I'm new to the forum and I have been reading for many years all of your questions and advice and felt I needed to get this out there in the hope I could get some opinions from fellow sufferers who are experiencing the same frustrations as myself. Sorry it's such a long post, I am tired of getting no answers and having to research everything myself.
In a nutshell, when I was first diagnosed with B12 deficiency I had never heard of it, although the nurse reassured me that i is all too common and is a deficiency occurs due to hectic lifestyles, not sure if this applies to a mum of two who works as a PA...but anyway. I asked whether there was an underlying issue that would have caused it - NO! I accepted this and took the loading doses they had to offer. I did start to see improvements in symptoms.
I would call the doctors about 4 weeks before my injections were due when they were scheduled every 3months, I would be flatly denied as they are not licenced to administer any sooner, only in exceptional cases.
Cut to 18 months later, I went through a series of tests after displaying new a new set of symptoms and was diagnosed with Crohn's (please refer to no underlying issue comment above) I later learned that these conditions are commonly found together. I have been medicated for Crohn's since and i have only ever had an initial flare of the disease. Since then, my B12 symptoms seem to be returning more quickly so I have asked about changing my injections to every two months. I was advised by 2 nurses at my GP surgery to contact my nurse at the hospital to enquire about changing these only to be told my GP is the one to make this decision, talk about passing the buck!
Cut to a conversation with my GP....
He firstly contradicts himself, by stating in response to my query about retesting my levels, by saying the tests are not conclusive and would be based on symptoms...however, for me to be considered an "exceptional case" he would need scientific evidence so I must have a test! That's fine i stated, however you have said that it won't help?!?!
When discussing my symptoms which i think need to be considered he throws in the fact that i have been diagnosed with anxiety so the symptoms may be due to that. I feel like i get anxious because of my symptoms. If you have neurological symptoms you can get injections every 2 months so i have found when researching, however my neurological symptoms are not caused by B12 deficiency according to the GP!?!?!
I have once been advised by my GP that the symptoms are "all in my head" (obviously due to my anxiety diagnosis).
I guess what I'm trying to determine is, are these symptoms I display actually happening to me (coincidentally weeks before i'm due my injection) or am I indeed a victim of my own anxiety!!??
If they had never discovered that my levels were low would i have been dosed up with more anti depressants instead??
I would rather they give me an inexpensive injection instead of a £10(ish) prescription.
My other question is, should i just buy the vials and inject myself to save myself from another frustrated conversation with my GP, which usually ends with me in tears adding to his case against me about my anxiety!!!
Please help!!!
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cherry-cola
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'Hectic lifestyle'! Idiotic comment from the nurse.
'Cannot give injections if you don't have neurological symptoms'. Idiot comment from the doctor who doesn't know that the guidelines in the BNF were changes 20 months ago. The BNF now says 'two to three months'.
'Anxiety isn't caused by a B12 deficiency'. Another idiotic comment be a doctor.
Yes, your symptoms could be caused by a B12 deficiency. I would try printing these out, reading them, folding them up until they are all sharp corners and giving them to your doctor where a proctologist will be required to remove them.
"Vitamin B-12 and other B vitamins play a role in producing brain chemicals that affect mood and other brain functions. Low levels of B-12 and other B vitamins such as vitamin B-6 and folate may be linked to depression."
This is my point that they would rather make me pay,reluctantly, for a prescription instead of an inexpensive jab. Because they say I have anxiety. So why do i still get symptoms after taking my expensive tablets!!?!?
I received my injection yesterday and any form of "anxiety" symptoms have depleted significantly.
Surely that's enough proof - but they need to base their decision on an "inconclusive scientific test".
All other points you made are nicely backed up in the articles too.
We shouldn't be made to feel like we're arguing with their decision though should we, it's wrong.
We know our own bodies but because they diagnosed anxiety it has to be in our heads. I think I am going to do the same and self inject because i don't think my rude words will remain silent if they keep telling me it's not real!!
They discovered the B12 deficiency, they made it real and they should take my symptoms seriously. They should help me sort it out right?!
I do feel i shall be forever going round in circles with it though...
Having read your post, it would seem strange to me if you weren't feeling anxious !
You have been told you have B12 deficiency and Crohn's. You feel the Crohn's is controlled well but not the B12 deficiency. Your GP will not "let" you have injections every 2 months, although your symptoms are telling you that is what you need and, as fbirder has said, the BNF guidelines were changed to "2-3 months" a good few years ago now.
[Probably because of so many many patients requiring more than the 3-month frequency, which was previously 2-month, anyway !]
Good that you are doing your own research; in the absence of your GP following well-established guidelines, a necessity.
Even a locum Haematologist who told me that B12 was "toxic, carcinogenic and highly addictive" reported back to my GP that she would advise against giving me more than one injection a month.... which would be an unusual suggestion, if either of the three alarmist statements she had made to me had any likelihood of being true.
Naturally, I asked for proof and received none, and these ridiculous allegations weren't repeated in her report to my GP.
I was also told by a second haematologist that my dizziness, air-hunger and breathlessness were all due to being an ex-smoker (!) She was the only person who has ever examined my fingernails, though, to give her some credit.
Insulted and deflated, at this point I felt that I had no options left but to self inject. I needed to get back to work and nothing was changing.
Yes, anxiety is or can be a symptom of B12 deficiency. I was offered antidepressants at least three times initially before my GP accepted that this was not a separate problem, but another symptom. It always felt like the down part of mood-swings to me.
It would be difficult to find a GP that can come up with a list of symptoms, though - usually, they will recognise "tiredness" and "numbness/tingling of hands/feet"- but of course, these also have many other possible causes which need to be ruled out first.
List all of your symptoms.* Date this and keep it safe.
Then try to reduce this list down to the most frequent, the most severe, the one/s that cause you most worry. Include the most visible symptoms if any ie ones that a GP can see getting better/worse when you visit/ ones that you can photograph for consultant, even if not present on the day. About 10 symptoms if you can.
Make a daily record chart, where you have each day's date along one side and symptoms list on the other. You can record simply by a dot in the box- or by giving a severity indication in the box (marks out of 10 for example). Mark in when you get your injection too.
Hopefully, a pattern will emerge and the recurrence of symptoms might suggest a frequency that will work better for you. Once on that, hopefully what then emerges is a reduction of symptoms in frequency and severity, with perhaps some of them disappearing, or at least giving you a break now and then !
You can then choose to show your GP or not, choose to show a consultant or not, depending on their attitude. Here's how I used to judge it: if they congratulated my GP for her thorough report: yes , but if they rolled their eyes and complained about the length of my GP's report: no.
* The long list ? Every now and then, if you revisit this, you will see how well you are doing by remembering what life was once like.
Sometimes I only remember certain symptoms because someone on here will post about one and ask if it's normal ! Early on, some things improved that I'd not realised were symptoms. Like you, I'd never even heard of B12.
We are all different, and so for some of us, this can take a while.
I honestly never thought I would get any replies to my post but I am glad I posted. When I am reading your replies I know my B12 and it's symptoms are real, however, when I talk to my GP they almost convince me it's not!!
It is an anxious and exhausting time!
In response to your suggestion of recording symptoms, I did think to myself the other day it's something i should have done from the very beginning. It never occurred to me at the beginning though, not when you believe you have a common, controlled vitamin deficiency.
I still record daily symptoms en route to a symptom-free day. I still believe in that as a goal , while accepting whatever limitations I have on the day.
I found it very useful at appointments when I was not always able to find my way through notes or research, no matter how much I highlighted sentences. I now find it useful to see when symptoms are starting to diminish. Have always been too symptomatic to see any patterns emerge, but this could now happen.
Of course no-one does it at the beginning, you are right.
I remember thinking:
"Okay: it's B12. A vitamin. Just 6 injections, then, and I'll be back to normal. " I think the nurse put me right on the 5th injection. ... For life ??? Started taking the whole thing a bit more seriously then !
For a realistic list of symptoms, you might want to see the Pernicious Anaemia Society website or b12 def.org. You might recognise some of them.
Since B12 is needed for every part of you, you might see differences in fingernails, hair, tongue etc. This is just the "obvious outside" - but useful indicators for a GP or consultant to see for themselves, without you having to get any kit off ! Useful for photo/ telephone consultations/ not using up too much of your 10-minute appointment.
Good luck. There is always someone around to talk to here. Helped me no end to know that.
Cherry you are not going mad, but I know exactly what you mean and as a health professional I despair at some people's ignorance. Before I was diagnosed I remember thinking I has MS or a brain tumor...not to mention anxiety ...yip, it's not easy getting the message over. Wishing you all the best x
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Update! Seen my GP again. B12 272 folate 8.8
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Neurologists & hematologists in London for B12 neurological symptoms - recs pls?
