Tomorrow I have my GP appointment, in response to the nerve conduction study showing I have nerve damage in my feet. This is in addition to my old friends, the continued burning and painful hands... and constant fatigue. I am hoping for some advice on how to play things...? 🙏🙏
I will be pressing for the full range of blood tests for Vitamin deficiencies, and PA or an immune response as the underlying cause. Although, I was a very long term user of strong dosage PPI's for over 3.5 years, and that could be causal as well.
Anyways, getting the diagnostics under way ..again...it's a key goal, and thanks to you good people I have the NICE docs printed and ready.
But I wanted to ask you all,whether my current nerve damage diagnosis and two year old, continuing symptoms are sufficient grounds to start B12 loading by injection now...?
If so, I believe it would be EOD...? Or at least every week...? And might need a slight folate top up too? I fear my GP will dither, stall things, and make me wait for all the test results...i.e. even longer to sustain more nerve damage ..? I appreciate that the wait be short i.e. 7 to 10 working days, but that feels like an age give my state of anxiety and fear.
Thanks for all and any help. Very glad to hear from you 🌻🌻
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Treesong2023
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Hi Nackapan, and thank you. Okay, yes I see that getting any B12 deficiency is a first step..and thanks for info on the loading regime. My previous b12 and iron tests were skewed / screwed because I initially thought ( correctly!?) I somehow had a wholesale vitamin deficiency and so I.. acted, and blitzed the vitamins before the blood tests. This was over a year ago. So, looking back, this might well be seen a re-run diagnostic due to me panicking and fearful at the time mid 2021, and using sublingual B12, iron, Vit B1 tablets etc..
In terms of my set of symptoms, it's the burning and numb feet and toes, and sole. Burning and painful fingers and palms, heels of hands literally ache, high pitched non-stop tinnitus, fatigue, ache in thigh and calf muscles, cramping toes and legs, electric shock feelings in finger tips. All much worse at night... Oh, ...and did I mention the ...
... IRRITABILITY!!! Which isn't me.
Not sure if this is grounds alone for immediate B12 injections?
Neurophysiologist just said ...yep! you have nerve damage, testing needed. Likely not diabetes, more likely vitamin deficiencies she said, and basically rushed me out. But to be fair there were loads of people waiting in the corridor.
Am I wise to ask for B12 there and then...? Therapeutic level..? Don't ask don't get...? 🌻
”Water soluble “ doesn’t mean that a vitamin can’t be overdosed and cause problems . It applies to Vitamin B12 , but certainly not to all water-soluble vitamins .
Hopefully, neurologist report to surgery confirmed suspected vitamin deficiency rather than diabetes as cause, as a nudge to GP regarding subsequent testing.
Nackapan has already supplied a list of tests to ask for.
I think it is very clear from posts here that many GPs ignore medical guidance regarding treatment of those with B12 deficiency and neurological symptoms, which is EOD B12 injections until no more improvement can be gained by doing so.
[ Please note: There are no medical guidelines that state " injections should be administered whenever nurses can fit you in and curtailed when nurses get nervous about "overdosing" -and decide to send you back to the GP". ]
Then one injection every 2 months as a maintenance dose. This is intended to maintain all your gains made during EOD treatment -so if you find it does not manage your symptoms well, it may help to keep a daily record of symptoms (frequency, severity) so if there is a pattern of symptom return in relation to administered injections, a more useful frequency can be negotiated. This is where medical guidance from lead bodies cannot help you.
An observant GP in a face-to-face appointment with a supportive partner in attendance - not so easy to get now, but both can help you if you do find you are struggling.
Plus I've found there is always help, information and kindness here !
CherylClaire. This place is full of helpful angels. Thank you kindly for the advice and thoughts above, and for the info on dosing up too. Once again, I am bowled over by how kind and supportive people are in here. I am preparing myself for the long struggle lots in here have had to try and get listened too, diagnosed, and given an effective treatment plan. I think I will take my partner in with me, as I am too soft sometimes, and he's more forthright. Thank you for that suggestion. Another good move for me! 🌻
It's also useful to have someone with you who can confirm the return of symptoms, or verify certain symptoms that are not believed by some GPs to be B12 related.
If some symptoms are visible but not permanent, a photo or video might help. Another job for a supportive partner - taking a video of you staggering around the supermarket, for example.
GP can also check the info in their BNF book Chapter 9 Section 1.2...they'll have a copy on their desk or bookcase.
I suggest you take a copy of relevant info with you just in case it's needed.
Have you tracked down the local B12 deficiency guidelines for your ICB or Health Board as these can sometimes differ from BNF/NICE CKS/BSH guidelines?
"I fear my GP will dither, stall things, and make me wait"
If they do dither you could pass on the PAS article about SACD, sub cute combined degeneration of the spinal cord and point out that delayed or inadequate treatment increases the risk of developing SACD.
That's just a fantastic stock of good help and information, and I feel i will be drawing on all of it. I am preparing my thoughts for a follow-up letter now! Thank you ever so much for your help, again!
My GP was not ready to give me the B12 based on my ( long term ) symptoms. He wants another round of tests. Which is only to be expected. On that aspects he was more active than I thought he would be, and was up for me getting a thyroid screen, b12 serum, folate, kidney eGFR ( due to long term PPI usage ) and MMA. The latter I had to make a push on to get. I brought up PA but he wasnt really listening. Anyways we shall see. Results in 4 days. Its so bizarre hoping to find i have...something! 😜 Sending kind regards and my sincere appreciation. K.
The appt was half as successful as I wanted as I did not get the B12 Active, or Active Iron tests ticked off as I was told the Labs don't provide those to our GPs. That could be due to there Testing Contract I dunno. I am waiting to see my results later this week.
I have a big background worry that my B12 will be in reference range and despite my longstanding symptoms, I wont get the B12 loading regime. 😟
But that's because I tend to over-think and over-worry. Luckily, I have some great advice on anxiety from Technoid for that.
"I have a big background worry that my B12 will be in reference range and despite my longstanding symptoms, I wont get the B12 loading regime"
Here's a couple more quotes that might be helpful to include in letter to GP.
From BMJ article on B12 deficiency published 2014
"If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features"
From summary of BSH Cobalamin and Folate guidelines
"In the presence of discordance between the test result and strong clinical features, treatment should not be delayed to avoid neurological impairment"
"Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood.
This can happen as the result of a problem known as functional vitamin B12 deficiency, where there's a problem with the proteins that help transport vitamin B12 between cells."
Hi Sleepybunny - that is just excellent material both to have to hand, and also to beef up my resolve! So, thank you for the links and the dual benefit!
I have now printed some of those articles / links. I am a Ready Teddy?
I am pleased to see from those links that the UK and Dutch clinicians are advocating the provision of B12 treatment in case of long term damage - rather than the dissappointment, dithering and denial responses that lots in here have had to deal with.
If you have symptoms that affect your concentration you would have good grounds to be allowed to. I suggest asking well in advance of an appointment in a letter.
Hi Sleepybunny, many thanks. 😀 Besides the constant fatigue and lassitude ( which isn't me ) my mind works are okay. I just tire very easily. But I appreciate your help. 🌻
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Re: high Folate levels & diminished returns from b12
started self injecting and just need some feedback please.
Wait between B12 diagnosis and loading doses?
