I had tormented myself for months every single day wondering if I’ll ever get answers and finally that day had come. There was a mixture of excitement and fear inside me and I felt like I couldn’t concentrate on the journey down to London, to add to the stress a little our train was cancelled and we were sprinting through crowds diving on to tubes as the doors closed behind us. We had given ourselves enough time so that we would arrive at 12:30 for our 1:30pm appointment but we arrived at 1:25pm.
Everyone’s reassuring smiley faces and impeccable customer care made me feel immediately comfortable once again and I didn’t have time to sit and get worked up in the waiting room as he was stood at his office door waving as we walked in. As we entered the office I could see paper work set out all across his desk with my name on, he was asking how we are etc and I just wanted to say just tell me what’s wrong with me now! I refrained and patiently had a little chit chat..
Then we got down to the nitty gritty, the most daunting conversation of my life so far and I still go over it and analyse it in my head most days trying to remember what he said word for word. I had wanted so much for him to have found what the problem was but I think what I hadn’t prepared myself for was that there could be so many different factors that were a problem and that I had more than one issue going on.
The consultant started by saying that I would be requiring a complex treatment plan due to my results and that without treatment he believes I would not have a successful pregnancy because my body is so aggressive. With him using the word aggressive I knew straight away that I must have an auto immune disorder and high natural killer cells.
He said we would start with the more solvable issues and work our way through, he had a yellow highlighter pen in his hands and was flying through pages and pages of results highlighting things and saying do you both understand? I was nodding my head and could feel tears building up in my eyes but was trying to hold on to them and not let them roll down my face, my legs were shaking and I was trying to focus on his words but inside all I could think was this is way worse then I thought.
The first issue is my thyroid function (TSH) is elevated. The result was 3.2 but the consultant likes it to be below 2.5 for it to be optimal for pregnancy. It is technically classed as in ‘normal range’ on the nhs but this isn’t taking into consideration that in a pregnancy state it would be elevated. When pregnant your thyroid function increases and if it is already at the higher end of normal it is potentially rising too high in pregnancy and can be a contributing factor of miscarriage.
All of my other thyroid antibody testing came back in normal range and therefore is not a problem. The consultant said he would be prescribing me thyroxine to lower my TSH level into the optimal range, this is checked again in 8 weeks time to see if it has come down enough or if the dosage needs to be altered.
The next result he highlighted was that I was found positive for MTHFR gene mutation. You are found to be positive for this if you have inherited a gene from both parents. The gene is called heterozygote and if found present from both parents you are a carrier of heterozygous. In less complex terms this is to do with how your body processes folic acid and a carrier is unable to absorb folic acid both synthetically and naturally. The consultant prescribes a way higher dosage then what you would get from a pre natel in the hope that some will get through to your body.
With the MTHFR he seemed less worried and that it’s just more medication but like the thyroid can be medicated. I haven’t had chance to do much research into this yet, of course I will obsess and read endlessly about it so I will have to report back with an update on my developing knowledge in this area. The only thing that does concern me is that in some of the forums I take part in there are women that are found to be heterozygous and that is their only problem and they suffer from recurrent pregnancy loss.
The third and final results that were a problem were the ones that I was dreading but I had a gut instinct all along that this was my problem, and this was why I chose to go to this doctor because he is known as ‘the fertility king’ when it comes to immune issues. There are three categories when it comes to NK cells low, borderline and high, my NK cell count was high on my results with a cytotoxicity of 27% (this is the level of killer cells)
The cells need to be under 20% for them to be calmed enough to not kill the foetus, but we finally had the answer. The consultant said that my body is a hostile and aggressive environment for a pregnancy and the reason all of my losses happened between 4-6 weeks was because it’s more than likely these killer cells were attacking.
I felt relieved in a way that I wasn’t crazy and I had done the right thing pushing for this diagnosis, but also terrified that my body will never let me carry our baby. The consultant said he would want to treat me with a complex NK cell treatment programme which involves two lines of treatment. High dose steroid protocol and also intralipid IV transfusions, this part blew my mind.
On the train to the clinic I said to my husband I just really hope I don’t need the transfusions and it’s way simpler then that, he said well you know our luck…. and here we were being show the transfusion bags. The consultant went through the full treatment program in detail which is very daunting and he told my husband how bad the side effects and process can be, which I think definitely hit home with him.
We left his office and sat in the waiting room whilst they prepared the start of my medication. I burst into tears I couldn’t hold back the stress inside my body any longer, he took my hand and said I don’t have to go through all of this if I can’t, and in that moment I was unsure about all of it. What if we try and I can’t handle the medications? What if we try and fail? How many times should we try it?
The train journey home was long and we talked the whole way, trawling through the pages of results and treatment processes and looking at all of the medication. I didn’t feel optimistic at all I could barely bring myself to even think about it all. I finally felt like I was going crazy, all I wanted was answers and now I had them I didn’t want them at all! I felt drained and beaten and most of all I hated my body right now for letting me down so badly.
After the 4.5 hour journey home I stepped on the doorstep and unlocked the post box to see if we had anything inside. I saw the nhs stamp on the top of a white letter and knew straight away it was the follow up letter and results of the karyotyping test from the nhs consultant, that I loathed for not listening to me.
I opened the letter, to my disbelief, it was a letter of discharge that said the nhs had found the cause of my miscarriages to be ‘unknown’ and that all they could offer me was an early scan if I was to reach 6-8 weeks of pregnancy. They never did any testing other than the karyotyping and one blood test for a clotting disorder! I have never felt anger like it I was pacing up and down the hallway crying uncontrollably because I was so frustrated.
If I never took this into my own hands and just went along with the service the nhs had offered me I would be non the wiser and just continue to have loss after loss, it makes me so sad that so many women must receive letters like this and just continue losing pregnancies and also losing time, which I think is so precious in this situation.
One positive is that the karyotyping result found us both to be chromosomally normal and that does mean that we could have a child that is biologically ours one day even if my body can’t be the one to carry it.
It’s a lot to take in isn’t it, I’m sure your mind is as blown as mine, I need time to process it all and to build some emotional strength before I know what happens next, I’m thankful for the options I have though and I will come back fighting once I’ve picked myself up off the floor.
Sam xxx
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