Hi, feeling a bit muddled and stressed and need some guidance.
Basically it's only 2 and a half weeks since I finished loading doses but I feel no improvement, in fact I feel worse. The only thing that's better is I don't feel as wiped as I did during the loading doses. I have a GP appointment a week on Monday but that feels like an age away. I decided to leave it 4 weeks after the end of loading doses to speak to GP as I hoped for some slight improvement, and thought I might be taken more seriously if I left it that long than going in after 2 weeks.
The main things bothering me are 1) My feet and legs and 2) Shortness of breath. I've started getting stabbing pains in my toes which are getting worse, like needles under my nails, sometimes like my toes are being crushed. A little bit of numbness, icy cold feet, slight tingling but it's all pretty minor and doesn't last very long. My knees hurt too. However it's the toes that are really really getting to me. Will my GP accept that this is neuropathic pain I wonder? Does that count as a neurological symptom? I also get a little bit in my hands but it's not bad.
Anyway my partner ( a pessimist!) thinks I should just bite the bullet and start self injecting because he thinks there's not much chance of getting the treatment I need from the GP. I'm also worried that if I get referred on, I will have to wait weeks or months longer. Would it count against me if I start self injecting now? Cost is an issue in the longer term but on general principle I think the NHS should pay for my treatment.
So, erm, should I wait 10 more days, make an appointment sooner (no choice of GP, but we can do that) or bite the bullet? I really don't know what to do. Help? I am up to speed on what the guidelines say they should do and fully plan on telling the GP if necessary.
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Curlygal
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If you wander through old posts you will see many people have said they feel worse before they seem to feel improvement, the concensus is that it is the body actually doing some healing in the nerve ends.
If you can tolerate the sensations you are having then wait for your appt as you say then that way you can go back to your gp knowing you have given it a reasonable amount of time, and see how he plans to treat you. Keeping a symptom diary is how most people show they are or arent improving. Getting a physical copy of bloods done for yourself can show you where your levels are at too. The dr might say everything is ok but your folate might be quite low and the massive intake of b12 could have depleted it somewhat.
We all seem to react very differently when we start this, and lots of it seems to be due to how their gp treats them. Mine didnt want to know, so im at a point where i inject when i need to or use drops for a boost, and in some ways i have the reason behind why i was deficient as it turns out im a silent coeliac but now the blame for all my past and present symptoms are blamed on that and i cant find anything relating to coeliacs requiring a better regeme other than quarterly, despite me feeling so much better when i self inject.
B12 is an important element of bodily function and greatly needed by our body despite healthcare workers not necessarily realising this. If your dr doesnt plan to treat you as you need then you might need to consider si.
Hi Curlygal according to the N.I.C.E guidelines loading doses should "continue until there is no further improvement" in neurological symptoms which include those you mentioned above so one option would be to list them and go back to your doctor asking for the injections to continue.
Click on the link, then on "Scenario: Management" and scroll down.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with. I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
Hi, I've been exactly the same as you and so many neuro symptoms have gotten worse to the point GP decided to give me monthly injections instead of 3 monthly, then ended up in a&e however so they have referred me to a neurologist which I'm seeing Monday, it's a month since my loading doses and now I've just had my first monthly maintenance injection, will see what the neurologist says now.
But if you are really struggling go back, my memory and concentration has become worse and developed a tremor (which has calmed for now thankfully) as well as sleeping 80% of the time, muscles drained and burn after a short walk, pins and needles in hands and feet, numbness, dizzy, ringing in ears, and joints and muscles are so painful.
Like others have said I think it's your body healing, which I can see why with neuro symptoms it's necessary to continue loading doses until no further improvement as after only 5 it's seems worse n will probably take longer to heal, like it's given the body a taste of the b12 and suddenly taken it away which feels like two steps forward and 10 back, sorry if this is muddled.
thanks for all the responses. I think I will try to hang on a bit longer as the appointment I have is a half hour one which should give ample time to explain things. If I go in sooner I'll only get 10 minutes which would mean GP will be rushed.
My feet are really bad at night and I'm not sleeping well which makes me more stressed! Also my son is leaving home for university in 3 weeks time which is stressful obviously, he's my only child and on the autistic spectrum so it's worrying me a bit. I had hoped to spend more quality time with him before he goes but I'm feeling so rubbish. We were walking together a lot before but now I can barely manage a trip round the shops 🙁, it's not ideal.
I suppose what's attractive about self treatment is feeling more in control of things rather than letting the doctors dictate it, if that makes sense.
It sounds like the longer appointment is definitely useful.
I would go prepared with some things written down - it's easy to forget everything that you want to raise when in the actual moment.
It may be worth printing out the NICE document linked in a previous reply - just the fact that you are showing you have it and have read it might make it harder for him to dismiss your fears.
The guidance does suggest referral to a haematologist (a neurologist may be another option, although in my very limited experience a haematologist may be more suitable - unless there are other things at play causing the symptoms) - and the BSH guidelines are very thorough and detailed: onlinelibrary.wiley.com/doi... - including making it very clear that the "clinical features of deficiency" should be treated to avoid neurological impairment.
Clearly your symptoms have not improved, so it is reasonable for you to seek further advice and intervention and to expect at the least to be listened to. Once you know his view then it may be a matter of considering the next step.
How long is it until your next dose? Again with neurological symptoms it should be every 2 months, though it seems to be rare for a GP to read that part of the guidelines.
I'm going through a loading dose at the moment and really want to continue past the 6, but have a neurologist who doesn't consider my neurological symptoms are 'confirmed' as nerve conduction studies and MRI showed things were within standard limits, but as I understand it, the "neurological symptoms" mentioned in the guidelines are slightly more subjective - paraesthesia (pins and needles in fingers and feet), balance issues I think would all fall into that area, as well as possibly things like memory loss of 'foggy headedness'
A treatment diary showing the extent of the impact the symptoms are having on your life may well be useful evidence to support your case.
Hi there, sometimes you feel worse before you feel better, unfortunately.
If you are one of the lucky one's to have a decent GP, that's knows about PA /B12 deficiency treatment, not many of us do sadly.
I wouldn't wait, I'd start SI straight away to prevent further damage.
I wish I'd done the same, I waited 10 months after diagnosis before I started SI, I was fed up trying to get my GP to give me more frequent injections, 12 weekly injections are not enough.
And still after 10 months my B12 levels only went up till 311, they were 105!
Even though I believe that my B12 levels shouldn't have been checked but on saying that, in my opinion my B12 should've been a lot higher.
It's soul destroying asking the GP to give you more injections only to be told NO the damage is done! So you've just got to handle the neurological symptoms and all the other symptoms that you have.
You can ask for a print out of all your blood tests, make sure they have tested your folate, ferritin and Vitamin D, Vitamin D deficiency tends to like you when you are vitamin B12 deficient, and folate needs to be at a good level otherwise you won't get any benefit from the B12.
I hope you have a good GP and you won't need to battle like most of us
If the GP isn't up to scratch, then I'm with you're husband Self Inject, that's half the battle won already having a partner that's fully behind you, if you read on here and some other places, some people have a really difficult time in their own home.
Like you I have a daughter starting university 🎓
Just under 2 years ago I was bedridden, thanks to the amazing people on this site, I actually have a life now.
I wish you the best of luck and hope you feel better soon xo
Hello and thank you both for your very kind replies. I'll try and answer you both so sorry if this is a bit garbled!
Been feeling very tired last couple of days, I went out on Thursday and met up with two visiting uncles, had tea in a cafe and a short walk round the shopping centre then back home. Apparently this was too much as I got really dizzy when I got home and had hours of palpitations 🙁. I just switched to a hydroxocobalamin sublingual from methyl as I thought that might have been giving me headaches but today feel terribly tired.
I've been taking folic acid the last few weeks, mine was 6.8 when tested so I'll stay on that. I've been taking vitamin D for about 2 years so my levels should be ok. The doc didn't check ferritin but my haemoglobin was high normal so I presume my ferritin should be fine?
I plan on waiting another week, if I ordered some vials now they'd take a good few days to arrive anyway. Although I am considering ordering say 20 vials to keep in reserve as I am not expecting much success when I go to the GP! I will go in with some things written down. I sort of know roughly what I want to cover. I don't have the energy for a big battle though, I had enough of that dealing with the rare blood disorder I also have to last a lifetime! At least B12 deficiency is reasonably simple to fix, it's just a matter of the right quantity.
My son's impending departure is taking up a lot of my thoughts so just trying to keep it together and be supportive! Jacqueline how are you feeling about your daughter leaving home?
One more thing.... I agree about neurological symptoms, it's not really clear to me how physicians read this. The guidelines don't go into detail so it seems like doctors can interpret the phrase as they see fit, and I think this is a problem. Gavin your neurologist seems to be interpreting it in the narrowest possible sense. I'm not sure that many GPs would include memory issues or brain fog either?
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