Gout, Drug Toxicity, PPACA

After 28 years of being a chiropractor, I was forced to retire due to a disability. What happened was this: I developed carpal tunnel syndrome in both hands. I used ultrasound, massage, acupuncture, and vitamin B6 supplements to control it for decades, but I eventually reached the point of being unable to do even the simplest task, or even hold a book, without losing sensation in my fingertips, so I decided to have the surgery. In 2012, I had a carpal tunnel release on my right wrist, but the wrist never got better after the surgery, and when I treated patients I was in excruciating pain. I had an MRI and it was discovered that the cartilage in my wrist had crumbled, forming cysts in the underlying bone, a condition known as chondromalacia. I had degenerative arthritis in other joints, so I attributed it to simply having really bad cartilage from birth.

From 2011 to 2015, I visited the same primary care doctor in Tallahassee for annual Pap smears and mammograms, and also the occasional illness. I complained of the joint pains at each visit, and also mentioned that my big toe joints hurt a lot, and that my father had gout. I asked her to make sure she tested me for uric acid when she ordered the routine annual bloodwork, and she later told me that it was normal, so that just confirmed to me that my joints were just not the most durable. I resigned myself to making the best of it, taking glucosamine and resorting to NSAIDs and Ultram when the pain got really bad (usually after doing something strenuous).

If you’ve followed this blog from the beginning, you will recall our experience with Steve’s emergency kidney stone surgery here in Ecuador was one of efficient, caring, top-notch healthcare delivered at a very reasonable price. So, when I realized I was overdue for my annual, I was more than happy to visit a local bilingual doctor recommended by many on the “Gringo network.”

My U.S. doctor had been through four different “online health portal” providers in the four years I’d been under her care. I sympathized, having gone through the adoption of the caricature of technology mandated under PPACA (Obamacare) in my own practice. I hadn’t logged into the most recent iteration yet, but now that I was visiting a new doctor, I needed to get my records, so I created a user account and logged in. My first surprise was that the top diagnosis listed in my record was “Stage IV kidney failure.”   This is a serious condition which points to a seriously shortened lifespan and usually a need for dialysis.  I recalled a few years earlier, when my bloodwork had come back with an abnormal creatinine clearance value; “probably a lab error,” the assistant said, sending me back in for a retest, which was, indeed, normal. I thought no more about it until that login, when I realized that someone had coded the diagnosis into the system to justify the retest, and it had perpetuated in my records until being uploaded to the portal, at which point the software automatically ranked my diagnoses from most to least serious, and put that life-threatening organ failure at the top of the list.  I realized that this was why I’d had trouble getting approved for a private catastrophic health insurance policy here in Ecuador: I’d assumed it was because I was overweight and they were being extra picky, but this put the denials in a whole new light!

I messaged the US doctor’s office and got the diagnosis corrected. I have little faith that the diagnosis will not pop up again later. My experience using the medical records programs approved under PPACA was that the programs functioned poorly to the point of being almost unusable, populating fields automatically and perpetuating errors, creating two and three times the work to correct them, assuming one caught the errors at all, which was sometimes impossible as the database didn’t always show you all the data it was saving. After the diagnosis was fixed, I downloaded my records to take to my new doctor. I looked back through my lab reports and discovered that, despite being assured that my uric acid levels were normal, that same US doctor had never actually tested them!

When I showed up for my initial appointment with my new, Ecuadorian doctor, I had a seat in the hallway outside her office. The previous patient left and the doctor ushered me in. She sat at her desk with her laptop and took a leisurely and thorough history. She fed the paper records I brought her into a scanner at her chairside, after reviewing them. I showed her my wrist and demonstrated that I couldn’t turn my hand palm-up or bend it outward due to the joint damage. She agreed that, with my family history and my toes hurting, my annual exam should include a uric acid test along with the normal cholesterol, CBC, and repeating a liver enzyme test which had been slightly elevated at my pilot physical when I visited the US a couple of months earlier. I’d eliminated alcohol, started Milk Thistle supplements, and stopped taking my arthritis drugs completely in the meantime, and we agreed it was best make sure that my liver function was back to normal. My blood pressure was up a little. We discussed the fact that I was obese, and that I’d yo-yo dieted so many times that I was reluctant to go on yet another diet. She reviewed my daily food intake for the last few days and the miles of walking recorded on my iPhone app, and expressed surprise that I’d lost no weight while my husband had dropped 30 lbs. without trying. I paid her the $20 (total) cost of the visit and went on my way.

I went the next day for my bloodwork, mammogram, and Pap smear. It was a little odd having a technician at the lab take the Pap smear sample instead of the doctor, but what made me really uncomfortable was having a male mammogram technician; I asked for a woman, but all five of the techs at the hospital’s radiology department were men! But in the end, it was okay. The radiologist read the films while I waited briefly, then they handed me my films and report, and the next day I picked up my lab results and went back to the doctor. Total cost for the blood work, Pap, and mammogram: $99.50.

My uric acid was through the roof. Everything else was fine, but the fact that I had high uric acid, even after giving up my daily glass or three of wine weeks earlier, meant that I had chronic gout. I had probably had gout for years. Certainly, the pain in my big toes was caused by the gout. I talked it over with the doctor, and she prescribed allopurinol (as I’d expected; it’s the standard treatment).  I went into the neighborhood pharmacy and asked for 300 mg. of allopurinol, 30 days’ worth to start; it’s available without a prescription here, like most drugs, and the month’s supply was $5.10. I took the first pill that night.

The next day, I imagined that my feet felt a little better, but chalked it up to the placebo effect, as I’d read that allopurinol takes days to weeks to work. The day after, though, I had to acknowledge that the effect was real and dramatic. My shoes were loose due to the swelling decreasing; I could go down stairs and step off curbs with no pain in my toes or knees; even my wrist felt a little better. On the third day, I turned my right hand palm-up for the first time in two years. I had a spring in my step. I walked on textured pavements which had hurt my feet before. My proprioception was coming back, too: I could feel the position of my feet in space and my balance was better.

As I researched gout, it slowly dawned on me that my US doctor’s failure to diagnose my condition might have been the cause of my disability. Uric acid crystals, you see, tend to accumulate wherever a joint, tendon, or ligament is damaged in some way, such as during surgery. The “chondromalacia” noted on my wrist MRI included bony erosions with cysts under the cartilage, a feature shared with chronic, untreated gouty arthritis. If I had been tested and treated for gout prior to my carpal tunnel surgery, I might still be practicing chiropractic today. I grieve every day for the loss of my practice; the fulfilment of caring for patients was one of the great joys of my life.

I admit to having some resentment over my US doctor’s failure to test me for the gout, and her incorrect assurance that my uric acid levels were normal on subsequent visits. Yet, I can’t fault her entirely. My reputation as an exceptional diagnostician among chiropractors was based in no small part on my thoroughness in taking and keeping patient history. I know that my effectiveness suffered in the last few years I practiced, entirely due to the use of Electronic Medical Records mandated under PPACA.  I was constantly distracted by trying to find the information I needed in the abysmal programs approved by the government bureaucracy. I switched software three times, trying to find an approved program which actually functioned, adding to the stress; I worked long hours and paid many thousands of dollars to try to get my records up to a minimal standard, compatible with what I had in my paper records. At the same time, the selfsame bureaucracy was lowering the amount it would pay for each service. Private insurers were taking advantage of the new requirements, and they were requiring more and more documentation, in forms that the approved EMRs were not structured to generate! I am sure that my US doctor’s office was going through the same endless nightmare that I was; every year when I went in for my annual, they were struggling with yet another new installation.

I started the allopurinol, and my joints got better. Happy ending all around, right? Wrong!  I got a little flushed on my seventh day on the drug. I e-mailed the doctor (she gave me her personal e-mail address and her cell phone number). She said that since I was having such a great response and the flush was so minor, to continue the medicine. 48 hours later, I was in bed with a 101-degree fever, whole-body rash, severe diarrhea, and one of the worst headaches of my life. Apparently, about 1/1,000 people who take allopurinol will have a drug reaction known as DRESS (Drug Reaction with Eosinophilia and Systemic Symptoms). The only thing for it is to stop the drug immediately and drink copious quantities of water to flush it out of your system.  What really scared me is that 1 in 10 cases of DRESS develops into Stevens-Johnson syndrome, a life-threatening condition in which your skin begins to blister and then peels off in sheets all over your body!  However, I was not one of the unfortunates to whom that happens. After I was able to leave the house again, I went back to her and got more blood work, and my enzyme tests showed some organ damage from the DRESS. I had lost 7 lbs. I was shaky, weak, and easily-winded for the first week, but I’m able to walk several miles again now, albeit at about 2/3 the pace I was achieving before. I will return for more blood tests next month to check whether my blood count and liver function have returned to normal, and then probably we will try another drug to bring the gout under control.

In the meantime, my toes, knees, and wrist hurt again, but now I know it is because of a disease, and not premature aging!  I also have been spending a lot of time reading the abstracts of the medical literature on gout and uric acid. The general public information available about it online is inadequate or contradictory, and some of it is just plain wrong, even on normally-reliable medical websites. A lot has been learned about it since I graduated chiropractic school in 1986, but it is still a mystery in many respects.

However, the following things are clear, and I share them with you now in case you (or someone you know) are coping with gout as well:

 

  1. A person with gout has a genetic tendency both towards increased uric acid levels, and towards a florid inflammatory response to uric acid crystals. If your identical twin has gout, you are 8 times more likely to have it; if your parent, sibling, or child has it, you are twice as likely.
  2. Such a person will always have to avoid alcohol (especially beer), organ meats, sardines and anchovies, shellfish, gravies, and fructose- or sugar-sweetened beverages, and to limit their intake of meats in general. I’d been on the Atkins diet regimens about ten years ago, and then continued eating more animal protein as the fashion in nutrition tended more towards higher protein and lower carbohydrate consumption.
  3. On the other hand, increased dairy consumption, coffee, vitamin C supplements (500 mg daily), eggs, vegetables, legumes, and cherries all seem to lower uric acid levels, and hence help decrease the frequency and severity of gout attacks. I had been taking vitamin C before leaving the US but I ran out and didn’t seek out a new source once I got here; I also don’t care for the cheese here in Ecuador, and I’m not a milk drinker (so now I’m trying to develop a taste for—blech— milk).
  4. Moderate fruit consumption, despite fruit’s fructose content, does not appear to increase uric acid levels and may actually help lower them.
  5. Higher dietary magnesium consumption also appears to be helpful. I used to eat magnesium-rich nuts in the US, but nuts are not so common in Ecuador, and so I’d been eating less of them.
  6. A diet which raises the pH of the urine (makes it more alkaline) increases the excretion of uric acid; in general, this will be a diet lower in protein and higher in dairy, fruits and vegetables: in other words, a diet which includes less meat and many of the foods listed as beneficial above.
  7. Any intervention which lowers uric acid levels (including rapid weight loss or drugs like allopurinol) is likely to trigger an acute attack of gout. This is not well understood, but it does mean that you cannot rely on your gout symptoms to determine your success at lowering your uric acid level.
  8. Several types of blood-pressure drugs (thiazide diuretics, beta-blockers and ACE inhibitors) will raise uric acid levels.
  9. If you can keep uric acid levels below the target range for several years, the crystals inside your joints will gradually be eliminated.

I wondered, too, what role my weight played in this disease, and whether yet another weight-loss diet was necessary. Based on studies of obese people who have lost large amounts of weight after bariatric surgery, losing weight will usually lower uric acid levels. However, this does not lower the incidence of gout attacks a year after bariatric surgery. Elevated uric acid is twice as prevalent among class IV obese people as it is among the non-obese. People with lower BMIs have a better clearance of urate via their kidneys. BUT: weight regain is extremely common after massive weight loss; fewer than 3% of obese people who lose weight without surgery, and fewer than 5% of those who lose weight with surgery, are non-obese at five-year follow-up. I have joined Overeaters Anonymous, and perhaps by following the 12 Steps I will be one of the minority of people who succeed at permanent weight loss, but counting on it to cure my gout is unrealistic.

The causation goes the other way as well: people who bring their uric acid levels down using allopurinol have an average tendency to lose small but significant amounts of weight, even without deliberate caloric restriction.  People with elevated uric acid levels often have trouble losing weight, as I did, even when they cut back their calories and increase their activity. The relationship between uric acid levels, obesity, diabetes, hypertension, heart disease, physical activity, and systemic inflammation is complex, and research on it is only recently beginning to tease out these factors and their interactions.

I am glad to be living in a country where the private health care system is alive and well. Ecuador has a safety net of socialized medical care, and no one is turned away for lack of ability to pay, but the quality is reportedly less than we are used to in North America. It also has a semi-socialized system, the IESS, similar to Medicare but open to all who pay a subsidized, low premium. It has long wait times and lots of red tape, but the quality of care gets acceptable ratings from North American expatriates. The private system, though, is quick, efficient, and very reasonable in cost. The policy we bought covers us both for $127 a month, but it has a $3,000 deductible; unless one of us has a heart attack, stroke, or other major illness or injury, I don’t anticipate that we will ever have a payable claim.

The main differences between the two systems are these: First, the IESS is less than a decade old, and during that decade Ecuador’s government has been prosperous due to the high price of oil, so doctors in the IESS system are not subject to extensive reviews, denials, reductions, or delays in payment. The only way the IESS rations care is by requiring lots of line-standing and paperwork, by the patient, for non-emergency procedures. This is not too different from the way things were with Medicare in the 1960s and 70s. It may change if the price of oil continues to drop. Providers are free to run their practices with little red tape. The billing office for the seven-story hospital nearby is about 10 by 20 feet in size and staffed by one or two people. My doctor keeps her records on her laptop. She has no staff.

Second, there is no such thing as an HMO or PPO here in Ecuador. The IESS does not set fees either, so there is no monopoly government or corporation distorting the fair pricing of fees. The fee is the fee. Part of the reason my doctor can charge $20 for an office visit, spend 30 minutes with me, and not have any staff, is that she does not have to give a steep discount to Aetna, Cigna, Blue Cross or Medicare, and she doesn’t have to submit reams of paperwork to be accredited by each insurer, and she doesn’t have to have support staff to provide stacks of notes and reports to payors in order to get paid.

Third, government certification, licensing, inspection, and “compliance” programs are limited to what is absolutely necessary. There is no mandated use of an electronic system which labels patients with incorrect diagnoses, like my supposed kidney failure! The ready availability of drugs without a prescription cuts back on administrative and compliance costs (it also makes good use of the expertise of pharmacists, who are reduced to mere pill counters in the US system). Unlike this chart:Doctors-and-administratorsfrom the US, the health care system here is composed mainly of health care providers.  Judging by what I saw at the gleaming-clean hospital, there is probably more janitorial staff than administrative staff.

Fourth, the patient here is more actively involved in routine aspects of their care: after lab and radiology results come back, it is the patient’s obligation to retrieve them and bring them to the doctor for review and follow-up.  It is a small, but significant, shift in control and responsibility, compared to the increasing infantilization of patients in the US system. It also reduces the need for staff still further.

And, finally, the culture of litigiousness is not developed in Ecuador as it is in the US. Some of this is probably because of the amount of time doctors spend with their patients here and the access they allow; there is a deeper sense of trust, and that trust runs both ways; my doctor is the mother of a small child, but she still gives her patients her cell phone number to call if absolutely necessary day or night. She trusts her patients not to abuse that privilege. When I was lying in bed with a fever and rash from my drug reaction, fearing the worst, my doctor responded to my e-mail promptly and I knew I could reach her by phone if something really serious happened. Compare that to the likely experience if this happened in the US: I would have reached a voicemail, left a message, and been called back by an assistant the next day with instructions to go to the ER.

We’ve covered a lot of ground together here! I promised you, my followers, that I would explore some issues in greater depth and also warned you that I’d ramble on a bit going forward. I hope the knowledge about gout has been useful for some of you.  I hope my thoughts about healthcare make sense to most of you. I hope, as well, that I have not overshared. Let me know what you think in the comments below!

 

 

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