How different our lives are when we really know what is deeply important to us, and keeping that picture in mind, we manage ourselves each day to be and to do what really matters most.--Stephen Covey

Friday, August 26, 2011

A little bit about what I've been going through

This is gonna be a long one.


Slowly but surely, I am starting to feel better. I was placed on an antithyroid medication Tapazole (Methimazole) about a week and a half ago and so far the only thing that seems to be improved by it is the nausea. Honestly, I don't know how the nausea is related to hyperthyroidism, but I guess everyone is different when it comes to symptoms and it is one of the things that really affected me. I cannot stand being nauseous because I cannot stand throwing up--it was probably the symptom that caused me the most anxiety and stress. The heart palpitations have caused some stress and anxiety as well, especially since my PCP thought that it was just anxiety and chalked it up to me going off my anxiety meds. Seriously, I have never been more frustrated with my doctors than in trying to figure out what is wrong with me. I had an EKG and the results were normal so my PCP had a serious conversation about anxiety and managing it. I kept telling her that I know what anxiety feels like and it was not anxiety but she didn't listen to me... guess it's time to find a new PCP?? 

Anyway, my endocrinologist said that the Tapazole can take up to 4-weeks to start working but when I went in last week, they took some more bloodwork (just one vial this time!!) and mailed my results to me. My levels are still elevated but they are improved. It is a very small improvement, but an improvement none-the-less. 

Jake and I are leaning toward surgery. Actually, Jake was leaning toward the radioactive iodine treatment (RAI) and I was leaning toward surgery, but after talking about our options and pros and cons, I think that we are going to go with the surgery. I've done a lot of research on both options and if you know me, this is normal. I am a strong researcher and I actually love to do it. It drives Jake nuts because he especially hates when I look up health related stuff because he doesn't like when I self-diagnose or find "scary" stuff and start thinking about it/talking about it. I tell him that it doesn't stress me out when I find stuff like that but that, for me, I have to educate myself about what is going on and have options and knowledge to move forward. And I've found a lot of information... 

I'm going to outline the 2 options below. Someday someone with a toxic (hot) nodule will be looking for information and they may come across this post. Maybe it will help them. I know that the forums and a few blogs have helped me with information on what other people have gone through and chosen to do. The thing is, everyone needs to find what works for them. There are a few factors that Jake and I have considered that we won't go into on here because they are our own personal reason's and choices and we are not ready to discuss them with other people, but hopefully people will be helped. I know that through all of this I have been confused and scared and anxious about it. I was confused about being diagnosed as having hyperthyroidism because it made no sense to me because I've had trouble losing weight and clearly have weight problems now. I was anxious because I have had some troublesome symptoms and have generally felt like crap for the past 3 months (if not longer) and it took so long to get answers about what is going on. It's been a long road. Stressful, exhausting, and full of anxiety. For both me and Jake. 

Treatment Options for a Toxic (Hot) Thyroid Nodule

First, let me explain the Toxic Nodule--Basically, it is a single nodule or lump in the thyroid can produce more thyroid hormone than the body needs and lead to hyperthyroidism. It is called toxic (or hot) because of the production of too much thyroid hormone. This occurs in 1% of the population and affects more women than men. Oh, and did I mention that most people with a toxic nodule are over the age of 50. Great, I have an old body to go with my old soulMine shows up on an ultrasound as a cyst that is half fluid filled, half solid. During the uptake and scan, the nodule took up all of the radioactive iodine (small dose) that they gave me which categorized my thyroid as actually being hypo and the nodule being hyper. 

Here are the signs/symptoms:

  • a fast heart rate
  • anxiety or irritability
  • trembling of the hands
  • weight loss despite eating the same amount or even more than usual
  • hot flashes and increased perspiration
  • loss of scalp hair
  • separation of fingernails from the nail bed
  • muscle weakness, especially in the upper arms and thighs
  • loose or frequent bowel movements
  • smoothing of the skin
  • an unexplainable change in the menstrual cycle in women
  • an increased chance of miscarriage
  • bulging of the eyes or double vision (this is a symptom of Grave's Disease)
  • irregular heart rhythm or palpitations
  • loss of calcium from the bones leading to osteoporosis or fractures
Now on to treatments:

Radioactive Iodine Treatment (RAI)
  • The thyroid is one of the few glands in the body that takes up iodine so radioactive labeled iodine destroys the thyroid gland.
  • given in pill form
  • do not have to stay at the hospital for any time
  • takes 3-6 months for full effect to be seen
  • isolation. Need I say more. My doc said only a few days, but mostly everything I read says up to 5-7 days
  • a second dose may need to be given
  • those woman who are pregnant or desire to become pregnant within 1 year of treatment should not do RAI
  • can damage the growth of the body, brain and thryoid of a developing fetus
  • will enter a mother's breast milk during treatment (not allowed for 1 year after treatment)
  • usually only affects the nodule but can effect the "healthy" tissue of the thyroid and cause hypothyroidism
Surgery
  • removal of all or part of the thyroid (mine would be the right half of my thyroid)
  • resolution of the hyperthyroid state occurs within 1-2 weeks
  • risks associated with surgery such as bleeding, 
  • can lead to hypothyroidism =  lifelong thyroid hormone replacement pill/medication
  • provides a long-term cure
  • usually a 23 hour hospital stay
  • small risk of injury to structures near the thyroid gland in the neck including the nerve to the voice box
Anti-thyroid Medication
  • common drugs are methimazole (which I am currently on) and propylthiouracil (PTU), which both interfere with the thyroid gland's ability to make it's hormones
  • when taken faithfully, these drugs are usually very effective
  • side effects: rash, itching, fever (but, rest assured, they are very uncommon--I haven't experienced any... but I've also only been on the meds for 2 weeks)
  • can develop liver inflammation or a deficiency of white blood cells (very rare) (watch for yelllowing of the skin/eyes, a high fever, or severe sore throat)
  • if stop taking, underlying hyperthyroidism often comes back (does not = a cure)
  • docs in the US do not advise their patients to use this for a long-term treatment


Resources (websites where I have gathered my information):

Wednesday, August 24, 2011

Things We Have Been Up To

Monogram painting - Celebrating a friend's engagement.

My first Braves t-shirt.

Our First Braves game of the season.

Ordered some wedding prints and bought some frames. Now to hang them...

A picture for Jake's toolbox at work.
And just working... 

Wednesday, August 17, 2011

Oh little thyroid nodule...

How is it possible that it is wrecking such havoc on my body?! Silly little nodule.

I had my doctors appt yesterday. It was pretty uneventful besides talking results from my thyroid uptake and scan and touching on options. The doc said my options are medication for now (not really great to be on them long-term) and surgery or the Radioactive Iodine Treatment for the long-term. He told Jake and I that we don't have to make a decision right now because he likes to "let his patients be on the medication and have their levels even out so that they aren't as fuzzy anymore". Man, let me tell you, I thought I was just getting old and couldn't remember anything or concentrate well. Nope, this little nodule is even causing me to have memory problems and trouble concentrating. It's been hard working with my clients in their therapy sessions... Anyway, Jake and I haven't made any big decisions about what we want to do yet. I am leaning toward surgery, Jake is leaning toward RAI. Both have their pros and cons. When I get caught up on my work and can concentrate better on making lists, I'll get them up here.

So, what I officially have is a toxic nodule. Basically, it is a growth (cyst) on my thyroid (the right side) that is over-producing thyroid hormones. The most notable symptoms for me have been the heart palpitations and noted tiredness/fatigue (I'm talking, bone tired here, not just being tired--sometimes in sessions with my clients I have to explain to them that my yawning is definitely not them or my lack of interest. They have all been very understanding and awesome about it but I haven't self-disclosed what is going on. I am sure that I will have to warn them when I decide which treatment we'll go through), as well as heat intolerance (there went my summer!), nausea and shaky-ness.



Other symptoms? Check here. I have most of them... minus the weight-loss. I experienced weight loss when I was sick right after the honeymoon and couldn't keep anything in me and wasn't eating much... but it has leveled out again and I haven't gained or lost.

Good news? As I mentioned before, I will be "cured" and will be able to start feeling "normal" again. I have an excuse not to work out (but I miss it). And, we finally have an answer of what the heck is going on with me. Only took almost 3-months!!

Anyway, we don't really have any other updates. We've been sort of laying low this summer due to all my health stuff. I told Jake that next summer better be amazing since we have completely missed out on this one... He said we'll see. We are trying to save up for our "amazing" honeymoon next year--although it will be our 1-year anniversary trip instead :P We'll see how that goes and what happens. I am so ready to move forward. I feel like things are held into place right now. Not fun. We are getting there though. Slowly but surely.

Tuesday, August 9, 2011

I haven't updated in awhile. Although, I am sure you all could see that without me pointing it out :P Just seemed like the most obvious opening...

Jake and I have officially been married for 3-months (yesterday). Time sure is flying by!! Other than getting married and our amazing honeymoon in Florida, this summer has basically sucked. Besides being grown-ups and not having a summer break anymore (anyone see a job in the school system for me in the future? As a school social worker? Yes, please!), I've been "sick" for the entire summer. Not sick as in ::cough, cough:: ::sniffle, sniffly:: but the kind of "sick" that no one understands or really sees as "sick".

You ask for me to explain? Well, here is me 2 weekends ago when Jake and my brother, Jason, went skydiving (uh, why didn't I go you ask? hahahahaha, no thank you. I am afraid of heights and that feeling of invincibility has long disappeared!!).
Yes, I don't look very sick, huh?
Jason & Jake after skydiving. Yea, they had fun!! I was waiting contently on the ground.
I don't look sick, do I? Aside from the nausea (I'm not pregnant!), loss of hair (yes, I am losing my beautiful, long, thick hair--insert tears here), heart palpitations, and general exhaustion, if you saw me out in public, you would not think that I am sick at all. Or at least feeling like complete crap about 90% of the time.  Yes, poor me. Poor Jake. I wonder if he still would have married me if her knew I was going to fall apart after the wedding?? He says he still would. I am the luckiest girl in the world, btw. He doesn't always understand that I'm not feeling well, but he is trying so. very. hard. And he has been extremely patient. Gosh, I love him. And I am the luckiest girl in the world (if you didn't catch it the first time).

Long story short: I have a nodule on my thyroid. And my thyroid levels are all sorts of messed up. First off, they think that I have hyperthyroidism, which I giggle at every. single. time. they tell me because I clearly have weight problems and I had the hardest time losing weight before the wedding. Seriously, I worked out and ate well for at least 6-8 months before the wedding and still did not lose a single pound. Yea, you read that correctly. I did not lose a. single. pound. It wasn't bothersome until I ended up barfing my brains out on the last night of our honeymoon and ended up sick for 3-weeks. They think I had a viral infection, but they honestly have no clue. They find out my thyroid levels were high, found the bump/nodule on my thyroid and referred me to the endocrinologist. The rest is pretty much history from here on out...

Today is the day of my thyroid uptake and scan. For the past 5 days I have been on a low sodium diet--this means, no eating out, no dairy and all home cooked meals. Isn't much of a change for me, but all we have in the house is iodized salt and lots of salt filled foods (like non-fresh meat--prepackaged chicken, beef, etc.). It's not that I can't eat salt--I can, just has to be non-iodized. So, it's been interesting. I think I've lost a couple pounds... oh! which reminds me, I lost 10lbs in the 3 weeks that I was sick. Go figure. A "jumpstart" to my weight-loss. Thanks body.

Anyway, I went earlier to the hospital this morning to take the little radioactive pill that will "light up" my thyroid for the scan. I have to go back at 2:30 for the actual scan and then back tomorrow morning for another scan. This will show how my thyroid is/is not working. I italicized 'is not' because I am assuming it is not functioning in the correct manner... it's all sorts of messed up. I'm not radioactive. The pill they gave me was not enough to take any precautions or anything along those lines. I am experiencing some mouth/throat dryness and my teeth felt very strange at first, but I have just been drinking lots of water and iced tea and bought some lemon drops to suck on to help with the dry throat.

Oh. And I got a new endocrinologist. He is moving much faster, is much more professional and actually had a game plan after meeting with me only once.

Welp, it's almost time for me to go back to the hospital. I feel like an escaped hospital patient today--I'm walking around with a lovely patient wristband on my wrist today :P Sooooooo fashionable.
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