B12 Shots not working? B12 shots impact biotin levels?

[disneygal4ever]

Hello!

I was diagnosed with pernicious anemia in July 2024. I have been being treated with B12 shots since July. I originally was being treated with cyanocobalamin (originally every day, then every other day, then 2x/week) and recently switched to hydroxocobalamin injections about 2 weeks ago.

Since July, several of my B12 deficiency symptoms have resolved. I no longer have pins/needles or nystagmus. However, I have begun to have new symptoms since August/September 2024.

Since August/September 2024, I have developed bilateral flashes and floaters. I have never had this issue before. I am 26 years old and was previously healthy before developing the B12 deficiency. I went to the ophthalmologist and my exam was normal. I have also had worsening dizziness, fatigue, and brain fog. Additionally, I have been experiencing worst acne of my life. The acne is mostly around my mouth and nose and was termed "perioral dermatitis" by a dermatologist. I have also been sweating more than normal.

Why are the B12 shots creating a new host of issues? The vision flashes and floaters symptoms especially can be debilitating. Since July and receiving the B12 shots, my B12 levels have since normalized. My folate has always been normal.

I have not been taking cofactors with the B12 shots. Is folate actually necessary? Even if I am not deficient in folate? What type of folate is best if so?

This week, I received a lab back that I was severely deficient in biotin. Could biotin be causing the flashes and floaters? I understand biotin deficiency is linked to acne. Could it impact the dizziness, vision problems, fatigue, etc.? Would the biotin deficiency occur as a result of the B12 deficiency?

Are there any other cofactors to take with the B12 shots? This has been a very difficult journey to recovery.

Thank you very much in advance. Any advice or thoughts is greatly appreciated.

[Jillymo]

Hi,

I have never suffered with nystamus but do have the flashes and floaters which my opthalmologist diagnosed as posterior vitreous detachment (PVD), where the gel inside your eyes changes. I have been refered to the retinal clinic and given paper work which gives instructions to immediately attend the eye clinic if the symptoms get worse. Are you on any other meds beside the B12 ?

Your worsening symptoms could be reversing out ( healing ). Thankfully I didn't suffer with acne but did have the sores at the corners of my mouth. I am not able to advise on the folate as mine's prescribed me. I am sure another forum member will advise you.

The biotin deficiency is interesting, I just googled it and came up with the following, note the optic atrophy.............

The clinical presentation of biotin deficiency involves abnormalities of the hair, skin, nails, and the central nervous system. Seizures, hypotonia, ataxia, optic atrophy, visual deficits, sensorineural deafness, and developmental delay (in children) are some of the neurologic manifestations.

Do not neglect the eye symptoms, if any changes do get it checked out......

Seek further attention if you notice any of the following :

* A sudden shower of new floaters

* Increase in flashing lights

* An area of missing vision, like a curtain coming across.

[disneygal4ever in reply to Jillymo]

Thank you very much for getting back to me! I went to the opthalmologist and was told my exam was normal so I am not sure. Might be worth taking biotin with the b12 shots to see if that helps? Do you take any cofactors with your b12 shots? Thank you!!

[Jillymo in reply to disneygal4ever]

Flashing in the eye is not normal. Mine is in my right eye and worse or should I say more noticeable at night.

I take Biotin, B6, an easy iron tablet, vit D3, magnesium & potassium plus K2 and various things to heal my gut. We are all different, try and find what works for you.

[disneygal4ever in reply to Jillymo]

Thank you!! I appreciate your help

[Nackapan]

It maybe the switch to hydroxcobalamin??You usually need hydroxcobalamin less frequently to cyanocobalamin .

I've only read this no experienced this .

My friend in Canada certainly. needed fewer hydroxcobalamin injections.

She went back to cyanocobalamin as more available and found little difference .

I have however experienced many vision problems.

I haven't labels.

Floaters

Pattern glare

Unable to focus

Unable to read on paper

Unable to watch TV

Unable to use a laptop

Vertigo

Balance issues

To name a few .

Alot has resolved .

Took time though.

Most got worse in the first few months.

I also had the acne you describe on my hairline lips face sbd neck.

This is s known side effect of high levels of B12 being injected .

It does improve and i very very rarely get the odd one now a few years in.

Don't attempt to squeeze.

Kerp them very dry with a spot remedy or alcohol wipe.

Do get your eyes checked.

I saw 3 levels of optometrists .

My eyes are healthy.

For me it's the messaging from the brain gone wrong.

I also saw a Nero opthalmologist after an 18m wait .

Nothing new to say .

Optic nerve healthy.

I also had brain Mri's to rule things out fortunately.

Before B12 deficiency.

No other medical conditions.

No medications taken .

To this date nothing else found to treat

As for folate .

In the NHS they recommend all women of child bearing age take 400mcg folic acid daily .

Your biotin obviously needs correcting.

Interesting.

I never had that tested .

VitD

Ferritin

Iron went low so initially had a prescription for that .

Then have found a suitable maintenence dose.

I go by bloods but fluctuations in keveks are normal.

I'm assuming your diet includes all the nutrients your body needs.

My daughter nearer your age does take a multivit and she's has folic acid and vit d daily.

Her vision never affected by vit B12 deficiency.

It's very individual how thus deficiency affects our bodies .

I found specialised physiotherapy good for the vestibular disturbances .

Also dud eye exercises .

Cawthorne exercises help.

Have you been referred to a neurologist?

Try and ride the storm aad get all the medical checks you can.

Hoprfully it's all part of nerves waking up and will settle .

[disneygal4ever in reply to Nackapan]

Thank you for your response! I started having the flashes and floaters about 12-16 weeks before taking the hydroxocobalamin, so it makes me think that the hydroxocobalamin is not causing the problem. I appreciate your insight!!

[helvella]

For anyone who is taking, or decides to take, significant doses of biotin, be aware that it can affect numerous blood tests. Definitely some Free T4, Free T3 and TSH (thyroid) tests. And some tests rise, some fall - you have to know exactly which tests to know how they will be affected.

It is the test itself that is affected, it is not that biotin changes levels of, say T4, T3 and TSH, within our bodies.

Not all tests are affected and it is the technology of the test itself - not what the test measures.

My blog was written to try to give some information to people approaching blood draws so that they can stop the biotin and avoid misleading results.

helvella - Biotin supplementation and testing

A short article about how and why biotin can affect blood tests. Includes information about how to avoid any problems.

Last updated 05/11/2024.

helvella.blogspot.com/p/hel...

[Parrotia]

I am 3 months into SI with hydroxocobalamin twice a week. I was told to take 5mg folate, methylfolate if you can tolerate it but I have to have Folinic acid, and a B complex and iron with a good dose of vitamin C, depending on ferritin levels. I also supplement many other things to support my thyroid and general health. I had the acne and all the other symptoms I'd ever had which are related to low B12 and a lot have gone now. With regards to eye issues it's good you've had it checked out but I was told it was natural shrinkage if the gel in the eye. It's lessened but I can't say it was related to B12.

The acne is a pain but mine wasn't too bad, just annoying, and seems to have gone now. Keep going!