Really Struggling : Hi Everyone :) I... - Pernicious Anaemi...

Pernicious Anaemia Society
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Really Struggling

Ellesbells12
Ellesbells12

Hi Everyone :)

I’m just looking for some help, guidance or to see if anyone is able to relate to the way I’m struggling at the moment.

I am 21 years of age, and was diagnosed with Vitamin B12 and Folate deficiency in January this year after having complaints of palpitations for a fair few years and that the sensation had become worse and I had started getting pins and needles in my hands and feet and just feel generally unwell most of the time.

For a long while they just put it down to anxiety, as I have suffered with bad anxiety and health anxiety in my life.

I had my first lot of injections in Feb this year, and was due to have my second lot in May but due to Covid-19 I was prescribed oral medication instead. However, where I have not been able to have another blood test to check my B12 levels due to Covid 19 they have not given me anything for my Folate levels as of yet.

My symptoms have never really seemed to get that much better, and I think suffering with health anxiety probably doesn’t help that anyway.

I find I get random bursts of sharp or burning pains all over my body - however these are mainly in my ribs, chest, upper back, shoulders and arms. Have been to my doctors in tears before fearing I am having a heart attack but ECGs always come back normal.

Recently I’ve been really struggling with shortness of breath and burning sensations in my stomach, chest and back.

My mental health is really bad, I feel panicked all of the time, I find myself sobbing and fearing my symptoms.

I’ve also had a few bad episodes of tinnitus.

I’ve found myself scared to sleep at night and constantly worried.

I think I’m driving my partner, friends and family slightly mad (hehe).

I know I will be able to get in to see my doctor soon, but just wondered if anyone else ever seems to really struggle?

Thanks so much for taking the time to read through this :)

44 Replies
oldestnewest

Sorry to hear how unwell you feel . You need your B12 injections . The tablets will not help you if you have Pernicious Anaemia. It’s really horrible what B12 deficiency can do to your health both mentally and physically . You should be able to get them reinstated now , according to new guidelines , as you are suffering with neurological symptoms . You can purchase folic acid tablets at larger supermarkets or at Amazon . ( 400 mcg is a good dosage , not too high. They are not expensive . ) Best send a letter to your surgery asking for re-instatement of your B12 injections , because of the new guidelines ( that will be put on file , and you should keep a copy. ) I went through a similar terrible time to you , but that was 5 years ago , and I’m much older than you . You have come to the right place here , and you will get good advice from other members who are more knowledgeable than me . Best wishes .

You need your B12 injections to be replaced , The tablets will not help you if you have Pernicious Anaemia, Write a letter to your surgery that you need your injections re-instated because of those neurological symptoms that you have . This is according to the latest guidelines ( you need the reference to those guidelines );It’s important for you to do this by letter then it will be put ion file . Keep a copy . I went through the total misery of what you describe several years ago . and failed to get the correct treatment because the medical profession has poor understanding of B12 deficiency .This was after a diagnosis of Pernicious Anaemia ( a positive Intrinsic Factor Antibody test ) I now treat myself by self -injecting B12 at a level that keeps the symptoms at bay . Many people on this forum have to do this .

You can purchase folic acid tablets in large supermarkets and from Amazon ( 400mcg is a good modest amount - ) They are cheap .

You will get better responses than mine . . so in the meantime I wish you all the best .

Thank you so much! I will write to them today.

You are having such a hard time Ellesbells, Wedgewood always gives such sound advice so I have not a lot to add but Palpitations, was a symptoms for me in the early days long before PA was considered by my GP. Pins and needles, breathlessness are common for many at times even once treatment starts to really work. It will take a while for your PA to get to a level that you say 'I've had a better day' ,there will always be good days and bad but it WILL get better in time. Anxiety is such a horrid symptom, and being 21, when life is changing all around you in addition to covid-19, it must be awful. What has really helped me lately, (as my anxiety returned too with awful dreams etc) is 'Mindfulness ', I don't know if you have heard or every done it before, I hadn't at 21. Anyway there is an app you can down load called 'calm', you can have a free 7 day trial (hope I am allowed to share that here). Also if you live in the U.K. there are free apps with the NHS which are worth exploring.....in addition to medication of course. I really wish you well x

Thank you so much! I actually started using calm a couple of weeks ago and it has really helped some nights when I haven’t been able to sleep! Thank you very much x

As you are a member of PAS , they will help you , if you fail to get help from your doctor . You will find the address and phone number on the PAS site .👍🍀

Thank you very much!

Look at fbirder’s reference in answer to Bobbles4 . after your posting . That’s the one you need . Just refer to the non-dietary B12 deficiency guide , and use that to your advantage. You could say that they have probably missed the new guide lines . Your neurological symptoms are returning , and you need injections -now ASAP .

Good luck to you. We are all supporting you here. I understand. At my worst, before diagnosis, I felt the world was ending and had such profound emotional pain (on top of all the physical problems) that it would sometimes drive me to sit outside on my kitchen step and howl like a wounded animal. Not crazy at all...

Emmers5
Emmers5 in reply to Emmers5

Oh, the point of that post was that now I am well. Hang in there it does take time.

Ellesbells12
Ellesbells12 in reply to Emmers5

Thank you so much! Being able to share with others that have had similar issues already makes me feel more understood and like I’m not doing mad hehe!

Hi,

I'm sorry to read that you're having a hard time.

Do you mind me asking what the GP thinks is causing your low B12 and low folate?

The cause may affect the treatment you are given.

Have you considered joining PAS (Pernicious Anaemia Society) if GP thinks you have PA?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

B12d.org has some online meetings during pandemic.

b12d.org/event

B12 Deficiency Info website has a lot of helpful info.

b12deficiency.info/

Link about writing letters to GP about B12 deficiency

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Pins and needles are usually considered to be a neurological symptom.

In UK, people with b12 deficiency with neurological symptoms should be on B12 injections every 2 months.

How many loading injections did you have at start of your treatment?

BNF

bnf.nice.org.uk/drug/hydrox...

BSH (British society of Haematology) has produced guidance for GPs to use during pandemic.

See next link to PAS news item about this. Check that your GP surgery is using the latest BSH guidance.

pernicious-anaemia-society....

Some of the links I post in threads have a lot of information in them which can be overwhelming and there may be some info that is upsetting for some people.

Let me know if you'd like me to post some more links.

There is a lot more B12 info I can pass on.

I'm not medically trained.

Thank you so much for this! My GP has advised PA! I will look into joining the society, thank you :)

Would you like me to post more info about PA and B12 deficiency?

Yes please! Thank you!

Hi again,

B12 deficiency from all causes, not just PA, can have a massive impact on mental health.

Links about B12 deficiency and Mental Health

martynhooper.com/2017/01/22...

b12deficiency.info/b12-and-...

As GP thinks it's PA, I recommend joining PAS.

PAS can provide support and info.

pernicious-anaemia-society....

Have you also been tested for Coeliac disease?

UK guidelines suggest anyone with unexplained b12, folate or iron deficiency should be tested.

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Here's some more links.

I suggest reading them with someone else if you're feeling anxious as it's possible there may be some details that are upsetting.

Impact of Pandemic

Lots of UK forum members are struggling to get B12 treatment at moment.

I left a long reply in this next thread with info on impact of pandemic on B12 treatment in UK.

healthunlocked.com/pasoc/po.....

It includes links to recent PAS news items and blog posts from B12 Deficiency Info which have suggestions on how to cope if injections stopped/delayed/swapped for oral tablets.

Warning

I believe that many UK patients who have been on B12 injections may find it difficult to get them reinstated even after pandemic is over.

There are moves afoot in some areas of UK eg Gloucestershire to move patients permanently to oral tablets.

Blog post about Treatment of B12 deficiency in Gloucestershire (April 2020)

b12deficiency.info/blog/202...

Challenging GPs

If you want to challenge GPs decision to use oral tablets, I suggest putting queries about treatment into a brief as possible, polite letter to GP.

Try to include extracts from UK guidelines etc that support your arguments. Should be useful info in the links to other threads I included in this post.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of b12 deficiency with neurological symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Your local MP or representative of devolved administration in Scotland, Wales, NI should be interested in your story if you are struggling to get appropriate treatment.

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, B12 books, B12 websites, UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

I am not medically trained.

Just want to say, best of luck, try to stay positive, having a diagnosis is a massive step forward! You will get there and you will always get help and support you need on here 😊

Ellesbells12
Ellesbells12 in reply to kmsbc

Thank you so much! I really appreciate it :)

Anxiety is a horrible thing and you are not alone. In fact in schools alone anxiety is quite prevalent from 13 years upwards. Your symptoms all seem b vitamin related nit just b12 so hopefully Gerri g your b12 injections ASAP will be a start. But a really good whole b multi maybe liposomal as more readily absorbed will help with anxiety. The other thing is during long bouts of anxiety our stress hormones badly disrupt all our vitamins and minerals. Magnesium being the most important. A really good magnesium like glycinate of l threonate is good for anxiety. Start low and slow never start with the full dose. Omega 3’s from arctic line caught cod are another one good for anxiety and you notice a difference quite quickly once you get all these on board. (Omega 3’s from line caught cod from Nordic naturals are mercury tested so you aren’t over burdening your body)! Also vitamin D is vital and for anxiety I would suggest 30 mins in the outdoors to get it as being outdoors is therapeutic in itself. Try reading up on grounding. You will get there if you take charge of your own health.

Ellesbells12
Ellesbells12 in reply to Parksy

Thank you very much! I’m going to pop out today and get some good vitamin supplements and just try and get my body feeling good again! :)

Think everyone has given you practical advice but just to say sorry you’re struggling, it will get better on the other side. I spent years feeling like I was going mad. I was so suicidal and had mood swings and had no idea what was going on until I got injections. Good luck xx

Thank you very much! Hoping with my next lot of injections I’ll start to feel the benefit more :) xx

Sorry to hear your having a bad time think alot of us are with the situation at the moment.Have you also had your thyroid checked? I know I got diagnosed with b12 deficiency along with hypothyroidism at the same time and had alot of your symptoms. As others have said it's very common to be deficient in other vitamins also so worth checking those. Hope you feel better soon

Thank you! I did have my thyroid tested at the time time and function came back normal....however various thyroid issues run in my family along with Graves’ disease. When my nan was younger she had issues with her thyroid and her blood tests kept coming back as normal range until they did the further tests with a specialist. So I have been thinking about that and may speak to my GP about pushing for more tests

Might be worth you posting any thyroid results on Thyroid UK forum on HU.

It's a very active supportive forum.

In UK, GPs often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests they can do.

Brilliant, I will do, thank you!

Definitely worth checking alot of these things seen to go hand in hand! Hope you feel better soon

Hi Ellesbells12, sorry to hear how rough you are feeling.

I was diagnosed with a B12 and folate deficiency in January with similar symptoms to yourself. I’m waiting for en endoscopy to try and find out why. My Intrinsic Factor test didn’t indicate PA, but I know from this site that it is very unreliable.

I was prescribed 5mg per day of folic acid (tablets) for four months.

Due to problems getting appointments for my loading B12 doses, I started the tablets about three days before the injections. Within those three days I had already had a massive change in that I was able to sleep well, right through the night. And also not needing to get up during the night to pee several times. I’m sleeping so much better.

The B12 shots are still taking time to make a huge difference, but the pins and needles/ tingling and numbness in my hands has decreased.

I would suggest speaking to your Dr again about folic acid tablets or at least taking a good supplement of this. I’ve also noticed taking vit D tablets really helps me.

Good luck. Hope you start to feel better soon!

Thank you so much! I will definitely push for some folic acid and I’ll buy some Vit D tablets today! Thank you again! :)

Just like me years back - vitamins and minerals must be at least mid range, D3 - never take without K2. Start slow and build up, don't give your old system, already under stress too much cope with at a time. Me - I got a full set -PA+hypo-hashi. There is light at the end of this tunnel you are in and you will get there. Your mental side of things could possibly be due to your PA - you will have had it long before you were diagnosed with a gradual build up of both physically and mental symptoms. All this will subside once you are on a proper regime and can join the human race again.

This forum will give you good advice and just as important support. It is like learning to walk again and all have been down that road. I used to forget I had even asked a question and as for reading answers and remembering, let alone understanding - forget it. I am old but you have youth on your side so just a little patience and life will be better again.

God bless you dear one.

Thank you very much!

Hello. Sorry you are suffering so much. It is a real worry, especially with this Covid19 ongoing. I agree with wedgewood's reply to you. You need your B12 injections if you have Pernicious Anaemia. Your symptoms sound typical of lack of B12, and tablets will not help. We are here for each other, so good luck . My surgery did the same and stopped my injections for a year. This Forum has been a God send, so many people to help. I did my first self injections a weeks ago, and am going to keep on doing those to stop the nasty symptoms. Take care. Briarhillcat

Thank you! I have written to my GP now to request injections so fingers crossed I can start with them again soon :) thanks again!

Good luck. If you are refused, then you might consider self injecting. A lot of us on here are doing that. You can get B12 solution from firms in Germany and needles etc from Medisave. If you do not get any help from your GP. Come back here and we will help you further. Briar hill cat.

Only to add. At the start I had dreadful anxiety. Was told at one point anxiety attack. It is a symptom of b12 deficiency as I'd never had it in that way before.

Stay strong and true to yourself.

That's one symptom I rarely get now.

Take care.

Loads to read on here.

Thanks very much! The anxiety is definitely the symptom I think I struggle with the most but I am getting there! I’ve felt much more upbeat the last few day’s! Speaking on here really helps :)

Hi Elles

I just found this site and read your post, and it’s a carbon copy of how I am feeling.

I am 51 years old with no underlying health issues. About a month ago I started getting a prickly heat and pins and needles feeling in my wrists and back of my hands. This would come and go and also affect my feet.

I went for a walk one day and fairly quickly became very light headed and out of breath. In my panic I called 999 and an ambulance was called. My heart rate and bp were slightly raised but they told me I was likely dehydrated. I booked a GP appointment, phone only, and she arranged a blood test. I was told all was ok but my B12 level slightly low at 110. I was told to take 50mcg tablets a day for 4 weeks and then book another test. Nothing has improved and I now wake in night with numb hands or fingers, which although goes away is very scary. I also occasionally feel light headed or easily stressed and the prickly feelings continue. I called the GP again explained the symptoms and that perhaps injections would be better, but am told my level is not that low and was given a physios number to see if I have a trapped nerve! I persevered and they did another test, my level was now 234 and I was PA negative. They said my level was now normal.

Anyway symptoms have got worse, some days I’m fine and others I feel like I’m dying.

I called my GP again and he appears disinterested and said they discussed my case in a practice meeting and decided I didn’t need injections. He did say that if I insist on injections then he will agree but against his recommendation,

I said I would consider my options (I hadn’t felt too bad for a couple of days) but then woke last night feeling breathless, panicky and burning sensation in my hands and almost drove to A&E in a panic!

I have emailed the Dr today insisting that I be started on injections immediately as under NICE guidelines and will call him Monday.

I am a meat and dairy eater but looking back can see small things over the years that fit the symptoms.

Anyway, I just wanted to say take care and I feel as scared as you. I was fit and healthy just weeks ago and had never heard of B12. Now I feel physically and mentally shattered and just want this to go away. This group has eased my mind a little seeing others stories, It would also be good to find people in this position to chat too when things are rough and scary.

Ellesbells12
Ellesbells12 in reply to DaveMK1

Hiya!

So sorry to hear you’re going through something similar :( it’s not easy at all!

Well done on insisting for injections!

A few days ago, I watched a video clip online where Holly and Phil on This Morning interviewed a lady who has low B12 and also a doctor, who advised guidelines for low B12 are different across the country (mad I know) didn’t really understand it, but in some places you could be classed as low, where as somewhere else may class you as high.

Well worth watching the video if you can find it! The lady really suffered similar things!

I hope you start feeling better soon and get on well with your first lot of injections!

Take care :)

I’ll reply in message babe x

do you have really bad acid coming up from your stomach ?

Do keep on top of this condition, it will creep up on you with other symptoms, and dont let the doctor put you off, some practices do 2 monthly cycles,(injections)others only do a 3 monthly cycle, which I'm stuck on,and I have ended up with more problems, tinnitus included now,which I mentioned to the doctor before it became permanent! You seem so young to start with this condition, it always seems a mystery to me how people end up with B12 problems, I suffered with ulcerative colitis when I was a teenager, and had a few attacks in my late twenties, and had few other stomach problems in later life,including having to take omeprazole for the rest of my life, which I believe can cause problems,and you have had all the classic symptoms I have had in the past, muscle spasms, eyes twitching, and the tongue tingling sensation and a few more, and the pins and needles are so common, but I suffer with neuropathy already so its trying to understand which one is giving me the problems already,its a lot for you to take on board, definitely don't smoke, and try not to drink to much alcohol as it affects the nerve endings,do keep to a healthy diet, and hopefully you'll manage to keep on top of this condition, good luck!

Hi Elles

I hope you are well. I just ended my loading doses and my GP currently won’t allow anymore even though I still have neuro symptoms. For the past few days I have had a burning sensation in my stomach and I see you had the same. Did you find anything that stopped the stomach burning?

Ellesbells12
Ellesbells12 in reply to DaveMK1

Hello! Sorry to hear that :( yes I did! I actually brought some over the counter medication called pepto-bismol! Bright pink stuff in a bottle and really settled my stomach! May not work for everyone but did the trick for me :) I found after a few days the burning seemed to fade anyway, but was unbearable to start with! Hope this helps and hope you feel better soon :)

Oh my word, you poor thing. You could be describing my own experience, apart from the anxiety. Thank heaven I have never had that to deal with as well.

For starters, you are not going mad, nor having a heart attack, or anything else like that. It sounds to me like Peripheral Neuropathy. That is one of the symptoms of B12 deficiency along with the Tinnitus. You are having Neurological symptoms and you should be getting your B12 jabs every 2 months (officially). I have heard of B12 oral meds, but I fail to see what good they do. If your body isn't absorbing B12, how can it process and absorb tablets? Another example of GP's ignorance.

You're young and have your whole life ahead of you, if I were you I would take control of this yourself now. You will never get support from your GP because they just don't understand how serious this deficiency is. Or rather, it's not the deficiency that is serious, but the health problems that can stem from the condition not being treated correctly.

Join the PAS: pernicious-anaemia-society....

Learn as much as you can and then do whatever you've got to do to keep yourself healthy!

Good Luck Sweetie, and do keep us all updated on how you're doing xx

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