The THYROID Thread

[mrsklamc]

OK so I can't remember what I told you guys on here but my endo's office just called and my TSH was 75 on Monday, but she's waiting for the results of a second Tg test just in case the cytomel messed with the TG level before she orders the radiation. Sigh.

 

[Christine]

OK so I can't remember what I told you guys on here but my endo's office just called and my TSH was 75 on Monday, but she's waiting for the results of a second Tg test just in case the cytomel messed with the TG level before she orders the radiation. Sigh.

Great news on the TSH. The higher the better. But, yeah, that stinks on the waiting for the Tg.

 

[mrsklamc]

Great news on the TSH. The higher the better. But, yeah, that stinks on the waiting for the Tg.

The irony is, I did it to myself. She wasn't going to order the Tg and I asked if there was any chance the one cytomel I took mimicked Tg in the test. She doubted it but thought it made sense to check.

 

[luvmarypoppins]

Micayla - just sending you some happy thoughtsHang in there!! You are a tough cookie and we know you can do this.

I scheduled my blood test for next week. My endo has me on a 3 month schedule for the tests and a 6 month to see her.

 

[mrsklamc]

I am so depressed. Tg came back at 5.2. The RAI place doesn't have an opening until Wed at 8:30. So basically diet and no pills for 2 weeks! I feel like I'm going to lose it!

 

[Christine]

Oh, you poor thing. The only "bright" side to this is that your TSH will be nice and high for the treatment--all the better. Hopefully this will take care of it. That's a shame they can't do it sooner.

 

[mrsklamc]

Oh, you poor thing. The only "bright" side to this is that your TSH will be nice and high for the treatment--all the better. Hopefully this will take care of it. That's a shame they can't do it sooner.

My regular dr's office nurse happened to call and I was just *sobbing* because I don't feel like I can do this for two more weeks. She is going to call around and see if she can find somewhere that can get me in, but surely if that were a possibility the endo's office would have tried it?

 

[luvmarypoppins]

My thoughts and prayers are with you. Praying for peace in the midst of this storm. Hang in there honey.

I wish they could get it sooner for you too, maybe because of the holiday??

 

[mrsklamc]

it takes them a day to order it from the pharmacy i guess, and the nuclear med dr. isn't there tomorrow. I'm sure the holiday doesn't help. Although when i had my original dose in dec i had to stay of meds for a week and they are telling me I don't this time. I didn't talk to them but according to DH they don't really think whatever it is will show up on a scan anyway

 

[Christine]

it takes them a day to order it from the pharmacy i guess, and the nuclear med dr. isn't there tomorrow. I'm sure the holiday doesn't help. Although when i had my original dose in dec i had to stay of meds for a week and they are telling me I don't this time. I didn't talk to them but according to DH they don't really think whatever it is will show up on a scan anyway

You should be able to resume your meds 24-48 hours after you take the RAI. There is a very good chance that something will show up on the post-ablative scan. You had uptake initially with our RAI treatment before so there is no reason to think that what is leftover from that won't. The problem with whatever is producing that Tg is that it is probably VERY small and/or it has become damaged from your previous treatments and is not uptaking iodine well. The hope is that it will uptake enough from the massive dose to kill it off.

 

[mrsklamc]

You should be able to resume your meds 24-48 hours after you take the RAI. There is a very good chance that something will show up on the post-ablative scan. You had uptake initially with our RAI treatment before so there is no reason to think that what is leftover from that won't. The problem with whatever is producing that Tg is that it is probably VERY small and/or it has become damaged from your previous treatments and is not uptaking iodine well. The hope is that it will uptake enough from the massive dose to kill it off.

I remember how shocked you were that they did a 'tracer' before my initial ablation and I will probably always wonder if I would still be dealing with this had they not. I am hopeful that the fact that the tracer being almost a month before the ablation dose will help this time.

 

[Christine]

Here are some posts from one of the online thyroid cancer support groups. These are just "blurbs" regarding how to best deal with positive Tg yet clean scans. Not sure that it really helps you with anything but thought you might find it interesting.

Message # 3103
> > "...
> > It is sometimes appropriate to administer radioactive iodine treatment
> > when the thyroglobulin level is elevated even though the diagnostic
> > I-131 whole body scan is negative (clear). This should only be done
> > when there is NO evidence of macroscopic tumor masses using
> > non-contrast CT scans, ultrasounds, or MRI scans.
> > It is also important to make sure that the scan is not
> > falsely-negative, due to contamination from stable (non-radioactive)
> > iodine from radiographic contrast dye, dietary iodine,
> > iodine-containing medication (particularly amiodarone), or topical
> > iodine (betadine, tincture of iodine, etc.)"
> >
> > Message # 6078
> > "...
> > Definition of Situation: Thyroid cancer patient (papillary or
> > follicular,including their many variants) after a total thyroidectomy
> > and surgical removal of evident local nodal metastases, who have had
> > radioiodine ablation therapy and have had an effectively performed
> > I-131 whole body scan (WBS) performed 5 months or more after the I-131
> > ablation. This WBS appears negative, yet the stimulated
> > thyroglobulin is above 0.4 ng/mL (may be a different cutoff for less
> > sensitive thyroglobulin assays). An important caveat is that these
> > criteria apply to WBSs performed using a hypothyroid preparation (TSH
> > > 30) with a low iodine diet and the WBS uses a dose of at least 4 mCi
> > I-131.
> >
> > Pathway A: The patient is prepared by hypothyroid preparation (TSH
> > >30) and low iodine diet, then is given at least 150 mCi I-131
> > therapy. A WBS is performed after the treatment (post-therapy WBS: 2
> > days after treatment for my patients, others typically wait up to a
> > week, longer times are not advised). If the post-therapy WBS shows
> > iodine-avid tumor sites or a follow-up stimulated thyroglobulin
> > (hypothyroid preparation) is significantly diminished, then this
> > approach has shown itself to have been therapeutic and it may be
> > repeated in 6 months to a year."
> >

 

[Christine]

More:
------------------------------
That JUST happened to me,too! Clean scan, TG was 8.9. What a HUGE
disappointment. I did the PET scan, and it showed two 5mm lymph nodes. I'm SO
glad they did that so I know what the source is of the TG is. The endo said
that those nodes apparently don't take up iodine,and referred me to the surgeon.
The surgeon doesn't see a need to do anything about it at this time, but
re-evaluate again in a year with ultrasound.
Was your TG undetectable before going hypo? Mine was.

-----------------------------------

 

[mrsklamc]

Yes, thank you Chistine, that does help. It's the endo's assistant, not the nuclear med person, who is telling DH I would be able to go back on meds right away so maybe the nuclear med guy will have different instructions.

I keep meaning to go dig into a thyroid board and it's just hard to drag myself away from the DIS for whatever reason.

He says 'may be repeated in 6 months'- he means if necessary, right? He doesn't mean to do a 3rd ablation regardless?

 

[mrsklamc]

More:
------------------------------
That JUST happened to me,too! Clean scan, TG was 8.9. What a HUGE
disappointment. I did the PET scan, and it showed two 5mm lymph nodes. I'm SO
glad they did that so I know what the source is of the TG is. The endo said
that those nodes apparently don't take up iodine,and referred me to the surgeon.
The surgeon doesn't see a need to do anything about it at this time, but
re-evaluate again in a year with ultrasound.
Was your TG undetectable before going hypo? Mine was.

-----------------------------------

Wow this one really surprises me, for 2 reasons. 1) everyone seemed to act like it could be a GOOD thing that they didn't see a detectable source (at least to my face they acted that way ) mentioned that it could even be a matter of a few cells and the RAI might just take care of it. 2) I am really surprised they didn't want to operate on this person, given the ability of cancer to spread on a cellular level, and the fact that they could 'see' something, even if it's small.

 

[Christine]

He says 'may be repeated in 6 months'- he means if necessary, right? He doesn't mean to do a 3rd ablation regardless?

Correct!

And it probably would do you some good to join the Thyca online group or the other one moderated by Dr. Ain. As I was just scrolling through them, I realized what a wealth of information is on there. Not that you're really looking for help but I bet if you joined up and posted your current situation, you'd get a good number of people in your same situation coming on to tell their experiences. These stories are helpful as you navigate your own treatment and if something sounds "off" or "lacking" in what is being done to you, you can question your doctors.

 

[Christine]

Wow this one really surprises me, for 2 reasons. 1) everyone seemed to act like it could be a GOOD thing that they didn't see a detectable source (at least to my face they acted that way ) mentioned that it could even be a matter of a few cells and the RAI might just take care of it. 2) I am really surprised they didn't want to operate on this person, given the ability of cancer to spread on a cellular level, and the fact that they could 'see' something, even if it's small.

That's why reading those sites is great--you would be amazed at the what people go through. I think in further reading that person's e-mail chain, there was evidence that the surgeon didn't quite know how to get at it. They don't like to operate if they don't think they can get at something palpable.

What surprised me the most about these posts (and I haven't read over there in awhile) is that in the thyroid cancer world they are taking more advantage of PET scans, MRIs etc in these instances. They were not doing that 10 years ago.

 

[mrsklamc]

Yes I will probably do that- though I have great news, the endo's office called back and got me in a different facility for tomorrow- but she re-iterated that they don't intend to do a follow up scan which still seems bizarre. but I'm kind of at a point where I just don't care for right now, i just want it to be over. I know that's not the right attitude but I feel like I just can't DO this any more.

 

[mrsklamc]

Christine is right as usual. Med. assistant called back to say they will do a scan a week after.

 

[Christine]

Christine is right as usual. Med. assistant called back to say they will do a scan a week after.

Glad to here that! So you are on the road to this being over with!