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? 

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. 

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.

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.

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.

12 week scan a success!

Yeah! Yeah! Yeah! Our 12 week scan was successful. Everything looks normal, just how it should be. The lady said the fold measurement at the back of the neck was the smallest measurement possible, which is good.

So relieved. So happy.

When to stop Clexane?

So both my IVF doctor and my gynecologist have told me to stop taking Clexane at 12 weeks, which is what I am today. They told me the Clexane was to help with the implantation of the placenta and that taking baby aspirin would help thin my blood if that was an issue.

I'm conscious that both these doctors don't really know about MTHFR, and don't 100% subscribe to it. So today, on a phone consultation, I asked my naturopath what her opinion of going off Clexane was. She hesitated, then told me I should check my homocysteine levels. She said if they are between 5-7, that's good, and going off Clexane is ok. Otherwise I should stay on it.

To be honest, I trust her over the doctors.

So tomorrow I'm getting my homocysteine levels checked, also my B12/red folate, and thyroid THS levels tested. The naturopath said I need to fast before taking the blood, so before breakfast she said.

Big scan tomorrow... Will keep you posted.

Hurry up Tuesday

Tick, tick, tick... Feels like forever we have to wait.

On Tuesday we have our big 12 week scan. At it we find out if the baby has all its internal organs, and if they are working properly. They can tell if the heart has formed properly, if the bowels are working properly, if it is swallowing. They look closely at the nose, and the width of a tube at the back of it's back, this is to see the likely hood of Downes Syndrome, which we already know it's not likely to have.

I've only made it to the 12 week scan once before. Shame, everything was perfect then. But it only lived to 15 weeks (discovered at 17). Strangely, I do consider that pregnancy a success because it had a valid reason for dying. I had contracted toxoplasmosis!

Frustrating, cause not only do most people not know what toxoplasmosis is, most don't know if they're immune, and don't know how to prevent. I had studied up very closely on the topic, and knew I wasn't immune. Everything in my power was done not to contract, yet I still got it. What are the chances? Bad luck.

After speaking with my naturopath I wonder if everything happens for the best. She told me that if the child had lived it could have been effected by the lack of folate it had been getting, causing ADD, or learning difficulties, that type of thing. She said that all the vitamins I'm taking now will have such a positive effect on this pregnancy.

So now I am immune to toxoplasmosis, I'm on methylfolate, taking the right vitamins, organic. Will that be enough?

Fingers crossed.

I'll report in on Tuesday.

Wonderful news - low risk for syndromes

Yeah!!!!!!! Feeling so happy, today we had our 11 week scan - all still on track, heart ticking and baby is right size. Results from the syndrome test hadn't come through, but tonight at about 6.45pm our doctor called to tell us that she got them in the afternoon and everything is 'low risk'. Yeah!

Apparently the test is 99/98% accurate, so very happy.

She also told us the sex of the baby, but we're keeping it a secret. Don't want the world to start thinking of it too much as a living human yet... Not until it really is.

So hope this works.

Community for MTHFR women suffering miscarriage

If you want to discover a whole community of women going through the same miscarriage scenario because of MTHFR, then follow the link below:

http://community.babycenter.com/groups/a6704685/moms_with_mthfr_mutation

Brilliant summary of MTHFR

This person has written an excellent summary of everything to do with MTHFR.

http://www.dietvsdisease.org/mthfr-mutation-symptoms-and-diet/

Nervous

I'm feeling worried about getting the results of my genetic testing back.

We've been through so much, I'm not sure I can handle any more bad news. I'm worried that our MTHFR (both my husbands and mine) has affected the DNA of our sex genes, and that at conception there was something wrong, as we hadn't been on 5-methylfolate for very long at that stage.

I'm most worried about Downs Syndrome. Not so much about Edwards and Patau. I've had Patau before (reason for one of the miscarriages), what happened then is the fetus size was significantly smaller than it should have been based on our dates. This happened with a number of our other miscarriages we didn't have tested, so I assumed they also had a syndrome. The history of syndromes fits with our MTHFR profile. That's why I'm worried. 

This time our fetus is the right measurements. Because of that I assume it not to have Edwards or Patau, as they are the worst and would either have miscarried by now, or be small. Not sure about Downs, feel I'm kind of high risk, especially at my age (40). I'm thinking it will either have Downs or be normal. 

Please, please, please let it be normal. I'm not sure I can handle any more. Really, I don't think I can. 

If this pregnancy fails, it's time to call it a day. 

Sigh. 

Exhausted thinking about it. Big breath. 

Eating organic - a must for MTHFR

So, as an MTHFR sufferer, our bodies can't get rid of toxins the same way normal peoples bodies can,  so it's really important we don't put toxins into it. If you have MTHFR you should do everything you can to be on an organic diet.

Sigh. What an effort. And man, that's expensive.

Yep. Unfortunately we're in the high risk category, so, if we want to live healthy lives, it's something we have do it.

I'm 100% organic at the moment, not sure if that's going to be sustainable, but I've looked at ways of incorporating it into my life with the least effort. To start with I had an hour long chat with a very knowledgeable lady at our local organic shop. She told me that the best foods to buy organic are vegetables, vegetables and fruit with lots of juice/liquid in them, like cucumbers and apples. She said the more liquid equals more pesticides, and pesticides are the thing we want to avoid. So if you're on a budget, just focus on fruit and veges.

I discovered a local organic delivery service who delivers fruit and veges to the door, so I signed up. I also resigned my self to the fact I'm going to spend the rest of my life eating quality food, not quantity. The food is going to cost more, but I'm going to eat less. I'm going to do a major shop at the organic shop once every 2 weeks, and use the local supermarket for everything else.

The Dirty Dozen (actually, the dirty 22) & the Clean Fifteen

Here is a list of the foods to focus on in terms of organic. I was shocked to find that apples have 40+ pesticides sprayed onto them. I was also surprised to find that potatoes are in the dirty dozen:
http://www.goodhousekeeping.com/food-recipes/healthy/news/g168/dirty-dozen-foods/

10 weeks today

Yeah! Just had a scan with the specialist, and everything is perfect. The little baby was wriggling, it was the perfect measurement and had the perfect heartbeat.

What a relief. I was worried because I've stopped going to the bathroom so much, was going x3 times in the night, now only at 6am. Dr said this was a good sign because it means the placenta is taking over.

We have the next thing to worry about now, that is a Percept cfDNA blood test that I had taken. It can tell us if the baby has Downs, Edwards, Patau, Turners, Klinefelter syndromes, and it can also determine the sex. We'll know the results in about a week. Hope it's ok. Our Dr told us that they are v close to being able to determine the baby's entire DNA through this test. Amazing.

No negative pregnancy symptoms - other than tiredness

The most surprisingly good thing about this pregnancy is that, in contrast to all other pregnancies, there's been no negative symptoms other than tiredness.

I haven't had:

• Morning sickness
• Mood swings
• Constipation
• Sore breasts
• Headaches 
• And I haven't been needing to go to the bathroom as often as in the past

It's strange. My naturopath told me it's because my body is able to clear toxins, so there's no build up of hormones etc. Thank you 5-methylfolate.  

Not surprisingly, due to lack of symptoms, I worry the baby has miscarried every week and am always shocked to see it's little heart beating. Right now I'm feeling that way, worried. 

Please dear God let it still be alive on Monday.

P.S. Did I mention that I've been loosing weight? Yes. Despite the pregnancy, I've lost 5kg since starting on 5-methylfolate, AND, some of that is from my stomach which is a place I've never lost weight from - not in my life, not even in the skinny-university-days. 

Conditions associated with MTHFR

Some conditions that may be associated with MTHFR gene mutations

• Autism
• Addictions: smoking, drugs, alcohol
• Down’s syndrome
• Frequent miscarriages
• Male & female infertility
• Pulmonary embolism and other blood clots
• Depression & anxiety
• Schizophrenia
• Bipolar disorder
• Fibromyalgia
• Chronic Fatigue Syndrome
• Chemical Sensitivity
• Parkinson’s disease
• Irritable Bowel Syndrome  
• Stroke
• Spina bifida
• Migraines
• Hyperhomocysteinemia
• Breast cancer
• Atherosclerosis
• Alzheimer’s
• Multiple Sclerosis
• Myocardial Infarction (Heart Attack)
• Methotrexate Toxicity
• Nitrous Oxide Toxicity

Methylation Overview for Professionals

http://www.drkendalstewart.com/wp-content/uploads/2011/09/Methylation-Overview-for-Professionals-10.11.pdf

BioBalance Liposomal B Complex For Pregnancy

This is the product I believe is behind our success:

See information at:
http://blog.healthpost.co.nz/2014/new-generation-b-complex-best-pregnancy-vitamins/


Where to buy:
http://www.healthpost.co.nz/biobalance-liposomal-b-complex-for-pregnancy-bblbp.html

We've Graduated to the Obstetrician

At last we've graduated from the IVF clinic to the Obstetrician and today we visited her for the first time. It was our 9 week scan, and there's still a healthy heart beat! Yeah!!

Good news continues

8 weeks and 1 day today. Just had a scan and heart is still beating and size is growing perfectly.

Big relief.