The THYROID Thread

[Christine]

Christine - maybe you can give your insight. Why are there so many differences in things etc. I guess I am relating this to a "standard" standard of care. Like I was reading on the thy ca website one girl said they didnt even tell her she had to do the diet before rai etc. They just said "if you want to" etc.

Do they have certain standards etc? and why do they vary so widely? Like for my tracer dose it was
double flush, no sleeping with dh, I cant remember the feet away thing, food prep was o.k., no going by children or pregnant women etc., had to take mom before or after the scan, I cant remember.etc

Obviously, others have different standards of care etc. I think it would be so much better if most of the stuff was universally accepted etc.

I think there is no "standard" because there is no hard science. While, in theory, we know WHY we do the LID, there is no proven science really showing that it is as effective as not doing the diet. Many top thyroid doctors believe that using the LID provides for a more effective treatment/scan but it hasn't been proven. So some doctors just don't bother with it. It causes no harm, except mental anguish, on the patient so I'm not sure why all doctors don't embrace it.

As for the RAI guidance, I was once told my a nuclear physician that these precautions some patients are given are WAY over the top and not required, in his opinion. Again, there's no hard science stating that double flushing helps and many doctors think people are just nutso when it comes to radiation. The only consistent information I ever got on RAI that was agreed to by every nuclear physician I came in contact with was to keep children and pregnant women 8 feet away from your neck.

 

[mrsklamc]

My personal thought on why they are so careful with the nuclear med stuff is that there are always people who think the rules don't apply to them, so they are EXTRA cautious as a buffer. No science there at all, just my opinion.

 

[luvmarypoppins]

My dh has worked with radiation before in his job and he talked with an expert at his job who originally did stuff in another country. My dh talked to the rad onc. and she said, I think medical and you think scientific.

But dh insisted I stay overnight in the hosp. Partly because he knew about the effects of the large dose and my medical stuff.

The onc. told me the hosp. was fined by the NRC? for nuclear stuff so they are always careful. Hmm, really? The one guy didnt wear the booties in the room with me, someone next door opened my door and that was not allowed. It had the radiation sign on it. They sent up my food one time on non disposable serving ware (that was suppose to be not allowed either). I had a big blue lidded barrel in my room to put everything in.

Can you only imagine what people do at home? I know there is a girl on you tube who was in the army in Germany and she said the quarantine is VERY strict there etc.

They had offered to stop by the house and pick up my garbage. I dont know why they said that? did they do that with everyone? Dh told them what he was doing etc. and they were fine with it. They said around here it can make the detector go off at the landfill etc?

I also read that in places like NYC they want to check into radiation rules after RAI because some people take public transportation etc. That sounds like fun, being next to a nice 200 rai person on a bus and them not telling you etc. They said they tell patients not to do this, but they do etc.

 

[dischick4778]

The wedding was wonderful. I did miss eating all the fun cocktail hour foods, but the salad and chicken the chef made me were tasty.

Today is day 3 and I'm getting anxious. I want Friday to be here, the scan to be clean, and to eat a nice juicy cheeseburger with fries that night. Is that too much to ask for? I have little patience for the diet this time around in case you didn't notice. I'm hungry and I lost 12 lbs, the whole thing is making me quite irritable.

The shots on day 1 and 2 did not bother me much at all. I felt tired but other than that I was fine. Just took the low rai about an hour ago and they told me not to pick up my son until Friday. They said he should not be near my neck.

Hope you're all doing well!

 

[luvmarypoppins]

Hang in there dischick! You are almost done. There is light at the end of the tunnel!! You can do this!!

I remember after my scan we went to a restraunt. I told the waitress, I am going to be ordering ALOT of food. I think I said, I am REALLY hungry.

I lost 10 lbs. the last time. The onc. nurse told me that is about the average they see. The lst time I lost 20 lbs.

Just curious if that is the only precautions they gave you, just not to pick up your son?

 

[dischick4778]

Thanks for the support! It's so hard, because I want to believe after Friday this will be over for a while. But then the Dr. says today "well that's what we're hoping for". Of course we all know that they could tell me they found more cancer, but why not be a little positive please. It has been an insane year, give me something to look forward to. Sheesh.

But this thread and the people here have been so helpful in dealing with this. So thank you!!

The Dr. today told me not to pick up my son and not to have him anywhere near my neck. I specifically asked if I should not sleep in the same bed as my husband and Dr. said the dose wasn't high enough to have any impact on DH. He did say not to hug any pregnant woman as well. But that was it.

When I had my treatment last year I was quarantined in my mom's house for the week but that was a pretty high dose. This dose is only 4.0 mci.

 

[dischick4778]

Great news, my scan came back clear today! I'm not sure exactly what the number means but last year it was 1.15 and today it was 0. There were no noticeable traces of the cancer. Woo hoo!

The Dr did say I still had antibodies but he was not overly concerned about it and said we would just monitor that with blood tests. Last year that number was over 3000 and today it was 714.

Thanks again for all of the support, I feel relieved and am enjoying time with my family.

 

[Christine]

Congratulations!!! Hope you are enjoying some delicious food.

 

[luvmarypoppins]

dischick - I am so happy to hear your good news.. I am sure you have already enjoyed a cheeseburger and fries!!

Next week I am calling to rearrange my endo visit so dh can be with me. One time the endo said if I did good for the lst 3 years then she felt like I would be good. So I will ask her as well as dh if she will lower the synthroid, she always says no. So I will have the sonogram and blood work in the next couple weeks.

 

[dischick4778]

Happy Fourth of July to all!

I have been celebrating all weekend enjoying good food. I think I put 3 lbs on in two days. Yum!!

Hope you are all enjoying as well.

 

[mrsklamc]

Well-- The Dr.'s assistant said she would try and order the thyrogen at the end of June, so I emailed her yesterday and she just responded that she had submitted my insurance info to the Thyrogen company and would let me know as soon as she hears anything. I am tempted to tell her to skip it and do the cytomel-- just because of my fertility issues I don't want anything holding me up. What do you ladies think you would do?

 

[luvmarypoppins]

Micayla - do you mean you dont want to wait to see if there will be a delay in getting the thyrogen versus just knowing you can go another route, because as soon as the scan is completed you want to TTC?

 

[mrsklamc]

Micayla - do you mean you dont want to wait to see if there will be a delay in getting the thyrogen versus just knowing you can go another route, because as soon as the scan is completed you want to TTC?

Yes- well not as soon as, b/c you have to wait two months to get the tracer dose out of your system. But I'm trying to decide whether to wait on the thyrogen or just go ahead and do 4 weeks cytomel, 2 weeks with nothing.

 

[luvmarypoppins]

Well, you did do that before and wasnt it so draining on you? I have never gone that route, so I cant comment on that part of it. (cytomel). I guess if you could handle the diet and those side effects at the same time, it would be ok. I dont think I could physically or mentally do it both at once with all the symptoms you described you had before.

Can they guarantee you that you will have the thyrogen? Remember I specifically asked the rad. onc. about this and she gave me the whole US thyrogen update.

dischick also had no problem getting the thyrogen but she lives in the ny metro area too. so maybe we have a good supplier as my rad. onc said.

If they are getting it for you from the midwest plant than it should be ok? Also I think you would probably have a better chance of getting it from a hospital who has a cancer center or large teaching hosp. etc. Like the largest hospital by you or within distance, in indiannapolis?

 

[mrsklamc]

I would have done ok on the cytomel/withdrawal process last time if it weren't for the fact that the lab tech screwed up the blood test, and THEN we had to wait to get in for another round of radiation once my blood labs came back.

 

[luvmarypoppins]

Christine should chime in here with her word of wisdom for sure, and Christine if you do, OT, what kind of car did you end up getting? My ds just leased the hyundai sonata. I dont like the leather seats.

Well in my own endo horror story. I just called to change my visit. Its for July 18 and dh will be out of here so I thought no problem. She says, I will give you the next available date, I said thats nice , She .?says...December!! I said, wiat what about August? She says the dr. will not be here. She said do you have diabetes? I said NO!! I have cancer!! So what, diabetes takes a higher precedence there? I said look, I need a sono, blood work etc. and that is to be done 2 weeks before the visit so I am not scheduling that unitl I get a new date. So I said then dont cancel that date yet etc. So she says a secretary in the endocrionology dept. will call me back. Gheesh. I didnt know it would be so hard to get a visit. Maybe its just her since she is the only female endo besides one of the chief ones. And there goes another day in the...General Hospital or aka How I cant get a stinkin appt. visit with the endo.

 

[Christine]

Christine should chime in here with her word of wisdom for sure, and Christine if you do, OT, what kind of car did you end up getting? My ds just leased the hyundai sonata. I dont like the leather seats.

Okay, I'll chime in!! I haven't been reading in a few days, sorry about that.

Micayla, if you think you can tolerate the withdraw/Cytomel scan, I would do it. However, I am not a HUGE fan of Thyrogen as it hasn't been good for me. You seemed to weather through the last time pretty well, except for at the end when it got screwed up. If you think the whole Thyrogen thing is going to mess you up, then skip it. I do wonder, though, how will going hypo affect fertility issues and pregnancy issues? Will that delay you further also? Takes a good while for the body to recover from hypo. I don't overly like the idea of conceiving when the body is not at its peak. So, you see, I'm torn too.

As for the car, I'm paralyzed on that one. I think I'm really leaning toward the Elantra; however, it's so popular I can't even look at one on the lot. Which also means I'll pay sticker--something I.NEVER.DO. The Sonata's okay. What don't you like about the leather seats? Is the leather worse than any other leather you have experienced? I have never had leather seats. My friend has leather in her Camry but does not like it either. I'm a dirty slob so I think leather would work well for me.

I also have a bad cold right now. Can I get some Coping and Compassion!!!!! I haven't had a cold in YEARS. They are awful.

 

[dischick4778]

I guess I didn't know, but is there a thyrogen shortage? It just seemed like the norm at my hospital. There wasn't even a question that I would not get it. The Dr. told me the alternative was 4 weeks off synthroid which as he put it would be torture. Is this a NY thing?

Also, does having thyroid issues contribute to not being able to conceive? I have asked both my endo and obgyn about this and neither one indicated this as a concern for me having future children. They only said we would have to adjust my meds once I was pregnant. We aren't thinking about it right now as my son is only 1, but I was thinking it would be nice in the future. I didn't even realize this was a possible issue.

Luvmarypoppins - where do you live and why is it so challenging to get an appointment?! That is a terrible way to treat you. I hope it works out for you.

 

[mrsklamc]

Dischick- don't worry about fertility. LOTS of women have kids after thyroid cancer; the only risk I have found is a slight-very slight- increased risk of alopecia. And I only found that because I research obsessively. They will want to monitor your levels closely. My fertility issues are a 'bonus' problem apart from my cancer.

I did ask the Dr's assistant if I could start taking Cytomel. She said she would get back to me no later than Tuesday-- I'm sure they are swamped between the holiday and the fact that the doctor's only in three days per week normally.

And YES, Christine, you can have compassion! I HATE colds.

 

[Christine]

Also, does having thyroid issues contribute to not being able to conceive?

The only way they would contribute is if your TSH is out of whack.

I don't know what Micayla's issues are specifically, but if she goes off her meds for 4-6 weeks she's going to get VERY hypo. When she goes back on her meds, it will take a long while for her body to "right" itself. I would think that this could definitely complicate getting pregnant temporarily.