Is it all B12d??: Hi there I have been... - Pernicious Anaemi...

Pernicious Anaemia Society
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Is it all B12d??

Sasical
Sasical

Hi there

I have been reading through all the posts and I have noticed that when people are diagnosed with B12d they then put every symptom down to this, for example feeling tired, or tummy aches or whatever. Is it true that B12 causes everything? I mean people without B12 defficiency also feel tired, have tummy problems etc. Just trying to work out which symptoms of mine I should investigate further and which I put down to B12.

Thanks x

41 Replies
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I imagine anything that is not familiar to you. I fiind since being poorly I can separate aches I

used to have from new things going on

I think I b12 deficiency symptoms are very distinct and nothing v like I've had in my life before.

I actually like familiar aches or anything familiar

Oc course a cold of an infection are separate buf affect yoh more as your body under more stress and dealing with si much already

If you read for a bit longer, you would see people having it suggested they look at the possibility of other issues. A classic is that some thyroid issues overlap with B12 deficiency, another that folate deficiency has a lot in common with B12 deficiency - but there are many more.

However, if you start treating almost any disorder, and then feel better, it is natural to associate the relief of symptoms with the disorder. Further experience and thought might suggest otherwise, but it does seem likely as a first guess.

Thanks for your replies. It's just that I have some bowel problems that no doctors can come up with an explanation to, so I'm beginning to wonder if I can put them down to B12d. Also there are a lot of symptoms which I have been told are perimenopause (I'm 47) but now I'm thinking, could it be B12d? Even though I have noticed that a few people on B12 forums are women of approx peri age and they put their symptoms down to B12d but I ask myself, couldn't it be peri?

Sorry, really thinking out loud here AND rambling lol

JanD236
JanD236
in reply to Sasical

Exhaustion and bowel problems were B12d/PA symptoms for me. Tiredness, lack of vitality and hot flushes were menopause symptoms. So my symptoms were different (or different in degree in the case of exhaustion vs tiredness).

Cherylclaire
CherylclaireForum Support
in reply to JanD236

I agree- question of degree.

Being post-menopausal only means you initially blame getting older instead for all your problems.

I've never had to take a lot of notice of my body as I've been lucky enough to be fit and active ... until I wasn't. Small things I ignored I suppose, but by 56, I was clinging onto the bus-stop sign in the mornings on the way to work because I simply did not have the energy to stand up straight. How I got through my day and got home again, I cannot imagine and barely remember now.

I went to the GP five years ago with exhaustion, lower back and groin pain, daily diarrhoea - certainly not symptoms that I could either choose to ignore or put down to getting older/ post-menopause etc.

It got worse before better- but now I'm back to work, two days a week anyway, after being off sick for 15 months.

At 56, I'd never even heard of B12.

Sasical : I've found that a caring and observant GP has been crucial to recovery - far more important than trying to find one with expertise in this field. Although she wanted to put me on antidepressants a few times, I resisted because I believed that all of my mercurial moods (including low ones) had, at source, a physical cause.

Mostly, what I felt, when I felt anything, was scared. Scared that I wasn't coming back. This forum was, and is, invaluable.

Thank you very much. I know you're right, it just isn't very easy to find a good gp, I had a great one and she left. The options I have now are not great at all. But I really liked my neuro doc last week, at least he listened and looked at me, most these days hardly lift their eyea from the computer. He also said that some of my symptoms he had never come accross but that he would investigate, so that was nice, to feel his interest.

Cherylclaire
CherylclaireForum Support
in reply to Sasical

Can you not phone his personal secretary ? Or (perhaps an easier route) write directly to him ? I think that's worth a try, busy as they no doubt are. A reply might take a while, but might be invaluable information for you. If you ask a few specific questions, you are probably in with a chance of hearing back.

I went to see a Metabolics consultant last week, and told her that she was my final port of call after 5 years of consultants - and she suggested that I call or write if I have questions about the report etc !

She also suggested contacting the Pernicious Anaemia Society for support and knew who Martyn Hooper (founder of PAS) was. She even knew about the research he is involved in. She took her time with me.

That was a real breath of fresh air.

Cherylclaire That would be virtually impossible. This is at one of the major hospitals in Spain in Barcelona, it's massive and getting through is sooo difficult. But he's sent me for a test in Feb and then I have an appointment with him again in March. I'm used to waiting for everything. Also in March I have an appointment with a private neuro that I was recommended to see who has a waiting list of 8 months and that's paying!!

Can I ask what a metabolics consultant is?

Cherylclaire
CherylclaireForum Support
in reply to Sasical

Of course.

I had my DNA looked at by, to give them their full title, Adult Inherited Metabolic Diseases consultants. It took two years to get results, and now I have to wait for the written report to be sent to me and to my GP. When I get the full report I will need some help from this forum to decipher, although not much there to look at.

I cannot remember everything - quite complex - but she apologised for not being able to help me, recognising that I am ill but could not find anything that could explain why I still have B12 deficiency symptoms, why I need so many injections, why I have problems maintaining vitamin D, folate and ferritin, etc. The only two things that showed up in the tests were things that they had not seen before, so did not know what they meant. MMA although constantly raised, is not high and not accompanied by high homocysteine levels- so is being put down as possibly my "normal" level.

You try to put these impending appointments to the back of your mind, and try to be philosophical about results, but this feels like the end of a long line of enquiry which has revealed nothing that can help me. Deeply disappointing after all.

One last appointment with Oral Medicine consultant in February, who has been trying to grow cultures from mouth/ lip swabs taken (I have posted photos on here of tongue and angular cheilitis previously)- but these are just a couple of B12 deficiency-related symptoms as far as I can see, so doubt that this can supply any answers .

Do you know what test you are having in February ?

Let's hope you are getting nearer to an answer.

Cherylclaire in feb I'm having some form of nerve conduction test. Not an ordinary EMG because I have those every 6 months for my neuropathy. It's similar but connected with electrodes to some nerves in the head. I don't know if I explained it very well (sounds like Clockwork Orange lol) but that is more or less what he explained it was.

Cherylclaire
CherylclaireForum Support
in reply to Sasical

Well that sounds fascinating- let me know how it goes.

I put too much down to the menopause .

I missed b12 deficiency as did the medics No b12 was included on my blood. 2 missed opportunities as was having talks and si weary. I pushed through until I collapsed. A first. Then virtigo.

Dont assume peri or menopausal stages ate the full story. K truly believe it caused less stomach acidity and that I simply could not keep up the pace of energy anx stess levels. My body could cope with less

So be kind to yourself. Get tested whatever tih think necessary.

I had constipation that i was told was the menopause headaches forgetfulness feeling down lack of energy. Falling over. Trouble with my prescription glasses. Poor concentration.

Guess what ALL symptoms of b12 deficiency.

If only I was able to think closely back thdn and ask for a b12 blood test. Why oh why arnt yoh give one at the 50 + health screen

I attended. Started to eat less red meat!! More roughage as cholesterol a

bit high

Worst move for declining b12

I'm 58 now and feel I've already missed s year .

So dont put things down to the peri or menopause. Listen to your body.

I still csnt believe I missed all the signs but I was under an awful lot of stress looking after others. I did well to get to the 50+ check. What a waste of time if you are not screened properly.

I ironically health screened children as my last job in the NHS.

But was let down on mine!!

Rrrvr
Rrrvr
in reply to Nackapan

You’re right my doctor said my hair loss was part of pre-menopause nope it is B 12 deficiency

Start a logbook of all your symptoms so you can isolate each one. The ones the disappear and reappear in sync with your injections are probably from the deficiency. Several new one also appear from the repair of any nerve damage and tend to follow the injection for three days. The severity of these may indicate how deficient you became before the injection. These are pain, hunger, anxiety, loose bowels.

New symptoms from gluten and/or dairy intolerance may develop after you start injection. The casein protein in dairy is very similar to gluten. I had new issues with soya products as well. These symptoms show up after eating an offending food or drink and can last 4-6 days as the food moves through the gut. With symptoms, including brain fog, appearing along the way.

The logbook also supports any short term memory loss which can cone and go. So the better you keep a logbook, the more evidence you will provide to your GP when you ask for more frequent injections. Your GP will treat you like a total hypochondriac so be ready for that and will try to diagnose anxiety disorder and prescribe anti-depressants. Don’t go there as get cause additional side effects symptoms as well.

Are you taking folic acid and a daily multivitamin to support metabolism and work off the homocysteine and MMA build up from the B12D.

A B12 deficiency can produce many psychological symptoms, the main one of which is depression.

Being depressed can have many different physical effects on the body, which will be alleviated if the depression is treated.

Nackapan
Nackapan
in reply to fbirder

Oh yes

if you've got depression it should be treated and people do well on antidepressants

.

I personally have trialled a few things .

I do think an awful lot of people are put on them too quickly . Anyone can come across depressed if they in pain or ill in a short consultation.

Raising serotonin levels can be useful but can also be damaging if you physically cant do things your' brighter mind 'is saying you can.

I ended up with a 6 day migraine as a result. (Seritonin raised with hrt as a trial my Gp convinced woujd help me as I didnt feel i needed antidepressants )

Tricky . Diagnosing depression or being open minded about it.

I've many friends who will do well on them and theh have changed their life.

I know many have felt dismissed and unlistened to or fobbed off who really do not need them. I being one of the latter .....so far (being open minded) The Gp now sees this and admits she misjudged .

helvella
helvella
in reply to Nackapan

if you've got depression it should be treated and people do well on antidepressants

Some people seem to do very well on some anti-depressants. However, if there is an organic cause, addressing that seems to me to be the appropriate treatment.

One further issue, on top of what fbirder said, there is quite a lot of discussion about treatment-resistant depression. Where the standard approaches have not worked. Several things other than anti-depressants have helped - one often mentioned is the thyroid hormone replacement liothyronine (also called T3). Evidence suggests that if inadequate T3 is a part of someone's issue, no amount of other treatment will resolve the depression. However, sometimes liothyronine appears to help even when there is no accepted evidence of inadequate T3.

Sasical
Sasical
in reply to fbirder

I don't think I have depression although I do sometimes feel sad because I can't do everything I would want but what I most definitely do have is anxiety, lots of it.

I will list my symptoms see if they might be B12d:

-anxiety (a lot)

-difficulty walking (a lot)

-stiffness (sometimes)

-bowel problems (always, sweating, shaking, tachy and anxiety before a bm)

-shortness of breath (somethimes)

pvanderaa
pvanderaa
in reply to Sasical

I would say that they are all pretty consistent with a B12D. I get brain fog as well before BM.

Have to tried going gluten and dairy free to sort out the intestinal symptoms.

Once you start noticing symptoms, you will seem to find more and more. You may even think that you are becoming a hypochondriac. Just keep logging them and assessing their severity. Eventually you will find the consistent symptoms that you can use as a marker to monitor your progress.

Anxiety is one of the psychological symptoms from both Nerve damage and nerve repair. Treat it just like any other symptom, if you can step back and assess yourself. It’s hard to do.

You may feel more anxious after your B12 injections, as was my case, as the nerves of the brain get repaired, the mind goes into overdrive trying to sort stuff out.

Sleeplessness and wild dream were one of mine. I found that taking a Methyl sublingual at bedtime allowed clearer thoughts and the dreams seemed to resolve faster. I got better sleep.

The stress from the worry and anxiety seems to make matters worse in that the B12 doesn’t last as long between injections. I was asking for more frequent injections when my GP diagnosed anxiety and wanted to put me on an antidepressant. I got all the side effects and still had the anxiety. He them tried a different antidepressant with different side effects and it didn’t work either. After a month he finally increased my B12 and stopped the antidepressants. My anxiety improved immediately but I was left with several of the side effects from the anti depressants, tinnitus being one of then.

My anxiety still fluctuates but it’s different now that I self inject it is almost completely gone.

The logbook is a tool that helps give you back some control which eliminates a lot of stress.

A lot of symptoms are down to a b12 deficiency, but also some can occur regardless. I guess treat with B12 if symptoms still persist then you can focus on those in isolation if still concerned.

I had all the symptoms you list, and more, and they all resolved with B12 injections. It took time, a year of injections, before I regained anything like normality. I wish you the best on your journey to healing.

Sasical
Sasical
in reply to jarlethblue

Ooh thank you! That certainly gives me hope. Would you say your symptoms resolved gradually? And you also had bowel problems which improved?

I know we are all different but it gives me strength to continue

Nackapan
Nackapan
in reply to Sasical

I had bad anxiety at the start. New to me. It went. I do not get constipated now. Even on iron!! I have always had quite s high roughage diet. I lov

e beetroot veg dried fruit ect.

Initially I had some diarrhoea when I started b12 injections. As I have had /have a vestibular disturbance that can also affect youf bowels. I e xpect when anxiety calms so will your bowels!!take care

Sasical
Sasical
in reply to Nackapan

Thank you!!!

Hi there

You may wish to look at Coeliacs - see this site for more info: coeliac.org.uk/information-...

best wishes

Yes I had stomachaches for quite a bit like flu like symptoms start to get The shot almost a year ago and so much better

I was the opposite.

I put at least 60% of my symptoms down to issues other than b12, some even after loading shots.

I would have bet money they were not b12.

But almost on a weekly basis I realize that something or another was probably a b12 symptom that I hadn't even noted (or vitamin d deficiency, have both)

Last week it was weirdly dry forearms for the past three years. Poof - gone - vanished I have realized, couldn't even tell you when. No other change in my life could have produced that.

Nackapan
Nackapan
in reply to Litatamon

Glad to hear improvements continue. How often atd toh injecting b12 now. I ask as I'm in a bit of a relapse if seems.

Litatamon
Litatamon
in reply to Nackapan

Nackapan, I am so very sorry to hear. Hope things improve. Feel free to PM me at any time.

I inject sometimes every other day still (cyanocobalamin - so remember not absorbed as well) due to neurological symptoms. But often it becomes closer to twice a week.

I tried methyl, in an attempt to switch, two weeks ago but it did not go well. Second night didn't even sleep, all night. And many nights problems sleeping. Since original loading (cyanocobalamin) my sleep was been life-changingly beautiful! I also was really emotional/overly emotional with the methyl. I had some life issues but I did not feel level, despite that impacting me. I was excited to switch to methyl as I have a single kidney, and am worried about it. But no thanks on that experiment!

It is unfortunate because I could feel the positive change with absorption with methyl - went close to two weeks feeling no need for another shot.

Cyanocobalamin is so incredibly cheap here so will probably stick with it until finances change.

All the best to you.

Nackapan
Nackapan
in reply to Litatamon

Thanks for your reply. I'm hoping to get improvements again

Decided to stick to 2 weekly hydrox at present to keep things in a pattern for a while and see. Its every time I try and do a tiny bit more

I mean tiny

I went out door to door fir 1hr 20m

Involved a 10 min walk. Lots of sitting. Bank and 2 shops in my get up to avoid light. Hat glasses.

Thoroughly enjoyed being out. Was then on he bed from 1.

Headache followed the next day. Ridiculous price to pay.

Hey ho.

You try and keep s best you can

Litatamon
Litatamon
in reply to Nackapan

Sorry Nackapan. That's very frustrating. In the beginning I felt so much energy I tried to go back to regular biking, working out, simple activity levels etc. Felt fine while I did it but like you paid for it later.

I also got a rude awakening in the last month. Stress definitely impacts it all. I literally had some cognitive and leg strength issues return for a bit while I was dealing with some stress.

On a positive note yesterday I looked down and realized some really bad burn marks (car exhaust -classic car)I have had for six years are changing/fading - they didn't change even a little in all those years. I have also noticed that there is not one bruise on my legs - usually I have multiple bad ones of unknown origin (this could be vitamin d getting better as well).

Honestly Nackapan with everything you're experiencing I would still be considering a tighter much more aggressive schedule, just to see for myself. To cross that off so to speak. But of course I am not a doctor!

All the best.

Nackapan
Nackapan
in reply to Litatamon

Thanks. Actually I'm usually full of bruises!! Mind youI've not been doing much to get any. Uaually from bike riding I think or walks. My vit d just okay .

I was on every other day for some time then weekly tgen 2 weekly

I tried a couple weekly again and tried 3 weekly. I've only once had what people describe as the boost of energy. I was buzzing and had ti really take care that day not to do too much that one day .i did of course small scale.

I will consider again if this continues. I'm 15 months in now . Have got a referral to s neuro opthalomogist as I'm convinced it's the signals from eyes to brain gone hay wire.

Hope you continue to see more signs of progress. Lavender oil great for scars .

Hello, remember if we are b12 deficient, then we have more problems that just one, when our blood is not right, our body needs other things: I have low iron, low B9 & D3, , however when I take my little dose of my new liquid iron, i get warm and the leg tiredness goes away. i also have D3 in liquid, I feel these work better for me.

the best thing I know to do, is try more vitamins,,, most will help more than harm if you take too much... hope U feel better SOON

Thank you!! X

Thank you. Yes i take iron and vit d . Was just wondering about the rotation of other vits. Especially folate as that's one thing that's been okay so far. Infact on the dose on the multivitamin took me above range as I said!

I've been stunned by the things that have improved since I've started my injections. I started getting headaches about a month in and discovered my vision had substantially improved and I needed new glasses. The headaches have now come back ad I need to go back in again because I think it's improved again.

I don't bleed when I brush my teeth anymore and it used to pour. My dentist didn't know what was happening to my teeth and my gums last year but now the gums definitely look healthier and the bleeding has stopped.

I used to vomit about 3 days a week on average. I've only vomited one night since I started the injections two days before Thanksgiving.

The horrifying gas and diarrhea I used to have daily is gone. People in line at the grocery store would comment on the noises my stomach was making. It was humiliating.

I remember hearing my 70 year old grandparents talk about waking up and being in pain and they were describing my daily aches and pains of life at 20. Of course they just laughed at me and didn't believe me but I've never felt this good in my life. I had more aches and pains as a teenager than I do now at 38.

I seriously feel like I have super powers. I joke that I'm Spiderman. I had no idea this was what life felt like for normal people. Every issue I've had my entire life seems to be going away entirely or improving significantly.

And I had a super nasty cold in December where I lost my voice and it was just... nothing. I felt silly staying in bed and the doctor had me on antibiotics and steroids for it. So I was actually sick like a normal person would be sick. But even that was like nothing compared to just a normal day for me as far back as I can remember before I started the injections. It's unreal to me.

utsavjari
utsavjari
in reply to Orangecow

How frequent do you take injections?

Orangecow
Orangecow
in reply to utsavjari

I take 500 mcg daily right now. My doctor has said it's wasteful but she's also admitted it won't hurt me and if I want to "waste my money" that's my choice. They wanted to fight with me about I much I "needed" so I said screw it and bought my own. Best decision I've ever made.

Sasical
Sasical
in reply to Orangecow

In what form do you take it?

Wow thanks! that's just great to hear

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