My daughter is continuing to receive EOD shots from her GP surgery by the grace of a switched on GP who I sent in the NICE guidelines to (for myself actually, but he seems to have taken it on board). The original GP who dealt with my daughter was happy to do loading doses but then wanted to give shots every three months.
I sent in a respectful letter to ask for EOD injections and it happened to land in the lap of this second, switched on GP.
I'm saying this to give people some hope and to strongly suggest taking the time (it took me days) to write a factual letter detailing symtpoms, how they impact your life, referring to NICE and any other helpful research/views found on this forum, things you have tried eg supplements, for how long, including private blood results but asking nicely if they are willing to consider these. (Even though I really always want to shove the private bloods in their face and shout look at this why aren't you treating me I'm obviously unwell and HERE is proof, your tests are rubbish not specific enough and you are obscenely ignorant. Sir/Madam. Feeling better now I wrote that😁).
So - on to bruising finally! My daughter has had unxplained bruising for ages, a year or two, but as she is quite clumsy and 'dappy' (B12??) she has put it down to that. I know it can be related to many things not just B12, but I wanted to ask did anyone have this prior to injections and how long did it continue?
Also, since she has started B12 EOD she has a couple of times had terrible cramping in her calves - she has always had tight calves but this is very interesting. She's wondering if it's a 'reversing out' thing? Has anyone experienced this?
She is going away to University at the end of this week and will have to change surgery and so we're going to have to do it all again. She may end up self-injecting but we'll see what gives in the new surgery.
Thank you to everyone who has helped my daughter by answering my questions. Her life would be so much worse without you. 🌺
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Sneedle
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Those are all good points you make and really helpful info about your and your daughter's symptoms.
We don't have access to the app as we're in Wales.
However at my request the GP has written a letter for her to take with her to the new surgery, detailing B12 treatment and rationale so far. I did explain that in her case she would need ongoing EOD to at least see how far she can get with symptom remission bit by bit, but he didn't seem convinced by it and has recommended a new regime of monthly. She has been better on energy front since injections started but it's very slow and nothing else has improved. Oh well...She knows she may need to self-inject. We will see how she goes now in the first month.
At least the letter is specific to B12 and highlights the need for it, for a new GP to be aware of. So she won't have to approach it right from the very start.
I'll look again at her ferritin - very interesting aboutyour daughter's calf issues.
I had years of bruises on my body when I couldn't remember hurting myself.
I also was very clumsy with many neuro symptoms so there were bruises from bumping into things.
I was scared to show the GP the bruises because it looked like someone was being violent with me....they weren't...be prepared for awkward questions.
So yes, unexpected bruises are a symptom.
I would expect her GP to investigate any unexpected bruising as it can sometimes be associated with other serious health conditions besides B12 deficiency.
Has she ever seen a haematologist?
Bruises might be mentioned in one of these symptoms lists
Symptoms of B12 Deficiency (folate deficiency also mentioned)
Has she got recent results for folate, ferritin (and other iron tests)and a full blood count. I've read that b12, folate and iron deficiencies can lead to thrombocytopenia (low platelet levels). Thrombocytopenia can be associated with bruising.
Interesting to search for "B12 deficiency cytopenia" if you have time. Research articles may have details that could be upsetting.
Ecchymosis
Ecchymosis is the scientific word for bruises so you might want to search for "B12 deficiency ecchymosis".
"She is going away to University at the end of this week and will have to change surgery "
I suggest you both have a look at the local B12 deficiency guidelines used by the ICB Integrated Care Board (England) or Health Board (Wales/Scotland) associated with the area the university is in before she goes.
If you can't find the local B12 deficiency guidelines for that area by an online search or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are being used in that area and for a link to or copy of them.
I'm not a health professional.
Other useful info in pinned post "Various PA/B12D resources.
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