverage and your experiences, the better, so please don't hold back words in a reply or a PM.

The one thing I do like about Kaiser is that you can see someone at any time, including after hours and on weekends, through either same day appointments or urgent care. The ER is always available for any insurance, but the accessibility was what steered me to Kaiser years ago. That was nothing but frustrating to me when I had different insurance coverage--the lack of getting medical care after office hours & on weekends and holidays was often frustrating and problematic.

Quote

Your letter from the EP contains a taste of Kaisar's gate keeping "Without other symptoms of chest pain or tightness I would not recommend further heart investigations at this time". Translation? There will be no further tests. Of course this ignores that almost half the women that are having full on heart attacks have no chest pain at all.

^^^^^^ You're right about the gate keeping. I can well understand how savvy people who want to burst through those gates and get those diagnostic tests to "rule out" (or confirm!) this or that, might comment on possible symptoms in order to get a full and more accurate work up, i.e. a twinge in the chest area, a slight neck ache, shortness of breath, etc.

Sue



Edited 1 time(s). Last edit at 03/22/2018 05:21PM by SueChef.

If there's a good word to be said for Kaiser, I haven't heard it yet.

Hi Sue,

Please don't in any way feel that the following is critical of you personally, or your choice of Kaiser. The following is offered in the spirit that we are all in a pickle with our a-fib, and seeking answers. In that sense, we are all friends here. With that out of the way, I'll get right to it. I had the great misfortune to have Kaiser for a number of years. In the beginning it was pretty OK, they charted my cholesterol and did physicals, they even gave me a tetanus shot, a DRE, and a colonoscopy....all good things. It turns out that's what Kaiser is really good at, as it saves them money to catch things early.

All went pretty well, I stayed healthy, and since I was much younger, I really didn't use Kaiser for too many things. I didn't have a single prescription of anything for many, many years. Quite a few years later though things started to come off the rails for me with my health, I started to feel really horrible over a number of months, it happened slowly. Eventually though, no energy, cold, winded really easily. Where I used to go for two or three miles walks three or even four times a week, now I started having to head home after a couple of blocks. And I had horrible headaches, even though I have no history of headaches or migraine in my family or myself. Kaiser blew me totally off, I went there over a dozen times, and got no answers, I went for followups, again nothing. I even went a couple of times to their ER, and got no answers. Of course, they saved themselves legally, and saved themselves a lot of their money, as they didn't run any tests on me. At this point, my symptoms were vague enough they were hard to pin down. If you don't run any tests, that is. So, they didn't. I wouldn't have known what tests to ask them to run at that point in my life, at the time I knew nothing about medicine. They were the experts, right?

By this time many months have gone by, and I could hardly function, barely drag myself to work. As an act of desperation I switched insurances at the next opportunity. And then it happened, even before I could book my appt with our new doctor. While at work I had a heart attack. I was lifting a few boxes, and suddenly felt very strange. My heart was racing and jumping, I felt jittery and sweated just a bit. I had no idea what was happening, I had nothing to compare these feeling to. It felt like I had just run a mile as hard as I possibly could. But I was just standing there. I had no chest pains, zero. I did have a horrible pain right below my ribs, pain in my neck, and numbness patch on my forehead though. In hindsight I should have called 911 or had someone drive me, but I drove myself quite a distance to the Urgent Care of my new medical. When I walked in there were probably 60 people sitting in the waiting room, you know the typical, hacking with colds, kids crying about this or that. But I knew somehow something was horribly wrong with me, so I went to the desk and whispered "I'm having chest pains" (again, I wasn't) and they motioned to a door for me to go towards. By the time I walked to the door it had opened. They quickly did an EKG on me, I saw their doctor, he said "you are in atrial fibrillation and could be having a heart attack, we need to get you to a hospital, you need more treatment than we can do here". They found at the hospital ER I had a completely blocked major coronary artery (RCA), and another that was 60% closed (LAD). With great difficulty (two trips into the cath lab over two days, two cardiologists and many, many hours) they got them both stented. Turns out it had happened slowly due to my extreme hypothyroidism (97 degree body temperature, FT3 wildly below range, Kaiser never tested or cared). They told me my blocked artery happened over a few years as it was totally calcified crusted shut, and that the only thing keeping me alive was the growth of collateral arteries, the smaller arteries that somehow grow a bit to keep the heart going. They explained to me that the growth of these collateral arteries are what's known as "natures bypass", and that back in the "olden days", that's all people had to stay alive. Indeed, Kaiser won huge with me leaving, they saved a ton of money on me, as my new insurance was paying out huge amounts right then.

But at the moment of heart attack, did you notice I said atrial fibrillation right above there? That's where I got the gift of a-fib. The gift that keeps on giving. The gift of atrial fibrillation progression, rather typical actually. My heart attack damaged something in my heart's electrical system (thanks Kaiser), and at the heart attack I was in a-fib for several hours there in 2004. In 2007, even though my blockages were 100% clear and heart was other wise fine, it came back for two weeks. In 2010 I had it for three months, and they cardioverted me. See a trend here, it's getting worse and worse. Shortly after that, despite my arteries being clear, I was in a-fib 24/7 and interviewing EP's, and as you know, eventually seeking out Dr. Natale. Kaiser could have headed this whole thing off by doing an inexpensive nuclear treadmill test on me. Instead, I spent the next decade of my life chasing health issues.

My wife's experiences are just about as bad with Kaiser. Like me, for years with Kaiser, feeling healthy and good, never really used their system much. Then at the age of 45 or so over a few months more and more tired and low energy. Got nowhere with Kaiser. Horrible mind bending headaches, hot flashes, bowel upset, constant UTI's. Kaiser's answer "you must be depressed, here's Prozac and a low dose anti-biotic we will keep you on permanently". And told here to take extra strength Tylenol three times a day, forever. No labs, ever, except for urine for the UTI. Situation got worse and worse, until all she could do was sit on the couch and cry in a darkened room. Eventually had to quit her job of 16 years, before being fully vested. Fast forward a bit, by chance, a friend of a friend mentioned "I know a doctor who deals with medical mysteries, he can fix your wife, but he doesn't take insurance and charges $500 for a first visit". We could hardly make an appt fast enough.

Additionally had to run over $300 of labs to take with us to her appt. Long 2 hour plus appt. with this new D.O. functional medicine and his specialized PharmD. They poured over the labs, pulled and prodded her endlessly. I could write a book with all that we talked about for those two hours. Findings? At the age of 45, had the hormones of a 70 year old woman, just about flat lined hormones. That explains the zero energy, can't sleep, hot flashes. Turns out she has three auto immune diseases, Hashimoto's (attacks and destroys one's own thyroid), Celiac (headaches), and auto immune Asthma (we were told mild allergies at Kaiser). Told to come off Tylenol as it's eroding her stomach and bowel, drop anti biotic and substitute a natural UTI healer called D-Mannose, added Nature Thyroid script, added bio identical hormones from compounding pharmacy ($60, lasts almost three months). Taper and drop Prozac and add Longvida instead (incredible stuff). Fast forward, it took quite a few months to fully get better, now back at a new job she loves, health and color like when I met her. Not one single UTI since. Not one!

So now, we both see this D. O. doctor with followups (followups are cheaper). He treats my hypothyroidism as well, low T, and I had low estrogen as well (another thing Kaiser never tested for, guys need some estrogen too), T was 240 total, free T could not be measured <5), and all of my arteries are staying open now for 14 years. For many years with Kaiser I looked pale and had low hemoglobin, once I got on T it immediately resolved as I was told "testosterone builds red blood". I'm now picky as hell about my doctors.

We both run labs every six months, that we pay for. We both take magnesium, vitamin D, astaxanthin, fish oil, K2, B complex, I take 2,000 pure niacin daily, and both take Longvida (a special preparation of Curcumin developed by UCLA). That last one is probably the most amazing thing I have experienced or witnessed the effects.

So, pop quiz. Do you think if my wife and I had continued on with Kaiser for the last decade we would be alive? If we somehow were to live, what would our quality of life be??

In closing, if a person doesn't really get sick, Kaiser seems fine. They even give you cool graphs of your cholesterol and stuff. They weigh you annually as well, and take your BP. If you get sick, good chance you will die. If you get cancer, make your arrangements. I'm totally serious here, the way Kaiser slow walks things the cancer will spread until it's too late. (see the first link for a cancer story with Kaiser)

I wouldn't send my dog to Kaiser. I wouldn't even send my neighbors dog, who messes on my lawn to Kaiser.

[robynlibitsky.kaiserpapers.org]

[www.kaiserthrive.org]

[kaiserkills.com]

[horror.kaiserpapers.org]

[kaiserbadnews.com]



Edited 1 time(s). Last edit at 03/23/2018 01:51PM by onewaypockets.

Hi, Neil,

Thanks so much for taking the time to write out such a pertinent and personal reply, and I really appreciate the links as well. It's an eye-opener, and very scary stuff !

My health care for this year is locked in to Kaiser. Every year during open enrollment, we get two choices for health care coverage, as I mentioned earlier. FWIW, one option is always Kaiser (and has been for many many decades).

Under the Kaiser umbrella, there are two choices.

The other health insurance coverage often changes annually. For 2018, my choices were Kaiser or UnitedHealthcare HMO Plan d.

Further research from today indicated that there were 3 choices within and under the UHC plan: Network 1 which includes Sharp Rees-Stealy; Network 2 which includes Mercy Physicians, GreaterTri-Cities, Mid-County, multi-cultural, Scripps Physicians Medical; and UHC Alliance which includes Mercy Physicians, Primary Care associates, Rady Children's Healthy network, Scripps Clinic, Scripps Coastal Medican Center, Scripps Physicians Medican and UCSD Medical. I found a statement that if my district offers the Performance HMO, I must choose one Network for me and my family--I have no idea if my district even offered the Performance HMO.

With the United Healthcare HMO Plan d, I have NO idea if I am eligible for choose any of those 3 UHC options or if I may be limited by where I live in the city or county, nor do I know anything about co-pays, urgent care, or other things of concern. Further research is required. AND then again, next year, UHC may not even be one of the two coverages offered.

Thank you again for your very helpful input!
Sue

Hi Sue,

Sorry to lay my big post on you. I started writing a bit, and it just poured out!

It would be best to ask Shannon about what options are best, he knows quite a lot. Or wait until the new choices at the next open enrollment and then PM Shannon and get the best options. One thing came to mind, with some of the United Health choices, they may have some decent choices, and many plans, outside of Kaiser anyway, have a "out of network" option. That might work for you, and still get Dr. Natale somewhat covered. Just a thought, I don't know it for a fact.

Even if you don't need an ablation for a good long time, other medical things can happen. So you know how I would vote, any plan is better than Kaiser. But enough of my soapbox! lol.

Neil, no need to be sorry about anything and feel free to stand on that soapbox and preach!!!
I very much appreciate your input and thoughts and sharing your & your wife's personal experiences, so please know your writings were well received!!

I will definitely have to wait until the next open enrollment time as I am locked in for this year, to see the choices the district offers and any changes therein, and you're right, there *may* be some decent options!

Sue