But while Garber suggested that he felt that the new guidelines and AACE recommendations would help more patients get properly diagnosed and treated, he was clear that these guidelines shouldn't automatically dictate treatment for anyone who falls outside the range. Said Garber: "The TSH normal range should not be a polarizing issue. But as often seen in medicine, it's easier to agree on the extremes. When you get closer to what's marginal, it's a harder call. We need to realize that it's a continuum. If people know that this particular group is more likely to have thyroid disease than the group that's lower, it doesn't commit you to treatment and doesn't say that it's not appropriate, it says to follow it, and maybe intervene."
The Implications for Patients?My sense after speaking with Dr. Garber is that endocrinologists will not be reaching consensus on the issue of the TSH normal range anytime soon. And without consensus among thyroid experts, we are not going to see laboratories adopting the new recommended ranges.
So where does that leave patients?
First, Dr. Garber says that when it comes to making a decision to diagnose or manage patients who are in this questionable TSH range of 2.5 to 3.5, endocrinologists can be particularly helpful. Says Garber: "It's not unreasonable for someone on endocrine treatment, who is not optimally treated, to ask to see an endocrinologist." As an endocrinologist and representative of various patient organizations, this is not surprising.
I mentioned that many patients face long waits for the limited numbers of endocrinologists available. For those patients, Dr. Garber said that there are efforts underway to get more endocrinologists into the pipeline, and that the numbers of endocrinologists in training is on the rise, as are both quality and salaries of those trainees. Says Garber: "We'll never be able to take care of all the people...but we're also looking at more thyroid education for physician extenders such as nurse practitioners and endocrine nurses."
Second, most thyroid patients are actually diagnosed and managed by their primary care or general practice physicians. But not being thyroid experts, these doctors mainly rely on clinical practice guidelines, guidelines from the insurers and HMOs to provide diagnosis guidelines. And many busy doctors rely on the laboratory reports to flag blood test results as high, low or abnormal, and help them identify irregularities for follow-up.
Dr. Garber proposed a solution to this particular issue: adding a statement on all relevant laboratory reports. Says Dr. Garber, the lab test result should be footnoted to reflect the NACB and AACE recommendations. For example, said Garber, it could say: "Values between 2.5 and 4 are more likely to reflect early disease. Though intervention is not necessarily called for, it may be called for on an individual basis."
My ThoughtsMy experience, and the experience of my readers, tends to contradict Dr. Garber's vision of endocrinologists as being especially capable and willing to identify those in the high-normal TSH range who merit treatment. In the past, I have referred to endocrinologists, not entirely jokingly, as the "accountants of medicine," due to a tendency to overfocus on lab test reports to the exclusion of symptoms and clinical observation.
As thyroid patients, many of us have even adopted as our rallying cry, "We're patients...not lab values." But given that a GP or family practice doctor may not feel confident about diagnosing and treating borderline thyroid problems without fear of medical or legal repercussions, perhaps Dr. Garber is right that endocrinologists may be the next line of defense. At minimum, as specialists, they may feel their additional credentials give them license and authority to make those "close call" diagnoses that feel riskier to their colleagues in general practice.
Unfortunately, however, even with ramped up training programs for endocrinologists and what Dr. Garber referred to as "physician extenders," most of us are still limited to primary care, general practice and HMO doctors for thyroid diagnosis and treatment. And here, the lack of consensus standards, the need to interpret TSH levels, the perception that treatment of borderline thyroid patients is not medically advisable, and laboratories' failure to footnote or mention the new TSH reference ranges are all factors that do not serve patients well. By default, under these circumstances, patients with a TSH level above 2.5 are likely to remain undiagnosed and untreated. And given that as many as 45 million Americans fall into this group, this represents a large number of people who could potentially benefit from thyroid treatment and aren't likely to receive it.
What Can Patients Do?Ultimately, I feel there are three action points for patients to consider as we move forward.
1. Continuing Education.
I'm not seeing any evidence that we can safely sit back and assume that most doctors thoroughly understand the subtleties of hypothyroidism testing and diagnosis. In fact, given the disagreement among endocrinologists, and the lack of agreed-upon guidelines and lab ranges, there's even more need for patients to be knowledgeable about the lab ranges, informed about our own test results, and willing to discuss with practitioners their particular approach to diagnosis and treatment, and how it applies to our health. So my advice: keep reading, keep learning, and don't be afraid to ask as many questions as you need to in order to be sure you and your doctor are in agreement and working toward the same goal.