The THYROID Thread

[luvmarypoppins]

How long do you have to be off your synthroid for a follow up scan?

Just wondering if you asked about this already. I thought you said you go back Iin August. My rad onc just gave me a pre printed sheet, so I am assuming she just does this for all the patients. It says...you do not need to go off your meds for a follow up scan. Wow I am glad she uses the thyrogen shots instead!! I dont even know what the other pill is as I dont take that, maybe christine can explain??

 

[luvmarypoppins]

Sounds right.

The Tg blood test is the most sensitive marker for residual or recurring thyroid cancer. Often times, people will have elevated Tg but their scan will appear negative or "clean". What that means is that there is thyroid cancer there but it isn't taking up iodine well if at all. That's another matter to deal with...

Does this sound like a dumb question to ask? Since I have the rare and agressive variant, shouldnt it want to suck it up (agressive) or maybe it means agressive as in spreading to the lymph nodes agressive and columnar cell variant stuff. And just wondering if you can explain about what you said...that is another matter to deal with, Because it also seemed the rad. onc. didnt want to discuss HOW she would deal with it if she found it etc. I thought you could only get 3 total iodine doses and I think I got the max 200 lst time.

Also is this a dumb question, sorry - so if I did the diet, assume scan is normal and then do blood test and go away, would I have to do the diet again if the cancer is back and have to get more rai? Thinking iif it didnt take up the rai good in the scan then would it take it up in a bigger dose? I doubt it right?? TIA.

 

[6789]

Wishing your ds all the best. I am sure the waiting is hard.

Thank you!

 

[Christine]

Does this sound like a dumb question to ask? Since I have the rare and agressive variant, shouldnt it want to suck it up (agressive) or maybe it means agressive as in spreading to the lymph nodes agressive and columnar cell variant stuff.

From what I know, how aggressive a thyroid cancer is has nothing to do with how "avid" a thyroid cancer is. The more normal the thyroid cancer (and some thyroid cancers are close to looking like normal thyroid cells and will be called "well differentiated") is, the better it sucks up RAI. The more bizarre or abnormal the cancer cells, the less likely they are to take up RAI. But each person's cancer is unique and a seemingly harmless, latent papillary cancer can be resistant to RAI.

And just wondering if you can explain about what you said...that is another matter to deal with, Because it also seemed the rad. onc. didnt want to discuss HOW she would deal with it if she found it etc. I thought you could only get 3 total iodine doses and I think I got the max 200 lst time.

In my readings, there is really no lifetime limit. They will keep treating you until it is gone. There is a limit they like to stop at and that is probably around 900 mci. I know people who've had more than this. Most likely, if you had a scan with no uptake but your Tg was elevated, they would give you another large dose of RAI. It could just be that the tracer dose wasn't strong enough to show up on a scan if your cancer is particular avid. It doesn't mean that an RAI treatment won't work on it, just that they need a higher dose to get it to work. If they find that you are RAI resistant, they start looking at surgery (if they can find a measurable mass) or they may do alcohol ablation. This is where they locate the remaining tissue and inject alcohol into it. My coworker has had this done. They also use this technology on Morton's Neuroma's of the foot.

Also is this a dumb question, sorry - so if I did the diet, assume scan is normal and then do blood test and go away, would I have to do the diet again if the cancer is back and have to get more rai?

Yes, because anytime you ingest RAI you need to do the LID.

Thinking iif it didnt take up the rai good in the scan then would it take it up in a bigger dose? I doubt it right??

No, it often does take up the bigger dose--which is a LOT more than a tracer dose.

 

[Christine]

I dont even know what the other pill is as I dont take that, maybe christine can explain??

They are talking about Cytomel which is a short-acting T3 hormone. For those not having a Thyrogen scan, they have to go off their T4 medication. Usually you go off of that 4-6 weeks. After you are off of it for two weeks, they often give Cytomel. You take that for about 2-3 weeks and stop it approximately 2 weeks prior to your scan. It kind of gets you through much of the horrible hypo stuff. It leaves your body pretty quickly so it doesn't interfere too much with the rising TSH.

 

[luvmarypoppins]

Christine - I just wanted to say thank you so much for all your helpful information. You are a blessing!!

 

[BLTtinkerbell]

Justin the Hook,
Thank you! Good luck to you & your wife as well.

 

[BLTtinkerbell]

How timely that I found this thread. I took DS (16) to the doctor and his thyroid is enlarged. The Dr. ran blood tests and prescribed the ultrasound. Blood test cam back and DS TSH was in the 600 range. Then she ran a full blood work up and everything is out of wack. The nurse started reading off some of the results; phosphates, vitamin D and then she got to some items she was not familiar with and stopped. I was told the readings were 'grossly abnormal'. I am waiting for results for DS thyroid ultrasound. I saw them measure something...hoping it was a gland but I do not know how to read what she was doing. I did seem to see something on the screen from a couple of angles. Technician said 'good luck' as we left. I am holding back from reading too much into that...I could drive myself insane if I did. We are scheduled for a visit to the Endo. next week. I am trying not to borrow trouble but I will be glad when I know something more.

Good luck to you and your DS. Keep us posted.

 

[es45]

I just found out earlier this week that I have Grave's Disease. I went for a physical last month and mentioned that I was feeling really tired. I didn't think much of it, figured they would add blood test to see if I was anemic. Thankfully, my doctor also added thyroid blood test. I was told the results showed my TSH was low and free T4 was high, so I should see an endocrinologist to check for hyperthyroidism. I went to the endo. two weeks later and she pointed out that my hands have a slight tremor that I never noticed before. My heart rate was high, so I was given a script. for Propanolol. I was told to take half a pill at bedtime to start and then increase to whole pill. The pills are 10 mg, small & difficult to cut in half, but I did do it. The endo. also ordered more blood work to compare numbers. She said based on the numbers, I should have a thyroid uptake and scan. I did that last week and got a call this Tuesday saying I have Grave's Disease. I was given a script. for Methimazole to take at bedtime along w/the Propanolol. Right now I am taking 1 10 mg pill and she said I will have to start taking 2 after this week. I picked up a book by Mary J. Shomon to learn more about Grave's Disease. I am trying to to find out all I can. As far as I know, no one in my family has this. I am open to comments/suggestions from all. Thanks and be well.

How timely that I found this thread. I took DS (16) to the doctor and his thyroid is enlarged. The Dr. ran blood tests and prescribed the ultrasound. Blood test cam back and DS TSH was in the 600 range. Then she ran a full blood work up and everything is out of wack. The nurse started reading off some of the results; phosphates, vitamin D and then she got to some items she was not familiar with and stopped. I was told the readings were 'grossly abnormal'. I am waiting for results for DS thyroid ultrasound. I saw them measure something...hoping it was a gland but I do not know how to read what she was doing. I did seem to see something on the screen from a couple of angles. Technician said 'good luck' as we left. I am holding back from reading too much into that...I could drive myself insane if I did. We are scheduled for a visit to the Endo. next week. I am trying not to borrow trouble but I will be glad when I know something more.

I can't offer any advice but just wanted to say good luck to you both. This is a very informative board with lots of caring people that are happy to answer your questions--just like they did mine.

 

[es45]

Wishing you all the best too!! I saw your locaton. Some folks we know live in Mooresville and another couple we know just moved to Rocky Mountian? I have to ask her sister if that is the correct town.

We are about an hour from Rocky Mount, 2 from Mooresville, and 11 hours too far from WDW.

 

[luvmarypoppins]

From what I know, how aggressive a thyroid cancer is has nothing to do with how "avid" a thyroid cancer is. The more normal the thyroid cancer (and some thyroid cancers are close to looking like normal thyroid cells and will be called "well differentiated") is, the better it sucks up RAI. The more bizarre or abnormal the cancer cells, the less likely they are to take up RAI. But each person's cancer is unique and a seemingly harmless, latent papillary cancer can be resistant to RAI.


I agree with you about the "uniquness", as my endo told me the only other patient she had with the columnar cell variant, was a guy, and his came back 3 months after the rai, so they said I am doing well. but "WELL" is a relative term to them.

So I guess I will have to take a disney break and if the blood test comes back bad, it was just be more lid and more rai, hmm. maybe I better pig out at disney !! Oh and I need to throw a stomach surgeon visit in the mix too. I dont think all is well from what he did last year also. That was holding up the whole rai. So if something is wrong I will have to work around that too. Never a dull moment!!

And OT: How is your ankle/leg doing christine? Hope you are healing and feeling better.

 

[luvmarypoppins]

Just wondering if you asked about this already. I thought you said you go back Iin August. My rad onc just gave me a pre printed sheet, so I am assuming she just does this for all the patients. It says...you do not need to go off your meds for a follow up scan. Wow I am glad she uses the thyrogen shots instead!! I dont even know what the other pill is as I dont take that, maybe christine can explain??

Micayla, I just read my first sentence to you. I didnt mean how it sounds. Your'e a sweetie and I love reading all your budget friendly tips on the budget board. Here is my lid budget tip for you: If you dont want to be stuck with the fruits of the season during your lid, then freeze some stuff now like strawberries, blueberries etc. Helps with the variety etc. I think I would have gone nuts if I had to do it in the winter with just oranges etc.

 

[ecutaiar]

I've been hypo for going on 22 yrs. (probably longer, but that's when I was diagnosed). I take synthroid on a daily basis. My dose probably changes at least once a year. My husband is usually the first to notice. I'll get cranky or overly tired, overly emotional and he says. I think you might need to have your bloodwork done and adjust your dose. 9 out 10, he's right. Nice to see there are others with issues.

 

[luvmarypoppins]

luvmarypoppins: Just wanted you to know that I have a scan scheduled for May 14th too. Mine is at 2 PM. Here's hoping that we both get good results.

So are you on the lid too? If so, can you share what you are eating. Oh I am not eating this unless its air popped. I dont feellike going out and buying an air popper. I am running out of fruits to try. And I feel like a bunny with the lettuce, so I ate some hot leftovers today.

 

[mrsklamc]

Micayla, I just read my first sentence to you. I didnt mean how it sounds. Your'e a sweetie and I love reading all your budget friendly tips on the budget board. Here is my lid budget tip for you: If you dont want to be stuck with the fruits of the season during your lid, then freeze some stuff now like strawberries, blueberries etc. Helps with the variety etc. I think I would have gone nuts if I had to do it in the winter with just oranges etc.

Oh, you're sweet, I didn't take offense at all. I overplan everything. I'm wondering if I should save up vacation days, I am a bit nervous about how thyrogen has made some people feel and think I might just choose not to use it. I was up to 89 TSH and miserable, but I don't think it has to be that high.

 

[Christine]

Oh, you're sweet, I didn't take offense at all. I overplan everything. I'm wondering if I should save up vacation days, I am a bit nervous about how thyrogen has made some people feel and think I might just choose not to use it. I was up to 89 TSH and miserable, but I don't think it has to be that high.

You are right--it doesn't have to be that high BUT you should aim for as high as you can. The higher the TSH the better the test as it makes the thyroid cells more avid for the tracer dose they will give you.

The first few times I scanned, my TSH was at about 130-140. The third time, they finally gave me some Cytomel. My TSH only made it to 98 that time. On Thyrogen, my TSH gets around 100.

Thyrogen made me fairly queasy for a few days. Also, I am always so freaked out by the whole process (more so than most because I'm just that kind of person) that I make myself a wreck. I generally took off for the week of my Thyrogen scan. Most people do not.

 

[es45]

So are you on the lid too? If so, can you share what you are eating. Oh I am not eating this unless its air popped. I dont feellike going out and buying an air popper. I am running out of fruits to try. And I feel like a bunny with the lettuce, so I ate some hot leftovers today.

Yeah, I'm on the LID too. I've eaten granola and fruit for breakfast, a huge salad with a small amount of grilled meat for lunch, and the same for dinner. Snacks are fruit. I would love a big bowl of mac and cheese right now.

You can cook popcorn in the microwave with a paper bag and olive oil, no need for the air popper. I hear that Newman's Own makes a no-salt microwave version but I didn't see it in my stores. I also read that Trader Joe's has some no-sodium bread that would work for sandwiches with that salt-free peanut butter. I'm not hungry enough to try that yet....

 

[mrsklamc]

I'm so sorry you guys...I can relate to wanting the mac and cheese. I find that giving up dairy is the hardest part of the LID for me...I wanted ice cream, cheese, etc. so bad. Praying for you!

 

[luvmarypoppins]

Yeah, I'm on the LID too. I've eaten granola and fruit for breakfast, a huge salad with a small amount of grilled meat for lunch, and the same for dinner. Snacks are fruit. I would love a big bowl of mac and cheese right now.

You can cook popcorn in the microwave with a paper bag and olive oil, no need for the air popper. I hear that Newman's Own makes a no-salt microwave version but I didn't see it in my stores. I also read that Trader Joe's has some no-sodium bread that would work for sandwiches with that salt-free peanut butter. I'm not hungry enough to try that yet....

My LID is a combo of nih,thy ca and the rad. onc. own rules. Its stressing me out. I cant even have tap water as ours is from an aquifer. I like to mix it up. They thy ca. says 6 ounces of meat but I am only suppose to have 4 etc. I think I might go over. I really dont know as I dont have a scale. At least I use the steamfresh vegetables. I think its hard cooking meals for yourself and then a different one for the family etc. Next week my dh will be away so I am having the ds just get themselves stuff I think since I will be a mess from thyrogen tues. for sure. And since this is NY and chinese food is everywhere I do crazy stuff like basmati rice, grilled beef or chicken with orange marmalade and snap peas. Close as I can get. I had oatmeal today, Yuck!!

I think I might try your popcorn receipe. What would be the measurements? Thanks!

 

[luvmarypoppins]

I'm so sorry you guys...I can relate to wanting the mac and cheese. I find that giving up dairy is the hardest part of the LID for me...I wanted ice cream, cheese, etc. so bad. Praying for you!

Thanks Micayla. I remember saying how you kept thinking about the Taco Bell!! I dont know what my lst meal will be. I am thinking of the diner for an omlet or maybe something italian. I dont know what time my scan is yet. All I know is after that and the blood test on the 14th. I am heading somewhere very good for sure. I might do 2 good meals that day to make up for lost time
Worse, my dh is obsessed with eating in the hospital cafeteria. They do have really good food there and after the 7 operations I had last year I am sure he knows what he likes too, but I told him no way was I eating there etc!!