Vocal cord paralysis, thyrogen and cytomel questions

In November 2012, I was diagnosed with papillary thyroid cancer. TT done on December 4th. Cancer was present in all lymph nodes removed during the surgery.

I have had quite a recovery, certainly not text book. Does cancer have a text book?

Anyway here are my questions:

1) I am still having a lot of trouble with my voice. I, like many here, need my voice to earn a living, as well, talking just wears me out. I get light headed, tingly from the over breathing I just do just to push enough air over my vocal cords to get words out. Further testing shows the right vocal cord is paralyzed. I have decided to have the Radiesse injection to temporarily help my issues. I had the videoscope this morning and surgery tomorrow, Tuesday, 2/15/2013.

Does anyone have any experience here? Am I being impatient?

2) I also would like to ask for some feedback for Thyrogen versus going hypo for initial RAI with metastasis in lymph nodes. I have pretty much concluded that I will go hypo because of the risks and undocumented certainties about recurrences using Thyrogen.

Assuming I go hypo, what is the protocol I should expect. I hear about Cytomel. What is that? What does it do?

3. Does anyone in the Kansas City area have a GREAT endo that they recommend? I am not necessarily unhappy with mine, he just does not seem to have the experience I would like to see him have specifically in this area. He did however, come highly recommended by my otolaryngologist.

Thanks to all who read and help this amazing community of cancer patients. It has been invaluable to my journey and finding my way through all the complex issues associated with Thyroid Cancer.

Edited January 14, 2013 at 11:50 pm

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As for the vocal issues I had the same problem, however, my voice got better after a month. However, I was able to refrain from talking during the day for a month and that may have really helped. I hope your procedure goes well.

I personally, would not go hypo. I had Thyrogen shots and only had 29 MiC. However, my daughter didn't have Thyrogen shots and her TSH got to 166 and she was horribly sick. It took her about 4 or 5 months before she felt better afterwards. I don't know how severe your case is but she had 1 and 3 cm nodules, lymph node involvement and the nodules were not encapsulated. Others may be able to give you more scientific data regarding the use of Thyrogen. I consider it a god send.

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Sorry to hear about your voice issues. You are only 5 weeks out of surgery, so I would give it some additional time to heal. Stay hydrated throughout the day and keep water next to your bed during the night. For my RAI, I had the thyrogen and they were fine for me. I have heard that going hypo is not at all easy and it will become difficult to function. If you must go hypo, then do ask your endo about the cytomel. they are T3 only and I have heard (I have never taken it) that it helps alleviate some the the hypo-ness. It is short lived and does not stay in your system long. I do not know if all endo's use the cytomel or if there are some cases where it is not a good match. that will have to be decision of your doctors. good luck to you.

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I don't know from experience, but I've heard Dr. Graves with KU MEd is good. I am in KC area (Nice to meet you!). I personally go to Mayo Clinic though, as it is not a bad drive for EXCELLENT care.

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Hi, I had the Thyrogen last week in prep for the RAI. No problems at all. Was very nice to be able to avoid hypo. Looking back to the TT, my voice was weak at first, but has pretty much returned to normal in a month. Experiencing different problems, relating to swallowing after the TT, resulting in further tests and PT. I wish you a speedy recovery.

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When going hypo one of the protocols involves cytomel. That protocol is something like 6 weeks total with 4 weeks on just cytomel and last two weeks on nothing. Your protocol may vary. Cytomel is T3 and does not stay around all that long compared to T4, so that is why they use it the first four weeks as it quickly disappears after that. Taking cytomel without T4 is not really that fun but sometimes it can be at first. The more and more the T4 tank runs out of gas the T3 can give a fairly significant "run-out" feel. To over come the run-out I might suggest as you get into the protocol to take what they say spread out over the day. So if you are given 50 mcg cytomel, spread it as much as you can (with bits and pieces or halfs or quarters) because that helps stop that run-out that will have you feeling great then boom it runs-out and you become a unhappy camper or sorts.

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Going hypo is the worst thing ever!! you basically become demented and your mind is in a fog and u have to concentrate just to breathe. I was 30 at the time and had to walk with a walker for crying out loud- dont do this to yourself it will be the worst thing you ever experienced... I didnt have a choice when i was first diagnosed as thyrogen was back ordered and i would never do it again. Its not fun at all and takes 4-5 months to recover completely. Thyrogen is safe you dont feel the effects of hypo at all and it does the same job.

For the voice i have vocal cord paralaysis. My voice never recovered, I became a whisper and it took all i had just to say one word and have it be heard. I started with vocal cord injections to move the cord back into place then i had surgery to graft another nerve in its place which sadly didnt take so i m being scheduled for another vocal cord injection. But that is just me ... it can take up to a year for your voice to come back and if the surgeon said he didnt cut it (the nerve) then try your best not to fatigue it (ie choose your words and your battles carefully, stay off of long phone conversations etc), and use vocal cord injections in the meantime if you have to and hopefully it will come back. For many people it does. Take it one day at a time.

I wish you all the best and dont give up hope... one day at a time

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