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Pernicious Anaemia Society
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Permanent damage from PA?

Hi all yesterday I got a 3rd opinion at a neurologist for neurological issues that I’ve had for a long while now. I was diagnosed with PA in 2016 I had to argue with my hemotologist for a long time for injections which I was able to get in August of 2017. The reason for this is because I live in the US and they think the B12 pills are adequate. I’ve had a lot of the classic neurological symptoms of MS and my 2nd opinion doctor thought I may have had it as well but no lesions showed on brain scan. These are rapidly declining vision, tingling in feet, twitching in left eye (for a year now nonstop), lightheadedness and balance issues, and very poor memory with extreme fatigue. Quick side question — is rapidly declining vision a symptom of PA? Anyway, my 3rd opinion yesterday at a very reputable place thinks it is all permenant damage from my PA. I’ve been SI since August of 2017 once a month until about 6 months ago I bought more B12 so I could SI every few days. Nothing has helped my symptoms and I’m wondering how much damage I actually have from this condition or if I still have another undiagnosed condition. I can’t imagine walking around with very unsteady gait (so much so that I need a cane or walker) for the rest of my life, I just turned 33. I’m unable to work and do my daily obligations because of this. Are there any tests that I could ask for that may check for permanent damage? Any advice would be appreciated. Thanks!

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Hi yogamom1 I'm sorry to read of the problems you are having getting the correct treatment for your Pernicious Anaemia.

Do you know what your Folate level is?

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I wonder if you've chanced to see the Sally Pacholok "story" - a fellow countryman of yours and a published author.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years and I'm still "clivealive" aged 77.

I wish you well.

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Thank you very much Clive. I don’t supplement folic acid, but every time levels are checked it’s always high. Someone told me it was because my diet is primarily plant based. Any insight on this? If folate is already high do I need to supplement folic acid?

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If (as it seems) you are able to absorb folate from vegetables in your diet then you don't need to supplement with folic acid.

Take care now and I hope you see some improvement soon.

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At last got to watch video you posted. Sally Pacholok. Very interesting thank you. Off to surgery for next injection now. Bad fatigue again so hoping every other day will keep giving me improvements.

Hoping you have a good day

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It may be high because you are not absorbing the Folate you are eating or taking. In this case you would need a different form (methylfolate). Or methyltetrahydrofolate. Ref mthfr.net

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Thank you very much for this info annkapp! I didn’t know about this. I have not been tested for mthfr yet and trying to find out how to get tested for it. Do you have the direct link for the bit on folate? I’d like to read more on this, thanks so much!

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Besides sifting through Ben Lynch's website (www.MTHFR.NET) I suggest you listen to some of Dr. Stewarts Podcasts / google coffee with dr. Stewart (specifically season 1, episode 2 on MTHFR). coffeewithdrstewart.podbean...

In this podcast he speaks mostly about how B9/ folate deficiencies effect people with ADD/ ADHD/ Anxiety but the thing to know is that B9 is such a critical vitamin and it is central to many, many processes in the body. So, it can cause many, many different symptoms if there is a deficiency. It is very common to have a less than optimum MTHFR gene but may not cause symptoms depending on the severity of the altered gene.

Sidenote: I also should point out that the minerals magnesium and zinc are central to many processes in the body as well. So you may want to look into this as well.

I suggest for this you do HTMA (hair testing mineral analysis) and have your results read by a practitioner expert in doing HTMA. This would be for all minerals including some toxic metals.

The most cost effective way of testing for the MTHFR gene (for folate methylation) is through www.23andme DNA genetic testing. 23andme gives tests for way more that just the B9 processing enzyme (MTHFR) which makes it even more cost effective. 23andme costs about $199 (in the U.S.) but I have heard you also get the raw data if you order the $99 Kit for ancestry Testing too.

The thing to know is that when you get the results you must search for the "raw data" which contains the genetic test results. This raw data is not readable until you run it through a program such as www.Livewello to make it readable. Livewello costs $19.92 (in the US).

Here are some brief instructions to use once you get your 23andme results back.

In the 23andMe website, download all the raw data to your computer. You will see a txt file.

I think the link below brings you directly to the page to upload your raw 23andme data. If not, go to the Livewello.com website and click on the genetics tab and then select genetics tools.

//livewello.com/23andMe

What you want to select once in the Livewello is the standard Gene Report.

a plus/ minus means a partial abnormality in the gene / enzymes for breaking down/ methylating in this case folate. A minus/ minus means it is good - no problem. A plus/ plus means there is a significant reduction in the gene (enzyme).

There is more research that has been done on the C677T than the A129C type.

The C677T happens to be tied to heart problems but the A1298C is not.

MTHFR A1298C rs1801131. G. GT +/-

MTHFR C677T rs1801133 A. GG -/-

Note there are other gene that effect the breakdown of B9, not just the MTHFR.

So even if this is good you may have another gene problem effecting it. For me, it is the gene that assists in delivering the B9 into the cell/ mitochondria (SLC19A1 rs1051266 in which I am +/+ or 60% reduction).

You could also just try a different B9 (or magnesium, zinc) for a few weeks to see if it is helpful in anyway. I have tried Neurobiologix B9 products (Methylfolate Plus) and have benefited. (There are also B12 creams/ Neuroimmune stabilizer or methylation Pro Topical). You could also look for other brands with similar ingredients the primary of which should be L-5-MTHF or 5-MTHF or L-MTHF (MTHF = methyltetrahydrofolate). Note some products have folinic acid which is one step above MTHF type which I cannot tolerate a lot of because I cannot breakdown even this form. Note that you DO NOT want to take folic acid because it is a synthetic type which is not entirely understood how it effects the body. To long to explain.

Magnesium try magnesium glycinate (at bedtime) or magnesium malate (daytime).

Try taking about 300- 400 mg/ day in divided doses. They call magnesium the mother of all minerals for a reason.

Zinc must be more careful because it must be balanced with copper and you can't take too much or it could become toxic.

Hope this is not too much information. Good luck! Let me know if you have any other questions especially on the DNA data.

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Thanks very much for all the info! Lots of things for me to look into that I’ve never considered in the past. I took zinc in the past on its own (directed by my doctor) because it was low before but after I learned of the balance with copper I stopped taking it. I had my 23andme done a little over a year ago but didn’t see anything on there about MTHFR gene and am a little confused on how to go about obtaining that info because I’m definitely interested, if it’s atill available through their website.

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Try figuring how to get to your raw data and how to download to your computer using instructions in this link

dnaadoption.com/uploads/DNA...

It includes instructions for old 23andme or new 23andme. Follow my earlier instructions on using Livewello once you get your raw data downloaded.

Please reply back to me once you have done all this and have your results. There are actually 7 steps (7 genes) needed in the breakdown (methylation) of B9. That is why so many people have a problem with B9-

because there are so many steps and places to have a faulty gene effect it.

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Yogamom 1 I suggest you upload your 23and Me results on Promethease. There is a small fee but you will receive lots of interesting health information.

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Hi, I finally got around to uploading my raw data from 23andme to promethease. I had several concerning things in my report but I did notice that MTHFR had a result of "bad repute". I'm having trouble interpreting all my results and i'm trying to figure how how I can upload the screenshot I took of my result so that I can show what it says. For now I'm copy and pasting what it says and maybe you or someone here can help me interpret it a bit better. I'm not sure if you would if any other info is needed to interpret this. Below you will see that it says orientation=minus as well as stabilized=minus. The result for rs1801133(C;T) on my report was highlighted red on my report with bad repute.

Folic acid processing; homocysteine levels

Orientationminus

Stabilizedminus

GenoMagSummary

(C;C)0Common genotype: normal homocysteine levels

*These two below were highlighted in red.*

(C;T)2.21 copy of C677T allele of MTHFR = 65% efficiency in processing folic acid

(T;T)2.8homozygous for C677T of MTHFR = 10-20% efficiency in processing folic acid = high homocysteine, low B12 and folate levels

Thank you in advance if anyone can help me with this.

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I do not know how to interpret the results from Promethease. (For instance, I do not understand why you two lines of info for MTHFR C677T.)

Promethease may be less expensive and offer a lot of information but I have read it is more useful for be someone with genetic experience. Livewello is much more user-friendly. This is an example of what part of a Livewello (Detox) report looks like.

wellnessthroughfood.com/wp-...

You can also get some free methylation information from genetic genie. It is not as complete as Livewello but it does offer user-friendly explanations to go with the report and the report layout is similar to Livewello.

For $19.95 Livewello gives you these reports:

Allergy

Cleft Lip/ Cleft Palate

Clotting Factors

Detox

Gluten Intolerance

IGA

IGE (allergies / antibodies)

IGG

Methylation (2.5 pages of snips)

Mitochondrial Function

Other Immune Factors

Sulfotransferase

Thyroid

You can get some good explanation of the basics of reading a Livewello or genetic genie type report and the different programs that crunch the 23andme raw data at this website.

wellnessthroughfood.com/mis...

If you do get the Livewello report: These are the snips I was told by a genetic expert that are most important in the Folic Acid Methylation Pathway.

FOLR1/ FOLR2 are important to look at if you are planning on having kids. This is the second most important snip for folic acid methylation)

(about 20% reduction if +/- or heterozygous, about 40% reduction if +/+ or homozygous)

DHFR about 10%/ 20% reduction

MTHFD1 about 10%/20% reduction.

MTHFD1L about 10%/20% reduction

MTHFS about 30%/ 60%. reduction

MTHFR (This is the most important snip)

C677T is about 40%/ 70% reduction

A1298C is about 10%/ 20% reduction

Another consideration is if the methylfolate can get into the cell.

SLC19A1 (+/-) equals about 25% reduction of delivery of methylfolate into the Mitochondria (+/+) equals about 50% reduction.

Note that the results are cumulative.

So if you were heterozygous (+/-) for DHFR and homozygous for MTHFR A1298C and heterozygous (+/-) for SLC19A1 the calculation would be:

100% to start x .90 = 90%

90% x .80 = 72%

72% x .75. = 54%. (able to use 54% of the folic acid you ingest).

Remember that these are approximate amounts but should help you to know approximately how well you are able to process the folic acid you ingest.

Vitamin B12 methylation pathway snips. Sorry I don't know as much about these.

MTRR

MTR

GIF

TCN

Hope this helps.

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The only way to tell if any damage is permanent is to wait and see if it gets better. Unfortunately, some nerve damage from PA will never get completely better. Martyn Hooper - chair of the PAS - has had numbness in his legs for a long time.

The good news is that it shouldn't get any worse (unlike some of the alternatives such as MS) and it might improve slowly.

You need to find the right frequency for B12 injections. Look for a highly variable symptom (I used fatigue) and keep a diary as to how that symptoms waxes and wanes compared to injection times. You're looking for a frequency that keeps that symptom at bay with the longest interval between injections.

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Thanks Fbirder for the tips on this! I feel I may need to top up on the B12 again. I wanted to switch to hydroxy b12, any insight on if I would need injections less often on this form of b12 compared to cyano? Do you know anywhere I can purchase it in the states? Thanks!!

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Did you read that she has PA and was prescribed oral B12? That might be grounds for litigation.

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I don’t think litigation would be successful. All the defence would need to show is that some experts say that high-dose oral B12 is a suitable treatment for PA. And there are a few papers that purport to show exactly that.

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Since you are in the USA, you will be on cyano-B12 injections. You need these weekly and high B12 levels in your blood (>1500 pg/ml) to effect significant nerve repair. but nerve repair is slow (months and years).

I was diagnosed 10 years ago in the UK and treated with hydroxo-B12 injections every 3 months. I had to convince my UK GP to increase these to monthly injections.

When I moved to the USA 8 years ago, I was switched to monthly cyano-B12 and had to convince my US GP that I needed weekly injections.

A tool I used was to Start a logbook of all your symptoms and measure your own severity score for each. Give a printed and dated summary sheet of all your symptoms to your GP at each visit and ask for it to be included in your record.

The logbook helped with short term memory loss as I was forgetting how bad a particular symptom was - last week, last month or last year. You will see what treatments are working and what is not. But stick to a treatment for at least a month to monitor progress as some new symptoms, that are similar to your existing symptom do appear following treatment. Anything that gets significantly worse needs to be addressed quickly.

The logbook helps sort out these confusing symptoms if you restart with Day zero at each injection and count up again. This allows you to find the same day in previous cycles to compare your score numbers. You need this because treatment is like a roller coaster ride of varying symptoms.

Like the others have written, you also need to supplement with folic acid (what ever you can tolerate up to 5 mg) and a daily multivitamin to provide the minerals and metals that get consumed by metabolism once you are on injections.

I also supplement with B1 (100 mg) and B6 (100 mg) and TMG (500 mg) from LifeExtension along with 4x 5mg methyl-B12 sublinguals to support the B12. I spread the folic acid (6x 800 mcg) and methyl-b12 throughout the day in three doses.

Stress and worry consume B12 and the logbook gives you some control back so you stop stressing out.

You will seen a repeating pattern of symptoms that follow in sequence over 3 or 4 days after each injection. These are “good” indications that B12 is doing its job. However some of these symptoms, like increased pain, or stomach issues or hunger are counterintuitive but are directly proportional to the nerve repair activity and the level of deficiency you were at before the injection.

The stronger signals on the nerves fromthe repair are initially interpreted by the brain as increased pain. This is an illusion. If you can convince your mind that these are illusions, typically by gentle range of motion exercises or just getting on with the job, you will find that the pain disappears. The brain normally takes about 48 to 72 hours to recalibrate to the stronger signals and stress blocks the recalibration and seems to make these symptoms seem worse.

The stomach and gut issues are due to repair of the vagus nerve and possibility over stimulation from the stronger signals.

Repair of nerve damage is very slow but for me at least, my legs are improving and my unsteady gait is gone. All my balance issues have disappeared and my short term memory is better. Tinnitus and eye issues still come and go each cycle but I see improvements.

You only notice that a symptom was gone when it reappears as you forget to monitor it when it is insignificant. The logbook helps keep track of the disappearing symptoms as well.

For permanent nerve damage you eventually learn coping skills to work around them.

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Very knowledgeable and helpful post...funny how something so simple as keeping a journal of symptoms can help with the big picture, but so many of us fail to think of it. I'm going to start doing this too.

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Thank you very much!! Super helpful post! Quick question — would I need to supplement folic acid if I already have high levels of folate? Someone told me I had high levels because I follow a plant based diet but unsure if this is the case. Any other reason it could be high without supplementation? I want to switch to hydroxy b12 but having difficulty finding somewhere I can purchase in the states with no prescription. I’m also trying to figure out if I’d need injections less or more often compared to cyano. Any insight would be very much appreciated! I’m going to start logging my symptoms today! You have been super helpful, thank you!!😊

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I've found that helpful. I keep a diary and I have forgotten about symptoms until theyou return as so many. I'm on every other day at the moment but hope to discuss with good at some point when I think light no further improvement to not have the sudden jump to 2 monthly

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Errors . Discuss with G.p

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Hi yogamom, I live in the US and I get methylcolbamin B12 from my naturopath. She said for neurologic symptoms it is the best form. It has worked great for me and my neurologic symptoms. I self inject every other day for 7 weeks now. Seen tremendous improvement. I even had blurry vision pretty bad like you and that has slowly improved over time and my eyesight is great now.

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Thank you very much for the info. I will look into this. Ufortunately though, there aren’t any naturopaths near me so I’ve found it difficult to try to get in to see one.

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A conventional doctor might too... you just have to find the right one. It might take some trial and error before you find one who is willing to prescribe what you need. Mine pretty much let’s me call the shots. When I felt I needed to increase my injections she didn’t blink an eye and gave me more.

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Find a compounding pharmacy, online or within your state. My doctors office orders the Methylcobalamin from a pharmacy that does compound drugs and I pay for and pick it up from the receptionist at my doctor office. If your Dr's office is unwilling to do that your doctor will have to write you a prescription and you will have to call around to find a reputable Pharmacy that does compound drugs, specifically Methylcob. injections. Not all compound pharmacies make MC Injections. Sadly, because Methylcobalamin is not a FDA approved drug it is not covered by insurance nor is the quality of the injection regulated. So due diligence is needed. Shop around.

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Thanks very much! Calling the compounding pharmacy tomorrow about this.

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Hello, i had vision problems while deficient. It slowly improved and as far as i can tell is back to "normal". I think it took a few months for eyes to heal.

I am in the US also. I can get a cyano jab at a medspa (people get injections for weight loss), a methyl jab at a lab testing facility or any of the 3 forms from my naturopath's office. Gosh, i see b12 happy hour (certain times for discounted rates) advertised nearby too. So you may have something besides a traditional med clinic near you. For SI, i found hydroxy in Australia that i could order. I have not done that as i can't be sure of how it is stored during such a long shipment. There is an online pharmacy i think it's out of Texas. They have methylcobalamin for SI. I can'rlt remember the name of it, I'm sorry! It is a sort of fitness oriented medical facility i think.

Good luck!

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I asked my optician about whether my deteriorating vision (especially at night) could be due to my B12 deficiency. He showed me what that would look like, then did an eye test that included looking specifically for the results of B12 deficiency: luckily they weren't there, but it is now on my notes and will have the test repeated. Worth asking for peace of mind.

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Thank you! I didn't know there was a test for this pertaining to B12 deficiency. I'm not sure anything would show up for me since I've been on injections for about 1 1/2 years but worth checking out. I will ask my eye doc about this. Thanks!

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Hi, all. Someone above suggested I upload my raw data from 23andme to promethease. I had several concerning things in my report but I did notice that MTHFR had a result of "bad repute". I'm having trouble interpreting all my results and i'm trying to figure how how I can upload the screenshot I took of my result so that I can show what it says. For now I'm copy and pasting what it says and maybe you or someone here can help me interpret it a bit better. I'm not sure if you would if any other info is needed to interpret this. Below you will see that it says orientation=minus as well as stabilized=minus. The result for rs1801133(C;T) on my report was highlighted red on my report with bad repute.

Folic acid processing; homocysteine levels

Orientationminus

Stabilizedminus

GenoMagSummary

(C;C)0Common genotype: normal homocysteine levels

*These two below were highlighted in red.*

(C;T)2.21 copy of C677T allele of MTHFR = 65% efficiency in processing folic acid

(T;T)2.8homozygous for C677T of MTHFR = 10-20% efficiency in processing folic acid = high homocysteine, low B12 and folate levels

Thank you in advance if anyone can help me with this.

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