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TTC After a Loss 6 Months+
MTHFR
So, I finally got a call from the doctor's office. The nurse called- not my doctor. She said that I tested "positive" for MTHFR. She didn't tell me anything else except that my homocystein level was normal and that my doctor said the only treatment would be the high dose of folic acid (which I have been on since June 2010). So I am on the 4mg and then Neevo DHA. I am so tempted to add a baby aspirin, but he didn't say I should. So, I guess I won't. Did your doc put you on aspirin if you tested positive?
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Re: MTHFR
The term "tested positive" is weird. Did they tell you if you are hetero or homozygous, and which gene the muation was on (A or C?) Because that might effect treatment.
I'm Homozygous MTHFR A1298C. My RE and OB put me on 4 mg FA, 1 Folgard, 1 Baby Aspirin while TTC (to be continued through a pregnancy), and Lovenox injections from ovulation through the whole of a pregnancy.
I did not have elevated homocystine levels; however, my RE said they are only just beginning to understand that MTHFR can play a role in fertility issues, and therefore it made sense to treat it. It's a clotting disorder, at the end of the day, so baby aspirin and Lovenox made sense to her to prevent any clots from interfering with a pregnancy.
No, they didn't tell me anything else. I am really frustrated. They didn't have my results back when I went in for my follow up. He said they would call. Yesterday had been over three weeks and I hadn't heard anything. I called the office to see if the results were back. This is just a regular OB office. There are 7 or 8 doctors that work there. Each doctor has their own nurse. There is a triage nurse that answers general phone questions. I asked for my doctor's nurse by name, since I knew she would know what was going on. They wouldn't transfer me to her. The triage nurse told me she didn't have the results yet. Then she called back and left a voicemail a couple of hours later and said that my doctor was out of the office and they would call today. Then this morning, my doctor's nurse called. This was pretty much the conversation.
nurse: Dr. C got your results. One test came back positive. But, the treatment for that is the high doses of folic acid that you are already on.
me: what was positive?
nurse: the MTHFR, but your homocystein was normal. So the treatment is just the folic acid.
I should have asked more questions, but I really don't think she would have known the anwers. Because it is just a normal OB office and I had to ask for the test. I was hoping my doctor would call and I could get some real answers. He had told me that is some of the tests came back abnormal we may do blood thinners when he ordered the tests. But, he never told me which ones.
I hate that. Hopefully follow up will give you some more specifics. You doctor needs to call you soon and really go over treatment - I think blood thinners make sense.
And if they don't seem inclined to pursue this, it might be time to talk to an RE. They tend to just know more, be more agressive in treating these sorts of things.
I'm sorry, Penny. This all sucks. I wasn't surprised to find out I was a MTHRFvcker, but that didn't make it all that fun to know anyway.
Dx: MFI- 3% morph
IUIs: Gonal-F + Ovidrel + b2b IUI= BFNs
IVF with ICSI= BFP! EDD 11/25/11
3/18- Beta #1 452! 3/20- Beta #2 1,026!! 3/27- First u/s- TWINS!
Our twin boys arrived at 36w5d due to IUGR and a growth discordance
Be kinder than necessary, for everyone you meet is fighting some kind of battle.
Thanks. I figured it would come back positive for some reason. I am so ill. That was all of the answers I am getting from them. I don't even have another appt (sorry, I was rambling in my last post and that wasn't clear). My doctor got the nurse to call and tell me that. I really think he doesn't know what to do with me.
Well, the "good" news about MTHFR is it treatable - FA, cut back on the caffeine, aspirin, maybe Lovenox. I know many of the ladies on PGAL and PAL successfully treated it through TTC and pregnancy.
But yeah, it sounds like it's time for a doctor who's going to not only find answers, but offer solutions. If this is not the doc, there are lots more out there who will give you the care you deserve.
This is my understanding... MTHFR prevents your body from absorbing folic acid and you only treat it with extra folic acid.
You would only take baby aspirin if your results came back with a clotting disorder, like factor v (5), which is what I have. They actually called mine "Heterozygous Factor V Leiden". Maybe I'm wrong, and hopefully someone will correct me if I am!
So my best guess is that you do not need to take baby aspirin... I would call back though and ask to speak to your doctor - not the nurse. I understand that they are busy, but surely they can spend 5 minutes on the phone with you.
Good luck, Penny!
MTHFR is really a clotting disorder (same as Factor V). So it is treated, most often, w/ aspirin and Lovenox in addition to the FA.
Like I said above, I'm on all of it and have been since we triggered.
ETA: I shouldn't say "same as" Factor V, they are very different, I just meant it's often approached the same way.
The obvious issue w/ MTHFR is the FA blockage, of course, so Mocha is totally right about that. But in treating the whole, they seem to have the most success.
And having this defect does put you at a higher risk of clots - I will not be rx hormonal birth control after this pregnancy because of this.
When I heard the results from the RPL panel, my doc said Folgard for MTHFR and 81mg of aspirin for Heterozygous Factor V Leiden... So I did as I was told, but you clearly did more research (or your doctor likes to keep you in the know)!
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I would consider calling and making an appt with a hemotologist, if you can't get any answers from your OB. Blood related issues are their speciality. I don't know anything about MTHFR - I am hetero for factor v leiden, which is stirictly a clotting disorder, not related to folic acid. I also tested + for beta 2 glycoprotein 1, which is an antiphospholipid antibody.
Anyway, the hemotologist I went to was great and I am so glad I went to see her. I am on low dose asprin, 81 mg and I will start lovenox with my stims (for IVF).
I really hope that you can find some more answers soon.
Thank you all. I appreciate all of the info.
Ambrandau....I haven't read about the caffeine. I read about tea decreasing folic acid absorption and I think I read about coffee somehwere. I really cut down on caffeine when I was pregnant. But I drink cofee and diet pepsi when we aren't trying. Maybe I should go ahead and cut back now.
I'm compoud heterozygous (one copy of each mutation) and I'm on 81mg of Aspirin (low dose), Folgard Rx twice a day, and prenatals. When I got pregnant this last time, they put me on Lovenox injections.
I would call back for more info. I almost went to a Hematologist when my last OB wasn't treating me and blew off my MTHFR. But my new OB absolutely wanted to treat me.
Good luck to you. I'm glad you are getting some answers.
GEAUX TIGERS!!!
1st pregnancy: BFP- 6/28/09 - Found out we lost our little girl on 10/9/09 at 19w 4d - D&E- 10/14/09
June 2010, corrective surgery for Septate Uterus and large fibroids
2nd pregnancy: BFP- 10/18/10 - Slow rising, non-doubling HCGs, no heart beat. Non-viable pregnancy, D&C- 11/12/10
Started Metformin 6/30/11, Started Clomid 7/20/11 - Unsuccessful
HSG and Laparoscopic surgery revealed blocked tubes and lots of scar tissue...IVF here we come!!!
Surprise BFP naturally!!! IT'S A BOY!!!
FWIW, of course, but my RE took me off all caffeine (she said I could keep having chocolate, but in moderation), last April. She did not even want me drinking decaf. I went cold turkey on coffee, tea and soda. It was rough, I won't lie, but she felt really strongly about it.
I loved her because she was a "let's DO something" kind of doctor. She was always willing to try something else, in different combinations. I truly believe she was a miracle worker. Everyone deserves to have a doctor like that, and it pisses me off when docs take a low key, wait and see approach to this stuff. Screw that. Let's DO something and find the solution.
I was diagnosed with MTHFR, more specifically, hetero on the C677 gene. My homocysteine levels were fine and they said my main problem was folic acid uptake. I take Neevo and just started taking baby aspirin. I think the homozygous ones have higher incidence of elevated homocysteine levels, which in turn increase chances of clotting.
All the Dr.'s I talked to don't think it has had anything to do with my losses. The RE said I could take baby aspiring because "it wouldn't hurt."
BFP 12/18/2009. HB 1/4/2010. NO HB 1/18/2010. D&C 1/19/2010
April 2011 IUI #1 BFN. High FSH and other issues.
May 2011 Chose to build our family through adoption
September 2011 Actively waiting for a match
11/26/11 Surprise BFP * DD born 7/23/12
DO NOT VACCINATE YOUR BABIES OR ANYONE IN YOUR FAMILY! IF YOU HAVE SILVER AMALGAM FILLINGS GET THEM OUT!
go to www.nwhealthcare.net and read about MTHFR. Watch Dr. Neil Rawlins lecture series on MTHFR.
Go to Dr. Mayer Eisenstein web site and learn how to write vaccination waivers for yourself and your children so they do not have to be vaccinate to attend day care or school!
MTHFR
MethylTetraHydroFolate Reductase Deficiency
Dr. Neil Rawlins
New approach to medical problems from the Human Genome project
Goal of the project was to identify genetic disorders that cause disease and then treat the cause not just the symptoms. MTHFR is the first one to have an FDA approved treatment. There are two common variants that can be tested (677, 1298) but as many as 50+ variants. If both genes are defective the pathway functions on about 10-15% at best.
FDA approved treatments are for
Anxiety, Depression Deplin
Memory Loss Cerefolin
Diabetic neuropathy (nerve Pain) Meta NX
High Risk Pregnancy Neevo, Neevo DHA, Prenate Elite, Thorne
Other symptoms that are treated by this pathway but don have FDA approval
Elevated Homocysteine, fibromyalgia, chronic fatigue, Irritable Bowel, Migraines, Alzheimers, Chronic pain, Bipolar, Schizophrenia, Parkinson?s, as well as prevention of Congenital anomalies, Down?s Syndrome. Without treatment people are more prone to viral infections because the Methylation process is critical in shutting off viral replication as well as retaining heavy metals and other environmental toxins.
Who Benefits?
30 % of the population have both genes defective
40% have one gene defective
100% are exposed to environmental toxins that affect this pathway (BPA)
Effects of low Methylfolate
Low Seritonin, Dopamine, Norepinepherine
Low Glutathione. Needed for toxin removal and Memory
Low Tetrahydrobiopterine. Critical in nerve protection, neurotransmitters
Things that aggravate the genetic disorder
MEASURES THAT IMPROVE SYMPTOMS:
Nutritional protocol for MTHFR
Revised 7/21/2010
The Human Genome project has developed a new approach to medical problems. There are several of the B vitamins that require activation before they are useful to the body. By taking the active forms of theses vitamins you are able to bypass metabolic glitches and compensate for genetic and environmental problems. The MTHFR genetic defect is in between 40-60 % of the population. It is associated with problems such as early heart disease, stroke, Blood Clots, Depression, Anxiety, Irritable Bowel syndrome, Fibromyalgia, Chronic Fatigue, Chronic pain, Migraines as well as heavy metal and other environment toxin retention. This protocol is designed to help treat these problems with nutritional therapy. It is not designed to replace your medications however you may be able to over time decrease the medications that you require to manage these problems. The Supplements should be added one at a time rather than start them all at once.
METHYL FOLATE (Prescription)
Deplin 7.5, 15 mg a day. This is just the Methylfolate and tends to increase energy. Take 7.5 mg at a time. If taking 15 mg take ? in the am and ? at noon. Most widely used.
MetaNX 1-2 tablets/day Methylfolate (B9), Vit B6 (Pyridoxyl 5 Phosphate), Methyl B 12 Methylcobalamin. This works well 6 months to 1 year. In a small percent of the population the Vit B6 builds up and creates a tight band type headache. Great for surgical wound healing
CerefolinNAC. One tablet a day. This is for Methylfolate, Methyl B12 and N-acetyl cysteine that helps form Glutathione. Glutathione is important in memory and clearing Heavy Metals.
Neevo Prenatal, Prenate Elite, Thorne Prenatal These prenatals contain Methylfolate
OVER THE COUNTER OPTIONS
Methylfolate (MTHF). 1mg. also available at Malley?s Pharmacy or Prescription pharmacy age 8-12, 1 tab, age 12+, 2 tabs (7.5 tablets are equivalent to 1 Deplin)
Methyl-Guard. Thorne Pharmacuticals Available at Malley?s Pharmacy, Prescription pharmacy age 0-3, 1 capsule, age 3-5. 2 capsules, age 6-8. 3 capsules. (6 tablets are approx equal to MetaNX)
You may require additional supplementation to support this pathway.
Options for Methyl B12 :
Methyl B-12 5000mcg. Oral dissolving tablets every day (usually 1 but up to 4x/day)
Methyl B12 oral drops Richland Clinic Pharmacy or Biogenesis (called Methyl Protect) on line. This works well for infants and children.
Methyl B-12 (15 or 25mg/ml) 0.1-0.5ml sub-cutaneous injection every 1-3 days
It can lower blood sugars at about 8 hours. In diabetes it seems to work bests daily.
Your urine may be an orange-red about 4-6 hours after the shot. That is your body clearing the excess. I have found that some people that are very ill have not noticed this till several weeks into treatment. The injection has to be compounded, needs a prescription and be refrigerated. Regular compounding pharmacies do not have the special equipment to do this. Some pharmacies that do:
Malley?s Pharmacy 509-943-3030 (local)
Hopewell Pharmacy NJ 800-792-6670.
Moses Lake WA Pharmacy 800-476-6505
Other supplements that seem to help with this particular metabolic pathway include::
N Acetyl Cysteine 600 mg Once a day
This helps make glutathione which clears heavy metals, Seems to help with memory
Full Spectrum Minerals Mineral supplement with Amino Acid Chelate (AAC)
Take one a day. NOW brand and others are available.
Vit B6 (Pyridoxyl 5 Phosphate or P5P), 25 mg This is in Meta NX. Can be added to Deplin
This B vitamin can build up in some people and it causes a headache that feels like a tight band.
Vitamin C 1,000-3000 mg up to 3 times a day
This helps with regenerating glutathione as well as helping to have 2-5 BM/ day
Epsom Salt bath Soak feet or body with ? -1 cup of salts 2/3 times/week
? The magnesium absorbs directly. It helps with improving the mineral balance. It also adds the sulfate that is critical in clearing toxins. It is not well absorbed orally.
DMG-Dimethylglycine. (another option in TMG) 100-250mg/day Start with one a day
This adds methyl groups to the amino acid that your body uses in the methylation.
Zinc 20 -50 mg/ day Especially important in eye sensitivity which is common.
Omega 3 (Flax seed or Fish oil that has mercury removed) 1-2 tablets per day
Some of the fish oil tablets don?t have the mercury removed. Helpful with brain/nerve healing
Vitamin E 400 IU Once a day
Silymarin (milk weed Thistle) 150 mg 1-2 tabs/day. Boosts glutathione
Glutathione SR (Thorne pharmaceuticals). 1-2 tablets/d This may give symptoms as the toxins come out so it may be useful to do on a 3 days on, 4-11 days off. Available at Malley?s Pharmacy
5-9 serving?s of fruits and vegetables are key to getting many of the minor but essential nutrients.
Laboratory evaluation may be useful. This allows testing for the genetic predisposition and looks for toxicity in the B6. It helps identify people who would benefit from long term therapy.
MTHFR (methytetrahydrofolate Reductase) This is an initial test for gene defect.
Homocysteine This seems to be optimal if under 6.3. Do baseline and follow if over 7.5.
HbA1C. This is a estimate of glucose intolerance. If in the 5.5 to 8 range you can have more problems with dosing the Methyl B12 and it should be given every day.
MTHFR tests only two of the common genetic variants. There are as many as 50+ variants to this gene alone. You get one from each parent. Possible combinations of these two are:
Normal/Normal It doesn?t test for the environmental toxicity or the minor defects.
Normal/ 677 More susceptible to environmental damage, depression, addiction
Normal/ 1298 More susceptible to environmental damage, depression, addiction
677/677 This means exposure to Lead, Mercury, and Pesticides may not clear well
1298/1298 This means exposure to Lead, Mercury, and Pesticides may not clear well
677/1298 As noted above this genetic defect has increases in strokes/heart disease/ blood clots. Nutritionally bypassing these defective Genes with the above protocol is very important. It may also be important to take an aspirin daily. All of the defective MTHFR genes are associated with Depression, Irritable Bowel, Fibromyalgia, Migraines and Chronic Fatigue and may make you more susceptible to viral infections especially Mononucleosis. Avoiding environmental toxins like BPA (plastic stuff), Mercury, Lead and by drinking filtered water in a stainless steel or BPA free plastic helps treat with getting better and avoiding future problems.
Changing the course of Autism, The scientific approach for parents and physicians. Bryan Jepson, MD. This book talks about the importance of these supplements.
Magnificent Mind at any Age, by Daniel Amen. An excellent resource on treating the effects of this gene
An old version of my MTHFR presentation was put on a web site by my niece. https://www.renewashoe.com/medical/
Please call me at 314-651-2700 and I can explain everything to you. I do not want you to go through what I went through with my children!