I need medical/life advice, experienced or otherwise

In My Humble Opinion
1

Recent blood tests ordered by my referring orthopedist (the one who recommended a hip replacement and referred me to the surgeon) have revealed that my “rheumatoid factor” (RF) is quite high (30.5 where normal is apparently below 14). She has referred me to a rheumatologist.

Having done a little light reading, I find that this can be associated with autoimmune diseases such as rheumatoid arthritis, but also other things and sometimes with nothing. One source said that 5-10% of healthy elderly patients (I am 77) have a high RF.

So this seems like an invitation for a long and quite likely fruitless search for some disease for which I have no discernible symptoms at present. I just had a hip replaced, for what they told me was osteoarthritis, and recovery is going well. I really don’t want to start down a rabbit hole of more and more doctor’s visits and blood tests, when (as I mentioned) I have no discernible symptoms driving it, just this background reading. It reminds me of when my PSA went up for no apparent reason and (2 MRIs later) with no apparent effect on my health – much ado about nothing.

I don’t want to let the doctors drive this, frankly. Being a Medicare patient means they are assured of getting paid for a lot of visits, as long as there is any test they can point to as a cause for concern. I have a followup appt. in 7 weeks with the orthopedist (I don’t know why, I should have asked). I can just tell her I don’t want to go to a rheumatologist without any symptoms and with such a wide range of things to look for. Or I can go to the rheumatologist, present my point of view, and see what they say.

This is as far as I have gotten. I haven’t contacted the rheumatologist yet, but if I am going to do so I suppose I should get it over with. I’m not good with being confrontational with doctors, so if you think I’m on the right track, maybe a few handy hints to keep in mind while I am dealing with them. Or if you think I’m on the wrong track, tell me why. Thanks in advance for your thoughts.

2

I gather the RF factor was discovered by a blood test? Tell your primary care doctor, tell him you have no symptoms, and have an RF factor blood test every six months or one year or whatever. That sets a baseline, and if it goes up dramatically or you develop symptoms, you can go from there.

3

This is the route I would choose, primarily because it is easier to treat those kinds of things before symptoms become drastic enough that they are hampering sufficiently to a civilian that they seek diagnosis and treatment. Sometimes the disease process driving those symptoms can’t be completely walked back so it’s worth ruling them in (or out) earlier rather than later.

That said, @Kent_Clark also made a wise point and you might want to set parameters with the rheumatologist that you are willing to go ‘this far and do xyz number of tests/visits’ but no farther.

If it is easier, write down your concerns and your parameters before the first visit and hand it to them. I’ve found that easier than initiating the conversation verbally.

4

I suggest you ask your orthopedist or primary care physician to have another test done, Anti-CCP antibody test, as RF factors can be found in people with other autoimmune diseases and even in some healthy people. And some people with RA have little to no RF factors. Doing both tests provides a more accurate diagnosis than only using RF testing results.

So this will make the visit to the rheumatologist more productive since he will have more information.

5

You could order it yourself without going through a physician in most states using Quest Health or Labcorp OnDemand but this is going to be more expensive ($110 or $119) since you are paying the full cost without the Medicare cost sharing. These have both tests.

6

She ordered a bunch of other tests as well, all within normal ranges (for those that have a “normal” specified).

  • WBC 7.2 (normal)
  • RBC 4.69 (normal)
  • Hemoglobin 13.2 (normal)
  • Hematocrit 40.4 (normal)
  • MCV 86 (normal)
  • MCH 28.1 (normal)
  • MCHC 32.7 (normal)
  • RDW 14.0 (normal)
  • Platelets 219 (normal)
  • Neutrophils 66
  • Lymphs 20
  • Monocytes 10
  • Eos 4
  • Basos 0
  • Neutrophils absolute 4.8 (normal)
  • Lymphs absolute 1.4 (normal)
  • Monocytes absolute 0.7 (normal)
  • Eos absolute 0.3 (normal)
  • Basos absolute 0.0 (normal)
  • Immature granulocytes 0
  • Immature grans absolute 0 (normal)
  • HLA B 27 Disease Association - negative
  • Antinuclear Ab by Multiplex - negative
  • Erythrocyte Sedimentation Rate - 27
  • C-Reactive Protein - 1 mg/L

None of those are named anything like “anti-CCP Antibody test,” so unless it was named something else here, the test was not taken, or else results were not returned (yet). She did complain there were two test results that hadn’t been returned and she didn’t know why (and she didn’t say if she was going to try to do anything about it). So it seems like she is just pushing me on to the next doctor without doing a thorough grounding, presumably because whatever it is appears to be outside her specialty.

What kinds of things? I get the idea of staying ahead of symptoms, but I would think one would want to have better evidence than one test before hunting for stuff that (most likely, in my untutored opinion) isn’t even there. I admit to being prejudiced.

7

I think that’s the mark of a thorough doctor, rather than having one who just says, “Oh, your blah-blah is a little high, and while I know nothing about blah-blah, I’m going to give you some educated guesses.”

So see the “next doctor,” but don’t think of it as another doctor diagnosing another problem. Look at it as a consultation. Doctor A told me this. I’m feeling pretty good right now, so tell me what I should look out for, and when I should get tested again.

That’s it. Not a confrontation, just a straight up request for Doctor B to explain what Doctor A didn’t feel qualified to talk about. Most likely all the rheumologist will do is recommend what they call “watchful waiting.”

8

With follow-ups every 3 months, forever.

I am a cynical old bastard. Can’t help it. But you give good advice.

9

Don’t jump to conclusions, it might just be once a year. Hell, some cancer survivors have follow-ups even longer than that.

10

It suggests that there is ‘nothing there’ in only up to 10% of healthy elderly How sure are you that you are in that 10% instead of the more likely 90%?

11

Here is a good patient overview of that RF and why you might want to have it followed up by a rheumatologist rather than an orthopedist or primary care. It is from the Mayo Clinic. The Cleveland Clinic also does excellent fact sheets.

https://www.mayoclinic.org/tests-procedures/rheumatoid-factor/about/pac-20384800

12

Many doctors have an option to reach out online with questions or updates that are screened by a MA or PA. The patient portal on my PMDs website has a messages feature.

‘Why do you think I need this follow up, are you just being thorough, or is there something that causes irreparable damage before I get symptoms that you’re worried about?’

13

I’m pretty sure this is an example of base rate fallacy. It isn’t the case that 10% of the people who test positive are healthy and the other 90% all have an autoimmune disease of some sort, it’s that up to 10% of of the general population in the OP’s age range tests positive while actually being healthy. The other 90% includes the “true” positives who really do have the disease, but it also includes all the people who tested negative, presumably a much larger group. Without knowing how many people are in each of these groups, we can’t know what the OP’s odds are.

14

I have decided to go ahead with the first appointment with the rheumatologist. When I called their office, they requested that the referring physician fax them my relevant records, which they will review and then they will call me to schedule an appointment (or else to tell me why they don’t need to see me, I suppose). I have passed that request back to my orthopedist.

15

NOT second guessing the decision to see the specialist but yes this is exactly the base rate fallacy - pretest probability, the priors, matter.

Healthy 77 year old single joint consistent with osteoarthritis, no systemic symptoms, no other joints acting up, normal inflammatory markers (the ESR and CRP) … pretest probability of true disease is same as general older male population risk of (looking up) roughly 0.1%.(higher in women).

Positive predictive value is under 1%. In a healthy older male population without symptoms of RA and without lab signs of inflammation the test will be a false positive over 99% of the time.

Now with different priors - symptoms consistent with RA, elevated inflammatory markers, it is much more likely a true positive. Probably 50/50 ish.

16

This makes no sense to me. If it’s true, the test would have no value except in conjunction with a bunch of other tests, and that seems to me to be something that an MD in a related specialty (orthopedics) would know. Why would she have ordered this test without the other tests? Why would she have immediately referred me to a specialist without the other tests? Should I conclude that my orthopedist is incompetent?

(I am assuming that “lab signs of inflammation” means other blood tests, or other diagnostic tests like X-rays or something.)

17

No. It’s a pretty knee jerk panel for orthopedists to order. And their competence is mostly centered on what procedures are or are not needed and doing them well. But understanding the importance of priors and why even tests with much higher specificity than RF’s nevertheless have huge false positive rates when pretest probability is low is massively underappreciated even by many otherwise fantastic docs.

It is related to routine pre operative lab testing on generally healthy patients. Despite guidelines out and reaffirmed for something like 20 years to NOT do them, that they more often result in false positives care cascades of other tests and consultations, even treatment, sometimes with real harms, they are still requested by surgeons with high frequency.

The attitude is hard to change: more data is better. It very often actually is very much not.

To be very clear, for all I know you actually have other signs and symptoms that raise the priors, despite the OP sounding like you don’t. Follow your doc’s advice.

But the issue is an important one and poor understanding of it is endemic.

If interested a better explanation than I have struggled to give:

18

For the record. the doctor who requested this battery of tests is not the orthopedic surgeon, but the orthopedist who referred me to the surgeon. What she said was that something she saw in my lower back on the hip x-ray made her wonder whether I had something called ankylosing spondylitis, which I gather may be a rheumatoid-related condition. So I guess that would count as a prior, even though I have no symptoms discernible by me, i.e. no pain or stiffness in my back, which I reported to her in answer to her questions.

19

Orthopedist and orthopedic surgeon are synonyms. Some are more general, some very specialized, some do lots of surgery, some are less surgically focused. There is also a separate specialty of physical medicine and rehabilitation (PM&R) often referred to as physiatrists.

I’m being a bit pedantic I know. :slightly_smiling_face:

Anyway, nah. Ankylosing spondylitis is pretty much defined by symptoms onset age 45 or below and the radiologic degenerative look alikes are common with aging.

But to be clear, I am NOT dinging on your specific general orthopedist, or on orthopedists in general (despite the old joke about how to tell an orthopedist and an internist apart at an elevator? The internist stops closing the door with their hand and orthopedist with their head. :grinning_face:) It is a pervasive issue in medicine and a mindset that testing more is better, coupled with a thought that every “abnormal” must be chased down thinking that otherwise they might have liability in the rare true positive case. Really good and otherwise smart docs do it all the time … “can’t find a zebra if you don’t look for it” and the smartest docs can think of the most zebras. Driven by the anecdotal very rare case found once.

Arthritis panels are the bane of rheumatology. Very commonly ordered when there is no real clinical suspicion, with many rheumatologist consults for false positives as a result.

at least 50% of laboratory investigations, including RF, ANA, ENA, and anti-dsDNA, are inappropriately ordered. More selective ordering of the above tests would lead to marked cost reduction.

The cost is not just of the test, or even of the consult. There is an increasing shortage of rheumatologists supply compared to demand. The consult for a false positive lab with no consistent history or exam is a fairly low cognitive work visit but a cost to the system is that those who need that appointment space most then have to wait longer.

Again NOT telling you to not keep the appointment! Not aware of all your specifics. Take your own trusted doctor’s guidance to heart, they have examined you. I’m not even an internist and in pediatrics we are blessed with often having low priors … but even in pediatrics doing nothing is usually much harder work than ordering tests and making referrals.

It’s more my general soapbox advocating for us in medicine to be better stewards.

20

To continue my rant. I have a not insignificant number of parents who request broad testing just to screen, unhappy that we don’t do blood work more often routinely excepting very specific screening, and that we instead order only when we are suspicious of something from the history and the exam. It is much easier to just order it than to explain the why. And probably would give higher patient satisfaction score for the visit!