Time for an update. I haven’t checked in for a while and there are a few who have been asking about me and how things are going, especially since I have been AWOL from church a bit lately. You, my friends and family have been so sweet and caring. Thank you again.
I’m at a stalled point right now in my treatment and I have some questions that haven’t been answered to my satisfaction as yet by my endocrinologist right now. I have been going in for periodic blood draws to check my TSH level. It is supposed to rise to a point where the radioactive Iodine treatment will be most effective. My doctor wants it between 80 – 100. The first few weeks I was rising at a regular pace....30....60....then a slowed.....66.....then last week it went in the wrong direction to 64. What the heck?! For most people this process takes around four to six weeks and then the “Rai” treatment is done. I’m about 8 weeks post surgery now and still waiting to have my radiation treatment and be able to get on medication that will level out my body chemistry back to a more normal state.
Meanwhile, yes, I feel pretty darn crappy as I sit in my hypothyroid state. Please excuse me for taking the opportunity to publicly whine for a bit but it might help give anyone else who may have to go through this an idea of what happens. All the support blogs call this state “hypo hell” and although I could very much be worse it is not very fun. Here is a description of what it has done to me:
I have zero energy. By this I mean that doing the dishes I have to take a break in the middle to sit and rest a bit. Carrying a load of laundry up the stairs leaves me winded. My face is all puffy and swollen. I don’t as yet look like a complete freak, it still makes me self conscious to be seen as my eyes are so puffy and it extends down to making my neck really swollen. My hands are swelling so I am unable to wear my rings right now. My knee joints are getting swollen and ache. I have odd muscle spasms and cramps. My feet are cold. Loud noises like my dogs barking send me through the roof. My brain and thought process is very muddled and foggy so that I have a hard time searching for the right words. My taste is off a bit and things that should be sweet are slightly bitter. Most of the day I have this yearning to just lay in bed and either sleep or watch TV. Reading sometimes is even too much effort as I have to struggle to comprehend what I just read. My mood is hanging in there, but depression is a common element with this. I have my moments, but I don’t sit and weep. Mother’s Day was a bit hard for me to deal with being alone and away from all my family and my children.
So for those of you wondering how I am doing, you can stop here with this paragraph. Yes, I am surviving and enduring, but I feel like crap. I can still function and get around and do the minimum of what is needed for daily life. Beyond that I have to just put on hold anything that isn’t necessary. It’s all going to just take time to get back to normal.
For those who are interested in treatment details, feel free to plod on through the rest of this.
What my doctor has recommended is a new ra thyroid scan on Monday to see what remaining thyroid tissue is there and if this is interfering with my TSH rising adequately.
This is where my questions come into play. I’ll be seeing him on Tuesday so hopefully will have some more answers then.
I am told that there is always some tissue left after surgery as it is impossible to completely get it all, so won’t that show up anyway on the scans?
If there is tissue left, won’t the Rai treatment destroy that anyway?
What would change in my treatment plan if there is more tissue than you expected showing up on the new scan?
Would you want another surgery to remove that also?
There are protocols that I am studying that find a TSH above 30 is all that is needed for Rai, why do you feel that it would be beneficial have a level of 80 – 100?
There is also a synthetic TSH (Thyrogen) that can be given by injection that many others say works as well, but at our first appointment you indicated it doesn't work the same, but would my case warrant this?
How long can I go in this hypo state without endangering me going into a myxedema state and or coma?
I have recently found a forum for Thyroid cancer friends which has been very helpful and it’s nice to be able to help others and get some advice for me in return. If you are reading this because you are going through the same thing, you can find it here:
http://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/discussions/
I hope that this post is coherent enough for you to understand. Again, I hate to come across as whining. If you made it this point and are still reading, I give you kudos for enduring through this long post.
I have had some really incredible personally touching experiences. I will one day put out my post on those. They are things that came to me very unexpectedly and are a bit tender for me to write about as yet. I do want you to know that I feel so wonderfully blessed by my Heavenly Father directly and indirectly through your love and support as well. He is real. He listens to your prayers and is waiting for you to ask for His help in whatever you might need. Jesus Christ truly did come to this earth as God’s son to take upon Him our weaknesses and make it possible for us to progress.
Be happy today. It’s your choice. No one can take that from you.
Now, it's time for a nap. zzzzzzz.......
