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Back to the old drawing board...

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Old 08-15-2003, 08:00 PM   #1
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Join Date: Sep 2002
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ringbearer HB User
Thumbs down Back to the old drawing board...

Sorry I don't have time to catch up on posts before I put this, but I just haven't got the energy at a TSH of 111 (that was on Monday!)
Some good news and some bad.

Good news for Ddea... the bump I could feel on my neck last week turned out to be scar tissue. My surgeon felt it and was certain of that. He did not want to do a biopsy and felt there was no need for further surgery at this point in my case, as there was no tissue visible on an ultrasound.

The bad news... the reason I was seeing my surgeon again was that I had small, low level uptake in my neck on my scan, which I finally had on Wednesday. It is "on the midline, as slightly higher than would be expected for typical thyroid parachynea. This could indicate metastatic cancer, pyramidal thyroid tissue or whatever that word is for center of the thyroid tissue." In other words, we don't know if the tissue is cancer or not, but it is suspicious and we won't be taking any chances. No other parts of the body showed uptake, and no lymph nodes.

I will be having another I131 treatment on Monday. I'll be in the hospital going through the exact same process. I'm simply inconsolable. I have been mislead, mistreated, and generally misinfomed. I was told initially the report looked good and I broke my LID for two meals before I saw the doctor and found out the truth.

No questions really to post. I just feel so sorry for myself. I feel so sorry for my family! I feel like they just don't have all of me anymore, and I don't know if they ever will.

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Old 08-15-2003, 08:56 PM   #2
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hilery79 HB User

I am so sorry to hear your news. I was praying that your scan would turn out clean. I can imagine how horrible you must feel right now. Hopefully this will be the last RAI treatment you'll need to have.
You and your family are in my thoughts and prayers.

Old 08-15-2003, 10:09 PM   #3
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Iwannalife HB User

Ringbearer, That's just your TSH talking. You'll be fine. We'll all pray for you. Hugs, IWL

Old 08-16-2003, 09:53 AM   #4
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I'm sorry you feel so bad and the scan didn't have a better outcome.
Hope your problems get sorted out and that you'll feel better very soon.
"We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses." Abraham Lincoln

Old 08-17-2003, 08:02 AM   #5
Join Date: Sep 2002
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Aimee8396 HB User

Ring, Yikes!! Now I'm nervous, we've been so identical in our diagnosis I'm nervous for my follow-up. I understand how you're feeling. Please try and keep up your spirits. Good luck with RAI, and let us know how things go. How are the kids handling this? Your family is in my thoughts and prayers. Aimee

Old 08-17-2003, 08:34 AM   #6
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kael HB User

Just wanted to lend my support and prayers - after being so sick for the last few months, it is so easy to feel sorry for myself - then I read a post like yours and think I really have nothing to complain about! Hang in there, your feelings are valid and we are all here when you have enough energy to visit and vent.

With Love,

Practice Compassion...Heal The World
Practice Compassion...Heal The World

Old 08-17-2003, 12:32 PM   #7
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ringbearer HB User

It is my personal opinion (and I am not a doctor, I just play one for myself in the absence of any other competent one), that my endo let my TSH stay too high for too long after my treatment.

This, in fact, is exactly what I was afraid of! I'll bet you recall that from my posts. I was hypo for about 6 months after my treatment. Your doc was much more aggressive on this point, and you'll be better off for it, even if it causes some stress to your body. I will INSIST on Cytomel (T3 is suppose to feedback to the pituitary to stop TSH) and a hefty Synthroid dose to kick start me back to a low TSH, fast. It has its risks, and it may make me feel bad, but it would be worth it if it shuts down the tissue growth right away after treatment. I am deeply worried that if I am inclined to re-grow tissue, what is to stop me from continuing to do just that? RAI kills thyroid tissue, but it doesn’t stop you from making more if you keep doing it.

Since you were not hypo for long after your RAI, I don’t think this will happen to you. So, heads up to those of you going into this process. Make sure your doctors know about suppression therapy (making sure you are borderline hyper as soon as possible after RAI), and then watch that dosing to make sure they are getting you there.

Fortunately, I have the best family support. My hubby is great. He cooked for me all day and is taking total care of me. My kids are off with some good family friends this time. They are so strong. They are so good. I feel like such “darkness” in their lives right now. You know, I have a good life. I guess too much goodness just isn’t allowed in this rotten world.

I’ll ‘see’ you all on the other side of this – thanks for your thoughts & prayers!

Oh… I hate this…I hate this… I hate this…

Old 08-18-2003, 08:56 PM   #8
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aww, ringbearer, you'll pull thru', just as you always have ... i'm hypo, so have no experience of this particular thing, but i nearly committed suicide i was so depressed for nine months (legs ached, depressed, yadda yadda, you don't need to hear my symptoms), and yes, i had very poor treatment at the beginning ... so few MDs know how to treat thyroid disease WELL ... seems we women must take our treatment into our own hands ...

i'll think good thoughts, send them to you ...

keep the faith ...

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