MTHFR Genetic Mutation

My Recent Visit to the Naturopath

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MTHFR Genetic MutationSince the doctor I was seeing left the practice (I guess she left the practice… her name is still on the door and on the website), I needed to have some blood tests done and so I made an appointment with the partner, a man. I don't have a preference for a man or woman doctor, I've had bad experiences with both.

I wanted to have some tests run: MTHFR genetic mutation, I wanted to see if my reverse T3 went up or down. Dr. Kruse indicates doing the leptin reset can help to fix the thyroid and recommends staying under 25 grams carbohydrates on the first eight weeks of the leptin reset if you are 30 pounds overweight – I had been told going this low on carbs would make my reverse T3 higher so I wanted to see if it went up or down. I wanted to see where my Vitamin D levels were at. I wanted to see about my aldosterone and renin, and my sodium and potassium levels, and my iron levels.

I've been putting off starting on Cytomel (T3) which according to some sources is the only way to drive down reverse T3 levels and clear my receptors. The high reverse T3 levels can be the reason for my hypothyroid symptoms. All of the tests I mentioned need to be in a certain place in order to begin the T3 protocol.

I'm just a little freaked out about going on T3, but I thought I would feel better after doing the leptin reset. I DO feel better, but maybe I can't feel better until I do something about my high reverse T3 by doing the T3 only protocol.

At any rate, I was quite apprehensive about the visit because I had spoken with him on the phone while my previous doctor was on vacation and this guy doesn't think my thyroid is involved at all because 1) I don't have cold hands and feet and 2) my hair isn't falling out. He thinks it's only my adrenals. Actually when he saw and felt the swelling on the left side of my thyroid on my throat at the end of our visit he acquiesced that my thyroid could be involved.

Let me address both of those two hypothyroid symptoms that he listed. I listened to a podcast a few months ago with a doctor in Arizona who specializes in thyroid conditions. He says since our climate is warm we don't tend to have the cold hands/cold feet symptom. If my house is really cold like it has been this winter, my hands and feet are freezing cold. But not generally. I have more recently learned that usually when one's hair is falling out and they are hypothyroid it is because iron levels are low. My iron levels are where they should be, and I believe this is why my hair isn't falling out in spite of having hypothyroid symptoms. These aren't the only two symptoms a person can have for thyroid problems. Click here to review a list of hypothyroid symptoms addressed with proper thyroid treatment at  Stop the Thyroid Madness.

Mostly I decided to make the appointment because he agreed to order all the tests I asked for without really questioning my intent for the tests. I figured it would be cheaper to pay him $75 than to pay for the tests out of pocket. All I really wanted to do was to make sure I'm good to go with the T3, even though I am still on the fence about using it. AND, he may not have let me have my test results without an appointment. Doctors often hold our lab reports hostage until we see them in person.

At the appointment he pointed out some things on my lab results, and said he had not questioned why I wanted the tests done, but he said now he was going to question me. Okay, that's fair. So I answered his questions, and that was cool, everything was fine.

So I have the MTHFR genetic mutation C677T, two copies. I'm not really sure what this means, but my friend Patty answered my question in the comments at her blog post here. Dr. A was telling me how I need a certain kind of Vitamin B and how 50% of the population has this genetic mutation and so he figures why not just give everyone who walks in the door the “right” kind of Vitamin B? That sounded like it made good sense and I felt like I could trust that he knew what he was talking about.

We talked about the reverse T3 ratio, but he didn't seem to know anything about it. I calculated the ratio at Stop the Thyroid Madness on my phone and my ratio is now 11. It was previously 13.3 in October and 12.5 in November. So the farther from 20 you get, the worse you feel, as far as I understand it.

Dr. A assumed I was on T3 already, since his partner had given me a prescription, but I explained to him that 6.25mcg once a day for thirty days wasn't going to do anything to drive down the reverse T3 so I hadn't even bothered to start. He was curious as to why the prescription was for 6.25mcg because he said the normal dosage was 5mcg. I explained to him that it's MUCH MORE economical to take a 25mcg tablet and cut it into fourths so that makes the dose 6.25mcg. He understood and that was fine.

He said he would prescribe the T3 but he was still certain it's not my thyroid but my adrenals. He asked me to tell him my symptoms for why I think it's my thyroid and he said not having energy was only adrenals. Not having enough stamina is adrenals. Okay, I tried to explain to him that it could be both, and I believe I've had thyroid problems for about twenty years.

This was all a comfortable conversation, and he said he would like for me to try a regimen of Vitamin B and Siberian Ginseng. He told me he won't ever say he knows everything, and he would never push me to do anything, and he would be willing to do the T3 but he wanted to know if I would give it a month trying his way. So I told him I've been waiting this long, what's another month?

He told me he's had a lot of clients lately that are doing great on this regimen and he mentioned Vitamin B shots, and that he would teach me how to do the shots. But then he stopped mid sentence and said I could only do the B12 shots since they are the only one that is active. He said I would need to take the pills since I have the MTHFR mutation.

It all sounded great. He said to check back in three weeks and let him know how I'm doing.

I went ahead and bought the Siberian Ginseng which cost $42, the B12 nuggets were $24.90 and the two bottles of B Vitamins were $37.00.

I told my husband, who drove me to the visit and stayed out in the car waiting for me, that I think I like this guy a lot better than his partner and it sounded like he was really up on this stuff.

I talked to one of my friends who knows about this stuff and she said maybe my doctor was onto something, and she agreed with me, I've waited this long, what's another month? Also, I asked him about the swelling on the left side of my throat where my thyroid is located and he has me scheduled for an ultrasound to see what the swelling is about.

I actually was looking forward to getting up the next morning, thinking FINALLY FINALLY, I've got the right B Vitamins and it makes all kinds of sense if I have this genetic mutation and my body doesn't process regular B Vitamins that I am going to be tired and not have any energy. In the comments at my post about MTHFR and Down Syndrome, Sterling Hill wrote this. I was so glad to have the right B vitamins, no more methyl jams!

It is great you have found the root cause. And yes to avoiding foods fortified with synthetic b vitamins. They can cause a methyl jam and you need your active b’s to help in the production of glutathione. Glutathione removes toxins and metals from the body. People with MTHFR have trouble maintaining adequate glutathione levels due to their active b deficiency. It is wise to try to produce your own glutathione with nutrition and the proper supplementation. I have found that taking oral glutathione can actually put us in a methyl trap. Some people with this enzyme deficiency do have to have IV glutathione. It is good to know your mutations and if you are homozygous, heterozygous or compound heterozygous. I have a website I have just started. MTHFRsupport.com. In the next few months, I will be adding a list of md’s, nd’s and nutritionists that know about MTHFR and how to treat it. I also have a facebook page called mthfr support. I do have links on my website to many lectures on the subject of methylation and MTHFR. And Dr. Ben Lynch at MTHFR.net is great. He is still learning and helping many people who couldn’t find help locally.

I got up on Friday morning, looked over the directions which said to take 6 tablets 3x daily for two weeks. I thought I had the directions right, but that seemed like a lot – 18 pills in one day? When the bottle says 3 pills a day? I decided to take six and then when the office opened up I called to confirm and that was correct. 18 a day. I dutifully took 6 more tablets at noon. I'm a little excited, wondering if this is going to work and when am I going to start feeling more energy. I'm wondering maybe the reason why I've had bursts of energy over the years is somehow I got the right B Vitamins that day, somehow, you know maybe through the food I ate or something.

I thought it was extremely interesting that my urine never turned bright yellow. I'm thinking this must mean that my body is using all the  B Vitamins instead of peeing them out! That must be what's happening! This is what I get for thinking. Haha.

Later on that day, my friend Patty visited my blog and checked on the B vitamins and discovered that they actually contained the wrong form of folate. Like, THE WORST wrong form to take!! It just so happens that this product includes the right B vitamins EXCEPT except for the folate, and that is in the wrong form.

Boy, did I ever get annoyed and aggravated. This makes the third time that I've walked out of that office with products that I can't use.

I asked on the Adrenals group that I'm on if I could take the Siberian Ginseng and they explained that it won't do anything since my adrenals are suppressed right now, there is nothing to treat. Agh. Another $42 wasted.

The first time I went into the office the doctor sold me DHEA in 25 mg tablets, which I learned after I got home that DHEA lowers cortisol and 25mg is a big dose for a large man. Nice. Thanks. Money wasted. She also sold me a tincture to help me sleep with a bunch of herbs which after researching I learned lower and raise cortisol all at the same time, so I couldn't use that product. More money wasted. The 2nd visit she sold me  bottle of Thorne Research Thyrocsin. Okay, this contains iodine and since I have thyroid antibodies for Hashimoto's Disease I shouldn't be taking iodine because it could cause a flare up of the antibodies. Also, this product contains Ashwaganda which is an adrenal adaptogen which will force my adrenals to work harder, and is an herb used for healthy adrenals that are just a little tired. Mine are suppressed so Ashwaganda won't help me. Unfortunately, the doctor's office has a no refund no returns policy. I am just so annoyed about wasting my money.

The visit last week cost me $259.00. Money that I don't have, so I had to put it on a credit card. I guess I should just be thankful that I have a credit card to put it on. $150 of that was the doctor visit. Remember the $75 I thought I would be spending to get my labs? I assumed we would have a half an hour visit. Instead it was a one hour visit. I don't know how that happened. I mean, I know I was in there an hour talking, but from now on I will turn on the timer on my cell phone.

I am sure he is unaware that the vitamins he gave me are the wrong kind. I have asked a question at Dr. Ben Lynch's forums so that I can share the answer with Dr. A to let him know that this product contains the wrong form of folate.

I suspect this is why his Vitamin B regime doesn't work for everyone. That would probably be the “50%” of the population walking through the door with MTHFR!

Before Patty alerted me to the fact that I had the wrong medication in hand, I was feeling pretty optimistic about this doctor. But this is so very disappointing. I should be refunded for this product, because he should know that it is the wrong folate. I am definitely going to write a letter – not an email – but a real letter and mail it, along with some information on why all the experts agree that a person with MTHFR needs to be taking methyl folate, not calcium folinate. Especially since I have two copies. This makes it even more critically necessary for me to take the right kind. I hope they will refund my money for this product at least.

I have also decided that I am going to let him know that I will no longer be buying any products from his office. I would like to support the office by buying product there, but if I cannot use the product, then I may as well just make a donation. That would make me feel better than to feel like I'm being ripped off. I mean, it's my own fault for buying the product before checking out it.

Also, by the way, my reverse T3 went from 33.1 to 30.5. So it did not go up.

I stopped taking the Vitamin B that Dr. A sold me. I am now going to order the correct B vitamins from Amazon, maybe do like Patty says and just start slow with one at a time. My ferritin levels are very high, indicating inflammation so I am also going to be ordering krill oil, which is supposed to help. Also, I am probably going to order silymarin which is supposed to help with liver detox, which can lower reverse T3 levels. Here is some information from Stop the Thyroid Madness about the use of silymarin to lower reverse T3 levels:

CAN LIVER CLEANSES/SUPPORTS HELP IMPROVE YOUR RT3 RATIO??

Because of low iron or adrenal dysfunction, many thyroid patients have found themselves with high levels of Reverse T3…or more common, a poor RT3 ratio. And too much RT3 can mean the thyroid hormone T3 won’t adequately work in your cells, and you can feel miserable. The solution for most has been to switch to T3-only, but that can have a host of difficulties. It’s not easy to dose with T3 alone.

Recently, though, patients are discovering an alternative way to lower one’s excess RT3: the use of a good liver cleanse/support product, and most especially those with the herb called Milk Thistle. It’s an herb which, for hundreds of years, has been used as a liver tonic. In supplements, it’s the milk thistle seeds which are used because they contain silymarin–the powerful part of the herb which does the trick. And doses in the 400 mg’s of milk thistle extract supplements seem to be doing the trick, say patients who are reporting on it, taking it twice a day at 200 and 200 minimum. Some studies state you can go higher, if needed.

 

 

 

 

 

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15 thoughts on “My Recent Visit to the Naturopath

  1. Starlene,

    I always purchase my supplements from i-herb.com if they have what I need. Don’t feel like you aren’t supporting the doctor’s office by buying your supplements there. I quit buying mine at my doctor’s because they charged sometimes double what I could get them for online. That is gouging. And yes, it is nice to be able to research them too.

    I learned something from what you said about low iron causing your hair to fall out. I think my thyroid levels are good right now (I’m Hashi’s too), but my hair is falling out something terrible. So I’m going to have my iron levels checked next chance I get. Thanks!

  2. @Michelle, I’m glad I shared something helpful for you! Thanks for the reference to i-herb.com. I have heard of that company. I have a hard time saying no to people but I am going to have to be strong and just tell them I cannot buy the stuff without researching it. I tend to become braver once I’ve been burned for products I can’t use more than once, this has been three times. You’ll have to let me know how your iron levels are. The Stop the Madness site recommends that you test ferritin, iron serum, % saturation and TIBC. See this page for more information and they help you figure out what is “optimal” not just “within the range”. http://www.stopthethyroidmadness.com/ferritin/ Best, Starlene

  3. @Starlene,
    Have you read the stuff about selenium being necessary for the thyroid to use iodine? I’m not convinced that iodine is so dangerous for people with auto immune thyroid disease. The theory that it is a low selenium issue just makes so much sense to me. Do you get selenium? Brazil nuts are a great source. Most American soil is severely depleted in selenium, esp in the midwest where I live.
    I think Chris Kresser has stuff about selenium and iodine and thyroid on his website or in a pod cast.

  4. @PattyLA, I have read about that. So much to learn!! I will get some Brazil nuts to eat. I thought I had heard we should eat one a day. Or should I eat more to start? I will look for the information at Chris Kresser’s, too. Thank you for all your help!

  5. I will crave brazil nuts and eat like 10 at a sitting for a few days in a row and then be done with them for a while. If you are low selenium some say to take up to 400mg a day. That would be approx 4 nuts a day. Others say to limit it to 1-200mg a day so 1-2 nuts. I say listen to your body. You just might discover that they are a craving once your body gets a taste for them.

  6. @Patty, I have taken iodine twice now for several months each time all while taking plenty of selenium and other specific supportive materials. Both times I have had a very bad response and I don’t think I will ever try taking the iodine again.

  7. I have literally been working on this comment for an hour. I have written & re-written it a dozen times. What I want to say to you is thank you. Thank you for allowing me to tag along on your journey, and your commenter’s journeys. So much of what you are going through I am going through. You are so smart & informed that it’s such a pleasure to be here.

  8. @Terri Jo, wow, thank you for such a kind and caring comment. I tell you some days I don’t feel so smart because this is such a hard puzzle to figure out! So many variables and so many things that could be or need to be addressed in order to move forward. I am honored that you are reading about my journey and I hope you figure out all your puzzle pieces as well. Warm regards, Starlene

  9. You are welcome. It’s a hard road to go down alone. This posting hit home because the doctors in my area live in the dark ages. My primary care doctor will do any tests that I ask but I have to ask. And then I have to find out what the tests mean because she is so fricken’ lazy. I know that Life Extension Foundation has tests you can order, and during certain times of the year, with membership, the prices are reduced. The bonus is that when you receive the tests you can call them and they will go over them with you. The negative is that it’s money out of the pocket; no insurance. I am very limited on the $$$. (working to change my vibes with that but that’s another story, another post).
    I have gone to over a dozen different doctors here, each time armed with info & studies, etc. But something happens to me when I’m with them. As soon as I realize they are not going to be on my side (they all get that look on their face when I start with questions and bring out all my papers) my head starts to spin & I just want to cry. Everything they say from that point is just like Charlie Brown’s teacher. Blah, Blah, Blah.

    As you thought you had found a good naturopath, I thought I found a good gyno that was hep on bio-identical hormones, but he turned out to be an allopathic disguised as a D.O. I did the same thing as you did. I got in the car where my husband was waiting & said I thought I finally found a good one. But it turned out that he does no testing for hormones, just go by symptoms. So ridiculous because how do you know where you are going if you don’t know where you are starting. Dr. Jonathan Wright (Tahoma Clinic) recommends a 24-hr urine test for hormones but no one here has ever heard of it. And insurance is iffy for paying for it even if it was ordered. Don’t even think Lab Corp has it. Aagh. At times I want to rip my hair out but it’s been falling out for so long that I hardly have any left!!!

    I’ve been on Janie’s thyroid site & thanks to her I have been getting my natural thyroid from Canada (ERFA) at a Canadian pharmacy Universal Drugstore.(since the Armour thyroid reformulation a couple of years ago). But I just don’t understand some of the information regarding t3/t4, etc.
    I have fibromyalgia & any type of stress just shuts me down. I also think it has affected my brain power as well. (probably the pain meds).

    Armed with information that’s available on the internet I still have to be the coordinator, educator, and advocate for my healing and it plum wears me out. Not saying that we shouldn’t take charge of our health, etc., but it’s nice to have someone along the way to help, support & guide.

    I have been using iherb for YEARS since moving away from Los Angeles area. They have great customer service & good prices with added discounts. Have a look see.

  10. Oh god starlene I just got my results back last week for MTHFR and I’m homozygous C677T! Now I feel I have some sort of answer to this long battle of health problems. It is somewhat of a relief isn’t it? Now just to be able to tolerate methylfolate!

  11. Natalia, I am SO glad to hear this! I am glad you got tested, and this really helps to understand what has been going on! Will you encourage your parents to be tested? I am very curious to know what my parents status is as I also have homozygous C677T. I have a sister 2 years younger than me with heterozygous (only one copy) C677T so this tells me – from what I learned from Dr. Lynch yesterday – that my mother and father have at least one copy each, but one of them may have two copies we would only know through testing. I’d hazard to guess my dad may have two copies as he has been mentally ill for most of his life. Did you get to listen to Dr. Lynch yesterday? Here is a quote in his parting words of wisdom: “You need to understand when you get a diagnosis of having one or two copies of MTHFR, not to feel down and out but to feel actually privileged that you have been diagnosed and found out that you do have this mutation so you can do something about it, and be proactive and then to seek out other things such as the GAPS Diet and implement that in your lifestyle and seek out environmental medicine and environmental health…” Also I learned yesterday that Dr. Lynch considers and I guess the current research also considers homozygous C677T to be the worst combination. But thankfully we can do something about it! Thanks for letting me know about your status. I am glad you found out and anxious to see how you can tweak things to heal. I see a bright future ahead for you. 🙂 Hugs, Starlene

  12. I can’t tell you what a relief it is. I didn’t feel burdened when I found out the diagnosis, I was more like ‘YES! An answer!’ but I reacted badly to methyl folate and methyl b12 (detox reaction?), but they were in the same capsule, so I’m going to go as per dr. Lynch’s recommendations and start with methyl b12 and go from there.
    It turns out on both my uncle and Aunty on my mums side have been tested already for it because of thrombosis, and they tested positive for one copy each. Mum said in hope- ‘so what if the results come back and I’m negative for it?’ and I said ‘no mum, it’s a fact, you have at least one copy because you gave it to me.’ she wasn’t too happy about that! Her dad had a triple bypass at 50 for heart disease and died at 78 after several mini strokes and resulting complications.
    I was interested about how Lynch said people with our mutation particularly have nervous issues because our nerves cannot myelinated properly. This resonated with me as I’ve had depression and anxiety since I hit puberty. My dad has an extremely moody personality as well as being an alcoholic. My sister has full body eczema and has bipolar tendencies (never seeked a diagnosis). So interesting and i will encourage all my family to get tested especially if I improve after treatment!

  13. Wow, interesting that some of your family have been tested. I wonder if they know how to treat themselves? My head has been reeling slightly since the interview just processing what he said. I’ve listened a second time and need to listen again to absorb more. I really learned a lot. I am hoping you see great improvements, Natalia. I want to get my husband tested – he seems very healthy but conditions of MTHFR abound in his family plus he has suffered from addictions to both cigarettes and alcohol in the past. He’s been sober for about 15 years now and 6 years off cigarettes but he is definitely addicted to sugar…

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