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.