First week of loading with B12 is ove... - Pernicious Anaemi...

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First week of loading with B12 is over...

LolalalalalaLola profile image
9 Replies

Hi every one, well my first week of B12 injections is over, the second week starts tomorrow. I'm a bit disappointed as all my symtoms seemed to have got worse, I had been warned this could be the case. I'm taking a good multi B complex to go along with my injections as recommended by members. I hope my second week goes better but hey, it's taken years to get like this I can wait to get results.

I see my doctor tomorrow to get results of a blood test for celiac's, I'm going to ask for an extra weeks loading as my nerve damage doesn't seem to be any better in fact it seem to have got worse especially in my hands and feet.

Those of you who have had this happen to them, can you tell me how long it took for you to see results. I thought I might have had a bit of a spring in my step by now but I still feel exhausted :0(

I look forward to hearing from you...

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LolalalalalaLola
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PAS_B12iom profile image
PAS_B12iom

The longer you've been experiencing neuropathic symptoms, that have been left untreated, the longer it takes to recover. It's probably too early to tell whether any of the nerve damage will be permanent.

While you are receiving treatment I would recommend a good b complex, iron, folate, potassium and a joint supplement.

LolalalalalaLola profile image
LolalalalalaLola

Hi PAS_B12iom!, I've just started on a good B complex I will go and get a joint supplement, do you know why the symptoms get worse, is it your body repairing itself? Thanks for replying to my post 😊

in reply to LolalalalalaLola

Hi Lola,

Yes in a way its repairing that makes you feel worse. As you know its taken years to become depleted and it will take some time to undo damage done. How long, depends on the person, and damage,

Kind regards,

Marre.

LolalalalalaLola profile image
LolalalalalaLola in reply to

Hi Marie, thanks for your reply. I went to my doctor this morning to get results from blood taken to test for Celiac disease unfortunatley my results hadn't come back. I did ask for my injections to go on longer as I had been suffering with nerve damage for a long time, the doctor said no, my body needs time to repair by the end of my two week course I should be topped up :0( I did tell her I couldn't get toxic with it as I would just pass any overload in my urine but she was adamant that I wouldn't need the extra injections as my B12 wasn't very low... Anyway I asked for my blood test results.

I said I would post them 😊

She said I was negative for intrinsic factor antibodies and negative for parietalcell antibodies

Serum vitamin B12 (XaDsm) below range 193 ng/L (211. 0 - 911 . 0) Outside reference range

Note new B12 reference range from 03/06/13

Serum ferritin level (E24r). 28 ug/L. (15.0 - 290.0)

Serum folate level (42U5). 6.1 ug/L (3.0 - 14.4)

She also said I was ANF antibody positive so I will do a bit of research on that...

Phew...

Thanks again Marie! it's nice to know you can get advice from people who know first hand about these things

in reply to LolalalalalaLola

Hi Lola,

Your ferritin and folate levels are not high, so it can help top take a multi vitamin just to try to keep all a bit in balance.

I've not heard of ANF antibody..you do not mean ANA?

Some info on ANA here:

labtestsonline.org.uk/under...

Anyway still more results to wait for, hopefully you will start to feel a lot better in time, but it can take time..I went back to GP saying you got this all wrong, its doing nothing, but some 3-4 months later I really did feel so much better and started to rely on the B12 to keep me well.

Hoping for good results for you re celiac,

Kind regards,

Marre.

LolalalalalaLola profile image
LolalalalalaLola in reply to

Thanks Marre, that's good to know 😃

Secondchance profile image
Secondchance

How about asking GP about BCSH, BNF and NICE guidelines for neurological symptoms? I would make sure it is on record that you have requested this and then at least you have a chance of 2 monthly injections as maintenance in the future. Interesting to see the new reference range- much higher than most. What area is that in?

My symptoms worsened before they got better- took about 8 weeks before they were more or less back to normal. I did feel more alert though pretty quickly after starting the jabs though. Everyone is different though.

Good luck!

LolalalalalaLola profile image
LolalalalalaLola in reply to Secondchance

Hi again, I must admit I've felt dreadful since having the B12 really weak and tired everything was an effort, but today I seemed to have a bit more energy, so maybe it's kicking in 😃 like you I have felt more alert, only had two headaches no miagraines since loading started so things are looking up.

I will do what you say with my GP and NICE guidelines see if what she says.

Thanks for your advice I really appreciate it. 😊

Secondchance profile image
Secondchance

Great, glad to hear it.

Good luck and make sure you bring someone with you for support.

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