B12 deficiency and eye problems - Pernicious Anaemi...

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B12 deficiency and eye problems

beginner1
beginner1
33 Replies

I found this in The Times this morning and thought it would be of interest to those with eye problems. You may have to enlarge to read it.

33 Replies
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lownskater52

I saw this too. This kid is definitely suffering from low stomach acid after years of a horrific diet.

Didnt the UK have the chicken tender girl that only ate McDonald's chicken tenders her entire life? I'm in the US and we dont have much room to talk but what is going on over there?

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wedgewood

Thank you very much beginner1. It also makes one wonder how much meat actually goes into some sausages ,as in my newspaper, it stated that the lad’s only source of B12 was sausages . Very sad for that unfortunate boy . Nutrition and cookery should be important school subjects . But Jamie Oliver didn’t have much success with school meal improvement inspite of the excellent effort that he put in . Food for thought .

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beginner1
beginner1
in reply to wedgewood

My eye people has never suggested that my double vision may have been caused by B12 Deficiency. I must check if it is on the PA symptom list.

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Gunj_redjem

What did u do for double vision mine is not sorted after treatment..pls suggest

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beginner1

My double vision is still with me. They tried Botox, which only worked for a very short time, and have no more ideas.

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j-mobe
j-mobe
in reply to beginner1

Mine improved with B12 buts still had some issues. The vision issues can also be a symptom of B1 deficiency which seems to be rarely mentioned - but I believe that many of us here have other absorption problems besides B12.

Lately I've been adding B1 + magnesium + folinic acid - which also seems to help. The magnesium helps with cellular uptake of B1 and the folate/folinic helps with absorption.

I take folinic acid because I am +/- on COMT-V158M and don't tolerate folic acid or methylfolate well.

Here are a couple articles that discuss B1 as the magnesium and folate connections.

sciencedaily.com/releases/2...

wellnessresources.com/news/...

n.neurology.org/content/fol...

I feel much more energized now as well - I felt before like I just couldn't get enough electrolytes (always thirsty) and that carbohydrates only made me tired, never gave me any energy.

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Gronny
Gronny
in reply to beginner1

Sure my double vision was caused by my PA ! Haven’t had it for a while now though

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Alfabeta
Alfabeta
in reply to beginner1

Blurred vision is a b12d symptom.

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fbirder
fbirder
in reply to wedgewood

He ate processed meat 'rarely'.

My guess is that it was not just a B12 deficiency.

theguardian.com/lifeandstyl...

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JanD236
JanD236
in reply to fbirder

An interview with an ‘expert’ today said that it would be lack of vitamin A in his diet that would have caused the sight problems.

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helvella

Have to say, I feel lucky after reading that story (which has appeared in several other places today).

There are some things I simply cannot eat - such as egg white (as in boiled eggs). Unutterably horrible texture. Though I like meringue (despite the gross excess of sugar). I was pretty darned awkward as a child. Smell also makes many things unapproachable.

Perhaps it wouldn't have taken that much for me to go down the slope of worsening nutrition and intensified pickiness?

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beginner1

I eat everything, liver, kidneys, calamari, cheese, eggs - the only thing I don't eat is okra. It has always been meat or fish plus vegetables every day. How have I ended up with severe B12 deficiency that GP's won't treat.

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Nackapan
Nackapan
in reply to beginner1

Same here excellent diet. As a child and adult. Then the menopause hit and my body just didn't function as well . I have got treatment though. Why no treatment? I had to fight for alternate days to restart. And then more frequent injections . But no treatment is appalling

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MoKayD
MoKayD
in reply to Nackapan

My B12 issues also seem to have started with menopause and after my gallbladder was removed. I truly believe the gallbladder removal either caused, or contributed to, my B12 deficiency.

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j-mobe
j-mobe
in reply to MoKayD

I had severe gallbladder pain intermittently before starting B12. Minimal since. It may have been an earlier symptom, not a cause.

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Nackapan
Nackapan
in reply to MoKayD

Well it probably did then. Yes my body just less efficient after the menopause. as although I had alot alot of stress with ongoing health problems from 3 family members that had been going on for years. I also think my bad fall in the mix (probably caused by B12 dropping! ) just didn't imagine I still wouldn't be able to function at an acceptable level nearly a year later.

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beginner1

I had 5 loading then retest. We don't follow the NHS Guidelines in Gloucestershire. But don't worry I made other arrangements, and get as much B12 as I think I need.

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Midnight_Voice

I have it on very good authority that the Gloucestershire guidelines were revised in 2014, and are based on the (rather superior) BCSH recommendations.

But no-one seems to have communicated this to Gloucestershire practices :-(

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sanstarr

I'm Gloucestershire too & can't get my gp to give more b12. Currently on 10weekly. My eyes were perfect vision until a year ago & very suddenly have needed varifocals.. I've been PA for about 20yrs, I'm now thinking this eye change is down to this?? :( also recently had a blind spot in my vision, only lasted about 20 mins but had it twice now.. Really scary

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beginner1

I would like to see them (The Glos, Guidelines) do you have a link or can you get one to them. It would be use to show, throw at our GP's. My first visit to my GP was some time after that and as you wrote "no-one seems to have communicated this to Gloucestershire practices"

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Midnight_Voice

I’ve only ever been able to find a link to the 2005 guidelines. I think I will have to write again to get the new ones, and perhaps ask how they have been communicated, if at all, to the practices served.

Certainly, our practice insists on continued blood testing, with no injections if levels are in bounds, which is in flat contradiction to the published BCSH guidelines.

There may be some wiggle room in that ‘based on’, but I can’t really see it applying to this.

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humanbean
humanbean
in reply to beginner1
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beginner1
beginner1
in reply to humanbean

Thanks for trying - I'm almost sure this is the treatment used going by the 2004/5 Guidelines. My GPs were still using these old ones in 2016.

Judging by the number of complaints to this site, of 5 loading inj. then retest (in my case 3 months) and you are now in range so need nothing, Symptoms are completely ignored.

I would love to see the 2014 update and take it to my practice.

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Midnight_Voice

If you follow the link in there to

gloshospitals.nhs.uk/docume...

you will find this is dated 2004, and is flat wrong by today’s standards, for patients who are IFab negative, something which the information in the direct link recognises.

We therefore need to know if the link humanbean gave is a totally out of date reference, or a current reference that tragically and erroneously continues to refer through to outmoded 2004 guidance.

And then, more importantly, if this is the guidance Gloucestershire practices are working from.

Time for me to make a nuisance of myself again.....

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beginner1

Hi Midnight_Voice I do know the 2004 guidelines followed by a 2005 letter cutting out certain tests allowed. What I have been trying to find are the 2014 update you mentioned, but have hit a blank.

Is it possible to go back to your "good authority" and ask how one can find them.

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Midnight_Voice

Next week. Currently, we are on a cruise, with intermittent WiFi depending on what port we put into.

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beginner1

Very jealous I love boats. Have a great time.

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waveylines

What an incredibly sad story...... terrible to loose your sight in this way! And so young and unnecessary! Shocking!

I had blurred and double vision when my b12 deficiency was untreated (amongst a myriad of other symptoms!) for a good year! -with b12 injections these symptoms resolved within a few weeks. My optician at the time said my eyes werent working together, no mention of have you checked your b12 levels? Instead he put a prism in my glasses, helped a bit but ultimately my vision got worse until I started injections. I actually saw two opticians during that period of time......

It was B12deficiency.org assessment sheet that alerted me to the connection.

Ive clearly been very lucky.......as my b12 level was low but in range but alongside all the neurological symptoms I also had, I made the decision to self inject rather than wait for a NHS neurologist to see me 6 months later. The neurologist backed me when I did eventually see him. However if Id left it that long.....

Its scary how much you have to be on your mettle......

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beginner1

You were lucky - my B12 was well below the range plus very bad balance, numb legs and so on. I was lucky too finding this site and a very helpful member, and excellent advice from many people on here.

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momo1948

I had 2 years double vision contant had prisms they didnt work in the long run was under my local hospital eye unit who in the end wanted to botox every 3 months but in the end went to Moorfields 2nd opinion within 5 months i was in had the op no need for long distance glasses anymore and no more double vision.... simple procedure i think it was all related to my PA thyroid probs all came about same time

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waveylines

I think some of the problem is that these things are approached as a seperate condition. I also suffered with incontinence referred to a specialist who was unable to explain why except weak muscles. Exercises didnt resolve it. B12 injections did. B12 deficiency just isnt high enough on their list even though it causes a myriad of problems. Lol...

Am very grateful to this forum & B12 deficiency.org who are all so supportive, knowledgeable and informative. I shudder to think what state Id be in otherwise......

Heres the link to B12d.org symptom checklist. Dr Chandry lists the effects of b12 deficiency on different body systems. He has a section for eyes and ears which describes bluurred and double vision. Ive purchased his book that he's recently published. You can download it for free but I want to support their cause.

b12d.org/submit/document?id=46

If that link doesnt work. Try this one and click on down load symptom list.

b12d.org/overview/symptoms

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beginner1

waveylines "Am very grateful to this forum & B12 deficiency.org who are all so supportive, knowledgeable and informative. I shudder to think what state Id be in otherwise......"

Me too.

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GGourmet

Vision like having had 2 large glasses of wine. As soon as I said this to my GP, he got it. This is a B12 deficiency issue for sure. I have to take a daily sublingual to control this as the injection only helps for a day or to. All other symptoms after 2 years are now clear.

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