I haven’t been that cool the past couple of weeks. I know, I know, you can’t believe it. Like I can be anything other than way cool. I feel like someone I don’t know. I also feel like I’ve said that roughly 38 million times before. I really need to work on my vocab skillz. Anyways I’m too lazy, so: I feel like someone I don’t know.
As I’m sure you all well remember, I found out some health problems I didn’t even know I had after reading my notes from Old Clinic. While I was at it, I also paid for a full copy of all notes from my endometriosis treatment, tests and operations. It caused me a not insignificant amount of distress reading my IVF notes last time so I decided not to read these. I was going to let my husband scan them and highlight anything drastic he thought I should know to stop me reading the whole thing in great, unlimited, frantic/mental detail. I signed for the notes at 10.45am today. I read the entire folder by 11.15am. Twice. Sigh.
Things I have learnt that maybe I didn’t need to know:
1. My CA125 test result was high. Endometriosis can cause CA125 to be higher than normal (up to 100 kU/L; normal is under 35). I discovered today that CA125 levels are over 300 kU/L in 50% patients with stage I ovarian carcinoma and in over 90% of patients with stage II, III, or IV disease. Mine was 312. They recommend that anyone with results over 200 are seen quickly to rule out malignancy. Did I need to know that at the time? From my notes I can see that they were checking for unusual tumours as well as endometriomas (they did find something suspicious, but on closer look decided it was benign). I obviously don’t have ovarian cancer, thank god, since they’ve been inside and had a good old rummage around my ovaries and found nothing sinister. I don’t feel comfortable that they thought this was a possibility but never told me they were investigating it.
2. My prolactin levels have been elevated on and off. Some tests were okay; the highest was 630. It should be under 500. This is being repeated at New Clinic so hopefully it is back to normal. I understand that it rises in pregnancy and I definitely still had HCG in my system when they took the blood test. I don’t know how that will effect it, if at all.
3. My TSH is 3.17. Now, as far as I know 0-3 is “normal”, but many clinics like it to be under 2.
All the information I had from Old Clinic was that my thyroid and prolactin levels were “normal”. They clearly should have said “normal-ish”. They are flagged and marked as “high” on my blood test reports, as was the CA125 marker.
I’ve already given a copy of all my test results to New Clinic to do with as they please. I am relatively sure that Dr Hero will know more about them than I do. The only benefit I seem to have gained from reading my notes with a fine tooth comb is extreme anxiety. Not worth it?
I’m having an antral follicle count tomorrow. It’s supposed to be CD2 and I have no idea whether it is or not. Something is going on, but it ain’t normal. Whatever. I’ve decided to go anyway. My cycle has interestingly decided to return on the final day it possibly could to keep the option of a cycle before Christmas open. Excellent. It is entirely shit at everything it is actually supposed to do, but at least the bugger is punctual.
I should be able to get my AMH results and my repeat prolactin results tomorrow as well. This combined with my little Googling-test-results-seizure earlier is not making me feel any cooler. I am decidedly not cool. I’ve been drying out recently but I’d quite like a glass of wine to look forward to later… Until Google told me high CA125 levels and prolactin can be a sign of liver disease. They are also signs of a million other things and I’m pretty sure I diagnosed myself with kidney failure too at some point today.
Geez, this is long. If you just jumped from top to bottom – in summary:
I read my hospital notes again. Not cool.
I found more things I’d not been told before. Not cool.
I spent quality diagnostic time with Dr Google. Not cool.
I have to go for a scan tomorrow. Not cool.
I should get my AMH and prolactin results. Not cool.
I am not cool.
I could go on (pregnant friends complaining to me about ridiculous pregnancy problems the first time they see me after a miscarriage following IVF is NOT COOL), but I won’t.