Posts Tagged ‘ thyroid ’

It’s just never-ending! 21 May 2008 at 4:55 pm by Jason 147 views

New info. Went through the scan today, the Radiology dept was confused why I’d be scheduled again, but if the doc says do it, they do it. Keep in mind it usually works like:

  1. Take 5 milicurries of I131
  2. Wait a week
  3. Get a scan.

I did this last week, and while the results were good, the doc wanted me to do it again, only this time he ordered me to take a larger dose of radiation (159 milicurries) to burn off any thyroid tissue that the blood work (not the scan) showed may still be in my body. That’s over 30x the amount of radiation I’d normally have prior to doing a scan (not counting any leftover from the original 5). So, I did what he asked:

  1. I took 159 milicurries of I131
  2. Waited a week
  3. Got a scan (today).

Guess what? I get home and there is a message to call the Radiology department.  So I give a call and what did they tell me?  Well, I still have so much radiation in my body, they can’t see anything clearly on the scan. That’s right… today was worthless, so they need me to wait another week for it to clear out some more to see if they can get a clearer pic. Sigh. My day went from “Thank God, it’s over!” to “Wonderful, another week (at least) off my meds.”  Oh, did I mention they’re doing construction on the hospital and with 2 min left of my scan the power cut out?  Yeah, had to do it twice today because they have no backup generator or UPS in that department yet.

It started with 27 days off. As of today I’ve been off 36, and now by the next scan it’ll have been 42. What happens if the scan still isn’t clear? If you guessed “wait another week,” then ding ding ding, we have a winner… at least according to the tech I talked to (she suggested I call my doc, but all of them are out today, so I have to call tomorrow).  Seriously, I’m just so upset.  :(

Okay, that’s all for now… I’m so over this.  The constant taking days off (bye, bye, vacation time!  I didn’t need you!), the feeling like crap, everything.  I’m just over it.  The new Indiana Jones movie comes out tonight, and I bought tickets way in advance to the midnight showing and now since I’ve been off my meds for so long (and because I have to go in to work tomorrow) I’m not sure if I should attempt to go.  Argh!  We even are now talking about the trip to Denver we’ve had planned for months because at this rate I will have only been on my meds for a few weeks.  Hell, Jess has already had to alter whatever she had planned for my birthday because of all this nonsense.

Okay, I need to end this post because I’m too “ranty” right now and I need to figure out what I’m going to do tonight.  Ugh!



+ Day 34 and counting… By Jason 19 May 2008 at 11:39 am 253 views 4 Comments

It’s day 34 of my “treatment” or “going Hypo” or whatever you want to call it. What was originally supposed to last 27 days has turned into a miracle of suffering as it turns out my blood work showed signs of Thyroid tissue somewhere in my body and I had to take a big dose of RAI 131.

So, for future reference (and anyone out there wanting to know what I’ve been dealing with), here’s a list of symptoms I can’t seem to shake:

Pre-Radioactive Iodine, no Levothyroxine (Synthroid/Levothroid) - Days 1 - 27

  • Weight Gain (about 1/2 lb a day… as of today I’ve gone from 162 lbs to 178… joy)
  • Weak muscles (1 hour of walking feels like 5 hours of running)
  • Mood swings (I go from zero to upset in about 3 seconds)
  • Depression (I feel miserable about everything)
  • Cold (it’s been in the 80s and my Winter Coat is my best friend)
  • Dry skin (no amount of lotion can seem to save my hands/elbows)
  • No energy (it has taken me 2 days to write this one post)
  • Severe boredom (nothing seems to be able to entertain me)
  • No reaction time (I can’t drive, and even video games can’t be played unless I wanna lose)
  • Jumbled thoughts/memories (I can’t remember anything or think straight)
  • Double vision (reading or anything else up close causes double vision after about 30 min)
  • Poor sleep (tossing, turning, vivid dreams, waking up constantly)
  • Numbness (randomly, almost, my hands/feet tingle like they’re numb)
  • Dry, poofy, red eyes and pale skin (apparently it looks like I have the plague, or so I’m treated by everyone)
  • Hair thinning/loss (I used to have thick hair, it’s gotten pretty thin and wispy)

Post-Radioactive Iodine, no Levothyroxine (Synthroid/Levothroid) - Days 27 - 36 (or whenever it ends)

  • Everything from above (just worse from the amount of time)
  • Constant nausea (I have yet to figure out how to help this)
  • Loss of taste (my tastebuds seem to pick up less each day)

I’m sure there’s more, I just can’t think of them at the moment. It all really sucks, and I guess I want people aware that if you have a co-worker or family member going through this, it is really awful. People seem to just act like “Well, you’re sick, get well soon” or tell you that it’s just like something they’ve gone through (then mention “quitting smoking” or that time they “sprained their ankle.” No, it’s not like that at all, thanks).

Just bugs me a lot, and I know a ton of it comes from my mood swings, but instead of being treated as if I’m a pain in the butt because I have to go to doc appointments, why don’t you treat me like the many pregnant women that have just as many to go to? RAI symptoms mimic a lot of pregnancy symptoms… let’s compare:

Pregnancy: Inability to lift heavy objects (don’t wanna hurt the baby)
Gone hypo: Inability to lift heavy objects (weak/sore muscles)

Pregnancy: Inability to think straight (Pregnancy Brain)
Gone hypo: Inability to think straight (Memory loss, confusion)

Pregnancy: Hot and cold flashes (Hormones)
Gone hypo: Constant cold (Lack of Hormones)

Pregnancy: Constant Doc appointments (check on bloodwork/baby)
Gone hypo: Constant Doc appointments (check on bloodwork/RAI Scan)

Pregnancy: Mood swings (Hormones)
Gone hypo: Mood swings (Lack of Hormones)

Pregnancy: Nausea (Hormones)
Gone hypo: Nausea (RAI)

Pregnancy: Changes is appearance (Body changing from the baby)
Gone hypo: Changes is appearance (Body changing from lack of hormones)

Pregnancy: Lasts about 9 months
Gone hypo: Lasts about 30 days

So, it’s 1/9 as long, and has many, many, many of the same “symptoms” as pregnancy (these are just some). So why, may I ask, do I get treated as if I am a burden on the company, when pregnant women are treated as if it’s the best thing ever? Some companies even organize baby showers on company property for their staff. Do they organize anything to help someone go through the cancer treatment? Based on 3 different companies I know of, no, they usually don’t… if anything the employee is almost penalized for it. My favorite part is that for the most part, women can choose when and if they want to have a baby (yes, I understand not everyone does, but many do), I never chose to have cancer or be treated for it. I don’t enjoy this at all and the only “benefit” I get from it is another clean bill of health for a couple of years until I have to do it again. I’ve actually had people ask me if I could alter the times my blood work was going to be taken or the RAI dose to be given to make it more convenient for the company… even if that meant I’d be off my meds for up to a week or more longer. Amazingly when going to find out the sex of the baby I’ve yet to hear someone say “Can you wait a week, it’d be more convenient for us,” if anything, I’ve heard other employees ask if they need someone to drive them to the hospital!

I know, I’m just angry and upset, but I need to rant about this to someone and also have it be known that anyone out there dealing with it, it’s not just you. I swear. If you’re dealing with a company that is acting similar to what I’ve posted, I’m sorry to say, it’s not just yours.

If anyone has anything they’d like to add, stories they’d like to share, or things they’ve dealt with like this in the work place, feel free to leave a comment! Until then, I’ll try and post on here when I can!