Double vision: Hi there. Can anyone... - Pernicious Anaemi...

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Double vision

Goaliegirl profile image
32 Replies

Hi there. Can anyone tell me if they have experienced double vision with PA?

I have Vertigo and also double vision in one eye. I know PA can cause vertigo but I’ve never heard of it affecting your eyes. It’s worrying me that it may be something else so I’ve been to an eye clinic. They say the muscles are weak in it but it has apparently changed over the last couple of weeks so they’re not sure what to make of it. I am going to talk to my gp tomorrow but honestly I don’t hold out much hope of her knowing or doing anything. I get more help from this forum than I ever get from her.

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Goaliegirl
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32 Replies
Wheat profile image
Wheat

hello, yes I have double vision in my right eye.

Sometimes it's a bit bothersome but its not all the time. Mine is when I am very tired, especially when reading a lot.

It appeared when I was B12 D. I have read (can't remember where) it can be a symptom.

Good that you had it checked out at the eye clinic. I can see why you are worried. Wonder if it fluctuates in severity like mine when you overdo it.

Perhaps others can verify or help with this.

Hope you get an answer. Best wishes for tomorrow, x

Goaliegirl profile image
Goaliegirl in reply toWheat

Thank you Wheat. Mine is there all the time. It was “side by side” so they fitted a prism to my glasses but I had to go back for a check up today and it has changed to “up to the left” This has concerned them. I”ll let you know what the gp says tomorrow …..she doesn’t believe PA causes any symptoms except fatigue. When I first explained to her about the terrible tiredness I felt and how I was falling asleep while the children I worked with were talking to me, she replied Ack I could fall asleep by the end of the day too. It took many visits before I got her to run blood tests.

charks profile image
charks

I didn't have double vision but my eyesight got so bad I couldn't see more than 10 ft away. Within 3 days of taking B12 my eyesight returned to normal. It was a miracle!! So yes B12D can affect eyesight,

Goaliegirl profile image
Goaliegirl in reply tocharks

Thank you Charks for sharing that with me. It gives me hope. I will increase my SI and see if it makes any difference. I am so glad your eyesight is back to normal 🥰

Narwhal10 profile image
Narwhal10

Hi Goaliegirl,

Sorry to read that you are suffering. From your previous posts, you report that you have been diagnosed and been treating self for approximately 5 years. Then another disease came along for you to live with. So, in my mind, I think hmm what is going on with this person ?

Is it PA ? Is it the second illness or is it something else ? Obviously, PA/B12D can cause vertigo because the back of the brain (cerebellum) can be affected OR the inner ear called Benign paroxysmal positional vertigo. Please ask your GP to undertake the Dix–Hallpike manoeuvre tomorrow. Usually nausea is associated with it and as a consequence of the manoeuvre your eyes (irises) will flicker back and for. This is called nystagmus (nis-tig-mus).

Yes, PA/B12D can affect the eyes because the 3rd cranial (facial or brain) nerve is the oculomotor (OCK-yoo-lo-motor) nerve. Sounds fancy doesn’t it ? Eye nerve is suffice. Any weird and wonderful symptom can arise from droopy eyelids, blurred vision, pupils not constricting and relaxing at the correct speed to words jumping all over the page. Plus, more. It is good that you have been to an eye clinic.

It is wise to increase your injections to see how you respond. My questions always are Why now ? What has changed in this person’s health ? Have I missed anything ? If I put everything down to PA/B12D then I feel I was being inept.

Hope tomorrow goes well.

Broxibear55 profile image
Broxibear55 in reply toNarwhal10

Hi yes when I'm low on b12 I. Can't read the newspapers

Goaliegirl profile image
Goaliegirl in reply toBroxibear55

Im sorry to hear this Broxibear, it’s difficult isn’t it. I hope it resolves for you.

Goaliegirl profile image
Goaliegirl in reply toNarwhal10

I couldn’t get through to the gp. Unfortunately they are now on holiday until the middle of next week. (I’m in Northern Ireland). There is nothing I can do so I will just continue to SI and hope it helps.

Goaliegirl profile image
Goaliegirl

I absolutely agree with you Narwhal10 which is why I am going to see my doctor. However knowing the vast array of symptoms PA can cause I thought it wise to ask here first before my mind goes travelling down any scary rabbit holes. I will increase my B12 anyway and see what happens. I have a few things that had improved now raising their heads again so hopefully it will help those even if it doesn’t help my eyes. It is good to hear other people have similar problems and I appreciate every person that tries to help on this forum…

Jillymo profile image
Jillymo in reply toGoaliegirl

I also had the vertigo and vision problems !

My eyesight quickly resolved once on injections but the virtigo is still an issue. It will take time but hopefully will improve with more frequent injections. I often feel I am making progress then something or other will once again raise it's ugly head. 😒

As frustrating as it is it seems we are all different but do stick with it. 😘

Goaliegirl profile image
Goaliegirl in reply toJillymo

Thanks Jillymo I definitely will stick with it. It certainly helps to talk to someone who understands.

Blueoxo profile image
Blueoxo

Could Myasthenia Gravis be a possibility, especially if you have potis along with the double vision ??

Goaliegirl profile image
Goaliegirl in reply toBlueoxo

Hi BlueOxo thank you for your reply. I’m sorry, what do you mean potis?

Blueoxo profile image
Blueoxo in reply toGoaliegirl

Sorry, should be spelt ptosis, it’s where the eye lid droops down. That and double vision are symptoms of ocular myasthenia. The eye lid may droop down, usually later in the day.

Goaliegirl profile image
Goaliegirl in reply toBlueoxo

Oh. no I have no eyelid droop thanks Blueoxo.

Jillymo profile image
Jillymo in reply toBlueoxo

I had both blurred vision and double vision which has now righted it's self now I am on B12 injections, I inject daily.

I was seen in an eye clinic in Bristol for many years because they thought thyroid eye disease - but that was ruled out.

I have a lot of autoimmune ailments but did wonder some years ago if I had myasthenia gravis which affects the muscles. My muscle weakness was due to my other conditions. I am not medically trained but if worried get your Dr to rule it out - a low B12 affects the muscles, eyes, balance and gait.

Goaliegirl profile image
Goaliegirl in reply toJillymo

Thank you so much Jillymo. I have started injecting daily. I will keep doing that until I see some improvement. I realise everyone is different but honestly I really appreciate your help. Hearing your experience and everyone else’s has given me hope that my vision will also right itself….and I do think having the stress removed helps a lot so again, thank you.

Jillymo profile image
Jillymo in reply toGoaliegirl

Just remember some symptoms can get worse before better which other's refer to as reversing out.

I found it stressful having to constantly battle with Drs so took matters into my own hands. 😘

Goaliegirl profile image
Goaliegirl in reply toJillymo

My doctor doesn’t believe or even listen to anything I have to say about PA. She insists on testing my levels even though I have told her it is advised not to test once B12 has been started. I haven’t come across any medical professional as yet that knows anything about it. It’s difficult…that’s why this forum is invaluable. Thank you I will be aware that it might get worse before it gets better…now I know I can persevere. Can I ask one more thing..if you’re injecting every day where do you inject? I inject into my thighs but I’m worried that they may become “hard”

Jillymo profile image
Jillymo in reply toGoaliegirl

I inject into tops of both arms and my thighs albeit difficult doing opposite sides. Some do sub cut into the belly. I have found most consultants and Drs to be totally ignorant when it comes to a b12 deficiency hence the need for this site. Incase you havn't the new guidelines ........... nice.org.uk/guidance/ng239/...

Note where it states not to retest once treatment has started.

Goaliegirl profile image
Goaliegirl in reply toJillymo

Thank you so much. I will try injecting into my arms as well as my thighs. I have printed the guidelines off and will give them to my doctor. I know she won’t be amused but I will offer them as tactfully as I can. You have been so helpful. Thank you so so much. It has made a difference to me. 😘

Litatamon profile image
Litatamon

Yep double vision was one of my 30 plus symptoms. And it disappeared, after having it for an extended period, not long after loading doses.

My GP told me it was not possible. I told her it is in fact a documented symptom. I had it for at least six months, and it has disappeared with supplementation.

I went rogue right away and went EOD not long after loading doses, until I felt no improvement. I would say that was over a year.

Goaliegirl profile image
Goaliegirl in reply toLitatamon

Wow! This is so encouraging to hear! I wasn’t sure at all that double vision actually was a symptom…thanks to you I now am! Have all your symptoms improved? I hope they have. I don’t care how long it takes for the double vision to go as long as I have hope that it will go eventually. Of course I will still speak to the doctor when I can but honestly I feel so much better going to bed tonight. I will continue with the increased doses . Thank you Litatamon so much and indeed everyone for your help…I would be lost without you all!

Fluffyfloo profile image
Fluffyfloo

I would get your thyroid checked.

Goaliegirl profile image
Goaliegirl in reply toFluffyfloo

Oh I have an underactive thyroid Fluffyfloo. I have autoimmune diseases if you have not guessed by now lol.

Fluffyfloo profile image
Fluffyfloo in reply toGoaliegirl

I have horrible double vision. Mine is from Thyroid Eye Disease.

Goaliegirl profile image
Goaliegirl in reply toFluffyfloo

Who diagnosed that Fluffyfloo? Was it your doctor or your optician?

Fluffyfloo profile image
Fluffyfloo in reply toGoaliegirl

I had a diagnosis of Graves' disease. But none of these regular even retina opthalmologists know much of anything about Thyroid Eye Disease (TED). Now I see an orbital and occuloplastic surgeon at a major eye hospital who fully seems to know what's going on. It is that specific type of opthalmologist who will be competent to make an accurate diagnosis. Other opthalmologists won't be reliable. An optometrist or optician I wouldn't even think about. I would try to go specifically to an eye hospital. My next step is to see a pediatric stabismus ophthalmologist to see what can be done to correct my vision. It is very hard to get good medical care for this. You might want to join a thyroid eye disease group to see what you can find out, in terms of occuloplastic and orbital surgeons or strabismus surgeons near you. Those two, in that order, would have the most experience in diagnosing TED. I was told by my doctor that TED is a disease of your immune system (even though it's called Thyroid Eye Disease-that it really doesn't have to do with your thyroid).

Goaliegirl profile image
Goaliegirl

Gosh I’ve heard of Graves’ disease but never Thyroid Eye disease. I looked it up online ..it says something about having an over active thyroid ..mine is under active..does it show in your appearance? I mean is there something distinctive about your eye/eyes? It is something I will definitely take onboard. The eye clinic I went to is a private one, I don’t know if they would know about it but I will ask.

Fluffyfloo profile image
Fluffyfloo in reply toGoaliegirl

Often with TED your eyes can have swelling, be sensitive to light or glare, look inflamed, or have double vision that might worsen over time. My double vision started out at first just in the morning. Now it's all the time. I think it occurs more frequently with Graves' but it also occurs with Hashimoto's. And it can start before or after the autoimmune thyroid condition does. It's frustrating how little most opthalmologists know about it. I had it for almost a year before a retina specialist and then a glaucoma specialist both told me that this condition needs to be followed by an occuloplastic and orbital surgeon as they know the most about it.

Goaliegirl profile image
Goaliegirl in reply toFluffyfloo

I went back to the eye clinic/hospital today, had scans of my eyes done and I saw a surgeon. He says he wants to get to the bottom of it…mentioned autoimmune disease and even said low B12 can affect the nerves and the muscles of the eye but said he didn’t know enough about pernicious anemia to say for definite if it was that. He has organised an MRI as he doesn’t want to rule anything out without being sure. He also wants my gp to run blood tests to rule auto immune disease out and check my kidney function for the scan. So I will try once more to speak to my gp in the morning…whether she will organise these blood tests or not remains to be seen. I will let you know. I am continuing with the B12 and hoping things will eventually improve.

Fluffyfloo profile image
Fluffyfloo in reply toGoaliegirl

This surgeon sounds like he's trying to get to the bottom of this. Getting to the right doctor who treats a lot of thyroid eye disease patients is key to getting proper treatment for that condition. My guess, as a patient having that, is that you are probably more likely to have that than you are to have double vision from low B12. But I am neither a doctor, nor a medical person of any kind. I just know for me, nobody really helped me until I saw the retina specialist and the glaucoma specialist. The glaucoma specialist was listed as a top doctor, and she actually dictated a referral for me during my visit with her, to the occuloplastic and orbital surgeon that I see now, and he is great. If you are anywhere near Philadelphia, Pennsylvania, he is at Wills Eye Hospital. It was very stressful before I got to him because nobody knew what was going on or what needed to be done.

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