The THYROID Thread

[Christine]

Wow. It was definitely stressed to me to use lemon drops...I was SO frustrated when the saliva gland problems started because I had forced myself to have SO many...I am just glad that yours finally resolved itself, my dentist told me it would but I read online that it was probably permanent, and I SO don't want to deal with chipmunk cheeks on and off for my whole life!

I thought mine would never go away either and, at times, was quite painful. This was back in the dark ages and no one could tell me anything. I ended up having an MRI done because they thought I might have had a blockage.

I just remember I would eat and the thing would swell up and hurt. I would massage it and sometimes it would release through saliva duct in my mouth or sometimes not. I was just so glad when it finally stopped.

 

[collins316]

Hi everyone!
I was diagnosed with Graves about 2 years ago (hyperthyroid)
The endo I was referred to suggested I get the radioactive iodine treatment asap, not trying any meds first. I didnt feel bad at the time, actually, I felt great. After the RAI treatment, I felt the worst I had ever felt in my life, as I slowly went hypo. I didnt get on meds until I was fully hypo. I am now on the generic synthroid forever (levothyroxine) 125mcgs. I wish I could get a higher dose, but supposedly my bloodwork comes back ok on that dose. I still feel tired a lot, and have gained about 20 pounds since having my thyroid nuked. No matter what I eat or how I work out, I stay I cant seem to lose the weight. That is the frustrating part for me. So glad to find this trhread with people in the same boat.
Bernice

 

[dischick4778]

mrsklamc - Thank you for the wonderful ideas from Trader Joe's. This has all happened so quickly that I do not really have all the resources and have been following such a boring diet. But they tell me as of Tuesday I can go back to eating normal. Now, whether or not I will have an appetite is a different story. And the frozen lemonade sounds like a wonderful addition to the lemon drops which they did suggest.

luvmarypoppins - My radiation pill dosage is going to be 150. I am happy that I will have a tv and access to a computer, I know that will help with the isolation. Good luck with your procedure if needed. I'm sure you really don't want to deal with another thing but whatever it takes to make sure you're healthy!

Christine - the grapes sound like a great idea as well. Is it the sourness that helps? Did you try to find grapes that were more sour than sweet? I obviously can't imagine what this is going to feel like until it happens to me, but I want to be prepared. Would other sour candies help? You said it would hurt when you ate, was that all foods or just particular types of food? I don't think my Dr has stressed this part at all so I wasn't even thinking about it. Dr barely even mentioned it, like it was nothing.

 

[luvmarypoppins]

dischick - I really didnt even find the lemon drops helpful after a day. I just found them too sour for my stomach and I already take rx for my hiatal hernia.

I chose to stay overnight in the hosp. for the dose. My dh worked with radiation so he knew what to expect etc. They really kept stressing to drink ALOT of water. You want the rad. out of your system. So you will be like a camel the lst day or two. I even got the awesome experience to keep being checked with a geiger counter while there

My instructions were to also only eat from one plate, cup and utensils and wash them after each meal in a seperate sink. Nothing disposable. They also told me my clothes would have to be held at home for 6 months and then thrown away, so I just went in the hosp. and put on a gown. My dh even surprised the rad. onc. with everything he knew and precuations so she was happy about how we would handle stuff etc.


Right after the dose I remember feeling quesy all week, not so much nauseous but quesy and the rad. does a number on your digestive and intestinal system. Think you may be spending alot of time in the bathroom. I am sure they went over the stuff like double flush the toilets, shower rinse for 10 minutes etc. I found that I could only eat a little bit of stuff and I would feel strange.

I know everyones experience is different, so maybe the others can share theirs too. Wishing you all the best.

 

[mrsklamc]

Wow I didn't have any of those precautions and they didn't tell me to drink lots of water either....I really wish they had esp. since no kids yet but I've also read there is no evidence that parental radiation pre conception has damaged kiddos..but it still bugs me a little.

Dischick4778- Is your dose on Tuesday? I had to wait a week after my dose to go back to eating normally. Which is about the same time all my tastebuds burned off from the radiation...yeah they acted like it was no big deal with me either.....ARGH.

Actually the saliva stuff Christine and I are talking about-- My treatment dose was back in December and I just started noticing problems in April, it happens on and off...no one mentioned anything to me about it. It's like since they can usually treat this type of cancer, they think the side effects are no big deal. If they had to live with the side effects, they wouldn't act that way, I think...

 

[Christine]

dischick - I really didnt even find the lemon drops helpful after a day. I just found them too sour for my stomach and I already take rx for my hiatal hernia.

I chose to stay overnight in the hosp. for the dose. My dh worked with radiation so he knew what to expect etc. They really kept stressing to drink ALOT of water. You want the rad. out of your system. So you will be like a camel the lst day or two. I even got the awesome experience to keep being checked with a geiger counter while there

My instructions were to also only eat from one plate, cup and utensils and wash them after each meal in a seperate sink. Nothing disposable. They also told me my clothes would have to be held at home for 6 months and then thrown away, so I just went in the hosp. and put on a gown. My dh even surprised the rad. onc. with everything he knew and precuations so she was happy about how we would handle stuff etc.


Right after the dose I remember feeling quesy all week, not so much nauseous but quesy and the rad. does a number on your digestive and intestinal system. Think you may be spending alot of time in the bathroom. I am sure they went over the stuff like double flush the toilets, shower rinse for 10 minutes etc. I found that I could only eat a little bit of stuff and I would feel strange.

I know everyones experience is different, so maybe the others can share theirs too. Wishing you all the best.

luvmarypoppins--

Back when I was having my treatments, lemon drops and water were the way to go. I started going to the Thyca conferences and seeing some of the top thyroid doctors speak and they have not come to a consensus to stop the major flushing and lemon drops. They actually do NOT want the RAI to leave too quickly because that's when it is doing it's work. The last bit of advice I've read is to just eat/drink normally. It has been over a year since I followed the Thyca listserv so maybe things have changed. The one group I did find invaluable was Dr. Kenneth Ain's listserv. He is a "top" thyroid oncologist who works out of the University of Louisville and the patients he takes at this point are only those who have been resistant to treatment. He has studied thyroid cancer and the treatment probably more than anyone so I really do kind of pay attention to what he says and it makes sense. He always speaks at all the thyroid conferences and he ended up meeting his wife at one of them. She had thyroid cancer and wrote some book (I forget her name but she was at the conference as a speaker also). So I pretty much follow his advice when it comes to stuff like that. If you're interested, you could join his Yahoo listserv group and just read, like I do.

I spent two treatments in the hospital and had the old gieger counter thing done. My hospital wasn't nearly as strict with my clothes and stuff. I had two young kids at the time so, yeah, it can make me nervous to think about it.

 

[dischick4778]

I would have been thrilled to stay in the hospital, but they are not offering that as an option. They did say for the first 24 hours to eat/drink normal but not over do it because that is when the radiation is strongest and they want it to work. Then they said after the first 24 hours drink like A LOT in order to flush it out. As far as eating, they told me to stay on LID until 24 hours after the pill then back to a normal diet plus the extra fluids.

I bought cheap clothes and sheets that I am going to wash and dispose of after this is over. They told me my clothes should be washed separately, but that once washed they would be fine again. However, I'm just going to throw them out.

mrsklamc - I can't believe you are still having problems so long after. They have not mentioned that to me at all. So disappointing. Oh well, I guess it's a small price to pay for having my health. But it does not sound like fun.

Christine - Thank you for the suggestion on the listserv, I will have to look into that!

Going for the pill tomorrow morning. Will try to be in touch throughout the week. My family is giving me an old laptop they no longer use, so I'm not sure how great it's going to work.

Thinking positive thoughts...

 

[Christine]

I would have been thrilled to stay in the hospital, but they are not offering that as an option. They did say for the first 24 hours to eat/drink normal but not over do it because that is when the radiation is strongest and they want it to work. Then they said after the first 24 hours drink like A LOT in order to flush it out. As far as eating, they told me to stay on LID until 24 hours after the pill then back to a normal diet plus the extra fluids.

I went back and read Dr. Ain's site today and this is exactly the recommendation about the fluids--wait 24 hours. I then read some more and the posts just freaked me out so I stopped. Going back to putting my head in the sand...

 

[mrsklamc]

I went back and read Dr. Ain's site today and this is exactly the recommendation about the fluids--wait 24 hours. I then read some more and the posts just freaked me out so I stopped. Going back to putting my head in the sand...

Well please don't feel badly..I don't think you messed up anyone's treatment in the day or two that was posted, and we certainly appreciate all your knowledge.

Bought lots of fresh fruits and veggies today, and baked some totally bland but LID-friendly bread. Got home only to realize I forgot the salt-free ketchup and the oats for the salt-free ketchup. Oh well, I still have tomorrow...

Christine, did you crash pretty immediately after stopping cytomel the last time you did a withdrawal scan? My last dose is Tuesday night and I am not planning to go to work Wednesday.

 

[Christine]

Well please don't feel badly..I don't think you messed up anyone's treatment in the day or two that was posted, and we certainly appreciate all your knowledge.

Christine, did you crash pretty immediately after stopping cytomel the last time you did a withdrawal scan? My last dose is Tuesday night and I am not planning to go to work Wednesday.

I had to be off Cytomel for 8 days prior to scan. I don't remember crashing right away. I think it was around day 3 or 4.

No, I wasn't too worried about messing up someone's treatment--I think I was agreeing that you should not push water or lemon drops at least right away. It was good to read that Dr. Ain confirms that. What freaked me out was some of the posts. There was one person on there who was going through battling a recurrence. They were originally diagnosed in 1985 and had a recurrence in...get this...2008! Just when I thought I was safe.

There were just a lot of posts about lifelong vigilence and it depressed the heck out of me.

 

[dischick4778]

What freaked me out was some of the posts. There was one person on there who was going through battling a recurrence. They were originally diagnosed in 1985 and had a recurrence in...get this...2008! Just when I thought I was safe.

There were just a lot of posts about lifelong vigilence and it depressed the heck out of me.

We can't think that way. I was told there is a possibility of recurrence, but I won't walk around thinking that any day now it could be back. We have to enjoy our lives and deal with situations as they arise. That is why it is so important to keep following up and getting scanned as needed even if it is a hassle.

 

[Christine]

We can't think that way. I was told there is a possibility of recurrence, but I won't walk around thinking that any day now it could be back. We have to enjoy our lives and deal with situations as they arise. That is why it is so important to keep following up and getting scanned as needed even if it is a hassle.

Well, I normally don't think that way--I'm usually pretty positive. I hadn't read those "support" listservs in awhile. Now, I know. I think I'll stay away although they do keep me up-to-date with new developments.

As for the scanning hassle, that's what is part of what freaks me out. I am no longer able to use Thyrogen due to a reaction and last month I tried to go off my meds and I had HORRIBLE anxiety (this didn't happen to me in my 30s). So, I feel like I can't really do what I'm supposed to do.

 

[MiceFan]

Thank you for sharing your stories, I'm still working my way through the thread, it may take me a while.
I had a thyroidectomy in November 2009 due to 4 benign (thank you Jesus!) tumors and I also had severe Hashimoto's Thyroiditis. I'm doing great on 125 mcgs of Synthroid, slightly hyper, but so much better than last summer!
My 8 y/o DD is having similar symptoms to mine (lots of anxiety and I think, panic attacks, constant hunger, of course, leading to weight gain) so I requested that her pediatrician test her thyroid. We got the results last week that her TSH was 71.5, free T4 was 0.70. My levels never got so crazy, it was just the antibodies that were odd and finally helped my docs figure my symptoms out.
Her pediatrician doesn't seem to get the urgency of the situation, she's trying to get us in to see an endo, but right now, they are telling us not until November and the pedi isn't going to do anything in the mean time.
I made my DD an appointment with my GP (he's a family doc) for later this week. I'm sure he'll want to do more blood work (EEEK! I cannot begin to explain how badly she freaks out about needles) but hopefully he will get her started on Synthroid and give her some time to adjust before school starts next month. I wish my DD didn't have to go through thyroid issues, but I am thankful that I had to deal with it first, hopefully I can advocate for her a little better.

 

[mrsklamc]

As for the scanning hassle, that's what is part of what freaks me out. I am no longer able to use Thyrogen due to a reaction and last month I tried to go off my meds and I had HORRIBLE anxiety (this didn't happen to me in my 30s). So, I feel like I can't really do what I'm supposed to do.

I wouldn't describe it as horrible anxiety but I do feel like I'm about to step off a cliff. I think it makes it worse, too, that it doesn't seem like people around me understand. And of course, you can't understand if you haven't been through it but it's like they think you should be able to snap out of it or something.

 

[luvmarypoppins]

MiceFan - I hope your dd gets an appt. with the ped. endo so her problems can be addressed. I know my ped got my ds into the ped endo much faster instead of me calling myself for an appt. So dr. to dr. might help too.

Christine - so I guess with the flush/no flush thing and what I asked and you commented before. We just have to do what our drs. tell us to do etc.
So I had to do the thyrogen/flush route etc. I do remember that I went into the hosp. at 8 pm so I dont think what I drank was more than too much normal. I really dont drink water that much at all, so maybe what seemed like alot was just a little over normal. I know what you mean about the coming b ack stuff. I guess I never think about it until I go for another blood test, then I think about it. Also I had this "nice" lady at church tell me, oh yeah my sil had what you had and hers just came back after 20 years etc. Yeah thanks, just what I needed to hear. Oh she had to tell me very detail,. Its on her tongue and aorta. I said, oh what are they doing. She said -Nothingg!! And she goes to the premier cancer center in NYC!!So just live life each day. After almost dying, I have a whole different outlook now for sure. And thanks for always helping us with the info. You are the best.

Micayla - Hope the diet goes well for you. Just curious as to what you are using the ketchup for?? Like a mock barbeque sauce??

Micayla -

 

[6789]

Thank you for sharing your stories, I'm still working my way through the thread, it may take me a while.
I had a thyroidectomy in November 2009 due to 4 benign (thank you Jesus!) tumors and I also had severe Hashimoto's Thyroiditis. I'm doing great on 125 mcgs of Synthroid, slightly hyper, but so much better than last summer!
My 8 y/o DD is having similar symptoms to mine (lots of anxiety and I think, panic attacks, constant hunger, of course, leading to weight gain) so I requested that her pediatrician test her thyroid. We got the results last week that her TSH was 71.5, free T4 was 0.70. My levels never got so crazy, it was just the antibodies that were odd and finally helped my docs figure my symptoms out.
Her pediatrician doesn't seem to get the urgency of the situation, she's trying to get us in to see an endo, but right now, they are telling us not until November and the pedi isn't going to do anything in the mean time.
I made my DD an appointment with my GP (he's a family doc) for later this week. I'm sure he'll want to do more blood work (EEEK! I cannot begin to explain how badly she freaks out about needles) but hopefully he will get her started on Synthroid and give her some time to adjust before school starts next month. I wish my DD didn't have to go through thyroid issues, but I am thankful that I had to deal with it first, hopefully I can advocate for her a little better.

I agree. The doctors really need to get her started on synthroid. Just a low dose to start to get her TSH lower and her numbers back in sync. Remind the doctors how difficult it is for someone to concentrate when the thyroid is not working and with school starting it is necesssary to address this now. Good luck!

 

[MiceFan]

Thanks luvmarypoppins and 6789! I got a copy of the lab report this afternoon and saw that her lymphocytes were also above range. I sent a message to my thyroid surgeon about it. He's my favorite physician and one of my favorite people as well. He referred to me as his favorite patient, so we'll see if that's just what he calls everyone or if I hear back soon.
Thanks for the encouragement!

 

[mrsklamc]

Micayla - Hope the diet goes well for you. Just curious as to what you are using the ketchup for?? Like a mock barbeque sauce??

Nope, just as ketchup. DH makes me home made french fries.

 

[mrsklamc]

I took my last cytomel today. The good thing about going hypo last time, I think, was that I didn't know what I was getting into.

 

[dischick4778]

Had my radiation pill yesterday afternoon. Feeling ok so far. Mostly tired and having a hard time eating dry foods like bread and cookies. But happy to be eating and drinking normal foods again. I have some discomfort but not a lot. Had a few lemon drops so far today. Thanks again for all the support!!