Pernicious Anaemia Society
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Feel worse rather than better!

I have had my sixth and final injection of my loading dose this morning and my next one is now not due until November.

From what I have read on various posts I understand that it can take some months to start feeling better but I honestly have never felt as bad as I do today. I feel quite spacey and 'detached' particularly when I'm driving. I was getting quite panicky on the way home as I felt quite faint, but panicking doesn't help the spacey feeling!

Has anyone else felt worse after B12 loading dose? I feel completely unable to deal with anything, my job, my kids, everything just feels too much

I'm due to see the doctor again in a couple of weeks but I'm now worried that the low B12 is a symptom of something much more sinister. I realise that how I am feeling isn't going to be helped by worrying but I think I thought I would feel great after my loading dose!

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Lots of us have felt very much worse during and after loading, you only have to scroll through past posts to see. I was having palpitations at my worst moments and lots of pins and needles to name just a couple of things so you are not alone in feeling under the weather. Easier said than done i know but just try to relax and see if you feel better. Try doing things to take your mind off of it, reading or knitting etc. Your body has had a massive dose of something it has had to learn to do without for a while and is more than likely reacting in this way, we are all different in how it affects us, but if you feel unable to cope with the after effects do contact out of hours gp or hospital as no one wants you to suffer unnecessarily.

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Thanks, I don't feel so bad I need A&E I just feel weird and drained. But relieved to hear that others have felt the same, that reassures me 🙂

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Hi Nicoleflower81

According to the N.I.C.E guidelines loading doses should "continue until there is no further improvement" in neurological symptoms which include mood changes and disorientation you mentioned above so one option would be to list them and go back to your doctor asking for the injections to continue.

google.co.uk/url?sa=t&rct=j...

Click on the link, then on "Scenario: Management" and scroll down.

As Lisahelen says it is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with. I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

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Thanks for the advice, I definitely need to start logging day by day as some days I have definitely felt better but certainly on the day of the injection I have felt really awful.

I'm getting daily headaches as well which is quite draining. I think I had lulled myself into this fantasy that I would have my loading dose and be feeling as fresh as a daisy but I'm quickly learning that getting folate, B12 and iron levels right is a fine balance

Thanks again 😊

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It's hard to remember now after forty five years but I do recall feeling like a walking Zombie before the treatment started back in 1972.

Somewhat ironically you are probably feeling worse because you are getting better so try not to stress too much as that only uses up the B12 quicker.

My doctor actually threatened that I would have to eat raw liver three times a day..... :)

Do you have any idea why you became B12 deficient in the first place?

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I have no idea, I started having stomach problems about 10 years ago but an endoscopy just revealed inflamed stomach lining. I had a further endoscopy and barium swallow about 2 years ago because I felt like I always had a lump in my throats and constantly felt like I had trapped air in my chest. The results of this were inconclusive but ruled out tumours etc

I have also had investigations for pins and needles in my fingers.

What can cause PA? It seems like my symptoms have been looked at but never the cause of the symptoms

I developed Iron anaemia after I had my children 6 years ago but that was due to blood loss

A prescription of liver sounds awful!! I'd take injections over that any day

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Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages

.

Can you "see yourself" among any of the above people?

Pernicious Anaemia is more specific than iron deficiency anaemia and is diagnosed only after tests on your Intrinsic Factor are carried out which I guess you doctor hasn't done, or suggested doing, yet. He or she may wish to eliminate other causes first.

It's my bedtime now so I'll bid you goodnight.

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I have a family history of PA and iron deficiency anaemia so guessing that must be it.

Goodnight 😊

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Hi there ☺... I've only just been diagnosed with PA 5 weeks ago... And felt all your symptoms and more... And it's really scary...you seem to have neurological involvement which means you need a injection every other day until there's no more improvement.. I took the guidelines to my doctor, and he had no choice but to put me on every other day injections.. Now I'm injecting myself every other day and starting to feel a difference.. I know I've maybe got a wee way to go.. And yeah it's scary when I get off days... But I know now there's light at the end of the tunnel... And lots of great people on this forum when I feel despondent... I hope you can get the help you need... All the best for the future ☺...

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Thank you!! I'm going to see my doc next week armed with the NICE guidelines and hope they will continue to treat me alternate days until I feel better. The more I read on this forum the more my past symptoms are falling into place, especially the brain fog, at one point my word finding and sentences were coming out in such a jumble I thought I was getting dementia!!

I hope you feel better xx

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You might need to up your intake of calcium, potassium, and magnesium. I also started adding a folate supplement. I feel so good.

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Thanks, can I ask what supplements you recommend? And do you need to take them nasally/throat spray to absorb them?

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