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.
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
20 Replies to “Thyroidectomy for Hashimoto’s?”
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
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?
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.
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.
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.
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.
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.
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.
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.
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.
I have a theory of what is actually going on with this situation (based on studies). When you are in the early/middle stages of Hashimotos, thyroid destruction is going on. This destruction causes fluctuating thyroid levels up and down which can be frustrating for dosing. That can make it “appear” that it’s a difficult situation or as they call it “persistant symptoms” despite euthyroid. However, when you are in end stage hashimotos and there isn’t much thyroid left, things settle down and become more steady. If you take the thyroid out, a similar situation occurs. Does this mean you should take your thyroid out? I say no because having no thyroid also makes it tricky to manage for many people. People without their thyroid often need combination T4 and T3 medication. And finding the right doses of this can be difficult. Especially because TSH is not as useful with combination therapy (usually it gets fairly suppressed). And most doctors only go by TSH which causes patients to be under dosed on combination therapy. For HD; do endocrinologists discuss combination therapy (Levo and Cytomel) dosing when they get together at forums? I don’t believe many have experience with it and it’s quite a different animal from T4 only dosing. While I’m not on combination (partly because of my worry about my doctor dosing it, and I want to give T4 every chance I can first), people I interact with on it (many without their thyroid) state that they go by the free T4 and free T3 for dosing and TSH often is supressed. Not allowing either free levels to go too high or low. Often shooting for FT4 and FT3 to be 1/2-3/4 range each.
The people I see who advocate for T4 and T3 combined therapy often try and have T3 in the upper 1/4 of the range, which I believe contributes to some of the continued symptoms. I wonder if they don’t feel any different on the lower doses, but get that stimulant effect when T3 is higher.
Personally (Graves without a thyroid not Hashis) I am on a combination (150mcg T4 + 10mcg T3) because I wanted to experiment and see for myself what it was all about. Honestly I’m not sure I can notice the difference at this dose. My T3 levels haven’t really even increased and I’m reluctant to have the dose pushed up until they do.
It’s an interesting theory and I suppose possible. However, one thing arguing against it is that many people with persistent symptoms are biochemically euthyroid the whole time. But perhaps your theory applies to a subset of people with hypothyroidism.
As for post surgical patients “often” needing combination therapy, I’d say it’s more like “sometimes.”
As for using T4 or T3 levels to guide dosing, that just doesn’t make sense, for all the reasons I’ve stated in other posts. Targeting those levels to mid or upper normal completely ignores the fact that many people will have a set point in a lower portion of the range. If the TSH is suppressed, it almost certainly indicates that the person has exceeded their set point.
I suspect from trolling around thyroid forums for a few years that it’s more complicated than just using TSH. Especially when on combination therapy. Often people have trouble with TSH only doctors leading to articles like this: https://thyroidpatients.ca/2020/01/21/7-ways-to-raise-tsh-without-reducing-thyroid-dose/
Many of these folks have been doing this for 20+ years and prior to this were having trouble going by TSH for dosing. Again, this is combination therapy and is a different animal from T4 only.
This study is very interesting and may shed some light on the situation:
Mike, there’s a lot to unpack in that first link you provided. I think this conversation would be better suited for: Is TSH the Best Test?. You are welcome to repost the first link there if you like. It will take me quite some time to sort through everything in that “Ways to Raise TSH…” post. At first read-through, I can say that I am impressed by how it is thoughtfully cited and written.
Some of the claims in there are fairly weak/not that relevant (e.g. sure, mega-dose biotin can lower TSH, but most Endos I know tell their patients to abstain from biotin supplements for 1-2 days prior to testing), while some of the other claims deserve a thorough investigation of the source material cited before I comment further.
The other link is just another study that doesn’t make any great breakthroughs in the epic “T3 or not T3” debate.
I believe the Thyroid Patients Canada is one of the better sites because it focuses on evidence based analysis vice what many thyroid sites do. It’s not alternative medicine from what I can tell. It’s obviously not pro doctors, but I do believe it’s mission is for thyroid patient advocacy, which is needed from my experience. I think it’s a good group to consider collaborating with in order to bring Endos and Thyroid patients together. Something that’s desperately needed from what I’ve seen over the past two years.
I believe you are likely a decent Endo, but there are many who appear to lack in the treatment of hypothyroidism and Hashimotos. I’ve also found many are not very personable. Many patients cry when leaving the office in desperate need of help. One thing I see in your posts that was mostly missing from my treatment (two PCPs and 5 Endos) was suggestions for other factors that are key to the success of thyroid hormone replacement (and the issue itself). Exercise, diet, stress reduction, sleep apnea, anemia, sleep etc. In fact, just recently I realized my low/poor Iron levels was likely the reason I had so many issue initially on Levo. Which led to a long path toward getting optimal. I personally believe my doctors should have found this looking at my CBCs and Iron labs.
I was wondering the same based on personal experience. At the start I would have probably accepted surgery had it been offered to me. The authors did not present data on time from diagnosis or something else that could be used as a proxy of disease progression, which is hard to measure accurately as it depends on diagnosis. Their TSH was well controlled (1.7 and 1.3) and over 90% in both groups were receiving treatment (very few in either combination T4/T3 or Armour, incidentally).
The only clue in favor of the theory that some were in early stages is that the average levothyroxine dose was 70 (they don’t specify units but assuming it’s the standard mcg). There is no information on weight, only BMI of around 25 (normal). Noregians are relatively tall. 70 mcg is low for full replacement.
Then again, don’t know if there is any evidence that symptoms are worse if the thyroid is still functioning.
The only thing for certain is that these people had very high anti-TPO levels and about 25% had another autoimmune disease.
This is a good point. Under-replacement could be mistaken for struggling with the general disease. Under-replacement can be common if all the doctor is looking for is “in range” TSH. The window of correct dosage is small and I believe a lot of patients are likely under-treated.
HD, would you consider symptom elimination a good way to find the correct TSH for the individual (assuming T4 only replacement)? I was thinking of this as my TSH has trended lower recently and I’ve eliminated quite a few symptoms. One Endo I had didn’t want to up my medications despite my TSH near 5 and a ton of symptoms. Now with my TSH at 2 and most symptoms either way less or gone, I was thinking maybe just paying attention to symptoms would be a good goal (of course with a reasonable TSH). While it’s true other issues could contribute to similar symptoms, it seems like it’s worth a trial. I do believe, based on many studies, less than 2.5 and closer to 1 is where most people feel better. Then if you started to get symptoms of too much hormone (tremors, anxiety, diarrhea, increase heart rate, night sweats, etc) you would know you went too far.
Assuming I can eliminate symptoms by moving the TSH around the normal range, the answer to your question is yes. If a patient feels better with a TSH of 1-2 as opposed to 3-4, I’m happy to bump the T4 dose to get there.
The problem, of course, is when we adjust the T4 dose to move the TSH all over the range, yet the patient feels no better. That’s when I wonder whether there is something else going on, or whether we need to try T3 add-on therapy if there is nothing else to account for the symptoms.
Your description of the We vs Me mentality neatly wraps up so many thoughts that I have been having regarding alternative medicine and “wellness” in general. I have seen what you describe relating to back pain and microdiscectomy, and I am sure there are countless other scenarios where these ideas apply.
Thank you for summarizing the issue so tactfully and well. Thank you also for your work in this blog.