Optimizing Thyroid Hormone Replacement after Surgery

 

 

I received the following request for a post via email:

I am about to get my thyroid removed in the next couple months for a growing multinodular goiter. I have had one indeterminate FNA but the rest, over about 5 years, have been benign. But it has been growing to about 6 cm on each side, and the chances of missing a malignancy grow as it gets bigger, and now both the endocrinologist and surgeon are recommending thyroidectomy.  [HD: The type of indeterminate cytopathology result is important here.  If it was “atypia of undetermined significance” or similar, followed by one or more benign biopsies of the same nodule, the risk of malignancy should be no more than 5-10%.  If it was a “follicular neoplasm” or “oncocytic neoplasm,” followed by benign biopsies of the same nodule, the risk of malignancy is higher, 20-30%.  The risk of malignancy can also be adjusted up or down depending on the presence/absence of suspicious ultrasonographic features.]
I like your blog because frankly, the Internet is scaring me about thyroid issues. I am an RN and my husband is a scientist, so I am science focused. My question is, do you have any recommendations on how to treat patients post-thyroidectomy so that they get their levels optimized quickly? I am 42 and I feel great, lots of energy, completely euthyroid now, and frankly I am very worried that I am throwing away my energy and making a big mistake. But I don’t see that I have any choice now with how the nodules have been growing.
Although treating postoperative hypothyroidism (thyroid removed) is mostly the same as treating primary hypothyroidism (thyroid slows or stops working), there are a few issues unique to the postsurgical patient.  The most important thing to know, however, is that most people do just fine after surgery on levothyroxine.
 
Beware the Post-Surgery Blues
 
I’ve had many patients come back to see me a couple of months after thyroidectomy, distraught over their “hypothyroid” symptoms. The whole situation is made worse by a sense of buyer’s remorse, particularly when the thyroid was removed for noncancerous reasons. I’ve listen to patients lament the loss of their thyroids, understandably wondering if they’ve made a huge mistake by allowing the surgeon to excise a gland that may have been bulky and uncomfortable, but was working just fine.
 
The sense of urgency that my patients feel transfers directly over to me, and I feel strong pressure to “fix it.” But if the postoperative TSH is comparable to the preoperative TSH, I am typically inclined to attribute symptoms like fatigue, weight gain, and mood changes to something other than uncontrolled hypothyroidism.
 
This is where the post-surgery blues may be playing a role. The challenging part about making this diagnosis is that it’s a diagnosis of exclusion. In other words, there are no objective tests for this problem, so we just need to rule out everything else. Upping the difficulty factor is that most people are programmed to believe that a temporal relationship implies a causal relationship – i.e. “My thyroid was just removed, so anything I’m feeling must be directly linked to its absence.” It can be extremely difficult to redirect this line of thought, in order to explore more likely culprits.
So, what to do? First, I need to review the chart. Did surgery go smoothly? Were there any complications that could have drained my patient’s energy (e.g. prolonged hypocalcemia)?  Is she anemic at baseline?  Did the anemia get worse due to surgical blood loss (uncommon in thyroid surgery)?  Is it possible that she had undiagnosed sleep apnea prior to surgery?  Perhaps her decreased activity level after surgery has led to weight gain, and that weight gain has unmasked the sleep apnea.
 
What else is going on in her life right now?  Has there been family or job-related stress that has been exacerbated by her postoperative downtime?  Has she ever been prone to bouts of depression in the past?
 
If we seem to be coming up empty with respect to any other plausible cause of her symptoms, we need to consider that this could be postoperative depression.  A discussion of why this happens is outside the scope of this piece, not to mention outside my area of expertise.  Just know that it can happen, even if you don’t consider yourself at risk for depression.  I think that recognizing this is more than half the battle, as you should feel reassured that it is most likely temporary and will pass soon.  In fact, knowing that there’s nothing seriously wrong with your hormonal status may even accelerate your recovery, as that’s one less thing about which to stress.  If your symptoms are moderate-severe, though, you may consider seeing your primary care provider or psychiatrist to get their take on whether anything else should be done.
Your TSH Target is Important
 
In patients without thyroid cancer, the postoperative TSH target is going to be the same as the preoperative TSH.  In thyroid cancer, however, the TSH target is often going to be lower – how low depends on the extent of disease.  The trouble with TSH suppression therapy – which can slow the growth of residual disease and reduce the risk of recurrence – is that it requires supraphysiologic doses of levothyroxine.
 
While many people will feel fine with these higher doses of levothyroxine, some will not.  And remember, the symptoms of too much thyroid hormone overlap significantly with the symptoms of too little thyroid hormone.  Both overlap with the symptoms of depression, which brings us back full circle.  We therefore need to balance our aims of decreasing cancer recurrence, minimizing symptoms of “over-suppression,” and making sure that we’re not missing something else, like postoperative depression.
 
I have had patients with thyroid cancer who needed to have their doses of levothyroxine decreased because of fatigue, weakness, insomnia, etc.  In those cases, if their symptoms did not get any better once the TSH normalized, then I increased the dose back to a level sufficient for cancer suppression, and we began looking for other causes of their symptoms.  On the other hand, if symptoms improved on the lower dose, then we discussed the balancing act of cancer suppression versus feeling well, and I let the patient make an informed decision about how to proceed.
 
The T3 Controversy
 
As I’ve previously written, most hypothyroid patients will fare no better with the addition of T3 to their regimen.  However, the occasional thyroidectomized person may be in that small subset of people who benefit from taking T3.  Remember that the thyroid makes some T3, while the rest is produced through conversion of T4 (remember that levothyroxine is T4) to T3 in your tissues.  Once the thyroid is removed, you are entirely dependent on peripheral conversion of T4 to T3.
 
What if your conversion is impaired?  Mind you, I’m not talking about pseudoscientific, widely discredited diagnoses like Wilson’s (Low T3) Syndrome.  I’m referring to people who actually have a genetic polymorphism of one of the enzymes that converts T4 to T3; that has the potential to affect circulating and tissue T3 levels.  This topic is explored nicely in Section 13a of Guidelines for the Treatment of Hypothyroidism: Prepared by the American Thyroid Association Task Force on Thyroid Hormone Replacement.
 
Note that I am not saying that non-hypothyroid people who are heterozygous or homozygous for these polymorphisms can now be diagnosed with hypothyroidism.  The research to date on these polymorphisms would suggest that the changes in circulating levels of thyroid hormones in otherwise normal people are subtle, and the clinical significance is probably minimal to zero.
 
What I am saying is, a person who loses her thyroid and has one of these polymorphisms may not respond optimally to standard levothyroxine therapy.  As we do not have the ability to test for these polymorphisms in routine clinical settings, doctors should recognize that some postsurgical patients might do better with slightly higher than normal doses of levothyroxine or with the addition of liothyronine to levothyroxine.  The most recent study I’ve read on this subject (it was a good study) can be found here.
 
Summary
 
Hopefully it’s comforting to know that most people will feel just fine on levothyroxine alone after a total thyroidectomy.  There is no magic to getting the dose right and regulated quickly; beginning the medication after surgery at a dose of 1.6 mcg/kg is usually a good place to start (1.7 mcg/kg if cancerous).  If you feel relatively okay during the weeks after surgery, then checking a TSH about 6 weeks later is a good idea, so that a dose adjustment can be made if necessary.  If you feel very poorly in the weeks after surgery, then a TSH and FT4 (free T4) should be checked at that time, as it’s possible that the dose may be much too high or low, in which case the blood work may be helpful.
 
Do you take thyroid hormone for postoperative hypothyroidism?  Has your experience been smooth or not?  If you’re a doctor, what is your impression of how people do after thyroidectomy on T4 alone?  Comment below!
 
 By reading this site and interacting with me in the Comments, you agree that you have read and will abide by my Disclaimer.

11 Replies to “Optimizing Thyroid Hormone Replacement after Surgery”

  1. I think you’ve really hit on something with “post-surgical blues.” I have not had a thyroidectomy, but think I experienced post-diagnosis blues. It was very hard for me to accept the fact that I would be taking medication for the rest of my life and that I had a disease (Hashimoto’s) that wouldn’t go away, even though it is very treatable. In addition, I didn’t understand the diagnostic process. Instead of seeing my GP at the center, referring me to specialists to rule out various things, then re-evaluating once they were ruled out, I saw myself as being shuttled from doctor to doctor without result. Not that I was getting no results– “It’s not cancer” and “You don’t have rheumatoid arthritis” are answers– but it can be very demoralizing to spend a few months knowing something is wrong, but not finding out what. The way appointments work didn’t help– getting no phone call because the lab results didn’t show anything is really demoralizing when you’re sitting at home, feeling very bad, and don’t know what to do next. I felt like I was bothering my doctor and that she thought I was just weak (or crazy) for continuing to come back. All this made me ripe for the plucking by the alt-thyroid community, with their tales of diet-related cures and “amazing energy” and compassionate naturopaths with rapid testing!

    In the end, a rheumatologist found I had a serious vitamin D deficiency in spite of supplementation, and resolving that got rid of my continuing fatigue and pain. But I definitely felt like the months of diagnostic process brought me down, and it’s still never a great thought to know you have a disease. I imagine knowing you don’t have a thyroid is similar.

    1. “All this made me ripe for the plucking by the alt-thyroid community, with their tales of diet-related cures and “amazing energy” and compassionate naturopaths with rapid testing!”

      Sadie, you have eloquently described the shortcomings of what I would call the “process of medicine.” Some of what you experienced was out of the doctors’ control (negative testing leading to more uncertainty), while other facets of your experience could have gone smoother (more compassionate and attentive followup care from your doc). I can see how this made you susceptible to the claims of the alt-thyroid community.

  2. Thank you for answering my email! I believe that my chance of malignancy is the one in the 5-10% range. Part of my anxiety about having the surgery is the question as to whether I truly do need it. I even had the molecular test about a year and 9 months ago, and it showed benign. However both sides of my thyroid grew about 3mm in the last year. My sister had her thyroid out, both sides separately, said she had cancer, but I’ve never been able to confirm that. My endocrinologist is nervous. She said it’s so big that there’s no point in continuing to do FNA since she could be missing the malignancy. She said I have concerning u/s characteristics but won’t say which. And now my general surgeon agrees with her that it’s probably best to get it out.
    Thanks for the guidelines and for taking the time to help.

  3. Thanks for the post, this is really interesting, I wish this article had been available when I underwent treatment, I would have a better understanding of evidence and I would have been more ready to have a discussion with my doctors.

    My endo suspected I may have one of those polymorphisms and was raising my dose because of this, whereas radiation oncologist was against the idea because of hyperthyroidism risk. I ended up going with endo’s approach (I was also simultaneously being treated for another endocrinology issue, so I wasn’t exactly doctor-shopping), she tried a lot more to tinker with the exact dose that might be perfect for me, which I appreciated, instead of just letting me feel poorly and wait for months until the next appointment. Maybe this partially explains why it was so tough for me after the surgery? I also suspect I had a depression episode, but I suppose they are not mutually exclusive.

    Thinking about this issue, I remember one more unclear thing – the issue of generics. What is your opinion about the use of generics in thyroidectomized people? My doctor suggested changing my L-Tyroxin to a brand name Euthyrox prescription, saying that it is possible that bioavailability is slightly different among different prescriptions. However, since other placebo approaches (selenium) were used with me, I’m not sure which of the arguments were actually legitimate.

  4. Generic levothyroxine and branded preparations of levothyroxine (e.g. Synthroid or Levoxyl in the U.S.) are pretty much the same stuff, and should work equally well in most hypothyroid people, regardless of the cause of the hypothyroidism.

    That said, the dose equivalence across manufacturers is not perfect, so 100 mcg of generic levothyroxine from Company A does not necessarily have the same amount of active ingredient as 100 mcg of generic levothyroxine from Company B, which does not necessarily have the same amount as 100 mcg of Synthroid.

    The problem usually is that pharmacies will give you generics from different manufacturers, depending on which manufacturer they are contracting with at that time. So if your 100 mcg pill was doing fine for you, and then you get switched to a different manufacturer’s version of that 100 mcg pill (which you’d know because the pill would be a different shape or color), then it is possible you could be getting a little more or less than 100 mcg. For many people, that doesn’t matter, but for some, they will feel off.

    To get around this issue, we sometimes prescribe brand name only, so that the patient knows she/he is getting exactly 100 mcg every month. In the U.S., brands have become much more expensive than generics, though, which limits our ability to do this.

  5. Just found this blog — your article re: “5 reasons your doctor is quitting” is spot on.
    I am a physician who found her thyroid cancer while learning the physical exam in medical school. I was treated with total thyroidectomy followed by RAI — overkill for the extent of my disease now, but standard of care 25 years ago.
    My post-op year was not pretty. I was unaware of the polymorphisms, but after failing high dose synthroid, I suggested to my endocrinologist, (who was suggesting that I was not taking my medication int he face of a rising TSH on high dose synthroid), that I might need liothyronine with my levothyroxine because I might not be “converting”…..I took the combination for 6 weeks until I developed migrainous headaches. I then stopped the liothyronine and did well on high dose levothyroxine (suppressed TSH, normal indices). Interestingly over the past 25 years, that dose of levothyroxine has been slowly decreased, but I still take more than normal. Menopause is decreasing my requirements.
    For me, life pre- and post-thyroidectomy is not the same. I am a jogger. At the time of my thyroidectomy I was running 5-6 miles/day. I was told to hold off exercise until after the RAI. Once I got back to running 6 weeks later, it took 3 years to get back to 4 miles, and I have had more difficulties with endurance post thyroidectomy. The kicker: I have not had a single runner’s high post- thyroidectomy. None of this is a deal breaker . I run for stress reduction and sanity. Those benefits are still present. I do miss the wonderful release of endorphins after a good, long run, though.
    In my mind, it “is what it is.” However, I believe I nearly failed my endocrinology rotation in training by trying to explain to my attending that life is not always the same post thyroidectomy. As a scientist, it makes sense to me that the thyroid gland that has real time regulation via our brains might not be exactly compensated for by taking a pill a day. In the end, life IS good….just different (and lacking in runner’s highs) post total thyroidectomy.

    1. Thanks for sharing that, Celeste. You have a good attitude about it, proving that things work out best for those who make the best of the way things work out.

  6. I wanted to follow up and thank you again for allaying my concerns. I had my total thyroidectomy on August 17. My pathology report came back, unsurprisingly, benign. It’s ok, though. Benign is always better. My thyroid was going to continue to be an issue in my life every year as it grew bigger and bigger, and now at least that uncertainty is in the past. I am recovering very well. My energy is back to normal a week later, and the only after-effects from the surgery is the incision healing. I am taking generic levothyroxine at the 1.6mcg/kg dosage (so 112mcg was about right for my weight) every morning, and they did give me one the same night of my surgery, perhaps so that I would not have any gap at all in my hormone levels. I feel great. They will take my TSH level at the beginning of October, and we are aiming for about 1, which is close to my pre-op TSH level.
    Thank you!

  7. About six weeks after surgery, I feel great. But my TSH is 5! (A year ago, it was 1.) I’m curious about what my endocrinologist will say. This is not an outcome I anticipated.
    Any thoughts?

    1. Feeling great is usually the most important thing. It is possible that your body is just not that sensitive to minor differences in thyroid hormone levels, as is the case with many people (there are more people who don’t feel the difference between 1 and 5 than there are people who can tell when they are 1.5 vs 0.8). If that is true, consider yourself fortunate! Nonetheless, your doc may recommend “optimizing” your TSH (or not).

Leave a Reply

Your email address will not be published. Required fields are marked *