Help please: Hi, I have written a few... - Pernicious Anaemi...

Pernicious Anaemia Society
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Help please

natcap2
natcap2

Hi,

I have written a few times here to find out about how to deal with newly diagnosed PA. Everyone has been very helpful and it is some comfort to hear the experiences of others.

I have been in the loading dose phase of B12, and on the whole this has not been a good experience. The first three shots were ok, in fact so were the following three (I had two weeks in-between these as I was diagnosed just before a holiday). I did feel a bit odd after the last of the three jabs, but nothing at all to worry about. As I had some neurological symptoms my GP and I agreed to go for a further 3 loading doses. The first one of these I seemed to react to in a way I hadn't before. It was enough to scare me and delay the other doses. Having posted here about it I realised that there were certainly some people that find their symptoms get worse before they improve. With this in mind I left it a couple of weeks, and due to still having some neurological symptoms, I decided to get the next injection. At first this was ok, but about 36 hours later I started to feel very tired and tingly in hands and feet, and actually all over. Another 48 hours later I had a massive panic attack or palpitation event (for want of a better description) in the middle of the night. My heart was pounding faster than ever before. The days since this have been difficult, further palpitations, cold / shivery feeling, anxiety, fatigue and irritability.

I'm pretty sure this is the B12. Before the last injection, on the whole I was feeling better than I had done for a while, so it seemed worth the short term increase in symptoms. But this time it has really scared me. I do feel these symptoms are now starting to reduce a bit, but I worry my system has been damaged in some way, even though I believe that overdose is not possible. I am also feel a bit trapped by needing the B12 as I have PA, but my instinct telling me not to put any more of it anywhere near me.

Can anyone advise/reassure. My GP and Gastroenterologist think that people get B12 shots and feel better instantly. It doesn't help me at all that I seem not to be responding in a standard way.

Many thanks.

14 Replies
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Gambit62
Gambit62Administrator

Did you have macrocytic anaemia when you started the loading doses, and do you know what your folate levels were like?

Some patients can experience falls in potassium levels when macrocytic anaemia is being corrected. Others can experience drops in folate levels when they start on B12 injections - and the symtpoms of folate deficiency have a huge overlap with B12 but tends to come on much quicker than B12 symptoms. The palpitations does sound as if it could be something like potassium levels dropping.

Have you pointed your GP at the area of the PAS website that is aimed at helping medical professionals understand and improve the treatment and diagnosis of PA.

pernicious-anaemia-society....

natcap1
natcap1
in reply to Gambit62

Hi,

Before I had the last injection I had my folate, iron and potassium levels checked. I phoned up the GP surgery to ask if these were normal and they said they were. However, I didn’t see them myself, I should have asked for a print out and inspected them myself, which I usually would do.

natcap1
natcap1
in reply to Gambit62

I have not pointed the GP to the PAS website specifically, although I printed out the advice for diagnosis.

Gambit62
Gambit62Administrator
in reply to natcap1

was that the advice from this forum or from the PAS website itself.

The two are different

natcap2
natcap2
in reply to Gambit62

Hi,

I printed the guidelines 'Diagnosing and treating Pernicious Anaemia' from the PAS website. My GP also used the flow chart from the NICE guidelines for anaemia b12 and folate deficiency. I was diagnosed with PA by a Gastroenterologist. I had a low reading of B12, parietal cell was positive, but I was negative for intrinsic factor antibody test. My father has PA. I also have widespread atrophic gastritis diagnosed via biopsies from my stomach. I don't know what macrocytic anaemia is exactly - is this larger red blood cells? If so, I did not have this, my red blood cells were normal in size.

I believe that this has been diagnosed correctly and the treatment seemed in keeping with the guidelines.

Gambit62
Gambit62Administrator
in reply to natcap2

thanks - sorry if the question seemed a bit abrupt - just I know that some people get confused about the difference between this forum and the PAS.

It does sound as if your GP is being good and is working well with you.

The other thing to look at is whether the shots were all the same brand - different brands can use different preservatives and sometimes people will react to preservatives.

There is also the possibility that there was something else going on.

Gambit62
Gambit62Administrator
in reply to Gambit62

and yes, macrocytic anaemia is when your red blood cells are larger and rounder than they should be.

It can be masked by an iron deficiency - and it isn't uncommon for iron deficiency to occur at the same time as B12 deficiency.

natcap1
natcap1
in reply to Gambit62

Hi Gambit62,

That’s fine it didn’t seem abrupt. Thanks for your help. Will look into the preservative possibility.

It is certainly fair to say I feel a good deal of anxiety about all this now which is bound not to help. It is a bit frustrating that the medics I see seem to think I should just feel ‘boosted’ immediately with no other effects! Clearly from posts on this site this is not the case initially for some people.

I have symptoms of another autoimmune disorder going on, possibly Sjogren’s or something similar (have posted to see if others have both). I also have thyroid antibodies, although my TSH levels appear ok for now. I realise that this may still need treating and should investigate, but I can’t do everything at once. So there are certainly other things going on!!

Thanks again.

Gambit62
Gambit62Administrator
in reply to natcap1

Thyroid can be problematic even if your TSH is in the normal range so may be worth looking into that though the onset does seem a bit sudden from what you describe.

Hope you do get to the bottom of things and start to feel better.

Its not related specifically to B12 but this post might give you some ideas on handling the anxiety

healthunlocked.com/couchtob...

My first ideas were all covered by what Gambit62 said so well and you said you were tested for potassium, folate and iron.

Have you had your magnesium levels checked? A deficiency of this can produce the symptoms you experienced and is also used up quickly alongside B12 and the others.

Be aware that Magnesium is water soluble and goes out of your body readily with diarrhoea so can fluctuate significantly between blood tests.

I hope you get to the bottom of it soon. If you can rule out everything else and it still points to another deficiency situation happening as the B12 allows processes to work and use up your body's resources, it may mean hospitalising you for another jab so they can blood test you when the problem occurs to see what shortage is causing the problem at the time.

Good luck.

hello....the very same happened to me and it was caused by low potassium....the anxiety, heart palpitations and depression were unreal and i thought i was dying. But after a lot of research I discovered that your body uses potassium when it is making new blood cells and it is INCREDIBLY important to keep potassium levels up. If you do not it can be very dangerous. Now my day begins with a huge glass of coconut water, bananas, cantulope melon, plain yoghurt and during the day I drink loads more coconut water and eat dark chocolate and prunes. Other good sources are prune juice, apricots, orange juice, potatoes...google for the list.....you need 4,700mgs a day but I find i need more than that when on B12. I have stopped all injections as it was just overwhelming. Now I take a tiny sublingual dose everyday and even that is causing my potassium to plummet. I also supplement daily with potassium tablets. They are only sold in 99mgs, but talk to your doctor and ask him if he could give you slow release potassium tablets which are on prescription. I wish you well. J

natcap1
natcap1
in reply to jarlethblue

Hi, thanks for that, very interesting. I did get my potassium levels tested before the last injection and they were fine (theymight have been on the low side but I need to check the numbers). But do you mean they plummet during the B12 take up process and could possibly go up again after it has been processed? I did look up the symptoms of low potassium and I have some of them but not the constipation (sorry!). But I am so anxious it might counteract that!

natcap1
natcap1
in reply to jarlethblue

Did you get your potassium level tested and it was low?

before starting B12 it was at 4.2......i have not had it tested since but the proof is in the pudding....when I increase my potassium levels the symptoms lessen or disappear. Making new blood cells uses up mega amounts of potassium, so you need to keep the levels high. Netiher do I have constipation....in fact the complete opposite! Today already I have drank a litre of coconut water and a glass of prune juice, eaten half a cantelupe melon and two bananas and i still need more potassium. I am trying to do it through food rather than taking the tablet form. If it is any consolation everything i read says that the fact that this is happening means the 'start up' of addressing your B12 deficiency has begun. I don;t know when the need for potassium resolves. I cannot find an answer to that question on the web, so I suspect it is different for each individual. I was self injecting and also taking sublingual supplements....high doses....and now can hardly stomach 25ugs of B12 drops. Even that kicks my potassium into rock bottom. Start using high potassium foods and drinks to see how you respond. Hopefully it helps. J

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