Pernicious Anaemia Society

B12 at 190 now what?

My hands and feet and tingling and pins and needles. I feel like I'm in a fog. Clumsy. I hit edge of wall when going around corners and at time get the drunk step and lose my footing. Emotionally I'm a rollarcoaster. I beyond tired! I got my blood drawn Friday and got the results today (Monday) my b12 is at 190. The front desk receptionist read my lab work and said to take a b vitamins.... really? I asked to clarify that my number was 190 and the range way 225-950 and then reminded her that I haven't been seen I was only ordered blood work over the phone.... I reminded her about the cognitive and nerve issues and said she would leave a note for doctor.... no call back... call the doctor towards the end of the day.... front desk took another message and said they marked it ASAP to call me today..... no answer.

I don't want to be dramatic but I'm scared. My hands and feet are Funny feeling all the way to my knees and elbows and I feel like I'm in a fog and groggy. I don't know what to do or who to ask for help. :(this is all new to me and so much stuff I'm reading sounds like my symptoms but they all speak of permanen damage and not being able to get doctors to help. I'm overwhelmed and scared and I'm a single parent with little family. Why I can't stop crying is beyond me. I feel like a sissy. Thanks for listening. I'm in the US so I'm not even sure this forum is for me...😪

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You're in the right place. I'm from the US too. Your level is definitely low.

Since B12 is only naturally found in meat and dairy products, people who follow a strict vegan diet that avoids all meat and dairy can become deficient due to poor diet. Otherwise there are a few other possible causes for the deficiency that are not diet related. I'm pointing this out because, unless you are vegan, you are most likely deficient due to a non-dietary cause. That means popping some vitamin pills are not going to solve your problem.

You should insist on having an appointment with your doctor to discuss your test results. (I'm surprised that wasn't automatic. Why were the tests run?) At that appointment you will be attempting to gauge your doctor's level of knowledge about B12 deficiency.

If you have a knowledgeable doctor, he or she will probably want to run some additional tests. These could include homocysteine, MMA, parietal cell antibodies, and intrinsic factor antibodies. Your folate level should also be tested if that was not already done.

Regardless of whether additional testing is done, you do have a deficiency that should be treated without delay. You may need to ask for B12 injections. Some doctors are reluctant to offer them even though they are the most effective treatment available.

The only pieces of advice I can offer are to make sure you request copies of all your test results (with the reference ranges) and, if at all possible, bring a friend or family member with you into the appointment. They can serve as an extra set of ears to the conversation. Sometimes that helps.

Also, I know it is scary to read that the nerve damage can be permanent, but I just wanted to let you know that it isn't always permanent for everyone. If you can get treatment promptly, you stand a good chance of recovering.

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Hi Amanda_ everything that Galixie has said above would apply equally if you were here in the UK and I just hope your doctor will immediately start you on a course of B12 injections every other day until there is no further improvement.

It would be good to know what your Folate level is as this and B12 help your iron to make red blood cells amongst other functions in the body.

I wish you well

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Do get an appointment with your doctor as soon as you can, B12d symptoms can feel really scary at times. I remember crying down the phone to my GP a few years ago when I could not feel my arms and legs,my tongue was sore and swollen ,my head felt strange and a whole load of other things were going on all at once, I was on my own and really frightened so I started to try and find out as much as I could about the condition and slowly it became a bit less scary and a bit more manageable . I hope you can get some answers soon and start to feel better,it can take along time to turn the corner but keep going and there are a lot of kind people here willing to listen when you are worried.

All best wishes to you

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Im in the US also. You are in the right place!!!

As others have said, make sure your doctor tests your, folate, iron and potassium. When they test iron, ask for a complete iron panel not just a single iron level, as that single iron panel will not show your iron stores, which is called ferritin, which i had never even heard of prior to joining this forum.

Treatment is going to include b12 injections not pills. Super high dose pills may or may not work for maintenance after treatment and your symptoms have resolved but they very likely wont touch your symptoms now.

Have your doctor do a comprehensive metabolic panel (CMP), complete blood count (CBC), folate and Vitamin D test. Not aware of any b12 def/vit d def connection but possible that since you have likely felt unwell for a while you may not have been engaging in outdoor activities.

I am sorry you are feeling so unwell but know you are in the right place for advice and support.

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You couldn't have got any better replies. I would just like to add that I suffered from depression for 19 years and been on various tablets for it.

My Gp discovered I had very low B12 and I was put on B12 injections (the norm is 6 loading doses) then further injections depending on your Gp (most will say 1 every 3 months after loading doses). I was put on 1 weekly and after about 3 months my depression vanished

Low B12 can cause depression.

Don't worry about nerve damage, injections make a huge difference and nerve damage can be reversed with injections if not totally gone. You will feel a huge difference but I already know most likely after 6 loading doses your Gp won't agree to 1 per week so if you want to get better you will most likely need to self inject. See what your Gp says first.

It would be good if you ask someone to post on here the guidelines of treatment for low B12 with nerve (neurological) symptoms.

Clivealive posted them on the forum few days ago. (Clive could you post them on here please).

Worse case scenario, if your Gp doesn't agree you'll have to buy and self inject. They're not expensive to buy and it's easy to self inject. Watch YouTube videos on how to, its very simple.

If your Gp doesn't agree to treat you as per NICE guidelines you'll have to do it.

Your can ask for further help on this forum if you need any time.

You're in the right place. Some good people with very good B12 knowledge on treatment.

Don't be scared, just do what you have to.

You will most likely need to take Folic Acid tablets together with B12 injections as they go hand in hand.

Tell Gp to test your Folate (Folic Acid) levels if he hasn't done so and it's best to get your Iron (Ferritin) and Vitamin D levels checked as they might also be low.

It will take a bit of time but you should feel much better in 2-3 months with the above.

Best to print out the NICE guidelines for your treatment to hand in to your doc on your appointment so he's less likely to refuse as most Gp's don't have this knowledge.

You're not alone, you'll get a lot of help on this forum.

Wish you all the best.

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