During the days following my diagnosis I read the treatment plan over and over, sitting with the paperwork in my hands I felt like I had finally found the pot of gold at the end of the rainbow, I have my answers and this is my treasure, the treasure that could lead to our very own rainbow baby.
I had been very overwhelmed on the day to the point that I think I was overly negative about the findings but it was more a case of finding the get up and go in me to try all of this so that we can succeed. I had lots of questions that I wished I’d asked in the moment, I felt like I needed a follow on the follow up so that I could go over it all in more detail.
Over the coming days I studied the treatment plan and all of my results for hours and hours and I created a list of questions that I sent via email to the consultant. Instead of being so daunted by the huge bag of medication I decided this was my treasure, my answer that I’ve been waiting for all of this time. It’s really important to know the treatment plan well so as to not get it wrong.
I began the treatment for my thyroid straight away as it can take up to two months for thyroid medication to take effect and with this being one of the problems that can easily be controlled with medication, I think that it’s best we iron that out so that it’s one less thing to worry about and wonder if it’s the cause of any of our losses. I also started a crazy amount of vitamins and supplements as requested by the consultant, my pill box is actually quite hilarious if you were to see it!
With the MTHFR I have been prescribed a high dosage of folic acid on top of the regular amount I also take from my prescribed vitamin regime. Now this is something that there is a lot of conflicting research around and on the forums I use a lot of women are against this treatment.
Hundreds of women argue that if you are diagnosed with the MTHFR gene that you should not be given high dose folic acid and that you need to be taking methylfolate which is the natural form of folate, whereas folic acid is the synthetic form. Many women and articles argue that folic can do more harm then good to women that are homozygous.
The above is something that I brought up in my questions to the consultant, the response was that his practice is to use folic acid and he doesn’t believe the research surrounding folate amounts to enough evidence for him to alter that practice. For once.. and only once I have decided to do as I’m told and not to self medicate. So I am now also on the high dose and normal folic prescriptions.
This actually reminds me of something I hadn’t mentioned in my earlier blogs but brought back how desperate I was a few months back. When I was getting nowhere with the nhs consultant who refused to allow me to try progesterone with my next pregnancy, I went to extreme lengths of even purchasing progesterone illegally from the states and getting it through customs!
That’s how desperate I was and how much I believed in my own findings and research, I still 100% stand by the fact that you have to be your own advocate. However I don’t promote going to the extreme lengths that I did in a time of desperation, luckily I never got around to taking the progesterone I got from the states as I found a doctor in time that was willing to listen to me and agreed willingly that I needed the prescription for progesterone.
You see I can see straight now that my actions were a bad idea, but in that three month wait when no one would help me or listen to me, I would go to any length to help myself and it could have potentially had a serious outcome.
Ok so let’s talk about the next part of the protocol, combating the natural killer cells that are the most likely cause of my three miscarriages. One of the most expensive tests that we paid for was cytotoxicity in which different medications and dosages are tested against your natural killer cells to see what has the best level of reduction, lowering the level of killing into a safe zone for a pregnancy to survive.
The treatment for the nk cells involves taking a high dose steroid from ovulation to suppress my immune system hopefully allowing the embryo to successfully implant without being attacked. Then once I get a positive pregnancy test I will need to travel to London for transfusions every 4 weeks that will help to further suppress my immune system and to keep my killer cells at a level that is safe for the baby.
Also from a positive test I will start progesterone suppositories to help build my own natural hormone levels and to prevent early miscarriage bleeding. All of this treatment would be weaned off if I ever successfully reach 16 weeks pregnant which would be a safe zone to be weaned off the medication. From this point the placenta would be fully functioning and providing everything the baby needs and my own cells wouldn’t harm the baby.
It’s the high dose steroids that come with the most side effects and are difficult to handle, but I’m not going into it blind or naive as I have read the honest experiences of many women on forums online that have had a pregnancy on immune suppressors.
I guess at the end of the day I can handle the side effects and how awful the treatment may make me feel, if it means I can be pregnant and I can protect my baby so that I can finally hold them in my arms. It seems every time I register my pregnancy with the antenatal team and that green booklet lands in our postbox I’m doomed and it’s over, maybe this medication is the answer, maybe my body won’t let me down, maybe this is our treasure.