Tuesday, August 4, 2009

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.


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?


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?


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.


Megan said...

I found your blog through DearThyroid. You bring up some excellent points. I don't have my calcium or iron level tested regularly. My Endo mentioned the leukemia risk to me but I am not positive that I'm being monitored for it. I post this comment as I'm about to have a scanning dose of 131 this morning so it's definitely a concern.

robs said...

Thanks for your comment! It's good to know I'm not the only one questioning this stuff! Best of luck w/ your scan!