Thyroidectomy for Hashimoto’s?

One of the thorniest issues I deal with is hypothyroid patients who feel poorly despite “optimal” medical management. Nothing else within the field of Endocrinology consistently causes as much angst among patients and their physicians. I have already written extensively about this subject – check my “Thyroid” archive – but today I’m going to attack it from a totally different angle.

An astute reader (thanks, Mike!) brought this April 2019 Annals of Internal Medicine paper to my attention: “Thyroidectomy Versus Medical Management for Euthyroid Patients With Hashimoto Disease and Persisting Symptoms: A Randomized Trial.”  After reading the entire article, I can say that the study was quite straightforward and the title nicely encapsulates the investigators’ purpose.

The bottom line is that the subjects who underwent thyroidectomy felt significantly better – all the way through the end of the 18-month study – than the subjects who simply attempted to further optimize the medical management of their autoimmune hypothyroidism.  If a surgical approach to Hashimoto’s thyroiditis can cause the level of symptomatic improvement seen in this study, perhaps it should be added to the menu everywhere.  This is a huge game-changer, right?

As with most things that sound too good to be true, this study deserves a thorough examination before we get too excited.  Let’s quickly cover the most obvious criticism first: there was – almost certainly – a massive placebo effect in the surgical arm of the study.  Even though I applaud the authors for conducting this much-needed randomized trial, we can all agree that the subjects who underwent thyroidectomy were highly invested in the success of that procedure.  Nobody wants to go through the pain and stress of general anesthesia and an operation without believing that surgery is going to fix them.  These folks, just by nature of inclusion in this study, were already at the end of the road, seemingly without other options.

Even worse, the medical management arm didn’t have much of an intervention – they simply tweaked their thyroid hormone cocktails a bit if needed – and got nowhere.  For the sake of science, I would have loved to see that control group have a sham surgery (incision made in neck, but thyroid left intact), but I realize that’s wildly unethical and would never pass IRB (Institutional Review Board) -muster in a civilized country.  Pity that, as the findings would have been more impactful if the thyroidectomy group still did better than the sham group.

All that said, I am impressed that the clinical benefit in the intervention arm persisted all the way out to 18 months.  Most placebo effects will wane by 6 months, so I do think we need to seriously consider the possibility that the surgery had a real disease-modifying effect.  Therefore, I ask you again: should we be offering thyroidectomy to Hashimoto’s sufferers who are euthyroid (adequately replaced with thyroid hormone) on paper, but still feel like crap?

But These Are Norwegians

This is the point where I have something to add to the discussion, that I suspect has not been mentioned elsewhere on the internet (if it has, then mea culpa).

It is critical to recognize that the study was performed at a single secondary-care hospital in Norway. Given that 83% of Norway’s population is native Norwegian, I think it’s fair to assume that the majority of subjects were native Norwegians. Even if some immigrants were included, it is also reasonable to assume that some of them might identify culturally as Norwegian.

This is so important because Norway’s culture is very different from that of the United States (where the majority of my readers reside). In the ensuing paragraphs, I will argue that these cultural differences hamper our ability to broadly extrapolate the study’s findings.

Uh, HD? Since when did you become an expert in sociology?

I don’t profess expertise in sociology. I’m also not a psychologist, but practicing medicine makes me psychology-adjacent, so I hope I dispensed sound relationship advice in Your Loved One is Alternative Medicine-Obsessed: Now What? I don’t possess an MBA or MHA, but I offered plenty of opinions informed by my career in the American medical system in Doing the Impossible: Fixing Healthcare. Look, it’s possible to be a very good doctor by sticking to what you know and were strictly trained to do. But to be a great doctor – to really level up – you need to sniff out hidden variables that influence outcomes. That’s what I’m trying to do here.

We Versus Me

Deeply embedded in Norwegian and other Scandinavian cultures (i.e. Denmark, Sweden) is something called the Law of Jante. To summarize it, Scandinavians are raised to believe they are not special and the collective good is more important than the individual good. Many sociologists believe this ingrained mentality accounts for Scandinavian countries consistently topping the rankings of the world’s happiest countries. It certainly is intuitive, isn’t it? If your personal expectations from life are lower, then they are more likely to be met or exceeded. I don’t know who coined this formula, but I love it because it rings true: Happiness = Reality – Expectations.

Let’s contrast the Scandinavian mindset with the American mindset. In the United States, we are constantly bombarded by messaging telling us how special we are, from a very young age. While I do believe that internalizing this concept can do wonderful things for our self-esteem – which is clearly important – there is a fine line between building self-worth and cultivating a sense of entitlement.

Unfortunately, in our more-is-better American culture, I think too many of us have strayed into the realm of entitlement. Healthcare just happens to be rife with examples of this manifestation of entitlement; Americans believe that we deserve to be thin, happy, pain-free, and energetic. Based on my reading about Scandinavian culture, I suspect that Norwegians do not share this outlook.

Before you start banging out angry comments about my lack of empathy for those with chronic symptoms that have defied diagnosis or been inadequately addressed, I would ask you to push pause and breathe with that emotion while I explain. I do have tremendous empathy for those of you who feel unwell. However, having empathy for people while concomitantly recognizing that they can be their own worst enemies are not mutually exclusive states.

I cannot tell you how many patients I see who are utterly convinced they have tried “everything” to improve their symptoms. After I elicit a detailed history, however, their blind spots begin to appear. My blog is filled with posts that address these blind spots; the take-home message is that people are resistant to dealing with issues they believe either aren’t germane or have already been addressed. Sadly, things they dismiss as irrelevant aren’t (e.g. sleep quality and quantity) and things they’ve “addressed” haven’t been (e.g. diet).

Norwegians, Americans, and the Symptoms of Life

Bringing this back around to the study, there was something in it (besides the conclusion) that struck me as truly remarkable. Check out the graphs below and see if you can spot it:

Adapted from Guldvog et al, “Thyroidectomy Versus Medical Management for Euthyroid Patients with Hashimoto Disease and Persisting Symptoms: A Randomized Trial,” Annals of Internal Medicine, 2019; 170:453-64.

Do you see what I see? Look at the horizontal, shaded-gray bar that represents the Norwegian background population. Now look at the y-axis of each graph, which represents the SF-36 (health survey) score for each category. The best score you can get is 100; notice that healthy Norwegians tend to average around 80*. Can you guess what the average score is for healthy Americans? Around 50.

I suspect you know where I’m headed: I am speculating that Norwegians may be better acclimated to the “symptoms of life” than Americans. Perhaps Norwegians have lower expectations for what constitutes normal. Perhaps they are more stoic. Perhaps their relationship with symptoms like pain and fatigue is fundamentally different from ours. Perhaps they are simply healthier than Americans and have fewer symptoms. I don’t know – maybe it’s a combination of the above factors plus other things I haven’t considered.

This does raise the question of whether the authors’ results are generalizable to other populations. If this study was to be replicated in the United States, would the SF-36 health survey delta between healthy Americans and their Hashimoto’s counterparts be significantly smaller than the delta between healthy Norwegians and theirs? Would it therefore be less likely to see a statistically significant benefit in the surgical arm of the study? If thyroidectomized subjects did experience some symptomatic improvement, would the degree of improvement match their high expectations?

My point is, if there truly is a benefit of thyroidectomy for some euthyroid Hashimoto’s patients, I suspect that finding appropriate candidates for surgery in the U.S. will be significantly more challenging than in Norway. Americans considering surgery for Hashimoto’s would require a level of rigorous screening that is found mainly in organ transplant and astronaut-training programs. Without that degree of rigor, it is my opinion that most who go under the knife will come out the other side with the same constellation of nonspecific symptoms they had pre-surgically.

Worse, now that these folks can divide their lives into “before surgery” and “after surgery,” there will be a tendency to ascribe symptoms that predated the thyroidectomy to a consequence of said thyroidectomy. Think that sounds farfetched? I’ve seen it – over and over and over. I have patients who tell me that their symptoms started after surgery – any surgery – but when I look back at my past notes, they endorsed the same severity of the same symptoms. The end result of all this is patients who are even less satisfied than before surgery, as they perceive that their health declined after surgery and therefore regret ever choosing it.

Summary

I find that many of my posts end with you – the reader – asking a variation of the question you probably have after reading all of the above. If I feel like crap, tweaking my thyroid medications isn’t helping, and surgery isn’t the slam-dunk solution, what the heck am I supposed to do?

As I’ve said before, there is usually no easy answer to this situation – that’s why you’re still in it. The best advice I can give is to accept the fact that you have blind spots and be open to doing a deep dive into your diet, exercise, sleep, relationships, stress management, and mental health. And, it bears repeating that you must abandon the irrational hope that there’s one smoking gun to explain all your symptoms and one silver bullet to fix them.

*The authors did not specifically state where they got the SF-36 data for the background Norwegian population, but this paper appears to confirm their assertion.

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Image Credit: Photo by Mikita Karasiou on Unsplash

9 Replies to “Thyroidectomy for Hashimoto’s?”

  1. very interesting… esp as most of my genes are norwegian (pre-scotland). now to convince the nhs to crawl out of the dark ages – i’d be up for trying

  2. Thank you for the post. The people who participated in the study were not in great shape as measured by the SF-36, and they were willing to risk an invasive surgery.

    The other way of seeing this is that an even worse American (in terms of SF-36) should have more room to improve, and thus possibly achieve a larger effect.

    Surgery should be last recourse, anyway, but this implies that it could work for some. Any comment on the high TPO levels of the participants?

    1. The other way of seeing this is that an even worse American (in terms of SF-36) should have more room to improve, and thus possibly achieve a larger effect.

      This would be the optimist’s way to look at it, I suppose. But it requires assuming that the SF-36 for Americans with Hashimoto’s would be even lower than the score for the studied Norwegians, and that the Americans have the potential to reach a score significantly higher than the average for healthy Americans. I’m dubious.

      Any comment on the high TPO levels of the participants?

      Yes. I think the authors were smart to include people with antibody levels >= 10x the upper limit of normal (for this study, that is 1000 IU/mL or more). They were able to show a dramatic drop in the antibodies for those who had surgery, which is to be expected. Whether the antibodies have a direct pathophysiologic role in the symptoms of euthyroid Hashimoto’s is unknown. We have always been taught that they most likely do not, but the authors cite some data that suggests they do. The data out there is not super-convincing, but it is worth being aware of, at least.

  3. I have Hashimoto’s. Two years ago my endocrinologist advised that I should consider a thyroidectomy to relieve discomfort and mild swelling in the gland. I wonder if he had advance knowledge of this study. I left his office that day and never went back again thinking his suggestion sounded draconian, and also feeling a little peeved that he even went there. Since then I’ve wondered whether it’s possible for thyroidectomy patients to go on and lead normal happy lives on wholly synthetic hormones. Is it possible/common?
    p.s. I’ve since learned that indeed there were other causes for my symptoms and I’m so glad I didn’t consider surgery. Though I’m not 100-percent confident, the real culprits for me seem to be reflux and chronic rhinitis, not thyroid.

    1. Usually thyroidectomy is considered in cases of cancer or if someone is having trouble breathing due to pressure from goiter.

      Commonly people without a thyroid need some sort of combination therapy. Whether it be NDT or Synthetic T4 and Synthetic T3. This is even mentioned in the guidelines which Endocrinologists often refer to: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4267409/

      Personally I would treat the thyroidectomy as a last resort. Better to work on diet, exercise, sleep, stress reduction first. But if you have cancer or having real pressure on the throat then it could be considered. I’ve seen quite a few people regret having the surgery done because they are having trouble managing without a thyroid. But for some folks there is reason for it.

    2. It is definitely both common and possible for people to live normal, happy lives post thyroidectomy. But of course, there is a sizable minority that doesn’t do well, and that’s what can cause much consternation.

    3. My anecdotal answer is yes – I had a TT for Graves’ and I consider myself both normal and happy 😉 It did take about 6 months to find the right dose of thyroxine, so I felt a bit rubbish during that time but now I don’t think much is different from before the surgery – except I no longer have a fat neck and I don’t have to worry about the hyperthyroidism returning.

  4. Warning anecdotal comment.

    I have Hashimoto’s and have also needed to have a total thyroidectomy (diffuse goitre and a big inconclusive nodule) and neck dissection as there ended up being many nodules. They were all benign and caused by my disease. I was technically eurothyroid on my levothyroxine before surgery but my surgeon said I was slightly under medicated. Besides being easily fatigued, I was otherwise okay.

    In the UK, we don’t routinely see an endocrinologist for hypothyroidism but I will see one for the rest of my life. I have chronic post-surgical hypoparathyroidism and all the misery that entails. I do not feel better, I feel worse. We don’t have Natpara here and the hypocalcaemia has made me very poorly a few times.

    The complications of a thyroidectomy are often downplayed (“you might need to take calcium pills” etc. I could have had a hemi but was recommended the total (and considering my neck dissection was unplanned, I’d probably have had a total either way) because of my existing Hashimotos.

    I would hope people wouldn’t have a TT unless absolutely necessary. All surgery carries a risk and the complications can be life changing.

    1. Excellent point about postoperative hypoparathyroidism. It can occasionally be a real challenge to manage. I have a few patients who really like Natpara, though it is currently off-market because of an issue with the injection device.

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