Not cool

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.

BB xx

31 thoughts on “Not cool

  1. ecutri

    wow. That’s a lot to take in. Hopefully Dr. Hero can go over all of this and explain in full detail what is of concern/what isn’t. And I hope that this new clinic has an honesty policy, its pretty crappy that the old one was looking into things without even making you aware. My Dr. tells me every little thing (whether that is good or not with everyone is unknown, but for me it really doesn’t bother me since I am not the one with the issues so I think she is just trying to re-affirm that I am doing the best dang job I can given the circumstances).

    I think you shouldn’t read too into all this medical stuff because it is all so confusing…they retested my thyroid even though it was on the low end of the normal level because studies have shown the lower the level the better. I think I was like 2.6 and she wanted me under 2.5 but I ended up under 2.5 at the start of my last round anyways and I read that the later in the day the test is taken the higher the level is so timing could have been a factor. It’s all a foreign language to me and I just put my trust in my doctor. I hope you can trust Dr. Hero as much as I trust mine as it does help with the stress…I hope Dr. Hero proves himself to be the best person to be your doctor and does nothing to make you think otherwise.

    I’m also quite happy to see your cycle started already…it seems much quicker than when mine returned, something like 7 or 8 weeks for me (to start the cycle and officially have an hcg level of 0) which was awful. I so pray for a wonderful Christmas miracle for you ❀

    Much love!

    1. barrenbetty Post author

      I’m totally with you… Honesty is best. I think there is always a way that they can explain it that wouldn’t freak you out. I also think all of those results are things that I might need to know in the future (or at least wouldn’t hurt to know).

      The thyroid test seems to be quite important in most places. Most stuff I’ve read said it should be under 2-2.5. I am definitely going to ask about it next time I see Dr Hero. Generally speaking the notes made no sense to me whatsoever so I’m probably interpreting it all wrong and freaking out over nothing!

      I was very surprised to have everything go back to normal so quick. I started having horrendous cramp 4 weeks after the ERPC and spotting, then proper AF last night so it was only 4 weeks 5 days. I’m a bit scared about what the antral follicle count and AMH test result will show, but nowt much I can do about it now apart from cross my fingers x

  2. ksirahsirah

    Betty- kudos to you for looking into your medical files and asking questions and researching. I agree with you that your dr’s should have told you everything -I was diagnosed with unexplained infertility for nearly a year until I kept asking questions and digging. Soon after my second opinion with another fertility clinic did I discover I had DOR, thyroid issues, and a uterine polyp that required surgery. It took nearly a year to get my thyroid levels controlled with meds- just hovering over 1.20 something currently. I think it’s important to know as much as we can- we are our best advocate always. Hope this new found information helps you forward.

    1. barrenbetty Post author

      Oh my goodness… That’s awful!!! I can’t believe you had to have a second opinion to find that out. I’m glad I got my notes and I know everything that they have tested me for and written about me – even if it’s bad. Feels like I have a bit more control of it all now. I’m going to ask my new clinic about my TSH level and see what they say. It seems borderline to me, but I’d like to know what they think.

  3. redbluebird

    Not cool at all! I hate when doctors feel they can keep secrets from us about OUR OWN bodies. Jerks.
    I don’t know much about prolactin or CA125, but I know I’ve had lots of blood test results that vary. I was worried about my TSH level at 2.85, although the doctors thought it was perfectly fine. I made my sister look to see what her TSH levels were during pregnancy, and they were around 4. So I figured I was fine. I did ask for them to retest this pregnancy, and mine was below 2. Weird. If I were you, I’d ask for it to be repeated, and maybe treated if it’s over 3.
    I’m glad you had the surgery & know it’s not ovarian cancer, because otherwise, it would be a whole lot more stressful!
    I’ll bet that if everyone read their medical records closely, they’d find something off. I hope your new doctor can help you sort this all out.

    1. barrenbetty Post author

      I think you’re right… Most people don’t read their medical notes. Who knows what we would all find if we did!! I’m going to ask my new Dr about TSH because 3.17 does seem a bit high to me. I should hopefully have a follow up appointment soonish once we are done with all the tests and scans. That’s interesting your sister’s was 4. I bet most normal people don’t have a clue what any of their levels are.. It’s just us infertile that analyse every single variation!

  4. Fertility Doll

    I logged on just to tell you that my prolactin was at 827!! The next test it reduced to 589 (still high) but not enough to put me on meds. Instead I chilled out. I really do think physical and mental stress can elevate it. Doc also said my PCO could be contributing to it – not sure how the two relate but hormones are complicated things! To get it down I stopped any form of cardio, I slept but tried to not oversleep and I quit stimulants. I forced myself to chill out completely. I’m not a Doc but I really do think yours might be related to pregnancy.

    Things aren’t cool but Dr.Hero is going to help you untangle all the knots. Wishing you so much luck for tomorrow’s session with the dildo cam. Dildo cam always leaves me feeling so awkward.

    1. barrenbetty Post author

      Aww, thanks for finding out! Mine were all around the 630 mark apart from one that was randomly 348. I read that stress and PCOS can be a factor. I have definitely been somewhat stressed, but unless PCO stands for Profoundly Crap Ovaries, I don’t think I have PCOS. I gave up caffeine just before I started IVF so maybe that will have helped. From my time with Dr Google I think it has to be over 1000 before anyone even looks vaguely interested in it.

      It’s been a while since I had a date with the dildocam. Probably CD2 is the worst of all possible times to be dildocammed but hey, what can you do?!!

      1. lamentingthelentil

        I have never heard the word gash. And, because I find you way more entertaining than Webster’s, I’m going to avoid looking it up and instead rely on one of you for a definition. πŸ™‚

      2. barrenbetty Post author

        Oh no, sweet lentil. I am not explaining the word gash. It is a bad, bad word in English that only someone like turtle would use. Don’t google it, for the love of god, no. If you want to learn something English off us, this is not the thing to learn.

  5. Positive Pants

    IF just keeps getting more confusing. I’ve never heard of prolactin or CA125 or the other one. It seems if we don’t do our own research and ask questions that Drs think it’s ok to not investigate further. Wtf! That ain’t cool! All the best for your scan. Fx your new Dr is da man.

    1. barrenbetty Post author

      I hadn’t heard of anything either until about 6 months ago and now I am an expert. I sincerely hope you never become an expert too!! I’m a bit scared about the scan and test results but I’m pretty hard. I can handle it (I think).

  6. So, you're saying there's a chance?

    I can chime in about the TSH. For your average Joe having a TSH of 3.17 isn’t a big deal, but since you are TTC, it really should be no higher than 2.5. I would also ask them to test for antibodes and your free and total T levels. This helps give the Dr the full picture of what’s going on πŸ™‚ You are right, I bet very few “normal” people know what their levels are, but the better educated you are, the more you can do to increase your odds πŸ™‚
    P.S. Don’t forget to draw Dr. Hero with a cape the next time you see him!

    1. barrenbetty Post author

      Dude, in my memory I’m pretty sure he was wearing a cape IN REAL LIFE!!!

      I’m going to have to write down what you said about TSH and take it with me when I next see him. In my notes it did say that I had no notable antibodies, but it didn’t say specifically what they tested for. I had no idea TTC would ever get so complicated :-/

  7. lamentingthelentil

    jesus. Isn’t it, like, i don’t know, ILLEGAL to keep important health information from you that could impact your treatment decision making???! If it’s not, it sure as hell should be. It’s certainly unethical at best. We shouldn’t have to pay extra money to do the fucking work ourselves.

    Also, my TSH was somewhere right around 3. Can’t remember if it was juat over or just under. But I so know that my doctor was completely unconcerned, even when I asked her for the fifth time.

    1. barrenbetty Post author

      It should be illegal. I was full of hate for them today, but went to my new clinic and they were all so lovely and friendly I couldn’t keep hold of the hate. I found out my AMH is low and the dose of stims they gave me before really inadequate for my circumstances. I feel like the whole thing/a year of my whole life has been a farce. Just wish I’d given up on the NHS sooner and paid for it myself. Nevermind, onwards and upwards.

  8. newtoivf

    your old clinic is everything that is wrong with the crap parts of the NHS. I’m so sorry you’ve had to deal with this shit on top of everything else. As you know, I’m pretty definite on how cool you are (its a lot btw). hope today goes well xx

  9. missymakes

    As a BRCA-1 carrier, to hear that they withheld information about a high CA125 result makes my skin crawl. Granted, it’s not the most accurate predictor of ovarian cancer, but it’s one of the only half-decent screenings available for a cancer that is notoriously hard to detect. I’m glad your ovaries are okay, but horrified to hear about the practices at that clinic and so glad you’re now with Dr. Hero!

    1. barrenbetty Post author

      Geez, tell me about it. I’m glad it turned out to just be the endometriosis (I presume), but I do think it would have been useful information for me to know for the future. What if I had the test again for some reason, and it was high again? Wouldn’t it be better for me to at least know this has happened before?! I’m so glad to see the back of them. Good riddance! Hope you and the twinnies are doing okay xx

    1. barrenbetty Post author

      Thank you! My AMH is 9.66 so not terrible, but not good. I still have no idea what I’m doing next. Sigh. I need a new plan before I go totally mental.


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