Worse symptoms after injection - Pernicious Anaemi...

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Worse symptoms after injection

15 Replies

Hello,

I have been diagnosed with PA and have been taking injections for 3 months now (twice a week). Is it normal to have worse symptoms the day you take an injection? The tiredness and the dizziness is really bad on the day of an injection.

(I have read some other people asking the same questions but they are all feeling worse during the loading phase etc.)

15 Replies
Nackapan profile image
Nackapan

It seems to vary. I'm on every other day at present 'until no further improvement. Some days I really feel like I'm getting somewhere. Friday after my injection got worse again. Stagger returned and buzzing head vision bad and light sensitivity in artificial lighting. I was diagnosed in October 2018 with b12 deficiency. I've read many times on here it's a sign of repair. Hope so as at times very hard to deal with. Just trying to get a levrl of functioning like cooking a meal, driving , shopping even if it's only one thing a day. So far I've progressed to a short walk a day. I do hope it settles for you very soon.

Gambit62 profile image
Gambit62Administrator

there have been lots of people who have mentioned that maintenance doses leave them wiped out for a day or two - not just something that happens during loading doses.

Nackapan profile image
Nackapan in reply to Gambit62

Trouble is when you are on every other day it seems you are wiped out all the time

Gambit62 profile image
Gambit62Administrator in reply to Nackapan

Nackapan, I understand that you are having a hard time and the period of loading doses can be difficult for some people but it isn't the same for everyone. some people notice nothing during loading doses and some people actually notice significant improvements. We are all different

Nackapan profile image
Nackapan in reply to Gambit62

Yes I realise that. I'm not on loading doses however

Nackapan profile image
Nackapan in reply to Gambit62

I'm very pleased and have said to all that already making good progress. I answer to alot of posts giving support where I can

fionasloane profile image
fionasloane

I've had similar problems, but found that only injecting half a dose at a time solves the problem. A waste of the B12 as I can only use half an ampule, but it works for me.

27Protons profile image
27Protons

Its worth remembering that when you fix a nutritional deficiency your body will use the opportunity to do things it postponed like repair damage so things may appear to get worse before it gets better.

Are you supplementing firstly with the other B vitamins and has your iron and folate levels being checked especially if you had macrocytic anaemia as your body will probably be making new red blood cells.

Have you looked into Coeliac disease or IBD? Just in case there some other nutritional deficiency here too.

in reply to 27Protons

I'm going to a B12 clinic in The Netherlands so I'm aware of a lot of stuff and luckily I can ask stuff there. I have been checked for Coeliac and IBD and nothing on that front. I am taking folate on the day that I inject (as instructed by the internist in the clinic). And besides that I take a generic multivitamin and vitamin d daily. And my iron levels were good.

Pretty much everything has been checked and nothing has been found. Other than that the clinic that is treating me based on PA symptoms.

27Protons profile image
27Protons in reply to

When you say checked were you told everything was normal? As many doctor just tell you this when in fact your just above the minimum for a nutrient (I suspect this is due to the minimal amount of education on nutrient doctor have) furthermore the minimum are probably set too low since it was likely based on preventing the most notorious & separable problem due that nutrient from research done largely by the mid 20th century e.g. Pellagra, Beriberi, Rickets, Scurvy, pernicious anemia (megaloblastic anemia) and so largely excludes levels needed to prevent neurological symptoms.

in reply to 27Protons

I have all the results and it shows the boundaries where it should be in between. Is there anywhere where I could find more up to date accurate boundaries for the blood result values?

27Protons profile image
27Protons in reply to

Unfortunately I’m not aware of anyone really addressing the issues of minimums being too low or issues of one size fits all blood test ranges when many nutrient should be adjusted for age (e.g teenage as they are still growing) and gender as a whole although I have come across clear issues with calcium (it should not be a 1 size fits all - parathyroid.com/blog/normal... ) and vitamin b12 (pharm.ox.ac.uk/publications... - this study thinks the minimum should be at least 300 pmol/L but could be as high as 500 pmol/L which it apparently is in Japan although I have found any Japanese guideline to independently back this up .

Unfortunately I’m not aware of anyone really addressing the issues of minimums being too low or issues of one size fits all blood test ranges when many nutrient should be adjusted for age (e.g teenage as they are still growing) and gender as a whole although I have come across clear issues with calcium (it should not be a 1 size fits all - parathyroid.com/blog/normal... ) and vitamin b12 ( pharm.ox.ac.uk/publications... - this study thinks the minimum should be at least 300 pmol/L but could be as high as 500 pmol/L which it apparently is in Japan although I have found any Japanese guideline to independently back this up .

27Protons profile image
27Protons in reply to

Also just out of curiosity do you live in The Netherlands and have been referred to specialist B12 clinic or have you found this B12 clinic yourself?

in reply to 27Protons

I have measured my B12 levels two years ago and found out that they were too low. I then followed the advice from my GP and internist and just took B12 tablets after the loading doses. After these two years and a lot of problems and doctors (even a psychologist) I did some more research about low B12 and found the specialized clinic here. So I asked for a referral from my GP, which I got. So I have found the initial low B12 myself because I went to get a blood check for it and then found the clinic myself.

27Protons profile image
27Protons in reply to

Why were you treated with Vitamin B12 tablets? As in the UK (as I’m unsure which country you are in as some use high dose Vitamin B12 tablets) unless the cause of your deficiency had a high chance of being diet related i.e you are a Vegan/vegetarian you should be treated with injections.

Then the dizziness could be magnesium deficiency - try magnesium oil spray (you can buy it premade but its much cheaper to make it yourself with magnesium chloride added to water). Have you had your red blood cell magnesium levels tested (the serum magnesium can be unhelpful as your body will take magnesium from elsewhere so the heart has enough)?

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