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RadioActive Iodine treatment

lmkatz's picture
lmkatz
Posts: 6
Joined: Dec 2005

I recently had the left side of my thyroid removed, found out it was cancerous, and a week later had the right side taken out. I am planning on doing the radioactive iodine treatment in Februaury '06. Can anyone give me insight as to just how tired/weak I'll be during the 2 weeks prior to treatment when I go off the Cytomel? Will I still be able to work? I'm currently taking Cytomel twice a day and am finding that an afternoon nap is a neccessity.

Also, this low-iodine diet is freaking me out b/c my kitchen is being remodeled and I eat out for every meal. Any suggestions on things to eat that don't require an oven would be helpful! (I've got a microwave, but thats it) I have a feeling this is going to make it a whole lot rougher. Thanks!

Rustifox's picture
Rustifox
Posts: 131
Joined: Mar 2005

Once you stop taking the cytomel, within a few days it is quite likely that you will be extremely tired, your mind will slow (often to a snails pace), and some of us even see symptoms like fairly severe muscle cramping, nausea, etc.

Severe and acute hypothyroidism affects each of us differently, but it can be quite debilitating. You should NOT be driving once you are off the cytomel at all, though - that is terribly dangerous, as your reflexes are very, very poor compared to normal, and you will definitely be 'impaired'.

Generally, if at all possible, it is best if you take leave for the last two weeks before your treatment, and at least two weeks afterwards. It does take about 6-8 weeks for the hormones to get fully back into your system after an extended period of hypo, and it will be a gradual process of regaining your strength and mental acuity.

There is a very good description of hypothyroidism in this guide - page 4 is a good one to print off to explain the symptoms to your coworkers, and loved ones as well:
http://www.thyroid.org/patients/brochures/Hypothyroidism%20_web_booklet.pdf

Some people only suffer a few of the symptoms, others have those listed and even more - much to my surprise, I even started to stutter when I was very hypo, yet have never had a stuttering issue in my life!

While it isn't a real word, we become even 'hypo-er' after RAI treatment, so you can expect to feel even weaker, and possibly more symptoms after the treatment. As it isn't safe for you to be around others in any kind of close proximity for many days (4-7 days) following your treatment, it is a good time to get lots of rest - rent happy movies, and plan to completely veg out.

On LID friendly things with no cooking? Pasta can be cooked in the microwave, and is great for both reheating when your tired, or cold as a salad. Lots of ready made salads - there are some good LID friendly dressings in this:
http://www.thyca.org/ThyCa%20Cookbook%20011804.pdf

Salt free peanut butter, or avocados spread on salt free rice cakes are pretty good - or make the LID friendly mayonaisse, and spread that on the rice cakes. Lots of fresh fruits and vegetables, baked potatoes, microwaved (fresh, not frozen, as those are often injected with saline) chicken breasts sliced on salads work great, spiced with Mrs. Dash or LID balsamic dressing.

If you must eat out, only plain salads are your best bet, or a fruit plate. Often even vegetable plates have been cooked in salted water, and there is no assurance the salt was non-iodized. Remember, it is a low iodine diet - not low salt - you can use salt in your own preparations, but make certain it is NON-IODIZED salt only.

It is best to do the diet for the 2 weeks before your treatment itself, and then for 24-48 hours after your treatment, so it is only about 14-16 days maximum that it is needed.

There is a new Low Iodine cookbook available through bookstores/amazon - here is the info on that:
http://www.yourhealthpress.com/book_lidcookbook.html

It is best if you plan your meals, and do the preparations (ie freezing LID friendly muffins, bread, etc, if you can find someone to bake them for you) in advance. Once you are off the hormones totally, it is difficult to find the energy sometimes to even open the fridge, never mind prepare a meal, so it is best to get things ready to microwave beforehand.

All the best to you. There are lots more ideas available in the archives of the Thyca group, too:
http://www.thyca.org and the group support listserve is located here:
http://health.groups.yahoo.com/group/Thyca

FenwayS
Posts: 11
Joined: Jun 2005

Hi,

It is hard to say how tired/weak you will be because this affects everyone differently. I was quite surprised to find that I didn't feel nearly as bad as expected. I did have some muscle cramps and some days where I was more tired than others, moved slower. But I never had a day where I couldn't get up, do all the normal things, including drive (I was never told by my doctors not to), grocery shop, run errands, take care of my children, walk them to school, etc. As far as work, that probably depends on your job; what type, how demanding, etc. Note: This was BEFORE radiation. After was quite a bit worse for me.

Something odd that I have found is that even though I didn't feel that bad during my "hypo" period, it has taken me quite a long time to feel normal again. My surgery was in July, treatment Sept/Oct. and I am still trying to get back to normal. I have no problem taking my three mile walk, yet I have a hard time with more than one flight of stairs and still have problems with my legs. May or may not be related...Still working on it...

As far as the low-iodine diet, it can be difficult if you do not have access to a stove/oven. I got many of my recipes off of the thyca.org site. They have a low-iodine cookbook. I don't recall if there were meals that could be prepared without a stove or oven but they do have a list of things to eat and things to stay away from. If you are able to use a stove (or an electric griddle) try the pancakes - they're really good!

If you have any questions about the radiation therapy itself or what happens afterward, I would be happy to let you know what happened with me. There were a lot of little details that needed tending to - and some big ones - that I wasn't aware of beforehand, regardless of the questions I asked or the research I did. If I can be of help, let me know. I wish you the best and GOOD HEALTH in the New Year!

Fen

Stilltalkin
Posts: 10
Joined: Dec 2005

Fen,

I am having the radioactive iodine treatment in January. Had total thyro on Nov. 25th. Not on any meds. Just hypo like crazy.

Any information you can give me regarding the process of the rad would be helpful as well as any problems, changes you had as a result of this treatment.

I have a very good doctor, just still not very sure of what I might expect. I know everyone's different, but am keeping a log of possible things to watch for, be prepared for, etc.

I read your other post about the damage to your vocal cords. My condolences and prayers to you as you recover. I hope you find the answers you need to reclaim your life.

Thank you,
Marti

lmkatz's picture
lmkatz
Posts: 6
Joined: Dec 2005

Thanks for your input!
Fen, I hope you find answers to your vocal chord problems - that sounds very difficult. I am also a musician (I play the violin and viola professionally), so having to keep the instrument off my neck for a week or two following my surgery was difficult for me. I hope that you will be able to sing again soon.
I would love to hear about any advice you have to give about the RAI treatment, or what to prepare for etc. Good luck!

cravtap
Posts: 11
Joined: Mar 2006

I have had 3 treatments and wonder when it will end.

cravtap
Posts: 11
Joined: Mar 2006

I am also preparing for my 4th radioactive iodine tratment. I just read your post about havu=ing a treatment in Feb. so i am sorry I'm late with my feply Please let me know how it went by writing to cravtap God bless and keep the faith Yours Patti cravtap

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