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Could it be Folate Deficiency?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by gracee41, Dec 16, 2014.

  1. gracee41

    gracee41 Senior Member

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    I posted my iron lab results recently. I am low normal in serum iron. TIBC is in the upper limit. Ferritin is low normal. Anyway, I have had textbook symptoms of anemia for a little over 2 weeks now. I honestly thought I was going to die. Had to pull over one day on the highway and call 911 because my heart was beating so fast, thought I would pass out. Have high bp, pulse rate, shortness of breath, ringing in the ears, and feel like I'm freezing all the time.

    The doctors say my iron is fine. It must be my heart. Well, the holter monitor I wore for 24 hrs revealed nothing abnormal. I felt like the walking dead. Anyway, I started taking an iron supplement a few days after symptoms started and after a week, felt like I was human again. The difference was amazing. It slowed my heart rate and lowered my high BP. Now, all of the sudden, I can't tolerate taking the iron supplement. It makes me feel dizzy and generally unwell. It's strange.

    I'm starting to get all the anemia symptoms back. I have the MTHFR gene mutation and thinking now I must have a B12 or Folate deficiency. My B12 level is normal mid-range but have read several times that it can show normal and still be deficient. Also, my doctor ran a folate test on me 5 months ago. The results said my serum folate was greater than the assay limit of 20.0 ng/ml. I'm not sure what that means but sounds like I have a high level of folate in my blood and my body isn't processing/using it. My homocysteine is 10.4 (5.0-15.0).

    I know the treatment for B12 or folate deficiency is to take B12 or folate supplements. In my case, it would be methyl b12/folate. Maybe that is why the iron is bothering me now. I would appreciate your thoughts/feedback.
     
    Last edited: Dec 16, 2014
  2. drob31

    drob31 Senior Member

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    Have you ever had labs done for thyroid? It sounds like hyperthyroid symptoms mixed with hypothyroid, kind of like Hashimoto's.
     
  3. pela

    pela Senior Member

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    Blood tests for folate generally include folic acid which could be building up because you can't convert it to folate, and it could be blocking folate at the same time. And folic acid can cover up B12 deficiency in lab work. The best test to see if you are deficient in B12 is to take it and see if you feel anything. if you do, you need it.

    I agree it also sounds like hypothyroidism. Didn't you drop your thyroid dose a few weeks ago, so it would be affecting you now since you don't have enough T4 converting to T3?
     
  4. gracee41

    gracee41 Senior Member

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    A full thyroid panel was just done and I was shown to be "slightly" hypo according to my doc. The tests were done out of town so didn't see the actual results. My thyroid med was raised but I couldn't tolerate the increase. I could barely tolerate the dose I was taking.

    As confirmed by my thyroid forum on FaceBook, iron levels need to be optimal for the thyroid to work properly. Any increase in meds is not tolerated well until low iron levels are raised. I can definitely attest to this. After week of taking the iron, I raised my dosage and had no problem. Now, taking the iron is the problem.

    I started taking a small dose of hydroxy b12 and dibencozide before all of this happened. I added a little methylfolate as well but didn't really notice any difference in the way I felt. I ordered Dr. Yasko's All In One Multivitamin. I've just been taking one the last few days but after I posted this last night, I took a second one. Even though there is not a lot of methyl b12 or methylfolate in one capsule, that was my second capsule of the day.

    Within 30 minutes, I could feel a slight improvement in the way I was feeling. I don't think it was the placebo effect. I will take three capsules spread throughout the day today and see how I feel. I am cautiously optimistic. The thought of all my symptoms returning scare me.
     
  5. Critterina

    Critterina Senior Member

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    It sounds like you are on the right track. What you need to do is get your hands on your lab results, though. And perhaps iron every second or third day may end up being an option.

    I think a lot of people on this forum come up against one limiting factor after another, and you just work through them one at a time. Or something gets fixed, making something else, that you used to need to take, now too much. I'm starting to think: test early, test often.
     
    melamine likes this.
  6. gracee41

    gracee41 Senior Member

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    Thanks Critterina. I went one day without the iron and felt pretty good until last night. Started having heart palps and was very cold. My feet also have this strange tingling in them, almost like they are asleep. I've read that can be a sign of B12 deficiency. I couldn't sleep so finally resolved to take 1/2 a capsule of 25mg elemental iron. The palps stopped and I was able to sleep.

    Same symptoms came back this morning. Took another 1/2 capsule of iron. Didn't help much. I took two of Dr. Yasko's All in One Multivitamin yesterday but didn't help with symptoms. Actually, I got a headache and think two was too many to take. I think I will try some additional hydroxy b12 and methylfolate today in addition to one multivitamin. It's such a fine line. I don't want to trigger detox symptoms but am so miserable the way I am.

    I see my primary doc next Monday. I want to ask him to run tests to monitor my iron levels. However, my integrative thyroid doc has run numerous tests on me. All my tests keep coming back clinically "normal" within given parameters. Serum iron and ferritin are low normal but hemoglobin and MCV are normal. B12 is showing to be normal which as Pela mentioned, can be false positive if folic acid is elevated in blood. Homocysteine shows to be normal. CBC, lipids, and metabolic panel has also been run recently.

    I know how I feel and something is definitely not right. It's so discouraging when the doctor's have not a clue based on lab work. Too, unless you have a doc somewhat knowledgeable about MTHFR, which is rare, you are left to trying to figure it out yourself. Are there any additional standard tests I could have that might benefit me?
     
  7. Mary

    Mary Senior Member

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    Why don't you get some methylB12 and just try it? It's probably not a good idea to try get enough through taking several multi vitamins. It's very telling that you did feel better after taking the multivitamin which has methylB12, whereas methylfolate alone didn't appear to help you.

    I tolerate much higher doses of methylB12 than methylfolate, although the methylfolate is very important for me. I take 5,000 mcg. methylB12 (sublingual) - sometimes twice a day, a.m. and p.m., and 1600 mcg. methylfolate in divided doses. I know we are all different and have different tolerances. I found that more methylfolate made me detox quite a bit! But I do well with the 1600 mcg. But the B12 - I can take a ton of it with no problem.
     
  8. melamine

    melamine Senior Member

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    @gracee41 - Do you know for a fact if you do or do not absorb B12 duodenally? Do you take the All in One with or without food? Have you tried taking just the All In One 3 -4 x a day, as recommended, without taking any extra B12 or folate? Might it help sort things out with the thyroid and iron not to add those additional factors just yet?
     
  9. gracee41

    gracee41 Senior Member

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  10. gracee41

    gracee41 Senior Member

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    Yasko's multivitamin contains hydoxy b12 and methylfolate. I tried methyl b12 a few months ago and did not feel well on it at all. Even in miniscule doses, it bothered me. I looked at Yasko's chart of B12's that are generally tolerated better depending on your particular gene mutation. Hydroxy was the better tolerated for me. I don't seem to have a problem with it. I'm just trying to keep a good balance of it and the methylfolate. Want to take enough to help but not detox.
     
    melamine likes this.
  11. gracee41

    gracee41 Senior Member

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    I don't know if I absorb B12 duodenally but guessing I do. I've been gluten free for a while now and things that once bothered me when taken orally no longer do. The hydroxy b12 that I have is subligual. I've been taking the All in One with food. I took 2 yesterday and was going to take a third but got a headache I assume was from taking two of them. Haven't been taking them long and I know you are supposed to work up to 4 daily.

    I have not taken the extra folate or b12 since taking the multivitamin. I was just thinking a very small supplemental amount of both might help if spaced apart from the multi. It's pretty much trial and error. Just when I think I'm on the right track, I start feeling crummy again. Taking iron helps some but makes me feel bad at the same time if that makes any sense. That's what makes me think it's b12/folate related.
     
    melamine likes this.
  12. gracee41

    gracee41 Senior Member

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    Okay, I think I'm on the right track but nailing the details down will take longer I'm sure. The most pervasive of the symptoms I've been having are shortness of breath and tingling (pins and needles) in my feet. The shortness of breath always gets better after I take a little iron so it hasn't been too bad today since I took the small amount early this morning. However, the pins and needles in my feet have been worse today than any other time.

    I took about 250mgs of sublingual hydroxy b12 and then about 100mcgs of methylfolate about mid morning. I didn't notice even a little difference in the way I was feeling. A couple of hours later, I took one All in One Multivitamin. I have to admit, they make me feel a little strange. Within 30 minutes, the pins and needles started to subside and were gone within an hour.

    The multivitamin has no iron so my anemia deficiency has to be related to b12 and/or folate. Although, I read tingling is mostly noted with B12 issues. As I stated before, I took two of the multivitamins yesterday and had no relief of the pins and needles. Maybe the extra boost of hydroxy b12 and methylfolate before was enough to make a difference. I sure hope so.
     
  13. Mary

    Mary Senior Member

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    Got it - I didn't realize you did not do well on the methyl B12. Yes, it is definitely a balancing act! I tell my sister we are lab experiments - I recently started to take manganese because of a problem with one of my knees and I always test low in it on hair analysis, and then a few days ago had unexplained severe fatigue, it was driving me nuts. It wasn't from crashing or PEM or detoxing, the usual suspects. And then I read about how manganese can exacerbate low iron if you have low iron, it's a long story, but I cut out the manganese and today my energy started returning -- I hadn't paid attention to low iron before because I've been so focused on folate and B12 and magnesium and potassium, getting all of those up to snuff. But think I need to start addressing low iron issues now --

    Good luck -

    Mary
     
  14. gracee41

    gracee41 Senior Member

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    Thanks Mary. It can totally wear you out trying to keep up with all the supplements, their side effects, and the interactions they can have with other supplements. It totally consumes you. I hate that. I really feel bad for so many people here as I know they have been going through this a lot longer than I have and have it much worse.

    I guess when all is said and done, if I have to have anemia, I would rather it be caused by a B12 and/or folate deficiency. I realize some people have no choice but to take iron. However, it is not good for you and can cause issues as well.
     
  15. Critterina

    Critterina Senior Member

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    How did that visit go? What did you find out?
    As you can see by my multiple other posts, I really like the serum amino acid test and what it can tell you. It's standard in most labs, and you and your doctor can use the Genova Diagnostics interpretive guide as a starting place for what is going on with you.
     
  16. gracee41

    gracee41 Senior Member

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    Doctor couldn't find anything and actually told me he was sorry I was having to try and figure it out on my own. I am waiting on the results of a 24 hr saliva cortisol test. Many of the symptoms I've been having point to adrenal issues. However, I've been taking B12, high dose natural vitamin c, vitamin d, selenium, magnesium, and calcium and feel much better. I increased the B12 I was taking and it made me feel human again. If I do have adrenal issues, I will supplement accordingly.
     
    Critterina likes this.
  17. Critterina

    Critterina Senior Member

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    One thing that you should be aware of is that the saliva cortisol test is conclusive for high cortisol, but not for low cortisol. If you are in the lower end of the range, they should want to do an ACTH stimulation test (also known as a short cosyntropin test). And again, that may or may not be conclusive. The standards for how the results should be interpreted are controversial. [I am either really sick (Merck Manual, Mayo Clinic) or just fine (the three endocrinologists I've seen - Mayo doesn't see or treat people for adrenal insufficiency), depending on which criteria you use. Fortunately, I'm being treated as if I were sick, so I'm really, really feeling good, able to work, etc.]

    Also, the thyroid tests - some professionals treat low thyroid any time the TSH is over 2, others over 3, others wait until it's at the reference range (usually 4.5 to 5). It doesn't matter that your T3 and T4 are in the normal range if your TSH is high, usually.

    @Ema knows a lot more about these two things than I do.
     
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  18. drob31

    drob31 Senior Member

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    Ironically I felt better last year when my TSH was 4.1. After my adrenal incident, it dropped to 1.6, presumably suppressed by high cortisol.
     
  19. SwanRonson

    SwanRonson Senior Member

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    Are there any negative side effects from "too much methylb12" if the other cofactors are not present in sufficient quantity? Is there any toxicity associated with large amounts?
     
  20. Critterina

    Critterina Senior Member

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    If there is, you can't prove it by my experience. Either I have the cofactors, so no symptoms, or I don't have the cofactors, so it doesn't "do" whatever would be too much.
     

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