#functional vitamin deficiency

[the2amrevolution]

Emotionally overwhelmed by the possibility of having my body back.

[the2amrevolution]

Part of the problem is that CFS/ME is unlikely to be just one pathology. Its a syndrome - a collection of symptoms. Thats part of why I have never been satisfied with that answer and so have tried to keep up with research into its pathology and comparing things I've found to my own symptoms. Following that research is what led to me reading about MTHFR mutations, which led me to taking methylfolate, which led to me discovering I likely have both a methylcobalamin deficiency and pyridoxal-5-phosphate deficiency that are the root of my CFS, POTS, worsening MCAS, hypersomina, and other progressive symptoms.

MTHFR mutations affect between 1 in 3 and 1 in 10 people, depending on race and nationality. They cause a deficiency in methylfolate which raises homocysteine levels and has a similar effect to a B12 or folate deficiency, but with normal B12 and folate levels.

Cobalamin metabolism disorders are more rare, but they are also very easily missed because total B12 blood tests are normal. The most common cobalamin metabolism disorder causes a deficiency of the usable forms of B12, leading to elevated methylmalonic acid and elevated homocysteine as would be seen in a B12 deficiency from diet or malabsorption. More rare disorders, or currently unknown and so undiagnosed disorders, can cause just a deficiency of methylcobalamin which will have nearly identical symptoms to a methylfolate deficiency.

One research team has hypothesized that an autoimmune disorder affecting the production of adenosylcobalamin may be behind multiple sclerosis. Impaired B12 metabolism leads to defective myelin, which the immune system tries to clear out. Something similar happens with methylcobalamin deficiency. Only genetic cobalamin metabolism disorders are recognized currently, but there could be autoimmune forms as well.

Similarly, some researchers think MTHFR mutations may be behind the trifecta of hEDS, POTS, and MCAS where patients often also fit CFS/ME and fibromyalgia criteria. Methylfolate deficiency can cause methylcobalamin deficiency, and methylcobalamin deficiency also leads to faulty myelin. Methylfolate and methylcobalamin deficiencies also cause problems with how DNA is read to make proteins, leading to faulty collagen, more damaged enzymes, and a variety of other metabolic problems.

The degree of impairment of the enzymes involved would impact the degree of severity of the damage done to the body. A mild deficiency over time would cause a slow, steady increase in platelet count, worsening allergies/MCAS reactions (homocysteine can trigger mast cells), and a wide variety of neurological symptoms as myelin degrades from lack of methylcobalamin and homocysteine causes excitotoxity.

While researching this, I found that there may also be millions of people with a functional pyridoxal phosphate deficiency who have no idea and no doctor is going to know to look for it. The people at risk are those who take B6 supplements and anyone who takes replacement thyroid hormones, both T4 and T3.

Most B6 supplements are a form of the vitamin called pyridoxine hydrochloride. This form can't be used by the body as is, it has to be converted into pyridoxal phosphate first. However, if taken at dosages that overwhelm the conversion to PLP, the pyridoxine itself can bind to PLP receptors on enzymes and block their function.

Free thyroid hormones also bind to PLP receptors, and they do it readily. A study in the 1950s found giving thyroid hormones to rats significantly blocked PLP enzyme function, especially in the liver. Ingested thyroid hormones are free when absorbed by the intestines and sent to the liver, and from there they can bind to carrier proteins which keep them from going places they aren't supposed to. In order to stop the thyroid hormones from interfering with the PLP enzymes, you need to significantly increase how much PLP is in the blood. How much more exactly is unknown, but is likely proportionate to the hormone dosage. Without supplementation or a diet quite high in natural B6 sources (not fortified sources), the body will start to use up the PLP it has stored up in the past. How fast someone depleates their PLP stores depends on how much B6 they get from their diet and thyroid hormone dosage. Functional PLP deficiency has the same symptoms as B6 deficiency, but bloodtests for the vitamin will be "normal." The demand for the vitamin is greater, so standard deficiency screenings aren't going to be useful.

PLP deficiency can also cause elevated homocysteine. Since enzymes in the intestines and liver are the most affected, people may have changes in gastric motility and in liver function tests. Over time, as the stores of PLP run low, people would develop signs of an overall B6 deficiency including neuropathy, dry and cracking skin, mood and sleep changes (PLP is necessary to make serotonin, dopamine, and melatonin), systemic inflammation and oxidative stress (PLP is needed to make the bodies most abundant antioxidant), and liver damage or disease.

Theres also a number of genetic conditions that can affect PLP levels, and, theoretically, there could be an autoimmune impact of PLP metabolism, so people who aren't taking thyroid hormones or pyridoxine can still have a PLP deficiency with normal total B6. PLP levels can be specifically tested and would show low in most of those cases.

The best news about both methylcobalamin and PLP deficiencies is that they are treatable without a prescription. Methylcobalamin lozenges or liquid for sublingual administration (to avoid the first pass effect which would make the supplement useless for the specific conditions that cause low methylcobalamin) and pyridoxal-5-phosphate/P5P/PLP are both available for a fairly low price online. Both are water soluble with limited uptake to storage and no toxicity, so whatever isn't either used or stored will be excreted in urine.

I have had CFS since fall of 2015. I was diagnosed with Hashimoto's and began taking thyroid hormones spring of that year. The onset and progression of all of my symptoms match having either a methylfolate or methylcobalamin deficiency combined with a PLP deficiency.

Taking methylfolate when you dont have a deficiency will increase demand for methylcobalamin, and if you can't meet that demand you will get sicker. Thats what happened to me, even though I was taking a normal B12 supplement and had high serum B12 - thus indicating the methylcobalamin deficiency. I got a methylmalonic acid blood test which indicated no deficiency of adenosylcobalamin, which eliminated the more common cobalamin metabolism disorders. I'd rather be extra rare than have a trio of deficiencies though.

If you take methylcobalamin without a deficiency, nothing changes and you pee it out. If you take it and you have a methylfolate deficiency, nothing changes and you pee it out. If you take pyridoxal phosphate without a deficiency, nothing changes and you pee it out.

These supplements do not interfere with any medications. Thyroid hormones can impair PLP enzymes, but PLP has no effect on thyroid hormone receptors.

This means that methylcobalamin and PLP are easily accessible and safe supplements that people with CFS/ME, fibromyalgia, and/or hEDS trifecta can try even if they don't have access to a helpful doctor.

The remaining question is how long they take to have effect. I can tell you that the PLP helped me in a matter of days. Better energy, better executive function, and some improvement to sleep. The methylcobalamin will take longer to have impact as the major effect of the deficiency is damage to the nervous system.

My neurological symptoms primarily come from the lumbar region of my spinal cord and the reticular formation of my brainstem. I dont know of any way to predict what parts of the nervous system get affected most, but by listing out all of my symptoms and learning the functions of different parts, I was able to trace all of my neurological symptoms to those two places.

Based on other types of B12 deficiency and other adult-onset cobalamin metabolism disorders, treatment has the potential to lead to full healing of damage done in the course of the deficiency. Lasting damage seemed to mostly be in cases where patients presented with strokes, embolism, etc. which caused additional damage. Other patients have full recovery as long as they continue to have the form of B12 they need.

I've so far only been taking the methylcobalamin for less than a week. Thats not enough time to recover from 8 years of damage, unfortunately. Right now I just have to wait and not push my neurological limitations just because I have more energy and focus. I have some very objective symptoms that are what I'll be monitoring most, since others like chronic widespread pain are more easily influenced by other factors. Im hoping that I will be able to point to definite improvement of at least a symptom after a month, but it could take longer. There's honestly no way to know.

Now, disclaimer, I am not a doctor or any other licensed medical professional. I'm a disabled person with the resources to experiment on myself and the ability and education necessary to understand the science enough to connect the dots and weigh the risks. I weighed the risk of taking methylfolate, but I turned out to be an outlier with a 1 in 100 million condition rather than the 1 in 3 for my demographic (granted the 1 in 100 million may be wrong, but thats the approximate current diagnosis rate). However, since what I found indicates zero risk for trialing methylcobalamin and/or PLP, I feel comfortable sharing what I've learned and what I am doing. Its always a good idea to talk to a pharmacist about possible interactions and to talk to a doctor about any other conditions you may have, and taking any supplement is always at your own risk.

I also understand the desperation of people chronic pain, fibromyalgia, and/or CFS/ME for anything that may help their condition, and it is hard for me to keep information to myself while I wait to see how things go, when the information has the potential to start helping someone who may not be able to make it until I have everything in a clear presentation format and my personal results.

As I continue my own treatment trial, I will be reaching out to various doctors and researchers about this and sharing more about my history, research, and how things are going. I will also be working on having cited, edited, clear, and easy to distribute information rather than... this or "look into trying these supplements and just trust me" which sounds about as useful and trustworthy as "try yoga."

even if you did the barest minimum research, the Wikipedia page for chronic fatigue syndrome is so sad. it’s like “this is what we diagnose people with when we can’t find anything else wrong with them. but it’s definitely something physical because there are visible neurological changes seen in neuroimaging and weirdness with the immune system. full recovery rates are less than 5%. the most common treatment is CBT which ignores the fact it is a physical illness and tells sick people they’ll get better if they just stop thinking about being sick.”

[boguscelluloid]

Chat real question:

I have such a bad vitamin d deficiency that my body is attacking itself to the point I can’t function without crazy fatigue. I prevent myself from going to places where I know I’ll have to walk or exercise because it causes me so much pain and tiredness.

Would it be appropriate to use a mobility aid like a cane? And is this a disability or smth cause I genuinely feel disabled with not being able to walk

Ok thank u

[carcarrot]

im about to solve all my problems (going to start taking vitamin d)

[evilsexy]

hate when people draw your favorite character slightly too muscular. like girl be for real you know he’s supposed to be malnourished. this man has 2 or 3 critical vitamin and mineral deficiencies at a minimum

[aggressionbread]

I can't believe I was just functioning for who knows how long with a gallbladder 2-3x the size of what it should have been??

[capetowncapers]

Always tired bitch behavior is crying a little after you get off the phone with your doctor’s office bc you’re excited and happy your pcp can see you next week to chat about your fatigue and really glad you finally made the call. It’s a start and I might have to get a number of tests done to rule things out but I’m trying to hope it gets me answers and a way to not always feel exhausted.

[petrichorandarson]

i am sitting in the sun. there is a gentle breeze. i have a fruit popsicle. life is good.

[sensitivedead]

:--)

[smartweightlosstip]

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[spartanmemesmedical]

What Happens if Your B12 Deficiency Is Left Untreated?

What Happens if Your B12 Deficiency Is Left Untreated?

Introduction: Vitamin B12, an essential nutrient for nerve function, red blood cell production, and DNA synthesis, plays a critical role in maintaining overall health. However, when B12 deficiency goes untreated, it can lead to a range of health issues, from minor discomforts to severe complications. In this blog, we’ll explore the potential consequences of ignoring B12 deficiency and why timely…

[the2amrevolution]

Well hell. Appointment went well, but still my labs still came back not as expected. I still have one that hasn't come back, but it one that should be in normal range, just low for me personally. Though, if it comes back low generally, then that will open another path to figuring out whats wrong. I just don't think it will.

I feel awful and continuing to not take my supplements until I'm in the ER or my February appointment to try testing again isn't really a good option.

This is, BTW, one of the reasons I want to look into developing safe, easy home testing methods for one of these tests. I would be able to test weekly until I'm 100% sure that its not being impacted by supplemented vitamins or stored supplemented vitamins.

I could resume everything except for the PLP and methylcobalamin and see how that goes until February.

I hate that I got covid because I wouldn't have taken the methylcobalamin at all if I hadn't, so thered be no skewed results. I also wish that testing just methylcobalamin level were possible outside of research studies.

This is so frustrating. I'm torturing myself trying to get lab results 100% because of the American insurance system. Having a list of symptoms that match my theory isn't good enough for insurance to cover genetic testing and it costs a cool $1k out of pocket. If I can't get an MRI that shows the charactistics, then out of pocket will be the only option. If I can get an MRI and it doesn't show the characteristic changes, then I have no idea whats going on and all I can do is take the supplements and hope I get better anyway.

The problem with that is that there's no way to then prove I was right and that it wasn't something else or a fluke, and thats not helpful to other people suffering similarly.

[stevenspacil]

Unveiling the Health Benefits of Vitamin K

Introduction: In the world of vitamins, vitamin K often stands in the shadow of its more renowned counterparts like vitamin C or D. However, its significance in maintaining optimal health should not be overlooked. From promoting bone health to supporting blood clotting, vitamin K plays a crucial role in various bodily functions. Let’s delve deeper into the health benefits of this underrated…

[vector-to-the-heavens]

me: why am i so tired literally every day :(

my doctor, reading my lab results: you have. The Deficiencies

[ncityzen]

got my blood test results back there's multiple things wrong with me I kinda got the vibe already ✌️

[girlawstenknight]

i didntget sick for like 9 months and now i am miserably ill. fuck my life i feel like one of those cis guys who is such a baby about it . i used to be gods strongest soldier when i got sick like twice a month what HAPPENED