Increased Symptoms: I have had... - Pernicious Anaemi...

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Increased Symptoms

emmacaemelyn profile image
10 Replies

I have had pernicious anemia since 1996 and it has been well controlled with injections every 8 weeks. Approximately 12 weeks ago, I started to experience an odd feeling of having a really fuzzy head, almost as if my body was detached from my head. This has been ongoing and is accompanied by headaches, increased tiredness, palpitations, feeling cold and a general feeling of my body aching and my arms and legs feeling really heavy. I am having trouble concentrating, keep mixing up words and feel generally unwell. I have seen my GP twice and had a large amount of blood tests including iron levels and detailed thyroid. All are normal. My b12 was fine and showed high levels in my blood. I have now been referred for a 24 hour heart monitor and CT scan. I’m really worried now it could be sometime serious. However I am starting to wonder if it is related to my pernicious anaemia as so many of the symptoms are the same.

Has anyone ever had something similar of being fine for many years, b12 levels being maintained but suddenly becoming unwell and experiencing lots of symptoms?

Emma

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emmacaemelyn
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clivealive profile image
clivealiveForum Support

Was your Folate level tested emmacaemelyn ?

I hope the tests help resolve the problem and I wish you well.

emmacaemelyn profile image
emmacaemelyn in reply toclivealive

Hi Clive. Thanks for your reply. Yes I had full iron tests and my folate was fine. I forgot to mention that I also take daily Omeprazole. Could that be affecting my PA? Could I have high levels in my blood but not be absorbing it?

clivealive profile image
clivealiveForum Support in reply toemmacaemelyn

No - if you are having injections of B12 the Omeprazole will not affect it.

I've been on a PPI for twenty odd years.

tnkarthik28 profile image
tnkarthik28 in reply toclivealive

@Emma, wish you a speedy recovery

@clivealive, a clarification on taking PPI which u mentioned here("if you take B12 injection Omeprazole will not affect it")

i thought with PA/Atrophic Gastritis(i hv both) the person will hv low B12. Also low stomach acid due to anti GPC attack. so we should not take any kind of PPI as it will further reduce the stomach acid irrespective of B12 intake in the form of injection. is my understanding right?

clivealive profile image
clivealiveForum Support in reply totnkarthik28

The B12 injections bypass the stomach altogether by getting it straight into the bloodstream - therefore PPI's, antacids and a host of other medications and causes that affect absorption via the gut will have no effect.

I hope this helps

tnkarthik28 profile image
tnkarthik28 in reply toclivealive

dear clivealive, thanks for ur reply. i understood but still fully not clear on taking antacid pills. i always thought Omeprazole will further reduce the little stomach acid(due to Anti GPC attack) we have. so with this fear i am not taking any Omeprazole for my atrophic gastritis inspite of monthly B12 iniections. may be its wrong. isn't? pls help.

clivealive profile image
clivealiveForum Support in reply totnkarthik28

Normally we need a high level of acid in our stomach to process the Vitamin B12 we source from our daily food.

If for any of a handful of reasons (including gastric surgery, PPIs, Antacids, antibiotics etc) our acid level is reduced and cannot process the Vitamin B12 we source from our daily food we have to have it injected.

Having the B12 injected (as you, I and millions of others are) completely bypasses the stomach by flooding the bloodstream directly.

If you need to take the Omeprazole as prescribed by your doctor please take it as it will have no impact on your B12 level.

tnkarthik28 profile image
tnkarthik28 in reply toclivealive

Understood. Thank you so much

sbadd profile image
sbadd

Wow your symptoms sound exactly what ive had just after my loading doses recently, i dont have PA mine diet related but i had the head pressure and dizziness which i ended up having ct on brain as i was that worried that i had something sinister, 8 weeks now since my last loading dose and most symptons gone apart from the heaviness in legs and arms, i now have a slight cold feeling in lower back as well so feeling very anxious and have just had palpitations today again after they had stopped around 3 weeks ago, not sure why yours have started, very strange considering its been under control, interested to follow your post though, there is a few more experienced people on here that im sure will have some advice, im at wits end with mine starting to think i may have pinched nerve in spine but i have no pain just heaviness, hope we both get some answers

PaintLadie profile image
PaintLadie in reply tosbadd

This happened to me...long story short. My injections were expired. I had been sold bad Methylcobalamin and had not realized it for it so long. I started going back to see all the crazy specialists that would all tell me I was fine even with all the symptoms. I don't know why it took so long for me to realize it was my PA. I guess I was under the impression it was controlled, all my blood tests had high b-12 levels, and I thought for sure something else had to be going wrong. I purchased the Methylcobalamin from my doctors office who had purchased from a site in California. It was the first time I took Methylc form. It worked at first but after being on it for a year my symptoms returned. I seriously thought I had to have MS. When I needed more Methylc I went to see my doc this time rather than the front desk. She was going to sell me what they had in the office until she noticed it was expired by 9 months. Yeah! They don't give refunds for that....

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