Pernicious anemia and cataract

[Wibblewobble14]

Hi I'm a 56 year young woman, who got diagnosed with PA and on B12injections every 2 months . Just recently I had to go and get my eyes checked because I was getting blurred vision in one eye. Only to find out that in 2 yrs iv got cataracts in both eyes and need surgery. Ithe question asking is there a connection between PA and cataract? Thank you I'm advance.

[Narwhal10]

Hi Wibblewobble14,

Welcome here. Love your name, especially wibble which was used in Black Adder Goes Fourt. Men pretended to be mad to stop them going over the top.

It is worth joining the Pernicious Anaemia Society for accurate information. You do not need a diagnosis.

pernicious-anaemia-society.org

You do not say where in the world you are. They are international. They are the only organisation to collect and provide Data. You are 56 years of age. There is so much bumfgnacious research saying this disease affects those above 65 years.

Please get copies of your NHS blood results, note the range and cut-off level of B12 in your Integrated Care Board or whatever. You also need good folate, ferritin and vitamin D levels. Please know if there is any family history and gut problems.

Please keep a symptoms diary. If you can please buy a copy of Dr Joseph Chandy’s Vitamin B12D in Clinical Practice. This book will explain a bit of the anatomy, physiology and cases.

b12d.org/book

P.A./ B12D is very poorly understood by the medical profession. To my knowledge, there is no U.K. haematologist who specialises in it. Therefore, there is no Ophthalmologist who specialises in it.

The doctor in the U.K., people tend to go, to has trained in anaesthetics but takes a special interest.

Most of us Self-Inject because frequencies prescribed are too low.

To answer your individual question, we first need to establish what a cataract is. It is a cloudy area in the part of the lens of the eye which causes decreased vision. So, what is the lens of the ocular organ composed of ?

Type IV collagen, laminin, heparan sulfate proteoglycan / glycosaminoglycans or (GAGs) and entactin.

Sugars and amino acids basically. You can connect everything to PA/B12D but talking of GAGs, did you hear the one about the Blind carpenter ? He picked up his hammer and saw.

🤹🏻‍♂️

[Wibblewobble14 in reply to Narwhal10]

Thank you for replying and you made me chuckle about my name haha. I'm from Manchester in the UK, I'm gonna join the PA society, because your right nobody in the UK seems to know anything! I find this site very interesting as I don't feel alone about it now.

[PlatypusProfit8077]

Hello! Welcome to PA! (it’s not a fun club to be in but the people are lovely).

I don’t know about cataracts (although the eyes dan definitely be affected by being deficient in B12) but if you scroll down the posts you’ll see my recent discussion about my vision changes. B12 really is insanely important, and I’m learning new things all the time.

[Wibblewobble14 in reply to PlatypusProfit8077]

Thank you so much for the information x

[wiserlady]

I also have just found out I have cataracts, and am 67, but am taking lutein and elderberry to turn the clock back with that. I doubt it is connected. I looked at joining the pernicious anaemia society but there are other forums where you can join in and chat free. Also looked at getting more vitamin b12 injections from the other site that sells them worldwide. But think that would be very expensive. Now am considering taking oral tablets bought b y myself in 1000mg doses, where you take one or two per day.

[Wibblewobble14 in reply to wiserlady]

Thank you I'll look into taking more B12 tablet form x

[wiserlady]

Hi Wibble. What I read on two major serious sites was that they could not understand why so many doctors insist on injections when taking high doses of pills every day will achieve it. 1000mg one or two a day should take about 2 months to show a reasonable difference and 4 months to show a better difference.

[PlatypusProfit8077 in reply to wiserlady]

What sites were these? Oral supplements have a high failure rate for PA sufferers, as they follow the same route as food down to the stomach where you need intrinsic factor to help it become useful to the body. Oral tablets will raise serum B12 levels but only a minute percentage will be useable. Symptoms are very rarely managed by oral tablets

Injections bypass the stomach and go straight into the bloodstream via the muscle.

[Lurcher-lady in reply to PlatypusProfit8077]

Exactly. I’ve not had diagnosis of PA, just B12d Originally treated with oral B12 which made no difference to my symptoms, despite later bloods showing high levels of B12. A few loading doses of b12 injections made all the difference and so despite my dislike of needles I’ve continued on my own SI for nearly 5 years now. Obviously I was not absorbing via the oral route. Happy to continue on this regime as it’s what keeps me well, despite my GP’s lack of understanding.

[Gambit62 Administrator in reply to PlatypusProfit8077]

 PlatypusProfit8077 Narwhal10

There are some large scale studies - mainly in Canada, I think - showing that high dose oral >1000 mcg a day can be effective and about 60+% of those in one study preferred it to injections. More than 1000 participants.

There are also studies showing that high dose oral does not work for everyone - somewhere around 20-40% of patients - independent of cause of B12 deficiency so the doesn't appear to be related to specifically to PA.

I can understand why, based on a 60% success rate some people might wonder why insist upon injections. They are certainly a lot quicker at raising levels if they are dangerously low but aren't without disadvantages as a long term treatment.

Personally I think 60% is too low a figure to see high dose oral as the only treatment strategy. But, if you are serious about allowing patients to make informed choices it should be available as a potential treatment - albeit with the caveat that it doesn't work for significant numbers of people.

In the period between B12 and intrinsic factor being identified as the cause of pernicious anaemia and the successful synthesis of B12 using bacterial vats - high dose oral - liver - was the only treatment available - rather glad that isn't the case any more.

[PlatypusProfit8077 in reply to Gambit62]

Interesting!! It’s good to hear that some oral tablets could be helpful - I’d love to read it, if you have the link?

I should edit my reply as you’re correct, it’s not just PA that often find oral tablets unhelpful.

[Gambit62 Administrator in reply to PlatypusProfit8077]

some links that might be interesting

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

[Jo5454]

Hi Wibblewobble14,

I recently watched some podcasts about health, can’t remember names links, but a group of Drs in US, some cardiologists, etc. looking at health in general.

One mentioned cataracts and said if we develop them earlier in life as you have, it was a sign of another condition going on in the body. Someone else may help further with the details but it was something to do with body sending out a certain substance in response and this forms cataracts?

How long have you been on injections?

Maybe you will see an improvement in them as you get further along line with your injections do you think? I was having problems with eyes earlier in year, very unwell at time with b12 defic obv worsening after being swopped to tablets. I felt there was a blurry covering over left eye that I couldn’t quite see through and both eyes felt they just couldn’t see properly, like I needed to switch lights on, I wondered if it was a cataract.That eye a,so had spells of going in and out of focus,bas if the pupil was getting bigger and smaller.

After loading dose this greatly improved, though I’d say it’s worsening again, but have only been given every 2mnthly inj niw instead of monthly I was on, so thinking may not be getting enough. I should’ve went to opticians prior to loading dose, but felt so unwell,but am going to go soon,Take care…

[Wibblewobble14 in reply to Jo5454]

Thank you for the information, iv been on B12 injection every two months for about 18months x

[GalDriver]

Hi Wbblewobble14 (fab name, there's a Wibbly Wobbly Lane in Hertfordshire). I have MS but b12 deficiency doesn't care for labels. I had 2 cataracts removed this year. One built up over years but the 2nd just took months which was a bit of a shock. I panicked about losing all quality of vision (no detail whatsoever, trees were vague green blobs) and had them removed privately to avoid the 12 month wait here in the Highlands. One of the best things I've ever done. I got a loan for it (£2750 per eye) which is leaving me a bit skint but I only have to watch birds at our feeding station to know I totally did the right thing. Good luck with yours.

Wibbly Wobbly Lane

[HeartyGilly in reply to GalDriver]

SpaMedica is doing cataract ops for the NHS with a very short wait - a friend had to wait ten days! Another a couple of weeks. So it is worth investigating SpaMedica for NHS cataract ops, free!

[GalDriver in reply to HeartyGilly]

Wow, that's impressive. Are they all over the UK?

[HeartyGilly in reply to GalDriver]

Certainly England. There is a list of sites if you google SpaMedica

[Wibblewobble14 in reply to HeartyGilly]

That's who have done mine ,they are brilliant. I only waited 5 days

[Nonameme in reply to HeartyGilly]

I was refered fro Specsavers by NHS and all done and dusted , second eye, collecting new glasses tomorrow all done in 8 weeks including waiting time.

[Wibblewobble14 in reply to GalDriver]

Love the sign 😄 Thank you x

Iv had one eye done 2 weeks ago, and I can't believe how I can see. The other one I'm having done in 4 weeks.

[yvonneu]

Hi Wibblewobble

I am 65 and also have PA and cataracts. At my recent diabetic review ( I am also diabetic) it was discovered that I also have age related macular degeneration.

[wiserlady]

Jeesus. As you purport to be. How insulting. I am actually a private psychotherapist, with famous clients. I have been on television, radio and in the press many times. I came here to discuss pernicious anaemia with people who had struggled with it and still were. I did not come here to be bullied, talked down to, belittled. Most people here have been incredibly nice and knowledgeable. If someone is rude to me I tell them. Yet you then find fault with me for doing that? I've wasted enough time here. Will not be here again. Thank you to those who were normal, sane, friendly and helpful. Not the others. Life is too short to come back.

[Nonameme in reply to wiserlady]

And all that makes you a better person how? I would not have bothered to reply but please, Do not take the Lords Name in vain on a Sunday too! As educated as you are I am sure you could have found a better descriptive.

Please feel free to respond but any interest in what you have to say has ceased so rant away to your self I am sure other have or will lose interest too unless looking for a weekend laugh.

[Gambit62 Administrator]

Hi Wibblewobble14 - I am not aware of any direct links between PA and cataracts but I'm not a medical professional. As I understand it cataracts - crystalised formations in the eye - are almost inevitable and tend to become more prevalent as you get older. I know many people who have had cataracts removed - it seems to be relatively straightforward procedure and complications are rare - only hears of one case - and it didn't put them off having cataracts in the second eye done without complications several months later.

The rate at which cataracts develop does seem to vary.

You might find this article on Claude Monet's cataracts interesting.

ncbi.nlm.nih.gov/pmc/articl...

I think they are often picked up by opticians at regular eye tests.

[SlothMode]

Hiya Wibblewobble,

I worked at an Optometrist’s before I got sick. Cataracts can develop at any age, even babies can be born with them! I used to tell people that most people will develop them and once the lens is removed and replaced they won’t get cataracts again. So no it has nothing to do with PA it is just something people get. I myself have cataracts in both eyes but mine aren’t in the centre of the eye they are more like fireworks. I hope this puts your mind at rest 😊🤗

[Wibblewobble14 in reply to SlothMode]

Thank you it does put my mind at rest ☺️

[Sleepybunny]

Hi,

I can't answer your question about cataracts but thought you might like to look at this thread where I left detailed replies including UK B12 documents and links for those struggling to get treatment.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I have read articles that suggest a link between B12 deficiency and optic neuropathy.

I'm not medically trained.