I was initially diagnosed with carpal tunnel syndrome about 18 months ago, due to numbness, pins and needles and burning sensations in my left arm / hand and left leg. I was given a cortisone injection from which I felt no benefit whatsoever from.
I explained the GP that along with the numbness, pain and strange sensations in my arm and leg I was also experiencing a number of other "nervous related" symptoms. The symptoms include extreme fatigue/tiredness, constipation sometimes and diarrhea at other times, bedwetting several times a week, blurred and double vision, profuse sweating after very moderate exertion (to the point where I look like I've just got out of the shower), general muscle aches, forgetfulness and clouded thinking (sometimes getting confused by things i normally understand easily), I also get out of breath just waking at a fairly slow pace and getting really badly breathless when I climb the stairs. I think that lists most of the symptoms. So the GP did lots of different blood tests. One thing that came out was that my B12 and folate levels were really low. So I was given oral supplements to take for a month and then was given another blood test. The level of B12 in my blood had actually decreased. So I was then given "loading"doses of IM B12 over two weeks. I didn't really notice any great improvements after the initial loading doses. I then had my levels re tested halfway between having the loading doses and the first regular 3 monthly injection. I was also tested for the intrinsic factor antibody at the same time. The B12 level was now within the normal range and the intrinsic factor test was negative. So the doctor then put me on 3 monthly injections for a year, which has just come to an end. I must admit I didn't really begin to notice any real improvement until the third maintenance jab, and the benefits seemed to wear off after about 6-8 weeks. I have mentioned by this to the GP and the fact that most of the nervous symptoms still remain. I was sent for a head MRI, the results came back from this and she said there were areas of my brain that had been starved of oxygen. I've just had another raft of blood tests, many the same as before and she has written to a neurologist and at the moment I am awaiting the outcome of this. I asked about the possibility of having more frequent B12 injections, but the doctor said that because the dose of B12 in the injections is so high I shouldn't need this. She then said going forward I might be able to just take oral supplements, but I don't understand this because when I initially took oral supplements for a month in the investigation phase, my B12 level actually decreased. Surely this indicates that B12 is not being absorbed through the gut and oral supplements are not effective in my case?
Anyway the last injection I had was about a week and a half ago and I am feeling some benefit now. I have got loads of housework and jobs in my garden done in the last week or so, before I completely lacked motivation and was sleeping up to 16 hour a day, and generally feeling unwell.
I'm worried that my GP will no longer let me have the B12 injections and and very worried about more nerve damage occurring on top of what has been done over the last 7-8 years. Basically I would be very grateful for some other opinions and advice on my situation, sorry I gave you war and peace but wanted to try and explain my situation for everyone to understand.
Many thanks for any help anyone can give me.
Cheers,
Owen
I'm a 43 year old male by the way, don't know if there's any other information that I need to give (obviously if someone says my bank details I might get a bit suspicious, hehe )
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You have a lot of neuro symptoms so I don't think you should ever have been taken off loading frequency until they resolved - it doesn't sound like you received correct treatment. Oral B12 (even high dose) doesn't work for many with PA although there are some ill-informed statements in the literature and in medical textbooks that insist it does, based on very flimsy evidence. Experts in B12 deficiency and treatment know that this is not the case but it takes a while for the knowledge to filter through to general practice.
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Welcome here. You are on the start of your journey. So, it is a case of finding out about PA/B12D from the informed organisations. It is worth joining the Pernicious Anaemia Society, it is an international charity.
Get copies of your blood results - so you know what you have had taken, got the results back and you can build and understand an individual portfolio which helps you and you are empowered.
I’m worried that my GP will no longer let me have the B12 injections. Wellthis community have a way around that. 😉 When we are treated appropriately, the outer covering of nerves (called myelin) can grow back. So, damage can be repaired. There is one particular book called Vitamin B12 in Clinical Practice : Doctor You Gave Me My Life Back by the late Dr Joseph Chandy. It has case studies in.
Do you know your ferritin (iron stores) and vitamin D levels too ? Good levels of those are needed. Is there any family history of PA/B12D or gut illnesses ?
No apology needed, I have recently started Tolstoy and I need your clothes, boots and motorcycle. *🤣
So yeah I'm in the UK, my folate levels are also low below normal range, I asked would I need to take folic acid but was told the B12 injections would sort that in out as well. My iron levels are also low but were just about within normal range last time. The blood tests I had on Friday are starting to trickle through on the NHS app, my Red blood cell distribut width is high, over normal range and was last time it was tested too, this is also an indicator of PA right?
There's a family history on PA my Mum's side, with my great grandma, and several cousins, uncles/aunties of my Mum's that had the condition.
I think like you say the GP seems to have fairly limited knowledge of the condition. She is consulting with a neurologist so hopefully she'll get some more sound advice and as you say hopefully I'll get a referral to see them at some point.
I think it's something that has been chipping away at me for years, like maybe as many as 10 as has been slowly getting worse. I just want to make sure I get treated properly asap as I really don't want some of the neuropathy type symptoms to get worse. One of my hobbies is playing the guitar and I've noticed I'm finding this more to difficult my left hand I think I'm playing as I always used to, but I'm missing the strings, frets etc. I know there's a lot worse that could happen to me but i really don't want to lose the ability to play completely, will have to stick to drums in that case. Less finesse required with bashing things!
I assume a neurologist would generally have a much better idea with regard to the condition and would likely suggest to have the injections more frequently if I say they are wearing off?
Have you considered self treating ? Many members here purchase on-line - myself included. I inject weekly...
Once supplementing B12 in any form then blood tests are of little value - as stated by the British Haematology Society. Blood tests may reveal B12 available to be transferred to the cells but not the amount in the cells where it is needed.
Taking a GOOD B Complex should keep all the B vits in balance. How are you treating the Low Iron ? VitD ?
Do you have on-line access to your results so you can monitor your progress ?
Your GP clearly doesn't know enough to help you properly, so I'm hoping you get a well-informed neurologist (although I haven't yet met one who knew any more - luckily I just found a better GP). B12 metabolism is strongly genetic although not yet fully understood. But the PA history makes some kind of metabolism issue much more likely (doesn't have to be PA though, or not yet). The fact that you are benefitting only from injections and have signs of oxygen deprivation surely should encourage them to use NICE - every other day injections until you stop improving. At the moment I'm getting one a week, but if it slips back further I shall start to self inject. A year only of 3 monthly is apalling. Best wishes
Your feeling better with a B12 shot means that you are definitely B12 deficient. You should not go by blood tests but take a shot whenever you feel the symptoms worsening. Currently, I would suggest a shot every couple of weeks or at least once a month till you fully recover. Best of luck!
aswell as continuing your b12 treatment, it is essential you address your low iron levels, you say they were just in range, but the ferritin ranges are way to wide to feel healthy, ideally you need your ferritin (iron stores) to be over 100ug for optimal health, and alot of your symptoms you describe can also be caused by low iron, so your symptoms could be caused by a mixture of things, and for your body to effectively use the b12 your injecting, it requires good iron levels, since everything works together, get an iron panel done and see if your doctor will start you on treatment, if they won’t….. then you can always self treat, but you need to be doing iron panels at least once a month since iron toxicity can make you poorly
Your story is very similar to mine and I'm a similar age to you too. I was also diagnosed with carpal tunnel syndrome about 18 months ago (but didn't get offered the hydrocortisone injection...and I don't agree this is the issue but that's another story!). My bloods in Jan-March this year showed low B12, folate and vit D with my iron being at the bottom of the scale. Negative intrinsic factor test.
I also had 6 loading doses and was then told it had "worked", even though the clinician was looking tests from before my first injection (again, another story). I didn't feel better, and in fact I started to feel dizzy and pins and needles got worse. I then joined this forum and PAS and started to see that a lot of people pay to see a specialist in Cambridge, so I did as I was desperate to get my life back and I knew that an oral B12 solution would not work for me as I kept a food diary and was having double the recommended B12 every day, so it was an absorption issue. My local surgery were really useless in helping me.
After seeing the specialist, I started every other day injections and supplements of iron, vit D and folic acid. I'm still on this plan after 1.5 months and some symptoms have mostly gone (breathlessness) and some have eased but are still there (tinnitus, fatigue). Most people on here have resorted to injecting at home. I battled my GP to get a prescription of injectable B12 but it was hard work. I definitely feel better than I did a few months ago but I feel there is still a long way to go to feel fully "normal" again. If I do too much in terms of gardening, exercise, socialising etc., I feel it over the following days so I am trying to slow down, but it's hard.
The fact that your brain has been starved of oxygen would prompt action you would think...but I think the general opinion on here is to take matters into your own hands and self inject!
Thanks, I'm guessing paying to see the specialist isn't cheap, so maybe self injection is the way to go? So people generally buy the hydroxocobalamin from online pharmacies in Germany is that correct? Any suggestions for where to obtain the hydroxocobalamin? I assume because it's not a controlled drug and you can possess it without a prescription then there is no problem with importing the vials? Then I guess I need syringe barrels, blunt needles to draw up the hydroxocobalamin and sharp needles to inject? Any idea where is best to get this equipment? What gauge needles do I need for injection? I assume you can't go too wrong with injecting? It's into muscle right? I guess keep everything clean and vary injection site from one injection to another?
I have managed to get my B12 on NHS prescription by complaining to an extreme level and by paying to see the specialist and then sharing his diagnosis and treatment with a GP that would listen. I've essentially proved the initial GP I saw, wrong about oral B12 being fine for me. I understand that most people buy from Germany. Please see @wedgewood's previous post here for advice on purchasing B12: healthunlocked.com/pasoc/po...
As for needles, syringes etc. I used the Medisave website. My specialist advised me to buy:
I was shown how to inject subcutaneously into my tummy but others on here inject into their thigh muscle. I tried that once but had a huge reaction that kept me awake for three nights, but I think that's just my reactive skin. There is some NHS advice here on how to inject unimed.co.uk/wp-content/upl... but if you know a nurse you can ask...that would be my advice.
I inject every other day at the moment and alternate from one side of my belly button to the other. I always get a red patch so it's easy to avoid a recent jab site. I am not medically trained, just passing on the information I've personally been given to try and help you!
Thanks for the information/advice. I think I should be ok with IM injection as I've not had a negative reaction to the injections I have had so far and haven't had a bad reaction to any other injections I've had in the past. I think I'll wait until the latest bloods are all back and see if the GP either feeds back any info from the neurologist, or if I hopefully get an appointment to actually see the neurologist. If nothing positive comes out of that then I think I will start with self injection. I'm keen not to leave it too long as I really don't want more damage to be done and I want to feel normal again asap. I want to be able to enjoy the things in life I used to enjoy and even just have the energy to get the boring things in life done like cleaning, DIY, etc etc. It seems that if I just take what my GP says as gospel I could end up in a much worse situation than I am in already. Anyway thanks again for the advice let's hope I can get this sorted soon and start enjoying life again.😊
Yep, I understand your sentiments exactly and that is why I chose to bite the bullet and pay to go private. My symptoms were worsening (including neurological) and all my GP was saying was to take a supplement. It's quite scary really. I'm sure you'll be fine either way with injecting, it's just a part of life for me now. Not being able to do basic tasks around the house and garden without being wiped out is so frustrating. You have the sympathies of all on here, I am sure! Good luck and keep us posted 👌
LIke many people here, you are not getting the needed support from your doctor. There is information here on how to self-inject. It would be good to continue with every other day until your symptoms subside. Then play around to find out how often you need an injection to keep the symptoms at bay.
If you go to the pinned posts there's a Nursing Times one about how to inject IM. Cambridge specialist is cheaper if you have an online consultation. In person he can prescribe B12 and show you how to self-inject.
Thanks, what are the contact details for the specialist? The blood tests I just had show my B12 level as being in normal range, but they were done a couple of days after the B12 injection which seems a bit pointless, however my Red blood cell distribut width is high above normal range, which from what I can gather is an indication of PA or other anemias. The doctor rang me yesterday and she said the hospital said to refer me to a neurovascular clinic, which I think means they're thinking the nervous symptoms I'm having are due to a stroke or something. I know you can have mini strokes without knowing and maybe this explains the areas of my brain starved of oxygen, but I don't know, hmmmm guess I'll wait for the appointment and see what they say.
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