Hi everyone. I was diagnosed with extremely low B12 last September (125 pg/mL) and have been having three monthly injections ever since. As a side note, I had low B12 in my twenties, although it was thought this was due to my diet (I was a veggie at the time.)
My issue is I am finding it really hard once the B12 wears off to manage. Today it has been a month since my last injection, and I feel exhausted already - after a full night's sleep and a fairly restful weekends! I suffer from heavy periods, which may impact on it (advice welcome on this).
I would also like to get tested for PA but my GP was reluctant to once I began treatment and I can't afford the private tests - the cheapest is around £200 I think. Does anyone have much experience in this? I should probably advocate for myself more, but as we all know, GPs don't seem to think PA is much of an issue. -sigh-
Thanks in advance, kind people! 😊
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One cause of B12 deficiency is pernicious anemia. A different type of B12 deficiency is functional B12 deficiency. There are no gold standard tests for B12 deficiency, which makes it a clinical diagnosis, based on what you tell the doctor and what the doctor can observe. If the doctor is unsure, the suggested procedure is a trial period (2 months) of B12 injections. When there are neurological symptoms (depression, psychosis, trouble thinking of words in discussions, balance anomalies, tingling in hands or feet, loss of sensation in hands or feet, and so forth), suggested schedule is injections every other day, or twice a week, or certainly no less frequent than once a week. The problem is that few doctors know the first thing about B12 deficiency or its treatment. Therefore, look for a post from Sleepybunny in which she suggests documents to print out to share with your doctor. One piece of printed material that I feel is most effective at helping physicians to increase their understanding of B12 deficiency symptoms, diagnosis, and treatment is an article written by physician/researchers for the purpose of informing physicians about B12 symptoms, diagnosis, and treatment, published in a peer-reviewed medical journal. The article is "The Many Faces of Cobalamin (Vitamin B12) Deficiency", published in the Mayo Clinic Proceedings (US). As a B12 deficiency patient myself (not medically trained), I feel the best thing a B12 deficiency patient can do to improve treatment received is to provide the patient's physician with a printed copy of this article. The article is freely available, in its entirety, on the internet.
ncbi.nlm.nih.gov/pmc/articl...
(Click "PDF" in the upper left corner to get the format best for printing.)
If you can't find your local guidelines online or on this forum then best bet is to submit a FOI (freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Read blog post below if you want to know why I suggest this.
Some UK forum members turn to treating themselves as a last resort if NHS treatment is not enough. Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 (which doesn't work for some) and some try self injection (SI).
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
My GP did an IF test after 3 months. I had 6 loaders and then 3 monthly so the test was carried out just before the first routine shot. 3 monthly was not enough, I negotiated 2 monthly and now self inject twice a week SC so I can get a better sense of how much I need. It is an experiment this year so I can learn how much and when I need treatment.
Did you have the loading doses, six over the first two weeks and then until.there was no further improvement ? If not you need to go back to your GP and demand to be treated as per the NICE guidelines. You may need more frequent injections than the 8 weekly the NHS provides, but self injecting is easy.
Hi, I had 8 loading injections over 4 weeks then 1 every 12 weeks. I didn’t know the NICE guidelines said different tbh, 8 weekly would probably sort me out!
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Try to find your local B12 deficiency guidelines.
I think people should be careful with their privacy as threads from this forum can appear on NHS website.
If you don't mind people knowing your ICB (Integrated Care Board) or Health Board then forum members might be able to help you find your local guidelines.
If you want to change this thread to a more private setting...
1) Go to original post, click More then click Edit
2) Scroll down post to Share, click Community Only then click Post.
If it's worked then you should see the word private in webpage address next time you log in and visit this thread.
After ruling everything else out for your symptoms I think your body is telling you you need a higher frequency of b12 injections. We all need different regimes.
My mum presenty has 8 weekly b1w prescribed 93yrs old
My daughter 10 weekly 31
I have settled on 2 weekly prescribed after a traumatic start with many neurological symptoms .
My starting point ( first ever b12 test ) 106 pg/ml
My daughters 82pg/ ml b12
Megobalastic anaemia
Low ferritin
Low vit D
So similar to yours as a margin with the lab test.
She still needs daily 400mcg folic acid.
Has an enormous amount of folate rich food.
Reduced the supplement in the past and her folate level plummets??
My mum has needed iron supplements for as long as I can remember .
Also bad gastric/ ibs symptoms.
Tried diary free . Prebiotic ect.
I'm don't eat copius amounts of greens . Do have them but far less than my daughter.
Folate always has been in range .
Low side to start (8) with but then went ovef range on 400mcg folic acid very quickly.. above 26 was stated on blood form.
So check
as suggested;
Iron panel
Ferritin
( especially with heavy blood loss through menstruation)
Vitamin D
Folate ( should've been done with b12)
Thyroid
FBC
As many things as the Gp will do.
Get a copy of your results.
Depending on your symptoms ask fir an appropriate referral.
The trouble is it's a lottery it seems who you see.
Sometimes referrals not accepted .
Criteria doest fit .
Early on a gp wouldn't refer ne to ENT as I did take the medication he prescribed for vertigo ax it wax fir sickness .
I hadn't been sick???
Took it / paid for it just incase .
Have now had a telephone consult with ENT .
Awful.
However had ear pressure tests and after more persuasion a referral to a physiotherapist for a vestibular disturbance.
So something did come out of thst awful telephone disinterested telephone consult.
Was referred early on to a neurologist .
It's a matter of wading on elimination and meanwhile finding what helps you.
Hope this not too wordy but wanted to give you real examples .
First of all, 'Heavy Periods' is a major issue. For every 1ml of red cells lost, that's 1mg of iron lost. The definition of 'normal' versus 'heavy' periods is complex, to say the least but I'll leave that one there, as that's another of the fields of my research! So you run the risk of iron deficiency anaemia. There are people out there who can help you on this subject, but at the very least it's worth keeping an eye on your FBC and Ferritin if nothing else.
Getting tested for PA? That's a tricky one, to say the least. There's no definitive test available, because the IFAb test will pick up around 50% of cases of PA [only around 50%] which means the others are an issue. Your B12 deficiency in the past [as a vegetarian] is not surprising, because w're not designed to be purely vegetarian, but that's another subject that I'll leave here.
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