Raised Ca125 as thyroiditis marker?

[Regenallotment]

Had a gynae appointment today, (good news I hope) it’s unlikely the raised out of range blood test marker they use for Ovarian Cancer (Ca125) is indicating Ovarian Cancer in my case.

She took a uterine biopsy and has referred me for another ultrasound.

She thought it more likely my thyroiditis and nodules/adenomas are causing the raised Ca125.

Anyone come across this before?

ENT on Thursday this week to discuss MRI with contrast.

[Jazzw]

It is good news but—and this is less good news and I wondered about whether I should share it cos I don’t want to worry you unnecessarily (especially as it’s unlikely) but then thought you’d probably rather know than not know? A raised CA125 can also indicate primary peritoneal cancer.

It’s an epithelial cancer that behaves very much like ovarian cancer but doesn’t actually involve the ovaries (well, not until much later). I know this because my mother had it and her diagnosis was missed because they saw no ovarian involvement and assumed all was well. Eventually she was diagnosed by an abdominal CT scan.

It’s very rare. Really rare. But possible.

And, of course, CA125 can be raised for all sorts of more “benign” reasons, including endometriosis and other inflammatory conditions like IBD. It’s not unknown for hypothyroidism to create a raised result.

[Regenallotment in reply to Jazzw]

thanks for mentioning and completely understand, I am so sorry to hear about your Mum and will follow this up as another ’rule it out’ option. Much appreciated 🦋💚🦋

[Delgor]

It is good news and try to focus on that for the moment as a raised CA125 could just as easily be caused by other things such as uterine fibroids and menstruation (the latter of which you have been talking about)😂

[Batty1]

CA125 as far as Im aware is not a thyroid marker …. This test was one way I was diagnosed for early stage ovarian cancer 20 years ago. If this were me I would seek out a second opinion to a doctor that deals with cancer for women its better to be safe then sorry.

[Hypo32]

I am following this as I recently had a raised CA125 but a normal ultrasound of the ovaries. Symptoms that lead to the blood test started when my Levo was reduced. They put my dose back up and the CA125 went down but still slightly raised. GP is not worried as my ovaries look fine but I can’t help but worry we are missing something as I don’t feel right.

I have never had an ultrasound of my thyroid so I have no idea if there are nodules. I have never been offered one. I just get TSH tested and thankfully usually t4 and t3 too and GP confirmed antibodies when I was diagnosed

[Regenallotment in reply to Hypo32]

sorry to hear you have this experience too. Here is an update in case it helps you at all.

So the gynae tells me the raised Ca125 is not my tiny fibroids or ovaries most likely inflammation in the thyroid.

Today ENT told me it’s not the inflammation in the thyroid despite thyroiditis, it’s most likely fibroids.

My Women’s Health Nurse is professional but clearly pissed off with them both and ordering another transvaginal ultrasound and another Ca125 bloodtest. We’ll go for a second opinion if I get a second raised result.

Both appointments this week made me feel like a fraud, as if I somehow ‘wanted’ a cancer diagnosis. It’s a really weird feeling. I got very weepy with the gynaecologist, I don’t want a flipping mirena coil that will make me even more numb, depressed and despondent, she had nothing else to offer than put up with debilitating work limiting symptoms, and see me 6 months. The nurse was super kind and followed me out, gave me a hug and said don’t give up, if it all persists ring the Gynaecologists secretary and ask to see her sooner. They took a biopsy of my uterus which was very uncomfortable, still spotting 2 days later. Maybe that will give us a clue. 🤷🏽‍♀️ Ive followed you, keep sending updates. Let’s hope there is some weird undermedicated hypothyroidism link to Ca125. Sending hugs 🦋💚🦋

[JS1001 in reply to Regenallotment]

Hi !

I have been following this post as I am currently going through something similar. I have raised ca125 of 51 and clear scans of ovaries. I also have thyroiditis.

Have you ever gotten to the bottom of your raised levels? I hope you are doing ok x

[Regenallotment in reply to JS1001]

Gynaecologist I saw was convinced it was fibroids and the timing of the Ca125 test, tested again in 12 weeks and was under range. I asked ENT about it and they said fibroids too.

Hope yours comes down too, it’s very worrying 🤗

[JS1001 in reply to Regenallotment]

Hi! Thank you for replying! That’s so reassuring that yours went back to normal. Can I ask how long it took since your first test for levels to drop?

[Regenallotment in reply to JS1001]

They did another Ca125 12 weeks later, it went from 73 to 26 so as far as GP and gynae concerned, nothing to worry about. However as advised here I’ll keep my eye on that.

I’ve got an appointment on Monday about my low zinc with the GP and will ask if Ca125 needs to be monitored or not.

I did a bit of reading on the topic at the time and there seem to be some links between thyroid and ovarian cancers in some people.

For my own fascination/curiosity I’d like my Ca125 tested throughout my cycle along with thyroid hormones to get a whole month view but that’s not going to happen 🤣

[Hypo32]

my GP did seem to think it was an under medicated thing so I am trying not to worry and hoping the next blood test is ok but it is at the bank of mind all the time.

I hope you get some answers soon.