Ca125 blood test too high

[Sindilou]

Hi everyone. My ca125 was tested as I had pain in my abdomen. Was raised to 50. Had all the tests and nothing found. Scans etc and a lap procedure to check for endometriosis plus a smear. Have had it tested a few times as they thought it may be my cycle but in and off my period it is still too high varying between a few points but still around 48-56 each time. I’ve been discharged but doctor wasn’t very encouraging saying something’s probably wrong but she’s not sure what!!! Has anyone had this and big had any other explanations for it being high such as cysts or endometriosis which I don’t have. Just really worried a cute handy been found and I may have cancer somewhere else in my body. Thanks for reading.

I have a high ca125 regularly monitored and have had an MRI scan to ensure everything OK. Nothing found, but I have adenomyosis and been advised that gynie issues will show a high ca125, without any cancer being present.

Thank you for your reply. My concern is no gyne issues have been found I think I would be ok if I knew what was causing it

Bump! Has anyone had this and been okay?

Mine was over 100 - I had endo and an ovarian cyst, which was benign. CA125 can go up into the 1000s if you have cancer, so try not to worry, but don't let the doctors fob you off with 'we don't know what it is' - keep going back until they get to the bottom of it.

Thanks but I have had no reason for mine

It can be elevated in some healthy individuals, you may just be in the high normal ( approx 1-2% of people). No history of pancreatitis or liver problems?

No nothing

Not sure what else I can do as I have been discharged as nothing g was found. Scared I have something growing in me and nobody gives a shit

Ca125 in itself is only an indicator for further tests…as tests have been done nothing has been found, and the Ca125 is only “relatively” slightly raised, it’s not likely to be anything significant unless you have persistent symptoms. Usual advice is to seek GP advice if you have persistent or worrying symptoms.

I would suggest maybe you have a naturally high CA125 level. I had mine tested last year and had never heard of it at the time. The nurse phoned me to see I needed to go in for further urgent tests as my level was 584!!! I did have a cyst but benign, which has got smaller in the past year, and they diagnosed endo. When they tested again by the way it was back down to 50ish. It's not a very accurate way of testing for anything apparently, more of a preliminary thing to assess if you might need other tests. Hopefully that reassures you a little OP.

Thank you very much. I think k would be ok if I knew I had endo as that can raise it big I don’t have that

But not big sorry!

Some people always have a raised CA125. It's an ovarian tumour marker so unlikely to relate to anything else but should be kept an eye on.

It can be raised for other cancers apparently such as bowel and breast.

Should I ask for a ct scan?

It could be related to your parathyroid I think? I have hyperparathyroidism and I’m sure that’s one of the markers. I think k weight loss was another symptom. It’s been 10 years since I was diagnosed so I’m a bit hazy about the ins and outs now.

Edited date of diagnosis.

My thyroid thing (tsh I think) was 3 which it said normal

Parathyroid is not the thyroid so the tests for thyroid function won’t highlight an issue if there is one. It was picked up by chance with me after a very thorough GP took an interest. I had one of my parathyroid glands removed and am monitored annually for further problems.

I suppose it is possible although I haven’t lost weight or anything x