I have been concerned about total TSH suppression for a while now. There are pros and cons to be considered because every patient is different. Even if we have the same type of thyroid cancer ( there are at least five types) there are multiple stages, unique situations, there are a wide variety of physicians who have their own treatment plans for thyroid cancer , and of course, most importantly, we are individuals- and have our own personal story.
My personal story is as follows. I was diagnosed with papillary thyroid cancer, with follicular variant, stage three. My surgeon removed my entire thyroid, two parathyroid glands ( they were also cancerous, which is not common I was told), along with eleven lymph nodes. A few months after my surgery, I had a large dose( 155 milicuries) of the radioactive Iodine, AKA, I-131 or RAI. I had elevated thyroglobulin levels for almost four years. Thyroglobulin is sort of a thyroid cancer marker, you might say. Only thyroid cells make this, and if you do not have a thyroid gland, and have thyroglobulin present in your body, one can assume that you still have some thyroid cancer cells lurking around somewhere. My endocrinologist chose not to order up another dose of the I-131 to try to get my thyroglobulins down. I am thankful for this decision, because the I-131 damaged my salivary glands somewhat. I had large salivary stones about a year after the I-131 dose. I still have soreness, and occasionally some swelling in my jaw area. I have been able to control the symptoms, at least so far, with sour lemonade, warm compresses and ibuprofen for the pain and inflammation.
What my endocrinologist decided to do, and I am still on this schedule for now, is to order ultrasounds, blood work and office visits every six months. In May of this year, I will be a nine year thyroid cancer survivor. So, my thyroglobulin levels are acceptably low now( less than 0.1ng/ml- for those of you who would like to know.) I have had my TSH completely suppressed now for nine years. Complete suppression of TSH has been the gold standard of practice for thyroid cancer patients with stage three or four thyroid cancer, or those with persistent, or distant metastatic disease. My levels as of August, 2018 were as follows: T4( free): 2.12 ( range = 0.82- 1.77 mg/dl) and TSH: < 0.006u Iu/ml ( range = 0.45 to 4.5)
According to the American Thyroid Association Guidelines( 2009) of TSH suppression, and I quote:
**Initial management of TSH:
*For high risk and intermediate risk patients, TSH is recommended to be below 0.1
*For low risk patients, TSH is recommended to be slightly below the lower limit of normal- 0.1 to 0.5
** Long term management of TSH:
*For patients with persistent disease, the serum TSH should be maintained below 0.1 indefinitely in the absence of specific contraindications.
*In patients who are clinically and biochemically free of disease but who presented with high risk disease, consideration should be given to maintaining TSH levels of 0.1 to 0.5 for 5 to 10 years.
*In patients free of disease, especially those at low risk for recurrence, the serum TSH may be kept within the low normal range ( 0.3 to 2)
So that is basically the outline of the pros of TSH suppression. Suppress the TSH, and keep the thyroglobulin cells, if there are any remaining after surgery and treatment with the I-131, dormant. This suppression of TSH technically should prevent the thyroid cancer from recurring.
And, here, folks, are the very serious cons of total TSH suppression. In an article, " No advantage for Aggressive TSH Suppression for Thyroid Cancer, Medscape- November 3, 2014".There were some interesting facts from a study of around 5,000 thyroid cancer patients over a period of about six years. According to Dr.Aubrey Carhill( University of Texas MD Anderson Cancer Center, Houston) , "Aggressive TSH suppression confers no additional survival advantage as compared with moderate suppression in differentiated thyroid cancer- even when limiting the analysis to patients with distant metastatic disease, which remains particularly relevant given the risks associated with long-term thyrotoxicosis."
Let me break that mouth full of info down a little. Dr.Carhill went on to say that " aggressive TSH suppression leads to worse survival than moderate suppression." Why? The complications of keeping the TSH suppressed, especially for long periods of time, include osteoporosis and atrial fibrillation. Personally, I have not had any heart issues, that I am aware of, but my bone density test last time ( in August, 2018) went from a +0.3 to a-1.2. That means that I am not in full blown osteoporosis, but I now have osteopenia. Osteopenia is sort of half way between having healthy bones, and having osteoporosis. I am losing old bone faster than I am making new bone. My bones are weaker than they once were, but not brittle enough to break easily- as they could with osteoporosis.
This is off topic, but I know that some people are debating the issue of having the I-131 treatment after surgery. There is the possibility of salivary gland issues. There are some who think that I-131 may lead to other cancers. Dr. Cahill states that " RAI did continue to remain as an independent predictor of survival in stage three thyroid cancer patients. In stage four patients, thyroidectomy with RAI continued to show improvement in overall survival." As with any other treatment decision, the decision to have the RAI or not, depends on the patient, the treatment plan of the physician, and the particulars of the type and stage of the thyroid cancer.
Those of us who have had thyroid cancer take a thyroid replacement hormone drug so that we will not be hypothyroid, or have a recurrence of our thyroid cancer. The dose is the slippery slope in this equation. One needs a dose of thyroid replacement hormone ( T4 or T4 + T3) large enough to suppress TSH or keep it in the low normal, or perhaps even in the normal range- depending on what type of thyroid cancer one had and the staging. The new treatment for thyroid cancer patients, with the possible exceptions of those who have persistent disease, is to not totally suppress the TSH- when talking about long term management of the disease. Long term TSH suppression can cause serious problems with our bones and/or heart function. Every thyroid cancer patient should be their own best patient advocate. Know your test numbers! At the very least, know your TSH, Free T4 and T3. Choose a physician who is experienced in working with thyroid cancer patients, and is willing to come up with a treatment plan that will be best for you.
And since this is a case study about me, I will tell you that I am now taking a reduced dose of my thyroid hormone. My next blood work and appointment with my endocrinologist is coming up mid- February. I have been in remission for a few years now, after my thyroglobulin numbers came down to near normal. I have not had any cardiac issues, but I am trying to avoid full blown osteoporosis, which can be serious. Am I nervous about reducing my dose? ABSOLUTELY! But I know that my physician will continue to do blood work, and ultrasounds when needed, so if I should have a recurrence of my thyroid cancer, hopefully there will be time to do something about it. I am doing my part,too, by keeping copies of my blood work and tests.
This is my case study. What is best for me, might not be best for others. Find a good physician, know your numbers, and do all of the research ( from reputable web sites or books) that you can so that you might work with your physician to come up with your own best treatment plan.
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