Requesting help with Folate questions.

[Sita505USA]

Hi all

I tried to post a long essay yesterday, but it didn't work. I have a history of stomach surgeries and anemia. The anemia got much worse after 2012 when I had a bowel resectioning for scar tissue and I started having iron infusions.

This summer has been very bad, and I needed infusions in June/July when I had erratic heart rate, anxiety, weakness, in addition to the "normal" symptoms that I have of vision problems, balance issues, stomach and digestion issues, weakness, fatigue, etc.

I have been doing SI since April of last year every other day. Two weeks ago when my anxiety and heart palpitations increased and my digestive tract and elimination systems started to shut down, I increase to 1,000 mg. daily. Since then I have felt worse with a stopped up head, increased anxiety and heart palpitations, leg weakness, electric sensation, spaciness, etc.

In January I got a folate reading of 94.3 (5.6-56.3). I had been taking Mdtafolin 400 MCG by solgar, I cut the tabs in half, so i stopped taking them. I take a multiple with Folate from organic food 500 mcg. I tried restarting with 400 MCG metafolin for a couple of days in June and felt edgy with neck tension that I associate with folate so I quit taking it.

I have been feeling so terrible lately, and am basically on my own with trying to figure all of this out, with the exception of you kind folks. Could I not be having menthalation without taking the metafolin? Can lack of folate cause all of the very bad symptoms I am having? I took 200 mcg yesterday and today and have not felt the horrid physical, not emotional, anxiety as much today.

Any advice, suggestions are welcome! Sita

[fbirder]

I'm not sure if I've got this right -

You had been taking methylfolate supplements and felt bad. Your folate levels were sky high, so you cut back a little and felt better. Then you took methylfolate again and felt worse. Yes?

If so, I would stop the methylfolate, wait two weeks and get my folate levels tested. If they were low then I would try folic acid, 200 mcg a day.

People assume that you need folate supplements if you're having B12 injections. This isn't necessarily so. Pernicious Anaemia can hinder the absorption of folate from food, but it's not definitely going to cause a deficiency.

For the vast majority of the population folic acid is just as effective as methylfolate, is much cheaper and seems less prone to causing some side effects.

[Sita505USA in reply to fbirder]

Thanks!! So sorry to be unclear.

I wonder what symptoms folks get when their folate is low?

[Gambit62 Administrator in reply to Sita505USA]

they overlap hugely with B12 symptoms but come on quite quickly. B12 deficiency tends to come on much slower but if you are hovering around B12 deficiency it is going to be difficult to distinguish the twojust from symptoms

Serum folate is a good guide to folate status.

[Sita505USA in reply to Gambit62]

Thanks Gambit! It is very hard to sort out what causes what. It is also difficult to persuade doctors to do folate or other tests. In the US they get very little training in these areas and are just as uninformed as they seem to be in the U.K.

[Sita505USA in reply to fbirder]

Hi there

I was trying to quit the folic acid and methyfolate and managed since Tuesday to be off, but I am feeling much worse with weird yawning, feeling almost like I have the flu, no energy, etc. Long story short, I decided since I had been on a very low dose of Erythromycin for 20 days that that may have depleted my Folate. Anyway, I just took 400 Mcg of methyfolate and plan to keep on it and add in a multiple with folate 500 mcg tomorrow. I will see a doctor on Monday and basically have not been off folate for the two weeks you suggested. Will it do any food to ask for a folate blood test?

Any idea how long it takes to get folate and B12 back up after antibiotics? Many thanks, Sita

[Mrshughes30]

I've struggled with digestive issues for years. In 2015 I began to have radiating pain and tingling in my left leg and arm. I lost a lot of weight and spent many nights in the ER. Summer 2016 I started experiencing tachycardia in the middle of the night and and I stressed and lost a ton of weight. I resigned from my job of 10 year's because it brought me down to literally nothing. My neurologist told me that it's likely damage to my vagus nerve. My Gastroenterologist has me ok a Celiac diet because they feel that's what it is but it's hard to diagnose. I too have had iron infusions and now on a folic acid supplement. I also suffer from unstable blood sugar in between meals. Know that your not stressing for no reason, hope things improve for you.

God hears and answers prayers 🙏.

[Sita505USA in reply to Mrshughes30]

Many thanks for your reply. I am also hoping that you also see improvement very soon. I have just started seeing an RN/acupuncturist. I just started taking some vile tasting herbs as well as the treatments. I am well aware that I am putting weird things in my body that may skew

figuring things out, but I am so frustrated with medical doctors who have initiated nothing but tests on me, all of which have been inconclusive. A few months ago a doctor, whom I like, was advocating that I take Ranitidine, which I believe is now being taken off the market...

And the journey continues. All my best, Sita

[foxglove in reply to Sita505USA]

Hi re. ranitidine, I am in uk (Wales) and ranitidine is readily available her - even in the Pound shops where it only costs 99p a pack and you can buy as many as you like. My gripe is that Codis has been taken off the market here and I have used it for many a year . I'm now 80 and have not come to any harm!!!

I too am frustrated to the point of screaming with docs. tests tests and more tests proving nothing

[ThePATexan]

It took an oncologist to find my PA along with Folic Acid deficiency. (I’m in the US too). He was very careful to distinguish between folate and folic acid, explaining how important it it to get real folic acid in the case of true deficiency. I couldn’t believe the difference it made. He did also explain that taking too much can cause the same symptoms as deficiency (like most of these seemingly related deficiencies) and should be regularly be monitored by a doctor who understands your deficiencies. I had terrible heartburn as well and it improved markedly once I got on the right supplements in the right doses. I might suggest a catecholamine test (suppressive NOT antagonistic). It is not super invasive, nor expensive and only takes about an hour for the test. It can cause stiffness and pain that closely mimics MS if catecholamines are high. You may have to press a little for this one, but your story sounds like it has tell-tale hints of high catecholamines as mine did. They were, over 4000 higher than the top threshold for suppression. It will cause attacks of neck pain up and down your neck, one or both sides, then radiate pain from your temples back to behind your ears. My cardiologist did that test, but I think it is usually endocrinologists who do it. He had suspicions due to SVT and some other unusual and rare cardiac issues. I hope this helps!

[Sita505USA in reply to ThePATexan]

Thanks for your response. I too have an oncologist/hematologist. I really like him and he has been the most aggressive doctor I have seen, but he is not open to many things. When my B12 was 472 after supplementing, he would not prescribe a trial of B12. He refuses to believe too much B6 can cause problems, etc...

I will be seeing a neurologist eventually for an MS work up and will ask about testing catecholomines! The possibilities sometimes seem endless and overwhelming!

[ThePATexan in reply to Sita505USA]

It can get disheartening sometimes, but keep pushing. If you are near a Texas Oncology, they are my best recommendation in the area for getting a diagnosis (unless you are able to get into Mayo, they are known as the best diagnosticians. Then will work with your local doctor for proper treatment). UTSW is great at the treatment part.

[ThePATexan in reply to ThePATexan]

I also wanted you to know that you definitely are not alone. And we cut things short in these messages because our stories are so long, but I feel it’s important for you to know I had to see four different Oncology hematologists before I got an accurate diagnosis for the imbalances in my body’s essential vitamins and minerals alone. My doctor when this started was a reknown oncology hematologists, yet broke HIPPA, told patients I know that it was just in my head and I wasn’t sick. Scary that could even happen. Before this current doctor even did a single test, he went through her entire five-year file on me and found all of the evidence he needed that showed what my conditions were. He apologized for her incompetence and my suffering due to it This one was actually not a hematologist but an oncologist that deals with the rare and hardly seen forms of cancer so he recognized many more clues than the majority of doctors have or would have. As with other doctors that I had seen, when he first saw me he did not think I had PA. A week later when all of my testing came back. He called me to come back in. It turned out that I was severely deficient in quite a few necessary vitamins and minerals. A good oncologist will see the importance in getting it precise and accurate at a CELLULAR level. SERUM & blood tests cannot tell you if your body has an issue using it, so you could have 50 times as much as you need in your blood but it won’t matter if your body cannot process it. I wish you the best. PM me if you are interested in the doctors name.

[fbirder in reply to ThePATexan]

That’s strange. Most people who know nothing about folate say that you don’t want folic acid (real or imaginary) but you want methylfolate instead.

Of course, both are wrong. For the vast majority of people folic acid works just as well (but only real folic acid).

b12science.com/B12Science/D...

[ThePATexan in reply to fbirder]

Yes, he was adamant about patients with dysauatomic and immunology issues needing to be on Folic Acid, specifically. Oddly, it has seemed to help with my acid reflux, bonus!

[Sita505USA]

Thanks for responding; I believe the medical care in Texas is better than what is here in New Mexico. I went to Mayo, but they were looking at a brain MRI with an irregularly. No doctor has isolated an area to focus on. I have had stomach surgeries so they think it may be related to gut issues, but going to Mayo for stomach issues isn’t an option; they no longer accept my insurance and would want repeats of tons of GI tests. It really is hard to find a doctor here who can see you regularly and actively follow up and work with Mayo; they are so overwhelmed that most follow up appointments are for four months. I know I sound defeated, and that is what I feel right now. I keep trying things suggested here

and hoping I will feel better enough to have more energy to actively pursue more options. I appreciate you and all the folks here!

[ThePATexan in reply to Sita505USA]

I know how you feel and defeated is a bad place. I am not sure how reassuring this will be, but I’m the “I’d rather know” type. My started with GI stuff. Just about 3 months ago another amazing doctor here found that all of this going on in my body has caused dozens of stroke remnant lesions, at least 3 aneurysms and the remnants of a major bleed across the top of my brain. Sometimes these things do not seem to be connected, then suddenly the right doctors come along and you find out that it is going to take treating all of the issues in order to get you living a more comfortable and healthy life. I truly hope that for you in the near future.