I'm an old timer from this thread. We moved across to Facebook so a lot of us haven't been on here for a long time, but thought this might be of interest to some of you now, and might save you some of the heartache.
My history is I always get pregnant every month we ttc. I had a son in 2010 and another son in 2012. Had mc1 sept 2013 and then had a mmc with ERPC in March 2014. I then had another MC Jan 2015 when would have been about 5-5 1/2 weeks. I had standard NHS tests and everything came back normal apart from they said I tested positive for lupus anti coagulant. Great news they said, it's one of the most treatable causes of Mc. They prescribed baby aspirin, clexane and progesterone just in case. I went away full of hope. I then had early MC in March, May, June, July and August 2015. Over these months I had tried various combinations of progesterone from 7 dpo, progesterone from BFP, progesterone from 14dpo even if I knew I had a BFP, was told after the March MC that they though aspirin could be harmful and to stop that, clexane from BFP, clexane from just after ovulation. I went to Coventry in Nov 2015. Was told everything was normal re my lining etc and NK cells were very normal, but that I had ovaries covered in cysts. To their credit I was prescribed metformin which I have been on for nearly 11 months now. I again thought great, this is a reason, get the ovaries sorted and all will be well. The NHS consultant meanwhile told me to try clomid as it would shorten my cycles. I followed their advice and did clomid in Jan and Feb 2016, whilst also following prof B's advice to use progesterone from 7dpo. No bfps for those 2 cycles which is so unlike me as I get pregnant every time. Prof B thinks progesterone has a contraceptive effect on me. I have since been told by prof q that in research more babies were born to those on a placebo than to those taking progesterone and the statistics were the same re people taking clexane. So anyhow, prof B said to take progesterone from 14 dpo and that he didn't see any point me taking clomid as I am ovulating fine. I had MC's in March, May, July and August, the last one prof Q said to not bother taking any drugs as they clearly weren't working. I'd gone back to see her via the NHS in July and Sept (you just need to ask your GP for a referral). She ran more extensive tests than the usual NHS ones plus repeated some I'd already had and everything was normal, including the lupus anti coagulant test showing as negative. She said all they could do is offer a repeat scratch and biopsy to see if my NK levels were low as a one off blip last year and might be higher now. Whilst there this time they also did a new test called cd138 which tests for some sort of infection. I begged them to let me try prednisolone (I've asked them several times before) but they said that unless their tests come back as high NK they can't do anything. They also can't put me on their sitagliptin trial as my cycles are not less than 32 days long. Prof B told me he believes my issue is that I'm having ectopic pregnancies and said only IVF will help me.
Now at this point I was feeling rather hopeless, but struggling to believe him, they had previously said it was bad luck and just need a good embryo, but after 12 losses I don't believe they were all abnormal and I don't believe that someone would have 10 ectopics in a row that would all resolve themselves without medication intervention.
The group I am part of consists of at least 3 others who have been told the ectopic theory by prof B. One now has a baby (not via IVF) and 2 are very much pregnant and again not via IVF, but by taking prednisolone. One of these I spoke to more than the others as she was much more active on our threads. She had a similar pattern, lots of early losses, and after Coventry and the ectopic/IVF scenario, she went to see Mr Shehata on the NHS. She was diagnosed with high blood NK's and the next pregnancy she had didn't end in a MC, and she is now about 17 weeks. So I asked my GP to be referred to Mr Shehata at Epsom Hospital. I went and had the tests and went for my results last week. I also have high blood NK's and my lupus anti coagulant test is showing positive again and they said that unlike other doctors, they think your TSH should be below 2 or it could cause a MC (normal is viewed as being up to 5, mine is 3.75 but it is their belief that it needs to be below 2). They have now put me on a new protocol, thyroxine to start immediately and take until after a baby is born, prednisolone from ovulation, and then from a BFP progesterone, fragim, ranitidine plus some supplements that I was already taking. I will resume ttc at the end of dec/start of Jan depending on when I ovulate and I'm really hopeful that I now have the real reason for having so many losses.
I backed the wrong horse 12 months ago. I was so convinced by the Coventru theory but I've come to realise that whilst they mean well, they are guessing as much as anyone else. They used to give progesterone and clexane as standard to everyone. They have told me that apart from the select few that have low prog levels or a blood clotting problem, they are not likely to make a difference. They won't give pred unless your uterine NK levels are high. Yet I know of 3 people without even trying to look hard who found they had high blood NK's and it was pred that made the difference. So either way, high uterine NK or high blood NK the treatment is the same, unless you pay privately for either intralipids or IVIG, but the people I'm referring to were on just pred. It's looking more likely that pred is the key and it doesn't matter how the NK's are diagnosed, and that the blood tests are showing a better result and that the level of uterine cells can vary month on month.
So to anyhow who reads this, whilst I appreciate all Coventry tried to do, I think they are perhaps too blinkered and that if you can get your GP to refer you to Shehata's clinic in Epsom it could be the best thing you may ever do.
I hope to be joining the people I know in getting a sticky BFP soon and I will email prof B to let him know as they do have the best intentions, but putting all my hopes into Coventry has wasted a year of my life and another 4 losses and I am hoping by sharing my sorry tale it might help others from doing the same.