Healthunlocked and the mods of the forums regularly advise us not to blindly follow the advice of randomers we meet in the Web. We are told to always consult our doctors before embarking on a new path.
And rightly so: there are outright loonies on the Web and the idea that we know better than trained doctors is problematic.
On the other hand you have doctors who are lazy, doctors who are not up to speed on latest developments and paradigms for treatment which appear to have more to do with pharma profits than they have patient health.
In the vascular calcification thread, I cited research reviewing the literature on statin efficacy. That review asserts falsification and massaging of figures to support the lipid hypothesis (I.e. cholesterol bad / statins good). They conclude that there is no evidence that statins benefit us. They also highlight risks of taking such medications.
The authors of that paper are doctors and at least one is cardio professor. They would not prescribe statins to me. My nephr is a professor and did prescribe statins to me.
These doctors differ, meaning the advice to consult my doctor terminates at the question "which one?"
What techniques and methods do you utilise (if any) to evaluate the directions given you by your doctors?
Is there any sources/authorities you go to to cross check your doctor. By what means did you evaluate those authorities?
Any other ideas/suggestions on how best to navigate this important but mine-laden path? Clearly, the base advice "consult your doctor" whilst better than the advice "go on a solo run", is insufficient in itself.
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Skeptix
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Hi Skeptix, Interesting questions or inquiry. I always consult the whole team before taking a new med and I tell the prescribing doctor that I am going to be doing to do that before I agree to take the med. Since they are all in the same medical center and have access to each other's reports, they all can weigh in. But here is the bottom line and I am clear about it: If my labs go downward after taking a new drug, its not going to be continued. I had to do this so far only once when my old PCP changed my diabetes med in order to take one that was more kidney friendly. The result was out of control sugar levels all the time. He said it needed time to work. Well I said, the damage it was causing from not controlling my sugar was not worth the risk. I had left over from the old drug and went back on it without his permission. We got rid of him as our PCP.
Story: I was prescribed blood thinners after a clot back in 2003. In 2020, my PCP wanted to increase the dosage to be therapeutic. I said no. I did not have any other thrombolytic events and blood thinners are not great for the kidneys. She sent me to a hematologist twice who did extensive testing and guess what.... no need at ALL for me to be on a blood thinner. 17 years I was taking that med and doing labs and there was no need. But if I hadn't looked into the effect of blood thinners on CKD and fought back, she would have upped the med to meet the criteria set from the Med Center. It was all about meeting numbers, not about me.
Another story: I am currently on a GLP-1 inhibitor I am taking mostly to lose weight. There is a lot of EB writing about this drug and the information is conflicting. One article will say its ok for kidneys, actually great for CKD, but at earlier stages than I am. Some say it can cause acute kidney injury. But if you read in, that's because of not being hydrated. Drink water, and you should be ok. I did a lot of reading, attended a lot of seminars on these new drugs and wrote to my nephrologist and said I wanted it. She at first hesitated and then four months later actually recommended it but would not prescribe it. I had to go to my (new) PCP, who again, was hesitant but did prescribe it. It's too soon to see if anything bad is happening. It does an amazing job of controlling my glucose to the point I am worried my A1C may get too low and they will stop it. But the side effects are nasty and even being on it a month, my body does not like it. So it will be up to ME as to if I stay on it.
Most patients follow their doctors completely without hesitation or questioning. I encourage folks to not do that. Unfortunately, most evidence based journals are hard to read and understand. But all doctors swear to do no harm. So if they do not take the time to really dig into a med or treatment, then they are not the right doctor. But we need to do our homework too and ask questions and demand what is best for us.
Its not easy. How comforting it would be to rely on someone for advice, but it's not always possible. I listen, I try, but I evaluate , too. Next week, I see a new primary doctor because last one did nothing but day " see you in 6 mos." So far kidney doctor is great, but I will challenge.him if I have to do so. I feel as if one cannot lose control of your own treatment otherwise, you'll be lost. When one says "team" that's includes us as an active part. Best,
Such conflicting stuff on Statins, and most of it quite old info.
I found this University of Texas video, which is only a couple of years old, and seems to indicate that statins are of benefit with ckd, until you are on dialysis. Although having said that, they don't suggest stopping them if you've been on them a long time either.
I did my own study. I've always had high cholesterol. it varies from 220-265, Always been that way. I tried statins in the beginning but had to stop them due to leg pain. I recently had a bunch of cardio tests done. My arteries are great, well good for a 78 yo woman. I see no need to take something that might or might not help me, especially one with the possible side effects of statins.
That's something I ought to look at - get a view of my vascular system and see if there's anything to do about it. You could be sitting there wondering about vascular calcification only to find out that you've none at all at all.
If you've great arteries and statins alleged benefit is preventing your arteries from becoming not-great then there is, indeed, little reason to take 'em.
They're not exactly cheap either. I was prescribed them, bought a pack then held off as I'd started on this low protein diet. Ended up binning them but they cost something like $50 a month or some such. That's €600 a year, You can buy a few bottles of very nice wine for that amount of money!
I look to Mayo Clinic and Wed MD for medical info. Drugs.com for drugs and labtestsonline for lab tests. For drugs I go by how the drug makes me feel. I've just started Lokelma for high potassium. I'm not liking how it makes me feel. I have an apt in 2 weeks with nephro and will discuss other options then. Story: I went in for a kidney biopsy last week. I had to stay over night for observation. My BP was high, so the hospital doctor gave me Hydralazine for it. I had a bad reaction overnight, none of the nurses said what the side effects to it were. In the morning my doctor came by and said i was good to go. The hospital doctor wouldn't release me because of high BP. I tried to tell them my BP was high because of where i was. I finally told them I'm leaving against medical advice. Once i got home and settled in BP was 129/61. So yes we have to be our own advocates.
Darn that Hydralazine al.ost killed me last year when new nephrologist prescribe ed it and kept increasing the dose too fast. After it caused serious urine retention, major infection, and an ER visit, he kept prescribing it!! That's when I knew I had to become active in my own care. As soon as I changed nephrologists, I was put back on my old BP meds with some tweaking but sadly never recovered my previous GFR status.
Also had two rounds of statins in my life which eventually caused two experiences of serious leg pain. No more statins for me.
Yes it can be confusing , doctors come from different schools of beliefs. I hear statins are not good ( don’t know why which is not helpful) maybe reading on the net and getting more than one doctors opinion is helpful.
After almost 40 years as a nurse my faith in doctors in general has diminished to almost zero. This also holds true for veterinarians as I do animal rescue. I could and should write a book on the mistakes made by the medical profession and the lives it has cost.They have certain skills we need, but bottom in e is research research nd research and remember all of us are different with different genetic backgrounds and respone differently.
Never be afraid to question your doc over and over and make him substantiate what he is telling you. Pretend he is your car mechanic and ask for real proof.
I have this question I ask the doctors.." Gee.. if you do not know the answer please refer me to someone who can help"...
I'm saying that once a dr receives his (or her) degree and puts in the time to receive certification the active mind becomes a blank slate ready to receive information mainly from pharmaceutical reps. The argument made all too often is that physicians don't have time for research. So, learning what is new and possibly important to patients is neither valued nor recognized as valuable -while seminars about how to create billable office time is . If a person needs a prescription, a dr's office is the place to get it. If a person needs heart surgery only a dr can perform it. But if a person needs information or a cutting edge approach to a problem the dr's office is probably the last place to get it.
Agreed. I've a new doc having moved from a practice that seemed to be working to get you out the door as soon as you walked in. They moved recently from some period buildings to a brand new spanking glass and steel edifice. No doubt testimony to their ability to crank in the money. They were charging €55 a visit, my new doc, who is far more down to earth and takes the money from you herself ( no receptionists to pay) charges €35.
Sounds like your prices are a little more reasonable than ours. I was just billed $300 for an appointment to ask a question about a medication I was taking. The dr's online portal wasn't working properly and there isn't an option of a patient speaking to a dr. on the telephone so I was told to come in to ask my question. I have registered a complaint but I was told that according to law (I don't know what law) they are required to charge me. End of my relationship with that medical group! BTW they have a breath takingly attractive shiny glass and brick structure which is beautifully landscaped as well as many employees who guard the dr.'s periphery to insulate her from patients who she rarely, if ever, touches. A nice gig.
Prescriptions are mainly faxed to pharmacies these days. The fax number would have to match the Dr.'s office's fax. Dr.s rarely hand out a paper Rx in the US.
This is Oirland. Although we've become the 51st state of the USA with the amount of corporations taking up residence here for tax dodging purposes, we still do things the old fashioned way often enough.
It occurred to me that it wouldn't be too hard to get yourself a supply of morphine going with the aid of some photoshop.
Just buy a 2nd SIM card for your phone and put your best consultant's receptionists voice on when a suspicious pharmacist rings (I saw The Sting once
Working years in medical malpractice law against doctors and hospitals, I agree with you about the faith that I have in most physicians. Also, my sister worked as a Chaplain in an Atlanta area hospital and in Orlando Florida and can tell you some pretty hair-raising stories about doctors in emergency rooms.I consult Healthgrades.com, which is a website on which doctors or practices list their names, but the reviews are from patients. I check out the doctor.
I had a great nephrologist at my previous dialysis clinic, but when I changed clinics as a result of the pandemic, I lost him. He said that most physicians do not understand or take into consideration how much our kidneys perform various, important tasks for our well-being. He said he learned from his years in medical school that doctors focused very little on the kidneys. I hear that today, the function of kidneys and their connection to our well-being is much more of a thorough curriculum.
One thing I did learn (from being in the hospital for a hip replacement in 2016) was that my first nephrologist was not very well liked by other doctors (not in the nephrology field) because he was vociferous about his knowledge with kidneys and how medicines and other things affect the kidneys so much. For instance, he would tell an orthopedist or a cardiologist that they cannot prescribe certain medication because of the patient's CKD or ESRD status. I guess they thought he was a know-it-all, but I'd rather have a know-it-all for a doctor than one that knows nothing!
I tend to rely on the specialist for specific areas. Two cases that came up Monday:
1. I was in the emergency room with severe abdominal pain. They wanted to do a scan and I asked if contrast would be used, since I have CKD. The attending doctor said my kidneys were not "that bad" (of course he has no idea how hard I work at keeping the numbers not "that bad". I refused the contrast and the scan came out just fine;
2. The person attending me in the e.r. wanted to administer the gastric tube down my nose. Fortunately I had already had a discussion with the surgical resident about the tube and he said that, in most cases, the problem resolved itself. He spoke to my surgeon who said they would watch and see what progressed (I have had the procedure once and it is horrid). Well, when the guy came in with the tube, I said no. He was taken back and wanted to push it. All I had to do was tell him my surgeon said no. I did not need the tube and the situation did resolve itself.
Educate yourself, choose your doctors carefully, and rely on your team.
I got a second opinion. I researched top nephrologists in my state and cross referenced to which accept my insurance and picked a nephrologist who didn't work with my current one. She thoroughly reviewed my record and pointed out she didn't know my current nephrologist, but concurred with his opinion. It was both comforting and frustrating since there are really no treatments or cures and no one knows how long I have before dialysis.
I'd be at loss as to how to establish 'top'. My usual go to is word of mouth but unfortunately I don't know a lot of CKDers. Except on here of course!
It wouldn't surprise me that another nephr concurred with my own's approach*. My own is operating according to a common paradigm: no aggressive treatment, dialysis inevitable. You could say its a fatalistic paradigm.
My Dr.s do all stay in the loop since I'm in a network and they can see the notes each one wrote, plus they email and update to my primary when I see a specialist.
Since I have a medical background I have to do my own research just because I'm curious. I use PubMed.com. It has all the latest research, studies, etc. and everything is available to physicians, nurses, any medical staff, and of course patients. It is written in medical lingo because the articles are mostly from medical journals. You can print out anything of interest or that you feel may relate to your health and discuss it with your PCP or specialist.
You can put in very specific search terms such as in your interest on statins I'd put "Statins and Stage 4 CKD". You'll most likely get many studies or write ups on individual patients.
Looped up thinking isn't the way here - I've to send my nephr bloods myself to my GP. Not that I'd think they'd talk to each other anyway.
My RD and nephr are familiar with each other, working in the same renal unit. But the treatment paradigm is probably shared as well so it's more likely singing from the same hymnsheet than cross referencing and sharpening each other.
Finding papers is interesting and with my mechanical engineering background I can sort of make sense of them.
But its how to find somewhere between the two: obtining the optimal medical care without having to become a medical yourself! Maybe that's not a circle that can be squared.
Here's a great resource too - the kind of thing that helps bridge the gap. Tried Facebook kidney groups but the noise is incredible and it's very hard to keep a track of things.
Many Drs believe they know everything after med school & if a patient tells them to read some new research on your health the good drs will at least humor you & give it a look but the older drs & overworked younger docs may not consider it & even resent you giving it to them to read as if you were one of their old med school professors putting pressure on them. Our Dr was so burned out he said outright he would not read my research. He told his colleagues to ignore me & he retired a few months later. Finding a good Dr is next to impossible but necessary. I find ER docs are the best.
You would have thunk that a doc would welcome a patient who was willing to work to get a result. Maybe there's an arrogance there as well as the time pressure. It is a lauded profession, worked hard for. The idea that us patients come in with what we've licked of the web..
To be honest, if folk came up to me, a mechanical engineer, with their little bits of lay engineering they might receive short shrift too
I have found that doctors do not even refer back to their own notes, and will continue to push treatments that have proven to be toxic and even deadly. Ex: I have repeatedly reacted extremely badly to statins, almost becoming disabled from them, and the last time developing Rhabdomyolysis in short order, and further damage to my kidneys. Yet, doctors still kept pushing me to take statins (even though my blood vessels are very clean). And, I kept refusing. So, my GP got a specialist down from 80 miles away, called me in for an interview with both of them – to once again try to push statins on me. But, instead, the specialist told me and my GP straight out that if I (ever) took another statin that I would become permanently disabled. And, he added that “due to the damage already done I had what is called ALS-Like Syndrome, and would most likely gradually become permanently disabled, and increasingly paralyzed. The same would apply if I took any more flu shots. Thankfully, by refusing all statins and flu shots, I have only had mild progression of my numbness and walking ability. BUT, my doctors still continue to try to push statins and flu shots on me. Even when I remind my GP of the specialist he himself brought in, and what was said, by the next year the GP is once again pushing statins and flu shots at me.
Also, my husband has virtually instant loss of memory when taking statins, called “global amnesia”. I took him off all statins myself and reported this to the GP. It is in his record, yet the doctor still orders statins after every set of labs. Even when my husband cholesterols were beyond fantastic, and labs anyone would wish for, the GP still tried to push statins on him (because he is a diabetic). Plainly if the doctor ever bothered to look in his records he would see that my husband cannot take statins, as it would mean a very fast trip into a nursing home for the rest of his life.
So apparently doctors just go by rote: the books say prescribe X drug for X condition, so they prescribe it blindly, not even bothering to look at the patients records.
Another instance. I was told by my nephrologist that I needed to increase my thyroid meds. I went to a NP to get the prescription. I used to take 60 mg twice a day, years ago, but I told her I was now taking 30 mg once a day and needed to increase it to 30 mg twice a day, per labs (which I gave her copies of… THE LABS SAID PLAINLY I WAS CURRENTLY TAKING 30 MG AT THE TIME OF GETTING THE LABS DONE). When I went to the pharmacy to pick up my script it was way higher than normal. It turned out she had written the script for 60 mg twice a day, even though all our conversations, and the labs plainly stated 30 mg. If I had taken what she prescribed it would have killed me, being I have heart failure.
So, I am of the same thinking as kellyscats1, and my trust in doctors is pretty much at the bottom. No. I take that back. Mine IS at the bottom. I have no trust left in doctors.
Holy crap you all have had some horrendous experiences. I struck gold with my PCP. She wanted me to try statins and I did...and for 3 months had horrible daily migraines. Even had an MRI of my head and a visit to a neurologist. It was the statins. I've had a couple of docs want to prescribe them again and I refuse and tell them why so no longer do I get the "you need a statin" bull crap. I had a toxicology test and it came up positive for cocaine...I don't use drugs...my PCP sent me an article from Pubmed that showed 60% of pretransplant toxicology tests were false positive. I've had a second test at a different lab and all negative. I made them retest cause I didn't like the first one. I look up drugs on drugs.com before ever putting one in my mouth. I'm small too so a regular prescription is too much sometimes. We now go by my weight.
What an interesting thread. I am pretty trusting of my doctors but I am gradually learning what everyone tells you--you have to become educated. I am 8 years post transplant. I was on a statin for a long time, maybe 15 years. Over the last 5 years I've slowly had more and more leg pain. My repeated complaints about the pain in my legs went nowhere and it was beginning to impact my quality of life. I think my neph thought it was the anti-rejection meds. All I got was blank stares from everyone. Finally last year, I came in again with the pain and my PCP suggested taking a statin "holiday". Within a month the pain was gone. I could go back to doing my yoga and walking on the treadmill and back to gardening. Now my cholesterol is "borderline" and she wants me back on some type of statin. I think my PCP is pretty good and she wasn't pushy but I don't know what to do. I see her in 6 months to see how my labs are. It's discouraging.
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