I had my hospital appointment on Friday morning. Sorry I didn’t have time to write an update straight after as we had to rush to get on a plane to go to northern Scotland for a long weekend (a much needed relaxing break after all the recent stress).
The appointment had been fitted in between other appointments and as a result it was pretty rushed. What I picked up from the high speed Italian was that I can proceed to do the next FET with our remaining genetically normal embryo on our next cycle (starting around 18 May). For the antinuclear antibodies they prescribed me low dose aspirin daily to start taking from now and also heparin shots which they told me to start taking if I get a positive HCG beta.
On the way back home after the appointment I realised that I was pretty frustrated with how things went and have three issues…
a) The beta date for my last embryo transfer (which resulted in a chemical) was VERY late: 14 days past a 5 day transfer so 19 days past ovulation. The HCG level was only 89 and then lowered on subsequent betas which makes me think that the miscarriage happened before the beta day (i.e. the HCG had already peaked before and was already lowering by beta date). So if that happened again then starting the heparin on beta day would be WAY too late. To remedy this I’m just going to take matters into my own hands and start peeing on sticks from earlier on, and if I get a positive I’ll start the heparin early….frustrating but at least I can manage this issue myself.
b) They tested me for the MTHFR gene mutation and I came back as heterozygous for this which they seemed to think didn’t matter at all. I had read online about how taking synthetic folic acid is potentially bad for those with a MTHFR mutation but they just looked confused when I asked about it so I had to just give up on that. I’ve ordered some methylated folate supplements online and will start taking them when they arrive.
c) The final issue is the most worrying to me: almost everywhere online where I have read about antinuclear antibodies (ANAs) refers to taking low dose Prednisone as a treatment before and during the embryo transfer to suppress the immune system. There was no mention of this in the appointment, and as we were so rushed (and it was in Italian) I didn’t have time to ask.
I’ve emailed the doctors ask about the MTHFR mutation and also the ANA issue….but they aren’t guaranteed to respond (this is public sector not private and so they are not obliged to respond). If they don’t respond by the end of the day I am going to book in a private appointment with them to ensure that I can get my questions answered before the next cycle.
So progress I guess, but feeling pretty frustrated. I can’t begin to explain to you how stressful this all is when it’s so complicated and in a foreign language and rushed. I’m not feeling comfortable at all about it at the moment….but will continue to fight for some answers before we take a chance on our last little embryo.