Sunday 26 July 2015

Flu/Whooping cough vaccination & MTHFR

Our doctor has recommend I get a flu and whooping cough (pertussis) vaccination between 28-32 weeks of pregnancy. She said to do this so that the vaccination is passed onto the baby when it is born, hence protecting it.

In the old days I would blindly trust what the doctor recommends - but, now, seeing their knowledge of  MTHFR is so poor, I feel I have to be cautious of everything. Especially seeing MTHFR and vaccinations are linked to autism. So I'm going to research the internet and talk to my naturopath.

This is a pretty good article convincing me that a vaccination maybe NOT a good idea:

http://www.safeminds.org/blog/2014/09/24/physicians-assessment-flu-vaccines-pregnancy/

There's some threads of discussion and information on vaccinations in general:

http://mthfr.net/forums/topic/mthfr-and-vaccinesimmunizations-contraindicated/

http://vaxtruth.org/2014/09/susceptible-groups/

I'll keep updating as I find more information. Please comment if you have any thoughts or ideas on this.

Sunday 19 July 2015

15 weeks - another success

Just had my 15 week scan. The receptionist at the clinic instantly commented on my bump. According to my husband I really do have one!

Was so nervous last night, didn't really sleep, so it was a relief to see the little thing doing sit ups when the doctor scanned.

Here is a photo:


Wednesday 15 July 2015

MTHFR & pregnant - debate of when to stop Clexane

As mentioned in a previous post, both my obstetrician and my IVF doctor told me to go off Clexane at 12 weeks. My naturopath said to test for folate, homoststine, and thyroid first, and if they are healthy then it's OK to go off. Reading online, and hearing from others online, it seems there is debate about going off Clexane when you have MTHFR.

So I felt in a bit of a pickle, and have continued taking Clexane as it has no adverse affects on the pregnancy. I will continue until 20 weeks.

My blood test results came back, they were:

  • My Vit B12 and folate at a good healthy level, which is great.
  • My TSH (thyroid) is at 3.8 – My naturopath said "a little higher than we would like it – in pregnancy it should ideally be below 2.0. At the level it is now, your thyroid appears to be functioning on the low side of normal."
    She recommend that I talk to my GP/midwife/obstetrician about it and see if they feel it  important to give a low dose of thyroxine. Otherwise, she recommend taking an extra 100mcg of iodine.
    I spoke to my obstetrician who said the TSH was in the normal range and that hCG are directly tied to the thyroid. So she wasn't worried.
    My naturopath then said, "Holistic therapists do look at  thyroid results differently to most doctors. But if she and you are happy with the results that is fine – I would however suggest you increase your iodine levels to ensure you are having a total of 200- 250mcg per day."
  • Homocysteine - 5.2 (The optimal range is 5-7.) My naturopath says this  means I am currently methylating well and hopefully it means less risk to the pregnancy. This makes it a bit easier to make the decision to go off Clexane at 20 weeks. She said if I still wanted a natural blood thinning alternative (without the side effects), she recommends Nattokinase. See http://www.seekinghealth.com/nattokinase-supplement-flow-fx.html


I had heard that folate levels can sometimes appear normal with MTHFR but not be, so I asked my naturopath about that as well. She said, "Yes, it is true that the folate level is not really indicative of the true levels of red cell folate – however, if they come back really high, that sometimes shows you are not absorbing the folate – so at least this is not happening. You could always ask for a red cell folate test next time instead of the usual test that they do." 
She said "it is probably best to take the clexane till 20 weeks. We can also check your homocysteine level at this point to see if all is well before you go off blood thinners." 

So there we have it. I'm still taking Clexane, though I really hate it, so have dropped back to taking it once every 2 days. 

It's really hard with all the conflicting information and lack of knowledge doctors have. Maybe this might help someone out there? 

Friday 10 July 2015

My whole family has MTHFR

Since we've been on this MTHFR discovery, my whole family has also been tested for it, and they are ALL positive. Every single member of my direct family has homozygous C677, and my husband has compound heterozygous C677T and A1298C.

My husbands nephew has autism, and his uncle has Parkinson's, but they have not been tested.

My sister has had one miscarriage and one live birth. Her successful pregnancy was before she knew she had MTHFR, interestingly, she said she felt sick when taking multivitamins with folic acid in, so she didn't take them. For some strange reason, at the time of the pregnancy, she had started drinking smoothies with kale in them. I wonder if that is why it was a success? She also has her own vegetable garden and was eating vegetables from it.

Both my parents have started taking 5-methylfolate, and there have been some interesting developments. Most significant being my mother's Pompholyx which is a common type of eczema  affecting the hands. She's been in agony with it for years, and previously found nothing that can fix it. On taking the methylfolate it's gone away completely and she's over the moon. She also has lost the pain that was in her joints, and feels she's loosing weight. 

Interestingly, the methylfolate has caused my father gout. It's directly related, the more folate he takes the worse the gout gets. When he stops taking folate the gout goes away. We're not really sure what's happening. 

We are trying to get the others to take the folate, but they aren't really taking it seriously. 

Anyway, thought you might find some of that interesting. 

Thursday 9 July 2015

Recurrent Miscarriage - Coping Strategies

I thought I should write something on my personal, miscarriage-coping strategies and techniques. Maybe they're not for everyone, but perhaps there's someone out there who might gain strength from another person's perspective?

There have been so many times on our journey where I felt like falling in a heap, giving up, and allowing depression to set in. Perhaps that would happen now if this pregnancy were to fail. Let's not consider that!

But, in the past, I knew if I gave in to depression things wouldn't end well. I'd probably have ended up with no husband AND no family.

So I fought, and focused on staying focused.

The past five years have not been happy ones, but I have managed to hold it together and keep things in perspective. Right or wrong, these have been some of my coping strategies:


  • Firstly, I told myself it's ok to not be ok. I accepted the lull point in my life, and while aware of the negative feelings, I tried to always think positive. 
  • Acutely aware of my body clock, I knew there was a limited window of opportunity to realize our dreams, so I set about problem solving via doctors and specialists, telling my self 'no time for emotion, only time for thinking'. (Of course the emotion was there, but I just couldn't let it take over). 
  • The path I was taking was different to the rest of my social group, who I'd always been close to. This made me feel isolated. The worst of everything for me. Not being part of their 'play group' or 'birthday party click' was upsetting. So I mentally detached. Worrying about feeling isolated, rejected, and lonely was something I figured I should do when I was past the age of having children. I needed all my energy to remain focused in problem solving, and working out what was wrong with me.
  • When feelings of depression set in, I fought them off. I tried not to cry, or think bad thoughts. I knew if I let them in, they'd grow, and multiply, and perhaps get out of control. There wasn't time for that. 
  • When pregnant, I didn't ever associate it with a child. I thought of it more as a medical condition that I needed to get right. 
  • When I miscarried, of course I felt sad, but I also thought it fate. What is meant to be, will be. And at the end of the day, 25% of all miscarriages fail. The miscarriage was probably for a good reason. Again, I never associated it to a baby.  
  • I accepted with fertility there are some things you can control, and some things you can't control. I let go of the things I couldn't control, and allowed them to be. Miscarriage is something you can't control. Doctors, medication, diet, exercise are things you can control. 
  • Time is something you also can't control. Whilst under immense time pressure, you can't influence how long this will take. So focus, but don't try controlling or being impatient with time, it's out of your hands. Take one day at a time. If and when things fail, start again.
  • Doctors are people, and often people get things wrong. So I listened carefully to everything doctors said, but always researched the internet after consulting them. I made sure I saw a wide range of doctors, and got lots of second opinions and points of view. I took responsibility of my own medical diagnoses, and made sure I understood everything that was happening to me. I didn't want to be in a position where, at the age of 50, I felt resent towards a particular doctor for telling me the wrong thing. I do, however, regret not seeing a naturopath sooner. 
  • I realized my husband coped differently, and also needed support. We openly discussed the different ways we were coping. Often he wasn't there for me in the way I wanted him to be, I guess I just had to learn to be emotionally tough, and to cope by myself. Trust me, it was s***, but I just kept reminding myself it was temporary. People cope differently. Men are a different species all together... But they mean well, I think. 
  • I didn't worry about spending money. I compared having a family to having a house, and asked my self what I'd prefer... Every time it was the family. Just because everyone else doesn't spend money on having a family doesn't mean I shouldn't, besides, what's money if you have no one to spend it on? Letting go of worrying about money is a great feeling, it gives you energy for other things. 
  • When I had to have operations and medical procedures I'd tell myself I how lucky I was not to have cancer. Having your health is an amazing thing. I'd hate to have to go through all those procedures then still be sick at the end. 
  • Sometimes I thought being concerned over having miscarriages was a bit of a first world problem. There is so much pain and suffering in other countries, we really are lucky to be born where we were. 
  • If for some reason we didn't end up being successful, was it the end of the world? Not really. Maybe it would be destiny for my genes not to breed on. 
  • I'd never thought of my miscarriages as a loss, just that I hadn't gained. 
  • And there was always adoption to fall back onto.
  • I just needed to find what path in life was right for me. Maybe it was going to be different to others? But while I was of child bearing age I'd give it my best. One thing for sure was not going to happen, and that's for me to regret in later life that I didn't try harder. 

I think that no matter how bad you are feeling, and how awful the situation is in reality, it's important to try and think positive. The more you tell your self positive things, and the more positive light you look at it in, the better you'll be able to cope.

Hopefully some of these thoughts and feelings might help others.

Sunday 5 July 2015

13 weeks - still alive and wriggling

Another positive scan today. It's growing so much, doesn't look like there's much room for it to get any bigger.



Very happy.

Next scan is at 15 weeks. Long wait.

Wednesday 1 July 2015

Understanding your genotype for MTHFR

Recently I discovered you can be homozygous for both 677 and 1298.

Apparently, you can be any one of these possible, common, combinations:

  • Normal/Normal for both 677 and 1298
  • Heterozygous 1298 / Normal 677 (i.e. one parent passed down a single 1298 mutation)
  • Homozygous 1298 / Normal 677 (i.e. both parents passed down the 1298 mutation)
  • Heterozygous 677 / Normal 1298 (i.e. one parent passed down a single 677 mutation)
  • Homozygous 677 / Normal 1298 (i.e. both parents passed down the 677 mutation)
  • Heterozygous 677 / Homozygous 1298 (one parent passed down the 677 mutation; both passed down the 1298 mutation)
  • Homozygous 677 / Heterozygous 1298 (both parents passed down the 677 mutation; one passed down the 1298 mutation)
  • Heterozygous 677 / Heterozygous 1298 (Compound Heterozygous: one parent passed 677; one passed 1298 mutation)
  • Homozygous 677 / Homozygous 1298 (Compound Homozygous, meaning you have two 677, two 1298 mutation)


Deciphering  genotype for MTHFR C677T

CC = a normal C677T MTHFR gene
CT = a heterozygous mutation which is one mutation of C677T
TT = a homozygous mutation which is two mutations of C677T

Deciphering  genotype for MTHFR A1298C

AA = a normal A1298C MTHFR gene
AC = a heterozygous mutation which is one mutation of A1298C
CC = a homozgyous mutation which is two mutations of A1298C

MTHFR 677CT + MTHFR 1298AC = a compound heterozygous mutation which is one mutation from two different parts of the gene.

MTHFR 677TT + MTHFR 1298CC = a compound homozygous mutation which is two mutations from two different parts of the gene.