Newbie

[SueBarr]

Hi Everyone

I’m new to the forum following advice from my counsellor. I also suffer with chronic depression and low mood and was told this could be made worse by the pernicious anaemia.

Has anyone else suffered from this?

Sue

[wedgewood]

If you do not receive B12 injections regularly enough , then you can be left with symptoms , and low mood and depression are definitely symptoms of P,A. Are you left with any other P.A. symptoms ? You could try asking your doctor for more regular injections , but may find that your doctor will not agree . You could then try self injection . I had to resort to this , and as a result my life has been much improved . Pernicious Anaemia is not well -understood by the medical profession, and not well researched , so we often have to self-help . Luckily B12 cannot be over-dosed , so there are no risks in doing this . The fact is that the one treatment protocol fits all is absolutely false . P.A. Patients all need different regularity of injections. Why, is is not understood . Maybe to do with how long they were B12 deficient before getting treatment or maybe genetic .? It is also advisable to take a modest daily folic acid tablet, as vitamin B9 works synergistically with B12 . Self injection is easy and cheap . And if lack of sufficient B12 injections is not the reason for your depression and low mood , you will not have done yourself any harm by self injection . ( which is more than can be said for some of the anti-depression medications ) That is important to know . . I know patients who need to inject anywhere between once a day , once every 3 months and any amount in between .

But definitely in the first instance , try to persuade you doctor to give you more regular injections . Best wishes .

[Akashrajput in reply to wedgewood]

Doctors really don't know how to deal with PA Having PA makes life miserable

[SueBarr in reply to wedgewood]

Thank you so much your advice really helps

[GalDriver in reply to SueBarr]

I was diagnosed with secondary progressive multiple sclerosis but the B12 deficiency seems to present the same problems. My brain fog has improved loads, mobility slightly and mood (crying every day) lifted somewhat. I know when I've missed an injection, my mood plummets. I self-inject alternate days. We all have different requirements. I've been vegetarian for decades so my B12 levels were badly depleted. I now make sure I include more in my diet now too (less easy if not a meat-eater).

[Sammyo23]

Hello.

I honestly haven't felt right ever since this whole thing started.

What makes my depression worse is that eating anything that contains salts, sugars, artificial flavors and natural flavors and other things causes more numbness, memory loss, and pain. I can't even drink carbonated water with nothing else added to it.

The biggest thing is the complete and utter apathy. It's separate from the depression. When I'm depressed, I still care about things. When I'm apathetic, I don't even believe in hope.

My emotions are significantly more muted than before and I'm incredibly quick to lose my temper and get mad. Anger is my close companion now, as it's one of the few things that I feel besides sadness and nothing.

My default state is feeling nothing at all.

Food used to be one of my favorite things in life and it suddenly became something that's made me miserable.

It was made significantly worse by the doctors I went to not knowing anything about my symptoms and it being months before I found b12. I live in the USA and don't have health insurance or much money. They were able to rule this out as being diabetes, at least.

Every day was more trial and error of what I can and cannot eat, with the slowly added anxiety of knowing that I'm potentially destroying my own body when I want to eat a sandwich. I'd agonize over the decision to eat something, eat it, then beat myself up over it as it turns out to hurt me.

The act of ordering from a restaurant or eating a side dish is torturous and I never feel it's worth it. It's even worse if the food isn't especially good, because then I wasted money on something bad that also hurt me.

I think of it as paying money to destroy my body.

But I do it sometimes anyways because I want something different.

I used to love eating sweets and drinking sodas, but I've had to cut my diet down to just meats and a small assortment of vegetables my body can tolerate without having a horrible reaction. So far it's just spinach, and even that leaves me numb for hours.

The only thing that's given me any hope is the idea that there's a cure for this. I don't particularly enjoy living anymore.

Something that did help with my mood is the discovery of St John's Wort, but taking it makes my genitals go numb, so I stopped.

I'm greatly concerned about long term nerve damage. I sometimes think that if my symptoms were just the numbness or just the memory loss, then it would be "okay." Not really fine, but something I can learn to live with.

But not only do I lose my encyclopedic knowledge of a variety of subjects and have to relearn things I used to know by heart, but my body is all screwed up too.

I just don't have any energy anymore. I sleep the day away. I don't look forward to anything.

It's a struggle sometimes to even do the injections. I get such bad anxiety and it hurts so much that it takes minutes to work myself up to doing it.

So I can certainly identify with the life ruining depression that comes with this condition. You're not alone.

[Hidden in reply to Sammyo23]

Good morning Sammy. You have to know that with the help of the forum members and self medicating with the right things that there is light at the end of the tunnel,many of us have came from the pits and like myself have achieved more good days than bad days.Yes I still get that odd day now after a year of self injecting where I struggle , it’s usually after a run of stress or illness that this happens to me like right now I’m in the middle of a house sale move that’s taken months to complete,still not there yet due to chain,and it’s killing my stress level right now so my solution to these times is to increase the shots to help me through this,I’m actually going to do another today and I hate doing them so use every trick in the book to make it as comfy as I can.Have you been checked for HPylori? I suffer from this on and off and it’s exactly as you describe with the food,stuff you’ve eaten for years and enjoyed suddenly seem toxic to your body and like you say eating out is out of the question so either get a stool test done via your gp or buy a self testing kit from amazon and check for HPylori it’s a nasty sneaky bacteria that will effect your whole well being and is successfully treated with triple therapy,it’s worth checking out.

Take care x

[Sammyo23 in reply to Hidden]

Thank you. I'll certainly look into this.

[Hidden in reply to Sammyo23]

Hi sammy, I can understand how you struggle with food, tiredness

Etc. Its all very frustrating, but once you get enough b12 into the body it will recover and things will gradually return to some sort of normality. Once normality returns just make sure you maintain b12 . It is very easy to slip back thinking your cured. (B12 is needed for life)

Sleep will help the body recover, keep going with injections, in time you will be OK.

Take Care

[Akashrajput in reply to Sammyo23]

U will get well soon ❤️

[Gambit62 Administrator]

I suffered decades of worsening depression - I still have episodes but it was much more manageable once I got my B12 levels correct for me - Some genetic variants that affect the way the body and in this particular instance the brain processes B12 are known to make people more susceptible to depression.

[Hidden in reply to Gambit62]

I totally agree there Gambit,even after I’d had ECT for post natal depression I still suffered for years.I now know that if they’d just treated my p.a which I’d suffered from childhood then I could have been saved from so many years of heartache and depression.I still get occasions where it hits me like a brick,stress is a trigger for me and most definately low b12 but as I say now if I can keep on top of these I have more good days than bad.

[Cherylclaire Forum Support]

I remember feeling like Sammyo23 does now. This was years ago though and I no longer feel like that.

Not desperate, angry, disheartened. Nor do I feel exhausted and in need of an afternoon nap or 15 hours' sleep a night. I can go to a supermarket without wearing myself out with all the sensory overload. I can walk without having to think about each step. I can understand what people are saying to me - although not so easy if there are competing noises (TV, other voices, music, traffic) or if too fast a flow or too deep a subject (Zoom meetings not that simple): some days are admittedly better than others. Mostly these days, I can find myself thinking "couldn't do this last year" or "wouldn't have said yes to that a few years back".

I do put some things off - but do not suffer from disproportionate anxiety about it now.

B12 does make a difference but it takes time and (sometimes) finding a suitable frequency, also having folate, ferritin, vitamin D and thyroid checked regularly. Not just for a number, but to find out whether levels are low (even where within range) or dropping. More important is: are they affecting your health and can that be improved with supplements ?

My vitamin D is on prescription because of osteoporosis of the spine was discovered. Ferritin and folate took a couple of years to get to a reasonable level and stabilise there. Although never out of range, low enough for hair to fall out and gums to bleed - and that's low enough for me !

Most importantly, I feel like me, have my own personality again -and notice if/when I don't.

Not perfect, but good.

[Sleepybunny]

Hi,

I'm sure you'll find help and support here.

I had many typical symptoms of B12 deficiency but remained untreated for years and deteriorated to the point of dementia symptoms, spinal and other neurological symptoms and mental health issues.

Make sure you are getting enough B12. To my mind that means enough to keep your symptoms at bay. I am still improving years after starting treatment.

It's possible that some links I include may have details that could be upsetting so you may want to read through the info with someone who is supportive.

B12 deficiency can have a huge impact on mental health.

b12deficiency.info/b12-and-...

Folate deficiency can also be associated with psychiatric symptoms.

"Neuropsychiatric symptoms of B12 deficiency: not just in the elderly and often without anaemia"

(English article from Dutch b12 website - reference ranges and units may vary from those used in UK)

stichtingb12tekort.nl/engli...

Link about "What to do next" if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

(mental health symptoms are mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above covers a variety of situations linked to B12 deficiency. Point 4 is about mental health.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion. Keep copies of any letters sent or received.

Have you considered joining PAS?

PAS can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS members can access a leaflet about PA and mental health from PAS website.

pernicious-anaemia-society....

There are many other useful leaflets/articles on PAS website.

B12 books I found useful

( all mention mental health symptoms)

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info needs updating in this book. See BNF link below.

BNF Hydroxycobalamin

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

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Copies of these books may be available from local library service.

How often are you getting B12 injections?

Some UK members on this forum find they need far more B12 than is recommended in guidelines below.

Vital to get adequate treatment. Untreated or under treated B12 deficiency can lead to an increased risk of permanent neurological damage.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Summary of above document

pernicious-anaemia-society....

BNF Hydroxycobalamin

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

See section on "neurological involvement" in above link if you have neuro symptoms.

NICE CKS

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

If you have the time and energy, worth trying to find out what the local guidelines are for treatment/diagnosis of B12 deficiency in your area of UK and compare them with NICE CKS/BNF and BSH links.

Each CCG/Health Board and NHS hospital trust will have their own local guidelines and sometimes these differ from NICE CKS/ BNF and BSH.

The worst problem I had in my many years of trying to find out why I was so ill was the ignorance of GPs and specialists about the symptoms, causes and effective treatment of B12 deficiency.

Be prepared for the chance that doctors and other health professionals may not be as educated about B12 deficiency as they should be so try to educate yourself when you feel up to it.

I am not medically trained.

I have written other detailed replies on other threads with lots of b12 info which may be worth searching for.

Thread below may have details that could be upsetting.

healthunlocked.com/pasoc/po...

There are some useful pinned posts on this forum.