How far should we be monitored?: #2 Bloodwork

After going through the laundry list of side-effects, a lot of stuff that are just immediate and short term can easily be crossed out. But there are still some pretty big things on the list, where a little follow-up could go a long way in improving how we feel.

I've done a lot of thinking over the past few days of why we don't present every symptom to doctors, and why its so frustrating to learn about things from other people w/ the same experiences. For me personally, the biggest issue has actually been an age thing. We are brought up with the common knowledge that between 20-27ish, everything changes, body wise. You slow down, you gain weight, your brain slows, metabolism changes, you find yourself getting... well, old. So if you are diagnosed at 21 w/ cancer, how do you tell the difference? And that's where I think that doctors should really step in, especially with young adults who don't have a clue about how their bodies will age. And I think doing blood work may be one of the easiest ways to make sure that things are in check and balanced.

We already have to do blood work on a regular basis as it is. TSH, T4, Thyroglobulin. But has your doctor ever tested you for any of the deficiencies that are associated w/ losing your thyroid? What about for the anemia or leukemia that has been associated w/ I-131?

T3 and T4 testing:

Most of us are on something like levoxyl or synthroid, which are T4 replacements. If you've done the slightest bit of research into medications, you probably have also heard of Armour, which is a natural T3 and T4 replacement, or you've heard of people who use a combination T4 w/ cytomel (t3). Personally, I'm a big chicken. I've heard so many conflicting sides to whether its worth using both, and then hearing about how hard it is to regulate levels on Armour, its hard to tell what to do w/ out some solid medical evidence that it would be good for me to do both.

Test: From what I've gathered, most blood work tests for thyroid hormone totals in the blood. But some hormones can be bound and unusable. So the recommendation is to test for free T3 and free T4. In case of things like, your body has trouble converting T4 to T3. I never knew this, but can guarantee it will be one of the big things on my list of things to ask about in the near and dear future.

Vitamin D:

This is absolutely huge right now, and not just for thyroid patients. Everyone is talking about vitamin D deficiencies. And apparently its something that requires more than just standing outside for 15 minutes every day. I just had to do blood work yesterday concerning my mysterious rash (don't get me started), and while we were at it, she said she wanted to run the gamit of blood work, check my thyroid levels, and I asked if she could do vitamin D. Its been on my mind; and to my surprise she agreed %100. She confirmed that she'd been seeing a lot of thyroid patients with D levels of 4 when they should be 30. And it was comforting to talk to her about the the testing because I saw that she had that familiar scar. So suddenly we were on equal playing fields; she knew my concerns as more than a doctor, and she fully understood the issues of deciding what was life changes vs. medical issues that needed to to be talked about.

Calcium:

I remember when I first had surgery, they put me on calcium pills for a while. But after that, nothing. Does anyone out there regularly get their calcium tested? Or is this just if they think that your parathyroids may have been damaged?

Anemia:

I only recently learned that I-131 can in fact cause anemia. Its also one of the things they are running for me. I thought this just happened if you didn't eat enough iron and protein. Girls have a harder time with it. Etc. Because it is something that tends to be so common, outside of thyroid problems, why isn't it just a normal part of blood tests?

Leukemia:

This is the last major thing that comes to my mind when we talk about post treatment blood work. I don't have a clue what I would look for if I were worried about leukemia, or any other new possible cancers. From what I can tell the symptoms are like being hypo, or being generally really run down. If there is anyone out there who has had this experience, I ask that you share. I don't think I've found anyone online who talks about this particular side-effect, how it was diagnosed, follow-up or anything like that.

I'm sorry this turned out to be a little more theoretical than I had originally intended. I know I asked more questions than I wanted; but that's why I'm writing on the topic. Is it crazy to want the doctors to run all these tests on your blood? Would it make life a lot easier if they could medically tell me that there is a reason I don't feel 100%? Can we as patients be trusted to truly evaluate how our bodies feel?

I was thinking maybe a chart would be useful for bloodwork. I remember calcium and leukemia being short term concerns. Having a chart that you can look at and say, ok, for the next 2 months I should get these tests, or be aware of these symptoms. It's simple, its basic, its a little piece of mind. A lot of doctors tell patients to keep journals of their blood levels, but rarely give you the exact numbers for every single test. Wouldn't it be even easier to just have something pre-set up to print out, and plug numbers in. It could be something the doctor provides, or even Thyca. A list of things that are generally tested, and what amounts they should be in, and then empty blocks to write your own numbers in. Again, it sounds so stupidly easy. And like its something that I should have done all along. But if there were such a document that were universal, that contained EVERYTHING doctors should be monitoring, I can only imagine that that might start standardizing levels of care. Imagine that, every doctor performing the same tests.

How far should we be monitored?: #1 the side-effects we know?

Ok, so here it is. Probably the most research I've put into a post, rather than me just talking from my gut. This is going to be a multi-post topic, I don't know how many post just yet, but if you have had something that might be considered a side-effect, let me know and I'll dig up whatever else I can find. I also think it is important stuff for us to think about right now when lots of questions are flying around concerning the cost of healthcare and the idea of nationalizing healthcare; this will also tie in with advocacy and screening campaigns. Are we taking too many unnecessary tests? Or not enough? What costs more, preemptive screening, or finding a disease down the road? Should treatment just be limited to the disease; or should it be expanded to treat the side-effects of the treatment?

One of the biggest things I've notice when talking to other people about having cancer, is after a while, everyone has a similar type of question, "hey... have you had x start happening to you? Do you think it could be a side-effect?" The fact is, no one seems to actually know what they should count as a side-effect of cancer or cancer treatment v. a side-effect of life in general. And yeah, I'm definitely included in this group. I don't want to be a hypochondriac, paranoid every time I think something is off. But at the same time, being a run down law student, I know that I probably pass off far too many things as just being a part of my everyday life. It isn't comfortable to report every little thing to the doctor.

The goal of these posts is is to first, try to identify the side-effects of having thyroid cancer, be it from surgery or I-131. Then in following posts, I want to look at those side-effects and try and figure out if they are things we should have doctors monitor. Its sort of a proactive list; something to make me feel less crazy about my side-effects, but also something I can print up, take with me to the doctor and be like, "look I'm having issues, I've found other people w/ my same issues, maybe this is something we should check out... Or maybe there is a giant research grant in it for you for identifying something that no one usually notices." And I don't want to say this will make you an expert, and I don't want to become one of those patients who claims to know more than the doctors, but I like the idea of knowing, hey my TSH is normal but I still feel hypo, maybe my Vitamin D is off?

This is a list of side effects compiled for just a general google search for "side effects of I-131"... I don't repeat things already said... but with that said, you would be shocked to see how limited most of the lists are, and how many just copy and paste paragraphs from one another. The legal side of me cringes. If you learn nothing else, it needs to be that you should seriously run through these things with your doctor, and take internet knowledge with a grain of salt.

These symptoms are from: MedicineNet.com
*suppression of bone marrow, resulting in anemia
*acute leukemia
*reduction in red blood cells and platelets
*Radiation sickness, including:
*nausea
*vomiting
*chest pain
*increased heart rate
*itchy skin
*rash
*hives
*Thyroid crisis (what on earth is thyroid crisis?)
*Inflammation of salivary glands
*Chromosomal Abnormalities (WTF, what does that even mean?)
*death
* 3 days post treatment:
*neck tenderness and swelling
*pain w/ swallowing
*sore throat
*cough
*About 3 months post treatment:
*Hair thinning

RadiologyInfo
*Thyroid hormone pills every day
*"There are essentially no other permanent side effects from the procedure." (HAHAHAHAHAHAAHAHAHAHAHAHAAHA)


Women & Cancer Magazine
*allergic like reactions
*loss of taste
*increased risk of developing secondary malignancy (somewhere else, I've read that post thyca is a significant increase of then specifically getting melanoma)

Care First Blue Cross Blue Sheild
*Changes in weight
*excessive sweating or intolerance to heat
*feeling depressed
*unusually tired or weak

Side Effects of High Dose Radioactive Iodine for Ablation or Treatment of Differentiated Thyroid Carcinoma
*Ok, for this one you should just click the link and read what it says. Its probably the most comprehensive listing of side effects, even has charts and things, and descriptions... its only a few pages, and goes over in detail a lot of things already said, I'll point out some important ones
* Larcamal Glands, aka dry eyes/tear ducts sort dry up (which actually results in watery eyes)

Other side-effects of losing your thyroid; this list is mainly composed of things I've learned at thyca support meetings and conerences, along with reading a lot of discussion on facebook and PlanetCancer.
* memory loss
* hypothyoidism
* prone to getting sicker (not so much sick more often, just worse when you do get sick)
* calcium deficiencies
* damaged vocal nerves
* damaged parathyroids
* Vitamin D deficiency
* Sex drive mood swings
* Irregular periods
* Early menopause

And I think that covers more or less the entire gamit of things. For the next few posts, I essentially plan on tackling these things like a hypochondriac. I acknowledge now, not everything I'm going to suggest is necessarily feasible. Its more of, "in an ideal world where all health coverage were free, and ensuring good health and quality of life where the most important thing..." So chime in if you have something to add, and as we go through I'd also really like to hear from non-thyca patients about why you think doctors should be monitoring.

I am NOT a Vampire

That's what my mom has been accusing me of lately. Vampirism. I just can't seem to get a tan.

It has always been a basic rule of thumb that come summer time... I get dark. I've got a a whole whopping 1/8 Native American that combats with my predominantly Irish/northern European genes, and it causes me to turn nice brown. I recently came across a lot of old pictures of me and my darkness that only comes along in summer. Back in the day (before people living on the beach allowed things like skin cancer actually affect our daily activities), mom and I would compete on who could get darker, with my grandmother usually crushing us.

But something very strange happened... I don't really tan anymore. In fact even for me to get really sunburned, I need to be outside for multiple hours w/out sunscreen. Or I will get real dark, and it fades in a day or so. Its sort of freakish, and makes me look all pale and sickly all the time. Hence, vampire.

And then last year, as I was prepping for dosimetery (one day I will look up the actual spelling), I read the laundry lists of I-131 side-effects, and what would you know, it can apparently affect your ability to tan.

So that there is your random tid bit of the day about weird side effects of I-131.

What do you remember?

It is a little known fact that I don't remember the summer after my first year of law school. This isn't much of an exaggeration. The year after my thyroidectomy, I had a neck dissection, and I can't tell you what I did.

The first time I experienced issues with my memory and thought process in general was a week after my thyroid came out. Being me, I only took a week off from school... I mean, I was graduating in a couple months, I wasn't about to put my life on hold. And being fairly confident about being fairly smart, I went and wrote a paper, even after my prof. told me I could wait. I couldn't make things make sense. I met with my prof. we both looked at it, and I bluntly said that I couldn't understand what it was supposed to be about. This was terrifying, and demoralizing.

And then, a few months later, I went to law school. There's a part of me that just attributed how much trouble I've had in law school to the fact that, well, its law school. But some things have been seriously noticeable. I can't read as fast. I can't remember everything I read. I have a hard time connecting some ideas without writing them out first, and even then my ideas have never been the same as they were. Its hard to explain. And then after a year, someone is giving a lecture and they told my support group about how losing your thyroid, or being hypothyroid affects memory... and suddenly, it isn't just you.

I've been reading stuff on Cancer Planet (see link on the side bar)... and it sounds like memory and intelligence issues is nothing new to cancer patients. I feel like things have gotten a lot better, but aren't where they were. Does anyone out there, who have gotten over treatment stages feel like things have gotten better for you? It would be something good to know.

Preemptive fear

So my eye surgery is going to be on Wednesday. And what I wouldn't tell anyone around me is that as usual, it scares the begeebees out of me. That's right, 3 surgeries in 4 years and they still scare the begeebees out of me. First there's the superficial fears about how the surgery will go. What if it doesn't work? What if I'm stuck in a state of teary eyes for the rest of my life? What if the scar doesn't heal right? How much is this going to age me? What if i can't cover it up? I'm going to be a freak scar faced individual.

Well then maybe I'm overreacting to the whole thing. Maybe i don't really need surgery. Maybe this really is bearable. But then again I was at an advisory board meeting yesterday and trying to schmooze and talk to board members, powerful people who want to do things like, take my resume, and b/c of a combination of walking there in the cold, and throwing on enough make-up to hide that I'm in the middle of exam season, my eyes were basically balling excessively, and the only excuse to fall back on was contact problems... an incredibly bold faced lie, but one i use so often, that sometimes I even say it when I'm wearing my glasses.

Then next logical question is whether or not I'm doing enough. I'm only getting my right eye done, but the left eye has been getting worse... I don't want to do this twice. Sure it isn't as bad as the right eye, but there's still big gopy tears that stream down from it from time to time. So it isn't blocked? You still call a plumber when you you have a slow drain b/c you know eventually the water just isn't going to go down.

There's the irrational fears too. More along the what if side of things. What if something goes wrong during surgery? What if I have a bad reaction to the anestetic? My mom is allergic to anesthesia. What if i can't bounce back right away? Every time i do surgery i feel like a part of my brain dies... i feel forgetful... Thought its probably just in my head (pun not intended).

All of this is frustrating. I was stupid to schedule this now... but when else would i do it? really? Side effects suck. I just want to get back as close to normal, or where i should be, than before the cancer came and started screwing around with my life. These little, seemingly insignificant side effects, really aren't that at all. They are inconvenient annoyances. Permanent reminders of what has happened. And often it is the smallest of these things that is the straw that will break the camel's back.

I'm not particularly smart or talented or motivated at anything. And in that way, I have a lot of normal things working against me, the same obstacles as every other normal person. Its times like now where I feel like the only people that should get cancer (not that anyone should get cancer) should be people a lot stronger than someone like me. Someone that has more going for them so that they can make this their big challenge to overcome. Because if you are just sort of all around mediocre to begin with, how can you really do well? I'm babbling... so I'll stop now.

Some people live under the gun, i live under the knife

There's a problem that runs in my family. People have a tendency to like to be sick, or a need to go into surgery, or something like that. I read up on this a while back ago... about how a lot of people feel the need for surgery as a way of getting attention, sympathy, etc. I didn't even tell most of my friends i was getting surgery. The story goes, my parents came home while i was in the hospital and my roommate didn't even know why they were there... this is why you should read e-mails from your friends... on occasion they have important information... I also hate sympathy, doctors treat me a lot like I'm glass... I hate being hugged. I mean arbitrary hugs... hugs where people just walk through the motions... or worse expect me to. There's very few people i hug with meaning... saying goodbye, or to maybe someone i love I'll hug tightly out of fear it'll be the last chance I'll have to do so. Basically the point is i don't like the attention... Nor am i particular fan to pain... and I really don't like painkillers... most don't work for me... vicadin makes me puke... codeine has no effect... I'm not doing it for the high.

So why all the fuss about "another surgery"? Didn't I say recently that I got my first clean bill of health? (if i didn't, i apologize... i did get a clean bill of health for the first time in 4 years)... no, now I'm trying to fix all the things that got broken. December 10th will be my 4th surgery. This time around it is to fix my tear duct... or to be more precise, my tear drain. I have watery eyes. Not just a little watery... but rather the kind of watery where I'll be doing absolutely nothing and a tear will just slide down my face. Its mainly my right eye... though the left wells up in the cold from time to time. It started in Feb. 2006. I got it checked out... they said it was from wearing my contacts too much and it was just a case of dry eye. Yes, dry watery eyes. The way the explained it was that certain glands dried up from my contacts and they had enzymes that moisten the eye, so the eye thought it was dry no matter how wet it got. so they had me microwave a sock full of rice and put it on my eyes for 10 minutes twice a day. I wish I were joking.

The annoying issues came first. Constantly being in a state of tears is a little overwhelming. And oh the people who try to hug you, ask if everything is ok... But nothing is wrong... of course after a while you can use it to hide when you might actually be tearing up. For me the hard part is the fact that I'm a law student. I stand up and i talk, and argue, and do things in front of people all the time. When i get nervous, you better believe the tears well up. Nothing is worse being mid competition or a job interview with tears running down your face.

And they aren't real tears. I've done my fair share of crying over the past few years, and I've found that when i really cry, my tears are saltier. This is just water coming out with only a hint of salt.

The second issue, the far more serious issue, are the physical effects. In the past year the tears got to the point of not just being a moist eye but being full blown tears that roll down your cheeks all the time. You are always touching your eyes. They get minor infections. Eyes get crusty at night, sort of mucousy for a week... i can't tell you how many times i went to the doctor thinking i had pink eye. And then my contacts started getting blurry, and fall out a lot... which is annoying and a health issue. So i decided something needed done.

By this point I had heard that a lot of people who get I-131 treatment have problems w/ their tear ducts. And my doctor recommended me to someone deals with this kind of case regularly.

I got poked and prodded. They actually stuck needles in my eyes (like that rhyme... cross my heart hope to die stick a needle in my eye-- I'm so using this on my kids... and tell them i lied once and got 3 needles in the eyes)... ok so they weren't exactly needles... they were syringe needles... and it wasn't exactly my eye... but the little tear ducts in the corners... they stuck the needle in the hole in tried to inject them with water. this is easily the most weird feeling on the planet... and even worse when you feel the liquid go in, get blocked, and spurt out again... that's just weird.

And so now... yet another surgery. heh... and another scar. They'll make an incision under my eye and stick in a new drainage tube between my tear duct and nose... which they'll have to break some bone to do. i can only hope that this works... I feel a lot like I'm working on picking up the pieces left over from being sick, and trying to stick them all back in place again... stopping the tears would be surprisingly big.