B12 deficiency & glaucoma/optic nerve damage

[JanD236]

I was diagnosed with PA a few months ago. My symptoms were IBS for the last few years, tiredness, exhaustion, decreasing physical/sporting ability and tinnitus in the last 6 months.

I also have glaucoma and have been monitored for nearly 20 years as my pressures were on the high end (22 or so). About 6 years ago I had signs of damage to my optic nerve & was started with drops which brought my pressure down to 14-16 but the damage & sight loss continued. I've had to have an op in one eye to reduce pressure to very low (under 10) and have maximal drops in the other eye.

I asked my eye specialist if the B12 deficiency could have contributed to the damage to my optic nerve but she didn't think there has been any research to show this. However, recent publicity about nitrous oxide/B12 deficiency/blindness suggests otherwise.

My question is, does anyone else with B12d have glaucoma/optic nerve damage and if so was it caused by high pressure or like mine merely normal to highish pressure?

Thanks

[Frodo]

This sounds really difficult and I'm sorry you have these symptoms. I don't know anything about this except that PA/B12 Def causes nerve damage, and I don't think this is limited to only certain nerves, so presumably the optic nerve could be affected? I have noticed my vision becoming worse, and blurry at times, and after a B12 injection it clears and improves considerably. An acquaintance with MS had sudden onset glaucoma which was an emergency, but I don't know if it was related to her condition (which also involves nerve damage). Sorry, not much help.

[wedgewood]

Dear JanD236,

I have PA also, with symptoms similar to IBS. have now more-or-less cracked the IBS symptoms with a water -based probiotic, digestive enzymes,and adjustments to diet. After a much ado, I have been told by a gastroenterologist that most PA sufferers have Achlorhydria(No or low stomach acid) which obviously leads to digestive problems. It is caused by an antibody which is connected to PA. There seems to be no NHS treatment for this,so you are on your own, or consult an alternative practitioner.

Since being diagnosed I have read no end of information on the subject,and find that vision can also be affected by lack of B12. Whether that applies to you or if your problem is another issue, who knows. Lack of B12 can affect many nerves(the myelin coating actually) And we are all different. My feet have been affected---numbness,which is now irreversable.

Are you getting sufficient B12 injections.? When the condition has been left untreated , one injection every 3 months is often not sufficient. This means self-injections. If you want to do that, come back here,and we will help you achieve that.

Sorry that this hasn't really answered your question( no I'm not a politician!)

The very best wishes to you!

[JanD236 in reply to wedgewood]

Thanks Wedgewood. Yes I was told by an allergy specialist that I probably have low stomach acid following a huge allergic reaction to eating a peach (undigested peach proteins entering my gut will have caused it) . Nevertheless one GP I saw (not my usual) still thinks antacids could be the answer to stomach discomfort..... (I haven't followed this bit of advice). I do test positive to IF & parietal cell antibodies.

Which probiotic & enzymes do you use? I have found relief from bloating & constipation by following a dietician's advice and cutting out insoluble fibre (eg. Eat baked potato but not the skin) and limiting fibre generally. The mote constipated I got the more fruit & veg I ate & the worse I got! Much better now.

I was originally given B12 injections every 2 months but I found I was running out of energy with a couple of weeks to go so my GP changed me to monthly and so far this seems to keep me feeling on top form.

I have to say that my GP has been fantastic saying that if monthly isn't enough just come back sooner. No hassle & no struggle needed. I'm staggered by the problems most on this forum have in getting the help they need.

[clivealive Forum Support in reply to JanD236]

So glad to read your GP is so co-operative over the frequency of your B12 injections.

I've been on four weekly injections for over 43 years for PA and my present doctor gibed at my suggestion that I sometimes felt the need for an earlier injection and said that the prescription said "every four weeks so every four weeks it must be" assuming that "one size fits all" and not taking into account my height, age (74) weight, life-style or metabolism.

So - I stood up to him (I'm six feet four inches tall ) and he eventually backed down and now "allows" me to have the occasional 3 week jab.

I hope you manage to resolve your other problems and wish you well.

[wedgewood in reply to JanD236]

Sorry that I have not been able to get back to you before. I take a water-based probiotic called SYMPROVE,and it is a godsend to me. It is quite expensive, but if you buy 2 months supply from the makers,, you can get one months'free. I have been on this for nearly six months,and have managed to cut down to nearly half the suggested dose. I shop around on the internet for the best deal. I have been to a gastroenterologist who eventually said that as a Pernicious Anaemia patient , I should take it that I have little or no stomach acid(Hypo or Achlorhydria) DO NOT TAKE ANY SORT OF ANTACID! (the worst thing you could do!) I might well go and see a nutritionist as my tum is not quite 100% But I'm so much better than I was. I donot get tummy pain any more!

It's great to know that one has friends on this site, isn't it? I think that Martyn Hooper deserves a medal! All the best to you.

[Reneef71 in reply to wedgewood]

I'm also interested in what probiotic and enzymes you use. Thanks.

[wedgewood in reply to Reneef71]

Sorry that I've noy got back to you. I use a water-based probiotic called SYMPROVE. Its marvellous. Go on the web-site and read all about it(no, I haven't got shares in it!) Hope that it can help you. Best wishes.

[Gambit62 Administrator]

Really good that you have a GP who seems to be aware of B12 enough to listen to the idea that once every 3 months isn't enough - there are a few out there. Really hope they don't move on or retire ... ever ... for your sake!

I'm not aware of any link between glaucoma and B12 deficiency, though I have just come across a study that implies that B12 can slow the progress of glaucoma ... seemingly by slowing the retinopathy that is part of the process, ie it involves both damage to the optic nerve as a result of a build up in pressure and then damage to the nerve cells on the retina which slowly narrows down the range of vision even more.

nhs.uk/Conditions/Glaucoma/...

As Frodo says, lack of B12 does cause nerve damage because of the part B12 plays in maintaining the protective layer around the nerve cell.

The effect of B12 in retinopathy probably has two elements a) the build up of homocysteine if it isn't being processed properly which leads to cardio-vascual problems and higher pressure in blood vessels ... meaning the the vessels in the retina are more likely to degrade and b) the breakdown of the protective sheath around nerve cells, which would include the cells on the back of the retina.

Glaucoma is caused by pressure but it's not related to pressure in blood cells but the fluids that form part of the lens that is the eye - probably because of a drainage problem in ducts. It seems unlikely that B12 would be involved in that part of the process but it's also true that nobody seems to know what actually causes the blockages and build up in pressure, though the possiblity of it being a blood vessel causing the blockage is mentioned in the article above so guess that could possibly be caused by a B12 problem.

[Laura5]

This suggests that there may be a link with homocysteine and at least one type of glaucoma ncbi.nlm.nih.gov/m/pubmed/1...

[Frodo in reply to Laura5]

That's useful, thanks, Laura. Worrying though, as my grandfather and brother had/have glaucoma and according to a recent test, I have high homocysteine.

[wedgewood in reply to Frodo]

Ihave read that high homocysteine can be lowered with B12 and folate.

[Frodo in reply to wedgewood]

Yes, and betaine. And I think B2, B6, and magnesium but would have to double check those. I should have another test to see if the B12 has made a difference, but the GP didn't think they would pay for it. I am supposed to be finding out if the NHS does tests for the MTHFR gene but haven't got anywhere with that yet. Didn't feel so good on methylfolate/B6 so have stopped them but trying to get more in diet.

[Frodo in reply to Frodo]

What's quite confusing is that foods high in B12 are also high in homocysteine, yet b12 lowers homocysteine.

[Christine48]

I also have recently been diagnosed with glaucoma in both eyes with no family history of glaucoma. I have been having three monthly vit b12 injections for over twelve years ( was never given the loading dose initially ) and am constantly trying to increase the frequency as my symptoms are markedly worse from 6 wks after my injection, but with no success.

[wano]

Hi Jan, just finding your post. I have hypothyroidism (Hashimotos) and was diagnosed about 3 years ago with what they're calling glaucoma (although the doctor recently has said it's a medical mystery due to my pressure always being normal). My B12 was at 280 last test I had, which is in low range, and I started taking a tablet everyday. I'm certain these are related as I also have other symptoms and strange nerve feeling in my right arm, as well as head bumps behind my ears that grow and shrink (also a medical mystery). My doctor refuses B12 shots so am seeking something else... however, thought I'd let you know that I do believe there is a connection. My optic nerve damage in one eye is consistent at each visual field test.

[wano in reply to wano]

ps. see the post I wrote speaking to this problem.