A Real Pain in the Neck

My journey through whatever the heck is going on with my thyroid.

[arealpainintheneck]

So here I am, I think it has been about five months since the surgery. The scar has faded pretty well. I stopped using the silicon strips after about six weeks, I think. They were just getting annoying. When I remember, I use Maderma with SPF when I go outside, but I’m not diligent about it. The scar has faded a lot and there’s no thickness to the skin. I’m no longer self conscious about it, and I often forget that it’s there.  Currently, I’m taking 88 mcg of Synthroid. My vitamin D levels are getting better, although they’re still pretty low. I’m severely anemic, but likely due to other health factors I’m experiencing. Now that the nodule that was causing all havoc is gone, I’ve been diagnosed with Hashimoto’s - the complete opposite of what I had when the nodules were ruining everything. It’s likely that the other half of my thyroid won’t ever fully function, but there may be a chance that it starts producing more thyroid hormone. I wanted to keep half because the chances that I’d be on medication for the rest of my life were slim, but I guess I’m in that slim percentage. 

I know all of the stuff I’m dealing with is likely a result of the radiation treatment I had 20 years ago. I am very grateful to be alive, but instead of ‘what doesn’t kill you makes you stronger,” it seems that ‘what helps you live might end up killing you anyway.’ It’s really bittersweet. Anyway, I still have hope that someday I’ll feel like a normal human being.  

[arealpainintheneck]

So this is what I’m dealing with.

[arealpainintheneck]

a comparison

I’m not sure why week three looks better than week four. Maybe it’s the lighting.

[arealpainintheneck]

week four!

Not much to report on the incision front. I am still really exhausted. I finally had to switch out my silicone pads/sheets/whatever. Despite being exhausted, I’ve been trying to walk more. I cancelled my membership at the gym, because I never go. I’ve been trying to go to a different park every day. Yesterday, I didn’t want to leave until I hit 10,000 steps. I’ve had some hip pain and needed to take it easy today, but I got about 5k steps in at Target. 

Here’s the fourth week image:

[arealpainintheneck]

three!

I’ve been wearing the silicone pads/strips/sheets/whatever about 23 hours a day. I have two I’m using now. I’ll take one off when I get in the shower and switch again in the morning. One strip is supposed to last 7 days. I noticed two days ago that the scar was much flatter. It still weirds me out to touch it. The end where the draining tube is a little thicker/raised/tender to the touch. 

Here’s the photo three weeks in. The rectangle around is from the patch. It has an adhesive which is why it’s slightly red. I think I’ll take one more picture next week, and then start doing monthly photos:

[arealpainintheneck]

two weeks.

It’s been two weeks and a day since my surgery. I’m mostly feeling okay, although I get sore every once in awhile. Doing okay energy wise. It’s fluctuating. I think I’m still adjusting to having half a thyroid, having ‘lady times,’ and I may have caught a cold - so it’s hard to tell if there’s any difference. 

I haven’t really been as hoarse lately. I still can hardly sing in the car without feeling like I’m trying to hit the Mariah Carey notes.

I’ve been wearing the silicone sheets for about a day and a half now. Today I actually went out without a scarf. They basically look like bandages. It’s too bad they don’t come in a spectrum of flesh colors. 

Here’s what it looks like on me: 

Here’s what my incision looks like after two weeks and a day from surgery, and a day and a half of silicone sheets:

I think it looks pretty good! It’s still raised and you can see the raised bump through the silicone sheet. I have long hair, so I wear it down and I don’t think it’s very noticeable when I’m wearing the sheet. I’ll try to update again next week.

[arealpainintheneck]

One Week

It’s been one week since my procedure. I had my stitches out today, and I’m so glad of that because that tape was really starting to itch. My incision hurt a little more throughout the day, probably because it’s loosening up. It’s thicker on one side than the other. My doctor said not to lean my head back as that will strain it and cause thickening. I should also avoid the sun. It doesn’t look nearly as bad as I thought it would. 

Got the results of my nodule pathology and everything is BENIGN. Thank God. 

Yawning still hurts. I tried singing in the car and I definitely can’t do that (worse than before). My doctor said that because I’m coughing, it’s a good sign that my vocal cords are together. I am not sure how they’re involved in the procedure so maybe I should research that. I hope this doesn’t kill my karaoke “career”! I’m still hoarse off and on. 

My pulse is still high. The doctor isn’t sure why. I don’t know if hyperthyroidism goes away gradually or if I’m just not destined to lose this pain in the neck without more fighting.

Next week, I can start using the silicone sheets! I also bought a serum for during the day. I went to Neiman Marcus and they gave me a couple of samples of La Mer the Concentrate. I am not spending $350 on anything without taking it for a test drive. People on the internet say it works really well, but what do people on the internet know? The women at the La Mer counter at Bloomingdale’s were so snobby - like those jerks on Rodeo Drive when Julia Roberts. . .er Vivian went there. The beauty industry is 80% snake oil and I’m not going to waste money on something that doesn’t work!

Sorry to rant. Here’s a picture at 1 week. I might upload pre and post-op pictures too. This is at night.

[arealpainintheneck]

post hemi-thyroidectomy

SNEEZING IS NOT RECOMMENDED.

[arealpainintheneck]

hemi-thyroidectomy

So it’s come to this. Actually, I’ve been waiting about four and a half years (and probably longer, unbeknownst to me). 

I had several nodules growing on the right side of my thyroid. They may have grown there because of the radiation I had to my chest and neck as a teenager. My cousin also had them, so maybe they’re genetic. Maybe they grew because I grew up near a former radioactive storage facility. 

Whatever reason they grew, I needed to get rid of them. 

My hemi-thyroidectomy took place on Thursday, 19 March. It’s only Monday, so I can’t thoroughly describe the entire process, but so far it has been okay. I’m sure having a full thyroidectomy is different. The left half of my thyroid is supposed to adjust and I should be able to live without thyroid medicine. 

So far, the tips I have are:

- research your surgeon thoroughly - ask a lot of questions, write them down as they come to you - stock up on straws, paper plates and plastic utensils - I don’t have a dishwasher or anyone washing dishes for me. I know they’re wasteful, but I wish I had some disposable items for a few days. Straws are great because you can’t really put your head back to drink what’s at the bottom of the cup.  - washing hair - this isn’t really easy either, especially the rinsing. I don’t plan on going anywhere for a few days, so I think my hair is just going to get wet without soap for awhile. 

In the hospital, I had morphine through the night and my doctor had given me Tylenol with codeine for the rest of the time. I took about two per day and mostly when my pain was about a “3-4″, because I didn’t want it to escalate. I probably could have done without on Sunday, but I knew I needed rest and that helped me relax. It’s 2pm on Monday and I haven’t taken anything yet. I mostly feel itchy.  I was on soft foods Thur-Fri, but got a little overzealous and ate popcorn and a quesadilla Friday night. I noticed that a lot of chewing wasn’t really helping my pain, so I went back to soft foods the next day. It’s Monday, and I’m not about to rush out and get a steak, but I’ve done okay with pasta and softer fruits (oranges, pineapple, but not apples).

I’m still waiting to see if I feel better now that the nodules causing my hyperthyroidism are gone. My resting pulse is still 102+, but my doctor said sometimes it can take a little while for everything to regulate. My hair is still falling out, but I know that can take awhile to regulate itself as well. 

I’m off to the doctor on Thursday to get my stitches out. I’ll try to update if I see more changes.

[arealpainintheneck]

Hello. . .? It's me.

It's been awhile since I've updated. I've been on the beta blockers for awhile, and that first experience has worn off. I did okay for awhile and actually had a regular sleep schedule. I went and messed it up and now I'm all out of whack again. I nearly slept 12 hours from last night until this afternoon and about four hours after I got up, I needed a nap. It never ends, does it?  I couldn't schedule a hemithyroidectomy last year because everyone was trying to get surgery in while they could. I couldn't make it work with school so I can't get the surgery until March 19. Hopefully they won't reschedule me because I can't postpone/drop another class. 

I don't remember if I mentioned the ADHD but I was diagnosed with that although my endo thinks it's hyperthyroid related. Since I won't have any (HOPEFULLY) relief until this quarter is over, I'm still considering the prescription I have for Ritalin that I never filled. The beta blockers are at least calming my heart so if that's in check, I feel like Ritalin will work. It's all so scary though and I hate taking anything stronger than ibuprofen. I can't calm my brain though. Nothing works.

[annabellehectorsworldofweird]

[arealpainintheneck]

Finally! An answer?

I really am blessed to have an amazing endocrinologist. I have read so many horror stories about skeptical doctors, uncooperative doctors, and doctors who are just plain jerks. If I think we should test something, I say, "I know I'm not a medical doctor and I read this on the internet. . .but what do you think of this?" She explains why she is or isn't in favor of the test, describes experiences she's had in the past, but ultimately leaves it up to me. I really want to move out of this area, but I don't want to leave my doctors!

My doctor called with my results immediately to let me know that the chances that my nodules are cancerous are VERY LOW. I was still pretty nervous and worried, but I've since calmed down a bit. My TSH is still extremely hyperthyroid and it all makes sense now. The nodules on my thyroid are producing way too much thyroid hormone. She has no idea why I tested as hypothyroid a few years ago, even though I had the nodules at the time. She wasn't my doctor then, so it's very mysterious. Since I've seen her, she's been testing me every 3 months to see if my levels have fluctuated and I've tested hyperthyroid each time. 

I'm very relieved about the low risk of cancer. I still need to have a hemi-thyroidectomy, because the nodules haven't stopped growing. I don't want to spend the rest of my life monitoring the size, taking medication to regulate them, and getting regular biopsies. If I can avoid all of this and return back to a more normal life, I am all for it. Surgery will also put my mind at 100% rest about the possibility of cancer (It's at about 90% rest so that's bearable). 

Until I'm able to have surgery, my doctor has put me on beta blockers. Parallel to this, I've been seeing a psychiatrist. I was hooked up to a machine for ADHD testing, and some indicators were high, others were moderate, and others were low. He prescribed Ritalin, but I had to wait 12 or 24 hours before the pharmacy would fill my prescription. In that time, I saw my endocrinologist with my full results, and she informed me that hyperthyroid patients are often diagnosed with ADHD, even though they don't have it - the hyperthyroidism has some of the same symptoms. This explains so much for me. I haven't been able to concentrate or do anything productive, to the point that I went to a psychiatrist because I was so bothered by it but could not control it. 

Beta blockers are also good because my pulse has been between 90-122 bpm. Since starting on the medicine a couple of days ago, i'm now 70-80 bpm at rest. The first two days I was even more exhausted than usual, but now I'm just kind of exhausted. If you know anything about my life, 'kind of exhausted' is actually a good thing. It's way better than my usual level of exhaustion. A REALLY good thing (and probably related) is that I've woken up in the morning and haven't used every bit of energy to get myself out of bed. I'm actually awake! My body doesn't need to roll over and go to sleep, although mentally, I think it's having a hard time adapting to that. It's only been a few days, but I really hope this gets better every day. I have noticed that I'm able to focus more. I've actually been productive, not extremely, mind you, but getting ANYTHING done is pretty much a miracle for me right now. 

I'm told that I'll see similar improvements once my nodules are removed, so I'm really looking forward to that. I'm not looking forward to the actual surgery and recovery part, but it's a means to a better life. I really hope it is, anyway.

[arealpainintheneck]

Oh you're HYPERTHYROID? Shouldn't you be losing weight???

annoying person

[arealpainintheneck]

Day 15 - FINALLY

I decided not to record yesterday's food, because I feel like I'm not on the diet anymore. The people at the nuclear medical center basically said to avoid things from the sea (fine by me, I don't eat seafood) and things with red dye in them. I'm so used to eating by the rules though, I only broke them for nachos the night I found out. 

I had to get up at 5:45 today to drive to get my uptake scan (by 8:00 AM. traffic is the worst). I was exhausted yesterday, as I usually am, but I noticed it was 8:30 PM. I knew it would be a mistake to take a nap but I was so tired it hurt. I set the alarm for 30 minutes, and at 9:00 PM, I thought I should just go to sleep for the rest of the night and be well-rested in the morning. I guess I've forgotten who I've been for the last four years of my life. I woke up at 12:00 AM and didn't go back to sleep. JOKE'S ON ME!

Today was the big day! I didn't eat anything after 8:00 PM last night. When I got to the facility to get my pill, the technician said, "Oh they didn't tell you that you could have water, apple juice, or plain coffee?" NOPE!  I took the pill. It was in a huge container and the technician handed me the bottle lid with the pill inside. I wasn't supposed to touch it, but I had to swallow it. That's not scary! 

I got a weird taste in my mouth, kind of like the taste after dental x-rays. I've felt a little woozy all day. I was granted permission to eat two hours after taking the pill. I asked twice if it was okay to eat dairy. I took full advantage by indulging at Five Guys. I'd been dying for a cheeseburger. I think my taste buds are a little off because it wasn't heaven like I had dreamed. I also felt so terrible after I ate it. Throughout the afternoon, I felt nauseated. I'm not sure if it was the  pill or the fast food. I usually do okay after fast food though. Maybe it was a combination of both, or my iron stomach has weakened!

I went back in the afternoon to have my uptake scan. First, they wanted pictures, so I was on a table, kind of like a CT scan. It reminded me of when I got radiation so many years ago. It took five minutes for each picture. I was trying to dream about something else, so I wouldn't think of moving. After that, they said they had to measure me. They took a one minute photo of my knee for background purposes or something, and then they took one of my neck. They said that part was the uptake and I have to go back tomorrow for one more 5 minute procedure. After that, I am fully in the clear and I can eat whatever the heck I want. 

One thing that was really irritating was that one of the tech's said, "We have to take a picture of your neck, because that's where your thyroid is." SERIOUSLY? Do you think I've reached this point in my medical history that I need an uptake scan and I have no idea where my thyroid is? I just replied, "I KNOW." I guess everything irritated me today. It's over though. It's almost completely over - at least for the week. I can't wait until it's really over. 

[arealpainintheneck]

Day 13

When I had discussed this scan with my doctor, she told me I'd need to be on the low iodine diet for at least 10 days. I've read varying opinions on the matter, with some even saying that LID really isn't necessary. I took it all with a grain of (non-iodized) salt.  My procedure is Monday, so I was looking over the guidelines like I should have done two weeks ago: 

The following instructions are for patients who will NOT be having an I-131 treatment following this scan.

Some elimination, but not complete avoidance, of iodine containing foods is necessary. Approximately 3 to 5 days before the test avoid seafood, sushi, seaweed foods and products (kelp), food containing red dyes, and vitamin pills containing iodine (many vitamins have iodine in them, and if unsure or not listed on their label, please avoid taking them). Avoid all health food store items such as herbs. You may have dairy products and bread. It is not necessary to use iodine free table salt. You may use regular table salt.

Hahahah I guess that's what I get for not reading my instructions. Oh well! It was a learning experience, and I definitely cooked more - which is something I still might do going forward (with an emphasis on MIGHT). I lost a few pounds and maybe my nodules shrank (TBD)? 

Today I ate some leftover beef and macaroni, grapes, a couple of Starbursts that weren't red, and now I am going to eat some freaking nachos.

[arealpainintheneck]

Day 12 - a little late

My mind is a little fuzzy, but I think the only thing I had to eat yesterday was hamburger and noodles. I may have had fruit, but I can't remember.

Before dinner, I decided to drop by the store and pick up a few things. I was standing in line and my leg started feeling kind of weird. It was sort of like the feeling you get after sitting on your leg after awhile - not tingly, but stiff. I then started sweating. I looked around at the line and no one else looked like they were uncomfortable. I checked out and sat in my car. I felt dizzy. A warm feeling came over my heart as if someone poured very warm water over it. I wasn't breathing quickly, but I felt like I wasn't getting enough oxygen.  I sat in my car and weighed my options. My face didn't look droopy so I didn't think I was having a stroke. My pulse was 118 though. I had no pain. I had to think it over - was it serious? All I could think about was the $450 I'm going to have to pay for my test on Monday on top of about $5000 worth of post surgery bills from this summer. Urgent Care was closed by then, so I was looking at $200 co-pay plus possible surprise charges after the fact. I know it's a stupid thing to think about when you could be having some sort of heart attack or stroke, but my medical bills have nearly drowned me. I considered the alternative and drove myself to the hospital. 

I had an EKG, blood tests, and a chest x-ray. Everything came back fine. No one really knows what happened but everyone wanted to blame my thyroid. I know it's the center of a lot of problems, but sometimes blaming it for everything feels like a copout. Maybe it was related to this weird diet I've been on where I'm not only not getting iodine, but very little calcium on top of that, and who knows what other minerals I'm missing. Still, despite more bills to suffocate me, I am glad everything was okay. The doctor seemed to believe I was right in going to the hospital, so it wasn't a matter of overreacting (something I also worry about).

So that was Day 12!

[arealpainintheneck]

Day 11

I woke up this morning and was immediately TERRIFIED. I always wake up exhausted, but this morning, I felt well-rested. I assumed that it was 1pm and I'd slept through a meeting. This never happens. I don't remember the last time I woke up with energy. I still went back to sleep.

I don't remember if I mentioned this and I'm too lazy to look, but I think that maybe one of my nodules is shrinking? It feels that way, anyway. I probably touch it more than I should, so I'm pretty sure I"d notice if it got smaller. Maybe it's all in my head. Here's to hoping it's not!

I just realized that tomorrow is Friday and then it's the weekend, and then on Monday I have my scan. Tuesday I can finally eat a cheeseburger! or pizza! or cake! or a cheeseburgerpizzacake (ok maybe not that). 

Today I ate: - apple + peanut butter - pan fried skinless potatoes - iced tea - two small hamburgers with a tiny bit of daiya Okay now I can't remember if I ate dinner or not. I did all of my dishes without thinking about it, or maybe it would have given me a clue.  Tonight I made Cilantro Garlic Sauce but I substituted oil instead of mayo. It definitely doesn't taste the same. I might put it on pasta though. I should probably add that I used garlic infused oil so it is extra garlicky. Phew! 

I also attempted to make Marcella Hazan's Tomato Sauce but with Earth Balance instead of butter. I guess I should admit to another dumb thing I did, because apparently not every Earth Balance Buttery Spread is soy-free. I saw a "Soy Garden" flavor, and just assumed the plain butter flavor was soy free. I should have learned my lesson the first time I attempted to buy a fake dairy product. If you're going to the store for Earth Balance, be sure to get the pinkish red tub that deliberately says SOY FREE. I'm ready to pound my head on the desk. Yeah so I guess I'm freezing that until I can actually eat it!

Oh and good news! The only casualties of my veggie haul from the other week have been 2 cucumbers and an avocado. My cauliflower and pineapple are still going strong. I might make mashed cauliflower  to use up the rest of my garlic.