I finally went back to the GP after finishing loading doses nearly 5 weeks ago and not feeling any better. I've read all the stories in here about GPs not being very helpful, but still I feel a little amazed by my experience!
So I presented her with a list of my symptoms. To cut a long story short, apparently my dizziness, tiredness, shortness of breath, palpitations etc are all due to having anxiety and depression. Dizziness could also be because of dehydration, which apparently tall people are more likely to suffer from (?!) . My numb, cold, painful feet and toes are due to poor circulation.
I queried this, especially the shortness of breath and my numb/cold painful feet. I referred to the BNF guidelines regarding treating symptoms, not just going by the serum B12, but she told me my symptoms were not caused by the deficiency because I had had the loading doses. I asked about the enhanced treatment for neurological symptoms, was told they were not neurological but poor circulation and anxiety! She said they would only offer the extra injections if there were severe neurological symptoms such as you would expect with a serum B12 below 50 and I was nowhere near (mine was 154).
I am so glad I decided to self inject! OMG!
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Curlygal
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suspect that she's not going to come across any patients with a serum B12 of 50 - partly because I suspect its starting to get down to the point where the assay method becomes pretty inaccurate.
sorry you have had such a bad experience - hope the self-injection works for you though.
To be honest, I'm glad I wasn't expecting much. If I went in there hoping/expecting they would make me feel better I'd be pretty devastated. Of course that's what they SHOULD be doing, but never mind. If it wasn't for the internet and the ability it gives us to discuss our treatment I'd be lost. Unfortunately lots of patients are still suffering! That does make me angry.
I'm so sorry to hear of the lack of medical knowledge and understanding you have experienced, as so many of us have. It's almost criminal. Maybe negligance???
Well done for self-treating, as I am. {{{Hugs}}}
Your post has triggered my imagination, ha ha ha, and I have just posted here ...
Dear curlygal . What you report is exactly what happened to me more than 2 years ago ! I was told that my numb feet were ideopathic . Fullstop ! Other symptoms could be treated with anti-depressants ! As you say thank goodness for self injections . With them I managed to reduce the numbness in my feet to just burning sensation . Not pleasant , but better than numbness . When will PA patients get the correct treatment ? It must happen one day . Thank you Martyn for all you have done and continue to do for us
I agree Wedgewood if not for you I would have been scared to purchase the serum from abroad.As I say the fact that self injecting eases symptoms tells even us laypeople that their treatment is not adequate.
I hope that you improve your health . Hope also that you have got over that dreadful treatment you received from a doctor recently. I hope that you feel strong again now and will start self-injecting. Very best wishes !
Sons on his way to visit and give me assurance for first injection.I cant wait as my symptoms are horrible.I will be more confident once he tells me I,m doing it rightwards and upwards with no help from GP.
Sorry to hear about your difficult appt but sadly I'm not surprised based on my own experiences.
"She said they would only offer the extra injections if there were severe neurological symptoms such as you would expect with a serum B12 below 50 and I was nowhere near (mine was 154)."
I suspect your doctor has not read the BSH Cobalamin and Folate Guidelines. I gave my GPs a copy.....
Flowchart mentions tests and treatment for those with parathaesia as an example of a neuro symptom (tingling, pins and needles). I know from personal experience that parathaesia can occur at normal range levels eg 400ng.
Has your GP seen the BMJ B12 article and the UK NEQAs B12 Alert and maybe the article on SACD from PAS website (available to PAS members).
Some forum members write letters addressed to their GP. Letters to GPs are filed with medical records I believe. In past i have written letters containing my concerns, symptoms, quotes from B12 documents, relevant blood test results.
Writing letters to Gps about b12 deficiency (UK info).
One of the problems I have had is that as soon as they realise I am being treated for anxiety, a knowing look crosses their face and I am doomed! Suddenly ALL my physical symptoms are put down to that rather than any other cause. I had this problem when I was trying to get a diagnosis in the first place, from 18 months ago (and before that when I just felt a bit off).
Also the GP I saw is new, very young and presumably not long out of medical school. It was clear that they are being taught that loading shots cure the deficiency, and any lingering symptoms are therefore psychosomatic or at least unrelated to B12. They really are only interested in the blood results, not the actual experience of the patient. I fear that fighting it will lead to a greater assumption that I am a bit crazy, and more pitying looks.
Anyway, it's possible and even likely that some of my symptoms ARE due to anxiety! Just not the feet problems or the shortness of breath on climbing up a slope 😌. I struggle to see how anxiety could manufacture those symptoms.
My GP cannot cope with more than one symptom at a time so, loss of balance, palpitations, neuropathy in feet, breathing issues have all had to be looked at separately, even though I have suggested they might be linked. The neurologist she referred me to for balance problems said it was all my age -71!!!!!. He did not try the test for toppling over when you close your eyes. I do not feel that it is my age, but cannot face arguing any more.
That's how I feel, like I don't have the energy to argue. Worst thing was I have really been wondering if it's true; is it all in my mind? I did feel quite humiliated by the experience, in retrospect.
Hi Curlygal Ive just read your post and it's disgusting that so many people have been treated with this disdain by GP's.As you know I've suffered severe neurological symptoms and was seen by a neurologist for a year and a half.Even this will not convince them to treat me properly.Perhaps they know people will resort to self injection so easing the burden on their manpower.My B12 was 79 so pretty low but still no joy just abuse and humiliation for daring to question them.I'm glad self injection is helping you and the fact that it is helping proves you need more.Change must surely come soon.
Hi Curlygal, so sorry to hear ur GP responded in this way, I had a similar experience the other week when I had to see a different dr, he said I just needed to calm down and not be stressed, I told him I wasn't (was there after seeing neurologist, having tremors, memory loss, tingling etc) also blood pressure was very high, so neurologist put me on a beta blocker to help with tremor and blood pressure, neurologist said it's all to do with b12 deficiency and could take 6 months before I see improvement, my usual GP has put me on monthly injections and think that's as much as I'm gonna get, but this other GP tried blaming it all on anxiety and stress, I was so annoyed, wasn't until I told him what the neurologist said he checked my b12 level on the system and he said oh yes that's very low and said nothing more. I'm due another injection next week, and i can't wait lol, this month I have seen some improvements, less ringing in ears, have slept less during the day, palpatations have been less, and I even remembered a few things! Feeling shattered again now and like going upstairs is a marathon with legs burning. Hoping this month coming is even better. Did you self inject? How are you feeling now? x
Hi, yes I have been self injecting. I still feel quite nervous when I do it (am I doing it wrong? etc) but I do see some slow improvement. I definitely have a bit more energy. I can walk round the shops ok. I think my legs and feet are a little better, not as sore or numb/cold but it's still there. Hoping I will eventually feel normal! I still feel very up and down, if I overdo it I soon regret it! Currently injecting every 3 days.
I'm glad your neurologist is supportive, from what I have read here monthly injections are unusual. As for GPs....if only they realised that putting it all down to stress is guaranteed to raise your stress level through the roof! Hope you feel better after your next injection. Have you considered self injecting?
I haven't really considered it yet, as when I went to gp after loading doses with the NICE guidelines he said he couldn't do that but he could do me monthly injections, not sure how long that will last tho, my neurologist didn't prescribe anymore frequent just said I need life long injections, so hoping it stays at monthly. I can't imagine it must be nerve racking self injectioning, I may consider it if I don't see more improvements, I'm still shattered and most days foggy, but the odd day in the whole month I've had feeling like me a bit I am hopeful. Why do GPs just blame everything on anxiety and depression?! I had postnatal depression with my little girl two years ago, and instead of taking me off the meds they just upped them, even tho b12 deficiency can cause postnatal depression, so quick to assume sometimes. Hope your feeling better soon too. Take care xx
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