The THYROID Thread

[Christine]

OK so the endo nurse calls to tell me my thyroglobulin is at 27 and it needs to be at 2. What?

Is this for the RAI!? She is calling me back once she talks to the doctor. I thought I would see the radiologist next week and then they would schedule the RAI for a few weeks after that, and then follow up with endo on December... I am a bit confused

Anyone?

Thyroglobulin is something thyroid cells produce. Specifically thyroid cancer but normal cells produce it too which is why monitoring you for thyroid cancer is very difficult if you don't have all your thyroid removed.

So basically the number 27 is telling you that even after your surgery, you still have thyroid in your neck and it is working and producing stuff.

After thyroid surgery and eventual RAI treatment you actually want your thyroglobulin levels to be "undetectable." That means there are no thyroid cells (good or bad) left in your body. They will measure your thyroglobulin levels every 6 months for the rest of your life. If that number starts to increase, that will mean that you are having a recurrence.

Do not be alarmed that your number is 27 at this point. That's pretty normal after surgery and before RAI. The RAI will take care of that 27.

 

[kimmie]

Thanks Christine! That makes me feel better. I thought that the number 27 would prevent or delay getting the RAI.

I can't thank you all enough for your help!

 

[Christine]

Thanks Christine! That makes me feel better. I thought that the number 27 would prevent or delay getting the RAI.

I can't thank you all enough for your help!

The only thing that might delay RAI is your TSH level. I think they like it to be a minimum of 40 before treatment (that shows your truly hypothyroid). My radiation specialist likes to see it really high--ideally between 80 and 100. The higher the TSH the more "hungry" the remaining thyroid cells are for iodine.

 

[kimmie]

The only thing that might delay RAI is your TSH level. I think they like it to be a minimum of 40 before treatment (that shows your truly hypothyroid). My radiation specialist likes to see it really high--ideally between 80 and 100. The higher the TSH the more "hungry" the remaining thyroid cells are for iodine.

Thanks! Not sure what my level is....find out on Thursday...

 

[kimmie]

Ok. I met with the radiology onc. Very nice man who explained a lot about the process. He told me not to worry about the diet. He will be giving me a pretty high dose of RAI and I will be staying in the hospital overnight/maybe two nights (I hope not, but whatever). He took blood to see where my TSH is and they will call with results in the morning. I will need bloodwork once a week until my level is atleast 50 or so. I will have a scan and then RAI.I think I have more thyroid left than maybe other people because I am tired, but not too bad. I am kinda crabby though!

I hope I am making sense.

PS I think I will try to follow the lid diet somewhat. He said if I want to I can but don't knock yourself I and drive yourself crazy over it.

All I know is I want all the bad stuff out!

 

[luvmarypoppins]

kimmie - did you ask what he meant by a "high" dosage. The highest at once is 200 and Micayla and I both had that. It threw me for a loop.

Getting on my soapbox here and saying you should definetly FOLLOW the lid to a tee. I did and then some. My hosp. even provides a dietician that you can call anytime during the diet and consults with you before the diet too. I didnt know that my ins. wasnt paying for it but it was the best $112 bucks I ever spent. I think that is why I am doing so well especially since mine is so rare and aggressive.

I stayed in the hospital overnight. They will let you come home after you are gieger countered at the safe level. Dont let the room scare you, its covered in plastic wrap EVERYWHERE, event he toilet seat. I had a big blue bucket with lid in my room to dispose of everythiing. I watched a lot of tv and drank tons of water. boring,. The nurses came in real quick mostly taking the blood pressure with disposable stethescopes and booties and rubber gloves I think and disposable thermometers. All meals were on cardboard and it was nice not to have to cook my own lid food for a day. I also had a draining stomach wound at the time so I think they came in to change that bandage twice too.

They told me to just go put on my clothes and walk out but dont get on the elevator with any kids.

 

[luvmarypoppins]

And in the what next dept from me. Definetly TMI to come...after the thyroidectomy which put me into early menopause, yeah, now comes lots of cramping and slight stuff, so I called a gyn. Explained stuff to the scheduler.

She wants records. I tell them go look it up online and they can read all about it, hmm, guess they can start with the coma and my near death experience. That is why I picked someone at the univ. and not locally here. This lady will be able to ask any of my other surgeons or the endo anything she wants.

So now I am going to that dr. but not until Nov. 14 unless they have a cancellation. It will be interesting to see what is happening. And I dont want to hear the C word again for sure. Just hope its something normal etc. because we are getting on a plane and going to Disney Nov. 28th and I dont want to cancel it.

 

[kimmie]

kimmie - did you ask what he meant by a "high" dosage. The highest at once is 200 and Micayla and I both had that. It threw me for a loop.

Getting on my soapbox here and saying you should definetly FOLLOW the lid to a tee. I did and then some. My hosp. even provides a dietician that you can call anytime during the diet and consults with you before the diet too. I didnt know that my ins. wasnt paying for it but it was the best $112 bucks I ever spent. I think that is why I am doing so well especially since mine is so rare and aggressive.

I stayed in the hospital overnight. They will let you come home after you are gieger countered at the safe level. Dont let the room scare you, its covered in plastic wrap EVERYWHERE, event he toilet seat. I had a big blue bucket with lid in my room to dispose of everythiing. I watched a lot of tv and drank tons of water. boring,. The nurses came in real quick mostly taking the blood pressure with disposable stethescopes and booties and rubber gloves I think and disposable thermometers. All meals were on cardboard and it was nice not to have to cook my own lid food for a day. I also had a draining stomach wound at the time so I think they came in to change that bandage twice too.

They told me to just go put on my clothes and walk out but dont get on the elevator with any kids.

No he did not tell me how high the dose would be. I am going for a scan on Tuesday to see how much tissue is left and some more TSH level check. Then he will let me know that afternoon what exactly will happen and how long I have to wait. (He wants my TSH level between 50 and 80 before he will do the RAI).
You bet I will be following the lid diet as soon as he tells me its a go. I am already cutting things out right now. I am very aware of what I am eating so the RAI will be as successful as possible.

Thanks guys! I can't tell you all how much it means to me to have you all here!

 

[kimmie]

And in the what next dept from me. Definetly TMI to come...after the thyroidectomy which put me into early menopause, yeah, now comes lots of cramping and slight stuff, so I called a gyn. Explained stuff to the scheduler.

She wants records. I tell them go look it up online and they can read all about it, hmm, guess they can start with the coma and my near death experience. That is why I picked someone at the univ. and not locally here. This lady will be able to ask any of my other surgeons or the endo anything she wants.


So now I am going to that dr. but not until Nov. 14 unless they have a cancellation. It will be interesting to see what is happening. And I dont want to hear the C word again for sure. Just hope its something normal etc. because we are getting on a plane and going to Disney Nov. 28th and I dont want to cancel it.

Fingers crossed that you will be at Disney!

 

[luvmarypoppins]

kimmie - just wondering how your scan went. Hope your levels are rising too.

Monday I am going for the reclast infusion. I sure hope this helps my bones. I am hoping the endo is there then too so I could run my gyn symptoms by her and see what she thinks etc.

The symptoms have mostly gone away but I am still keeping the appt.I also lost or I should misplaced my next blood work and sono script that is for Jan. so I will get another one etc.

 

[kimmie]

Hi luvmarypoppins!

My scan was ok. As he suspected, I have thyroid leftso I am having RAI next Tuesday. My levels this week were at 50. Last week it was 25. So I am sure next week it will be higher yet. I am really starting to feel it too!

I have been doing the lid diet this week. It isn't all that difficult for me since I eat many of these foods anyway. I just have to watch out for the dairy, bread and chips! lol
I have put on some weight which is driving me crazy. I can't stand it right now, but I know it will come off as soon as I can get on some meds!

I have my birthday coming up next Saturday and will not be doing any celebrating for sure. (I did have the option to wait one more week, but I want to feel better as soon as possible. I wouldn't be much fun anyway!)

My Mom sent me a 500 piece puzzle!

I am trying to think of things (disposable) that I can get for myself beforehand.

Anyone have ideas?
disposable cups, plates, utensils

I did ask about toothbrush and things at the hospital.

What did you bring with you? Did you bring shower stuff? Hairdryer?

I am sure I will have more questions before Tuesday!

Thanks so much!

 

[luvmarypoppins]

I actually brought nothing with me to the hospital but the clothes on my back.

I didnt get into the room and get the pill until after 8 pm and all I did was just watch tv the whole time etc.

My dh came the next morning to say hi. He was so stupid and opened the door. I was screaming get out etc. He says, its ok etc. I guess he doesnt care as he has worked with the radiation from his job etc. It bothered me.

I actually didnt take a shower due to the fact that I had the draining wound so if I got that wet them they would have to come in more etc. which was not good and I couldnt change it myself. They didnt tell me to take a shower I think because they knew the wound issues.

I have read on thyca. that some girl took like 3 showers.

Dont bring anything with you that much or it will have to be geiiger counted before you leave and if not acceptable will have to be disposed of etc.

I am sure they told you to bring the sour lemon drops. I didnt use them that much. they made me sick themselves. I wish I had Jolly Ranchers instead, at least it would have been more of a flavor variety.

At home I was told absolutely no disposable stuff or it would have to be held for months etc. I was told to have 1 plate, cup and bowl and utensils etc. and to wash them away from my family after each meal. I did it in the bathroom sink.

No prepping or touching food for a week and if you touch a tv controller, computer keyboard etc. that is shared then wear disposable rubber gloves and no walking around with bare feet etc.

I must admit based on what everything else that everyone else did, my rad. onc. and hosp. is a bit overboard on all the precautions, but I would rather be that way. My dh figures all the radiation out mathematically etc. so he would always comment to me etc.

Sorry you have to go through this on your birthday. Wishing you all the best. Did they tell you the dose yet. I think 150 is standard and bearable. Anything more and you might not be feeling so great etc.

 

[kimmie]

I just got back from Walmart! I bought Lemonheads and Jolly Ranchers!

I did talk to the physicist this morning. I had lots of questions. He was so nice. He told me to have disposable cups and plates and remove them from the house myself. I cannot prepare food for others, must sit 6 feet from loved ones, obviously not share anything of mine with anyone else. He explained about the half life every 60 days and who would be in danger from long term exposure. My hair dryer is junk anyway, so if I have to leave it good riddens! lol

I was thinking of packing like a bag lady. I just have to have clean hair!

I got a mask from the paint dept. and those throw away painting gloves just in case.

He did mention a few times about saliva more than sweat. I guess it is more concentrated. He thought I had a pretty good handle on what I need to do, so I should not worry.

I am looking at it as a adventure in isolation!! Can I stand myself.....

We shall see!

Forgot to add I am getting 100! Just enough to keep me for 24 hours.

 

[Christine]

I just got back from Walmart! I bought Lemonheads and Jolly Ranchers!

kimmie,

You should read this. It is from Dr. Kenneth Ain, one of the leading thyroid cancer specialists in the U.S. They have long advised not to use candies after treatment:

RAI and salivary stimulants (after)
The ONLY reasonably-performed study documented the worsening of salivary dysfunction consequent to using lemon candies to stimulate salivary flow during the first 24 hours of radioactive iodine therapy. On the other hand, AFTER 24 hours there is such a severe decrease of the level of radioactive iodine in the circulating blood, that the need for further treatments (of any sort) for the salivary glands is essentially moot. For that reason, I do not advocate ANY use of salivary stimulants at ANY time during or after radioactive iodine therapy. This differs from the recommendations of the study's authors who state that they might suggest use of lemon candy after 24 hours from the I-131 treatment.

The abstract for the study is: Nakada, K., T. Ishibashi, et al. (2005). "Does lemon candy decrease salivary gland damage after radioiodine therapy for thyroid cancer?" J Nucl Med 46(2): 261-6. Salivary gland dysfunction is one of the common side effects of high-dose radioiodine therapy for thyroid cancer. The purpose of this study was to determine whether an early start of sucking lemon candy decreases salivary gland injury after radioiodine therapy. METHODS: The incidence of the side effects of radioiodine therapy on the salivary glands was prospectively and longitudinally investigated in 2 groups of patients with postsurgical differentiated thyroid cancer with varying regimens for sucking lemon candy. From August 1999 to October 2000, 116 consecutive patients were asked to suck 1 or 2 lemon candies every 2-3 h in the daytime of the first 5 d after radioiodine therapy (group A). Lemon candy sucking was started within 1 h after radioiodine ingestion. From November 2000 to June 2002, 139 consecutive patients (group B) were asked to suck lemon candies in a manner similar to that of group A. In the group B, lemon candies were withheld until 24 h after the ingestion of radioiodine. Patients with salivary gland disorders, diabetes, collagen tissue diseases, or a previous history of radioiodine therapy or external irradiation to the neck were excluded.

Thus, 105 patients in group A and 125 patients in group B were available for analysis. There were no statistical differences in the mean age (55.2 y vs. 58.5 y), average levels of serum free thyroxine (l-3,5,3',5'-tetraiodothyronine) (0.40 ng/dL vs. 0.47 ng/dL), and the mean dose of (131) I administered (3.96 GBq vs. 3.87 GBq) between the 2 groups. The onset of salivary side effects was monitored during hospital admission and regular follow-up on the basis of interviews with patients, a visual analog scale, and salivary gland scintigraphy using (99m)Tc-pertechnetate. When a patient showed a persistent (>4 mo) dry mouth associated with a nonfunctioning pattern on salivary gland scintigraphy, a diagnosis of xerostomia was established. RESULTS: The incidences of sialoadenitis, hypogeusia or taste loss, and dry mouth with or without repeated sialadenitis in group A versus group B were 63.8% versus 36.8% (P < 0.001), 39.0% versus 25.6% (P < 0.01), and 23.8% versus 11.2% (P < 0.005), respectively. Permanent xerostomia occurred in 15 patients in group A (14.3%) and 7 patients in group B (5.6%) (P < 0.05). In both groups, bilateral involvement of the parotid gland was the most frequently seen and was followed by bilateral involvement of the submandibular gland. CONCLUSION: An early start of sucking lemon candy may induce a significant increase in salivary gland damage. Lemon candy should not be given until 24 h after radioiodine therapy.
—ThyroidCancerHelp, November, 2007RAI and sour candy (don’t use)
The facts are this: the only reasonably-performed clinical trial of salivary stimulants demonstrated that sour candies severely worsen salivary damage from radioactive iodine. Additionally, enhanced liquid consumption during radioactive iodine therapy will demonstrably diminish the benefits of radioactive iodine and put one at risk for dilutional hyponatremia, based on classic radiobiology and physiology. There is no doubt that these concepts are not understood or affirmed by some physicians; however, they're just mostly wrong or ignorant. Medical/biological reality is not subject to alteration by polling or voting. Much of the information on the ThyCa website was originally provided by me, but much has been altered and that of some other contributors is not correct.
—ThyroidCancerHelp, November, 2007

 

[luvmarypoppins]

Thanks for that insight Christine.

I really didnt eat the lemon candy that much either, It was making me nauseous but my salivary glands are really damaged anyway probably due to the high dose.

Just curious: Is there an article about the tear duct damage, since mine of course are damaged and I have to have the surgery etc.

And after my upcoming infusions, dr. visits etc, it will be interesting to see what they say about my issues and relationship to the thy ca.

 

[kimmie]

kimmie,

You should read this. It is from Dr. Kenneth Ain, one of the leading thyroid cancer specialists in the U.S. They have long advised not to use candies after treatment:

OK Christine...Your just no fun....

Seriously I will leave the candy at home

 

[luvmarypoppins]

Well think of it as a post Halloween treat

 

[kimmie]

Well think of it as a post Halloween treat

 

[Christine]

Thanks for that insight Christine.

I really didnt eat the lemon candy that much either, It was making me nauseous but my salivary glands are really damaged anyway probably due to the high dose.

Just curious: Is there an article about the tear duct damage, since mine of course are damaged and I have to have the surgery etc.

And after my upcoming infusions, dr. visits etc, it will be interesting to see what they say about my issues and relationship to the thy ca.

I went nuts on the lemon drops my first RAI treatment and did get some salivary gland damage. Fortunately it was temporary. I also had a blood sugar crisis in the hospital which they suspect was due to be severely hypothyroid and eating too many candies. Second treatement I did nothing but eat some grapes every hour or so which sort of "gently" got my salivary gland to excrete. Probably didn't even need that seeing that study.

Yes, there is an article on the tear duct gland damage. I'll have go back tonight and find it (shhhh, I'm at work now) but it was brief and basically described your issue.

 

[mrsklamc]

My first treatment I was determined to follow instructions to the letter, went nuts on the lemon drops and got salivary damage. I didn't do it the second time and had no damage, even though my dose was much higher (and I do have dry mouth.)