Monday, September 8, 2014

one size fits all?? no, i do not think so!!

i have been upset about the "endocrinologist" bashing that has been going on by one well known thyroid patient advocate, and i find that i must put my two cents in on this subject. i will say upfront, that i admire this patient advocate, and appreciate her efforts on behalf of all of the thyroid patients out there. we have not had a voice, and it continues to be a struggle getting people to understand what thyroid/thyroid cancer patients are dealing with. it has also been a struggle getting competent patient care. i am disappointed in her opinion( which counts for a lot- and influences many people) that ALL endocrinologists are incompetent, uncaring physicians who look only at lab values and are not concerned with doing what is best for their patients.

i am going to  relate my personal story about what i had to do to receive good patient care. i also would like to say that in my pharmacy practice, i talk to many people who have thyroid and thyroid cancer issues. some see endocrinologists, some see their primary care physicians,etc. but i would never suggest that they see ONLY an endocrinologist, if they feel that they are well and getting good patient care. this is a personal issue- and ONE SIZE DEFINITELY DOES NOT FIT ALL!! - in this situation. if a patient is unhappy with the care, or lack of, they are receiving for their thyroid issues, i will definitely suggest that they seek out a second, third, or even fourth opinion. i encourage everyone to be their OWN patient advocate. it is hard work, it is not easy- you  have to stand up for yourself, or make someone angry, but it is your life or the quality of your life that is at stake here. o.k., that said, on to my story....

about 5 years ago, i was seeing an endocrinologist in western north carolina. he was personally a nice man, but he did not take my concerns seriously. he told me that i was just " stressed" and that was the reason i was feeling so extremely tired, weak, forgetful,etc, all of the time. i tried another physician in this practice, and was basically told the same thing. so once every year, i would go back and be told, after blood work and an exam, that even though my blood work was " strange", it was because my life was so stressful ( stressful job, and i was taking care of my mother, who was dying of cancer). this went on, unfortunately, for about 5 years. i wish that i could tell you what event made me decide to get another opinion. it may have been the death of my mother, and the realization that life is short, and we should do our best to take care of ourselves . i love my family, and i want to be there for them. so whatever it was that finally moved me out of my stupor, or denial, i searched a website, ironically from the same patient advocate that i am upset with, and found a physician. i found another ENDOCRINOLOGIST. but this person was in a city four and a half hours away. this physician had many reviews that said things like, " this doctor listens to how i am feeling."  or " this doctor does NOT go by tsh or other blood values alone, but takes into account how i am doing when she prescribes my medication".

long story short, you can read my entire blog for the whole story, my new doctor ordered tests and did a biopsy. it was discovered that i had stage three, papillary cancer with follicular variant, which had spread to my lymphatic system and to two of my parathyroids. my surgery lasted almost 5 hours and was one of the most difficult ones my surgeon, who is head of the cancer department at the large hospital that i went to, had ever done.( his words- in his surgery notes) . there is no doubt in my mind that if i had continued to go to my old doctor, that i would not be here today! my endocrinologist is a caring physician, who prescribes my medication based on HOW I AM FEELING, but of course, also with my lab work in mind. i am a four year survivor as of this year. i still have to go back every six months for an ultrasound and blood work because my doctor said that my cancer was aggressive, and the risk of recurrence does not go away after five years or whatever, but could come back at any time. the testing is stressful, but i am happy that i go to a physician who truly cares about me and the care that i receive. does that mean that i will unquestionably accept everything that she says? not a chance! we " negotiate" my medication dosage on a regular basis. i respect her opinion, and she respects how i am feeling. we usually come up with a solution that is good for us both. even when you find the right doctor, you still have to be your own best patient advocate!

so my final point, and then i will get off of my soap box, is that endocrinologists can be an excellent   choice for thyroid patients. these doctors primarily  deal with thyroid and diabetes patients. that is what they specialize in. for me, it is a good choice, even though i had to go through a few to find the physician who was right for me. i think that if a patient is satisfied with a doctor, who is NOT  an endocrinologist, then, great! just be sure that as a patient, you are receiving good care and that your physician takes into account how you are feeling and not just the lab values. so, do i believe that one size fits all? ABSOLUTELY NOT!!

Wednesday, September 3, 2014

it's just a pain in the neck, you know?

today, i went to my first physical therapy session for the pain in my neck and headaches that i have been having. i tried ibuprofen, a new pillow( always contour- better for your neck), and ice packs. then i was in so much pain that i tried the last resort- i went to my doctor, lol. i was pretty sure that what had caused this neck pain/headaches is  the fact that i am on the phone a LOT for my job, and we do not have headsets. we did not even have the neck rests that attach to the phone until a couple of weeks ago- i bought those myself. it helped a little, but i realized that i needed more help. so my doctor sent me on to physical therapy, which i like WAY better than pain medicine. but  that is another blog, so i will move on.

i first had to fill out a pretty extensive medical history. first  question: what activity makes your neck pain worse? my actual answer: going to work. next question: what activity makes your neck pain better? also my actual answer: getting off work. i also drew a smiley face here. despite this, my physical therapist took my situation seriously, thank goodness, and had some very interesting insights. first of all, he said that all the people who work at his office ( at the desk)  have headsets regardless of whether they have neck pain or not. so he said that he hoped that my employer would come through with a headset for me( it is still in the review process). in my medical  history, i mentioned my thyroid cancer surgery and the radioactive " chemo" that i received( a very big dose, by the way). the physical therapist said that he really thought that my neck issues had occurred from the surgery( who knows what is missing, besides my thyroid, 2 parathyroids, and 11 lymph nodes) AND the radioactive I-131. the I-131 damages the tissues and muscles, which i did not know until today, but i guess i should have guessed that it could do that. 

the therapist said that i have neck issues from the surgery and treatment that have gone unaddressed ( his exact words) since my surgery in 2010! the phone situation  at work just precipitated an already existing condition. so, what i want everyone to know who might read this blog, is to  take care of your neck! if you have on going neck pain and headaches, one or both, you should see your doctor! ask your doctor to write an order for you to receive  physical therapy. my therapist used traction on my neck today. i will not lie to you, it was not comfortable( it looked like an instrument of torture). but when i finished with the 15 minutes or so of traction on a low setting, i had a little better range of motion in my neck. he showed me some exercises to do at home, also. i think that i will see improvement ( i sure hope, that is) in about 4 to 5 weeks of physical therapy. after that, it is up to me to keep up with the exercises, and of course pray for a headset! 

sometimes i am surprised at what all thyroid cancer patients have to deal with! no, it is not the good cancer at all! there are unexpected health issues that are not always addressed, or even recognized, by our doctors or ourselves. we have to be our own patient advocate, as i have said before. you have to stand up for yourself, and for the good patient care that we all deserve. i sincerely  hope that  this helps someone, and i will certainly keep everyone informed about my " neck progress". oh, i did get great news today. i can go back to zumba class- i just have to avoid any " neck moves". the physical therapist said i should just maybe " wave my arms around" during those parts. ha,ha,ha- do you think that he has ever been to a zumba class???? :D