At my wits end

[dunc01977]

I really need to get this off my chest after years of suffering in silence. It has got to the point where I can't cope with my illness anymore. I'm terrified of the doctors as I suffer from an acute anxiety disorder. I have had PA for years now but the symptoms just get worse, diahorrea, weakness, trembling, shortness of breath, muscle spasms, dizziness, insomnia, heavy legs, no concentration or memory, erratic heartbeat it's so frightening, can't face cameras being inserted into every orifice, surgery and such like but don't know where to turn for relief and On top of it all I have to work. HELP

[AmbersMom]

I am new here so I don't really have any advice but my heart goes out to you and I do understand how much a chronic illness wears away at one's soul. Hoping and praying that you experience some sort of relief very, very soon! Hoping that someone better educated than me can offer you some words of wisdom and sage advice.

[Nackapan]

Can you take some time off work as you so poorly. ?

Does the treatment need to change for your anxiety. ?

Does your b12 regime need looking at /changing

Have you someone you trust to help get the treatment you need?

I really hope something changes to give you the strength to try and make improvements.

[dunc01977 in reply to Nackapan]

I could take as much time off work as I want but it would mean being sacked. The problem is that I don't know where to start

[Nackapan in reply to dunc01977]

Start with what is your most dibilitating health symptom that makes everything else worse.

Try and break it down.

Otherwise too overwhelming.

Present no more than 3 things to your Gp at a time . Get a review of your treatment. Book a double appointment and take some you trust with you.

Did you try more b12 injections?

Was your h-pylori test negative?

Cbt exists for dealing with ongoing chronic health conditions. Some aimed more at mental health and some for management strategies like a pain clinic. Have you tried any of this over the years?

I realise it's very hard to know where to start.

Hope you find a way.

[Nackapan]

Does your work have an occupational health to help you? Perhaps flexible work hours ect. It depends on what sort of work you do I guess.

[dunc01977 in reply to Nackapan]

I'm a benefits advisor so as you can imagine I'm run off my feet these days, we don't have occupational health as we're only a small company.

[Cb1963]

I feel for you, I understand your concern, we have become an uncaring society, the pressure we are put under is just not worth it, I'm afraid to say that if your health is being dominated by your job it shows how the system is failing, I used to work mad hours on building sites and I'm physically burnt out, why should I put myself in an early grave, I have several reoccurring health issues and never seem to be away from the doctors, and non of these problems will be 'fixed', ultimately it's your LIFE that we are talking about, I'd rather have my health than 'wealth' (to which I have nether) but all your health problems can cause all different problems, and they themselves can keep adding up, I find the B12 problems one of the biggest issues, it's a very sly condition, and all the symptoms are very distressing,it's not just one problem, but numerous, I never thought a condition that is relatively easy to treat is not treated more seriously, and then its constant trips to the doctors asking for more injections, but my doctor is adamant that 3 monthly is enough, so I'm now getting more symptoms and I KNOW its B12 deficiency, it's an exhausting process, I'm probably having to self administer myself and get onto various websites to find a suitable supplier, sorry for the long post, but please try to keep on top of this, best wishes, and good luck.

[dana249]

I have never posted before but you have all the symptoms that i had and im afraid u have a nitwit dr like i did. I took b12 shots once a mo. For 2 yrs. It was high and dr stopped the shots and told me to take sublingual b12 daily. I got so weak i could barely make it accross the room. My husband took me to ER. My hemoglobin was at rock bottom. Iron was practicly non existent. I WAS DYING!! They gave me 4 pints of blood and 1 bag of iron. I felt better instantly and 3 mo later i feel beter than i have in a long long time. Make sure they are checking your iron.

[SunnyWorld in reply to dana249]

Omg!

[_Rose]

Hi dunc01977,

I'm sorry to hear about all of your suffering, I experience many of your symptoms myself.

As you are a Benefits advisor why not give yourself a break and start with a sick note from

your doctor and take it from there, it doesn't have to be long term but I suppose your job security depends on tenure and the law - you may be secure. I'm sure you are well aware of the process. I wish you all the best.

Rose

[lesbud1]

are you getting regular injections of B12? you have all the symptoms still and you certainly need more. your anxiety is b12d! you must go to the doctors with a list of your current symptoms. can you take someone with you for support, so not so scary? if you don't get help from the GP you need to ask for advice on here about getting injections from Germany and self injecting. your life will be so much better! you need to do this soon though as the longer you leave it some of the symptoms may not get sorted. I hope you start to feel so much better soon.

[Hanneke12]

It's SO HARD to trust doctors, I've felt (and still feel) paranoid every time I go see one. It feels like everything I say or do is recorded to be used against me in a court of law... Do you feel like that, too? However, since I realised that anxiety and paranoia are PART of the B12 deficiency, and since I'm back on injections twice a week, this trust issue is under control. I've told my doctor about it as well, and that I changed doctors because I was under-treated (my previous GP just wanted to send me to a rehab centre to learn to live with my 'psycho-somatic complaints'!). That felt scary to share, but it really helped.

Back to you: if you were diagnosed with PA, that's great, because then you can tell - or better: write a letter (PAS can help!) - to your doctor that you need to be regularly checked and if necessary treated for deficiencies in vitamin D, folic acid, and iron. And that you need to be treated for life with B12 injections, and that the frequency should be BASED ON YOUR SYMPTOMS. Hence, if your symptoms increase, your dosage is not enough.

From the diarrhoea I'd say that it's a good idea to look into your GI system as well and heal that. So: eat carefully (try simple things like mashed potatoes and steamed vegetables), take probiotics, don't aggravate your stomach - knowing that with PA you have LOW stomach acid, so having some lime juice with larger meals does wonders. Keep a diary to see what kinds of food lead to symptoms in the 48 hours after taking them.

Please know that if so many of us here have found it, then: there is a way out of this! Also for you.

Be well.

[Cherylclaire Forum Support]

I have never been diagnosed with PA, but have B12 deficiency/ functional B12 deficiency. I have consistently raised MMA. I have also had low folate and ferritin, and have vitamin D3 for osteoporosis of the spine now.

I have seen a lot of consultants over the past 3 1/2 years and had FODMAP diet, blood tests, stool and urine samples, breath test, u/s CT & MRI scans, physio, electric nerve test, cameras up and down.

I now self-inject every other day to stay as symptom-free as I can. On all frequencies of injection offered by the NHS, I got worse: 3-monthly I got worse straight away, 1-monthly took longer and I lasted 6 months before deteriorating on 2 a week (I so wanted that one to work !)

So here I am, awaiting my final appointment with an Inherited Metabolic Diseases consultant in a couple of weeks' time, in which my DNA story will be told to me after waiting a year and a half. And that will be an end to it. I've promised myself that.

This is all I know so far:

It's not Coeliac disease

It's not SIBO

It's not IBS (although 3 gastroenterologists think it is)

It's not imaginary

The gastroscopy (camera down) was the most useful, because it detected "a flattened mucosal pattern at d1 and d2 (duodenum)", and "patchy gastric metaplasia" was in the report. Coeliac disease was ruled out by biopsies. No cause was given though or treatment suggested.

Some of my symptoms have gone, some rarely return, some are less severe.

Certainly mood-swings and cognitive impairment are not so frequent or severe. Memory still a problem, but improving.

My next goal is to have an entirely symptom-free day, which hasn't happened yet.

My most persistent symptoms currently (this does change) are thumping heartbeat night and day which has significantly increased in frequency lately, and (sorry to have to tell you) daily diarrhoea has been a constant from day 1.

But that's just me and we are all different. Vive that !

My favourite consultant so far: an ENT specialist (I had salivary gland problems) who told me by looking at my tongue and throat that I clearly had B12 deficiency, that it was affected by saliva glands being compromised, and that I was doing absolutely the right thing by self-injecting every other day.

He advised me to continue and not get disheartened, that this would take a long time

… I have, I don't and it really, really is !

How you are managing to work, I'm not sure. I had 15 months off and had a phased return, now on 2 days per week. I suppose you do what you have to do.

Get some proper medical help and get back some quality of life. Important to get a supportive GP (one that will listen and notice, they don't have to be B12 deficiency experts). You will also find allies in the strangest quarters. Plus a massive amount of sound advice and kindness right here.

Whenever.

Are you a Pernicious Anaemia Society member ? This may be helpful, since you have a PA diagnosis, if you find it difficult to get more frequent injections from your practice to treat this condition properly.

[Gunj_redjem in reply to Cherylclaire]

For how much time have u been SI every other day?

[Cherylclaire Forum Support in reply to Gunj_redjem]

Since September 2017 - because a haematologist had reported to my GP that she could not recommend more frequent injections than one every 2 months. I'd been struggling on 1 a month at that point, and so I knew that I would deteriorate yet again. The decision at this point was made quite simple for me for that reason.

What she failed to put in her report was that she and her colleague had told me that B12 was carcinogenic, toxic, and highly addictive.

Which is just so clearly untrue:

Would a specialist ever allow a GP to consent to toxic injections ?

Or administer highly addictive substances ?

Or iInject a known carcinogen ?

Or not alert a GP to these dangers in the report ?

I had asked for proof in the form of research papers, several times. None were offered. This is because they don't exist.

[Gunj_redjem in reply to Cherylclaire]

It’s almost been 2yrs .. are your symptoms reversed?

[Cherylclaire Forum Support in reply to Gunj_redjem]

Reversal ? No.

Some symptoms have gone completely, some have become less frequent or less severe. Some stayed. Some are daily.

I'm not sure how much to expect; I'm not yet ready to say this is all I'll ever get back. Progress has been very gradual. If I hadn't recorded my symptoms daily in diaries, I would have forgotten that some have gone now because it was so slowly. (Or because I have a bad memory still )

I don't get exhausted , or hardly ever. I don't feel as if I have to think how to walk and force my legs to comply. I don't get mercurial mood-swings - but get frustrated, impatient and irritable still.

I have had to adapt:

I don't read because my memory and cognitive problems stop it being the joy it once was. I do read graphic novels because my pictorial memory and cognition aren't as bad. This is just one example.

I still sometimes find interaction so hard that I just need a day off from people now and then: walking along the river, taking photos, mudlarking etc. Nothing personal, just re-energising.

In the main, I am still gradually improving. It is always quite disheartening when I have a "blip", but I have to remind myself that these are fewer and farther between. I may always have to inject every other day. There's only one way to find out for sure and I'm not sufficiently improved yet to risk deterioration.

The only real research that talks about treatment for Functional B12 deficiency concludes by saying that injections should be frequent. [Talbot and Taylor]

I hope this hasn't dismayed you. I think Functional B12 deficiency is quite a rare condition. Most people feel improvements on far less injections. It took me 10 months before I even felt the injections at all : I was starting to believe that the nurses were pretending to inject the back of my arm: no feeling, worsening symptoms …… possibly including paranoia !

I certainly feel them now I do them - could be returning nerves, suspect I'm just a bit rubbish at this !

[Gunj_redjem in reply to Cherylclaire]

What’s ur level now?

[Cherylclaire Forum Support in reply to Gunj_redjem]

I hope it's >2000ng/L ! It should be.

Really I don't know because it is pointless measuring what amount of B12 is in my blood, so no-one ever does. Neither should they.

My GP agrees fortunately, and never adds it onto my folate, ferritin and thyroid checks- which really should be done regularly to check that folate and ferritin are at optimum levels (top 1/3 of range ideally) not over or dropping again, and that thyroid is not struggling too much.

My osteoporosis of the spine was being treated with Risedronate and D3 - and bone density improved within a year, but I decided to stop taking the Risedronate when I got severe jaw pain and loose teeth. The pain stopped, hopefully the improvement will continue. I have discussed this with a consultant who will monitor this, and has an alternative treatment to offer if I need it. We'll see.

I know that a lot of people on this forum who self-inject have been treated quite badly by their GPs, but I have never had cause to regret being honest with mine about decisions I have had to make in order to be able to work and live.

I was very frightened about what was happening to me and now I'm not.

[Shashapoo]

It sounds as if you have more than just B-12 issues going on. Magnesium helps with cramps, and also helps soothe nerves in your body to help you relax more. Green Tea several times a day may also help. I used to have severe panic disorder, but found that a lot of my problem was situational. After that was corrected, I did much better. It sounds like you have had a lot of testing done and all your levels of blood are normal? Meditation, exercise, would be beneficial. I also found that sugar is a Big inflammatory with me and stomach issues, so cut back your sugar intake and eat healthy. I am gluten intolerant and found this to benefit as well. I wish you luck in your problems, but just take one day at a time...be determined to get better. We have to be our own advocate, because many doctor's just seem unconcerned.

[Hidden]

This sounds terrible and I can relate to some of it. You definitely need to put your health first. xx

[dunc01977]

Many many thanks for all your informative replies, it's good to know I'm not alone. The worse symptoms by far are gasping for air, feeling like I'm going to pass out and not being able to eat what I want, I used to have a stomach of iron but luckily I've not lost too much weight. Not had a normal bowel movement for 8 years, sometimes it's worse than others luckily no blood in stools. I don't think I could ever face a camera up, I've had the one down, that wasn't too bad. I'll try the lime juice, already use Apple cider vinegar, that helps a bit, the digestive enzymes worked at first but stopped doing anything after a few years.