I had my thyroid removed last week. Papillary cancer. My doctor says that I need to take one treatment of radioactive iodine.

I have CFS/ME. I was wondering what this was going to do to me.

I've also heard that this treatment can damage your salivary glands and cause you to have dry mouth. I'm a music teacher so I'm talking and singing all day. Will this treatment affect my ability to do my job?

Thank you in advance for all replies.

Sorry to hear about your TPC. Good to have gotten the surgery done.

Be sure to stay on top of your calcium levels. They parathyroid glands that control calcium homeostasis in the body are sometimes traumatized during thyroidectomy. Calcium levels out of whack can make you feel really bad ... even be fatal.

Eventually you will need thyroid hormone replacement therapy. It may take a while until the dose is stabilized. Read & learn all you can about thyroid hormone testing & replacement.

If you do suffer the dry mouth syndrome, look into the Biotene product line (toothpaste, gum, mints, spray, mouthwash) and other similar products.

It's hard to know in advance how a given individual will respond to RAI. You may notice some changes in the short term, however over the longer term of healing, things may improve.

I have family with thyroid issues, haven't had to go this route myself, yet. Please let us know what your experiences are. I'm esp. interested in how the RAI interacts with any muscle pain you have.

Best wishes.

I have an appointment in a week. I guess I'll know my options then. I will keep you updated.

I do have to take the radioactive iodine. I will be going in on Feb. 3.

Following the low iodine diet begins Saturday. Stopping the thyroid supplement begins Saturday. This is going to prove interesting since I went back to work last week. I'm thinking I'm going to be sitting a whole lot more than I usually do (which is a whole lot now!)

I can't wait to see if I can glow in the dark! lol

Sorry to hear about your Thyroid cancer. Please go to Yahoos Thyroidless group before you go through with the RAI. iMany there have alternate suggestions.

I wish you well.

I didn't have a choice about the radioactive iodine. Oh well, I did try.

This iodine-free diet is frustrating, especially since I'm already gluten-free!

But that's Ok. I have a couple of friends watching my diet much more closely than I am! lol

Surprisingly, it's been really cold here and I'm usually in a lot of pain and can't use my hands too well. For rightr now, I'm just having trouble keeping warm. So, I guess there is a silver lining here.

I'll update again sometime late next week.

Getting weak here. Hands going first. If I have to open a bottle or jar, someone else has to do it. Knees are aching now. Got home early from school today and got right into my pjs. I think I'll go to bed now.

I think the first thing I'm gonna eat next Wednesday is a Quarter Pounder Value Meal, minus the bun with REGULAR ketchup, and a Coke. It will be followed by a Cadbury chocolate bar.

Don't they know that you should never tell a female that she can't have chocolate?

Later!

[This Message was Edited on 01/27/2009]

I'm thinking of you & hoping your RAI procedure goes well.

My brother who had this done said the scariest part is when Darth Vader walks in. The med pros have to wear a lot of shielding when they bring you RAI.

You sound like you've got a really terrific attitude. That will help you immensely. And friends to help you along as well.

We got McDonald's coupons in the mail yesterday. Should I save them for you? I'm on GF diet as well ... hardly ever go to the golden arches.

Take care.

I get to see Darth Vader? Hmmm. I wonder if he'll give me his autograph.

It's Thursday morning. I'm not as tired as Tuesday. We got hit with the snow and ice, so no school yesterday or today. Yippee!!

Haven't done a thing toward cleaning my house, but then, I'm kinda sure it's not going anywhere soon.

Thanks for the coupons. You might want to save the pizza ones too. I have no idea why I was dreaming about pizza last night. That's the LAST thing I need to eat! But it's OK to dream.

Strangely enough, I find the thing I'm really missing is jelly beans. I was told to avoid Red Dye number something. Of course, my mind isn't working so I can't remember which number, so it's easier to avoid all red dye. That knocks out jelly beans. How corny.

Well, it's back to the chicken and rice I managed to cook yesterday. It's acutally pretty good. Then, maybe, just maybe, after an hour nap or so, I'll get up and wash the pots from yesterday! lol

Happy Snow Day!

at most health food stores. Sometimes in the bullk section. You may have to ck to make sure they are free of barley malt.

Pizza sounds good. Must be all those super-bowl ads I'm seeing on TV.

I've noticed over the last three nights that I sleep really well until about 12:30 a.m. Actually, I pass out about 7:30 p.m.

Anyway.

I wake up around 12:30 and I realize that I'm kicking my legs like crazy. I finally give up and find something to eat so I can take a couple calcium caplets. I then sit up for hours until my body settles down and I can return to sleep. Makes for a long night. Only two more nights and then we'll see.

Talk about brain fog! Try going on a low-iodine diet! Fortunately, everyone in my world is used to me stumbling over words and being unable to finish my sentences. That practice as helped them to keep me focused or something close to it.

Don't try and make me remember anything new much less old. It ain'ta gonna happen.

I told one class this week that I was really tired. They volunteered to watch TV. Wasn't that nice of them? Since they were so kind I obliged them. Don't ask me what they watched. I don't remember. Schoolhouse Rock or something. I don't think it was ballet. They don't like anything but the Nutcracker and I don't have that at school.

My ability to spell has gone down the drain. I have to keep going back to fix things. If I didn't do that with this message, you all wouldn't be able to read this!

The nurse is amazed at how well I'm functioning at the level of exhaustion I tested at on Thursday. They don't know how tough us ME/CFS peoples are. We have lots of practice dragging ourselves through thick and thin! Hooray for us!!!

Anyway.

I learned something in all of this. (Never forget that every test is a chance to learn something new) There are certain beans you are not allowed to eat on this diet. I guess they contain too much iodine. Cowpeas are one of the beans listed.

Cowpeas? I had to look that one up. Who knew that the proper name for the black-eyed pea is cowpea?! I'm glad I looked that up before I started cooking the one pound bag that I bought! I would have been eating an illegal substance! lol

I dare you to look it up. There are more varieties than you can shake a stick at!

BTW, went to the health food store to stock up on my normal gluten-free supplies. I found a new brand of fish cakes, sticks and nuggets. Ian's uses corn. Corn kills my stomach. This brand uses potato flour.

I can't think of the name right now and I'm afraid to get up and go in the kitchen to find out. Lately I've been forgetting what I'm doing in every room I enter except the bathroom. That one's pretty easy to figure out!

Well. I'm off to see if I can get a bit of sleep. I know I'm punchy. I'm starting to make no sense even to myself!

Later

I think that stupid low-iodine diet did it. I can only sleep about an hour and then the RLS kicks in big time. I suppose that will settle as soon as I can get my multivitamin built back up in my system. The one I take has iodine in it so I missed my daily mega dose of magnesium and potassium for two weeks.

I think I shall send my parents to the grocery store tomorrow, er, today and have them bring me a bunch of bananas. It's smoothie time!

Other than that, I'm doing OK. Just tired and slow. But then, we expected that didn't we.

Finally cooked those cowpeas. Yumm.

Cooked the new fish nuggets. Yuck. Nasty. Will not buy those again.

Hands are slowly coming back! Yea!

Parents brought french fries today WITH SALT and REAL ketchup. Yum!

They took the trash out with them. Even better.

I forgot to buy hard candy to suck on to keep my salivary glands working, but I found I had those toothpick floss thingies, so I look like a hillbilly (I can say that since I'm a direct descendant, lol) all hours of the day and night. But what can I say. It's working.

I told my mom that I should have bought a binky since I'm following a baby schedule: eat, sleep, eat, sleep.

I am enjoying the chance to catch up on my reading though. It's very peaceful.

Happy Sunday everyone.

Miss Delicate Flower reporting for duty! lol


I forgot to say that I started Synthroid on Wednesday.
125 mcg is too much.

Yep, you read it right. MICROGRAMS! We're not even into the milligrams yet! lolol

I'm going to go back to the Cytomel and call my endo tomorrow. I have enough of that to do until I see him in a week.

How many mg's of Cytomel you ask?

25 mcgs. hee heee heeee heeee

[This Message was Edited on 02/08/2009]

during this whole event. Especially since I turned up the heat last Thursday! I figured that since no one was allowed in, it didn't matter how hot I made it. Between that and wrapping up in a couple of throws, I've avoided hurting.

Still having tingling in my hands. It's just my hands now. The tingles have faded from my arms.

Been sleeping better since I returned to the Cytomel.

Well, I was sleeping better until my CPAP blew up on Friday. Wasn't that nice of it to die on the weekend? Oh well, who needs sleep? I hear it's over-rated. lol

Called the sleep doc on Monday and had a brand new machine on Tuesday. Slept some on Tuesday and went for 12 hours last night. I just might make it after all!

The dry mouth is receding nicely. I'm relying less and less on the toothpicks. I didn't suck on one the last two nights, but I probably should have. I was so tired, I didn't think about it.

Full body scan is scheduled for tomorrow. It will be my first day out since Feb. 3. I will be driving myself.

Since I'm going out, I'm going to stop and see my chiro and get my hair done. Probably too much activity on the first day out, but I can't wash my own hair and I want to be sure I'm "clean" before I meet up with too many people.

I'll post when I get back and let you all know how that went.

Happy Thursday!

So you did do your RAI on Feb 3? Good to get that done. Glad to hear you haven't had too much muscle pain along the way. They let you continue taking your T meds??? Nice.

Tingles post RAI are sometimes calcium related.

Hope your scan went well & that you get good news ASAP.

Best wishes.

[This Message was Edited on 02/13/2009]

Had my full body scan on Friday. It was a 30 minute procedure. I was so relaxed, I went to sleep. Caught myself snoring! lol I was told that I wouldn't hear anything about that until later this week.

I did go to the chiro. That felt wonderful. Got my hair done too. Very nice.

Went to church on Sunday. First time in three weeks. I drove myself. I felt like I had to introduce myself.

Monday was LONG! I saw the surgeon, the sleep doc, and the endocrinologist. Whoo!

The endo drew blood to check my clacium levels. I should know something next week. He also lowered the Synthroid to 50 mcgs. Yep. We're still doing micrograms. I'll start that tomorrow.

School was kind of nice today. The kids actually admitted that they missed me this time. They liked the sub, but they're getting tired of not having their cranky teacher. I realize that that will only last a week, but I'll take it as long as I get it.

The tingling in my hands is getting better. I guess I just needed to go the chiro and have more time back on a regular diet.

Dry mouth is gone. My taste buds still aren't working like they used to, but that's OK. I guess it'll come back with more time.

OK, I'm going to go. I'm going to see if I can't get the dishwasher filled this evening.

Later!

I've been a bit moody most evenings. I'm told that's normal until I get used to everything. I have made progress though. I haven't cried yet today! yea!

I was hoping the old ME/CFS monster would stay away a little longer. No such luck. The hips started hurting this afternoon. Bummer. Now the left shoulder is kicking in. Oh well. I did have a reprieve.

My mind is still gone. It's like it got worse on the low-iodine diet and hasn't bounced back yet. I'm forgetting stuff that really should be remembered. If any of you see it, please send it home. I just hope I recognize it when I see it! :)

My mind is still gone, but I'm getting used to that.

My left arm is what's getting me now. It has gone back to being tingly and weak. Too the point of being numb at the shoulder by bedtime. Not good. I guess I wll have to call someone tomorrow morning.

Other than that and being tired, I'm fine.

I was going to tell you all something else, but it seems to have disappeared! lol

I guess that means it's bedtime!

Nighty night!

I go see the endo doc a week from Monday. Won't really know more than I do now until then.

There's more I want to say, but can't get my thoughts together. Maybe I'll try again tomorrow.

Don't forget to set your clocks ahead!

Enjoy your weekend!

Was so tired yesterday, could not rest.

Spent the most of today asleep. Just got up again about 20 minutes ago and noticed a difference immediately. The tiredness broke! Yippee!

CFS/ME tiredess and brain fog is a doozy when mixed with this hypothyroid tiredness and brain fog! It's tough dealing with one or the other, but the two of them together is really challenging.

I don't regret having any of this done, but it sure is tough hanging on to your sanity/positive attitude when you're so tired you can barely put one foot in front of the other.

I'm glad I have this board to come to. I can say what I'm really feeling and not have to skim over things because your family and friends worry more than you want them to. Everyone has their own problems, you know?

The trick tomorrow will be to not do too much. That's always my downfall after recovering from a crash. Getting excited because I feel like a human being again and trying to play catch up on everything that got let go.

Not going to stay up much more than another hour. Want to hold on to this good feeling as long as I can!

Love y'all!

Brain fog finally lifted this week. I read the Synthroid bottle again.

I should have said that the new dose was..................................

.05 mcgs!!!!

Sorry! lol

I go to the endo on Monday, so I'm sure that will be changed. I'll let you know.

Happy weekend!

I hope everyone is well. Life got a lot crazy around here and I haven't had the energy to post. Sorry!

I've been upped to 112 mcgs daily now. Have been on it for a week. I can't really say how it's going. Between the higher dosage and the fact that we have nine days before Spring Break, I'm doing good to still have hair! lol I'll have to wait a few more days and then I'll know.

So, other than it being the nutty time of year at school, my older sister moving back home due to housing problems, her boyfriend unexpectedly dying, my mother having to have eye surgery AGAIN, my niece having a meltdown in college, my dad struggling under the responsibliity that I usually handle but can't due to my own health issues right now, and my younger sister not being able to come home and help, I'm fine!

I have managed to keep my sanity by leaving things in God's hands. That and this really cute e-card I stumbled up on last weekend. I can really identify with the cow!

http://www.crosscards.com/cards/cardform.aspx?cp=1&iNo=7&No=275


What's up with you all? Everyone still hanging in there?

teacher

on your new dosage.

You certainly do have your hands full these days! I'll be thinking of you.

suggested Armour. WHich has t3 and t4 in it? Hope you are doing as well as can be expected. jam

I apologize for taking so long in returning. It got just a bit overwhelming here, dontcha know!

JAMINHEALTH:
I have spoken to my Endo a couple of times about Armour. He's not really receptive right now.
Thank you for your support.


EVERYONE:
Thankfully, my Internist is beginning to see the light. He was kind enough to drop the 112 mcg to 75 over Spring Break in April.

I went in to see him to get a new prescription for something else and was filling him in on everything. I told him of the struggle I was having adjusting to the Synthroid (actually, it's the generic. I can't say or spell it, but it starts with Lev.)

He wondered why I had been doubled instead of gradually increased. He then wrote for 75. I've been OK on that now for almost a month. Yippee! I see the Endo on May 20th. We'll see what happens then.

I had a ME/CFS crash this week. I was bummed at first because I had been quietly hoping that all of the excitement around here would fix that problem. I pouted for a few days and then I had a thought (don't say it! ;) ).

Yes, I had the muscle aches. Yes, I had the sore throat. Yes, I had the voice loss. NO, I DID NOT HAVE A FEVER! Yipee!

So I apologize about the griping I've done all winter. I'm not a very patient person. I want things done right and done right now! One of these days, I'm going to have to learn when to rush in and when to wait patiently. But, don't hold your breath! lol

So, I guess what I'm saying is that I've learned this winter that I AM human and it's OK to admit when you're weak. Sometimes, I've been a bit overboard with the with admitting weakness, but I guess I had to swing way out to see that I had gone too far the other way in not admitting that I needed help. I see now that I need to have balance, and it's hard, but I'll get there. Eventually.

I feel like I'm not making any sense right now. I know what I want to say and I don't think I'm getting it out clearly. I hope someone understands what I'm saying.

This whole time has been amazing. So much has happened in eight months. At the beginning, time stretched out endlessly. But using hind-sight, it really hasn't been that long. Sometimes, it's hard to see the forest for the trees, ya know?

I'm going to close now, before I confuse you all any more.

Take care!


P.S.
Good news! I have the full range of my voice back. I actually made it to church on Easter. I decided that I would try one more time to sing along. I could sing every note! My voice tired quickly, I wasn't very loud, and I sounded like a little kid, but I could sing! The first since December 9.

Hugs!

Spring Concert is over so today has been very quiet. It'll take a bit of time, but I expect to see a change in my energy level since that's over!

I go to the Endo on Wednesday. we shall see if I get to stay at 75 or not.

Happy weekend everybody!

Five more days with kiddies and one more after that for finishing stuff. Then, school's out for summer!

I went to the Endo on May 20 and got an apology! He said he was sorry for trying to jump me up too fast on the Synthorid. He said he understands now that I can't go that fast. Yippee! No more drug induced flares from him!

I have been increased to 88 mcg and I started Tuesday. Tomorrow will be a week.

Guess what?! I feel good!

This is the best I've felt since before surgery. I could get to like this!

Food is tasting better. Water isn't, so I'm having a hard time getting it down. Which, of course, means I'm having dehydration issues. Oh well. I'm starting to carry water bottles around, so we shall see what we see. (I do filter my water.)

My house is still a wreck, but in just a few short days, I won't have anything to do but clean. Can't wait. It's looking really bad.

So, that's what's new. I shall see you all later.

Guess what?! My scar is starting to itch! Yea! Healing is happeining there!

I've been using wheat germ oil twice a day.

Two more days and no more school until the end of August. Whoo hoo!

I've decided not to begin taking classes for my next certifiaction renewal. My new one kicks in July 1 and I have 5 years to get stuff done for the next one. I usually get started immediately so I don't forget, but I'll take a bit of a break first this time I think. ;)

Enjoy the sunshine today.

Our last day was Tuesday. I had a short staff meeting on Wednesday and then I had to go to get my baby from college. After I dropped her at my parent's, I went on home and went to bed.

I didn't wake up until Friday. (Well, except for potty breaks!) I was tired!

I stayed in until yesterday when I went to morning service. That was amusing because I forgot my medincine! I enjoyed myself, but I was glad when it was time to go home.

I saw the surgeon today. I forgot to tell you all that I had to get a shot in my neck in April. Sorry!

The scar wasn't healing properly. I was beginning to keloid. And it was hurting all the time.

(This happens ssometimes to darker skinned people. Your scar doesn't remain flat. It turns into a big bump and gets hard and stiff.)

The surgeon gave me a shot with something to take the puffiness out of the scar. A steriod I believe. He also used a local. BUT he mixed the two together! (The shot had to be injected into the scar. Six different places within in said scar.) Then said, "This is going to hurt a bit." Can we say understatement of the year?!

Miss Delicate Flower reporting for duty! I was sick before he left the room. He sent one of his nurses in to sit with me until I was OK enough to take myself home.

The left side of my face was numb by the time I got home. I cried all day, when I wasn't asleep. I wasn't looking forward to treatment #2.

It did take the swelling down quite a bit and it stopped hurting. I began using wheat germ oil about three weeks ago and now it's beginning to itch! Yippee!

But, as I was saying, I saw the surgeon today and he was listening to me today. (I have to say, in his defense, that he was distracted the last time I saw him. His sister had just been diagnosed with cancer and he was upset. It's just the two of them.) When I reported what had happened last time, he said that I didn't have to take the shot again unless I wanted to.

So, this is a good thing. He also did not try anything silly like jumping me up really high on the Lev..... whatever it's called. He wrote me a script for 100 mcg, but told me not to start it until he called with the blood test results. He even told me that I could alternate days with the 88 mcg and the 100's when I start it. Good! No nutty responses!

He said my TSH levels were still too high, but he's Ok with going slowly to get them down. He was really happy to report that my ..... I forget the word.... levels were negative. I asked for a translation.

I'm cancer free!

So, the saga continues, but only with the slow upgrade of the thyroid replacement medicine.

Thank you all for being here with me while I was struggling through all of this. I could talk to my family, but it was nice being able to come here and say exactly what was on my mind without having to censor for fear of upsetting my family anymore than they already were.

I love you guys!

So, my agenda for the summer: sleep, sew, maybe clean my house.

I think sleep is first for today.

See ya later!

Sleep - check

Sew -nope

Maybe clean my house - are you kidding!


One out of three ain't so bad. lol

Something new has occured. For the last two days, the salivary glands on the left side of my face have been aching like when I did the RAI treatment. I didn't think anything of it at first, but when I woke today (ok technically yesterday) it was really sore so I started massaging.

That brought relief, so I guess I'm back to sucking on those toothpick thingies. Whatever works I guess!

Water is still tough, but it's starting to taste better.

I did manage to catch up with the dishes, so a made a pot of chicken and rice. It's pretty good. But now I'm annoyed. The dishes are out of whack again! Grrrrr! lol

OK, I'm going to bed now.

Night!

The thing about this disease that is frustrating is the mind going. Today has been hard. I had to go out to take care of some business. Took two hours when it should have only taken one.

Concentrating on driving was hard. Writing was worse. I had to stop at the bank. I told the teller what I needed and then promptly got confused when she repeated my order to me. Not good. Fortunately, I have a sloppy signature because it was horrid.

I then had to stop at the pharmacy and wait on a new prescript. The store was conductiing a survey to find out how you like their services and what services you would like to see them add. It was tough reading the survey. I had my contacts in, but my goodness!

Everything was jumping around. I had a hard time answering the questions and it was multiple choice!!!

There were a couple of fill-in-the-blanks and I was trying really hard, but I couldn't write clearly. I hope the young man could read it when he looked at it later. Hmm.. I just thought of something. He was wearing a pharmacy jacket, like he's in school for it. If that's so, he'll be fine reading my paper! hee hee

Then I stopped at the grocery store so I wouldn't have to tomorrow. I can't even BEGIN to describe that event.

I came home and took a nap, got up and ate dinner, and now I want to cry. I thought I would post and I'm getting frustrated because I'm having to go back and correct every other word. If I didn't you wouldn't be able to read this.

So, I guess that's it for today. Hope I didn't run you off with my vent.

Happy Independence Day!

It's been a week and the sore jaw thing is still going on. Not to worry. I have an appointment with my family doc on Monday.

Have been on 100 mcgs for two weeks now. Don't know what's going on. I feel less tired than usual, but the jaw hurts and the mind is still weird. Not sure if this is due to the new dose or what but as I said, I have an appointment on Monday. I'm going to ask this one about Armour.


I have managed to straighten up three and a half rooms. Only two and a half more to go!

I did a bit of sewing this week AND I played my piano some also. Yippee!!!

All in all, I'd say this has been a good week.

Enjoy the sunshine!

I had an appointment with my GP yesterday. I told him that I was having SEVERE abdominal cramping and it didn't start until I began 100 mcg Lev....

I told him I wasn't taking anymore.

He backed me up to 88 mcg and added Cytomel. Started this morning. We shall see how it goes.

or Westhroid or Naturoid? Dessicated thyroid. Have you visited the site: realthyroidhelp.com?

Part of the site has a section for thyroidless people.

The folks on the above board call Synthroid, Syncrap.

Hope you are coming along and will be OK. jam

PS: When an endo attempted to put me on "S" I tried it and the 4th day I was laid out flat with major fatigue. I need t4 and t3 dessicated thyroid hormone..

[This Message was Edited on 07/14/2009]

My endo is now sympathetic. My primary care has made great strides since it is he that prescribed the return to 88 mcg with the addition of Cytomel.

I'm going to bide my time until my endo appointment in August and hit him with that again. I hope I succeed this time.

I don't think I will keep my appointment with the surgeon in September. He listens, but he doesn't hear. This is the second time my GP has had to repeal the surgeon's orders. He's not going to get a third chance.