The THYROID Thread

[mrsklamc]

Micayla,

Congrats on the clean scan.

Hmmmm...if you've had your thyroglobulin test back already, I can't imagine what they are waiting for.

My old endo always gave the nuclear doctor 'permission' to give me the results. That was nice. I could always go back on meds, eat what I wanted once I heard from them.

I just wonder what the hold up is for you.

Yeah I find that so bizarre. I wonder if she didn't have the results right on the top of the chart and forgot she had them already? So weird.

 

[ElizK]

ElizK--

Have you had a thyroid scan yet to measure your thyroid and to see if you have nodules? Or an ultrasound?

I have an ultrasound each year to watch a tiny nodule. This last scan (I think it was in Dec) showed that it was actually smaller than the year before. Doctor told me when it was first discovered that it was too small to biopsy, and we'd watch it.

I had follow-up lab work done today, so the dr's office will be calling me probably on Tues. I'll talk to the nurse about the problems I'm having then.

I have a high-deductible insurance for the first time this year... sure makes me think twice about making a dr's appt when the cost is coming out of my pocket.

 

[Christine]

I have an ultrasound each year to watch a tiny nodule. This last scan (I think it was in Dec) showed that it was actually smaller than the year before. Doctor told me when it was first discovered that it was too small to biopsy, and we'd watch it.

I had follow-up lab work done today, so the dr's office will be calling me probably on Tues. I'll talk to the nurse about the problems I'm having then.

I have a high-deductible insurance for the first time this year... sure makes me think twice about making a dr's appt when the cost is coming out of my pocket.

Oh, good, then someone is watching it. If you are having those sensations of fullness you should probably let them know and they can zip you in for an ultrasound. Either the nodule has decided to grow or, I suppose, it could be something like thyroiditis which could mean the thyroid is inflamed. That might happen in a case of hashimotos or something. Otherwise, it could be totally unrelated. When my GERD was undiagnosed and untreated, I felt like I had a horrible lump in my throat. It really scared me because I had recently been treated for thyroid cancer and I was convinced I was having a recurrence. I went to an ENT who scoped me from my nose down into my vocal chords and didn't see a thing. It was a terrible feeling. Then they kept telling me it was sinus drainage (which was part of it) and/or anxiety. Now if I miss my Prilosec for any length of time, that sensation comes back. Oh, and I got it REALLY bad 2 months ago when I went off my thyroid meds for 6 days. Not sure what happened there, but I actually felt like my throat was closing up. That probably *was* anxiety because I was certainly feeling anxious.

 

[mrsklamc]

Micayla,

Congrats on the clean scan.

Hmmmm...if you've had your thyroglobulin test back already, I can't imagine what they are waiting for.

My old endo always gave the nuclear doctor 'permission' to give me the results. That was nice. I could always go back on meds, eat what I wanted once I heard from them.

I just wonder what the hold up is for you.

I think I have a clue now. My GP dr. sends me a copy of my labs and I just received them in the mail- no thyroglobulin number on them anywhere. So that must be what they are waiting for. The only thing that doesn't make sense is that when I went in for the tracer dose, the paperwork they showed me clearly had a <1 for thyroglobulin. I wonder if that was just a mistake or a filler since they didn't really need that info for the scan.

Something I found online last night is that many labs aren't equipped to do thyrogobulin in house because it's not a standard test so it has to be 'sent out,' so that must be the holdup.

 

[Christine]

I think I have a clue now. My GP dr. sends me a copy of my labs and I just received them in the mail- no thyroglobulin number on them anywhere. So that must be what they are waiting for. The only thing that doesn't make sense is that when I went in for the tracer dose, the paperwork they showed me clearly had a <1 for thyroglobulin. I wonder if that was just a mistake or a filler since they didn't really need that info for the scan.

Something I found online last night is that many labs aren't equipped to do thyrogobulin in house because it's not a standard test so it has to be 'sent out,' so that must be the holdup.

Yes, there are only a few labs that do thyroglobulin so when your bloodwork goes out, the thyroglobulin tubes go somewhere else. I had all my bloodwork done in Virginia but the thyroglobulin was always sent out to the Mayo clinic. On my last set of labs back in July, I was very confused because my thyroglobulin came back in 2 days. So, I'm thinking that my lab is now doing it in house.

So, who ordered your Tg test? Your GP or the hospital. When my hospital did it (when I was having scans) the TSH and Tg were reported electronically so when the tech pulled up my record at the scan, the results were there even though the paperwork had not reached my doctor. And doctors don't have the computer access to the hospital's in house blood records. So I'm wondering if you had your tests done at the hospital? Maybe that is why they had your TG results?

 

[luvmarypoppins]

ElizK - hope the labs might shed some light on your problem. Wishing you all the best.

Micayla - so happy that you are off the diet, now go eats lots of dairy!! hmm, cheese please? Ice cream

Looks like the cipro might be working for me. I guess the real test will be after its done and I have to wait for the surgeon to get back from vacation, if things start to head south again, then I know I will almost certainly be having the surgery.

 

[mrsklamc]

Yes, there are only a few labs that do thyroglobulin so when your bloodwork goes out, the thyroglobulin tubes go somewhere else. I had all my bloodwork done in Virginia but the thyroglobulin was always sent out to the Mayo clinic. On my last set of labs back in July, I was very confused because my thyroglobulin came back in 2 days. So, I'm thinking that my lab is now doing it in house.

So, who ordered your Tg test? Your GP or the hospital. When my hospital did it (when I was having scans) the TSH and Tg were reported electronically so when the tech pulled up my record at the scan, the results were there even though the paperwork had not reached my doctor. And doctors don't have the computer access to the hospital's in house blood records. So I'm wondering if you had your tests done at the hospital? Maybe that is why they had your TG results?

Well...my endo's office is attached to a hospital system and that's where I would prefer to have my labs done...except if I DO that, the silly insurance bills me for being ADMITTED to the hospital. ($150 instead of free.) So I do it at my GP's lab, which makes it difficult because then the GP's nurse has to remember to send them to the endo... and the nuclear med place is yet another facility, so maybe the GP's office sent them directly to the nuclear med place...I dunno. I am going to call my GP's nurse in the morning, hopefully the thyroglobulin came in separately and she just didn't get it called in right away.

 

[luvmarypoppins]

Micayla - hope you get the results soon. I know the ins. sometimes gets crazy. I have learned how the "system" of mine works depending on the situation etc.

Just wondering if you lost any weight on the lid this time? I am sure by now I have gained all the 10 lbs. back that I lost.

 

[mrsklamc]

No, I didn't lose any, at all. I think it's because my LID diet is fairly carb-heavy, and I also have PCOS, which is related to insulin resistance, which means I (hopefully) will do better on a protein heavy diet. I was hoping to start South Beach tomorrow but I think starting a diet when I'm not taking any meds is setting myself up to fail, so hopefully I can get this straightened out first thing tomorrow.

 

[mrsklamc]

So I called my regular doctor's office first thing this morning, only to wait until 2:30 for the lab to finally call and fess up that they accidentally ordered for thyrogobulin antibodies rather than thyrogobulin. I went right away to have blood drawn again and then called my endo's office to see if I could go back on my synthroid. They are going to call back and let me know.

I just have no idea what happens if the thyrogobulin doesn't come back the way they want it to; if it's high that means I have cancer still but they don't know where right? So what then?

 

[Christine]

I just have no idea what happens if the thyrogobulin doesn't come back the way they want it to; if it's high that means I have cancer still but they don't know where right? So what then?

An elevated thyroglobulin with a clean scan means that you possibly have RAI resistant thyroid cancer. It means that it is probably still in the neck but not taking up RAI so it can't be seen. Often times, it is functioning less than regular thyroid tissue so the tracer dose might be too low to see it and they will often see it with the ablative dose.

More than likely this is not the case but it is one scenario.

 

[mrsklamc]

An elevated thyroglobulin with a clean scan means that you possibly have RAI resistant thyroid cancer. It means that it is probably still in the neck but not taking up RAI so it can't be seen. Often times, it is functioning less than regular thyroid tissue so the tracer dose might be too low to see it and they will often see it with the ablative dose.

More than likely this is not the case but it is one scenario.

Ok, good to know. My Dr. had mentioned that if it was in lymph nodes they might inject them directly with alcohol to try and kill the node but I wasn't sure how they would do that if they couldn't see them on the RAI scan anyway.

 

[luvmarypoppins]

Micayla - I am so sorrry that you have to go through all of this. I hope this new blood test is ok.

I also heard my np mention about the alcohol too.

Wishing you all the best.

 

[es45]

Ok, good to know. My Dr. had mentioned that if it was in lymph nodes they might inject them directly with alcohol to try and kill the node but I wasn't sure how they would do that if they couldn't see them on the RAI scan anyway.

Good luck with your test

 

[mrsklamc]

I am so frustrated. They told me they would call back today about whether I can go back on my meds and still nothing. I am tempted to just do it, this is ridiculous.

 

[Christine]

My coworker has had the alcohol ablation. They wanted her to do it some more but she won't. Wherever they've done it, it has affected her voice/throat area.

 

[mrsklamc]

Well here's hoping they don't recommend that! BUT I can start taking synthroid so I'm glad for that.

 

[Christine]

Well here's hoping they don't recommend that! BUT I can start taking synthroid so I'm glad for that.

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

I don't know much about alcohol ablation--just that they use it for resistant cases (or so I thought). My coworker has thyroid cancer that they cannot get rid of through RAI. It keeps popping up in her neck--small enough so they cannot do surgery but it is there. Her thyroglobulin remains elevated and she's had lots of RAI on it which no longer seems to take care of it. She is treated by one of the biggest thyroid cancer gurus in the country. She's one of the first I've known to do the alcohol ablation (a few years ago). She felt like she had a lot of side effects after it. She's had more thyroid cancer come up and they were talking to her about doing another round of the alcohol. She was resistant to it. But then she found out she had breast cancer so she has been dealing with that right now. Poor thing, she has been through a lot.

 

[es45]

I don't know much about alcohol ablation--just that they use it for resistant cases (or so I thought). My coworker has thyroid cancer that they cannot get rid of through RAI. It keeps popping up in her neck--small enough so they cannot do surgery but it is there. Her thyroglobulin remains elevated and she's had lots of RAI on it which no longer seems to take care of it. She is treated by one of the biggest thyroid cancer gurus in the country. She's one of the first I've known to do the alcohol ablation (a few years ago). She felt like she had a lot of side effects after it. She's had more thyroid cancer come up and they were talking to her about doing another round of the alcohol. She was resistant to it. But then she found out she had breast cancer so she has been dealing with that right now. Poor thing, she has been through a lot.

Christine, do you know how elevated is her thyroglobulin? Just curious what is normal for someone in this situation.

 

[Christine]

Christine, do you know how elevated is her thyroglobulin? Just curious what is normal for someone in this situation.

You know, she has told me before. It's not awfully high. Under 10 I would say. God I hate having a bad memory. It may even be as low as between 2 and 4.