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Boo's Healing with B12 Journal

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by boo85, Sep 28, 2014.

  1. boo85

    boo85 Senior Member

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    @Freddd
    @ahmo
    @caledonia
    @Valentijn
    @Critterina

    I just wanted to regularly post here so I could track my supplements as well as reactions, and my healing journey.

    If you notice patterns in my healing, please post away. I hope this helps others here as well...

    Comments welcome. :)

    ~My other threads~

    Potassium questions

    B12 and depression

    What's the lowest amount of B12 that you have heard of people starting with?

    *** My Methylation profile from 23andMe ***

    My Story

    In September 2012 I started having heart palpitations so I went to my doctor who did routine blood tests...

    Vitamin D: 100 nmol/L (reference range: 75 - 160)
    B12: 175 pmol/L (reference range: normal = >180, pfffft)
    RBC folate: 791 nmol/L (reference range: >450)
    RBC: 4.82 x10 ^12 /L (3.80 - 5.50)
    (if you want more detailed haematology results, I can provide them)
    Thyroid TSH: 1.53 (previously 0.95 in 2010) (reference range: 0.50 - 5.00)
    Potassium: 4.2 mmol/L (reference range: 3.5 - 5.2)
    Urea: 3.8 mmol/L (2.5 - 8.0)
    Creat: 70 umol/L (40 - 85)
    Albumin: 33 g/L (35 - 50)
    Iron: 7 umol/L (reference range: 10 - 27)
    Transferrin: 3.83 g/L (reference range: 2.10 - 3.80)
    Saturation: 7% (reference range: 15 - 45%)
    Ferritin: 4 ug/L (10 - 150)
    Platelets: 229 x10 ^9 /L (reference range: 150 - 450)

    Taking a look at my iron results, looking back on them now, it's no wonder I was so tired! But my doctor didn't seem alarmed, just said that I should start an iron supplement. I can't remember whether I did start taking iron or what sort of iron it was.

    By January 2013 I had an appointment and tests with a cardiologist who ruled out a faulty heart.

    Then in late January 2013. I noticed that my arms were hurting, like I had Repetitive Stress Injury or something. Ok, no big deal, I can lay off using the mouse and computer so often. I like using the computer but if it's giving me a sore arm, I'll cut down a bit, I decided. So I tried to cut down.

    But as the days and weeks were going on, even when I wouldn't spend any time on the computer, the sore arms continued. It got to the point where after work I was sitting on the couch with a cushion underneath each arm with a compression bandage on my arm to help with the sore feeling. It felt like my muscles were hurting, but different...?

    I felt more tired. I couldn't even walk around my neighborhood anymore, which is something I love to do. I was breathless and felt like I had no energy. My arms hurt so bad I dreaded going to work. I couldn't even pick up a pen because it felt too heavy for my arm. When putting my hands in warm water in the sink, it felt like they were detached from my body. I got tests for arthritis, including a bone scan which came back clear.

    I was bumping into doorways, losing my balance. I was a girl in her 20s, yet I felt like a deteriorating old person. Doctors couldn't give me an answer as to what was going on. A co-worker said I looked really pale too.

    More blood tests... (February 2013)

    B12: 270 pmol/L (reference range: normal = >180, pfffft)
    RBC Folate: 1008 nmol/L (reference range: >450)
    Potassium: 4.4 mmol/L (3.5 - 5.2)
    Urea: 4.3 mmol/L (2.5 - 8.0)
    Creat: 60 umol/L (40 - 85)
    Albumin: 36 g/L (35 - 50)
    (if you need more results from general chemistry, let me know)
    Vitamin D: 83 nmol/L (reference range: 75 - 160)
    Iron: 15 umol/L (reference range: 10 - 27)
    Transferrin: 3.51 g/L (reference range: 2.10 - 3.80)
    Saturation: 17% (reference range: 15 - 45%)
    Ferritin: 10 ug/L (10 - 150)
    RBC: 5.03 x10 ^12 /L (3.80 - 5.50)
    Platelets: 196 x10 ^9 /L (150 - 450)

    By chance, searching for supplements for repetitive stress injury on the Internet, I came across someone suggesting B12. So I went to the pharmacy and bought some tablets and took one on the Wednesday after work.

    This was after my doctors appointment where he basically said it was because I didn't like my job, so it was coming out in physical symptoms, wtf? Doctors would rather die than ever admit to not knowing something, of which there is a lot they don't know. Too much pride. Or they turn it around on you, making you question yourself. Whether you do really have a problem, insinuating it's "anxiety" or all in your head. All because they can't admit that they don't have an answer.

    It's a sad state when the worst doctor will try to make you feel crazy because they don't want to admit inadequacies, and the best doctor will say "I don't know" and at least admit it. Most doctors are only good at diagnosing broken bones. Go beyond that, especially with mental illness or nutritional deficiencies, and if there is no script or bandaid solution to throw at the symptoms, then they don't know what to do.

    So I bought vitamin B12 pills and took one that day and the next day, Thursday. By the Friday, the pain in my arms felt a lot better. I knew B12 must have been the answer. On the Saturday I took 2 B12 pills, totalling 500mcg. By dinner time I felt really drowsy and out of it. I had a shower and retired to bed early. I was watching a movie and felt delusional, not normal at all. Like just really out of it.

    So I tried sleeping it off but I didn't feel good at all. So I got up to go to the toilet then my heart started beating really fast, faster than it had ever beat before. I thought my heart was going to beat out of my chest. So I stumbled to my sister's room and told her to call ambulance for me.

    Long story short, I felt better at the hospital and they couldn't find anything wrong, but now I'm pretty sure that because of suddenly starting B12, I had a low potassium attack. I am living proof that low potassium is VERY real and I'm convinced that I could have easily had a heart attack and died, had my heart not slowed down.

    So I knew that I did have low B12 because the physical pains I was experiencing was going away, but that weekend I had very high anxiety. I couldn't think straight. The morning I had to go to work a few days later I was a nervous wreck. I ended up calling in sick that week saying explaining to my boss that for the past month I had pains in my arms and needed to get it investigated. My boss was less than understanding since they had no-one to cover for me (but I'm human too and I'm going to put my health first.)

    In the time that I had off work I had an MRI to rule out Multiple Sclerosis, which thankfully came back all clear. They did find a slight widening of my spinal cord, but they think it was something I was born with and that it's nothing to worry about?

    I ended up having to leave my job because I was so anxious. I was still regularly taking B12 at this time. Looking back it was either the B12 tablets that caused my anxiety (but it did make my physical symptoms go away which I'm thankful for) or it was maybe low potassium from taking B12 that was causing great anxiety. I was also getting weekly B12 injections. I can't remember exactly how many I had, but probably between 10 - 15 x 1000mcg hydrocobalamin injections weekly between June - September 2013.

    I had a test to see whether I could absorb B12:

    Gastric Autoantibodies

    Gastric Parietal cell antibody: negative
    Intrinsic factor antibody: negative

    Apparently I can absorb B12 in my stomach ok?

    So for most of 2013 was a blur of SUPER anxiety caused by B12, but I was to scared to stop taking it because I didn't want my symptoms to come back, plus I was generally quite scared. I must say that I would regularly have nights where I'd go to sleep with a headache, and I'd wake up in an anxious state not being able to feel my arms. I found a Wikipedia article that describes this as low potassium to a "T" - http://en.wikipedia.org/wiki/Thyrotoxic_periodic_paralysis and felt like exactly what I was experiencing and at the times I had it (late evening to early hours of the morning.) At some points I felt so weak that I might not wake up. During the day it caused me great anxiety too. I didn't want to be alone, I was so scared. I would experience paralyzing fear.

    I experimented at this time with taking varying levels of B12 of several months. Eventually I started lowering B12 because the low potassium or whatever reaction to B12 that I was having was becoming too much. Maybe it was the injections I had but I seemed to be feeling better going off B12 (tablets and injections) so I was feeling a lot better in November and December 2013 onwards, my guess is from the injections I had during 2013.

    However in May 2014 I started gradually feeling sad, crying over things I probably wouldn't have cried over before. It got really bad where I was not even wanting to live anymore. I felt like I was in a hole that I couldn't get out of. It was a gradual slip into depression over 6 months.

    At some points I felt so disconnected where all I could do was lie on the bed. I knew I had to take B12 to feel better, so I'd manage to have the clarity to do that. And that same day my mood would lift. So I knew that B12 had something to do with it.

    So that's where I have been the past few months, trying this B12 this again because it needs to be addressed with me. Trying to navigate symptoms from not taking enough B12 (pains in my temples, depression) and the reactions when taking it (jolts in the night, anxiety, stiff muscles, headaches.) I'm an example that B12 can affect people physically (pains in arms, weakness, loss of balance) and mentally (depression.)

    In July I started taking supplements faithfully every day, starting with a B12 injection per month, Vitamin D and getting back on B12. Initially I was scared the B12 injections again because of my past reactions to B12 thanks to (I think) low potassium and/or start-up effects, understandably. I also got my blood tested again...

    Blood test results (July 2014)

    Sodium: 143mmol/L (136 - 146)
    Potassium: 4.6 mmol/L (3.5 - 5.2)
    Chloride: 107 mmol/L (98 - 109)
    Bicarb: 28 mmol/L (20 - 32)
    Urea: 2.9 mmol/L (2.5 - 8.0)
    Creat: 72 umol/L (40 - 85)
    eGFR: >90 mL/min
    Urate: 0.20 mmol/L (2.5 - 8.0)
    Vitamin D: 23 nmol/L (>75)
    Glucose (fasting): 4.5 mmol/L (3.0 - 5.4)
    B12: 337 (>180)
    RBC Folate: 629 (>450)
    Thyroid/TSH: 0.38 mIU/L
    Iron: 28 umol/L (10 - 27)
    - Transferrin: 2.94 g/L (2.10 - 3.80)
    - Saturation: 38% (15 - 45%)
    - Ferritin: 13 ug/L (10 - 150)

    One of the things I'm concerned about with those results above is my ferritin, which was as low as 4 at one point. I would like to get it to over 100, ideally 120. I've took supplements for my ferritin last year and I believe I stopped this year until June or so, but even then it's only gone from 10 to 13 in the space of 5 months...

    I know it can take years to get ferritin up since it's a very slow process. If anyone has any experience with low ferritin and getting the levels back up and could give some advice with what to look for in a ferritin/iron supplement and how much per day I should be taking, that'd be appreciated. What level of iron/ferritin should a menstruating female aim for?

    Any comments on my Vitamin D levels? Personally I haven't found any difference whether my Vitamin D is high or low and supplements on their own didn't really help my energy levels or depression, but you never know...

    Any thoughts on my thyroid levels?

    I'm hoping to get my blood tested again in January 2015.

    ---

    My 23andMe Results

    COMT V158M rs4680 AA +/+
    COMT H62H rs4633 TT +/+
    COMT P199P rs769224 GG -/-
    VDR Bsm rs1544410 CC -/-
    VDR Taq rs731236 AA +/+
    MAO-A R297R rs6323 TT +/+
    ACAT1-02 rs3741049 GG -/-
    MTHFR C677T rs1801133 AA +/+
    MTHFR 03 P39P rs2066470 GG -/-
    MTHFR A1298C rs1801131 TT -/-
    MTR A2756G rs1805087 AG +/-
    MTRR A66G rs1801394 GG +/+
    MTRR H595Y rs10380 CC -/-
    MTRR K350A rs162036 AA -/-
    MTRR R415T rs2287780 CC -/-
    MTRR A664A rs1802059 GG -/-
    BHMT-02 rs567754 CC -/-
    BHMT-04 rs617219 AA -/-
    BHMT-08 rs651852 CT +/-
    AHCY-01 rs819147 TT -/-
    AHCY-02 rs819134 AA -/-
    AHCY-19 rs819171 TT -/-
    CBS C699T rs234706 AG +/-
    CBS A360A rs1801181 AG +/-
    CBS N212N rs2298758 GG -/-
    SHMT1 C1420T rs1979277 GG -/-


    My daily supplement schedule

    (if it changes, I will document in my journal)

    2 x magnesium (total magnesium in each 325mg from oxide, heavy, 507mg and amino acid chelate 150mg. Manganese 6mg as amino acid chelate and Vitamin B6, 60 mg.

    1 x magnesium amino acid chelate 500mg equivalent to elemental magnesium 100mg

    1 x iron - 325mg dried ferrous sulfate equivalent to 105mg of elemental iron

    1 x iron - ferrous fumerate 5mg, folic acid 95mcg, Vitamin C 100mg, Vitamin B6 5mg, Vitamin B12 50mcg

    half a tablet x iron + B complex - iron amino acid chelate, 100 mg (equivalent iron 10mg.) Vitamin B1, 10mg. Vitamin B2, 10 mg. Vitamin B3, 15 mg. Vitamin B5, 5mg. Vitamin B6, 4mg. Vitamin B12, 10 mcg. Vitamin C, 75mcg. Biotin, 50mcg.

    4 x Vitamin D3 1000IU, cholecalciferol 25mcg each.

    3 x cod liver oil capsules, 160mg containing 400IU of Vitamin D in each capsules.

    1 x per month an injection of hydroxocobalamin 1000mcg

    + 1.33 grams potassium salt x 3 (breakfast, lunch and dinner) = 4 grams of potassium salt per day, plus the potassium in whatever food I happen to eat that day (usually half a banana, potatoes, spinach etc depending on what meals are served)

    I've also been cutting out gluten for the simple fact that wheat makes me put on weight and makes me bloated so I don't think it agrees with my body at all. For the most part I don't even eat grains, no sugar either for the past few years (not even honey or agave or maple syrup, definitely no artificial sweeteners.) So I guess you could say that I eat more of a primal diet. I just don't seem to be able to absorb nutrients all that well, I guess.
    ---

    Mon 22nd September 2014

    So last night I was feeling groggy when I went to bed. I also felt a bit anxious and wired but also really tired at the same time. I turned off the light and tried to sleep but my body felt "frozen" like I couldn't really move, and my head felt really heavy. I felt disorientated and anxious.

    I turned on the light so I could feel calmer. I kept waking up. My body felt heavy and I kept getting jolted awake just as I was trying to get to sleep, just like happened last year in my past experience section above.
    I'm usually the best sleeper and I love to sleep all through the night so the above is NOT normal for me at all.
    The day before last night I took a total of 4 grams of potassium salts, spread throughout the day (breakfast, lunch and dinner.) Plus I ate a banana and had potatoes with my dinner. So probably not more than 5 grams of potassium total yesterday.

    I'm also wondering with the timing of taking potassium is important. I usually take my last potassium dose (1.3 grams) between 6 - 7pm, and have been going to sleep between 9 - 10pm. Maybe if I try to take it later, it will have more of an effect? Also, does it take time for potassium to build up in my body?

    I've been finding that I've felt really depressed in the mornings. Hopelessness and heavy feeling in the chest. But once I get out of bed and get moving, I feel better and positive. Is this something to do with B12? Or potassium? It feels like an actual chemical imbalance. Very strange.
    Tuesday 23rd September 2014

    Last night was better though I noticed that from 9pm onwards, I felt like there was an electrical heaviness from my brain, that's the best I can describe it. I had a few jolting sensations where my muscles felt tight and I was being jolted awake while trying to fall asleep.

    I just realised when going through my supplements that one of my iron tablets that I've been taking for the past 2 - 3 months has 50 mcg of B12! I don't exactly remember when I started taking them, but it was probably for about a couple of months now. I needed to bring up my iron anyway, and these were lying around so I decided to use them up. So it goes to show to check your supplements thoroughly to make sure you know exactly what you're getting in them. I never thought an iron tablet would contain 50mcg of B12. Not even some Vitamin supplements contain that much...

    I'm wondering whether consistently taking this iron supplement each day with 50mcg of B12 has helped get my out of my depression without even knowing it. I thought it could have been the monthly B12 shot or Vitamin B12 injection once per month that was helping my depression, but maybe this accidental taking of 50 mcg of B12 each day has had a hand in it too.

    Wednesday 24th September

    Last night was still the same anxiety when being asleep, feeling like something was very wrong, and feeling out of it, but being able to sleep through it. But that feeling fades away after I get up. Is this something to do with my body clock? It always happens around the same time? Or is it to do with the time I take B12?

    I got up straight away and I had my first dose of potassium salts (1.33 grams) with water. I can't say that during the day I'm feeling 100%, mentally or physically, I still feel tired and a bit sad, but I'm hoping to get back to 100% and feeling normal some day...

    The RDA/RDI for a breastfeeding woman is just over 5000 mg. So if my body is healing and needs extra potassium because it is repairing itself and creating new blood cells, then I think that's a good enough reason to give my body the extra potassium it needs. I'm just worried about too much potassium since I know it's deadly, but it's silly of me to think that because as far as I know I have no problems with my kidneys and if I do take too much potassium during the day, I should be able to pee it out anyway.

    I wanted to try something different and take extra potassium during the day. So far today I've already taken my 4000mg (4 grams) of potassium salt and will take another 1 - 2 grams at dinner. This means that today instead of having my usual 4 grams potassium salt, I should be having 5 - 6 grams. I wish there were more studies or a guide to the safe level of potassium...

    Another thing I'm worried about it that high potassium symptoms seem to be quite similar to low potassium symptoms so I'm worried if I take soo much, I might not be able to tell the difference. It's also hard to tell the difference between start-up B12 symptoms and low potassium.

    I also seem to be craving potassium lately from foods, like choosing bananas, and even eating a whole one per day, even when I usually avoid bananas since they're so sweet. This is out of character for me, so I think I'll follow what my body is wanting. I hope it's a good sign and a sign of healing if I need more potassium and am craving it. I've already ordered more potassium salts. I take the A Vogel Herbamare Low Salt with Herbs. 1/8 teaspoon equals one gram.

    Does anyone know how long the need for potassium lasts when taking B12? Does it take time for B12 to build up in your system, or does it need to replenished every day for as long as the B12 is creating new cells?

    I've been changing the way I take my vitamins too, in the past couple of days, so that they don't interfere with each other. I usually take my cod liver oils and vitamin D tablets at about 2 - 3pm, then B12 and two iron tablets an hour later, then my magnesium tablets with dinner. With potassium salt with each meal, of course.

    Any suggestions for when I should take these?

    I used this - http://www.kidney.org.au/healthprofessionals/gfrcalculatorckdepi/tabid/803/default.aspx - calculator to test my kidney function to know whether it's safe for me to supplement with potassium salts. I entered in my latest creatine levels which is 72 umol/L, and the other details such as age and gender, and the eGFR was 97, so does that mean my kidney fuction is at 97%?
    Thursday 25th September

    Last night I didn't feel as anxious. I ended up taking 5 grams of potassium salts yesterday instead of the usual 4 grams. BUT I did have a mini panic attack during my sleep and had to calm myself down and count to ten so my heartbeat would go back to normal.

    Also, I was getting the attacks again where I'd try to fall to sleep but be jolted awake. My muscles felt frozen and tight too. It felt less like muscle jolting more that it was electrical from the bottom of my spine upwards. I think it could by hypnoclonic jerks? But it's hard to know if it's the regular muscles jerks that people sometimes get when drifitng off to sleep, but mine feels different than that. This isn't new, I had these last year at night when taking B12, probably about less than 100mcg daily.

    Is this low potassium or a reaction to B12?

    Is the night time when my body is trying to rest is when it is trying to repair itself?

    I definitely know it's caused from taking B12, but why, I don't know. I've been unknowingly taking 50mcg of B12 each day for a few months now, so why is this jolting while trying to get to sleep starting now?

    I've also been feeling down this week compared to last week and I don't know why... I'm wondering whether this is a normal process to be up and down, on the way up, so to speak. It's just very exhausting to be on an emotional roller coaster. Over time it takes its toll to not know how you're going to feel the next day.

    Maybe it was because I was due for a hydro B12 shot today and it was getting closer towards that time when I was due to have it again? That's just a guess. But I got a full hydroxocobalamin B12 injection today anyway, just as I have the past couple of months, so hopefully that gets absorbed and used to its potential and lifts my depression. Today again I took 6 grams of potassium salts, like I did yesterday, plus a whole banana as well as other incidental foods that happened to have a bit of potassium in it. My kidneys seem to be processing any extra potassium that I don't need, pretty well. But the real test comes at night time when I start to get a headache, can't fall asleep without being jolted awake, tightened muscles of my whole body. Funnily enough I don't feel -that- tired during the day. I'm usually the best sleep around and can easily sleep for 9 - 10 hours per night, all through the night, no troubles. So this is something completely different. If I'm not sleeping well, then something is wrong.

    Do I have to make an effort to keep my salt/sodium intake down when needing potassium?

    Will eating too many salty foods cancel out the potassium I'm taking?

    Friday 26th September

    Yesterday I had the 1mg hydrocobalamin injection. I took 6 grams potassium salts yesterday. I skipped taking the iron withthe added 50mcg B12 in it. By 7 - 8pm I could feel that familiar headache coming on, with a high-pitched noise ringing in my ears and head. I stayed up a bit later than usual and went to bed about 10:30 - 11pm and actually had a better night's sleep. Not perfect or normal but way better than the past few nights. No jolting awake or anything.

    I'm also in a better mood today than yesterday. I'm wondering whether a B12 injection suits my body better than tablets (either cyanocobalamin or methylcobalamin.) I've always had a hunch that it's the case. In July after my first injection in something like 8 months, I could feel myself feeling better and coming out of my depression. I'm wondering whether my doctor will agree to injections every two weeks. I'd really like to try injections every week. I think I process it better and make use of it better. I know Freddd said that injections are not the way to go, but I really think it works better than tablets in my case, but if I can find a way to supplement with tablets also and work out why I'm getting these jolting and anxiety side effects, then I don't mind doing both injections and tablets.

    Is it possible to have take hydroxocobalamin B12 orally?

    Today I took only half of my iron tablet, so I ended up only having 25mcg B12 today. I didn't want to jerk in bed anymore so decided to cut it back and see if that helped.

    Saturday 27th September

    Last night I felt that familar buzzing in my head, but I had a pretty good sleep. Not really much to comment except I don't remember having any jolts or anxiety or anything so that's really good.

    I'm feeling really good today mentally, happy, even. In the morning, while lying in bed, I felt a bit down, but once I got out of bed I felt better and got a lot done in the morning, had a lot of energy, laughing and having fun. It must be the B12 injections... I want to go to my doctor and explain that the injections are really helping my depression and whether it's ok to have them every two weeks. Surely she should say "yes."

    Like yesterday, today too I only took 30mcg of B12 (half of my iron tablet, 25mcg, another half of a different iron tablet, 5mcg.) Maybe I just don't react to B12 in tablets very well because it seems that I can take a big amount of B12 1000mcg, fine and actually get positive results from it. But the tablets give me anxiety, jolts while falling asleep, headache, pani attacks.

    Sunday 28th September

    Not much to report. Had a fairly good sleep last night.

    My mood is a bit down today compared to yesterday.

    Am going to continue only taking between 25 - 35mcg B12 each day.

    I'm wondering whether I should take tablets at all, whether they agree with me, and if I should hope that my doctor will agree to an injection every 2 weeks. But I'm worried that if I stop taking B12 through vitamins that I could slip back into depression and I really don't want that...
     
    Last edited: Sep 28, 2014
  2. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    Wow, lot's of info. I don't know anything about lab results, so will comment on what I can. I've been progressing by self-testing and tracking/treating symptoms. Self-testing is a great aid to understanding what the body wants/needs.

    Self-testing http://www.youtube.com/watch?feature=player_detailpage&v=Ex59wHLk3Q0

    Re iron: My understanding is that populations of bad bacteria love the iron you feed them. Before I found GAPS diet, I'd begun using iron nearly continuously, w/ no impact on blood tests. I've learned this from GAPS info, forums, in case you want to follow it up. http://www.gaps.me/preview/?page_id=32

    [​IMG]

    I can't see any references to folate here. B12 must be accompanied by folate. Please look through the Guide linked in my signature.

    Folic acid is a poor form of folate. Mfolate is more easily absorbed, for some folinic acid is fine, but folic acid is not.

    You should have the other measures of thyroid. TSH is pretty useless. Free T3, T4, reverseT3 (rT3).

    No.

    Are you sure about these doses of potassium? Are these the elemental K+ amounts? If so, it's indeed high. I use K+ gluconate powder, generally taking 1500mg twice/day. You're talking about 5 - 6 grams. Check your container, see what the dosage of actual K+ is.

    You're better off taking your cod liver oil and Vit D w/ meals. Oily supps w/ meals is good.

    You need them both....

    Fred uses both forms. What he doesn't use/endorse is hydroxyB12. Others think it's useful. See his comments in the Guide linked in my signature.

    That's about all I'm capable of commenting on. I'm sure some others will chime in. cheers, ahmo
     
  3. Gondwanaland

    Gondwanaland Senior Member

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    I think it would be useful if you add the reference ranges next to each one of your lab results :thumbsup:
     
    Valentijn likes this.
  4. caledonia

    caledonia

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    Cincinnati, OH, USA
    Ok. OMG. Basically everything that Ahmo said. Reference ranges on the labs would be helpful as Gondwanaland said.

    Your doctor is not knowledgeable - on both labs, B12 deficiency is screaming out at you, coupled with the neurological and mental health type symptoms = B12 deficiency and/or methylation cycle issues. Not to mention him making you feel crazy. Hello? :bang-head:

    You have to do a complete thyroid panel, not just TSH, to determine what's going on with your thyroid. I wouldn't be surprised to see elevated thyroid antibodies for example.

    Also no mention of methylfolate - you need to take that with B12 for balance - they work together to create methyl groups. Folic acid won't easily convert to methylfolate if you have the MTHFR mutation (highly probable).

    The jerking awake while sleeping could be low magnesium causing twitching feet or legs. I get this. The magnesium works with potassium and they need to be in balance. If you're leaking out electrolytes (having deficiencies), your adrenals are also likely affected. Sodium is another electrolyte you may want to consider adding to your electrolyte mix, especially if you're craving salt or salty foods.

    So basically what is going on is you're manipulating your methylation cycle, whether you realize it or not. You don't have it tweaked right for your body, because you're not getting good results.

    My suggestion would be to start to get yourself educated on methylation and also, at some point, get two tests - a 23andme genetics test, so you can see what your methylation cycle genetics look like and also a Nutreval test, so you can see what nutrients you actually need and if you need to work on your gut, and/or have toxic metals.

    I have links for all this stuff in my signature, starting with the Methylation Made Easy videos. The next three links after that outline a complete "Yasko lite" methylation treatment, which is what I'm doing. The document "Roadblocks to Successful Methylation" may be especially helpful right now.

    I also have a link to practitioners who are supposed to be familiar with methylation. Some of them will do phone or Skype consultations if there isn't anyone in your area.
     
  5. boo85

    boo85 Senior Member

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    Thank you @ahmo

    Thanks for the info about the GAPS diet. I'm already on my way to being completely wheat free, gluten free and I'm pretty much grain free. I don't eat sugar. Do you think taking probiotics will help me?

    I'm sorry, I'm not sure what elemental K+ is.

    I'm pretty sure I've worked it out ok. I ordered in A Vogel's No Salt Potassium and Herbs replacement salts in a salt shaker. It is 97% potassium salt and 3% herbs (for flavouring.) It says on the container that 1/8 teaspoon = 1 gram potassium. I take between 1/2 teaspoon, sometimes even more in one day, so that should equal at least 4 grams of potassium salt per day, is that right?

    Where do you get your K gluconate powder from?

    I don't have those thyroid tests... Will my doctor (Australian) do Free T3, T4, reverseT3 tests if there's no real reason to?

    Is there a difference between hydroxocobalamin injections and hydroxyB12 injections? Or are they the same thing?

    Is it possible to get L-Methylfolate at any shop in Australia?
     
  6. boo85

    boo85 Senior Member

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    Thank you! I've edited my original post!

    I hope it helps a bit, even though we know already that reference ranges don't mean crap (like with B12 for example.) :mad:
     
  7. boo85

    boo85 Senior Member

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    Thank you!

    I edited my original post and added in reference ranges. :)

    I take two different types of magnesium each day...

    2 x magnesium (total magnesium in each 325mg from oxide, heavy, 507mg and amino acid chelate 150mg. Manganese 6mg as amino acid chelate and Vitamin B6, 60 mg.

    1 x magnesium amino acid chelate 500mg equivalent to elemental magnesium 100mg


    Do you think this is enough? How much magnesium do you take each day? I have no idea if this is considered a lot of magnesium, too little or not enough...

    Thank you for your validation about my doctor. I just wonder sometimes what the point is of going to them in the first place? Putting this B12 issue aside, I've had a handful of other health issues where they have NO CLUE what is going on with me, and, I'm sorry but a lot of doctors have gigantic egos, they can't admit they're wrong, so they'll put it back on me basically telling me it's all my head. :mad::vomit:

    How much sodium do you think I should take per day?

    I already got a 23andMe test.

    COMT V158M rs4680 AA +/+
    COMT H62H rs4633 TT +/+
    COMT P199P rs769224 GG -/-
    VDR Bsm rs1544410 CC -/-
    VDR Taq rs731236 AA +/+
    MAO-A R297R rs6323 TT +/+
    ACAT1-02 rs3741049 GG -/-
    MTHFR C677T rs1801133 AA +/+
    MTHFR 03 P39P rs2066470 GG -/-
    MTHFR A1298C rs1801131 TT -/-
    MTR A2756G rs1805087 AG +/-
    MTRR A66G rs1801394 GG +/+
    MTRR H595Y rs10380 CC -/-
    MTRR K350A rs162036 AA -/-
    MTRR R415T rs2287780 CC -/-
    MTRR A664A rs1802059 GG -/-
    BHMT-02 rs567754 CC -/-
    BHMT-04 rs617219 AA -/-
    BHMT-08 rs651852 CT +/-
    AHCY-01 rs819147 TT -/-
    AHCY-02 rs819134 AA -/-
    AHCY-19 rs819171 TT -/-
    CBS C699T rs234706 AG +/-
    CBS A360A rs1801181 AG +/-
    CBS N212N rs2298758 GG -/-
    SHMT1 C1420T rs1979277 GG -/-

    Any thoughts? :hug:
     
  8. Critterina

    Critterina Senior Member

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    With your MTHFR C677T +/+ you don't make methylfolate very well, and when you use the mB12, you use up what little methylfolate you have. Supplement methylfolate if possible - start slow. All of the neurological symptoms you describe can be due to lack of methylfolate (and lack of it's byproducts of conversion to folinic acid).

    And I stopped reading at Sept 26 - it's a lot to take in, but I just had to say - "methylfolate".
     
  9. Critterina

    Critterina Senior Member

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    Magnesium: most practitioners say you need at least 400 mg and not more than 800 mg. Some people report that they need 600 or 800 Mg to get any effect. Mg should be on your labs, so you can see if you are high or low.
     
  10. boo85

    boo85 Senior Member

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    Thanks, Critterina.

    Does my methyl report show that I'm the worst at creating methylfolate from folate?

    When you say "start slow with methylfolate" how many mcg or mg should I plan to take per day?

    Does that mean neurological symptoms from methylfolate are a whole different category than symptoms from low B12?

    How much magnesium would you say I'm taking at the moment?

    2 x magnesium (total magnesium in each 325mg from oxide, heavy, 507mg and amino acid chelate 150mg. Manganese 6mg as amino acid chelate and Vitamin B6, 60 mg.

    1 x magnesium amino acid chelate 500mg equivalent to elemental magnesium 100mg


    I'm confused when it comes to "total magnesium" and "heavy magnesium" and "elemental magnesium" etc...

    I couldn't find magnesium on my test results. Would be named something other than magnesium?
     
    Last edited: Sep 29, 2014
  11. boo85

    boo85 Senior Member

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    Monday September 29

    Was feeling reeeally depressed this morning. I cried it out and seem to be feeling better this afternoon.

    I can't take these mood swings though... :(

    Last night I had a bit of a twitch when drifting off to sleep, but overall slept well.
     
  12. Critterina

    Critterina Senior Member

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    Boo,

    Some people crush up a methylfolate tablet, lick a toothpick, and take whatever it picks up. Some buy a 400 mcg tablet and take a quarter of it. Personally, I started with 1 mg, at the advice of my health care practitioner, with no ill effects. Maybe buy a 1 mg (1000 mcg) bottle of Solgar brand, crush it up, try the toothpick, and if no ill effects, try more every hour or so, up to the quarter of tablet the first day. If you notice ANY difference, hold it for a few days before increasing it. If no difference, double it. For people with depression, there are Rx strengths of 7.5 and 15 mg of methylfolate, so don't worry about it if you can do 1 mg without noticing. There are lots of people here who use 3-4 mg/day.

    I was trying to figure out how much Mg you are taking and couldn't. Are you sure you have all the commas and line breaks exactly like it is on the label?

    The oxide often has a laxative effect because it's not well absorbed, so stopping that my cause stools to become harder. But that also means that you're not getting the benefit that you would if it were Mg glycinate or another chelate compound.

    So, it looks like you're getting
    650 from oxide
    1014 mg "heavy" - and I don't know what this is
    400 from chelate (that would be like the glycinate or asporotate - probably very bioavailable) combined sources
    Total: 2064 mg

    That looks like a lot to me. But you might want to change one thing at a time, and the methylfolate would be top priority.

    No, Mg or Magnesium is what it would be - maybe they didn't test for it. No worries, just ask them to do so next time.

    You do know that the serum B12 measures inactive plus active, so your being low to begin with was an understatement. You could measure in range and still be functionally low because of your trouble activating it.

    Critt
     
  13. ahmo

    ahmo Senior Member

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    K+ = potassium. So it seems that you, indeed, are taking 4+ grams/day. I wonder why your body is needing so much. Are you eating a lot of salt??

    I'm also in Oz, order most of my supps from iherb, US.

    Sometimes Drs don't like to order rT3 unless there's already some confirmed thyroid issue.

    This is what you need to total up for K+ and Mg. Elemental = the amount of the actual mineral you're getting, separate from whatever it's combined with/bound to. Generally the elemental amounts are listed on the label, where the actual dosage is written.

    OK, that's all I can do for now.;)
     
  14. boo85

    boo85 Senior Member

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    Thanks Critterina.

    Thanks for the info about methylfolate. I'm nervous about taking it because of my reaction to B12 in the past. So I'm extra cautious about taking too much of something or I might get a reaction...

    I'm looking into ordering it online since I don't think you can buy it in Australia.

    Is Jarrow the best brand of methylfolate? Anyone know an online store I can buy methylfolate using PayPal instead of a credit card?

    The way you broke down magnesium makes sense. I don't get any loose stools from magnesium, so I'm guessing I haven't yet reached that limit of too much magnesium.

    So even if my test says 135 of B12, I may not be able to use all of it anyway? Currently I'm at 337, but I want to get to at least 500, then 700 then 800...
     
    Critterina likes this.
  15. boo85

    boo85 Senior Member

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    I will order online if I need to, but do you know any shop in Australia that sells methylfolate?

    I'm not sure whether I need 4 - 6 grams of potassium per day, but I seem to be taking that much anyway. I didn't want to risk hypokalemia again. My kidneys seem to be working really well, so I guess that I can just pee out any axcess potassium anyway if I take too much. I'm not sure if I does any good or nothing at all, but yeah, if I take B12I want to take enough potassium so I don't end up in the ER again. :eek:
     
  16. ahmo

    ahmo Senior Member

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    I've never looked for Mfolate in shops. The few supps I buy locally are from ebay, bulk supplies. Great that you're doing fine w/ the potassium.:thumbsup::balloons:
     
    boo85 likes this.
  17. caledonia

    caledonia

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    Awesome that you have 23andme results in hand already. Use the "SNPs Interpretation Guide" in my signature below to interpret it. In general, it looks like you're going to need both methylfolate and B12, but use the slower version of B12 (hydroxycobalamin) due to your COMT mutations or it can set you off mentally.

    Here's how I dialed in the electrolytes - first off, I used powdered versions which mix in water and drink those four times a day at breakfast, lunch, supper and bedtime.

    First I dialed in potassium. I increased it until I hit a "sweet spot". If it was too little, I had potassium deficiency symptoms, if it was too much I felt worse.

    Then magnesium - increase that until you get diarrhea, then back off a notch. Magnesium oxide doesn't absorb well, so switch to any other form - magnesium taurate, magnesium glycinate, etc. As an example, at one point I was taking 1800mg of magnesium per day which is an incredibly huge amount. Now I'm taking 825mg.

    Then add sodium. I've used everything from plain table salt with no iodine, to pickling salt, to Trader Joe's sea salt, to fancy Celtic sea salt. I actually like the cheaper salts better added to my water/potass/mag solution. I increased the amount until I wasn't craving salt, and the water tasted pleasantly salty. If it's too salty it will start to taste icky or make you feel a little not good. Any more I don't need to add salt, but if I need a touchup, I put a few crystals of the fancy Celtic salt in my palm and lick that off and that satisfies me.

    I need a lot more supplementation at bedtime than during the day.

    I also had to add in some calcium as I found out I was low in that and I was getting muscle cramps. I just take one capsule per day for that. It doesn't seem to be nearly as touchy as the other three.

    Read "Start Low and Go Slow" in my signature links for more info on how to dial in supplement doses. I also use self muscle testing extensively along with trial and error.
     
    ahmo likes this.
  18. Critterina

    Critterina Senior Member

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    First, methylfolate is B9. Start a slow as you need to. And if you get some symptoms, remember it could just be a virus. Stop, then when you feel well, start again and see if the same thing happens. It will help you use up B12

    I think Solgar is a really good brand of folate. I tried Piping Rock also, same ingredient from the same manufacturer, much cheaper, but the jury is still out.

    Even if your test says 500, with the MTRR A66G, you may be able to use only a small portion of it. Unless you take methylB12 sublingually, the MTRR enzyme has to put the methyl on it, and that +/+ means you get a small fraction produced, compared to a person with -/-.
     
    boo85 likes this.
  19. boo85

    boo85 Senior Member

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    Thanks Caledonia. :)

    I looked at the SNPs interpretation and it's really helpful. it says both my COMT V158M and COMT H62H are +/+. What relation does this have with depression? Does this mean that I naturally have less dopamine in the brain?

    It's funny that you say that cyanocobalamin or methylcobalamin may set me off mentally. I've always had a hunch that I tolerate hydroxycobalamin better than other forms of a B12. Every time I have an injection of hydroxocobalamin it lifts my depression that little bit more.

    Yet, as you can see, I've been struggling with reactions from taking both cyanocobalamin and methylcobalamin, which matches with what you say with me getting panic attacks from taking B12 tablets.

    MAO-A R297R is +/+ for me, so am I defective in this gene as well? Would this explain my depression?
     
  20. boo85

    boo85 Senior Member

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    Thank you, that really makes sense and I am understanding a bit more about methylation now.

    How can you tell from my 23andMe results whether I can use folate?
     

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