Hi I am really concerned as my Plasma Homocysteine level is 30 (normal reference range is 0-15). In March 2019 it was flagged up as 17 but its rising!
I have had issues with Folate deficiency for over a year now - last blood test 2.0ug/L ( normal ref range 3.9-26.8).
I was referred to Gastroenterology who found no issues with camera investigations of my gut and biopsies of colon etc..
I have been told that I do not have a B12 deficiency or a functional B12 deficiency as my Methylmalonic Acid is at a normal level.
I have also had issues with my Inorganic Phosphate levels - deficient for around a year. Latest blood test - 0.70mmol/L (normal range 0.81-1.45)
I eat a mainly veg diet with fish & chicken occasionally.
I am concerned as no one seems to be able to get to the bottom of what is wrong.
I have suffered with Chronic fatigue for the last couple of years, and in 2018 was diagnosed with a pituitary tumor which I am on medication for (bromocriptine started 15/12/19). All my hormones had fallen below the normal range DHEA / Testosterone / Free Androgen Index, and upon investigation (MRI) they found a micro adenoma (Pituitary Tumor- benign).
I also have primary Lymphedema in my legs, and my lymphatic system is sluggish in legs. I had blue dye injected and 12% of the dye should have reached my lymph nodes within 2 hours. Only 1% reached the lymph nodes in both arms.
I have daily nose bleeds from my left nostril. Had an operation due to mucosal thickening & enlarged turbinate in May 2019. I also had a vessel cauterised. The blood seems to be coming from behind the turbinate (lump inside nose).
I also have daily visual disturbance from my left eye - white lights floating up left corner of eye. Ophthalmology could not find the cause. They did so many tests so I can’t accuse them of not being thorough. I have notices that this happens shortly after eating?
I also have developed memory problems. Sitting in the passenger side of the car when I am the driver for example. Calling people by my name. Forgetting where I am going when I have at off on a journey. Not recognising people I was in a meeting with for hours the day before? Neurology identified memory issues but no nerve cause in the brain.
I am 46 and I am not even peri menopausal. (Tests confirm this) So not sure what is going on.
I have started a dose of daily folic acid, but when I come off it my folate drops immediately. I am taking daily Vit D due to being deficient. It was recommended that I also take Iron but due to my IBS I got constipated so stopped this!
I just feel terrible. Any advice??
My GP seems baffled, bless her and she just keeps referring me to all different specialists! I am worried about the cardiovascular risks as I have high blood pressure on and off & had slightly elevated Troponin T level in November of 13
Any advice / thoughts would be greatly appreciated!
Wendy
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Sparkle44
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Folate is important in many areas, especially the manufacture and regulation of DNA. So the symptoms of a folate deficiency can be quite varied. It will also cause hCys levels to rise and high hCys is associated with many problems, especially cardiovascular.
I would have thought you have plenty of folate in your diet. If folic acid increases your blood levels, and they drop when you stop taking the supplements then it sounds like you may have a problem absorbing folate from food, but not from supplements.
The sudden drop isn’t that surprising as the body stores very little folate, so blood levels vary with the amount absorbed.
There is a possible explanation for this. Folate in food comes bound to multiple molecules of glutamic acid (or glutamate). These glutamate groups must be removed by pancreatic proteases before the folate can be absorbed. It could be that you are not producing effective amounts of a fully-functioning proteases.
If this is the case then taking regular folate supplements should keep your levels high. Just to be sure I would take methylfolate instead of folic acid. A very few people find this is better than folic acid and you really want to be certain that you’ve fixed any possible folate problem.
For my sight you have severe deficiency in vitamin b1, b6. This is why your homocysteine level so high. Probably you have now something like wet beriberi syndrome. You must start to take vitamin b1 in dose at least 50 mg at day. Consult with your doctor, by the way thiamine levels are often false normal. So you better to start thiamine (b1) right now.
she wrote she has chicken and fish very rare as I understand. Beriberi syndrome can mimic many diseases, but fortunately going away in hours after thiamine administration, so it is not hard to check that theory.
Healingnow777 and Sparkle44 . For clarification...
It's not possible to diagnose either either vitamin B1 or vitamin B6 deficiency from a virtual conversation in a forum. And it's not appropriate to insist that someone starts any vitamin mineral or supplement 'right now'.
Indeed, the idea that wet beriberi syndrome is the cause is highly unlikely. It's virtually unheard of in the western world and in addition a vegetarian diet is typically high in vitamin B1!
Sparkle 44 - also please be aware that supplementing with vitamin B6 if you don't need it can cause neurotoxicity and potentially irreversible neurological damage (if over-supplementation continues). Indeed, we often hear here from people who have taken supplements that they really don't need - and suffered ill effects because of it. And we're all different - doses of supplements that suit one individual won't necessarily be right for another. It's never a good idea to take any supplement on a 'just-in-case' basis.
The best way and only way to find out if you have any vitamin deficiencies is to ask your GP to test you for them. If your GP won't oblige, there are many private testing companies who offer these tests (some are more expensive than others, so worth shopping around if you go down this route).
Hi, my heart goes out to you. I would try taking the advice of healingnow777 and supplement with B1 and 6. And Fbirders advice to take methylfolate. Folic acid if prescribed by GP is lab created as far as I am aware. Folate is natural which the body recognises (has a hard time with lab created cheaper vitamins/supplements) Amrita.co.uk sell 'Seeking Health' range of supplements - these are created by Dr Ben Lynch the Methyl /MTHFR expert. You will get methyl folate and other good supplements from there.
Not absorbing folate is usually a signal to a GP that you are not absorbing nutrients especially if eating enough foliage (folate) Autoimmune attack of villi (responsible for absorption of nutrients) is likely (Coeliac) whether or not you have had negative results from endoscopy. It is known by Functional Medical Doctors that 70% of results are false negatives. There are 60 known Gluten proteins and NHS test for 2. I heard Professr Marsh speaking in interview AKA the Marsh test stage 1,2,3,4 state that the test was never intended to be definitive. Determine re symptoms.
The intestines , are they the length of a football pitch. Highly unlikely that any damage will be seen by chance of locating in an endoscopy, unless there is extensive damage. It seems you are negative until the damage has got so extensive that it can be found. There is a better private blood test now . Cyrex Labs in London but would set you back around £1,000
Better to stop eating gluten and ALL grains for a min of 60days - or if you value your health, like me for life. My mum had 3 negative endoscopies over the years for coeliac diagnosis, ended up almost dying of malnutrition in the isolation/ infectious diseases wing of the hospital before diagnosed with coeliac. Became healthy on a GF diet
But you have to remember there is autoimmune attack of the intestines caused by gluten and also Non Coeliac Gluten Sensitivity, which means no digestive symptoms but autoimmune attack of any organ including the brain. Dr Tom O'Bryan recognised as a foremost expert on gluten and autoimmune states that if when Coeliac was first recognised , if the med professionals could get into the brain as easily as the digestive tract , that coeliac would be known as a brain disease. Please listen to any you tube video that you can find, interviewing Dr Tom O'Bryan. He organised the Gluten Summit a few years ago, interviewing 29 experts in the field. This may now be available on you tube. Please note HLA DQ2 & 8 are prevalent genes indicating Coeliac but HLA DQ 1 & 3 are more prevalent in Non Coeliac Gluten Sensitivity.
A low saturated fat diet has been found not to be conducive to brain health (and not a trigger for heart disease - read British GP/cardiology specialist Dr Malcolm Kendrick's book, 'The Great Cholesterol Con' written 2007 - yes known about and published in medical journals since then.) Polyunsaturated bottled oils are known to be inflammatory in the body as they cause inflammation. Inflammation is known to be the major cause of heart disease and brain health issues. Along with the eating of wheat (irrespective of gluten issues or not)- wheat contains the protein WGA which damages the brain and is addictive - simlar to heroin, which is why food producers use wheat protein in any and every product these days so you keep buying their products.
We need a healthy omega 3 /6 balance. Oily fish such as wild salmon will provide omega 3 (look at the labels - most salmon is farmed so toxic to the brain, choose wild Alaskan or Pacific even Scottish is farmed but Chicken is the worst food of all meats, even if organic free range re it's omega 6 content. And they suffer from being raised in appalling conditions, unless you know the farmer Meat raised in a healthy environment from grass fed herds of beef will provide better nutrition ALA instead of LA, B12 , iron etc. Which means going to farmers markets where you can speak to the farmer.
All food should be organic as the herbicides and pesticides are similar to antibiotics and will devastate your gut microbiome and mitochondria. As we are dependant on our microbiome for a healthy life, this is critical. Our microbiome organisms signal/messages our brain cells , this communication also is ongoing between our mitochondria, many hundreds and 1,000s in all of our cells (excepting blood cells) our genes, the genes of the mitochondria and microbiata. One of the roles of our mitochondria is to produce energy/ATP for the cell which is why heart , brain, and eye cells have 1,000s more mitochondria in each cell due to the energy required by the organ.
Movement and exercise is a lifestyle requirement to enable the production of BDNF
Brain Derived Neuro Factor. But not so it exhausts the body.
If you have suffered or suffer from fatigue please look at the work of Nicki Gratrix and the effect on our mitchondria in the 'Cell Danger Response' the website Healthmeans has her recent interview from the Mitochondrial Summit as a download for 2 dollars. The Mitochondrial Summit was organised by Jay Davidson to provide access to the knowledge from some of the leading experts in the field. Please see my post Saturday on HU, Mitochondria and our energy
The Public Health Collaboration is a collaboration of British GP's and Health Professionals who have just held their conference in Oct 2019 in London. The presentations are well worth watching on you tube. I believe their first conference was held in 2017 and all conference videos are there on their website. Diet and sugar is a constant with their ethos, wanting the Govt food guidelines to be reviewed/overturned. Remember any flour products made from grains or starchy veg, so bread, pasta rice etc will spike blood sugar. High sugar is not good for brain health or for achieving a healthy gut microbiome.
Also re Homocysteine - a healthy , optimum range is 6-7 (ignore normal ranges - they are just average. 30 needs to be brought down, signifies brain inflammation. You must google
Food for the Brain homocysteine, his will bring you to the right page. Lots of info on the site re homocysteine and what supplements to take to bring homocysteine levels down.
Vitamin B12 is implicated because vit B12 converts homocysteine back into methionine. Checking homocysteine levels is a good way to also know if B12 is getting into cells. Even if it is high in the bood it doesn't mean it is getting into the cells.
It is considered that anyone who has a health condition/concern should get their vit D level up to 150mmol/L. Take vit D3 drops that contain at least 2000iu per drop, so much easier to get your D level up. We need vit D everyday, so need to supplement 2-4000iu per day if have good healthy levels above 125mmol/L. Much more 10,000iu or more to get levels up and re test in 3 months. The vit D the immune system and organs use, does not go to the liver to be bound (as with bone health) but is diffused directly into the cells. Which is why you need everyday - has a 24hour half life. See Dr Hollis (30yr+ research on vit D) you tube video on dosing requirements. With vit D, get your GP to check your calcium levels are ok , to rule out any malfunction with vit D there. And must take vit K2.
Vitamin K2 (this is not K1, your GP prob never heard of as only discovered as a separate vitamin with different function from K1 in the 1990's) Vit K2 is also essential for heart and brain health 100-200mcg perday.
I sincerely hope that you will look into some of this x
Methylfolate is synthetic. Indeed, it is manufactured by the reduction and methylation of folic acid.
The stuff sold by med school dropout Ben Lynch is made in a laboratory. Said med school dropout is responsible for much of the complete garbage spattered over the interwebs about folic acid, folate and MTHFR - all in an attempt to sell his overpriced supplements, his books and his speaking tours.
"Based on the existing data, scientists at 23andMe have concluded that people should not interpret their genotypes at the common MTHFR variants as having an effect on their health"
There is no such thing as non-coeliac gluten sensitivity. When people who claim to suffer from this are given snack bars with, or without, gluten there is little difference in their response (in fact those eating the gluten-free bar had slightly worse symptoms). When they were fed bars containing FODMAPs then they had many more symptoms. gastroenterologyandhepatolo...
"A similar lack of gluten specificity in the induction of symptoms in the vast majority of patients with self-reported NCGS has also been observed in 3 other randomized studies,32-34 indicating that gluten is seldom the dietary culprit."
"The intestines , are they the length of a football pitch. Highly unlikely that any damage will be seen by chance of locating in an endoscopy,"
Except that coeliac disease manifests in the duodenum - the first 12 inches of the small intestine, which is easily examined during a gastroscopy (I know, they looked at mine).
Somebody else recently commented about 'Functional' medicine. I'll look up their post.
I can assure you that Professor David Sanders who is the Gastro at our local hospital and has won medical accalaide throughout Europe for his research and research team, gave me photocopies of his published 'Papers' years ago. He has since written a book on this very matter. Professor Alesio Fassano working on Research at Harvard discovered the connection between Gluten, the existence and production of Zonulin and autoimmune disease throughout the body. Dr Datis Kharrazian's work with molecular mimicry with how proteins in food closely resemble proteins in the body eg brain tissue, thyroid tissue and if these food proteins get though the intestinal lining via relaxation of the tight junctions (intestinal permeability also known as leaky gut) provoked by damage caused by Gluten amongst other contributors, for instance an unbalanced microbiome with an excess of LPS (gram negative bacteria) medications, toxins then this can initiate autoimmune attack on our own tissue.
Dr Daniel Nuzum (holding seven doctorates) has explained the science behind how our mitochondria will fail dependant on the cellular environment we provide. The intracellular communication explains epigenetic effects (the switching on and off of gene function) Gene mutations like MTHFR can be determined by cellular health, aka mitochondrial health. If we have provided an inhospitable environment for our mitochondria to thrive, it is the cellular environment that we need to clean up not worry about the genes
Just a point, I didn't say methyl folate was natural, just that folate is the naural form from green veg, foliage. That the body has a harder time with lab created vitamins but needs must, quality is important therefore.
I listened to Ben Lynch years ago before he ever introduced his supplement line. There is no doubt he has expert knowledge about methylation and as research has uncovered further insight he has not been afraid to change his opinion. And I would rather purchase and recommend a supplement with such expertise backing. I was just aluding to his knowledge of methylation function/ mentioning MTHFR was intentional as many people have heard of re the prevalence of gene testing. I appreciate that many more people are known to have the gene mutation than not. The point was, I was recommending where a good supplement could be purchased in order to help. As information can leave one floundering without being pointed in the right direction.
Have you any recommendations as to which supplement would be better? I really cannot see why you have to be so critical and disdainful of Ben Lynch, if you personally have more knowlegeable research in this field then please detail.
I would suggest to Sparkle 44 that Chris Kresser's article Folate V Folic Acid is studied. He appears to feel that folic acid as such could be dertrimental to some folk even carcinogenic. Whats the point risking that when folate/methyl folate will work equally well if absortion is not the issue. I notice you put just about everybody is ok with folic acid, that leaves some folk that aren't.
There is a view that rather than having issues with Gluten as such, that Glyphosate poisoning (sprayed on grains) since the 1970's could be causal. As it is very unlikely that Monsanto Bayer are about to conduct any studies any time soon, it is rather a mute point and anyone with any gut, brain and thyroid issues , along with anyone with chronic health issues would do well to remove gluten and all grains from their diet for at least 60 days to see if they noticed any difference in symptoms. Which is what I was suggesting
I was just trying to suggest many approaches that could indeed make a difference to Sparkle's health which she could investigate if wished. Providing information that cutting edge medical science is discovering re the importance of mitochondrial health amongst other things. Mitochondrial health impacts all health situations including brain health and all energy issues which sparkle was alluding to as a big problem.
Fbirder, really I wished I hadn't mentioned Ben Lynch (I appreciate you have something against him from previous posts) But he has nothing to do with the substance of my reply . I stand by all the info in my reply . Ben Lynch was only mentioned because I know of and take methyl B12 from his supplement range and therefore know he provides methyl forms and where to get them from in the UK. Helping direct someone to where they can obtain is sometimes helpful otherwise so much can be overwhelming. You yourself recommende Methyl folate.
Methyl folate maybe lab created as opposed to eating loads of natural forms in green veg, but for peope who may be having problems it is often better to take a methyl form as easier for the body to assimilate as pre converted. So published papers of Ben Lynch in peer reviewed journals is neither here nor there with the substance of my reply
Has anybody? I have no idea . Wheat is a fodmap anyway, so what you are saying is that other foods , that is other fodmaps apart from wheat may be implicated - well so they might. which is why it is seen as sensible to exclude all grains not just the accepted gluten grains , wheat barley and rye. Monitor symptoms and taking into account, intestinal permeability and any molecular mimicry symptoms from food proteins from any other foods including fodmaps that may have got through and triggered the immune system and the balance of the microbiome. Which is exactly why in my long post I took time to highlight all such possibilities.
While I accept fodmap inclusion, normally fodmaps are found to be causal with an unbalanced microbiome , often SIBO and even more often symptoms of digestive distress caused by bloating. As NCGS does not usually cause digestive issues as it triggers autoimmune attack on tissue/organs other than the intestinal villi, I do not see your point. And Sparkle amidst listing numerous symptoms did not mention digestive distress/ symptoms and seemed more concerned with brain function which would immediately make one focus on Non Coeliac Gluten Sensitivity autoimmune attack of tissue rather than my dwelling on fodmaps
I have just now simply googled fasano zonulin and autoimmune in order to answer your question and this scientific publication came up. As this information includes the gluten connection, I will post to answeryou. No doubt you can search pub med studies yourself to find many others
LynneG. Please see my advice to Healingnow777 and Sparkle44 , in a reply above.
Sparkle44...please continue with whatever vitamin D regime your GP has prescribed. Please be aware that over-supplementation with vitamin D can cause vitamin D toxicity.
Please also note that taking vitamin K in any form is contraindicated if taking 'blood thinners' (warfarin etc.,), or if there is a history of blood disorders, strokes, and certain heart conditions (amongst other things,).
Please always check out contraindications when considering taking any supplements or herbal remedies and keep in mind that many of these also react with a wide range of medications (some of the contraindications can be quite surprising when you look them up).
Vitamin K2 is a fat soluble vitamin along with A, D and E that triggers enzymatic function that escorts calcium to bones and teeth , where calcium should be, rather than without gravitate to the easier path of soft tissue. Vit K2 deficiency is associated with hardening of the arteries and muscles. Vit K2 is made by bacterial fermentation, so found in high fat dairy such as hard cheeses dependant on the specific bacteria introduced. Possibly made by specific bacteria in the gut microbiome and that of the animal , hence being in animal fat. As far as my knowledge goes, there is no connection with blood thinning. Info book, The Calcium Paradox: the little known vitamin that could save your life', author K Rheaume Bleue
Problems with vit D and parathyroid gland dysfunction would be highlighted with serum calcium levels. The Vitamin D Research Council have listed optimum serum levels to achieve to protect against various diseases as per their research. From their advice 150mmol/L is not a toxic level. Under Rheumatology - they were the first to test my vit D levels. I started to supplement turmeric at a high dose on advice and this included vit D. My Serum vitamin D rose to 260+ by mistake which did not alarm my rheumatologist , she just advised that I stop supplementing for a while until it had come down to around 130/125 mmol/L - no panic, no fear of toxicity at the raised level.
Please note the US measurement is in ng mmol/L needs to be x2.5. Therefore equivalant of US 60 ng is 150 mmol/L. Please see this article re vit D toxicity grassrootshealth.net/docume...
I wasn't debating your vitamin D levels or the properties of vitamin K but rather flagging to Sparkle44 that there are contraindications and the potential for over supplementation with the vitamins and minerals she was being advised to take (hence the advice that taking vitamins that are not needed or indeed over-supplementing can cause problems (I.e. contraindications for vitamin K and underlying health conditions and the potential toxicity of victim D).
Many sites on the internet are very good at telling folks what supplements they should be taking. But many rarely point out potential contraindications in terms of issues when there are underlying health conditions, problems with interactions with other medications...or issues to do with over supplementation. This is especially relevant where sites are selling supplements!
With the advent of the online harms regulations (which will be relevant to fora like this), these issues may become more contentious. Those who actively tell people what supplements and doses to take may be held accountable and potentially liable if anyone comes to harm through following that advice (i.e. also consider potential allergic reaction to excipients etc.).
Flagging up potential issues to forum members is for the protection of all!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Why is homocysteine low with B12 deficiency?
Can high B12 levels actually turn out to be B12 deficiency.
Re: high Folate levels & diminished returns from b12
Severe folate deficiency 
