How Success in Treating Thyroid Patients Should be Measured

I wrote about this in 2011, in Chapter 30 of the Recovering with T3 book. I made the point that, how endocrinologists and doctors are measured on their skill with thyroid patient treatment, needs to be revised. How they assess their own success and how they are assessed by their peers and managers, needs to be radically overhauled.

I have always thought that it was critically important that doctors should be primarily measuring their own success on something more important than getting TSH or other thyroid labs into the ‘right’ range. Now, it is even more important, as we seem to have moved further away from a patient-focused approach.

Having proper measures of success in place always motivates individuals to improve those measures.

This article is about how doctors and endocrinologists measure their own success when treating thyroid patients, and how they are assessed by their peers and managers.

Currently, family doctors and endocrinologists appear to be satisfied that they have successfully treated the hypothyroid patient when thyroid blood test results conform to certain ranges. This appears to be the main way in which doctors assess if they have treated the patient adequately.

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, TSH is often 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. FT3 is the only thyroid lab test result that is linked to symptom improvement but this is increasingly ignored by medical professionals.

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. The level of dissatisfaction with thyroid treatment should motivate those that manage the process of thyroid treatment to consider a change for the better.

People in other 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 that 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 assessments 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 the health care of a thyroid patient? Surely our health is as important as education, law, and engineering? Why cannot the health of thyroid patients be taken as seriously as the ‘customers’ of other professionals?

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 – this urgently needs to change.

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 other co-morbidity (other conditions causing the symptoms). Often these ‘other conditions’ are not investigated to show if they exist or not. Sometimes, the poor thyroid patient may simply be told that they are getting older or need to exercise more!

The current approach that focuses almost entirely on laboratory test results is simply NOT GOOD ENOUGH.

Doctors and endocrinologists need to measure their success in treating a patient by how the patient’s symptoms improve. If the patient genuinely feels they are better this is what counts.

Changing how the success of thyroid hormone replacement is measured, to explicitly include what a thyroid patient most cares about, i.e. how well they feel, is a profoundly important change. It would alter the process of thyroid treatment, and the relationship between doctor and patient – for the BETTER!

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/assessed 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.

Why is not 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 still present, 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/Endocrinologists need to be looking at how a patient actually improves (or does not) in terms of symptoms. Thyroid labs are not enough. Pointing at the possibilities of other co-morbidities (other contributing conditions) without identifying them explicitly and putting treatments in place for them, it not good enough.

Being labelled as Chronic Fatigue, or ME, or just old, 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 their patients well or extending their life. They are not measured simply on laboratory test results. 

This is not rocket science. It is just common sense. If there is to be an 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 professionals 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.

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. They would also need to keep up to date with important research findings and adapt their approach accordingly. Treatment would improve. More thyroid patients would get better and live healthy and happy lives!

I think a big change needs to happen in the way the success of endocrinologists and doctors is measured. Focus on the improvement in thyroid patients’ symptoms is critical.

Best wishes,

Paul

Paul Robinson

Paul Robinson is a British author and thyroid patient advocate. The focus of his books and work is on helping patients recover from hypothyroidism. Paul has accumulated a wealth of knowledge on thyroid and adrenal dysfunction and their treatment. His three books cover all of this.

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