Blood Test Results

[Kaylee1211]

Hello,

I’m wondering if anyone can help.

A bit of history, I had thyroid cancer in 2013, it came back (or never really went) in 2016 and was in the lymph nodes.

I recently had a scan and two enlarged lymph nodes were noted, one being 7.6mm. The other was hidden behind/under the collar bone so they couldn’t measure accurately.

My blood test results have come back ok, TSH suppressed and thyroglobulin at 0.41

Am I being paranoid in thinking the lymph nodes are something sinister, or should I trust the blood test results?

I’m currently taking Levi thyroxine, alternating between 150 and 125 mcg.

Thanks in advance!

[Kaylee1211]

Hello,

Thank you for your reply 😊

I have had RAI twice, after both surgeries for the cancer.

It was papillary.

I’ve always been a bit of an odd case. It came to light because of a lump on my neck. They only removed it because it had got to the point where it was pushing on my wind pipe and making it difficult to breathe properly. Blood test results were always normal, normal thyroid levels. Then when they took it out the cancer had took over the left lobe.

My TSH is suppressed with the last reading as 0.007

Thank you for the reassurance though, I have a follow up next month but due to COVID it’s over the phone so they can’t do the usual examination, and I don’t want to put any unnecessary pressure on them just because I’m nervous about it haha x

[Poniesrfun in reply to Kaylee1211]

RAI often isn't effective for persistent cancer in the lymph nodes, surgery is usually the primary treatment for lymph nodes. You could wait and have a recheck ultrasound in three months to see if there are changes or push for an FNA biopsy of the accessible node.

Patti in AZ

[Kaylee1211 in reply to Poniesrfun]

Hello,

Thank you.

They said after my last RAI that I probably won’t need/be able to have it again.

They did want to do a biopsy of the one under the collar bone when I had the ultrasound but he said it would be too risky to get there safely. I think I will definitely push for another scan in a couple of months if one isn’t offered.

Thanks for the reply 😊

[Batty1]

Hi Kaylee1211, I had thyroidectomy in 2016 for cancer and currently have recurrence in lymph nodes and oddly nothing blood wise indicates my cancer is coming back but my scans say it has for me personally I chose the watch method with my Endo but suspect I will have to deal with it sooner or later. I do find it baffling that these Endos say I must have low TSH to keep the thyroid cancer away only to have cancer again after 4 years with a very low TSH... I don’t get worked up over these things anymore its just annoying and life sucking.

[Kaylee1211 in reply to Batty1]

Hello,

Thanks for the reply!

This is what I’m confused about too haha. My bloods have always been good, TSH suppressed, thyroglobulin low etc, but it still came back in 2016 after almost 3 years, and possibly back again with no indication from the blood tests.

I’ve not looked into it, but surely there must be side effects to keeping the TSH suppressed so low long term?!

[Poniesrfun in reply to Kaylee1211]

The side effects of prolonged suppression are not from the "low TSH" itself but mainly from being prescribed very high or excessive doses of levothyroxine (T4) to achieve a low TSH. TSH suppression can be achieved by lowering T4 doses and adding T3 (Cytomel, liothyronine) without the side effects of T4 over medication. Unfortunately, this has not been widely recognized, and seems to be doubly difficult for you in the UK, but there are signs that this is changing. The ATA (US), BTA (UK) and ETA (Europe) recently issued a joint consensus statement regarding combination therapy. liebertpub.com/doi/10.1089/...

There's a link to view a pdf version of the whole document with a very informative table of all the statement considerations. Baby steps but at least not going backwards.

Side note - thyroid cancer showing up in the lymph nodes is more likely to be "persistent" cancer that has been there as a micro carcinoma too small to be visible or to produce much in the way of Tg rather than "recurrence". When suspicious lymph nodes are accessible, a few places in the US are doing alcohol ablation - less invasive than surgery.

Patti in AZ

[Kaylee1211]

Ah that’s what I’m on. Have been on for over 7 years now. What is classed as a high or excessive dose?

I was very naive when I got diagnosed and at the time couldn’t really find, or didn’t want to find out the implications of treatment later down the line.

My oncologist at one point did suggest the possibility of T3 but I only found this out by looking through my medical records, it’s never been mentioned to me and he has since retired!

Ah ok, so it could be that now they are just a bit bigger? I know it is slow growing, just didn’t know how slow!

Thank you, I feel like I understand a bit better now! 😊

[Batty1 in reply to Kaylee1211]

If you were over medicated you would definitely know it ... I was on Cymbalta a while ago and this drug interacted with my thyroid meds even though Ive taken hours apart and my hyper symptoms were insane I shook like I had Parkinson’s disease (mom has it) I couldn’t hold a glass of water it was severe after stopping cymbalta my issues went away.

Most thyroid cancer is slow growing.