"HYPO HELL"

Today is day 9 on withdrawl from the temporary thyroid they had put me on. Day 30 off of the regular one. The difference is the regular one stays in your system for a long time and the temprary doesn't.

 So, what is happening? My body is without any thyroid horomone.The symptoms have started with a numb, puffy, fat face, neck and eyes, very foggy thoughts, PAIN in my calves, feet, arms, hands, neck and head. I'm very tired and very weak. Unfortunately this is going to get worse before it gets better. The very worst will be closer to my I-131 Radio Active Iodine (RAI) treatment on April 10th.
 
As the withdrawal continues, my finger nails and hair will constantly split and break. I will become noticeably short-tempered and temperature intolerant. My whole body will have numbness throughout and limbs will go to sleep when bent or pressed and even for no reason at all. My arms/fingers will be the worst when typing as I rest my arms on the desk and keyboard. My thoughts will be slower and lacking comprehension. My desire to do will be there but the ability to do will not. Even just a smile will feel funny. Walking on tingling feet will hurt and sitting will be uncomfortable no matter the position.


People will see me in a daze and wonder why I look lost. I will pause and have to gather my thoughts to be able to answer questions that normally would require no thought. I may say or ask things twice without remembering that I had. I will not recall where things are placed. Basically, my overall whole body will function slow or delayed. (Already there!) 


During this time, I also have to remove all iodine from my body. The low/no iodine diet stinks! Here's the diet in a nutshell: no iodized salt, no dairy, no egg yolks, no sea food, no soy, no red dye/coloring, no chocolate, no molasses, no processed food, and no restaurants. 

 April 6th, I will go in to the Nucleur Medicine Department and they will give me a trace dose of the I-131 (RAI) On April 10th I will go in for a Whole Body Scan and depending on how much thyroid tissue (cancer) shows up and if and where it has spread, will determine how much of the BIG Whole Body Dose they will give me. I will now be at my lowest point and I swallow a radioactive iodine pill that lets me light up like a Christmas tree. I then go into isolation for several days so that I don't radiate anyone. I will have a follow up scan on the 18th to see if the radiation is doing it's job. Somewhere at this point I get to start eating normal again.

This is what they call HYPO-HELL and now I know what they are talking about. If you see me around you will know why I have puffy eyes, puffy cheeks and a puffy half smile. I look and feel like I have the flu but I'm not contagious.

Going Hypo

So I have had a couple of really good days and have tried to stay busy getting things done in preparation for the days I'm not going to be feeling so good. Well, today it has caught up to me. I know that every day I will be getting a little worse. The doctor has drawn it out for me and I should just expect it. But I couldn't help but think maybe I would be different. Wishful thinking. I slept almost 12 hours last night and still woke up with a huge headache, but the worst thing was my calves! They have constant cramps in them. My neck also hurts. This is all part of going "Hypo" thyroid, which is the whole purpose of going off of my medication. So hard to even walk because my calves hurt so bad. Dr. Davies told me I would feel bad and then much worse. He even drew me a chart. If I can figure out how to post this I will. I am expected to be at my very lowest right around my I-131 (name of the Radioactive Iodine) date of April 10th. Probably a whole week or so there.

Low-Iodine-Diet (LID)

So I have 5 days to prepare for this special diet. So can I just grumble a little bit before I try to find the positive? Only 5 oz of meat a day? No dairy? Really? No cheese, milk, eggs, butter,ice cream or chocolate? No storebought foods with "salt" as an ingredient? Nothing from the Sea? No shrimp? No crab or lobster? Sea Salt? No Soy or Whey products, No red dye, no sauces or condiments, no commercial bread products, nothing with salt unless I make it with non-iodized salt. Okay, not like I eat all that stuff anyway. But I am starting to realize and empathize with what my poor friends with allergies, or kids with allergies have to go through on a daily basis. It is not fun! Did you know that Iodine is in almost everything? And animals absorb iodine also so that's why the limit on meat. Canned food all has iodine. Yesterday I went to Costco and started looking at things I might be able to have. Well, I came home with "ONE" thing! Almond Butter. Yep, it doesn't have any salt in it at all! So there is something I can dip my fruits and veggies in, Yay! I also bought some fresh chicken thighs so I could make some chicken broth with non-iodized salt. That way I can have that in my freezer ready to go to make soups with. Usually I cook with the frozen chicken pieces in the bag at Costco. But did you know that they have a salt solution injected into them? I wondered why the chicken never really needed salt. It's amazing what you learn when you actually read the label! Now I am thinking of recipes I could possibly make up ahead of time. I thought of Lasagna, but wait, who can have Lasagna without LOTS and LOTS of cheese? Ricotta, Mozzarella, Parmesan, Cottage to name a few. Nope, I will still make it for the family to have. I would also have to make the sauce totally homeade without canned anything. Not sure how that would be. I guess I'll just stick with simpler stuff. Like a piece of chicken with a baked potato (inside only as the skin has iodine), and a salad. Not so bad. I did the Paleo diet for a couple of months about a year and a half ago. I actually felt sooooo good on that diet. It's kind of a caveman diet. NO processed foods at all. Lots of fruit and veggies, nuts and seeds, and no dairy. The dairy I had a problem giving up. Oh and NO SUGAR! That was super hard. I think that is why I felt so good on it was the elimination of gluten and dairy and mainly SUGAR. So if I could do that diet then this one should be easy. I have actually been wanting to go strictly Paleo again but right now my comfort foods are helping me through all this. Well, until April 2nd. I should only have to be on this LID diet for a few weeks. The only reason it would go longer is if the radiation doesn't kill all the cancer. Then I think I have to repeat. So if you think of anything that doesn't contain iodized or sea salt, milk, eggs, or butter, I could use the ideas! I have found a wonderful blog that has been put together for this LID diet. Just in time. http://thelowiodinediet.blogspot.com

Preparing for Radiation

This is a huge learning process for me, and everyone I know. Thyroid Cancer is a little different in how it is treated. So now that they have removed the thyroid and nodules, they are going to use radiation to kill any existing thyroid/cancer cells. I have read that if your nodules are small and the cancer was inside the nodules, that they may decide not to do radiation at all or maybe a small dose. I have also read that in a lot of those people it returns later down the road. This is where you really need to do your homework, get a second or third opinion, and pray about it. My cancer was staged at a 2 because of the size of the tumor. My doctor also said he's going Zap it so that hopefully I won't have to deal with it later on. He said that he doesn't know yet whether my cancer will be the type that is aggressive and will be hard to treat. So the way they radiate thyroid cancer is very interesting. First, they take you off of any and all thyroid medication. They took me off of my Synthroid that I have been on since I was 21, after surgery. They gave me Cytomel, which is a little daily dose just to make me feel a little better until I got closer to my treatment. You also have to wait 6-8 weeks after surgery for the treatment. That really "bugged me as it felt like nobody had any urgency in the matter and I felt like I needed to do something now! Last week I was taken off of the Cytomel, and had to stop working as I'm a school bus driver and the doctor doesn't want me driving around without any thyroid in my body. Our thyroids control so many things in our bodies. It's really amazing what that little gland's job is. Here is a link if you want to know more www.http://housecalldoctor.quickanddirtytips.com/what-does-the-thyroid-do.aspx On April 2nd I will have to start a low-iodine diet (LID). The reason for this is that they want to deplete all the iodine from any existing thyroid cells. Our thyroids absorb iodine and use it to function. Radioactive iodine is supposedly a safe therapy because the radioactive iodine is primarily absorbed by thyroid cells. Thyroid cells are the main cells in the body that can absorb iodine, so no other cells are exposed to the radiation. When the thyroid cells—both healthy and cancerous—absorb the radioactive iodine, they are damaged or destroyed. Thyroid cancer cells, however, don't take up the radioactive iodine as easily as the healthy thyroid cells do. To encourage them to, is the reason for the diet and the medication withdrawl.

I'm not dying, I'm just learning to live with cancer.

So one of the hardest things I've found about having cancer is the mind games. I think a lot. I am an overthinker. My husband even bought me a book "Women Who Think Too Much" *lol*. So I am constantly thinking about my life and my kids and what's going to happen. What the tests are going to show. What I read on the internet. What kind of thyroid cancer do I have. The really deadly one that you don't even live a year? I need to write a journal, quick. I need to take pictures. I need to make all my family members quilts, What do I want my funeral to be like. How will people remember me? Will my husband re-marry? Who will take my kids to church? Will I lose my hair? Sooooo many things going through my mind. What about work? I'm out of sick days. How will I keep my health insurance if I'm sick and can't work? Will they let me go? Can I still even drive? I have cancer you know.... Well, something I read made a HUGE impact on me and I've decided this is my new outlook. It was a very simple phrase "I'm not dying, I'm just learning to live with cancer"! At least for now!

Winter Break

Before my surgery was scheduled we had already planned on going to see Justyn, our son at BYU Utah. The hotel was paid for and I wanted to go. I figured I'd probably rest more in a hotel where maids came in and we ate out at restaurants, right? The hardest thing was the 12 hour car trip. I couldn't help drive at all because I couldn't turn my head! I also was on pain meds. We drove straight through. The hotel was super nice and retro. Loved the decor! So nice to see Justyn. We went to movies, dinner, and bowling one night. It was funny because I couldn't do it. I never realized how much we use our neck muscles to do everything until now. Everything hurts, even putting on mascara! So to pick up a bowling ball and walk with it and try to roll it, forget it! So Justyn went and got this metal thingy that they let little kids use to roll the ball down. He had to pick up the ball and put it on the metal thingy for me so the only thing I was doing was standing there! Everyone took turns helping me. It was a lot of fun though. My follow up appointment to learn what pathology had found was coming up the next week. So while in Utah I spent a lot of time looking stuff up about thyroid cancer and there is a lot of scary stuff out there! I also spent a lot of time shopping for scarves to hide my horrible scar. I bought Mederma and found out real quick that you don't use that on an unhealed scar! Ouch. Neosporin was a lot better.

Surgery 2/13/12

So I went in to have 1/2 my thyroid removed at Swedish Hospital in Seattle, by Dr. David Moore. When I woke up I vaguely remember the doctor telling me that they had found some cancer and had to remove my whole thyroid. He had to leave a little thyroid tissue because it was wrapped around my vocal chords. I was shocked. How could the FNB be so wrong? I can't even begin to explain how it felt to hear those words "CANCER"! My husband was there but he seemed fine. Anyone that knows him can understand. He's a very calm, cool and collected kind of guy. Besides, it wasn't all for sure until pathology finished all of there tests. My neck hurt really bad. Mostly in the back. It had hurt since the FNB. Felt like my lymph nodes were swollen. The front of my neck was covered and I was afraid to look. When I finally did I cried. It was a huge cut across my whole neck. It was red, swollen and really ugly. I couldn't move because it hurt so bad. I was in the hospital for 2 nights and then came home with pain meds. I guess I should be thankful that the surgeon and pathologists in the operating room were so skilled and knowledgable. That they recognized cancer and could take out both sides of my thyroid in that one surgery. What happens usually is they remove half, then close, wait a week for pathology then go back in a week later and take the rest of the thyroid if it was cancer. So there's a blessing.

This year

So last year, 2011, I told my Endocrinologist that I felt tightness in my throat and felt like I couldn't catch my breath. I had been having a little trouble swallowing too. He dismissed it and said it wouldn't have anything to do with the nodules. I asked if we should do an ultrasound and he said that we would do it later. I also asked him at my next appointment and he put me off again. I called to make an appointment one day and they told me the reason he was so hard to get into was that he was retiring an working limited hours. I couldn't get into see him for 4 months! So then I decided, heck with him, I will just go back to the surgeon who saw me. He said that it could very well be my thyroid nodules and ordered an ultrasound. The ultrasound came back saying that 2 nodules had grown significantly! One had more than doubled in size and was over 2cm. He then ordered another fine needle biopsy (FUN). The FNB came back benign again. What a relief! But we still had a nodule that was growing and my doctor said he thought surgery to take out that half of the thyroid was the best option. He also told me a story about a guy that he had just done surgery on, who's biopsy was also benign but ended up being cancer when they got in there. This concerned me so I agreed. We set up the surgery for 1 1/2 weeks later. I called my Endocrinologist and left a message that I was having the surgery. His nurse called back and said that he said that it wasn't necessary and he'd talk to me about it at my appointment in April. I wasn't listening to him this time. Surgery here I come.

3 years ago

During a CT scan they discovered some nodules on my thyroid. My primary care doctor ordered an ultrasound and sent me to a an endocrine surgeon. The surgeon ordered a fine needle biopsy. A fine needle biopsy is NOT fun. They use ultrasound to guide them while they stick a long needle into each nodule about 5 times. Each time they wiggle it around and go in and out of it to try to gather a good sample. They said it wouldn't hurt but it did. Not terribly but very uncomfortable. I wish they would have just put me out. Of course then you have to wait a week for the results. My biopsy came back benign! The surgeon still thought I should have them removed and that would be the only way to know for sure. But my Endocrinologist said it wasn't necessary and that we should just wait and moniter them. He said that 99% of these nodules are benign and lots of people have them. So I decided to listen and take his advice and wait and watch....

5 years ago

I had been told at one time that I had a "goiter". My thyroid was enlarged. Nobody ever checked it out and I didn't think it was a big deal. I had been having a lot of health problems. A lot of trouble breathing and I had been diagnosed with type-2 diabetes, and sleep apnea. I also had several surgeries because of these health problems. It seemed like overnight I was hit with these things. I don't think I will go into all of them but I do wonder how much of all these other health issues had to do with my thyroid problem. Also, I had noticed a really dark line on the back of my neck. I researched it and found out it is called Ancanthosis Nigricans. The doctor said it was from the diabetes. I also read that it could mean there was cancer somewhere in my body. During all my surgeries, which included having my Ovaries removed due to a very large cyst, they had never found any cancer, so I just kind of put that out of my head. The doctor didn't seem to be concerned so why should I be.

30 years ago

Back in 1982, after the birth of my son, I got pretty thin. I hadn't changed anything but the weight just dropped off after having him. It was really nice because I always battled weight and always needed to lose a few pounds. I got down to about 118 which is the lightest I'd been since 7th grade. The reason I share this is that since then I have learned that it is really common for our thyroid's to go "whacko" after having a baby. At this time I believe I must have been "hyperthyroid" I will later post some information about this. Then in 1984, after the birth of my only daughter Nicole, I made a visit to the ER. Nicole was losing lots of weight and they told me to stop nursing her. They also told me to see my doctor. I was feeling really tired all the time and I specifically remember sitting on the couch and thinking about all the things I needed to do and not being able to move! Now this was back in the "OLD" days where you had just one doctor who did everything, especially in a little town called Hermiston, OR. My main complaints to him were, lack of energy, not being able to lose pregnancy weight, hot and cold flashes, and depression. He decided to test my thyroid. After several radically different test results, showing "hyper", "hypo", back and forth, he sent me to the hospital for testing. Now this was a LONG time ago so I don't have the greatest memory of what went on. I do remember them giving me some sort of radiation and body scan which showed that my thyroid wasn't working at all. So the doctor put me on thyroid medication. I have been on this ever since and my levels have been monitored regularly. They have had to adjust it a little now and then.