Always trust your instincts

~ A

Today I met up with the rheumatologist doctor who helpfully arranged for me to have approximately 750,000 different immune-related and other types of tests a few weeks ago. As I have Raynaud’s Syndrome which can be an immune-related condition, we have been investigating the possibility that I could be having some immune related issues with keeping embryos alive and growing in my uterus.

I really like my rheumatologist doctor, let’s call him Dr J.  I wish he was actually my full time doctor, but he is a specialist so I only get to hang with him for special stuff.  He went through the extensive (and expensive!!!) test results with hubby and me and tried to play it cool that mainly I’m perfectly okay, but that there are a couple of things I should look into.

What were those things you ask?  Well number one is my thyroid.  Yes, that thing that practically every other IVF doctor in the world tests before starting treatment.  Does my doctor test for this?  No.  I am furious.

Turns out that my thyroid TSH reading comes in at 8.01. Ideally you want to be at 1.0-2.0 for conceiving (normal is 0.2-5.0). This means that I have hypothyroidism. A quick google will show you that hyperthyroidism is a cause of miscarriage.  Oh do you think the IVF doctor might have mentioned that to me after TWO CONSECUTIVE MISCARRIAGES?! No.

Thyroid issues are treatable fairly easily it seems and so off I go next week to chat with an endocrinologist.  The list of doctors on my payroll continues to grow!

Then there is a nice thing called Antithrombin III.  It’s something all about clotting. A normal range is 260-447.  Mine came in at 244 so a little bit low but maybe not super scary low.  In any case Antithrombin III deficiency is another cause of miscarriage.

Finally, there are some things called Complement C3 and C4.  These are also related to immune stuff.  Again, my readings come in below normal suggesting I have a deficiency here.  These are also linked to miscarriage.

Anyone noticing a trend here?

So let’s have a recap of things that could be causing my recurrent miscarriages:

  • Hyperthyroidism
  • Antithrombin III deficiency
  • Low complement C3 and C4 proteins
  • PCOS
  • Surgery on a fibroid 3 years ago
  • My age (37)
  • Bad luck (IVF doctor’s diagnosis)

My BFF who is an expert in all things immune-related and pregnancy has been giving me some great advice about what to challenge the doctors on.  If there’s one thing I have learned for all of this it is to of course listen to your doctor/s but don’t take everything they say at face value.  DO YOUR OWN RESEARCH!!

22 thoughts on “Always trust your instincts”

    1. It’s very annoying but I am particularly frustrated as I’m entirely privately funded so it’s not like he’s not telling me because the NHS don’t want to fund it, FFS! (No NHS like service where I am)

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      1. I think the frustrating thing for me is the NHS do quite routinely offer laparoscopies (procedure I’m pushing for). I have two close friends that were given one BEFORE IVF and it helped determine their issues and their treatment worked first time. I kind of feel like in the beginning my concerns weren’t treated seriously 😔. Now another failed transfer this month (4 in total in now) surely they have to give me one when everything else has come back clear. Why do we have to fight so much??

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      2. NHS is flipping spectacular in general (I was 10 years in London) but the service does fluctuate so much based on where you are and what the doctor thinks. All I’ve learned is to be aggressive about what you want. The other option is to go do the laparoscopy privately but it will be a little ££££! My IVF doctor is actually bloody fantastic at laparoscopic surgery – he took out my massive fibroid 3 years ago and I only have a couple of tiny marks to show now. Pop over here and I’ll sort you out 😉 Just don’t expect him to check your thyroid!! :p

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  2. Wow that is infuriating that you are only finding this out now, but at least you now have some concrete things to follow up on. Good on you for going and getting this done off your own back.

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  3. Guess it would be worth finding out asap if any of those conditions have any impact on the ‘stim’ part of the IVF cycle – or whether the miscarriage risk is only once the embryo is implanted?

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    1. I think in an ideal circumstance you would want everything to be holistically aligned but that’s very difficult. In any case I think these issues are mainly to do with the implantation/growing stage in the womb.

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  5. I just went in a couple of months ago for my annual and have been abnormally spotting. So frustrating because I think it’s linked to a couple of factors but of course we have to jump through some hoops before I am allowed to be referred out to a specialist or have blood work done. Please keep me posted on the hypothyroidism developments. My cousin has known about hers since she was about 2 and has been on synthroid since then. She has to get her levels tested every six months to make sure her prescription is correct.

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    1. Not right now. It’s a bit complicated as I’ve started stims and also my dr has a close connection to my husbands family so it will be a Very Big Thing if I was to change. I have to decide if it’s worth the political trouble to go to another doctor.

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  7. Hi there! Well its good that you know now… but to be honest I am appalled that good old doctor didn’t suggest you test any of these things given your history!! To be honest I was very disappointed in him and am really happy I made the decision to change clinic as he really does not listen to your concerns and treats everyone the same (cookie cutter approach) … it seems like they have a fairly good lab so their success rates are decent, but if you are a slightly more difficult case then it will take you ages to get answers with his approach… Actually I was tested for all this stuff because I made a big fuss and demanded further testing so we did a RPL panel (even though my issue was implantation failure and not miscarriage)- anyway my thyroid, antithrombrin, protein c etc are within range but I had some anticardiollipin antibodies come back slightly out of range which doc said is nothing to worry about bla bla anyway my new doctor is taking all this into consideration and adjusting his protocol accordingly whereas you know who was just planning on trying the same old thing once more if I had stayed with him!! also it really is very common to have thyroid issues and completely common knowledge that they cause fertility problems so its quite bad that wasn’t tested earlier… wow! that really ticked me off!! anyway on the upside you are definitely on a good path now and I think most of these things are easily treatable (thyroid definitely is) so hopefully this is just what you needed 🙂 xxx

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    1. I am so on the edge of leaving him! If I wasn’t already engaged in this cycle I would be off!!! So if your doc gets you preggo I am totally coming over your way!! How do the costs compare?

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      1. Well actually we are going with a clinic in Athens (where I had the laparoscopy) – partly because they offer some extras e.g. Embryoscope and some sperm sorting procedure which we are hoping will help and partly because I like the idea of taking some time off, going to Athens and trying to relax/ enjoy myself during the whole thing… we also have an apartment in Athens so its quite convenient for us. I spoke with 2 doctors there 1 was significantly cheaper but I liked the more expensive one better so we are going with him… The cost is still a bit cheaper than Cyprus although the first doctor was a much more significant difference. So far I am happy with this doctor and he cooperates with a gyno in CY at Apollonio who will monitor me and report to him at the beginning of the cycle, then we will go to Athens. However I think I did mention to you another doctor in CY who I visited and I also really liked (fyi one of his first questions was whether I checked my thyroid!!) and was between him and Athens, so if you want his details just let me know.

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      2. All sounds pretty amazing to me. I’m going to stick it out here for this round and then I’m off somewhere after that. So he better get his sh1t together pretty quick. So happy you found someone great though. I’m really optimistic for you!!

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  8. oh wow, I am also feeling pretty mad at your IVF doctor!! Why on earth didn’t they check your thyroid before now? It is not the first time though that I’ve heard of IVF doctors not doing enough testing and I’ve friends who ended up going through unnecessarily rounds of IVF/IUI that wouldn’t have worked anyway but they didn’t discover until later through another doctor’s testing. Anyway, hope you are doing well despite getting all those results back. At least you know which areas to focus on now xx

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    1. Thank you. My anger is growing as I hear of how much more conscientious other doctors are. Mine has gone on holiday now so I’m going through the stims process with no observations/scans etc. Makes me really question my choice to stay with this doctor. If this round does not work I will be furious and I will not be staying with him a moment longer! You live and learn but it has just fostered a feeling of mistrust. It’s not good if you don’t trust your doctor… xxx

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