PA and Eye Health

Hi All,

Several years ago I began to experience flashing lights in the periphery of both eyes. Due to the fact that I hit my head in a car accident I was referred to a retina specialist to make sure my retinas weren't detaching as a result of the impact. She said my retinas were perfectly healthy and there was no worry. Fast forward 2 years, I was diagnosed with SASCD due to PA. I've been doing fairly well; but in the last few weeks, the flashing has gotten worse and my vision has gotten worse as well.

2 months ago, I moved myself from weekly injections to sublinguals. My recent bloodwork showed a drop from my b12 at 2000 (loading doses) to 464. I've read about PA affecting the eyes, but I was wondering if anyone else has experienced the same or similar symptoms. My hematologist is on vacation this week so I spoke to his nurse who made me feel like I was crazy for asking to go back on injections. My serum b12 is in the normal range, but who knows how much active b12 is really being absorbed by my body.

I'm really irritated for being made to feel like I am an annoyance, and she was actually angry at me for "challenging" her with questions. Can anyone provide any feedback on these issues with my eyes so I can pass these experiences along when I speak to my MD next week?

Thanks to all!!

27 Replies

  • Google "PDF BMJ Vitamin B12 Deficiency Hunt".

    The first page of searches should show a link cmim.

    That is the recent paper out in the UK and in it there is a section about optical problems.

    It's too complicated for me to go wading through paperwork at the minute, and I don't think you'd find much (but would be happy if you proved me wrong!) about why oral b12 is less effective the longer it is used.

    I did very, very well on oral methylcobalamin when I first got treatment, I then went onto injections for 2 or 3 years. When I tried the exact same oral tabs earlier on this year, they simply didn't work.

    And these are tabs I would have sworn by.

    The above paper is great for highlighting to doctors that b12 deficiency isn't a blood condition and points out a lot that is going wrong. But it stops short of the issues with treatment. They do give a disclaimer though stating that the current protocols are not founded in much!

  • I have monthly B12 injections, my recent blood tests showed reserves of 2000 or more. I had PVD (Posteror Vitreous Detachment) which sound like what you have had judging by your description this year, I had never connected it with B12. Thanks for posting Njmommy.

  • I also thought this may be PVD which is common as people get older, as is B12 deficiency. Perhaps there is a clue there.

  • I am sure there is, also with thyroid problems, I had thyroid cancer 10 years ago and had a complete thyroidectomy. Sure it is all connected.

  • Interesting. I've made a connection with my PVD to a deficiency of Vit B12. I can verify that with symptoms resolving after taking high doses of sublingual B12.

    I saw my ophthalmologist and she confirmed a PVD in my left eye. I wondered if the B12 deficiency had anything to do with it. My deficiency symptoms peaked just about the time my retina started to detach.

    I experimented with increasing my sublingual B12 until all PVD symptoms resolved. One time I decided to decrease the B12 to see if the symptoms increased. Sure enough they did. I returned to my daily 20,000 mcg dosing until all symptoms subsided.

    I'm now on a maintenance dose of 10,000 mcg daily. Recent blood tests show it's the perfect amount for me.

    I wanted to add that I've always had problems with dry eyes, well, it started when under treated for hypothyroidism. After being on 10,000 mcg of B12 daily, no more dry eyes. I stopped putting in nightly treatment ointment. It irritated my eyes. Still no dry eyes. Wow!

  • Hi, I've also been having trouble with dry eyes, did you ever use b12 injections or just the sublingual? I've just started b12 injections and they haven't helped my eyes at all :/ Also can you tell me how you were diagnosed with PVD, was it a simple opticians exam? Thanks

  • CarlyS123,

    I saw an ophthalmologist who knows my eyes and treats diseases of the eye. I described my symptoms to her and she pretty much knew from my one symptom, classic for PVD, that I had it.

    What I saw was a ring of flashing lights which sometimes came over my one eye's vision. It was strange as strange can be. Something I'll never forget. It was accompanied with dizziness and nausea. Of course most anything to do with eye diseases and sometimes conditions causes dizziness and nausea. Something I learned years ago when I had Narrow-Angle Glaucoma.

    I've never had the B12 injections.

    I also have hypothyroidism. So the combination of the right dose of thyroid replacement and the right dose of sublingual B12 relieved my dry eyes. I use computer glasses too. Those help with dry eyes as well.

  • Hi NJMommy, what kind of flashing in your eyes do you get? Sometimes I get flashing in the very edges of both eyes when I move them from side to side but it doesn't happen often. However I have been having other problems with my eyes, they are very dry and I have to put a ton of drops and ointments in a day. I only started injections a month ago and so far they haven't helped my eyes at all so like you, I'm not sure if my PA has anything to do with my eye problems or not. Apart from that I've been told I have excellent vision. Also what does SASCD stand for?

  • I had the same question about SASCD? What does it stand for? I was diagnosed with PA about 8 months ago and started injections around that time. I developed dry eyes a month or so before diagnosis and the flashing started about two years ago. I'm happy to say the flashing is completely gone. However the dry eyes are the same and I can no longer wear contact lenses and must wear glasses. It's the one symptom that has not improved. : (.

  • My DR told me, that my blurry eye was due to my B12 deficiency, I presume it can affect the eye in other ways, this now has cleared for me.

    Your bloodwork has shown that you have dropped ( a lot ) so that is telling you something.

    For whatever reason, the sublinguals didn't work for me after being on injections, they no longer had any effect on my symptoms.

    I would also complain to your Hematologist about the treatment you received at the hands of HIS nurse.

    The nurse, made you feel you were an ANNOYANCE, and she got ANGRY with you, really, then make her day a good one...................................

    All the best Njmommy.


  • Thanks everyone for your responses. SASCD stands for Subacute Spinal Cord Degeneration. My my neuro symptoms were very severe. MRI showed 2 lesions in the brain and 6 on the cervical spine. Luckily injections helped a great deal with all the neuro symptoms, but this eye nonsense is really getting to me. It's flashing in the bottom outer periphery of my right eye. There isn't a shape like a ring, and it just happenes. It doesn't correspond with movement. Seems to happen more when I'm tired. There was no detachment when I was checked 2 years ago, but it seems that there is something called optic neuritis which sounds to have similar symptoms.

    I'm definitely going to have a chat with my MD when he returns next week. I thinknthat she was annoyed because I was asking questions that she didn't have the answers to. I also asked her how she knew 464 was totally normal when she didn't have an idea how much my body was actually absorbing, she got really irritated when I asked her to write me a script to check my MMA and Homosistine. She had no clue what I was talking about. Sounds like she needs a trip back to school of a little while!

  • I have PA and gluten intolerance (I suspect I'm coeliac). For years I used to intermittently (particularly when tired, stressed or dehydrated) get a spreading ring of flashing lights, which I seemed to be one of these:

    I also had occasional white flashes. I told my optician but my eye tests never showed anything untoward.

    I've now been on B12 injections for five years and gluten free for three and in the past year both of these have entirely gone away.

  • Freelancer, thanks very much for the info. I don't think I have an allergy to gluten, but I do have a tendency to frequently be dehydrated. I've got so many things going on that I am having some difficulty pinpointing if the flashing began before or after my accident 2 yrs ago. Incidentally, I needed surgery to correct a crushed elbow because of it, and I have since learned that certain types of anesthesia can severely and quickly deplete b12. I definitely noticed the flashing shortly my operation, and it was a second corrective surgery this past April that eventually led to my PA diagnosis. I'll have to drink as much water as I can and continue to stay on injections instead of sublinguals to see if symptoms abate.

  • Wow, this thread is eye-opening for me (pardon the pun).

    Last August I reduced my dose from .25ml of cyano taken subcutaneously every day to only four times a week (in other words I went from 1.75ml a week to 1ml a week).

    I have been noticing peripheral flashes lately and wondering what is causing them. I sure hope it isn't the change in my B12 dosing, but now I have that to consider. :(

  • Galaxie, there appears to be a lot of us dealing with similar symptoms. I was trying to be smart when I moved from injections to sublinguals and saved some ampules just in case. In the last week, I've given myself 3 injections and haven't noticed a change yet. Patience is not one of my virtues, but I'll just have to wait and see.

  • Galaxie, there appears to be a lot of us dealing with similar symptoms. I was trying to be smart when I moved from injections to sublinguals and saved some ampules just in case. In the last week, I've given myself 3 injections and haven't noticed a change yet. Patience is not one of my virtues, but I'll just have to wait and see.

  • I didn't exactly change my dosing by choice, so it's a bit problematic if the flashes are related to reducing the dose. I have been having difficulty maintaining a reliable supply, so increasing again isn't really an option. I might try switching to once a week IM (so it's still 1ml a week), but I don't know that it will make much difference.

  • That really stinks, I'm sorry your doctor made the decision without your input. Are you in the UK? I've read that many PA sufferers in the UK are unhappy with their dosing and supplement themselves by ordering injection from Germany.

  • I'm in the US. There's been a supply shortage going on for awhile here along with increasing regulations. Both of those things have made the price of injectable cyano skyrocket. The same amount of B12 that used to cost about $15, now costs around $100.

    I finally found a naturopath who will prescribe me 1ml a week (after years of looking for a doctor who would be willing to prescribe more than one shot a month), so I'm trying hard to stick to that dose (because that is the most she will prescribe). I'm still trying to hash out what pharmacy will fill the script though. My local pharmacies are all out of stock. I am crossing my fingers and hoping what I need will magically appear!

  • Have you tried buying from Goldpharma in Germany?

  • I haven't. I haven't wanted to deal with the currency conversion, extra cost for shipping halfway around the world, and difference in language. It would end up being just as expensive as buying it from a compounding pharmacy closer to home (which is what I ended up doing last time).

    I am hoping that I can get my supply through a mail order pharmacy that is part of my insurance. At least then I wouldn't be burdened with the entire cost. Of course, when I contacted that pharmacy they said they were currently out of stock also, so who knows. I'm trying not to panic about it. And I do really hope that my optical flashes are unrelated. I was doing really well with 1ml a week otherwise.

  • I buy my own medicine (not B12) from Goldpharma.

    There is no language issue - everything I need to read is in English bar a few words. There is no currency conversion, I simply use a Visa card and pay what they quote (in GBP). I do not know how much postage would be for you. Given the apparent difference in cost, and availability issues, I'd have thought it well worth looking at using them or another non-USA supplier.

  • I agree. Why not just ask what the shipping cost would be to the US?

  • The Goldpharma site will show prices in many currencies including US$. These are guide prices and the actual price charged may vary slightly due to fluctuations in exchange rates but this is not going to be significant.

    Goldpharma supply a number of different brands but the price for 10 x 1mg/1ml single use ampoules of cyanocobalamin is about $8. My first sample shopping basket was 20 x 1mg/1ml Rotexmedica cyano at a cost of $16.28 plus $8.56 shipping total $24.83. Prices reduce for quantity and my second sample shopping basket was 100 x 1mg/ml Rotexmedica cyano at $49.52 plus $7.35 shipping (not sure why that was less than before) total $56.88.

    Hydroxo is also available and the prices are about 50% higher than for cyano at about $12 per 10.

  • I'm in the US as well. I've had a hell of a time finding it, but I've been lucky and one of the local pharmacies always seems to come through. I'm surprised to hear it's so expensive, my insurance covers it for me, I just have a copay. My doctor is generally pretty good about prescribing for me; but, after talking to his nurse the other day, I'm not sure what he'll do when he comes back from vacation.

    I've been doing some reading and the ridiculous thing about this shortage seems to be that it's not the Cyano that's in short supply, it's the stupid little bottles it comes in. Good luck.

  • Sounds a lot like ocular migraines. They are not painful just irritating. Flashing lights in peripheral vision. They are more frequent when you are tired, also when your caffeine consumption increases. Have had them for years but not sure if it's related to PA.

  • Thanks for the input FlyGranny. I've had Occular Migraines for yes as well. This is totally different. My migraines aren't flashes, they are light rings that that have almost a swim my quality to them. Almost like when heat radiates off a tar road on an extremely not day. These are much different, and extremely annoying.

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