Up and down after loading injections. Misdiagnosis?

[ODAAT77]

Hi everyone. After experiencing dizziness, headaches and pins and needles I went to the GP and they diagnosed low B12 ( level was 151), told me to eat more greens (I know!), gave me one injection and told me to come back in 8 weeks. When I rang back a few weeks later still feeling dreadful, a different, v helpful GP said ‘no, no, you need loading shots for two weeks. Come in today’. I had the shots, feeling very up and down during that time, and the last one was last Tuesday. On Weds I felt dreadful but over the weekend I felt great! Then I was hugely disappointed yesterday when around 12 o’clock my hands began to hurt and I became more and more dizzy and unbalanced (same symptoms as before but no pins and needles). I cancelled my work event and headed straight home. Is it normal to feel so rubbish a week after the shots have finished? All my other bloods are completely fine so PA looks unlikely but I have had the test and for coeliacs too. Should I be worrying it’s something else? I’ve seen a consultant who was very reassuring but basically said that if the neuro symptoms continue after the shots it’s likely to be anxiety. I know it’s not anxiety! Also, does anyone else find that being very tired makes the symptoms worse? I have two very young children who don’t sleep and a three-hour commute every day so I’m pretty shattered at the best of times! Any advice on how to feel a bit better sooner - less caffeine, less alcohol (gah!)? - would be hugely appreciated. And please do shout if I should be asking to be tested for anything else. The consultant recommended I take daily b12 from Holland and Barrett while they we wait for results of PA test so I’ll buy those today. Thank you, and apologies for the essay! Lou

[clivealive Forum Support]

Hi ODAAT77

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having 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.

This may explain why you have been told to "eat your greens"

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 Pernicious Anaemia (just one of many causes of B12 deficiency) for more than 47 years.

[ODAAT77 in reply to clivealive]

Thank you, Clive. That’s interesting and good to know. Fingers crossed I’ll see some more improvement soon. Amazing that you’ve had PA for so long. Makes it a little less scary for the rest of us! I’ll take my husband along to the next appointment.

Thanks again, Lou

[Nackapan in reply to ODAAT77]

I had to restart b12 injections every other day until symptoms settled

[Sleepybunny]

Hi,

I've just written a very detailed reply in link below which may have helpful info.

healthunlocked.com/pasoc/po...

B12 deficiency is not as well understood as it could be by some GPs and specialists so I'd suggest taking some time to read about it.

"dizziness, headaches and pins and needles I went to the GP and they diagnosed low B12 ( level was 151)....gave me one injection and told me to come back in 8 weeks...a different, v helpful GP said ‘no, no, you need loading shots for two weeks"

Dizziness, headaches, pins and needles would usually be considered as neurological symptoms

In UK, patients with B12 deficiency with neuro symptoms can have every other day loading doses for longer than two weeks...they can have them for as long as symptoms continue to get better.

Might be worth keeping a symptoms diary to track changes in symptoms over time with treatment.

Vital to get adequate treatment as under treatment may lead to further deterioration and the risk of permanent neurological problems

Suggest you read document below if in UK and look at my post on other thread.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Some areas of UK are using out of date local guidelines. Suggest you track down local guidelines for your area and compare them with national guidelines.

Might also be worth thinking about joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

B12 Deficiency Info website

b12deficiency.info/

"All my other bloods are completely fine "

Have you seen the actual results or were you just told they were all fine?

These days I don't trust what I am told about results unless I have a copy in my hands.

Best advice I ever got was to always get copies of my results.

Learnt to do this after being told everything was fine/no action then finding abnormal and borderline results on the copies.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society)

may be a copy available from local library service.

Sorry for not writing more but too tired.

Glad to read you're taking your husband along. Might be worth him reading about B12 deficiency before next appointment so he can speak up for you if you're having a brainfog day.