How Success in Treating Thyroid Patients Should be Measured
I wrote about this first in 2011 when the 'Recovering with T3' book was first released. I thought it was an insightful idea then. Now it is even more important, as we seem to have moved further away from a patient-focused approach.
This short article is about how doctors and endocrinologists measure their own success and how they are assessed by their peers and bosses.
Currently, family doctors and endocrinologists are satisfied that they have successfully treated the hypothyroid patient when thyroid blood test results conform to certain rules that appear to be applied very rigidly. They do not like to see a suppressed TSH, even though there is research that clearly shows a suppressed TSH is not an issue for a patient on T4/Levothyroxine therapy, as long as the patient has no evidence of being hyperthyroid and FT3 is not over the top of the reference range. They are also perfectly happy if FT3 and FT4 sit somewhere in the middle of the reference range. In fact, often, TSH is the only thing that is measured. Sometimes TSH and FT4 are measured. Increasingly, FT3 is not tested at all, even though research has shown that it is the only thyroid lab that rises as symptoms improve, i.e. symptom improvement is linked to getting FT3 higher. We know from research that TSH and FT4 do not correlate to symptom improvement, yet they are usually the only ones tested. Thyroid laboratory tests appear to be the prime focus of most family doctors and endocrinologists and they often pronounce the patient adequately treated even if the poor patient is still very symptomatic.
As long as the above situation continues no substantial change for the better will occur. In particular, it should no longer be acceptable to believe that thyroid replacement treatment has been a success just because thyroid blood test results are 'normal', i.e. sit somewhere within a reference range.
People in all professions re-orient themselves and work differently depending on the measures that are used to determine whether they are successful or not. In my previous professional life I was measured using various criteria, which included whether a certain new technology worked according to its design specification, and also whether it was produced in time for a customer to use. Doing one of these on its own but not the other would have been deemed a failure. Lawyers are ultimately assessed on whether they get good levels of acquittals or convictions. Heart surgeons are judged on their % of successful surgeries and survival rates. Teachers have yearly assessment and schools are assessed on their actual examination results. Why are the people involved in treating hypothyroidism not measured? Why should the quality of health care of a thyroid patient not be tracked properly? What would it mean to track the success of health care of a thyroid patient? Surely our health is as important as education, law and engineering?
At present a doctor can feel satisfied if thyroid blood test results are normalised according to certain criteria. However, we know that thyroid blood test results are not sufficient on their own. The normalisation of TSH or any other thyroid lab may have nothing at all to do with whether the patient recovers their health.
Doctors need to begin to measure the progress of the treatment mostly in terms of improvements in symptoms and other useful signs that actually reflect how the patient feels. If the patient does not feel better, the treatment is not working well enough, regardless of thyroid labs. Thyroid labs should not be the most important focus. Symptom improvement is not the paramount focus for most doctors treating thyroid patients. If the thyroid patient's lab test values are brought into the reference ranges any remaining symptoms are frequently written off as, "It must be some other condition now!", "You have Chronic Fatigue Syndrome!", or in medical-speak, there is some co-morbidity (other condition causing the symptoms). That approach to believe the labs and not the symptoms is simply NOT GOOD ENOUGH.
Changing how the success of thyroid hormone replacement is measured, to explicitly include what a patient most cares about, i.e. how well they feel, is a profoundly important change and it would alter the focus of treatment, and the relationship between doctor and patient.
I honestly believe that this needs to be incorporated into medical training of doctors involved in treating thyroid problems. I also believe that over time, it would improve the quality of care and treatments offered to thyroid patients. If T4 (levothyroxine/synthroid) replacement therapy fails, a focus on symptoms and signs would enable the patient and the doctor to have a common understanding that this has occurred. The doctor would feel at a deeper level that the treatment has not been successful and would be more likely to continue to explore how to fix this. These measures should become part of how the doctor assesses his or her own ability to treat patients. A focus on symptoms and signs would be a potent tool.
This assessment of the success of thyroid treatment could be more formalised. Just look at the school system as an example. In the UK, schools and individual teachers are rated in various ways. Most schools have a system where each teacher is rated/assess each year based on exam results of classes they have taught and through observation. Schools and individual teachers are assessed even more formally every four or five years by external assessors during what is known as the Ofsted (Office for Standards in Education) process. Education is obviously critically important. But why isn't health also critically important? I honestly think the paramount measure of success of thyroid treatment is symptom relief for the patient. This could be tracked quite easily and it has to be assessed with the patient being the primary judge of whether the symptoms are present still, better, worse or completely gone. This is possible.
Thyroid patients need a new assessment scheme (other than thyroid labs) that properly represents how they feel and are responding to treatment. Doctors/Endos need to be looking at how a patient actually improves (or does not) in terms of symptioms. Thyroid labs are not enough. Pointing at the possibilities of other co-morbilities (other contributing conditions) without identifying them explicity and putting treatments in place for them, it not good enough. Being labelled as Chronic Fatigue or other things is not sufficient. Symptom improvement is the most important thing when treating thyroid patients. Specialists who are treating heart or cancer patients are viewed on their success rate with getting these people well or extending their life - they are not measured on some lab test measures.
This is not rocket science by any means - it is just common sense. If there is to be improvement in the quality of care of thyroid patients I believe that placing patient symptom relief at the forefront of the focus of the medical professions is an essential step. I am sure a simple scheme focusing on a minimum set of the most common hypothyroid symptoms and rating them could be developed. The score could then be tracked and progress could be measured. This assessment could be graphed in the patient's medical records. It is feasible.
The current situation, where thyroid labs are paramount (often just TSH), and T4 medication is believed to be all that is ever needed, would be exposed quickly, as the ludicrous sham that it is, if all doctors treating hypothyroidism were assessed on their patient symptoms/health improvement.
This change needs to be a central part of the new paradigm for thyroid treatment for all thyroid patients. if the change happened, a great many doctors would soon realise that they need access to all the thyroid treatments (T4, T4/T3, NDT and T3-Only), in order to make their patients recover - it would be a game changer! They would not be measured as successful with some patients if they only had access to T4 medication.
I think a big change needs to happen. Focus on the improvement in thyroid patients symptoms is critical.