Side effects

[Milley2]

Can to much b12 cause side effects or similar symtoms of the defiency ?

Like prickly skin nausea weight loss anxiety ear hissing ? Weight loss a lot no appetite burning arms

I know these are the symtoms of a def

My Gp seems to think my b12 level is high enough now as on monthly

But I was si myself as well

She said stop as the above symtoms can also be to high a level of b12

I researched but nothing really says this apart from skin rash etc ?

I stopped 19 days as she got me worried

As she said I’ve enough in my body to reach the cells now ?

Intrin neg

P cell neg

PA she says I do not have

So she said I can absorb from food now ?

How will I know if this is the case

She says the serum b12 test nov is accurate and there isn’t another test to check what’s being used

My original level was 124 in June had h pylori which has gone now

So prob that depleted my b12

Had 10 b12 injec at Gp over 4 weeks

Then one in aug as my monthly one

None since but a tablet

As Gp said I was loaded up and it’s unusual to have so much ?

I emailed Gp today to book my b12 in I’m not prepared to daily live this way

I’m so frightened

Ear hissing rumbeling all day drives me insane really insane I can’t cope no more

People say different things that yes you can

Take to much or no it’s impossible

I’ve found little info on this very scared I am

I’m virtually not doing nothing

Walking is a struggle

My tummy is full of anxiety ?

Yet every symtom you research

It comes up b12 def

Feel like I’m going insane with it I really do

Need help

So I SI myself

I stopped as she said my symtoms ate of that of a to high level ?

She doesn’t know I SI myself as I didn’t want my monthly one taken away

I’m suffering bad

I have Jyst done a b12 this morning

As I could no longer stand the arms burning ear hissing

I’m hoping this calms down again once I inject again

I’ve booked my b12 next week also

I was weekly so I think I’m going to do twice a week until I feel better

Rather than nothing for 17 days now

Surely Gp and consultants are aware of more frequent jabs ?

I was told your ok now the symtoms your getting isn’t b12 as your now not defiency ?

I’m scared

Terrified at this horrific tingely and burny feelings and the ear hissing

Any help or advise please

Folate is ok 19.1

I also can’t take folic acid or folate

As my tummy gets sick

I can only take from food source

All other bloods are ok

Pottassuim mag etc all goid levels

[Nackapan]

Ive had all that and it can get scary. I assume its stirring up your nervous system in healing. Or your symptoms are simply returning as injections stopped .

Your doctor should know even if you tested negative for antibodies you could still have an absorption problem or even PA. I once on injections many need to keep their b12 levels high. So suddenly stopping sounds unwise. Unless tiy are well and can now absorb it. ??

Hipylori might have gone but it takes time to absorb again if you can. Injections will cause no harm. I would go on the side of caution.

Go by your symptoms. It is very early days for you and under treatment will only prolong it. What is the harm in continuing with monthly I jections o do not know what the doctors are doing. Are you on a trial of tablets or what . You are still obviously ill. Has the doctor just abandoned you. ?

The only side effects I've had are tinnitus

Headaches and acne from the actual Injection

I'm 2 years in and finally my injections s just happen and often dont have any reaction but stops the nasties from returning. Still havi g daily symptoms though and not function ing at an acceptable level by any ones standards.

Healing is alot lot slower than we are led to believe.

[Milley2 in reply to Nackapan]

So you saying tinnitus it have yiu ? From the injections as that’s my worst symtom the tinnitus ? May be she is right that to much b12 caused the hearing tinitus then or worsened it ?

[Milley2 in reply to Nackapan]

Even if I have monthly I only getting to a few days without symtoms I’m fearing SI b12 may be causing the hissing tinnitus ? Do yiu think

I know it’s a symtom so I assumed that

Niw im confused could it b the b12 thats agitating it

[Nackapan in reply to Milley2]

I think its stirring up your central nervous system. I dont actually know but it was a side symptom for me that I treated as part of the healing process. I still have it and at times it's now worse before an injection.

[Milley2 in reply to Nackapan]

I have monthly injections normally But Gp said my level was ok now

I can’t get past day 16 today snd have been terrible I still think I need alternate or weekly twice a week

It’s so difficult to judge how many one needs

B12 I understand takes 48 to 72 to produce new cells so it’s scary the symtoms in between and knowing what to do and how frequent

Gp does not know what to do next for me

And says we have tested everything yes yes I says so it’s the b12 issue still everything else is normal I not sure how much more I can take I’m very weak

[Samsungtracy in reply to Milley2]

Hi ,

Are they testing active b12 , as a separate test or just total b12 ,

Active b12 makes up 10-30 of total b12 ,

I have high total b12 but low active b12. I had to get a private test for active b12 as nhs don’t routinely test for active only total.

I have started self injecting , not something I like but it’s relatively cheap , someone on here has the links for what you need.

If you haven’t had active b12 check I suggest you get that tested.

[Milley2 in reply to Samsungtracy]

I had serum b12 that’s all I know she said it’s the only test available and is accurate ? Where would I get this test

Would it be skewed I’m now SI myself

[Milley2 in reply to Samsungtracy]

I’m self injecting so assuming any tests now would be skewed

[Samsungtracy in reply to Milley2]

I had it done through medichecks

I’m unsure if it would skew your results, possibly , but it’s a good marker to see how much active b12 is there.

Also I take it your MCV or MCH was ok. That’s the size of red blood cells. Sometimes larger with pernicious anemia, mine was high .

[Milley2 in reply to Samsungtracy]

Yes was told ok but was on folic acid at that time on the same week of b12 treatment so I think it masked it somewhat I was very unwell am worse niw and ca t see a way out of this hell

[Samsungtracy in reply to Milley2]

Have a read of this re the b12 testing issues

pernicious-anaemia-society....

[Milley2 in reply to Samsungtracy]

Yes have read little unclear still though whether testing would be ok as already on b12 injections

[Nackapan]

Yes I would decide how often you think and give it a trial. Log your symptoms. Meanwhile write to your gp.

List your symptoms

Sat worses since no I jections

Ask for injections back ad levels mean nothing whilst on them

If they found nothing else they need to treat what they havd diagnosed!!

I akdk find it difficult to know how often. But I decided then stuck to the regine and log things.

I do have a prescription from the doctor.

I also want ig on my medical notes.

[Milley2 in reply to Nackapan]

I think I’ll start with 3 a week then reduce it after 2 weeks of that Monitor my symtoms

I was never this bad even when first diagnised

I feel dreadfull

[Nackapan in reply to Milley2]

No I was the same. Worse before any improvements . Its horrid TC

[Milley2 in reply to Nackapan]

Isn’t it How lint did that last ? How much b12 loading did you have any top up ? Before it ceased a bit

[Foggyme Administrator]

Milley2. I've left a reply that covers some of these issues in your post above this one.

[Parksy]

Tinnitus is really unpleasant to cope with. The thing that we get caught up in is keeping up our b12 levels which is essential however if you can’t absorb b12 for whatever reason you may not be absorbing all sorts of essential vitamins and minerals that are very detrimental to feeling good. I found out the hard way that not getting enough co factors for the methylation of the b12 also vitamin D deficiency can make you feel dreadful. Also I take magnesium, omega 3’s plus others.

[Milley2 in reply to Parksy]

I was advised in here to just do b12 other co factors aren’t needed and can effect the b12 ? Do to just do b12 that was yesterday

I’m not vegetarian etc always ate well all other bits seem ok so must be absorbing something like folate 18.3 I’d I wasn’t able it would be very low

[Parksy in reply to Milley2]

For one b12 utilises potassium and if you don’t get enough from food you’ll get hypokalaemia. Vitamin D, magnesium, vitamin c and omega 3’s aren’t co-factors but will help you feel better.

[Swanagegirl]

I inject monthly. The only side affect that I have is I often start to get heart palpitations (a day or so after injections) . This is because the B12 injection can cause my potassium to drop. To remedy I drink a litre of V8 vegetable juice the original version. I drink the whole lot in a hour & usually feel much better & palpitations stop. By day 3 or 4 post injection I have much more energy.

My two young adult sons both also have monthly injections no issues for them at all.

[lucasussex]

You sound like me! What is your B12 active mine is 150 I have low folic acid and VIt d I got rid of H pylori now thinking dealing with sibo and histamine

[Milley2 in reply to lucasussex]

I’m on injectiins SISo b12 level is high

Dint know the active

But serum was 124 in July this year

Nov was 1500 false high

H pyl fine now

Jyst dealing with

B12

I think where Gp said stop

I’ve pretty much gone so low again

Ppi meds etc and damaged tummy lining

Ppi meds where vile

Tummy better now

But b12 low causing issues wright loss no appetite etc gastro issues slight nauseau

Ear hissing