Good Morning - I am hopeful that you might be able to give me some advice please.
Despite my last B12 Blood test having an active B12 result of 150 - I am continuing to have many symptoms of a B12 deficiency - including Severe Fatigue & Lethargy - Shortness of Breath, Palpitations, Fizzy Head - Brain Fog and lack of concentration - difficulty finding words - difficulty walking feeling drunk ? Parathesia and burning pains in feet with shooting pains - not swollen but it feels as if all my shoes are tight - feet, red/purple and feel as if they are full of iron filings ? Severe sleepiness and unable to wake in morning 9am ! - and fall asleep in front of the television in evening.
My GP decided to give me a B12 injection to see if this helped - and right away I woke easily at 7am and was able to watch television without falling asleep - this only lasted a few days but no other symptoms improved -
My question please - would I be in order to request further B12 injections to see if I might get more improvements ? or do you have any other suggestions please - I have now been unwell with these debilitating symptoms for over eighteen months - I have also been diagnosed with Hypothyroidisim another long journey and I am now on 100mcb Thyroxine - but with my last private Medichecks BT 10/1/23 this seems to be under control, which is why my GP is looking at B12 as a possible cause.
I am also awaiting a referral to a Haematologist as I have raised ferritin levels of 715 on last BT with a Transferrin Saturation level of 59% - I have had the Haoemachromatosis Gene test which has come back negative although I understand that there may be other tests that I could be given.
I hope that these details might help you to get a better picture of my complicated history and I would be grateful for any advice that you can offer please ?
Very many thanks Lemondrizz
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Lemondrizz1
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I can recognise all of those debilitating symptoms. I was given a loading dose of B12 then 3 monthly injections. I like your self were still suffering neurological symptoms, I approached my Dr for more frequent injections, she reluctantly agreed to 2 monthly. Still having symptoms and unable to function I decided to self inject.
I can sympathise with the foot pain ect. It is agony and felt at times like I had a woodpecker pecking my toes which would make me yell out in pain. It has improved with the injections but the stinging and burning remain. I also have hypoparathyroidism which was diagnosed many years ago. At present I am waiting to be seen by a gastrologist and have an endoscopy appointment in March to rule out the possibility of an absorbtion issue.
It will be interesting to see what your heamatologist suggests.
"My GP decided to give me a B12 injection to see if this helped - and right away I woke easily at 7am and was able to watch television without falling asleep - this only lasted a few days but no other symptoms improved -"
Have you asked your GP for a longer trial of B12 injections?
UK guidance on B12 deficiency suggests that people who are symptomatic for B12 deficiency, should be treated even if serum B12 is within range.
Blog post about being symptomatic for B12 deficiency with an in range serum (total) B12 result.
You mention that your Active B12 is 150 which I think is above range (can't see reference range). In a previous post you mentioned that you were using B12 drops or supplements, are you still doing this?
Has your doctor considered the possibility of Functional B12 Deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells. MMA and Homocysteine tests may be useful in helping to diagnose functional B12 deficiency.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed
If PA is a possibility, worth joining and talking to PAS who can offer support and pass on useful info. You do not need a confirmed PA diagnosis to join.
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.
Many thanks Sleepybunny - this is really useful information.
I hope you find some answers and a kind GP who listens.
I had a good conversation with my GP yesterday - he is the first GP that I have felt able to speak openly with as all others have just shut me down with the usual - Within NormalLimits ! I asked if I could have a loading dose of B12 injections with the possibility of continuing long term - and now have an appointment on 21/2 for the start of these.
I also asked if he thought it possible that I had Functional B12 Deficiency, - he said that he had not heard of it - but was prepared to consider this - ?? It certainly would tie in with the fact that I have good levels of B12 in my system but am feeling as if I have none with all the dibilitating symptoms. I found details of this on a NHS site and am hopeful that he will research this further. Sorry my mistake - my - Active B12 was 147 - at the top of the range level being 150.
Although continuing to feel really rubbish - am hopeful that I will get some effects from the loading doses to at least prove that we are going in the right direction.
Roll on Tuesday !!
Thank you so much as without your help and information, I would not have know about this Functional B12 Deficiency.
If I read your post correctly your doctor gave you one injection and expected you to get better with no further treatment. He/she doesn't know what they are doing. One injection will raise your B12 level and start you getting better but one is nowhere near enough. You need a loading dose ( at least 6 injections over 2 weeks ) and then maintenance injections for the rest of your life to stop you getting returning B12D symptoms.
The B12 injection was just to see if I might have any improvement at all - and this was to be followed by a follow up of further injections - because of the glimmer of improvements - and a further discussion, I now have appointments booked for a loading dose over the next two weeks with hopefully more B12 injections to continue as long as I need them.
Over the past 18 months this is the first GP, including consultants that has listened to me and was actually looking at my symptoms and prepared to think outside of the box - rather that just giving me the stock phrase - Within Normal Limits.
I am now hopeful that I might begin to have some improvements in my debilitating symptoms.
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