*Updated March 10, 2016*
This week has been my most challenging and difficult since starting this blog. It began with a visit to my doctor who is on top of MTHFR issues. I had many, many vials of blood drawn about three weeks ago and the lab results have just been trickling in. The big discovery of the week was that I have adrenal fatigue. I have been waffling back and forth over whether I had this problem since the beginning of the year when I was having problems sleeping and feeling the classic “wired and tired” during the day. I thought I was better but as it turns out I have low cortisol across the board.
Check out the results of my 24 hour saliva cortisol test:
8 am 0.115 ug/dL (reference range 0.025 – 0.600)
4 pm 0.044 ug/dL (reference range 0.010 – 0.200)
11 pm <0.010 ug/dL (reference range <0.010 – 0.090)
My serum cortisol was 8.1 ug/dL at around 10.30 am.
Now, like MTHFR, adrenal fatigue is one of those conditions that are kind of out there in the ether. It’s not typically accepted by mainstream medicine. There are no standard protocols or treatments. My endocrinologist, the one who ordered the test, dismissed these numbers as “normal” and turned her back on me. She is soon to be fired as she also thought my latest thyroid lab results were “fine” and sent me on my way (my free T3 and free T4 levels were lower than optimal). I just need to have my appointment with the next endocrinology candidate, who can’t see me until the end of October. “Fine” has become my alarm bell word for doctors who don’t really know what they are talking about and are eager to get out of the room and on to their next patient.
My *good* doctor, however, said I was spot on in my own diagnosis of low cortisol. Of course, most of us with adrenal fatigue have to kind of feel our way around in the dark. We might bump into other sufferers with advice for us but trusting that advice can be ill-advised. Why? Because there are different types of adrenal fatigue. People with high cortisol give advice to people with low cortisol and vice-versa. I’ve always taken my information about adrenal fatigue from Dr. Michael Lam’s website and he is very clear on the difference in treatment protocols for those with high cortisol vs. low cortisol. Whether there are actually stages of adrenal fatigue may be debatable, but this fact seems quite clear.
My doctor wants me to wait on ATP and DHEA test results before she advises me on what to take. In the meantime I’ve been scouring the Internet and talking to other people in the know, which is what I do when I’m anxious to solve my health problems. My sad realization for this week is that most of the health problems that I am afflicted with are strange ones that not many people know anything about. It is alienating on many levels because 1) your family and friends don’t know what the hell you are talking about and think you are making things up or being a hypochondriac; 2) you are bound to know more than most of your regular doctors about your problems and many doctors really resent that; and 3) the only people you can find who suffer from the same issues are strangers on the Internet. I have great affection for those strangers, but usually they can’t reach out and give you a hug or be able to correlate what is going on with your health to the other things that are going on in your life.
All that said, I feel extremely lucky at this point in time because there are people around me who are being tremendously supportive and, I believe, saving my life right now. So I’m not going to have a pity party for myself. Nope! My nature is to be optimistic, grab the proverbial bull by the horns and ride this thing until I am the picture of health. I find that a lot of the mental preparation and positive energy work that I do when I’m having a good, strong health day really gets me through the days where I feel like utter crap and just want to melt into the bed. For the first time in a long time I had multiple days like that this week. Tuesday onwards was hell. I found myself waking up in the wee hours of the morning and not being able to get back to sleep. I had the worst dysmenorrhea I think I have ever experienced. I felt tired and foggy, with random pains that I couldn’t figure out where they were coming from. And, of course, in the back of my mind is all the negative news I’m just constantly trying to push out of my brain. One issue after another after another…and I should really get back to that now.
So after reading and reading and reading some more about adrenal fatigue, I decided I just had to stop and pick some advice and stick with it. Someone in one of my MTHFR support groups posted a recipe for an “Adrenal Cocktail,” which led me to Dr. Larry Wilson’s website – and some information about adrenal fatigue. This seems to be the most accurate, considered information I have read yet. I had a tough decision to make: take adrenal glandular supplements or Isocort, or not. I chose not. As always, I want to improve things naturally. Stimulating my adrenals right now just doesn’t seem like the right thing to do and runs contrary to much of what is advised by both Dr. Wilson and Dr. Lam. Hopefully it’s the right decision. I cannot afford to make a misstep right now and end up worse off than I am. I’ll speak to my doctor about this when the other lab tests are in, but for now I am just trying to relax and improve my overall body balance.
Because the other issue I have at the moment is a functional B12 deficiency. Despite having high blood serum levels of B12, my methylmalonic acid (MMA) levels are high. This means that the B12 in my blood isn’t getting into my tissues. My doctor told me that she sees this in all her MTHFR patients. It’s caused a decline in my natural killer cells, meaning my immune system is weak. My SpectraCell micronutrient test came back showing deficiencies in Vitamins B2 (Riboflavin) and D3, along with Manganese and Calcium. I was borderline deficient in Pantothenate, Asparagine, Zinc, Copper, Magnesium and Chromium. So I have a lot of work to do. I’m going into week three of my homeopathic remedies for viruses and toxins so it’s too soon to tell how those are working. I’m reminded of one of my favorite sayings: “When you’re going through hell, keep going.” It is my belief that when the vitamin deficiencies, toxins and viral load issues are corrected, my adrenals will heal on their own.
I had to change up my vitamin supplements this week as a response to the above issues. I’ve added some supplements to help support my adrenals as follows:
Pantethine – the active form of Vitamin B5, which is required by the adrenal glands to create cortisol (this is tied to Riboflavin, which I am also lacking in and will supplement)
Proline – an amino acid recommended by Dr. Lam
Pregnenolone – called the “grandmother of hormones,” this neuro-steroid is a cortisol pre-cursor; this one needs to be used with care and I am only taking it for five days
I also have added in very, very small amounts of Lithium-Orotate to assist with B12 absorption. Again, Lithium needs to be added very slowly and only in small doses. More information on Lithium can be found in this Dr. Amy Yasko video.
Those dealing with B12 issues and chronic illnesses like ME/CFS will be interested in this excellent video of a presentation by Dr. Rich Van Konynenburg that I came across this week, which covers impaired detoxification capacity. Note that it is in three parts and the video is in English even though the website is in Swedish. If you have MTHFR, no doubt there is going to be something in here that is of interest to you. I am finding the B12 connection to be extremely interesting. It seems that so many aspects of chronic illness and impaired health are impacted by B12. With the prevalence of MTHFR mutations in the population, I think more people need to become aware of B vitamin deficiencies and how they are impacting their health, if not now, then in the future. Here is a post that helps you find out what type of B12 you should be using (very important!)
I will also continue to make healthy lifestyle adjustments that are essential for my recovery from adrenal fatigue. I’ll be creating posts about these in the coming weeks so that I may share some things that I’m doing that may help you on your own health journey.
“My sad realization for this week is that most of the health problems that I am afflicted with are strange ones….” and everything you said after is totally my life!
And wow, you have found a lot more than me. I’ve had three children since my diagnosis, I guess that’s kept me pretty busy! And I’m so glad you found about all these different kinds of tests. We moved in the past two years, from an area with better, more knowledgeable health care professionals, to a less-than-better area. I guess I don’t always know that I have the time, energy, courage, and money to keep trying a different doctor. But maybe I have to.
Glad to know it’s not just me. Thank you for sharing all the information you have found.
Been down this road going on 5 years now. I can relate to everything you’re talking about. I’ve spent $$$$$$$$$ trying to get better. Most doctors are worthless when it comes to real health. Anyways I’m at the point where I’m thinking about hormone replacement therapy. I tried everything, every adrenal protocol, every detox, sauna, foot spa, detox clays, etc you name it. Some things have helped, but nothing has fully cured me back to how I use to feel. Here in America I think we are fighting an up hill battle with poison in the food, air and water, plus our daily lives are full of stress in a way that our ancestors before us never experienced. One of the biggest reliefs I have found, just a relief is Abram Hoffet/Dr Saul b3 therapy on occasion, like once or twice a week. I do have a supplement regiment that keeps my head above water but still face that daily fog, tiredness, scatter brained feeling that keeps me from tackling life with the excitement of yesteryear. Like you, I am a research hound and I’m believing to solve this puzzle, or die trying. One thing I will say, The old cliche truth, your not thankful for your health until you lose it, is so true. Enjoy your health of you got it, and be grateful, love people the world needs it.
Hi Andrea, I’m so glad to find your blog. I’m having exactly similar issues you are facing and just went through so many docs that can’t seem to help. I just had 23 and me done and working with new ND starting tomorrow. I’m also using Dr. Lam and Dr. Wilson’s info on adrenals and now reading Dr. Wilson’s on detoxing. I have gotten better following Dr. Wilson’s nutritional eating. Your blog helped me to understand about my high B12 level and yet I seem to have B12 deficiencies. I do have Dr. Amy’s report where she mentions using Lithium Orotate. Hopefully after my ND visit, she can help me get started if that is what’s needed to correct B12 issues. So I appreciate FINALLY knowing and now I will check out the links you reference for more answers. THANK YOU!!!!
Andrea Post author
You’re very welcome, Vanessa – good luck!!
Not sure if this helps or if you are interested but for those struggling with B12 deficiency, I recently heard about a new oral prescription alternative to the injections. Has anyone heard of it or tried it, it’s called Eligen B12? Apparently it is the first and only true alternative to the intramuscular injection. I recently read that it works even if you don’t have intrinsic factor (so even if you don’t have normal gut absorption). I think it came out a month or two ago.
Andrea Post author
I am looking at it online now, Chloe but I see that it is cyanocobalamin, which is not the active form that people with MTHFR would want to take
Oh I see, sorry it wasn’t more help!
I’m happy to have stumbled on your site. I too am homozygous a1298c. My new doctor suspects adrenal fatigue and just also have b12 deficiency. I also have chronic daily migraines with aura. I am so exhausted all the time. It seems like all I do ‘s sleep.. it’s very hard to be patient with all these weird issues going on that few people understand.
Hello. I ran across your website today, and although this is an old post I felt I wanted to write you. I have several MTHFR mutations (heterozygous: c677t and a1298c)–this was confirmed with a 23andme test. I have been working on healing for several years now, and recognize much of what you describe in your post. You mentioned your thyroid, and I was wondering if you use natural desiccated thyroid or a synthetic hormone? And if so, what were your thoughts about it/them healing your thyroid? Also, have your read any articles by Raymond Peat –he has interesting ideas about healing your metabolism? I wish you all the best in healing yourself.
Andrea Post author
Hi Jan, I take Nature-throid, which is a naturally desiccated thyroid medication. For me, it has been a huge improvement over Synthroid and other synthetics. I have not read Raymond Peat’s work – at least I don’t remember having read any of it. Wishing you luck too on your healing journey!
Hi, I am needing serious help with all of this. Same stuff you are going through, but don’t know what to do. Bedridden and low cortisol. Tired of glandulars and all. FINALLY able to digest food and startd on methylB12 and methyl folic acid, but I read Dr. Yasko’s article on maybe the B12 I’m using is making me jittery. I can’t handle noise, I’m paranoid, in pain, lots of histamine, and I want to see the videos you posted, but they are hyperlinked and my computer can’t open them. I’m wondering if you will direct me to the videos and maybe coorespond with me about getting some help – especially re: pregnenolone. Thank you for ANYTHING you can do to help, direct me to help. I’ve helped so many people in the past get well through my blog, facebook, nutritional stuff (went through Hawthorn University), but I can’t get MYSELF well 🙁 I think maybe the fist step is Dr. Amy Yasko’s test, and last year or so, I had a Skype appt. set up with her and then she cancelled and I guess stopped doing appointments. I run into a brick wall every day. God bless you and keep you, make His face shine upon you and give you peace.
Andrea Post author
The only video that I see in this article is this one http://vimeo.com/26165981 – if you can’t click through, try just typing the URL letters and numbers into your web browser.
I’m very sorry to hear that you are going through so much trouble and pain. I’m not a doctor so aside from directing you to a list of practitioners: http://mthfr.net/mthfr-resources/ I’m not sure what I can tell you… Thank you for your kind words and I hope you find someone to see and assist you soon. All the best!
I’m going through the same thing. Years of adrenal problems. I’ll get it “under control” then illness or stressful event sets me back. Many other things like IBS, fibromyalgia, chemical sensitivity, allergies, depression and anxiety. I have cleaned up my diet, practice stress management and think positively. It’s frustrating when people make fun of these illnesses like I’m making stuff up. Came across 23andme and uploaded my raw data on geneticgenie.com, only to find out I have a mess of mutation problems. I’m homozygous MTHFR C677T, along with many other homozygous and heterozygous genes. I just started methyl B12 and methylfolate. Feel a big difference just in 2 days! I’m going to at lithium as well as I know I have a problem with this. Having a background in nutrition and working with naturopath’s in the past, I’m going to handle this on my own through research and talking to others like yourself.
Would love to stay in touch. I’ll be documenting my journey on my blog starting this weekend.
Andrea Post author
Hi Michelle, Sorry to hear you’re having problems too! And it’s a shame that more people don’t take these symptoms seriously. I’ve been feeling way better since starting my protocols and health investigations this year. I found that practicing natural remedies, homeopathics, getting on the right level of thyroid medication and taking the proper supplements (along with diet and lifestyle changes, of course) were really key to my improvements.
Please also check out my latest post on biological toxins as causative factors http://mthfrliving.com/health-conditions/viruses-bacteria-neuroimmune-disease/. I’ve done a lot of research on this, consulting both primary and secondary sources, and I really think getting tested for these factors will be an important step for many people.
Please share your blog when you get a couple of posts up! I’d love to stay in touch and read about your experiences too =)
All the best, Andrea
also in texas. live in s.a. have mutation MTHFR a1298c.
do you have TX dr.?
Andrea Post author
I have emailed you privately, Alan
Andrea Post author
Your email address bounced back…there is a doctor list here http://www.mthfrease.com/mthfr/2013/02/10/mthfr-docs/
Andrea Post author
Here are some additional doctor resources for those who are looking:
Do you live in the NYC area?
I face very, very, similar issues. (MTHFR +/+); Thyroid, Adrenal, CFS/FM, sleep, etc.
I’m looking for a new doctor, and wondering if you are in the area and can recommend one…
particularly dealing with Genetic SNP issues & HPA axis. Thank you in advance.
Andrea Post author
Hi Marti! I actually used to live in Manhattan but am currently based in Texas. Several people I speak with who have thyroid and adrenal issues swear by Dr. Wendy Huang in Colts Neck, NJ. I know that may not be close for you…
I have heard some good things about Weill Cornell – perhaps worth an investigation?
Dr. Michael Gruttadauria could be another option for you, in Long Island
Otherwise I would start my search at these websites:
Sorry I can’t give you a more personal recommendation – these are just some names and starting points that I have come across and that are recommended by others. Please do let me know if you find a doctor you recommend! Wishing you luck and health, Andrea
Hmmm. Not I’m really confused. I am MTHFR homozygous for A1298C. I also have low progesterone, pregnenalone and dhea. My doctor has me on compounded natural progesterone cream and compounded sublingual pregnenalone (50mg) and 10 mg DHEA. After reading the article you cited on prenenalone, i’m wondering if it’s all too much to be taking at the same time. My moods are a little better on the pregnenalone, but I have had heart palpitations taking both at the same time so now I’m taking the dhea in the morning and the pregnenalone at night. Any input?
Andrea Post author
I’m so sorry, Joy – I really can’t give medical advice here. My concerns about pregnenalone come only from some things I’ve read online. I hadn’t actually discovered the supplement prior to my doctor’s visit so I didn’t ask her about it. I have read, however, that pregnenalone can raise estrogen levels, which is something I have to avoid because of my breast cancer risks. What kind of doctor are you seeing? If you trust and have a good relationship with him or her I would just give a call and ask about the relationship between the pregnenalone and estrogen. Because I would think if you have progesterone deficiencies that you would want to keep those balanced. Perhaps your doctor has a good reason for prescribing it. As for DHEA, my doctor did mention that one to me, but I haven’t taken it. I really can’t speak about the pregnenalone from a scientific standpoint…I only took it for a week at a very small dose. I do think 50mg sounds like a big dose though. Are you trying to get pregnant?
Thanks for your comments. No, definitely not trying to get pregnant! I’m 41 and have a 1 year old (we found out about my MTHFR when I was trying to get pregnant and had a miscarriage). We’re trying to get my periods back in check, since my hormones have been crazy since I had the baby. Dr. also thinks I might be entering peri-menopause. I do think I will call my dr. and question the dosage of pregnenolone, especially since I am taking progesterone and dhea also. Enjoying your blog, thanks for letting us come along on your journey to better health!
Thanks so much, Joy! Good luck with it all and I’d be curious to know what your doctor says about the pregnenolone =)