Those who prepare for RAI stop taking their meds .. How does it feel to go Hypo for RAI, etc. ...

[ChitChatNine]

Please, if you'd like -- share with us your thoughts, emotions, feelings before, after, during treatment as you had to stop your meds ... It must be so very difficult to do this ....... for those who haven't had to do this, perhaps, we can get an idea of what you go through emotionally and physically so we can lend hand or send a {{hug}} for another day as you await your treatment .. is it typically 6 weeks no meds?

Cheryl

[shannon828]

Once and for all:  Thyrogen (produced by Genzyme) is FDA approved for ablation as of 12/07 (http://www.medicalnewstoday.com/articles/92042.php).  If you Dr. tells you otherwise he or she is ill-informed.  I think in very advanced cases where there is a lot of cancer cells to kill they might want to be completely sure that you absorb every last bit of RAI and only then might request that you go Hypo rather than get the shots.  In side-by-side testing the uptake was very similar in those that went Hypo to those that had the Thyrogen shots.

I have Blue Cross Blue Shield and I was told that they will cover the Thyrogen shots as long as they are administered in a doctor's office.

We have enough to deal with cancer **** to additionally have to feel like complete doo doo for a month before swallowing RAI and being isolated from our families.  I'm sorry, I agree- it's barbaric.

[imedicmommy]

I'm glad to know i'm not the only one. I am SO, SO very glad that you all are here. Thanks for the notes of encouragement. I asked about thyrogen and was told it was not FDA approved for RAI purposes. Next time I may insist on it. I don't know if I can go through this again in 6 months. I was just starting to feel like I was getting my life back in December when I had a thyroid dump and suddenly my TSH was in the 30's in January. Now going through this again. My husband, when he's feeling honest, says he just wants "me" back. I do too. Part of this, I know is that I won't come out of this the same person. Hopefully, it's a better, stronger person. For those of you getting ready to do RAI or thinking about it, taking the glowing pill is easy. It's the weeks beforehand. Thank God for all of you. Seriously.

[utahmomma]

Freezing cold and absolutely no energy.  The worst thing was the depression.  I'd cry or scream for no reason.  I seriously felt that if I had the energy to climb to the roof that I should jump.  Hypohell is an understatement - the depression is *horrible*.   My TSH was over 76 after just three weeks of no meds and being on the LID.  The depression didn't start lifting until about 6 weeks later and that's about the same time that they started me on Celexa.

Thank heavens for Celexa and thyrogen - maybe it will make this time easier (*if* I can get the thyrogen for treatment dose).

Oh, and the after effects from the RAI aren't much fun either (arthritis, bone pain, weight gain . . . )

[Venora Moonwind]

I was sooo depressed ,misrable, blurry eyed. my boobs grew and they felt like I was pregnant. the body aches I am never going to hypohell again. I too am getting the thyrogen shots for my
rai in May. I do not understand why docs make you go to hypohell when you can get the thryogen shots. Its is barbaric to make you go thorugh that when you dont have to. I wish all the docs that make you go to hyp[ohell would go themsselves and see how they like it.
I bet they would think twice and get the thryogen shots. Ok I am done Off the sop box.
Love Venora

[AR-10]

It sort of depends on what your body has been through.

I was working at diminished capacity the day they called me and told me my TSH was 120, 4 weeks off meds. I felt awful, but I was moving.

When I got around to the actual this-time-for-real RAI, the plan was to go six weeks without meds. My Endo cut it to five weeks, because my TSH was above 30 by week four, my uptake scan was very good, and I was extremely ill.

It was 100 miles to the hospital, and we drove down the day before and slept in a motel. They wanted me there by 8:00AM, and I knew I couldn't get up early enough to make that, and the uptake scan the week before was a round-trip day, two days in a row, which left me sick for days. So, we split the trip in half. That helped.

I was a mess, physically and emotionally. I couldn't care for myself, other than showering, which I was reluctant to do without my wife within voice distance. I couldn't drive, I could barely handle riding in the vehicle. Couldn't look out the windows.

My digestive system was not, and filling out paperwork seemed daunting. My sleep patterns were already going bad, and I had insomnia for a few weeks after RAI. Mentally I was about half there, and decision making was defferred to my wife.

Spending a few days in bed during isolation was not a problem.

It sounds horrible and pathetic, but the six months prior to that were very hard on my body, so the experience was worse than it might have been.

I don't think I'm as tough as some of you girls. :-)

[imedicmommy]

Besides the cold and fatigue, the biggest thing for me is the nausea. It's getting worse now that this is the 3rd time in 6months I've gone hypo. Now I'm actually puking. Zofran and Reglan aren't helping much. Plus my husband and I always seem to fight a lot during this time. He lacks patience in a major way and gets tired of hearing how tired I am. It's frustrating for the most part. I can't seem to get anything done, I'm tired and my husband doesn't seem to have much sympathy at all. I'm just tired of it all. I feel like I let a lot of people down and have to apologize a lot for having cancer. I sometimes wish that they'd never found it. Sorry to be a downer I'm just so tired of dealing with this.

[nissah46]

I start the low iodine diet tomorrow, but don't have to go off my meds. I get a Thyrogen injection on April20th and 21st.I feel very lucky to get this drug as people I have talked to say they feel  extremely tired during this time.As far as being on the LID, you have to be prepared because you can't grab just anything when hungry.I make a salad dressing from the LID cookbook available on line, so it is ready in my fridge when I need it. I can't find Matzo crackers in my area, but they are likely available in larger towns.Today I found a salt free organic pasta sauce, so it will be that for lunch tomorrow.The thing I miss the most is yougurt, as I eat it twice a day.

[Liz94]

I went 6 weeks with no meds but I know some others here only have to wait till their TSH gets over 30. Mine went waaaaay over 30!  I didn't feel any different till about week 3. I felt deep muscle fatigue, I was cold, pretty lethargic, lots of indigestion, constipation, just generally a feeling of "blah."  I remember going to Target with my husband at some point during that time and he was walking and I couldn't keep up with him, my legs just hurt so bad. He told me to "come on" and I broke down in tears right there in Target. I just felt so horrible. That was towards the end though.  Then the day I had my RAI, I could not focus my eyes any longer, my face was swollen, my eyes were dried out, my hair was brittle and I drove 45 minutes all by myself on the freeway to get the RAI! A little scary but I made it through. I definitely do not recommend being off meds for 6 weeks. I don't think it's necessary and it's pretty uncomfortable. I could not work during that time, it just wasn't possible after week 3.