Wednesday, May 22, 2013

" and here is your heart, tinman, though since a heart can be broken, i am not sure why you would want one . as for you, scarecrow, i give you a college degree to prove your superior intelligence. cowardly lion, since you are not cowardly anymore, here is a metal for heroic service in the line of duty. and dorothy, what can i get for you? oh, wizard, i do not think that there is anything in that bag for me. why is that ? well, what i want is a THYROID REPLACEMENT DRUG that will work well, is cost effective and i am not allergic to." my apologies to dialogue that may or may not have been borrowed from the " wizard of oz"

i felt that i had to address the issue of thyroid replacement drugs, and all of the concerns, issues, etc, associated with them now. this is my job afterall, and moreover, it is a personal issue to me. i do not like all the hype surrounding the brand name drug, synthroid. i do not like to see any prescription drug advertised on television or in magazines. this is confusing to the patient, i think, and more times than you would think, people assume  that they can purchase these prescription products without a prescription.

i will discuss, and this is my opinion- based on my knowledge and experience- some personal, the different choices( or lack thereof) we thyroid patients now have when choosing a thyroid replacement drug. patients need to be informed about the different choices, and discuss this with their health care provider. only then can one hope to pick the right one. this process may be a sort of trial and error one. the patient/doctor may choose one, do lab work after a certain amount of time, and then decide to stay the course, or choose another drug if necessary.

i will just use myself, supplementing with patients, family and friends- who shall remain nameless- as examples. first off, i do not like generic ( levothyroxine) . too many patients of mine have said that generics did not work well for them. a relative of mine, who was using generic, had her tsh climb to 40 before she realized, whoops, time to change her medication. now, a lot of people do take generics, and there is a cost saving, if they work, to these.

i used to take armour thyroid supplement. i did pretty well on it, but several years ago they reformulated it. after a few months on the new formula, i did not feel very well and my tsh started to climb. i stopped this and started brand name synthroid. brand name synthroid contains sulfite preservatives. 1 out of 100 people in this country ( according to the allergy website i visited called " about") are sensitive to sulfites. that can mean  stomach upset, nausea, diarrhea, etc. i unfortunately have anaphylactic shock when i ingest sulfites. the allergy website listed synthroid as containing sulfites. i called the company to determine if this was indeed true, and they would not confirm or deny it. this was proof to me that the website was probably correct, and synthroid does contain sulfite preservatives. it is also an expensive drug, and there is that whole " television promotion by a celebrity" thing.

then, my endo prescribed levoxyl after i researched it and found out that there were no preservatives added to this drug. it was relatively inexpensive and worked well ( for me)  up to now. levoxyl has been taken off the market ( some people, including my endo, believe that it will not be coming back) because of a potency issue. the official line from the manufacturer of levoxyl is that they " can not guarantee the stability of the drug up to the expiration date". i am just guessing that if it were to come back, the company would add preservatives, but of course i have no knowledge one way or the other if it will come back.

decisions, decisions. since i have the whole sulfite preservative thing to consider,  on top of everything else, i have called my endo and requested that she change me to a drug called Tirosint. i called the company( one of the perks of my job- i can play the pharmacist card) and asked them if they added sulfite preservatives to Tirosint. they said no- no sulfites or any other preservatives in this drug. i asked for it in writing, which they faxed to me.( i tend to be somewhat mistrustful, after having experienced many anaphylactic reactions in the past.). besides being preservative free, you can drink your coffee or tea immediately after taking Tirosint. of course, you would still want to wait 30-60 minutes before eating. the downside of this drug is the price. it is expensive, and i do not know yet what my co-pay will be, but i am sure it will NOT  be $4.00.  i also have no idea how it will effect my tsh, or other thyroid function indicator  blood levels. being a thyroid cancer patient, i sure do not want any stimulation of any thyroid cancer cells which may be lurking around somewhere in my body. having a near zero tsh is important- crucial- to me. i will go back for blood work, if my endo approves the switch, after a month or so.

i will let everyone know how this works out for me. there are some other natural thyroid supplements out there, as well as cytomel- which is just a t3 supplement.( you need either t4 or a combo of t4 & t3 for your thyroid/ body to be happy.)  i did not discuss them, but they are viable choices as well. i am interested as to what people who were previously on levoxyl, are taking now. feel free to tell me about your " thyroid replacement drug"- if you are happy with the switch, and how you are feeling. i know that we are all different- there is no perfect one drug for everyone. i hope this info has helped you and your doctor make a decision as to what drug may work best for you.short of a trip  to the emerald city, just make your best guess and be prepared to try again. good luck to all.

Monday, May 13, 2013

" there's a dark and a troubled side of life. there's a bright and a sunny side,too. though we meet with the darkness and strife, the sunny side we also may view. keep on the sunny side, always on the sunny side. keep on the sunny side of life. it will help us every day, it will brighten all the way, if we keep on the sunny side of life.. " keep on the sunny side - the carter family

if you can find a way to " keep on the sunny side of life" then it is a win-win for you. and this goes for everyone- not just thyroid cancer survivors. i tend to be a pollyanna type of person overall. not to say that i have not cried me a river over "thyroid cancer" stuff, but generally i feel sorry for myself for a couple of days, then move on. as i have said in the past, my job, where i see all sorts of cancer patients, sort of keeps me grounded. as bad as you feel, there is always someone who is dealing with problems that are way worse than yours.

i am proud to announce that on may 19th( this coming sunday) i will be a three year cancer survivor! yeah! last year i was working on that day. this year i will be visiting with my daughter and son-in-law for the weekend. we plan on going to her zumba class that saturday, and of course, some retail therapy afterwards. i am trying to get back to regular  zumba classes. i have been going  sporadically, but seem to keep having knee problems.(yes, i know that zumba is not the greatest thing for your knees). i have modified my moves a little- don't worry, i can still shake my belly skirt( no knees involved here)- in hopes that i will not re-injure my knee. for me, zumba is a stress reliever and it makes me happy. i know that for some people, it is running, yoga, swimming,etc. that works as a stress reliever. whatever makes you happy and helps keep you fit is so important. some people say that they just do not have time, but if you do not take care of yourself now, you will be in trouble later. and again, in my work,  i see too many people who have neglected their good health in the past, and are paying for it now.

this weekend, i had the pleasure of meeting another thyroid cancer survivor. she is a woman, about my age, who had to have two surgeries on her neck within about a ten day time frame. she says that she should have gotten a second opining before beginning her " thyroid cancer journey", but did not. i told her that you just have to make tough decisions sometimes and go with them. what is past is past, and there is no where to go now but the future. i recommended some books, websites,etc, for her, and sincerely hope that she can make future decisions about her health care that will be better for her. i really hate that things have been so difficult for her, but i am hopeful that going forward, things will be better. i suppose  that this is" keeping on the sunny side of life". it is impossible not to rehash the past, and wish that you had done some things differently, but it really does not help. unless of course you are offering up advice that might help another person make a decision about their health care.

that is one of the reasons for me  writing this blog. it helps me to express what i have been going through, and i sincerely hope that my experiences can help someone else who is dealing with thyroid cancer. it is important to know that we, thyroid cancer patients, are not alone and there is help and information out there! so learn from others( even their mistakes), exercise to keep your mind and body healthy, and try to keep on the sunny side. a good sense of humor always helps - whatever might come your way.