A couple of months ago now I received some very helpful advice from the forum and was able to get more loading shots than initially offered, and an 8 weekly B12 injection from the doctor.
Since then some things have improved - the tingling in my fingers has mostly stopped and the numbness seems much reduced.
However, I still seem to be struggling with other symptoms, so hoping someone might be able to give me the next direction.
The symptom I have been having the most problem with is the lethargy/'brain fog' and it seems to be getting worse if anything.
Three weeks ago I had a particularly bad week and was unable to work at all - but put that down to a possible dip between injections (though I was taking a daily 1000mg B12 tablet). However, I had my ongoing injection last Thursday and there seems to have been no improvement.
Currently, if I rest for a day or do very limited tasks, I seem to 'recharge' for a bit, but then when I work for 2-3 hours, I notice a gradual 'winding down' and a very noticeable slowing of cognitive functions, to the point where even simple tasks seem to become a challenge. That is then made worse by the anxiety that is caused I am sure, but there does seem to be a physical action at play too, rather than all pyschological.
Does this sound familiar to longer term sufferers? If so, would it be normal to expect this still so shortly after an injection, or should I be starting to look elsewhere for possible causes?
My doctor has tested just about everything I can think of in the last month and everything appears to come back normal, which is not in this case very helpful!
Tests that I've had within the last month, that were well within range (none even at the 'low' end from what I can see) - Full blood, Thyroid TSH, liver, Folate, Ferritin, Vit D, Prostate (blood), Stool sample. I've also had a clear head MRI (apart from 2 minor lesions that are apparently not relevant) and 'normal' SSEP results.
It's getting to the point where I'm not going to be able to continue to work as an electrician with the current symptoms, because I am likely to become a danger to myself or others (not to mention the mental toll of working through the symptoms)
I am seeing the doctor again next Tuesday, so any advice on where I might look next gratefully received...
Apologies for the long post!
Gavin
p.s. Original B12 result was 118, IF test was negative, currentl on 8 weekly B12
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GavinUK
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Hi GavinUK . So sorry to hear that you're still having problems.
If I recall, you had quite severe neurological symptoms that you'd had for some time.
So...your GP gave you a few more loading shots. Hmmm...
Given that the tests you list above are all okay...here's what I think...
You say that the numbness in your fingers has reduced and the tingling in your fingers has mostly stopped. And you still have brain fog.
Gavin, this means that you still have neurological symptoms and you should still be on alternate day injections...until there is no further improvement...and you still have improvements to be made (neurological repair often takes quite a while (up to two years) especially if you’ve been deficiency for some time - which you had).
Think I'd go back to your GP and re-visit the treatment guidelines for those with neurological symptoms...and ask to be put back on the 'every other day' regime of injections (where neurolgocal symptoms are concerned, it's not enough to simply have a few extra loading doses). Goodness only knows why GP's can't just follow the treatment guidelines.
The good news is that you have had some recovery...so more can be made. With more frequent B12 injections (i.e. the regime you should be on anyway).
Know I've left you links before but just in case, here's the links again (perhaps save you having to search for them). Pasted all the links in but highlighted the ones most useful for your current purpose:
onlinelibrary.wiley.com/doi...BritishStandards in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
Many here find that their GP's will not prescribe frequent enough injections for them to get and keep well. The right amount of B12 is the amount that makes and keeps you well.
Many here have GP's who undertreated their B12 deficiency (which I think is happening to you) and are left with no option but to self-inject with B12, to top-up the surgery rations. If this happens to you and you choose to go down that route, we can offer advice about where to source 'safe' supplies of B12 etc.
Good luck with your GP and post again if you need more help...and it'd be really good to hear how you get on.
The links are all very useful thank you - I do have most of them saved somewhere, but it is very useful to have them together in one post.
I did have neurological symptoms (mostly hand tingling initially, which led down the blind path of possible cubital tunnel treament). The tiredness, etc. was not something I had initially tied in with the same condition, though once B12 was found low the list of symptoms was a bit like a bingo card!
The issue seems to be that the neurologist didn't seem to consider my symptoms 'severe' - or support extended loading doses (and perhaps they are not compared to MS and other conditions that she experiences, but are certainly quite debilitating).
Although I had the tiredness for perhaps up to 2 years, looking back, the "brain fog" for me seems to have been a more recent development, and possibly worsened since treatment began, which is why I was wondering if my description sounded like the experience of others, or if it might be something unrelated.
As part of my initial to and fro with the doctor/neurologist I did have an email exchange with the person who wrote the guidelines that appear to be used locally, and he supported the extended alternate loading dose, but not for longer than 3 weeks or so. Unfortunately there seems to be a remarkable lack of clarity or knowledge in the UK guidelines about extended treatment in that way, at least from my experience?
I did investigate self treatment originally, but wanted to avoid it if possible, hence trying the daily 1000mcg dose. The B12 level at the recent test being over 1000 showed that at least something is getting into my blood, though I'm aware that may not be useful if it's not then getting where it needed.
Because of the limited time I will have with my GP I want to try to prepare for a focused set of issues, so I think perhaps requesting a further set of loading doses to see if there is any improvement will be on the list.
As so many on here seem to find, it can all be a bit overwhelming to have to try to 'guide' the doctor, rather than relying on them to automatically give you the right treatment!
Hi GavinUK It is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
I'm not a medically trained person but I've had P.A. for over 45 years and I've noticed over time that I've felt the need of more frequent injections and had to "fight" my "one size fits all" G.P. to get them.
Initially there was a muck up with the test as the lab told me it was a "bad sample", which turned out to be that they automatically rejected a retest within 90 days. By the time I had the retest I was slightly over the 90 days, so the result came back. In June it was 6.79 (3-20) and this time it had risen slightly to just under 9 I believe (don't have that printout immediately to hand sorry, but it had risen slightly rather than fallen).
Ferritin had not been tested originally but this time was again within range at 84.9 (24-337).
There was initial confusion because the tests were rejected (lab initially said bad sample, then it turned out it was because they automatically rejected a retest within 90 days for B12 and folate.
By the time I was then retested for B12/folate, I had been taking daily b12 tablets, so B12 was up at 1100 ish . I don't have the retest printout immediately to hand - my original folate was 6.79 mcg/L (3-20) in June - In the retest it had gone up a little - I think it was between 8 and 9.
The stool test was because of regular diarrhoea, so i'm not sure h pylori was included no - Actully from the the printout its unclear what the stool test checked for - it may have been for "serum C reactive protein level", which was normal at <5mg/L (<10)
If you have h pylori there is chronic inflamation due to an infection. In those cases, i have read, ferritin levels need to be above 100.
Just because the stores are there does not mean the body has access to them when inflamation is present.
I had h pylori, dectected with breath test, with zero stomach pain. Only issue was long term loose stools.
My b12 had risen with 9 injections to 814. I continued injections, additional 9 and still had General fatigue, not the crushing kind from a B12 deficiency, lack of motivation, brain fog, and blurry vision. I started taking iron three times daily and within five days begin to feel better.
Thank you for that link and information - it's something I will definitely raise with the doc, as the test seems to be a fairly simple one even if it only rules something else out - and it may well be worth looking at some iron supplements too - what sort of dosage did you take? Unlike B12, I believe too much iron can be an issue?
I take 325 mg ferrous sulfate 3X daily on an empty stomach. It has 65 mg of elemental iron per pill.
I have done this for 8 days and have not experienced constipation. I keep waiting for that to happen! Lol
I agree concerning too much iron being a problem. I am having lots of testing done this coming week. As my health is my priority and am not willing to risk anything.
All i can say is that i moved, painted and cleaned during this past week with an energy level i havent had in at least 2 years.
I have no wisdom to add, only want to say that I experience the same sort of dips in energy. I've been on injections for 6 years; my husband now does them for me, usually every 2 weeks, but more frequently if I start feeling low. I also take sublinguals as well as folic acid and iron. Just had an injection 5 days ago that didn't seem to help much at all; it was after 10 days of travel as well as stressful medical appointments...I seem to do more poorly if my routine is disrupted, even if the interruptions are not particularly stressful.
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