The THYROID Thread

[mrsklamc]

Oh that's just great!! It feels wonderful to get back on your meds.

YES!! And people just do NOT get it. It feels SO good not to feel...dull. I've showered every single day but this morning I was savoring the feeling of the towel rubbing across my skin. I was so 'out of it' that I wasn't really experiencing it I guess. I was ok for 'social' stuff but not for anything analytical- friends determined to get me out of the house took me out during the day on Monday and the best way I could explain it was that it felt like watching the events unfold in a movie rather than actually being there.

 

[mrsklamc]

GP's office called to say they were faxing it to the endo. I asked what the number was. She said 5.7

 

[Christine]

GP's office called to say they were faxing it to the endo. I asked what the number was. She said 5.7

Your Tg was 5.7?

 

[mrsklamc]

Your Tg was 5.7?

Yes. I was SO SURE it was going to be clear.

 

[Christine]

Yes. I was SO SURE it was going to be clear.

Well, don't go to far down in the dumps yet...

Do you remember what your Tg was when you discovered you had cancer? Was it fairly high?

The reason I ask is that the RAI does take some time to do its job. This is one of the reasons that some doctors do not do RAI or scans at a 6-month interval. When you have your big blast of RAI treatment, it can take a number of months for the Tg (and remaining thyroid tissue to decrease). You will often see a gradual decrease in this number in those that have a fairly high Tg to begin with. Often times, the true measure of how an RAI treatment worked is not until about a year after the ablation.

I'm not sure how your doctor will handle. They may opt to wait another 6 months and do this all over again and get a Tg level. If there is still a measurable Tg, I would think that they would want to give you another dose.

Or, maybe your endo feels confident that the amount of time that has passed is sufficient to get a good Tg reading right now and he/she may want to prep you for another treatment. If they do give you another treatment, that does will be sufficiently high enough that they probably will see where the residual thyroid cells are.

It will be interesting to see how your endo views this.

 

[mrsklamc]

No, when I was first diagnosed I was just clueless...

The only number I know was the last blood test she said it was less than one, they prefer undetectable, but of course I was medicated then.

 

[luvmarypoppins]

Micayla - I am sending you a big ol . I was thinking about the "time" issue that christine commented upon. Didnt you have your original dose in nov? That would only be 9 mos. My rad. onc. said the scan couldnt take place until at least 1 year post rai.

I hope you get the explanations and answers you are looking for. We are with you in your journey. Hang in there!!

 

[Christine]

No, when I was first diagnosed I was just clueless...

The only number I know was the last blood test she said it was less than one, they prefer undetectable, but of course I was medicated then.

A medicated, unstimulated Tg (measured while on Synthroid) isn't overly reliable. Yes it is somewhat reliable because you certainly want to make sure that you have no elevation while you are being treated with Synthroid but the gold standard is a stimulated Tg test to give the "true" results.

Hopefully your endo can tell you what your Tg was before and after your surgery and at the time of your first treatment. That will give them some sort of clue on how to proceed.

Also, I know this is a big letdown for you. They always lead you to believe that everything will be "cleaned up" with one shot of RAI. I ended up having to have 3 treatments. It was a real emotional blow to me.

 

[es45]

No, when I was first diagnosed I was just clueless...

The only number I know was the last blood test she said it was less than one, they prefer undetectable, but of course I was medicated then.

Thinking of you

 

[mrsklamc]

Also, I know this is a big letdown for you. They always lead you to believe that everything will be "cleaned up" with one shot of RAI. I ended up having to have 3 treatments. It was a real emotional blow to me.

Yes, that's it exactly...The only other thing I am seeing online is something to the effect that some of us will develop Tg antibodies that essentially render the Tg useless...Does that sound right?

I have one other 'confession' but I don't think it really affected the fact that there was detectable Tg. You know how I said the RAI people told me to start back on my meds? I took ONE cytomel when I was convinced that the endo's office wasn't going to call me back and I was just desperate to go back on my meds. I think that if anything that would make the Tg read falsely low, though, and not falsely high?

ETA: I looked online before the second blood draw and it said that cytomel stayed in your system for 2.5 days and the 2nd blood draw was a full 3 days later, so I figured it would be OK. I know it was a dumb thing not to be honest with the endo's office to begin with but I just felt like any more time off the drugs and I was going to have a nervous breakdown.

 

[dischick4778]

Good luck mrsklamc. My thoughts are with you. It has only been 8 weeks since this whole thing started for me so it is fresh in my mind and I can't even imagine having to start the process over. Sending you

Tomorrow is my follow up with my surgeon. Not sure what we are going over, but I dread even going into his office. Last time I was there I got nothing but bad news. Hoping for a positive visit.

 

[mrsklamc]

I am now 8 months post RAI- I wonder if it might be still working? I don't mind so much doing it again- I mean, I'm not looking forward to it or anything- it's just that I feel the baby window might be closing on me and that's what stresses me out more than anything.

Christine, did your friend not to do more ablation because it is painful? Is that the part she didn't want to go through again? Also...If it's RAI resistant in lymph nodes, would that show up on an ultrasound?

 

[Christine]

I am now 8 months post RAI- I wonder if it might be still working? I don't mind so much doing it again- I mean, I'm not looking forward to it or anything- it's just that I feel the baby window might be closing on me and that's what stresses me out more than anything.

Christine, did your friend not to do more ablation because it is painful? Is that the part she didn't want to go through again? Also...If it's RAI resistant in lymph nodes, would that show up on an ultrasound?

I don't think it was painful but something about it has made her hoarse all the time and she has voice and some swallowing issues. This is for the alcohol ablation.

Yes, her spots are showing up on ultrasound. They may actually be showing up on her annual scans; however, RAI treatments are not getting rid of it. She's had so much that she won't be taking any more large treatments.

 

[mrsklamc]

Dr's assistant called- Dr. is out on Fridays, and didn't get a chance to look at my results, but they are high. Dr. will probably call herself on Monday. She didn't have the antibody results in front of her but she didn't think they were a factor in the Tg being high.

 

[Christine]

Dr's assistant called- Dr. is out on Fridays, and didn't get a chance to look at my results, but they are high. Dr. will probably call herself on Monday. She didn't have the antibody results in front of her but she didn't think they were a factor in the Tg being high.

*Generally* antibodies will reduce a Tg rate. I say "generally" because there is always an exception. Tg antibodies develope when your body sees Tg, doesn't like it, so the antibodies come in and try to KILL the Tg. I had antibodies during my initial diagnosis phase but they went away when my Tg was reduced. If anything, if Tg antibodies are present they will give a false negative. That is why a thyroid cancer patient must have the antibody test done ALWAYS with the TG test. You don't want to be sitting around with a negative Tg when the antibodies could be what is destroying them. A negative/undetectable Tg with antibodies present is always looked at suspiciously.

 

[mrsklamc]

Oh. From my amateur sleuthing on the web, I thought I had gotten the idea that antibodies could falsely indicate the presence of Tg when it wasn't really there. This is why I should wait for my dr. before I go googling things I guess.

Christine, is it your experience that they only do the alcohol ablation after multiple RAIs have failed?

 

[Christine]

Oh. From my amateur sleuthing on the web, I thought I had gotten the idea that antibodies could falsely indicate the presence of Tg when it wasn't really there. This is why I should wait for my dr. before I go googling things I guess.

Antibodies cannot exist if there is no thyroglobulin. Antibodies are an autoimmune response to a substance that your body views as an invader. If you have Tg present and you have a tendency to develop antibodies, you will develop Tg antibodies. When you get rid of all the Tg in your body, you will no longer have antibodies because there is nothing left for the body to react to. Tg antibodies will give a false reading on your thyroglobulin levels. It really only becomes important in the situation where you have an undetectable Tg yet you have antibodies. In that case, you cannot rely on the the undetectable Tg result. If you have a Tg of, say, 3.5 and you have antibodies, you cannot rely on the fact that your Tg is only 3.5. It could be higher but the antibodies are reducing it to some extent. They cannot prove that antibodies reduce Tg or how much they reduce Tg but they are pretty sure that antibodies do reduce Tg levels.

Did you have antibodies?

Christine, is it your experience that they only do the alcohol ablation after multiple RAIs have failed

When alcohol ablation first came out, it was only used on resistant to RAI cases. As with everything, once they use it enough times on the "stubborn" cases, they start using it on everyone who could receive benefit from it. This is how Thyrogen got its start. They used to actually never give an ablative dose of RAI with Thyrogen unless you were so old and frail that that's the only way it could be done. Now they are doing it more and more in the general population. I think this may be the case with alcohol ablation.

It could be, in the long run, if they can knock out thyroid cancer with alcohol ablation, it will be better for you than having multiple RAI treatments. I have not researched alcohol ablation so I would want to know what the ramifications are of that treatment.

 

[mrsklamc]

Thanks Christine! I believe I HAD antibodies but the assistant said they weren't particularly elevated.

The last time I saw my endo she mentioned that sometimes once the thyroid cells were in the lymph nodes they could be resistant and that one thing they did with that was alcohol ablation so I'm hoping that could be the next step and possibly then be less of a delay than RAI, depending on how long they like to wait to see how it works. Plus, no diet, I'm assuming. I will just wait and see what she has to say.

 

[Christine]

Thanks Christine! I believe I HAD antibodies but the assistant said they weren't particularly elevated.

The last time I saw my endo she mentioned that sometimes once the thyroid cells were in the lymph nodes they could be resistant and that one thing they did with that was alcohol ablation so I'm hoping that could be the next step and possibly then be less of a delay than RAI, depending on how long they like to wait to see how it works. Plus, no diet, I'm assuming. I will just wait and see what she has to say.

Yes, there won't be any diet or waiting or being off meds for alcohol ablation. That's good.

It's a shame your doctor has to make you wait till next week. I know doctors just do this but it really stinks.

 

[mrsklamc]

Well, she's only in 3 days a week, and she's very highly in demand because she IS a really good doctor. My first endo I would hear back from sooner, but not as great a dr. So I really don't mind waiting to Monday. My thought is, they weren't really going to do anything between now and Monday anyway.