B12 deficencey

[Natty91]

Hi, ive just recently been diagnosed with B12 deficencey. I get really tired in the mornings, its a real struggle to get out of bed but then when it gets to the evening i find it really hard to get to sleep!! I also get a dry mouth now and again and get digestive problems, ive had two stomach infections over the past few months. The worst thing for me is the anxiety! Its fine when i am at work or with people but when i am alone with my thoughts i get moments of panic and i really worry that im dying. Can anyone else relate to this? Also do you ever feel normal again? I just want to know there is light at the end of the tunnel. Thanks

[Nathan12345]

Hi, speaking as someone who has been where you are now I can assure you that you do get better. I've been in the exact same place as what you're in now despite the digestive problems and I half arsed my recovery but feel loads better. There are still some problems (probably because I've stopped taking b12 tablets and eating fortified foods) but I intend to pick back up on that!

One question though, are you having "memory" problems for example finding it hard to remember conversations and things you've done during the day?

Nathan

[Natty91 in reply to Nathan12345]

Hi Nathan,

Thanks for your reply, it's good to know people have felt the way i do and im not going crazy!

No i have no problems with my memory at all. Other than the usual things we all get randomly when you walk in a room and forget why you went in there haha!

How long does it take to feel better? Did you ever have moments of anxiety or worrying your are dying? Lol i feel so stupid writing that but its how i feel.

Thanks

[Nathan12345 in reply to Natty91]

Well apart from the other day my last post on this site was about 5 months ago so it is something that does take time. I know exactly what you mean when you say you feel like you're going crazy, I had a massive break up with my friend and ended my relationship (my gf at the time wasn't there for me anyway and made excuses not to see me) then i isolated myself which massively affected my social life whilst feeling like i could have a breakdown at any minute and be put in a mental asylum! The anxiety thing is different with me because i have had GAD in the past but it definately bought back the symptoms which I feel are still going on (which is why I'm jumping back on the B12 bandwagon)

I only asked about the memory because I can definately relate to that!

Nathan

[Natty91 in reply to Nathan12345]

Really aorry to hear this Nathan. That must have been a hard time for you. I am very lucky and have a great support network and an amazing boyfriend who is helping me through this which is so great to have. It's early days for me with regards to getting a diagnosis and i know its not something that will be cured over night but knowing things will eventually get better really helps you cope i think.

I am determined to get myself better so fingers crossed.

Thanks for your comments

[Nathan12345 in reply to Natty91]

I've had better moments haha but my friend was a manipulator so I'm glad it happened but not in the way it did but it's great you have a supporting boyfriend and a good network to help you through it you just gotta keep reminding yourself if you stick at the treatment, even if you don't think it's working or you relapse a bit that you'll get through it. I don't eat meat but what i find helps me is if i have a pint of milk or milkshake everyday alongside a bowl of cereal.

[Polaris in reply to Natty91]

You're definitely not going crazy Natty. The medical profession are way behind with research and it's causing widespread misery with more and more of us suffering anxiety, depression, etc. For me, severe anxiety came on after being prescribed v, high dose medications for high BP. Thankfully, anxiety and agrophobia is much improved now that I've weaned myself off them and other symptoms of B12 def. have also improved following a g/f diet,

My severely B12 def. vegetarian relative, misdiagnosed as ME for years and then undertreated, is now on antipsychotics but becoming much worse since psychiatrists and surgery are now refusing to believe it is PA/B12 def and have stopped injections.

This popped into my inbox yesterday - I'm not sure whether the link will work but I found it really interesting, as I've believed for some time that all our family Autoimmune problems are rooted in 'leaky gut'.

It is really important for you to receive adequate B12 treatment from the beginning and I hope you will start to feel better soon. Very best wishes.

chriskresser.com/functional...

[Aarony]

Hi Natty, I am quite new to this, so can't give you reassurance that things get better, at least not quickly. I can relate to most of what you are saying though. I was just wondering if you have other vitamins that are low, like vitamin D. I suspect that I have some sort of malabsorption problem and my vitamin D was down at 13 which is severe deficiency. What was your B12 level and what is your doc doing about it? If you look around the forum you will see some of the symptoms of low B12. Also, when you read the posts, you will find that you are not alone.

[Natty91 in reply to Aarony]

Hi Aarony,

My Dr. never actually told me what my levels were, i just got a letter through the door saying my levels were low and that i would need a course of injections, she never spoke about why i have it or what to expect or how long it takes to feel the effects! Bit rubbish Dr. now that i think about it!! I haven't been told any of my other vitamin levels are low.

[pvanderaa]

Please ask for a copy of all your blood test results and post the range as well as the value and there are people here who can help interpret them correctly.

You should be getting a series of loading injections and, if you have neurological symptoms, these injections should continue until you have no further improvements, then you will be put on a "maintenance" dose which a lot of people find insufficient as symptoms start to return before the next injection is due.

Once you are on injections, further blood tests should show high B12 which is what you want to repair nerve damage. If you have an absorption issue or PA, you need injections for life.

Some of your symptoms appear to be psychological side effects of neurological damage. The mind is trying to function on a damaged brain and is trying to make conclusions from the rewiring it is doing to try to stay whole.

Start a logbook of all your symptoms and try to assess a severity score for each. Try to pick out a marker symptom to grade the same time each day.

Treat the jab as day zero each cycle. You may notice new symptoms show up 3 to 48 hours after each injection. These are "good" symptoms but may appear to be similar to your existing "bad" symptoms.

The repair of myelin sheath damage is thought to be repairable but the progress is very slow. If the axon is damaged, then the nerve is gone and the damage is permanent.

The log book offers a way to self monitor but share a hard copy with your GP now and discuss the plan to self monitor and ask for the list and your scores to be included in your file.

[Natty91 in reply to pvanderaa]

Thanks, this was really great to read. I have no injections booked in now and have to wait 6 months before i am allowed a follow up blood test. Is this a normal amount of time to wait? I have been keeping notes since i was diagnosed of how i feel so we shall see if things get better.

Thanks for your help

[pvanderaa in reply to Natty91]

No. low is low. If the recycling and absorption process is working, you won't ever be low.

You need injections now to prevent further nerve damage. You don't want to get psychotic.

[Natty91 in reply to pvanderaa]

So should i be asking to have a follow up blood test sooner as they are not giving me any further injections?

[pvanderaa in reply to Natty91]

Yes get the follow up test before starting any supplements as these skew the results.

[Foggyme Administrator]

Hi Natty91. Hello and welcome. I'm really sorry that you had to find out about your B12 deficiency in such a way and sadly, it's not unusual for GP's to fail to communicate anything about B12 deficiency to their patients.

The good news (though you might not think so at the moment) is that you have been diagnosed (many GP's fail even at this basic level, with patients being left to struggle and fight to get treatment).

The main reason for is again, sadly, that most GP's are very ill-informed about B12 deficiency and penicious anaemia (one of the causes of B12 deficiency - but there are others).

B12 deficiency is quite a complex condition so perhaps it would be useful to share some 'starter' tips to get you going.

Because of GP lack of knowledge, most members here become their own experts so that they can help their GP's to help them, so..

You could begin by reading the PAS pinned posts (to the right of this page when you log on). The information there will give you an introduction to all things B12 deficient, including a symptom checklist, a diagnostic and treatment flowchart, current UK guidelines for treatment, and information about the safety of B12 injections (amongst other things). Don't worry if it looks complex to start with - it sinks in a bit at a time and you'll soon be surprised how much you know.

Now...the dying..yes, that's something we hear here often...B12 deficiency can make you feel like that and the key to recovery and full health is getting the right amount of B12 to make and keep you well. Unfortunately, not many GP's know much about the wide range of symptoms, or what the right treatment regimes are.

So first, print off the symptoms checklist in the second pinned post...check your symptoms against that list...you might be surprised to see that you have symptoms you didn't even know we're symptoms.

There are two regimes of treatment for B12 Deficieny. The first is for those who do not have neurological symptoms (6 x loading doses of B12 on alternate days then 1 injectionevery three months).

The second regime is for those who have neurological: this should be 6 x b12 loading doses on alternate days and then B12 injections every other day until no further improvement of symptoms, then injections every eight weeks (this is not enough for some people but that's another story). Most doctors are not aware of this regime but it's really important that you have this if you've got neurological symptoms (irreversible neurological damage can occur if this regime is not followed).

Some other useful things:

GP's will often tell you that your blood results are normal when they are not. what counts is where your results are in the reference range...being at the bottom of the range (or the top) is not good enough for some people, especially where B12 deficiency is concerned. If you get copies of your blood results, together with the reference ranges, and post them here, people here can help with interpretation.

Next - your GP should want to try and find out why your have the deficiency - possible reasons for deficiency can be found in the pinned posts - but the most common one is an absorption problem, sometimes (but not always) linked to pernicious anaemia.

If you have autoimmune disease in the family, the pernicious anaemia is the most likely cause. If,you suspect this, your GP should check anti-intrinsic factor antibodies - the test is not very accurate - if it tests positive, you definately have PA - if it tests negative, you can still have PA (only a 50% accuracy rate).

Also - B12 and folate work together so it is essential that you have good levels of folate (should be in the top third of the reference range): if you folate levels are low, then your body will not be able to use B12 properly.

People with B12 deficiency often have low levels of ferritin, which has symptoms similar to B12 Deficieny and can make you feel very ill indeed. So your GP should also check your ferritin levels (optimum level is 80-100).

Your GP should also have done a full blood count to check for macrocytic anaemia - large red blood cells - sometimes (but not always) present in pernicious anaemia (just flagging this up in case you suspect pernicious anaemia and your GP assumes you can't have it 'cause there's no anemia - wrong).

Having the right balance of vitamins and minerals is also important to B12 deficients, but that's something you can ask about later (just important to note that you should not take potassium supplements unless under medical supervision and too much B6 can cause neurological,problems).

And one last thing, for now (do 't want to over load you at this early stage)...please don't be surprised if you have to educate your doctor...and some doctors don't like this and get a bit touchy.

When you've the information in the pinned posts you'll probably have lots of questions so please post away. Lots of folks here to offer help and advice.

And if you do struggle with your GP or are not sure what should be done for you, then please ask about that as well.

And last but certainly not least..yes, you can get better and get the real you back....it's all rests on getting the right amount of B12 (you can't overdose or have too much in your blood - another GP misconception).

So take vary good care, keep posting as and when you need help, and let us know how you get on 😀

P.s. There are two very good books you can read about all things B12 deficient and pernicious anaemia - ask when you're ready and people will give the details (sorry, out of time 😖).

[Natty91 in reply to Foggyme]

Hi, you have no idea how helpful i have found this post.

I shall take some time out my day tomorrow and have a proper look through the website as you have suggested.

My Dr never told me my levels, should i go back and ask for a print out?

Also i have heard from a lot of people that GPs don't have a great knowledge of this which is quite concerning so i am sooo happy that i have found this support network. It has helped me already and i only posted a few hours ago!!

I am taking my mum to my next appointment to ask some questions about my results etc. So i shall show her your post.

Thank you so much - you have given me hope

[Foggyme Administrator in reply to Natty91]

Excellent news Natty 91...and a really good idea to take someone with you (doctors become much more attentive and helpful when a witness is present 😀).

The most crucial thing is to get on the right B12 regime...and it's okay to highlight anything in the pinned posts that relates to your case and share/show it to your GP. And if your GP tries to tell you not to read stuff off the internet, just tell him that NHS Choices direct people to the Health Unlocked forum (they even have a live feed on their website) and that the informations from the Pernicious Anaemia Society website 👍

Your GP should also have done a FBC (full blood count). B12 deficiency and / or low folate can give rise to something called macrocytic anaemia (also present in PA) - some GP's do not know that you can have PA without having macrocytic anaemia - especially if you are low in And yes...get a print out of all your blood results...it's your right to have copies and the receptionist will usually just print them for you.

We can see what you've had done, advise on interpretation, and maybe suggest other tests that may help clarify what's going on.

B12 Deficieny is quite trick...and sometime medic's more so...so just shout up if you need help or more information...folks here wonderfully good at all sorts of surprising stuff 😀

Good luck and enjoy the reading 😀

We can point you in the direction of more reading / websites if you want more information...

P.s. Not all GP experiences are bad...just the ones we tend to hear about when people are struggling to find answers...

[Natty91 in reply to Foggyme]

I am going to the doctors today to get my blood test results printed off and i will post on here later. I can't find the symptom checker or the pinned posts you were reffering to? Nothing comes up on the right hand side of the page when i log on......

[Foggyme Administrator in reply to Natty91]

Hi Natty91. If your logging on with a mobile phone then scroll down right to the bottom and you'll find the links 👍👍.

just in case you can't find them:

Pinned Post Links

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

👍

[Gambit62 Administrator]

I had about 40+ years of intermittent but increasing depression and anxiety and actually thought that my depression and anxiety couldn't be anything to do with B12 but it went when I managed to get the treatment I needed - though sadly this has meant managing my condition myself.

Just posting this link in the hope it may give you some ideas on how to deal with the anxiety - or at least a bit more understanding of how it is happening

healthunlocked.com/couchtob...

[Natty91 in reply to Gambit62]

Thanks for the link. I am so sorry to hear that you had to suffer for so long. Its such a horrible thing to go through and that must have been hard for you.

I really appreciate your support and comments - thank you

[Orbitolina]

Did you have your Vitamin D3 , thyroid and ferritin tested as well? There are a couple of problems that make you really tired. Things is: if you fight all day against falling asleep you might be so hyper and restless in the evening that you're not able to sleep. Kind of like a small child that fights against midday naps because everything is so interesting, and is then so tired and restless that it can't sleep in the evening.

I had this problem for years! It got extremely bad at the end of the winter, and I suppose it was partly related to my low D3 levels.

[Natty91 in reply to Orbitolina]

Hi - yeah i had 5 tubes taken which tested for lots of things but as i said they never showed me the results, just said my b12 was low

[Orbitolina in reply to Natty91]

Please do ask your gps receptionist for a printout and post the results here. People will give their opinion