September is Thyroid Cancer Awareness month. Here are a few things that I have learned over the past twelve years...

In 2010, I was diagnosed with stage three Papillary with Follicular variant thyroid cancer. I had a total thyroidectomy, with eleven lymph nodes and two cancerous parathyroid glands removed. A couple of months after my surgery, I had a quite large dose of the I-131 so that this would hopefully kill any remaining cancerous "rogue" thyroid cancer cells. I am happy to say that I am still in remission, thanks in great part to a wonderful endocrinologist. Here are some things that I have learned over the past twelve years. Everyone's experience is different, but I hope that by sharing what I have learned, I might help someone else on their journey.

1) No, this is not the " good cancer"!! Yes, it is usually very treatable, and survival rates are good- especially for the differentiated thyroid cancers ( DTC), which include Papillary and Follicular. The reason this is not the " good cancer" is, well, it is cancer! No cancers can be described as good. With thyroid cancer there is constant monitoring and testing , constant dosage changes, various symptoms that can  happen to a person without a thyroid ( remember- the thyroid gland controls EVERYTHING) and the worry of recurrence. One might say that thyroid cancer has a lot of baggage. Anyone, at any age can have thyroid cancer. It does not discriminate, and most of the time it is difficult, if not impossible, to pinpoint the cause(s) of thyroid cancer. I have an idea of  how I might have been predisposed to thyroid cancer, but for the most part, I try not to dwell on this. My main focus is trying to take care of myself and keeping up with my tests,etc. which leads to #2...

2) Keeping a copy of all blood work, tests, surgeries, treatments, etc,. has been invaluable to me. I have a notebook set aside for my records. Remember, these are YOUR records. In the past, I asked my doctors' offices for copies. Now, with patient portals, I can view and print my test results. This makes it easier for everyone, I think. As an example, a few years ago my endocrinologist was changing computer systems. There was an important test that my doctor wanted to look at, but it was missing from my chart. I had a copy of the test ( sometimes I carried my notebook with me and this was one of those times) and was able to pass it along to my doctor. 

3) If one feels like something is wrong, it probably is. Five years before my thyroid cancer diagnosis, I was seeing a different endocrinologist. I told him that I was extremely tired and had no energy. He told me that it was "stress" and he did not order any additional tests to check things out. I did not feel good about this and sought a second opinion.  I was lucky enough to find my endocrinologist who was my doctor for 20 plus years. When I told her how I was feeling, she ordered blood work and then did a biopsy- the rest is history, of course. In other words, do not hesitate to speak up for yourself and/or seek another opinion if you feel that something is "off".

4) There is a link between thyroid cancer and breast cancer. I was diagnosed with invasive lobular breast cancer in 2015. I am currently in remission, and hopefully will stay there. I am not relating this to scare anyone, I would just like to remind everyone who has had thyroid cancer to be sure to get a mammogram as scheduled. Of course, it works both ways. If one has had breast cancer first, one should get a neck check and report any unusual symptoms to the doctor. Early detection for both cancers is the key.

5) I would say that anyone who has had cancer has a somewhat  compromised immune system. It is important to get all recommended vaccines, as we are probably more susceptible to getting sick. I can not say enough about how important getting enough sleep and eating good food is. Our bodies repair themselves at night, and we also need good food to nourish ourselves. Sounds simple, but sometimes hard to accomplish. 

6) I have found " my people" online, in cancer support groups. No one knows how it feels to have had cancer like another cancer patient. Talking to others, albeit online or in person, helps relieve stress and improve our mental health . Our families and friends  can be a great source of support and love, too. I do not think being stoic and not asking for help is productive. Do not be afraid to reach out to others. Your experiences may just help others as well.

7) The most important thing that I have learned from thyroid ( and breast) cancer is to be YOUR OWN BEST  PATIENT ADVOCATE!  I have said this many times, but do not be afraid to ask questions, voice any concerns, and  get a second ( or third or fourth) opinion if necessary. It is hard sometimes- this spoken by a person who had to try FOUR times, after my previous endocrinologist retired, to get an endocrinologist who was a good fit for me. What was important for me ( and I made a list of pros and cons) was that the doctor was open to hearing how I was feeling  and would take my concerns seriously. While I realize the importance of blood work values,  I am not just a set of numbers! I need to be able to discuss results and treatment plans with my doctor. I did not want a doctor to "dumb it down" or make decisions without my input. I have been dealing with thyroid cancer for twelve years, and I know a few things about having it! Having finally found a doctor who is a good fit for me, I can feel confident in his treatment plan for me. 

I am sure that I left something out in my list of the important things that I have learned about having thyroid cancer. But for those people reading my blog, just remember that #7 is the most important advice that I could give anyone. Best wishes and good health to all thyroid and breast cancer patients out there. You are not alone- we are in this together. May we all be able to help others, and may we all have continued good health. 

This is a good news- bad news post, or one could call it a " cautionary tale".

It has been a while since I posted a blog! Summer has been a busy, but unusual one for me. I have had the pleasure of taking care of our grandchildren, two of them while their parents took a vacation, and at times, all four! This has been enjoyable, but let's just say that I am not as young as I used to be. I certainly was ready for a rest after they returned home. I was and still am dealing with some health issues... but first the good news. 

After several tries, I have finally found an endocrinologist who will listen to me. When I write " be your own best patient advocate" I truly mean it. It took me four tries to find someone who had a similar way of practicing- as compared to my long time endocrinologist who recently retired. I had almost given up on finding someone that would be a good fit for me. But I persevered, as the saying goes. My new endocrinologist actually listened to what I had to say- how I am feeling and my expectations for treatment going forward. He upped my dose on the thyroid hormone I am taking, and I feel much better. I can actually get through the day without taking a nap- which has been useful this summer especially. ( Not all of my grandchildren nap)  This is the good news I wanted to write about. Now, for the bad news...

Some of us who have had thyroid cancer, or possibly, have a thyroid condition  ( Hashimoto's, etc) can be somewhat immunocompromised. That is to say that our immune systems do not function as well as they do in a healthy person. I feel very fortunate that I have not had, so far at least , Covid. I have had all vaccines and booster shots and have worn a KN-95 mask when I go shopping. I have been as careful as I can be, but I feel like a little luck may be involved at this point.

What I unfortunately have had, and still have, is shingles. The main reason that I wrote this blog is to strongly encourage thyroid cancer patients 50 years and older to get the shingles vaccine. Shingles has been very painful for me and if by sharing this information I can prevent even one person from getting shingles, I will be happy. Shingles generally lasts from 3 to 5 weeks, although it can last for months. I have had shingles for 3 weeks now, and I am not over this yet. I have it on my scalp, eyebrow, forehead, and here is the tricky part- in one of  my eyes. I have been going to the ophthalmologist once or twice a week since my diagnosis. I first went to urgent care, and then was instructed to go immediately to my ophthalmologist if my eye became itchy, red or painful. Luckily, I got an early diagnosis, and was able to start on the anti-viral tablets and an eye ointment to help a little with the itching. 

The old shingles vaccine was only from 30 to 50 % effective. The new vaccine, called Shingrix, is over 90 % effective. It is a two shot vaccine, the second vaccine is administered six months after the first one. Since it is possible for me to have shingles again in the future, I am going to get the vaccine just as soon as I recover from  having shingles. From what I have read, I should be able to get the vaccine in 4 to 6 months from now. It is also possible to go into your neighborhood pharmacy to get your shingles vaccine. One does not need to go to the doctor to get this vaccine unless one wants to do that.

While it is extremely important to get our Covid vaccines and boosters, I think, it is just as important to get other vaccines as scheduled. It is also important to get our recommended  screening tests such as mammograms and colonoscopies. We all want to be as healthy as possible. Getting our vaccines and screening tests are like maintenance for our bodies. 

Please learn from my mistake! As my new endocrinologist said, "Health professionals are sometimes the worst patients. They take care of their patients but neglect to take care of themselves." So if you qualify for the shingles vaccine, please get it as soon as you can. If one has had chicken pox as a child, one has the virus in the body. Stress usually causes the virus to become active and the resulting cause could be a case of shingles. We all have a lot of stress to deal with. Be smart- get your shingles vaccine.

The link between high cholesterol and TSH levels in patients after total thyroidectomy

 I have long suspected a link between my TSH levels and my cholesterol levels. WebMD states that " If you have thyroid disease, you're more prone to have high cholesterol levels. In fact, as many as 13% of people who have hypothyroidism will also have high levels of " bad" LDL cholesterol. Hypothyroidism is also linked with too high levels of triglycerides( blood fats that are associated with cholesterol). Both of these issues increase your risk for heart disease and stroke."

OK, here  is my proof! Well, part of it. I was curious about cancer patients, like me, who had a total thyroidectomy and had to depend on thyroid hormone replacement. How do our TSH levels affect our cholesterol? I found a ground breaking study ( well, to me, anyway) about differentiated thyroid cancer ( this includes papillary and follicular and is abbreviated, DTC) and the association between TSH ( thyroid stimulating hormone) and high cholesterol levels. The name of the study is " Association between Thyroid Stimulating Hormone level after Total Thyroidectomy and Hypercholesterolemia in Female Patients with Differentiated Thyroid Cancer: A Retrospective Study." This study was published in the Journal of Clinical Medicine on 2019 Aug: 8(8): 1106 and is authored by: Young Ki Lee, Hokyou Lee, and others. The information that I will provide in this blog is from this study. 

At first, physicians kept thyroid cancer patients' TSH completely suppressed- which means essentially zero. This was done so that hopefully no rogue thyroid cancer cells could be "awakened" and lead to spread- either in the neck bed or other places in the body. In patients where concerns over recurrence were fairly low, the general treatment protocols changed. Instead of keeping the TSH at near zero, it was decided ( who decides these things?) that it would be best to let the patient's TSH creep back up to within the normal range. This study found that these patients who achieved normal TSH levels after thyroidectomy, also had high cholesterol values. Fun fact: thyroid hormones help the liver process the cholesterol in the blood stream. If thyroid hormone levels are low, the blood is processed less efficiently, so the cholesterol can increase. If there is anyone out there who does not know this already, high cholesterol can cause heart disease and stroke for starters. 

One of the biggest take aways ( at least for me)  from the article cited above was that " normal " TSH levels could lead to high cholesterol due to insufficient replacement of thyroid medication. In other words, normal TSH levels are not an indicator by themselves as to what would be  a correct thyroid replacement dose. It is important to look at serum cholesterol levels as an additional marker in the determination of a proper thyroid hormone dose.  The study also mentioned the fact that a patient with "normal" TSH values could actually be hypothyroid due to T3 deficiency. More on this fact at the exciting conclusion of this blog!

So, we have learned that the higher the TSH, the more likely the patient is to have higher total cholesterol or LDL cholesterol. At this point, you may be wondering about exact blood values for TSH. What is considered " normal", high, low, or optimal. When one has blood work done, there are slight variations in the level- from lab to lab. I am citing the values that were used in this study. Obviously, there will be some variation, but this is a pretty tight range. 

TSH values from 0.3-2.0 mIU/L were associated with 1.86 to 5.08 times higher odds for having high cholesterol. This was considered a moderate or normal level in this study.

TSH values from 2.0-5.0 mIU/L were associated with 2.85 to 6.95 times higher odds for having high cholesterol. This was considered a high TSH in this study.

TSH levels of less than 0.02mIU/L in patients were  associated with higher cardiovascular mortality values. This was considered a low TSH in this study.

Basically, too low is potentially harmful as is too high when looking at TSH values. Where is the sweet spot? According to this study it is, drum roll please:

A mildly suppressed TSH level of 0.03-0.3 mIU/L may be the optimal value ( aka, sweet spot)  to have to minimize cardiovascular events and keep that darn cholesterol down where it should be!

I am seeing a new endocrinologist next week. ( Side note: yes, I am still searching for that special endocrinologist who is a good fit for me. I have yet to find a physician like my old endocrinologist who retired a few years ago ) .I am going to take this study with me and talk with my new physician about it. My previous endocrinologist ( not my retired one)  lowered the dose of my levoxyl and I do not feel well! My T3 is down, while my T4 is within normal range. My TSH , measured a month or so ago, was 0.8. I feel that it is higher now as I am having hypothyroid symptoms. I do not need to explain what these are to any thyroid cancer patient! 

After reading this study, I would like for my lab results to be in the above mentioned " sweet spot" range. I  have not had my cholesterol checked in a while, but I do know that in the not so distant past, my cholesterol was creeping up. It was higher than it had been before I had my thyroidectomy. The  hypothyroid  symptoms that I have been experiencing are impacting the quality of my life. And I certainly do not want my cholesterol to get out of control!  Hopefully, studies like this may help more physicians to realize that there is a optimal range or sweet spot for TSH so as to prevent  recurrence, being able to keep  cholesterol at a healthy level, and enabling the patient to feel  as " normal" as possible. I am hoping that there  will be some juggling  or dose adjustments of my thyroid dose coming up. There will probably  be more blood work, but I am willing to undertake this. I just need to find an endocrinologist who is willing to take that journey with me. 

The Thyroid and liver connection- especially regarding liver function test results

 I have long wondered about a possible connection between thyroid disorders and liver function tests. The following  is anecdotal evidence, primarily involving myself and another family member ( who shall remain nameless). When all was well in thyroid test/function land, our liver enzymes were in the normal range. However, when I or this other unnamed individual had a dosage change or were feeling poorly, i.e, in the very  hypothyroid range, our liver enzymes were elevated. I have also read comments on other thyroid cancer websites expressing the same concern- or, " my thyroid function tests are indicating a very hypo condition, and my liver enzymes tests are elevated. Is there a connection?"

It was difficult for me to find credible, emphasis on the word credible, sources on the relationship between the thyroid and the liver. This is the best quote that I found concerning thyroid and liver function: " A complex relationship exists between thyroid and liver in health and disease. Liver plays an essential physiological role in thyroid hormone activation and inactivation, transport and metabolism. Conversely, thyroid hormones affect activities of hepatocytes and hepatic metabolism. " This quote is from an article published in Endocrinol Invest. 2020 July; 43(7): 885-899 by E. Piantanida, S. Ippolito, D. Gallo and others. In other words, if one has trouble with the thyroid gland, there may be some problems with the liver and vice-visa.

So as not to alarm anyone,  I did find an article specific to the relationship of liver function tests and thyroid function tests. This article came to the conclusion that both hypothyroidism and hyperthyroidism can affect liver function tests. The objective of this study was to try to determine if there is a correlation between the  effect of thyroid dysfunction on liver function tests. So, basically, both liver function tests and thyroid function tests can be affected by the other. Abnormal readings may indicate disease in either organ, or it may not. At the end of one of the papers I read there was a blanket statement that " more studies are needed, and so on..." I always assume that more studies are needed on just about everything! Our thyroid glands affect every single organ in the body. That little butterfly shaped organ sure can cause a lot of trouble for those of us who have had thyroid cancer or have thyroid disease of any type. 

I, along with my family member, have long noted the relationship between how well we are doing with our thyroid function and the results from liver function tests. For me personally, I try to pay extra  close attention to my liver function tests due to the fact that I do not have a thyroid gland. I depend solely on my thyroid hormone  medication to keep my body functioning properly. When my last ( latest) endocrinologist reduced my thyroid hormone dosage, I worried about how it would affect my liver enzymes. I am having blood work this week ( for another reason) , but I  will ask my family physician to please check my liver enzymes as well as my thyroid function tests. 

I do not see my new endocrinologist until the middle of next month. I am not sure what she will do as far as adjusting my thyroid hormone dose, as this will be the first time that I have seen this endocrinologist. I am hoping that this physician will discuss my treatment plan  with me and listen to my concerns. I have a list of objectives to discuss with this physician- on what I would like done in regards to my treatment. I understand that this endocrinologist is the expert- but like with  my endocrinologist who recently retired- I want to be able to discuss how I am feeling and treatment options before any medication changes are made. In my opinion, the doctor patient relationship should be a partnership. I really appreciate a physician who listens to how I am feeling, and takes that under consideration along with the lab result numbers. As I have often said, we thyroid cancer patients are not just a set of numbers. We have feelings and ideas about our treatments and what works best for us. 

To recap, it has been my experience, and from other anecdotal reports, that being hypothyroid can indeed manifest in somewhat higher than normal liver function tests. Of course, one must consult with one's physician to rule out any liver disease or thyroid disease. Living without a thyroid is sort of a "tightrope walking" experience. The slightest changes in thyroid hormone dose can impact how a patient feels. I think the majority of thyroid cancer patients have had several dose changes over the course of our disease. It does take a period of time to adjust to these changes, but sometimes another dosage change or even changing the type of thyroid hormone drug prescribed, is necessary for us to feel well.  

Getting a second, third or maybe even a fourth opinion

People who have been reading my blogs lately, and thank you if this includes you!, may have noticed that I am still  searching for an endocrinologist that is a good fit for me. My endocrinologist of over 20 years retired recently, and I have been searching for, to be honest, someone just like her. She was intelligent, kind, sensible, explained the reasons for treatments, and was  easy to talk to. She did not sit behind a big desk and lecture on what she was going to do. She sat beside me and we discussed my blood work, and there was a little give and take. She respected my opinion, and while the final decision was hers, she was willing to compromise if I felt strongly about matters concerning my treatment. Is this too much to ask of a physician? I am beginning to think that it might be. Of course, another gold star for her was that while another endocrinologist just dismissed my concerns as " stress", she actually believed me when I told her something was not right. My " near saintly" endocrinologist did a biopsy and found my thyroid cancer. I was already stage three, and had I not found out when I did, things could have been a whole lot worse for me. 

What I find works best for me is having my blood work done the week ahead of my office visit. Then, my endocrinologist and I can discuss the results from my blood work and  she can make any changes on my dose/treatment  based on the blood test results and how I am feeling. This is yet another gold star- that my previous physician made decisions not only on the blood work, but how I was actually feeling. I have often said that thyroid patients are not just a bunch of numbers. It is important to do blood tests, of course, but how we are feeling is very important also.

The endocrinologist that I am seeing now ( for the present time, anyway) called in a lower dose of my thyroid medication. She did not talk to me about lowering the dose, and I was surprised when I picked up my prescription. I did contact her about this, and she provided a reasonable explanation of why she went down on my dose. I would have liked to have had some type of discussion before I found out when I went to pick up my refill. I think most of us do not like to go down on our dosage. It takes a few weeks for our bodies to adjust to a lower dose. If you think about it, unlike those who are hypothyroid and have at least half of their thyroid gland, those of us who do not have a thyroid depend 100% on our thyroid medication to survive. Changes in our dosages really can impact our quality of life- to be dramatic. 

So, I have another appointment to see another  new endocrinologist next month. This endocrinologist specializes in thyroid cancer treatment. I have read good patient reviews about her, and am hopeful this will be a better choice for me. It is NOT easy to get second, third, fourth, etc. opinions. It is necessary to have a good doctor-patient relationship, however. While I am  not actually expecting to find a physician that is exactly like my former endocrinologist, I feel that it is important to see someone who meets my expectations. I know what kind of endocrinologist that I would like, I just have to locate her/him. I feel that I owe it to myself, as well as my family, to find someone who can give me the care that I need to thrive, not just survive. 

I will of course write another blog about my experience after my appointment. I am planning on taking a list of questions, and my expectations with me to my appointment. I think that it is important, and really only fair, that the physician knows what I am looking for. Also, hopefully the new endocrinologist will understand that I want to have an active role in my treatment.  I am so hoping that this time will be the charm! 

Can there be PTSD in Cancer patients? If so, what is it and how can it be diagnosed?

 When one hears the term, PTSD or Posttraumatic Stress Disorder, one immediately thinks of a person who has suffered a traumatic injury in combat. Lately there has been interest from the medical profession in PTSD among patients who have/had cancer. Sometimes this is referred to as CR-PTSD ( Cancer related posttraumatic stress disorder). 

No one wants to have the "Big C." A cancer diagnosis can cause fear, physical and emotional suffering, a strain on financial stability, as well as alienation from family and friends. When the word "Cancer" is used, chemotherapy, hair loss, nausea and vomiting, grueling treatments, physical impairment as well as other scary thoughts come to mind. Sometimes there is even a stigma associated with cancer- perhaps the location of the cancer or making the incorrect assumption that the patient was a smoker, a heavy alcohol user, etc. 

With thyroid cancer, as many if not all of us know, we have to deal with hearing that our cancer is "the Good cancer". This marginalizes our cancer, as well as our feelings about having the disease, treatment and outcomes. Personally, I used to sort of agree and go on when someone said this to me. Now, I do not suffer fools, one might say. I am not impolite, but I will point out  that  while thyroid cancer is generally easily treated, and outcomes are generally good, THERE IS NO GOOD CANCER! Outcomes and treatment for thyroid cancer depend on the type(s) of thyroid cancer one has. Unless you have/had thyroid cancer, a person probably has no idea that there are several types, around 5 I think. 

According to the American Cancer Society, thyroid cancer patients have about a 33% increased risk of developing a second primary cancer. ( In my case, this was breast cancer). While this is an anxiety creating statistic, early detection is key to good outcomes. The best way to deal with this is to have all recommended screening tests ( mammogram, colonoscopy, etc. ) on a regular basis. 

CR-PTSD, like PTSD, is basically caused by the failure to recover from a traumatic event. Some symptoms of CR-PTSD are as follows: nightmares, reliving the event over and over, heart palpitations, shortness of breath, pain in a mastectomy scar ( or other location), chemotherapy related nausea and or vomiting. Patients suffering from CR-PTSD can experience anxiety, fear, irritability, and the feeling of being emotionally numb- or detached from the situation. This detachment  can cause isolation and disengagement. 

Patients with CR-PTSD or PTSD, react to certain cues or triggers, which may be non-life threatening ones, but somehow related to the cancer experience. To sum this up simply, the amygdala part of the brain is in a state of hyper-arousal, and can not tell the difference between dangerous and non-dangerous events. I will use myself as an example. When I was receiving chemotherapy for breast cancer, I usually went to the restroom after checking in. The anti-bacterial hand soap had a strong fragrance that was very unpleasant to me. That triggered the "chemotherapy nausea/vomiting" cue that still remains- six years after my chemotherapy was completed. Even when I am returning for a checkup and blood work, just getting the slightest whiff of the hand soap  triggers my nausea ( and occasionally vomiting). 

According to a report in the Canadian Oncology Nursing Journal, 2019 Spring issue, "PTSD symptoms are considered pathological when they persist for more than one month post-trauma". The article also stated that " PTSD is often misdiagnosed as anxiety or depression. This makes treating the PTSD challenging to recognize and treat."

According to the above mentioned journal article, CR-PTSD can negatively impact patients health, treatment and quality of life. Someone with PTSD could purposely  miss doctor's appointments, fail to complete treatments, avoid routine health screening tests, avoid social interaction with friends- so the person does not have to talk about the cancer. These behaviors can actually affect overall survival of the patient. 

A good take-away statement from this article is as follows: " Cancer related PTSD is often missed by a patient's clinical team, and can impact treatment outcomes, recovery, and quality of life post-treatment. The prevalence of PTSD is greater post-cancer compared to the general population." 

The authors of this study recommended that patients with CR-PTSD be referred to a specialist who is trained in treating patients with PTSD. In researching this subject, I found that the statistics concerning how many patients have  CR-PTSD to be wildly different. For that reason, I have not included any specific percentages, just the above mentioned prevalence of PTSD in cancer patients. 

Personally, my CR-PTSD is fairly mild and seems to be improving a bit. I have a tendency to be anxious- even before I had two cancer diagnoses. I am sleeping better overall, but there is one thing I can not abide. That would be the anti-bacterial hand  soap in my Oncologist's office! 

Seriously, if one suspects CR-PTSD, please discuss this with your Oncologist, PCP or other health care specialist. This is a real disorder, brought on by cancer induced trauma. There is no shame in having CR-PTSD. Treatment is key- please seek treatment for a better quality of life.

Changing seasons brings challenges for thyroid cancer patients...ho,ho,ho.

 First off, I have not written a blog in quite some time! This is partially  due to the demands of the holiday season. I love having my family visit, but there is quite a bit of preparation required when one has family members and friends over to visit . It is wonderful being able to have some " safe" family and friend  time again, but it does require some work and planning. This involves the first challenge that I am going to talk about: fatigue.

It is difficult for anyone with  a thyroid to imagine how much fatigue a thyroid cancer patient can be dealing with. No matter how good a thyroid replacement drug may be, medication  can never completely duplicate the hormones made by a fully functioning ( or present) thyroid gland. Before thyroid cancer, I could push through being tired to accomplish whatever tasks that needed to be done; and we do have extra tasks during the holidays. We may enjoy them, they may be joyful, but they also may be over the top energy wise. I will  hit a wall, so to speak, at times. I just can not make myself go past a certain point. My family understands this, for the most part, but no one understands like another thyroid cancer patient! I wish that I had the "magic remedy" for this, but sadly, I do not. One thing that needs to be considered, of course, is your thyroid blood work. Is your TSH, T4, T3, etc., levels within normal ranges? You need to have this discussion with your physician of course. Also,  trying to get more rest (!) and enlisting help from friends and family are about the best things that one can do. And please remember to be patient with yourself.  All one can do is one's best. 

I am dealing with a new endocrinologist now, and trying to decide if this is a good fit for me. I have not made up my mind as yet. I have been searching for a while, and though I know that I will most likely  never be able to replace my former endocrinologist, who every day  is becoming more and more of  a "saint", I would like to find one that I can work with. I want a doctor who listens to how I am feeling, does not only look at the numbers on my lab reports, and is willing to spend a little time with me during office visits. I am taking my own advice about being my best patient advocate, but finding a good physician is definitely more challenging now. More doctors have retired, increasing the work load on physicians who are still working. The endocrinologist that I am seeing now has reduced the dose of my thyroid replacement hormone. Yes, the dreaded " going down on  the dose" syndrome. Almost every thyroid cancer patient knows the fatigue that one has when our doctor changes our dose. My TSH was too low, so she reduced the dose without discussion. We have communicated via email, which helped, but I would like to have had the opportunity to discuss this change of dose in person. I have an earlier blog on TSH- suppressed or not- during treatment for thyroid cancer if anyone cares to look back through my blogs for more information. While reducing the dose of my thyroid hormone replacement medication may be the best thing for me overall, it is adding quite a bit of extra fatigue to my holidays.

A second challenge brought on by the winter season is dry, itchy skin. When the regulatory hormones produced by the thyroid decrease ( as in hypothyroidism) or disappear ( due to thyroid loss) one problem is dry, itchy skin. What can one do? There are several ideas to help our skin during this cold, winter season. Along with low or missing thyroid regulatory hormones, we are having to use heat- which also dries out our skin. Here is a list of some ideas that may help our dry, itchy skin:

* Find a good skin moisturizer. Creams in a tub are a better choice than those with a pump. I was not aware of this until lately, but those that are dispensed by a pump contain alcohol and other additives which are used to get the cream to flow through the pump. The alcohol and other additives may dry out the skin even more. Creams with ammonium lactate or urea (keratolytic agents) help remove the dead , flaky layer of the skin. These allow for the moisturizing agents in the cream to get deeper into the skin layers. Another choice is coconut oil- a natural oil. I have tried the coconut oil, and use it occasionally, but it is a little messy for me. If you use this, apply after bathing when skin is a little warm, allow to dry a little, then remove excess with a towel. It is effective, just requires a little more effort. I do not recommend petroleum based products, as I feel they are not good for the environment and may be somewhat harmful in the long run. This is just my opinion, though. 

* Use  very mild, fragrance free cleansers/soap that contain emollients. Soaps can be very drying and can contain alcohol and other chemicals that may dry out or irritate the skin. For reference, I use a natural soap that contains goat's milk, shea butter, argan oil and dead sea minerals. It is very lightly scented with natural lavender oil, but it does not bother my sensitive skin. In fact, I find this soap very soothing.  I also like organic soaps- as long as they do not contain strong fragrance. 

* Keep bathing/shower time as short as possible and use warm, not hot water. This one is extremely hard for me, as I like longer showers with water leaning towards the hotter side! Just do your best with this one...

* Use a humidifier to add moisture back into the air. Good idea, but one must keep the humidifier clean to prevent mold, so there is a small price to pay. 

* probably one of the most important things to do: DRINK LOTS OF WATER! I do not have a problem with this one. I have found that using a thermos, and carrying it around with me during the day at home, taking it in the car, and leaving it beside my bedside table at night is a great way to easily have water available all throughout the day. What happens on the inside of our bodies is reflected on the outside, I think. 

And finally, if all else fails, and the itching becomes unbearable, or a rash develops, see a dermatologist. There are prescription creams available that might help. This is a wonderful time of the year! Try to enjoy the changing of the season and get as much rest as possible. Good skin care is so very important, too. Happy Holidays to everyone- which ever holiday one celebrates. And here's to a better and healthier New Year.

A " pink" blog for October

I am a thyroid cancer survivor, and a breast cancer survivor. Those who read my blog will know this already. When I started my thyroid cancer blog, eleven years ago, I had no idea that I would be diagnosed with breast cancer 5 years later. After my breast cancer diagnosis,  I tried writing a second blog- a breast cancer blog- but decided that it was just too much to juggle. My solution has been to write a sort of " twofer" blog and incorporate information on both thyroid cancer  and breast cancer. I do focus primarily on thyroid cancer, as there are already a lot of breast cancer blogs. I also feel like perhaps there is more information out there on breast cancer as compared to thyroid cancer. But in honor of October being National Breast Cancer Awareness month, I am going to provide a little more information on breast cancer .

The American Cancer Society, as well as other publications, have noted a link between developing breast cancer and thyroid cancer. I have just read an intriguing article on this link, which I would like to share. The source is from the AACR ( American Association for Cancer Research) which publishes a magazine called: Cancer Epidemiology Biomarkers and Prevention. This is from an article called: " A linkage between thyroid and breast cancer: A common etiology?" The authors of this study are Bolf, Sprague, and Carr. The article was published in April of 2019. I checked for updates, and the article is still current with no changes noted. These are the key takeaways that I got from this article:

* there is an increased risk in having both breast and thyroid cancer

* there are probably some genetic variants that link these two cancers

* hormonal signaling from the thyroid gland and from estrogen may play a role in these cancers

* lifestyle and environmental factors also may play a role in development of both cancers

* there is a " critical need" for more studies to aid in the diagnosis and clinical management of both diseases

*women with breast cancer are 2-fold more likely to develop future thyroid cancer

* women with thyroid cancer have a 67% greater chance of developing breast cancer than the general population.

* estrogen is implicated in the development of thyroid cancer and may explain why women develop the disease roughly four times the rate that men do.

* the etiology of these cancers and possible causative factors are at an "infancy" stage and are just beginning to be studied. Further studies are needed.

* we need to determine which tumorigenic pathways are common to both breast and thyroid cancer.

* we need studies that use public databases to explore extensive cross comparisons. 

Just from my own personal experience, and from reading posts in several other thyroid cancer sites, I have come to the conclusion that yes, there is a connection between developing both thyroid and breast cancer. The conclusion to the article above was that more studies need to be conducted to determine common causes and preventative measures. I did not have this information after I was diagnosed with thyroid cancer. I am writing this not to scare anyone, but to heartily encourage regular mammograms and thyroid neck checks. I have always had regular mammograms. I am positive that I am still here because I had my mammograms. As far as the thyroid cancer goes, my physician was monitoring my thyroid nodules, and did a biopsy when they began to enlarge. Had I known at the time  my thyroid cancer was diagnosed, that I was at increased risk( 67%) of developing breast cancer, I would have insisted on mammograms and ultrasounds every six months instead of yearly. My outcome would probably have been the same, but perhaps I would have had a lower stage breast cancer. Again, this is not information to alarm, but rather to encourage regular mammograms and self check- of breasts and the neck. 

Wearing pink is good, but ladies, please check your necks! And do not hesitate to see your physician if you feel a lump in your neck or your breast. Knowledge is empowering and lifesaving. Regular mammograms and self checking of the breasts and neck area are our best tools against cancer. Early detection is key to a positive outcome. 

September is Thyroid Cancer survivor month... here's a few things that I have learned over the past eleven years.

This blog sort of expands on the topic of my last blog," aftercare after thyroid cancer, aka, what now?" Up until very recently, thyroid cancer was the most rapidly increasing cancer in the United States. This was possibly due to increased detection, namely  MRI and CT scans. When testing for other conditions, sometimes a small thyroid cancer nodule would be detected at the same time, for instance. When I read this statistic from the American Cancer Society, of course, me being me, I had to find out what the fastest growing cancer in the United States is now. Well, it is primary liver cancer- in both men and women. ( with thyroid cancer, women are three times more likely to have thyroid cancer as compared to men.) 

Here are a few statistics from the American Cancer Society concerning thyroid cancer:

* in 2021, there have been around 44,280 new cases of thyroid cancer ( 12,150 in men, and 32,130 in women)

* there have been around 2,200 deaths from thyroid cancer.( in 2021)

*the death rate from thyroid cancer has increased slightly, from 2009 to 2018; up about 0.6% per year.

* thyroid cancer is commonly diagnosed at a younger age than most other adult cancers. 

From reader comments in other thyroid cancer websites, I have seen some confusion about recurrence of thyroid cancer, and the development of a second cancer. By definition, recurrence is thyroid cancer that returns after the completion of treatment. In contrast, a new unrelated cancer that is detected after one has thyroid cancer is called a second cancer. 

People who have had thyroid cancer may have an increased risk of developing these second cancers:

* breast cancer ( in women)

*prostate cancer

*kidney cancer

*adrenal cancer ( side note: for patients who have had medullary thyroid cancer, you might be at an even higher risk of developing this cancer)

Patients treated with RAI ( I-131) for thyroid cancer, usually after surgery, also have an increased risk of developing these secondary cancers:

* acute lymphocytic leukemia ( ALL)

*stomach cancer

*salivary gland cancer

Follow up appointments are key!! Since most thyroid cancers are slow growing, there is a risk of recurrence even 10 to 20 years after initial treatment. Let that statistic sink in! 

In my case, I had papillary with follicular variant, stage 3, thyroid cancer. For three and a half years, my thyroglobulin level  stayed elevated. I had a high dose of the RAI ( 155 milicuries of I-131) along with complete removal of my thyroid gland and eleven lymph nodes. While no cancer was detected in my lymph nodes, two of my parathyroid glands were cancerous and had to be removed. Also, the tumors had burst open and spilled out into the lymphatic system in my neck bed. My endocrinologist has been amazing over the years. I have had bi-annual ultrasounds, blood work and office visits. While this has been stressful ( test anxiety) I appreciate the good care that I have received. My wonderful endocrinologist has recently retired, and I am presently searching for a new physician who will monitor me, at least annually, and take my concerns seriously. 

Five years after my thyroid cancer, I developed a second cancer. Breast cancer- namely,  invasive lobular, stage 2B. I had bilateral mastectomies and 3 months of chemotherapy, and am in remission from this cancer as well. I have always had my yearly mammograms; so very thankful that the breast cancer was detected fairly early on. I am writing about this not to scare anyone, just to urge women to PLEASE get yearly mammograms and other tests that might be appropriate. Early detection is key to best outcomes.

So here is a list of the things that I consider most important for good care/management of any cancer:

* Keep records of all tests, office visits, procedures, etc. I have found this to be so beneficial over the years- both to myself and other physicians that I have seen. I have a special notebook for these records.

* Be informed! Do  your research on the type of cancer that you have been diagnosed with. Read reviews of physicians and surgeons before you make any decisions on what care would be best for you. Ask as many questions as you can. Take the list of questions with you  when visiting the doctor.  There are some excellent books out there providing good information on thyroid cancer, as well as good websites- ThyCa, and  the American Cancer Society- just to name two. 

* Be  your own best patient advocate! This is hard to do sometimes, but if something does not feel right, it probably is not. 

* If one does not have a good support system, there are some excellent support  groups online ( maybe not so much in person now with the pandemic- but hopefully this will change soon.)

* Keep up with your regularly scheduled tests and procedures. No need to panic, but this is just providing good care for oneself. If a problem is detected early, as I said, it is much easier treated and probably will have  a better outcome.

* Embrace your feelings. I try to keep a positive attitude, but if I am having a " down day" I tell myself that is OK, too. Of course, if these down days seem to be every day, then talk to a physician or therapist for some good mental health care. Having had cancer is a big deal! Hearing the words " You have cancer" is a life changing event. I think people deal with a cancer diagnosis in different ways. There is no right way, I believe. 

* While I did not feel that I returned to " normal", whatever that is, I have regained my life by taking better care of myself- both physically and mentally. I am trying to have a healthier lifestyle- by exercising, working on new hobbies, eating better ( most of the time, ha!), and just enjoying life in general. For me, being outside is very conducive to feeling better. Nature is the great healer, I truly believe. 

* I am a " worrier" and I am working on controlling my anxiety. I had this issue before I was diagnosed with thyroid cancer, and as you can imagine, it is worse now. This is a work in progress for me. I am far from perfect, but I am trying. 

In conclusion, happy Thyroid Cancer awareness month to all of my butterfly-less friends and thyroid cancer  warriors out there! I would like to especially give  a shout out to those women, like me, who get to celebrate Breast Cancer Awareness next month. The good news is that I am alive. I have survived two cancers, and am living the best life that I can. I sincerely wish the same for all those reading this blog...

After care following surgery and treatment for thyroid cancer-AKA, " what do I do now?"

 There are a lot of decisions to be made after one gets a cancer diagnosis. This is primarily a thyroid cancer blog, obviously, but I am a breast cancer survivor, too. A person with any type of cancer experiences the same challenges after the diagnosis and treatment phases of cancer are completed, in my opinion. For me, it was like a freight train rolling down the track. Once my cancer had been diagnosed, my "medical team" sprung into action with a plan for surgery and the best treatment for my type of cancer. I went along for the ride with the best doctors, surgeons, nurses, and other medical staff that I could find. I have been in remission from stage three papillary with follicular variant thyroid cancer for eleven years now. I have also been in remission from invasive lobular, stage 2B breast cancer for six years. For me, the medical part of my treatment as been a success ( so far!). But what has been missing for me, as well as other patients, I think, has been the after care. 

By after care, I mean complementary therapies. This is not to be confused with alternative therapies, which are unproven and would actually take the place of proven medical treatments for cancer. I certainly do NOT recommend using unproven alternative therapies to treat any kind of cancer. 

You may be asking " what are complementary therapies and why are they important?" Again, I will use myself as an example. After my diagnosis, surgery, and treatment for thyroid cancer, and later for breast cancer, stopped, I felt very alone. The medical staff had done their best to provide the care that I needed to survive the cancer, but the help that I needed to thrive after the cancer(s) was missing. When I was undergoing the medical treatments, surgery, chemotherapy, reconstruction ( breast cancer) everything was so regimented. Everything was mapped out for me and I knew exactly what I was supposed to do at all times. This "regimented life" came to a screaming halt- the freight train had applied the brakes, and I was asked to get off at my destination. 

With all of the medical stuff behind me, I was expected to go on with my life and thrive. How? Things had changed dramatically for me. I felt different, looked different and had no idea how to proceed. I was still in the "processing the information" stage of my cancer, and my medical team had just left me at the station. Alone. 

If one lives in a large city, there are holistic health care measures that are offered to cancer patients. I am a firm believer in treating the whole individual, not just the area where the cancer happens to be hanging out. I live in a small town that does not offer very much in the way of after care. I have done a little research on my own, and was able to find a few complementary therapies that have improved the quality of my life after cancer. I would like to share them with you...

1) Boost one's immune system. That is especially important now, during the Covid crisis. Getting vaccinated with the Covid vaccine, as well as getting a yearly flu shot is extremely important. Wear a mask! This has helped me avoid viral and bacterial infections when I have to go to the doctor's office or the grocery store, I think. Exercise, eating a balanced diet and getting enough sleep are also important.

2) Schedule a massage. A little tricky now, but as soon as it is safe, a massage is very relaxing. A massage can improve circulation, improve lymphatic function, soothe aches and pains, reduce edema, and reduce anxiety. 

3) Practice Qi Gong ( pronounced " ch'i kung). This is the practice of continuous flow of certain movements along with breathing exercises. This will actually increase the flow of oxygen in the body. I really like this exercise. It is like a dance, with controlled, precise movements. It is similar to Tai Chi, which also is helpful in regaining one's balance. I have not been able to take a class in person, but I have found some online instruction. I am sure there are some DVD's available for those who are interested. 

4) Yoga. Good for stretching and balance. I personally do not like this, to be honest. I like the idea of this, but my body does not. Still, this is a very good exercise for any age group, and can be modified to fit the needs of people with different health  and medical conditions. 

5) Meditation. When most people think of this, they think of someone sitting for hours, legs crossed, fingers touching ,etc. That is fine, but there are other forms of what you could call active meditation. The goal here is to quiet the mind and just be. These active forms would include listening to music, taking a walk outside in the fresh air, reading a good book, doing crafts, dancing, exercising, bird watching, and  many other things that would allow one to get the mind off of one's cancer and rest. 

6). Manage fatigue. Thyroid cancer patients sure have a lot of fatigue to manage! Our energy regulator is gone, and we must rely on our medications to do the job for us. (!) Fatigue is one of the most reported and challenging symptoms for any cancer patient  after surgery. Some of the fatigue is probably caused by the stress patients feel before the surgery, testing anxiety, changes in lifestyle, and challenges in dealing with family and friends. Our bodies are also dealing and adjusting to the removal of our thyroid glands, lymph nodes and surrounding tissues. Rest is the obvious solution, but not always the easiest one. Go to bed early, take short naps during the day if possible, limit errands or spread them out to different days. Learn to say " NO". A hard one for me, but it is very important now to not take on too many activities. Learn to ask for help. Also difficult for me, but if one does not ask, other people can not be expected to know how overwhelmed a patient might be feeling. 

I have always had to deal with anxiety. Having thyroid and breast cancer have only made this anxiety worse. For those who do not know the possible symptoms of anxiety, and they are different for every individual, they include: a rush of adrenaline( or the flight or fight syndrome) and this can come on suddenly without warning; increased heart rate- pounding, racing, or skipping; excessive sweating or cold chills; vertigo symptoms- extreme dizziness, problems with balance, nausea and/or vomiting; hyperventilating; difficulty breathing or a choking or smothering sensation; a lump in the throat; a sense of danger or impending doom. And this is just a partial list of the symptoms that can be caused by anxiety. I urge those who have heart symptoms, or if this is a new condition for you, please check with your physician to make sure that your heart function is normal. 

There are medications to treat anxiety, of course, but studies have found that actually " talk therapy", with a trained therapist may be just as effective as medication for most patients. Having  anxiety is nothing to be ashamed about. It is important to address this issue, and seek out positive ways to treat/deal with this mental health problem. 

So, to summarize, our wonderful physicians, surgeons, etc.  have handled the" medical part" of our cancer treatment. Unless we are offered holistic care, it is up to us to be our own best  patient advocate  and address the after care. It is important to seek out good after care so that we, as cancer patients, can have the best possible quality of life. 

Is there a link between having thyroid cancer and breast cancer?

 I have written about this subject- the potential link between thyroid cancer and breast cancer- before. Lately, I have seen more posts ,on the thyroid cancer websites that I visit, from women who have or had both kinds of cancer. I myself had thyroid cancer in 2010, and then breast cancer in 2015. Since no one else in my family has ever had either thyroid or breast cancer, and I did not have any of the known risk factors for breast cancer, I have been  curious as to if  there is some  connection between the two cancers. I have found some new articles about the possible link between these two cancers. 

In an article published by " Cancer Epidemiology, Biomarkers and Prevention- A Linkage Between Thyroid and Breast Cancer: A Common Etiology?", by Eric Bolf, Brian Sprague and Frances Carr, published in April, 2019, the evidence seems to point to a link. In the abstract the authors conclude that " breast and thyroid cancers are two malignancies with the highest incidence in women. Women with thyroid cancer are at risk for subsequent breast cancer, and women with breast cancer have an increased incidence of later development of thyroid cancer, suggesting a common etiology. This bidirectional relationship is reported worldwide; however, the underlying reasons for this co-occurrence are unknown."

The above mentioned article cites breast cancer as the most commonly diagnosed cancer in women, with over 250,000 cases per year. Breast cancer survivors are at increased risk for the development of a second primary cancer- frequently thyroid cancer. 

Thyroid cancer, which also predominantly affects women,  has more than TRIPLED over the past decades, including the aggressive variants. The risk of a second primary cancer , most often breast cancer, in thyroid cancer patients is increased. In an article published by " Clinical Thyroidology", it is stated that  patients with a diagnosis of thyroid cancer have a 33% increase in risk of having a second primary cancer.

In the article published by " Cancer Epidemiology, Biomarkers and Prevention", mentioned above, " women with breast cancer are 2-fold more likely to develop future thyroid cancer and women with thyroid cancer have a 67% greater chance of developing breast cancer than the general population. "

Radiation, which is sometimes a treatment option for breast cancer, is a well documented risk factor for cancer and is a major risk factor for thyroid cancer. Some clinical studies have shown that the radiation used in breast cancer treatment alter the thyroid's ability to produce hormones. 

Another concern, and a hot topic on  thyroid cancer websites, is the association of the administration of RAI, especially in large doses, and the development of breast cancer. According to the article mentioned above,  I-131 treatment for thyroid cancer revealed no association between developing breast cancer. A recent study found no difference in breast cancer risk between patients who where treated with I-131 and those who were not. 

This study concluded that there is strong evidence of a relationship between thyroid cancer and breast cancer. The study noted that the etiology of these cancers and possible causative factors are just beginning to be studied. Further investigation is certainly needed. 

In another paper  by Nielsen, White, et, al, entitled " The Breast-Thyroid Cancer Link: A Systematic Review and Meta-Analysis" there is an interesting discussion of the use of RAI in thyroid cancer and the possible risk of breast cancer. Some people think that thyroid cells ( cancerous or not) are the only cells in the body that could pick up the RAI dose. Actually, other organs that concentrate or eliminate iodine include: salivary gland, stomach, small intestine, bladder, and bone marrow. The mammary gland also may be able to concentrate iodine. This study comments that while the RAI delivered to breast tissue is low, it can not be ruled out as a possible carcinogen for breast tissue. Interestingly enough, the study found that there was no significant dose-effect relationship of RAI on breast cancer risk. In other words, just because a patient had a large dose of the RAI, there was no greater risk of developing breast cancer than someone who had a small dose. Further, " the risk of breast cancer following thyroid cancer was significantly elevated in BOTH RAI and non-RAI patients." 

In the Nielsen and White study, a shared genetic susceptibility was postulated as a causative factor in the  higher rates of a second primary cancer in both breast and thyroid cancer patients. Perhaps the patients have an unidentified mutation. More studies clearly need to be conducted on the role of genetics and the development/ relationship of these cancers.

My personal conclusions after reading through several papers and studies on the link between thyroid and breast cancer are as follows:

1) Yes, there is definitely a link between thyroid and breast cancer.

2)More studies need to be conducted to determine cause(s) of  the link.

3) I am not convinced that RAI does not pose somewhat of a risk of developing breast cancer, HOWEVER, I would still have made the decision to receive the RAI in the treatment of my thyroid cancer. I had an aggressive thyroid cancer, stage three, and I feel like had I not had the RAI, it would have returned. I would have tried to lobby for a somewhat lower dose, despite the study that said no dose-effect was found in the RAI dose and the development of breast cancer. This is primarily because I have had and continue to have salivary gland issues. This link is a proven one. 

4) Had I known at the time that I had thyroid cancer, eleven years ago, that this link with developing breast cancer existed, I would have had mammograms every 6 months, not yearly. My breast cancer( invasive lobular)  was an aggressive one and to quote my oncologist , " a sneaky one". It does not need lymph node involvement to reoccur. Early detection saves lives. Every woman should get, at the very least, yearly mammograms, especially if one has had thyroid cancer. 

5) For those women who have had breast cancer, please check your necks! Follow up with a physician who will monitor your thyroid- blood work, scans, etc. Please tell your physician about any changes in swallowing, fullness in the throat area , or just feeling extremely tired or " off". Early detection in thyroid cancer is important, also. Thyroid cancer is NOT THE GOOD CANCER! Some types are more aggressive than others and the effects of living without a thyroid are challenging and life long. 

6) As I mentioned earlier, there are so many women who  have written in thyroid cancer websites, that they had both thyroid and breast cancer. From my own experience, I suspected a link between the two. Until more studies are conducted, our best option is to be our own best patient advocate. Early detection is a key factor in our well being.  

We ( thyroid cancer patients) are more than just a set of numbers; or taking my own advice: be your own best patient advocate

Sometimes doctors treat thyroid cancer patients like we are just a set of  numbers. We are more than just TSH, T3, T4,  etc,  though! I had been seeing a really good endocrinologist for twenty years or so, and while I understand completely, I was saddened that she chose to retire this year. She is the one who diagnosed my thyroid cancer, after a previous endocrinologist told me I was just " stressed." I knew that there was a problem, and while stress can certainly make one feel badly, I instinctively knew that there was something very wrong with my thyroid. My, now retired, endocrinologist listened to me- how I was feeling, my symptoms, and did not just treat me like a set of numbers. She spent time with me and did not rush me through my office visits. 

I thought that I had found an endocrinologist to replace her, but I was wrong. I picked out a physician who seemed to have good reviews, but he rushed through my visits ( I saw him twice) and did not do some of the bloodwork that my old endocrinologist did. On top of that, he told me that since I have been in remission for ten years, he thought that I did not need further follow up appointments(!). I have read and do believe that thyroid cancer patients need follow up for life. This is a cancer that can return later on- there is no magic " five year" mark. I do not think that once yearly visits, once a patient has been in remission for a while, is excessive. Until just recently, in fact, I had twice yearly visits with my endocrinologist. To review, my cancer was stage three papillary with follicular variant. I also had two cancerous parathyroid glands that had to be removed. After my total thyroidectomy, I had a pretty large dose of RAI ( 155 milicuries). So, everyone's situation is different, but monitoring is important for every thyroid cancer patient- in my opinion. 

So, I am on the hunt again for an endocrinologist who treats me like a person, listens to me, does all necessary bloodwork, and is willing to monitor my thyroid cancer once a year. It is not easy leaving a practice and hunting down another doctor! I read several reviews of various endocrinologists and have finally chosen a new one whom I hope will be a good fit for me. I could not get an appointment until the end of July ( I was supposed to go back for a recheck in May) but I think that will be fine. I had to be my own best patient advocate again. Really, we should all take the responsibility for our health care. There needs to be a level of trust in our physician, and the understanding of our treatment/monitoring. But if something in our body seems off, we need to feel comfortable talking to our physician and coming up with a plan of action. 

I realize that things have not been easy during this time of Covid. Office visits have been so different, as far as how they are conducted, visit procedures, masks, just to name a few challenges. Thankfully, things are getting a little closer to normal for us all. There are some things that are different- masks are very necessary of course, in a doctor's office or hospital, but masks do make personal connection difficult. I do wonder if we will ever be able to fully return to how things were pre-Covid. 

I will of course report on my upcoming  visit to my new endocrinologist. And I hope to post a little more frequently now that my physical therapy for my knee replacement is wrapping up. The best advice that I have ever given to any thyroid cancer patient ( or any cancer patient) is to be your own best patient advocate. Sometimes I have to take my own advice...and I did. 

Wound healing in hypothyroid/ thyroid cancer patients

 I have not written a blog in some time. I have been preparing for a total knee revision surgery, which I had on March third. For those people not familiar with a knee revision surgery, it is a sort of " last ditch surgery" one has after a failed knee replacement surgery. I had my knee replaced a couple of years ago, and since then, I have not enjoyed the benefits that most people seem to have after this surgery. My knee had only gotten worse- limiting my mobility, increasing the pain and swelling in my leg,  and requiring the use of my cane. Worst of all, it limited my interactions with my grandchildren. 

My surgeon ( a new one!) had to remove the old joint and cement , realign the ligaments, as well as removing what he called " a ton of scar tissue." At this point I started to wonder, could my joint failure have anything to do with me being hypothyroid due to being "thyroid-less" after  having had thyroid cancer? Is there a possible link between being  hypothyroid and delayed wound healing? Here is what I found out...

According to a statement issued by Pubmed.Nih.Gov., " in the state of hypothyroidism, a decrease was observed in type IV collagen and hydroxproline  during the proliferative phase of wound healing. This indicated that the state of hypothyroidism constitutes an important factor in delaying wound healing."

Without making this blog too dry and technical, I will now include a few key word definitions which will hopefully help explain why we thyroid cancer and hypothyroid patients have trouble with wound healing.

COLLAGEN: the main structural protein found in the body's connective tissues. Along with being added to almost every OTC beauty cream, ointment, treatment, etc,  collagen has many other important functions, such as providing our skin with structure and strengthening our bones. As a person ages, the body produces less and lower quality collagen.  Interestingly enough, collagen requires ascorbic acid ( Vitamin C) for some of it's stability. 

HYDROXPROLINE: an amino acid that is one of the major components of collagen. It is a diagnostic marker of bone turnover. As an interesting side note, in France, it is being used experimentally in a topical gel called Cicactive for small, superficial wounds. I am not aware of any studies citing the efficacy or success of this treatment. What is known, though, is that collagen is one of the building blocks of connective tissue such as skin, bone and cartilage. ( Cartilage also weakens with age.)  When these tissues are damaged, hydroxproline is necessary to repair the damage.

To summarize, say a person is hypothyroid or has no thyroid due to cancer. That same person has major surgery or unfortunately has an accident - but either way, ends up with a major wound to deal with. Being hypothyroid or thyroid-less makes it more difficult to heal this person's wound. Now what? Is there anything this person can do to aid in the process of wound healing?

YES! We can increase collagen and hydroxproline levels through diet. I am a big fan of using dietary measures to obtain the necessary vitamins and minerals that one needs. I am certainly not against using vitamin and mineral supplements in tablet/capsule forms, but IMHO, if possible, dietary measures are best.  

According to several articles that I have read, including one in the website, Healthline, protein production in the body can be increased by making sure one eats foods rich in: 

* Vitamin C- citrus fruits, strawberries and bell peppers contain large amounts

* Proline- egg whites, dairy products, cabbage, asparagus, and mushrooms are good sources

* Glycine- chicken skin, gelatin, and other protein containing foods

* Copper- organ meats ( yuck), sesame seeds, cocoa powder ( I am on board here!), cashews and lentils

These are four of the nutrients that are helpful in producing collagen. Of course, eating high quality protein will provide the body with the amino acids that it needs.

To summarize, we hypothyroid and thyroid-less patients are sort of in the hole when it comes to wound healing. Eating a healthy diet that contains the above mentioned nutrients can help. Right after my surgery, I craved certain foods that I later learned were good choices for wound healing. I think that it is important to " listen to one's body" for signals as to what foods might help. Of course, I am not sure that my desire for chocolate was entirely driven by my body's need for more protein production. But that is my explanation, and I am sticking to it! 

Dry eyes and thyroid disorders- symptoms, causes, and treatments.

T.E.D. ( thyroid eye disease) includes two major disorders: Graves disease( HYPERthyroidism) and Hashimoto's thyroiditis ( hypothyroidism). I am not going to discuss Graves disease here- which can lead to bulging eyes, as well as extremely dry eyes. And by dry eyes, I am talking about eyes that feel itchy, burning, gritty and may be red and sore. Also included in this line up of dry eye symptoms  are photophobia, blurred vision, eye irritation, as well as excess tearing ( sounds counterintuitive, but it happens). 

Although I do not know of anyone personally that had her/his thyroid disorder diagnosed by the symptom of dry eyes, I read that sometimes persistent dry eyes can lead to the diagnosis of a thyroid disorder. In a nutshell, the thyroid gland and the eye share certain proteins. In Hashimoto's, a person's immune system may attack the eye proteins as well as the thyroid tissue, thus leading to T.E.D.

There are two types of classification of dry eye disorders: tear-deficient dry eye ( impaired or decreased lacrimal gland function)  and evaporative dry eye( one cause of this may be wearing contact lenses). A physician can determine the type of dry eye one has, and suggest the appropriate treatment(s).

Even if one is getting treatment for a thyroid disorder, this will not take care of the dry eye problem. Thyroid disorders and T.E.D.,  although they share a common cause, are separate issues and need to be addressed as such. There are several ways that can help people cope with the dry eye issue. These include:

*use artificial tears frequently ( I have found that the single use, preservative free ones are very handy. I can keep some at home, some in my purse,etc. ) These do not contain preservatives which can cause sensitivity in some people. DO NOT USE drops that " get the red out". These will only make the dryness worse as well as causing irritation in some people. Eye lubricating ointments can be used at bedtime- they cause a slight vision blur, but are generally very soothing.

*do not smoke

*use a humidifier in your home- especially now, since we are using heaters, which will also dry out the eyes.

*purchase Blue Light blocking glasses- they are available in no correction or in several strengths of reading glasses. I have purchased some of these and am wearing them when I use the computer, my phone, or sometimes for reading. I have found that these work pretty well for me. Added bonus: it is supposed to be beneficial for sleep.

* increasing the amount of omega-3 fatty acids in one's diet( salmon, tuna, sardines(!) and  other fatty fish. One can also take fish oil in the form of caplets/capsules. Omega-3 fatty acids will help with blocking inflammation, so this may be helpful.

*there are prescription drops available that help with tear production. I would suggest that a patient speak with their physician to see if this is a good option for them.

* some people find wearing glasses, and not contact lenses, are more comfortable. Again, this is a subject to discuss with your physician.

I found a study involving a clinical trial to determine if there was long term impairment of the lacrimal glands after the administration of large doses of the I-131(RAI). This study was published in The European Journal of Nuclear Medicine Imaging, 2002 November;29(11) 1428-32. It was a relatively small study of only 88 patients, all with a history of receiving a large dose of the I-131 for thyroid cancer. 92% of these patients had at least one test that indicated impaired lacrimal gland function. The study's findings are as stated: " Our findings suggest that in the majority of patients, lacrimal gland function may be permanently impaired after high dose radioiodine therapy. All three layers of the tear film are involved and there is a pronounced long term effect on the tear film stability."

I had suspected that not only could my extreme dry eyes be attributed to my previous Hashimoto's disease, but that it must also  have something to do with the large RAI dose that I received after my thyroid was removed due to papillary with follicular variant thyroid cancer. I have salivary gland issues due to the large dose of RAI that I received. I see an ENT who is a cancer head and neck surgeon and is keeping an eye on one of my salivary glands that is enlarged. My doctor told me that while the RAI primarily affects the thyroid tissue( or thyroid cancer cells in my case), it can also be taken up by cells in the stomach, salivary gland, thymus, nasal mucosa, lacrimal glands, and breast. So, in talking with my physician, and finding this research article, although a small one, stated above, I think that my extremely  dry eyes are ,at least partly, due to a large dose of RAI. 

Do I wish that I had not had the RAI? No, I know that I needed it due to the severity of my thyroid cancer, staging etc. However, I wish that I had not received such a large dose. It has been ten, almost eleven years ago since I received my dose of RAI. I am hopeful that now, with more information about how RAI can also affect other tissues in the body, Radiologists or Oncologists can make a more informed decision about the dosage of RAI .  Perhaps a lower dose can be used- one that will effectively destroy any remaining rogue thyroid cancer cells with less damage to other tissues that might take up the RAI. No pun intended, but hind sight is always 20/20. 

Baby it's cold outside....especially if one does not have a thyroid!

 I am so very cold sensitive- especially this time of year. Why? I know that it has to do with my lack of a thyroid gland. Though I take medication for my " extreme hypothyroidism" as I call it, even the best medicine can not compete with a healthy, functioning thyroid gland. Before I discuss cold sensitivity that affects most thyroid cancer patients, I will provide a quick review of how the thyroid system works. And it is a system of different organs, so part of this concerns those of us  who do not have a thyroid gland.

The thyroid system starts in our brain. The hypothalamus, which is located at the base of the brain, secretes a hormone called thyrotropin releasing hormone. It's friends call it TRH, for short. Friendly TRH travels from the hypothalamus down to see the pituitary gland, which lives about a block away from the hypothalamus. TRH stimulates the pituitary gland to produce TSH. If you are lucky enough to still have a thyroid gland, the TSH enters the blood stream, travels to the thyroid gland and stimulates it to produce T4. Since we are thyroid-less, we still get the T4 ( the inactive form) converted to T3( the active form) thanks to an enzyme called 5-deiodinase. Lucky for us, this enzyme is found in many tissues of the body. Here is an important fact to remember: " By far, most of the T3 in the body is produced from the conversion of T4 to T3 that  takes place outside of the thyroid gland in the body's tissues." Our  T4 comes from our medication, so that the process can be completed. In addition to taking T4, some people also  take T3. It is interesting to note that T3 is approximately four times more active than T4. T3 is in fact, the physiologically active thyroid hormone. However, there is a delicate system of checks and balances. T4 is important because it provides a steady, constant supply of the T3. We need both, in other words. We can depend on our bodies ( thanks to 5-deiodinase) to metabolize our T4 to T3, or in some cases, we need additional supplementation with T3. This is an important subject for one to discuss with one's physician. In my humble opinion, thyroid medication choices should be individualized and no one size fits all.

I have  reviewed how our thyroid system works; remember it is a system so that even though we are thyroid-less we still get to play in the game. I will now  try to explain why the song " Baby it's cold outside" gives us the shivers, in more ways than one. In a study conducted by the Proceedings of the National Academy of Sciences ( PNAS) a previously unknown link was discovered between how thyroid hormone affects the blood vessels, and in turn, body temperature. Before this fact was discovered, and yes it involved mice, the cold sensitivity problem in hypothyroid patients was attributed only to the thyroid hormones overall effect on the metabolism in the cells. It is now known that thyroid hormones can influence how much dilation there is in blood vessels, resulting in how much heat is lost. So, cold sensitivity is a two-fer, involving cell metabolism and the amount of vascular dilation that occurs. 

What do we do with this information? While it was interesting to learn about why hypothyroid patients and patients without a thyroid are more sensitive to environmental temperature, what can we do about decreasing this cold sensitivity?

First, make sure that one is taking the proper medication. Does the dose of T4 ( levothyroxine, Synthroid, Levoxyl and others) need to be increased? Could adding T3 (cytomel) be helpful? There is also the choice of a naturally derived product that contains both T4 and T3. There have been some potency and supply problems with this medication ( Armour thyroid, and others), so please keep that in mind if you and your physician choose this option.  Your physician will do blood work to make sure that several tests are within range. TSH, free T4, T3 and others should be tested. Also, an important factor is how the patient feels. We are not just a set of numbers! How one feels on a certain dose or regiment affects one's quality of life. It is very important to choose a physician who understands this and is willing to " look beyond the numbers". 

Getting enough sleep is so very important, also. When we rest, our body gets a vacation, of sorts. Sometimes if our medication is off, we do not sleep enough and/or get good, restful sleep. According to a study conducted by the Harvard School of medicine, blue light- from computers and even energy efficient lighting, can throw one's circadian rhythm out of order. Sleep will suffer, and worse, excessive exposure to blue light, particularly in the evening( when our bodies should be resting or sleeping) could be a contributing factor in causing  cancer, diabetes, heart disease and obesity. Yikes! Exposure to blue light can suppress melatonin( a hormone that influences our circadian rhythms). I was unaware of this, but fluorescent lights as well as the popular LED lights produce more blue light than conventional lighting.  Even a night light can produce blue light. ( a fact that is particularly upsetting to me!).  Some ways that the Harvard study recommended to protect one from too much blue light include: using dim red lights for night lights(!); avoid looking at computer screens and cell phone screens approximately two to three hours before bedtime; expose yourself to lots of bright light during the day- which according to the study-boosts ones ability to sleep at night along with better mood and alertness during daylight hours; and finally, if one works the night shift, consider purchasing blue light blocking glasses. 

Eating well, taking warm baths, wearing warm clothes, especially when one goes outside, are simple steps that one can take to help with cold sensitivity. 

I have noticed that I am more sensitive to cold in the evenings. It may have something to do with the metabolism of my medications, perhaps that my pain threshold seems to be lower in the evenings, or something to do with my immune system. I am not sure exactly why this is the case, but in talking with other hypothyroid/thyroid cancer patients, several people feel more cold sensitive in the evenings as well. I could not find any studies on this, but there is probably one out there somewhere.

So, during this winter season, I hope that everyone, especially those of us without a thyroid, can stay as warm as possible. A friend of mine has recently switched to wearing all wool clothes this winter. She has wool dresses, leggings, sweaters, ponchos, even a pair of wool underwear. I think she may be on to something. I now have a wool hat and sweater. More to come, I hope...