Pernicious Anaemia Society
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Loading problems

New here. B12 of 132 with constant headaches ,pins and needles, heavy legs etc Doctor loaded with 2 injections of colabin h for two weeks, and followed by every 3 months. Was very ill a month later went to see Doc cos my neck was showing inflammation, like a goitre, at this point brought up loading dose ,which he just ignored Had ultrasound on neck last week cos now suffering like a very sore and stiff neck on both sides and sore in between shoulder blades very worried cos mum developed Alzheimer's in her 60s and she had corpal tunnel etc What to do next should I ask to be referred to haematology

6 Replies

Bit difficult to follow what is happening here. Your B12 levels were very low and that would have caused the symptoms you had, but not sure about the transition to a month later. I am not aware of reports of loading doses causing that sort of reaction so the swelling is most likely to be another condition that was going on in the background and just flared up at that point.

What were the results of the ultrasound?

Have you managed to keep a diary of symptoms. This can be a useful exercise as it can highlight what is improving and also when your symptoms start to recur and hence indicate what is the correct frequency for treatment for you.

I don't know what country you are based in but if you are in the UK then I think your next step would be to go back to your Doctor and ask them why they aren't treating you in accordance with the BCSH and NiCE guidelines - details of which are in the pinned posts that you will find to the right of this if you are using a browser and at the bottom of the page if you are using a phone/tablet.

A referral to a haematologist at this point is unlikely to be useful as you already have a diagnosis of B12 deficiency and your doc was treating it though not necessarily correctly.

Do you know if your mother had a B12 absorption problem like PA that went untreated and lead to the symptoms you describe?

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Have already tackled doc once about frequency of injections which he just shrugged off Will be going back next week and have printed off guidelines from the sites, I did keep a diary of symptoms and took them with me to previous appointments Had bloods done about six weeks after injections and b12 bloods had risen to 555 , but I said to doc that was active and inactive Was in docs this morn they were running late felt dizzy, neck very stiff and shoulder blades sore When I turn my neck hear squelching noise .My brother ,sister ,my son was diagnosed with pernicious aneamia last year my daughter borderline. Really annoyed with doc at moment cos I a carer for my husband who had a very serious breakdown two years ago and can't afford to be ill .


I think I have had similar symptoms to you. I don't know if they're related to each other but I've managed to resolve most of them to the point where I'm feeling healthier and I know none of them are really serious.

The sore neck, neck pain ( which caused the most horrendous headaches I've ever known) was due to a slight rotation in my spine which then "locked" causing all the muscles to clamp up. Trying to move my head resulted in pain and the squelching sound. 7 doctors failed to spot what took a chiropractor 30 seconds to identify. Took a few months but she freed up the muscles and they've stayed relaxed. I have to sleep on only one orthopaedic pillow. Falling asleep on more than one pillow results in headache & neck pain the following morning.

Goitre in throat. This appeared about 3 years ago, when I was living abroad and I just thought I had a saggy neck. I don't think all my thyroid hormones are optimal but of course the NHS says they're in range so " normal". I had an ultra sound scan which was described as normal,no sign if malignancy so I'm going along with that.

The awful B12 deficiency symptoms. I now realise I've had the drawing away of energy feeling, followed by shaking, for some years. I thought it was due to doing too much when I'd not eaten enough. Thank goodness I had a private blood test and found this site. Realised I had far more symptoms ( numb toes & fingers , shortness of breath ( which dr ignored) dizziness, loss of balance and the awful fatigue) Found this site and am now self injecting with good results so far.

If you can, it might be worth you seeing a chiropractor who can check bones and muscles in your neck and back.

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Never thought of that thanks


Seen different doc today ,she says hard lump at the top of my spine is a fat deposit and stress related ,Dont think it is cos it hard and doesnt move also that doesnt explain like heat in middle of shoulder blades But may try chiropractor cos husband had one a few years ago result was pretty much instant with him.Never realised how ignorant doctors were about some illnesses Have got hold of some sub lingual b12 so going to start on this cos if started with 132 b12 when diagnosed After four loading doses six weeks later it was 555 then at 3 months it 338 Now have 3 months to go with one injection where will it be then


I think it might be worth you seeing a chiropractor. The one I saw was recommended by a friend and she identified exactly what was wrong, and "drew" lines along my head where the pain had been-- exactly where I'd described it to various drs. She was able to tell me that these lines of pain meant these muscles were clamping this nerve, the pain would have been along two different lines if other muscles were involved. She really knew her stuff and it cost me a couple of hundred pounds but was worth every penny.

Good luck. I hope you get to the root of your problems and then the only way is up!


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