The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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My story please can anyone help

Discussion in 'General ME/CFS Discussion' started by Lisa6235, Aug 21, 2013.

  1. Hi

    I am new to this forum and wondered if I could gain any advice. Like everyone I have a long story of struggle and this is my last attempt to try and get some answers. Il try and give you as much information as I can without rambling on too much.

    I developed hypothyroidism 12 years ago after a miscarriage well I don't know if for sure it was as the doctors. Tested me 3 weeks after my miscarriage and put me on meds ever side t4 and t3. . It's then my life has changed and never been the same or I have never been the same. I was also out on hrt as my menstural periods stopped and was told i had gone theough the menapause and I would never have a baby. After 9 years of being on hrt (was on it from 22) I came off it as I wasn't getting any information of the doctors why I should be on it I was getting fobbed off at every appointment. During the 10 years I have had a list of symptoms
    Brain fog
    Differculty understanding clear instructions to the point where I felt like I could not read anymore or add simple mathmatics up
    Loss of hair
    Pale skin
    Joint pain
    Muscle pain
    The list could go on.
    I came of hrt and a month later I had a period and yes by month 3 (yes all them years inking I could not have any children) I became pregnant.
    During my pregnancy my t3 went high and therefore gradually decreased and now just take t4. Maybe pregnancy kick started my body maybe and I have felt a tiny bit better by not taking it. Also during my first pregnancy they found I was b12 deficient and folate deficient And was given supplements and oh boy that's when the issues started. I felt very anxious, hallucinating and well very mentally unstable and to be honest I felt suicidal. I went back to my obstetrician and he did not believe me, I was severely anaemic and needed folate, iron, b12 but every doctor did not believe me, I tried taking them every other day but the side effects were to severe. , I managed to get to 37 weeks and the obstrteician delivered me early due to my severe anaemia.

    In the hospital bed I was talking to a kind lady about how I came to have my baby at 37 weeks and she mentioned methylation. It's then where all this began and why I am here.
    I managed to have done test done as I have spent thousands of pounds in the past and this is my last attempt. I managed to get referred by my go The tests were done at my immunology department and the consultsnt who has looked at my results and said all great now discharged me therefore I am at a loss what to do as I still have anemia along with all my other nasy symptoms
    My results are below

    Taurine 41 to 78 result 59

    aspartic acid trace 5 result 9

    thirelnine 75 to 189 result 218

    serine 67 to 129 result 174

    asparagine 34 to 82 result 62

    Glutamic acid 10to 67 result 27

    Glutamine 575 to 781 result 770

    glycine 162 to 335 result 465

    alanine 205 to 496 result 372

    citrulline 17 to 33 result 39

    a amino butyric acid 10 to 40 result 13

    valine 151 to 302 result 185

    cystine 34 to 67 result 26.

    methionine 13 to 32 result 21

    isolecuine 38 to 83 result 44

    leucine 77 to 162 result 79

    If anyone has any advice I would be so grateful

    I know the glutamate needs to be lowered along with serine but not to sure how this is done.

    Thanks Lisa x
  2. caledonia


    Cincinnati, OH, USA
    Hi Lisa. I think you do have methylation problems and that would explain most, if not all, of your problems. The test you listed is an amino acid test, not a methylation test. Save it, it might be helpful later.

    If you can get a 23andme gene test and post it here, we can start to help you get this untangled. You should also get your baby tested if you can, as your baby will have inherited half of your genes, and it will be helpful in determining what vaccination schedule to follow. If your baby has similar genes to you, he or she can be susceptible to developing autism or other methylation based problems. So you can head these sorts of things off by knowing his or her genes.

    The 23andme test is a saliva test and you don't need a doctor. Only $99. I have the link for it in my signature.

    You can also look at the Methylation Made Easy videos and start to educate yourself on what a partial methylation block is and how to treat it. I have many other links in my signature with good methylation info.

    Another really great test to get is a Nutreval test, which is a functional test. It includes the amino acids, but also 5 or 6 other tests and will give a really great overview of what is going on in your body and what areas will need to be addressed. The Nutreval is $700 and you don't need a doctor for that either. The problem with that might be finding a lab to do the blood draw.

    It sounds like you might be in the UK? Can you post your country in your Personal Details/Location so we can give recommendations based on your country? It will show up under your avatar picture after you post it. So go to your username at the very top of the page, and that stuff will be in the drop down menu.
  3. Crux

    Crux Senior Member

    Hi Lisa;

    It does look like a methylation problem, as Caledonia writes.
    I don't know about amino acids testing, but, here's a link to Metametrix's interpretive guide, and their suggestions:

    It looks to me that the B vitamins are needed, with emphasis on B6. There can be a type of anemia from B6 deficiency. ( microcytic, small red blood cells.)

    There are a variety of anemias in addition to low iron. B12, folate, and even low copper. ( Copper aids the absorption and distribution of iron.)

    I don't know how much, and what type of B12 and folate you were prescribed, but it probably was too much.
    The B vitamins are very powerful, as you know, so starting with very small amounts may work better.
  4. caledonia


    Cincinnati, OH, USA
    Yes, lay off the B vitamins until we can get a look at your 23andme results. I'm suspecting either CBS or COMT issues. You have to work around those to be able to tolerate B vitamins.
  5. Wow thanks you for all this information so quickly what a great help. Now I have a starting point at least. I am here in the uk and will update my profile. Due to my severe iron deficiency my gp has ordered me to have an iron infusion, I am very concerned at the side effects this is going to have. As I am not taking iron tablets due to the side effects mentioned he thinks one big hit will raise my iron levels very quickly as my ferritin is 0.8 . I am struggling with the side effects of being anemic therefore thinking it may help me in some kind of way.

    I will order the 23andme test and post the results as soon as I get them. Thank you for all your information it's been very helpful. I also had the most sever reaction to vitamin d3 not to sure I'd I mentioned that in my earlier post. Is there any supplements i could start takin to get the ball rollin I have ordered some basic neurological vitamins from holistic heal: dr amy and not to sure if I should start staking these.

    I also forgot to mention that I have toxic effects from any antidepressents drug especially Prozac and citalopram.

    Thanks again
    Lisa x
  6. hope


  7. caledonia


    Cincinnati, OH, USA
    Have you tried the iron tablets by themselves and not in conjunction with B12 and folate? Were you still having bad side effects?

    Is there any way you can get a tiny injection to test the waters on the iron? I would be afraid of getting a big injection, in case you have a reaction. On the other hand, getting an injection would be bypassing the gut and that could be ok.

    With all of these adverse reactions to supplements, I'm thinking you may also have leaky gut. The Nutreval test would show if the gut is an area you need to address. There are other tests for the gut if you can't do the Nutreval.

    The side effects to the antidepressants can be due to your detox genetics. We'll be able to see those genes on the 23andme test. Plus you probably have poor detoxification in general, due to methylation issues. If you've already had reactions to two psych drugs, stay away from them! Another brand isn't going to be any better.

    If you want me or anybody else to be sure to see your posts, then put an @ sign before their username in your message. Like this Lisa6235, and they'll get an alert (at the very top of the page) that they've received a message.

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