View Full Version : I'm entering the health care rabbit hole
So I noticed some flank/rib pain on my left side several months ago but attributed it to shoveling dirt for several weeks while doing some landscaping. Then a few weeks ago, I started having some other symptoms that indicated possible kidney/bladder issues. I went to my new primary care doctor, saw his PA and since there was microscopic blood in urine, she sent me off for an immediate CT scan. All of my testing shows no infection, no stones, no bacteria, no cracked ribs... - that is to say, everything visible through testing is negative. So now I have visited with a urologist who says I need another CT with contrast and some other tests to rule out bad stuff. I am a person who does not have a lot of faith in conventional "healthcare"; I think we are over-screened and over-drugged in most instances except in emergencies. It is interesting that not one doctor has actually laid hands on me - only ordered tests. I am starting to panic now because I know that once you enter this rabbit hole, the bills pile up and stress mounts while doctors chase symptoms and order test after test or send you to yet another specialist. Aaargghh, what to do???
Hugs is all that I can offer but sending good thoughts your way.
When there is not an immediate "this is it", it becomes a series or "rule out possibilities". It's been this way for a very long time. Start small and least invasive. Why do a CT with contrast if it's not indicated? Subject a patient to chemicals unnecessarily. I'm not sure what you want in a physical exam-if you wanted a full physical exam as a new patient that should have been part of the request when scheduling an appt. Your primary complaint doesn't warrant a physical exam IMO. You gave clarity in your complaint.
As a healthcare provider, I schedule an appt for what I want/need. I get what I ask for.
Due to the letigious status of our society, precedence supports ordering tests as standard of care .
Do I love it? No. It's often ridiculous. But it is reality.
Case in point: one of my favorite general surgeons said: I have a 95% accuracy of looking at a patient and hearing their symptoms to know they have gallbladder disease. But testing and CT scans are demanded by my patients before they schedule surgery. This conversation was in the early 90s. So full lab panels and an CT ultrasound. Yup, wasted money but happy patients.
One of my favorite orthopedic surgeons received a B grade from Blue Cross: didn't order enough MRIs on knees/shoulder patients. His surgical outcomes (that's 1yr result) were excellent. In 20 years of working with him he had 1 ACL call that in fact was not torn. That is an amazing track record. And I watched him do the Lachman test one last time before surgery--that is the accepted definitive diagnostic tool.
So what would I do? I would walk the series of testing requested if my pain was persistent and I wanted it resolved. You have every right to say no-every doctor order is a suggestion. But that will not get a diagnosis.
When there is not an immediate "this is it", it becomes a series or "rule out possibilities". It's been this way for a very long time. Start small and least invasive. Why do a CT with contrast if it's not indicated? Subject a patient to chemicals unnecessarily. I'm not sure what you want in a physical exam-if you wanted a full physical exam as a new patient that should have been part of the request when scheduling an appt. Your primary complaint doesn't warrant a physical exam IMO. You gave clarity in your complaint.
As a healthcare provider, I schedule an appt for what I want/need. I get what I ask for.
Due to the letigious status of our society, precedence supports ordering tests as standard of care .
Do I love it? No. It's often ridiculous. But it is reality.
Case in point: one of my favorite general surgeons said: I have a 95% accuracy of looking at a patient and hearing their symptoms to know they have gallbladder disease. But testing and CT scans are demanded by my patients before they schedule surgery. This conversation was in the early 90s. So full lab panels and an CT ultrasound. Yup, wasted money but happy patients.
One of my favorite orthopedic surgeons received a B grade from Blue Cross: didn't order enough MRIs on knees/shoulder patients. His surgical outcomes (that's 1yr result) were excellent. In 20 years of working with him he had 1 ACL call that in fact was not torn. That is an amazing track record. And I watched him do the Lachman test one last time before surgery--that is the accepted definitive diagnostic tool.
So what would I do? I would walk the series of testing requested if my pain was persistent and I wanted it resolved. You have every right to say no-every doctor order is a suggestion. But that will not get a diagnosis.
I've also been told by many doctors that they give patients prescriptions because that's what patients expect. They feel like they wasted the cost of the office visit if they don't get some tangible resolution, and that usually takes the form of a script.
So we can say the doctors over-order tests and over-prescribe medications, but as Gardnr said, they are often just trying to meet patient expectations.
I had a physical back in early May, mentioned the side pain and that doc asked me if I wanted a lung x-ray? Huh? I declined that . I asked the urologist if after all these tests, do they ever come back not showing anything abnormal? He said in his experience...about 90% of the time so I am not sure why he is wanting this scan with contrast which is so expensive that it has to be authorized. I asked him about having reactions to or damage from the dye and he said it is rare. I am flummoxed because I do not know who is on first and I don't want unnecessary tests if there is a simple way to figure out what is going on. I gather there can be many reasons for my symptoms. Rabbit hole...
rosarugosa
6-28-18, 6:00pm
Pinkytoe: I certainly hope they rule out anything serious. I do know from what my DH has been through these past 6 years that blood in the urine can be indicative of kidney or bladder cancer. It doesn't have to be, but I'm sure those are some of the things they need to rule out. If you had one of those conditions, it wouldn't be a good idea to leave them unaddressed. Wishing you the best.
IMHO the best way to avoid getting lost down the rabbit hole is to arm yourself with information. pinkytoe, do you have the time and ability to research your symptoms on-line or at a library?
Doing this will, IME, give you a better sense of where to look next for answers. Perhaps there are less-invasive or more-specific tests which can rule out multiple possible problems. Or you may find a set of symptoms for an illness that you would want to explore further with your doctor -- or that you do not display typical symptoms for an illness for which they want to run an invasive test. This education also can give you an idea of which tests are there to CYA ("We always run that one.") and which invasive and/or expensive tests are not likely to give you information in which you (and your doctor) can have much confidence.
I'm not suggesting you be your own doctor; just that it is smart to be as educated a consumer as you can be and that someone (you) has to manage this whirlwind of specialists. If nothing else, you'll be able to ask pointed questions when someone starts running down an odd trail.
You might also get a second opinion once things narrow down a bit.
I am prone to health anxiety in the first place and have tracked down every single symptom and all the potential causes/treatments. The issue is that many physical complaints can be cause by a number of totally different conditions. This doc began by stating that he was following the standard of practice in looking for symptoms which includes the invasive ct scan with contrast dye. I asked him a lot of questions but he was a good salesman. Could be that my insurance won't even allow it or may recommend another type of test first - that remains to be seen.
Don't overlook the profit motive. The medical establishment likes to blame the patient for costs that are arguably the result of greed.
I hope this turns out to be nothing and that you escape the machine unscathed.
Maybe you could seek out a second doctor, to find one you can trust. Are there local people you can ask about who they like and trust?
I was going to an eye doctor here and did not really trust him, and a local person recommended someone else, and it was night and day.
If you are calling your current doctor a "good salesman," it does not sound like the trust factor is there, which makes it difficult for both parties.
I hope it's nothing too.
I've already got anxiety about going in for my yearly BP check in 2 months because I'm sure he's going to ask for bloodwork, labs, etc because I've been a patient 4 years and refused all that so far.
I have called insurance for guidance on the costs of further testing and that part is OK. I am terrified though of having a contrast CT done since I am so sensitive by nature (and perhaps psyche) to such things. I suppose I could start all over with a second opinion but my experience in the past has been that most doctors follow the same protocol for whatever it is they need to check out. The other factor is that all of my other indicators are completely normal so naturally, I assume that whatever it is that might be causing my symptoms may pass with time. I recall reading recently that a very high percentage of conditions that people see doctors for eventually return to normal on their own.
I know my hideous back pain did, but I guess there is a risk in doing that, if it is something more serious and hidden, so that argues for the test he is talking about, to rule that out.
I just gave up and rode out the back pain since the opioids they prescribed were intolerable, I could not work.
Teacher Terry
6-29-18, 12:46pm
Most back pain is muscle related which is why so many back surgeries don’t help. However, I knew someone with back pain that ended up being bone cancer. I had the contrast done when they thought I had a heart problem. I changed cataract surgeons because the first was a paranoid nut that was having some kind of breakdown even though he was good in the past. Other patients reported the same thing to my doctor.
Most of my ailments have passed the test of time, so to speak. The (self-diagnosed) gall bladder attack was a bit iffy, but it went away with only a little lingering discomfort, never to return. Unfortunately, the arthritis seems to be here to stay. I agree that very few symptoms require attention--I joke that uncontrollable bleeding, intractable pain, compound fractures, and the inability to breathe are my benchmarks for consulting a doctor. (I've since added stroke symptoms to my list.)
My SO's sister reported pain to her doctor for years; he brushed it off and prescribed some kind of analgesic medication. Finally, she broke her hip and was diagnosed with bone cancer. She died within the month. I think that was a blessing--she was spared the fear of a diagnosis and the expense and pain of ineffective treatments.
I suppose I could start all over with a second opinion but my experience in the past has been that most doctors follow the same protocol for whatever it is they need to check out. One possible way to counter that could be to get the second opinion from a doctor in another medical system, if that's possible on your health coverage. My experience is that protocols tend to standardize within a given organization. Around here, if your regular Allina Medical doctor says "contrast test", it's very good odds that the Allina Medical doctor across town will say "contrast test" too. But a Fairview Health doctor's protocol can be different. Just a thought.
Hi Pinkytoe, I can't remember your age. Is it possible the blood in the urine was from your period? Is it possible to re-check your urine for blood?
I've read that a non-contrast ct scan is the best thing for seeing stones, but you could have blood in the urine for other reasons....which might require the contrast.
What kind of labs were drawn?
Do you have any other symptoms at all?
Hi Cathy-
I am well past period age. The blood is microscopic. The nurse told me that many people always have minute quantities of blood in their urine. I have already had one CT a week ago with no contrast to check for stones and it showed nothing. All my other insides looked clean on the scan too. This doc is saying they now need to do one with contrast to look for other things. Seems like the first one would have been enough if he is looking for tumors, etc. and I don't want all the radiation if not necessary. I have some very mild on and off again left side rib pain and have to pee a lot. Also some very mild abdominal discomfort. I have had multiple urine and blood tests - all normal. Actually, feel very healthy these days except for this and the panic that is setting in about how to proceed.
I have some very mild on and off again left side rib pain and have to pee a lot. Also some very mild abdominal discomfort. I have had multiple urine and blood tests - all normal. Actually, feel very healthy these days except for this and the panic that is setting in about how to proceed.
I cannot vouch for the accuracy of these, but it's a place to start......
https://www.buoyhealth.com/current/causes-of-frequent-urination-women/
https://www.buoyhealth.com/
pinkytoe........I have fibromyalgia and lots of pain everywhere. Sometimes something feels serious.......but it might eventually subside. I have to pee a lot too........but I think it's my pelvic organs falling down. My abdominal pain and my peeing get worse if I lift anything very heavy. I'm wondering if you have some problems like this from when you did that work you mentioned. There's no reason why you couldn't tell the doc that for personal reasons, you need to wait on the ct scan for awhile.........and just see how things go. You could also sometime see a GYN and she could give you an exam and tell you if your bladder is falling a bit.
If you do go ahead with the contrast ct scan, all I can say is it's not bad at all. I'm very sensitive to meds, plus I have a lot of anxiety with tests, and all the contrast does is make you feel very warm in your lower abdomen/crotch area, for maybe 10 seconds......then it's gone. If you think you'll continue to worry about what it is, then just go for the ct scan. But like I said above, I think it would be really wise to repeat the urine test. It may be normal next time. Tests aren't always accurate.
If you're going to worry a lot about your pain........just get the scan, so your worry can be put to rest.
These kind of decisions are always difficult, especially when money is an issue. But I might also add that in the past, I have called the hospital, etc., billing departments, and as long as you pay a little each month, they are okay with that.
Yep...I'm already on the payment plan as the bills mount.
pinkytoe.....I know this is a difficult situation. I think a lot of us have good reason to question some of the choices that doctors make. The seem to take the easy way out sometimes, by ordering a lot of tests, rather than having good clinical judgement.
I guess you just have to decide for yourself what you feel most comfortable with. The only thing that is sort of a red flag to me, is the blood in the urine.....and that's why I think it would be good to repeat that first. But if blood was still present, you'd want more tests, and the urine would be one more test you'd have to pay for. I have tons of pains here and there that come and go.....but I think I would be more concerned if there were blood in my urine.
Please keep us posted on what you decide to do and how things progress. I'm hoping the best for you.
By now, I have had another CT scan -- this time with contrast. I have been avoiding the appt as the CT was so unpleasant and yielded nothing of concern. The doc says "standard of care" is that I have yet another invasive test. I have a whole list of questions but when I call the office, I get the same old schpiel about how this is how they proceed with all patients with this symptom. I asked if I could make an appt to talk to the doc about the necessity of the final test and was told he would talk to me on the day of the procedure. So by now, I am confirming my confirmational bias that doctors aren't really in the healing business anymore.
Teacher Terry
8-9-18, 4:31pm
That is totally ridiculous that you can’t even get a appointment to discuss it with the doctor. I would get a 2nd opinion. What test do they want now?
Are they recommending cystoscopy?
ETA: I'm in a bit of a rabbit hole myself, but everything that has been recommended was explained to my satisfaction by one of my doctors. I definitely consider them my paid expert consultants, with me being the final decision maker. It at least gives me the illusion of some control in the matter!
Don't worry man, you will be alright. Just find a good doctor, but the tests are necessary. if they start medicines without knowing the actual problem that is also a problem, so have a faith in God and find a good doctor.
I'm sorry you're caught up in the meat grinder, pinkytoe. With luck you can escape with your health and autonomy intact.
Are they recommending cystoscopy?
Yep. They have examined every inch of my anatomy so I guess this is the last test. I tried to explain that having all of these tests done based on one urine test done six weeks ago doesn't make sense to me. So...my plan of action is to have another urine test done by regular doc. If it is still positive for blood, then I will roll over and give in to one more test. Bleecchhh...I hate this stuff...
Wow, my Doc is on the other end of the spectrum.
When I show up with similar symptoms (and urine test shows blood in urine) she just says I have a urinary tract/bladder infection and puts me on a round of antibiotics. No other testing.
I'm a woman and we do get those pesky infections once in a while.
Teacher Terry
8-9-18, 9:21pm
I had one once and that is what my doctor did.
rosarugosa
8-10-18, 5:48am
I think that's a good plan, Pinkytoe.
I had one once and that is what my doctor did.
I had one some 25 years ago, and I was prescribed killer antibiotics (one of the quinolones!) and then they tried to upsell me a CA-125 test (for ovarian cancer) for no apparent reason. Where is that rolling on the floor emoji when you need it...) I'm lucky I survived with my Achilles tendons intact.
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