On February 13th, I will be having my big six month thyroid cancer check up. I know that I do not have to tell a thyroid cancer survivor how stressful " testing time" can be. The fact that most people, those who have not had thyroid cancer, do not realize, is that thyroid cancer testing is a life long adventure, so to speak. There is no " five years and done" happy dance. There can be a recurrence of thyroid cancer many years down the road from the initial diagnosis.
In my last blog, I talked about TSH suppression- the pros and cons. As I pointed out in that blog, as far as how long to keep the TSH suppressed is a slippery slope. Many factors come into play- the type and staging of the thyroid cancer, how aggressive the cancer is, and what other health issues the patient might have( examples: heart disease and osteoporosis, being the main concerns). My TSH has been suppressed for about 8 and 1/2 years. My thyroglobulins were elevated for about 4 years. My cancer, papillary with follicular variant, was rather aggressive, and stage three. My endocrinologist talked with me during our last visit and stated that it was probably time to let my TSH return to a perhaps, low normal number.
That discussion with my endocrinologist sent me into a tail spin for a while. It sort of made me feel like a tight rope walker who has always used a safety net, but now will be making that trip across the wire WITHOUT the net. My head knows this is the correct thing to do at this point in my cancer journey. While I do not have any heart issues, thankfully, I do have osteopenia, and could develop osteoporosis. Reading several articles on TSH suppression, and how the treatment guidelines have changed over the past few years, has made me feel a little more comfortable in letting my TSH return to a low normal value. I trust my endocrinologist, and know that she will monitor me closely, and if there are signs of a recurrence, my doctor will act accordingly. That is what my head is telling me. This is what my heart is saying...
I am fearful that I might have a recurrence of the thyroid cancer. I had breast cancer in 2015, and had bilateral mastectomies, as well as three months of chemotherapy. If I could have cancer two times, why not three? In the studies that I have read on TSH suppression, they point out that unless the patient has on-going thyroid cancer, not well controlled with surgery or one that does not respond to the I-131 treatment, keeping a patient's TSH suppressed indefinitely can cause more harm than good. The studies that I read also said that the outcomes were actually better in the patients who had their TSH returned to low normal. ( again, I am NOT talking about patients with anaplastic thyroid cancer, or those who have persistent thyroid cancer).
Testing time for me, if it is for my breast cancer or thyroid cancer, has always been stressful. This time, it seems more so. I have to make a big decision and there are no guarantees either way. I know that my endocrinologist wants me to let my TSH return to low normal. To accomplish this, my doctor will have to cut back on my thyroid hormone replacement dose. My body will have to yet again, adjust to another dosage change- one that will bring side effects that all thyroid cancer patients are familiar with. Even without the TSH situation to consider, a dosage change in thyroid hormone medication sometimes has unpleasant consequences. Fatigue, changes in mood, hair loss, cold intolerance, weight gain- just to name a few fun things.
I try to stay busy during the " waiting time" for my big checkups. I try to make time for exercise, visits with friends, short trips, a little " retail therapy", reading- anything to take my mind off of things. This very cold weather makes it difficult to go outside right now. Nature revitalizes me, but I am pretty cold intolerant, so this is a little challenging. I wish that I had the magic cure for pre- test anxiety, but I do not. I would suggest that if you are waiting for a cancer checkup, be good to yourself. Do things that you enjoy, and surround yourself with people who you love and and who will love you back.
I will of course blog about my results from my check up. Hopefully, I will be prepared to walk that wire without a net. The Pollyanna side of me says to " go for it!"- that I am making the right decision, and that everything will be fine. The " Debbie Downer" side of me, admittedly smaller, but still present, is saying : " holy sh**t!". Results coming in soon...
Thursday, January 31, 2019
Friday, January 11, 2019
The Pros and Cons of TSH suppression in thyroid cancer patients; a case study... about me.
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.
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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