It’s been a while since I was here, I hope everyone is keeping well.
I am hoping someone here can help me. My daughter who is 19 recently came back from the fair covered in extremely large bruises. This worried me so we spoke with the nurse practitioner who advised blood tests.
Her B12 came back at 75, she was immediately started in injections and advised another blood test after a month. When I rang for the blood results the receptionist told me everything was fine. This week when my daughter spoke to a GP we found out that she should have been taking B12 orally because the blood test had shown the levels were still really low.
Sorry for being so long winded. My question is that my daughter is extremely low in mood, I don’t want to diagnose her but possibly depressed. Could this be due to B12 deficiency? Has anyone else experienced this and any advise to improve it because she’s too tired to really want to exercise (she usually loves dancing).
Thank you in advance
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Jaiday
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Yes b12 deficiency can cause very low moods and having little or no energy at all. It's really concerning that even after injections your daughters levels are still low, tablets will not raise the levels if she cant absorb them. My opinion only .... is that she should be having more b12 injections and her doctor should realise this.
I m so sorry to read this, non of my business but is she on the pill ? Why I ask is this can really cause depression, and am pretty sure it affects b12.Other than that more B12, or in supermarkets you can get b complex vitamins. (Or even multi vitamins with B12)
I really hope you find a solution, also it takes a while for b12 to get into the system (two three months).
Thank you for your reply. Yes she had the 6 injections. Then waited a month for a blood test. We were told that they had checked IF and all was fine.Folate and Ferritin were really low too.
Sorry for repeating anything you’ve already been told.
Get a printout of her blood test results and check them yourself or post them on here.
It’s usually…..Low Ferritin (Iron), Folate, B12 and Vitamin D cause you to feel terrible.
A negative IF test doesn’t rule out PA.
The good news is all this can be treated quite easily.
She needs
- regular injections for B12
-5mg Folic Acid
-Ferrous Fumarate for low Ferritin (Iron)
- Vitamin D if low (as low Vitamin D can cause depression symptoms)
If she takes these for 2-3 months her levels should be almost back to normal.
It seems like an absorption problem and low B12 causes low stomach acid which causes absorption problems for other vitamins mainly the 4 named above.
With regular B12 injections, F Fumarate, Folic acid and Vitamin D together with a good diet she can feel back to normal.
Vitamin D about 4000iu daily if low (best to take combination of Vit D plus K2).
Sorry I don’t know If you’re in UK, if you are you can get organic Beetroot Juice from Tesco or Asda called Beet it for about £2.69 for 1L which is really good for anaemia and low iron (250ml glass daily) in the morning will really help and increase levels quickly.
I hope you can get the injections from your Dr as tablets won’t do much if there’s an absorption problem you will need injections. A lot of people buy their own B12 injections and self inject.
Someone has already mentioned but tell your daughter to read up on B12 deficiency symptoms.
Low iron, Low Folate, Low Vit D symptoms or maybe you can Google and print out something easy to read on these 4 things.
She will feel much better once you have raised the levels of the above and it most likely is this as I felt like I was dying and felt depressed and couldn’t function with all these being low.
Just a quick comment re beetroot juice, I don't know the Tesco one personally as I drink other brands, which are 90% beetroot 10% apple. I hated it at first but v quickly got used to it. All the best x
It is 90% beetroot and 10% apple. It’s not Tesco’s or Asda brand, it’s James White brand which is sold in Tesco and Asda and probably more places. You can Google Beet it juice.
What’s worrying is the receptionist says everything’s fine when obviously it’s not. She probably saw the level was in range but that doesn’t mean everything is ok if levels are on the low side and patients tend to believe what they are told. Obviously you took it further but I think it can be dangerous for a receptionist who is not medically trained to give that info . I realise a dr could have looked at it and done the same thing that’s why it’s important to get a printout of results @nd go by how the patient feels.
I’m so sorry to hear about your daughter, the impact it has on her life and as a mother, you want the best for her. Like Nackapan said ferritin, folate, vitamin D must be checked and ask for a print out of results.
Is there any family history of PA, or autoimmune diseases ? Coeliac disease ? Thyroid ?
List any symptoms she has and keeping a diary is also useful. Our symptoms are wide and varied. b12deficiency.info/signs-an...
Yes, lack of vitamin B12 can impact on mental health, low mood. (I’ve cried at cute puppies on tv more recently and have lost several years to misdiagnosis). It also causes fatigue, so she may have the motivation to dance but on getting out of bed, getting dressed she may feel absolutely exhausted. That in itself can cause depression.
One of the best things I found (which works for me) was the Twelve Spoons Theory for managing fatigue.
I do believe, like others she does need more injections, so writing to your GP may be the best option.
It is heartbreaking, she had only been away at University a month, when she came home for the weekend and fell asleep on the kitchen floor. She looks absolutely shocking, extremely pale, a mouthful of ulcers and a patchy tongue. Trying to get her to eat at the moment is a nightmare and she has always loved her food.
The Spoon Theory looks good, I’ll show it to her and have a chat about it.
Those all sound like symptoms of B112 deficiency. Why don't you get hold of some B12 ampoules and try injecting her yourself, or get her to inject herself. There's plenty of info around re dosage and how to proceed. If Dr Chandry of b12.org is still helping people, try him. He doesn't charge.
Also, I find B12 patches (methylcobalamin) lift my mood. Oral B12 supplementation did nothing for me, even though the doctor was telling me my B12 levels were high. It was getting into the bloodstream but still going wrong. Contact me if you need help re finding B12 ampoules.
Just to confirm re dr chandy. He telephoned me twenty years ago, spent over an hour going through my and my family history and b12 deficiency. He is fantastic even offering to pay for b12 himself out of his own pocket. If he is still communicating with sufferers you couldn't wish too speak a better person.Good wishes
Thank you for your reply. I’m at a loss as to what to say to her because she is just crying, staying in her room and avoiding people and she doesn’t know why she feels so down
I should know better than to accept that response, they’ve missed my low levels before. I’m sorry to hear about your care being affected by something being missed
Yes, it was my levels that were low and they refused to treat me. I never got anywhere with it. I don’t tend to prioritise myself, but this is my baby girl and I will do everything I can to make sure she is well again.
I came here again for advice because you were all amazing last time
The advice and information from here is brilliant. I’m a nurse, but this is information you don’t learn unless you need it, so to be able to draw on this in respect of patients and how they feel is fantastic. It helps to be able to advocate for them
Yes I'm doing the same. Was in the NHS for 36 years. ( NHS pension mucked up as NHS bid lost and not git back in before too ill to work. ...another story . A battle lost as can't do it retrospectively) shafted as my ex colleagues put it.
Not a nurse but Nursery nurse working in many clinical settings, community snd hospital
Have many friends still practising. .one a practice nurse . Does b12 injections but very very little knowledge around it
I still hit a brick wall at times trying to open ex colleagues minds.
Especially Gps. A close friend now retired still insists I don't need ' all these b12 injections ' !!!
Was. shocked what happened to me.
Shocked neverchad a b12 test before. and knowing me as stoic and well before dealing with loads if stress ect.
The belief of 6 loading doses abd 3 monthly injections cure all and you will be skipping down the street In their hard print and hard to budge.
I've offered to be a 'case study at my surgery . ( then covid)
Gave them posters.
Most think of me as sensible so find it difficult to shut me up lol
Also witnessed in 'windows' how ill .
To date 31/2'yrs on no other cause found.
No medication or condition prior.
3 opportunities missed to do a blood test and treat.
Obviously wasn't thinking straight as didnt ask ??
Just presented with falls f,atigue , aches out of character anxiety but very aware of it snd just wondered what was going on. I thought my iron was low .
I was told 3 times menopause and stress and age by different Gps . I'd not been for 7 yesrs . No red flag.
Unbelievable now .
Also annoyingv as if they had tested and listened snd did the basic blood tests the outcome woukd I'm sure be better.
As was a full on caring for mum sbd daughter cleaning 3 houses . Odd paid work after NHS lost the bid .
Gps did not listen I was getting ill snd knew it.
To falling over snd not being able to lift . Even bought a shopping bag on wheels. After an elderly woman carried my shopping as I was clearly struggling. I accroted to ....very out of character . I was the helper.
I like everyone on here woukd like more medical understanding and help.
Guidance
Thus forum so important.
One Gp out of 6 finally diagnosed ne and eventually prescribed 2 weekly b12 injections ' off label '
When j hot the information ftom here.
A hard battle when ill.
But with one 5 week gap after loading got online.
Still is opposed if repeat prescription is picked up by snother Gp.
When she retires ....who knows .
I didnt bombard information when able and acquired from here but trickled it in.
Even a few quiet sit ins when refused an injection
The nurse thst took an interest left unfortunately. She saw me ftom the beginning not being able to stand up. Using the walls to bounce off sitting on the pavement to fall into a cab. Ect ect . She asked and listened about symptoms .
I was hoping on my notes .
Unless I've no access to that part of the record ,nof there ??
On several occasions when every other day b12 I jections restarted she'd get the Gp.
Convinced too many .
Even though a neurologist on board by thrn. ( paid for!! )
Saying my symptoms were not from b12 deficiency. As I've had loading doses so not deficient now ....
Very scary at the time.
Found thus forum when barely coukd see print and having daily hradaches/ migraines. Only able as systemone at wotk got me a bit more I.T savvy
Determined to know what to do . As medics failing me
My Gp tried all sorts of ways yo get me on drugs . A few tried.
Then ' humoured me as dudnt know what else to do with me .
I wad a 'bad penny ' that kept prrsenting myself to her.
She has been baffled
If heavily drugged coujd easily have curled uo in a ball. Scary.
Has labelled me initially with mental health problems then changed her mind
A continuing battle over 3 yesrs on as no other answers
I realise all entwined but we know ourselves.
So good you are doing the same.
From the 'inside '
Many nurses on here
My mother has b12 Injections .
My daughter damaged by not getting them in time or even tested .
On b12xinjections .
Then me in that order.
Surely medics should consider these family links and predisposition to certain conditions .
My brain is waking up again.
Do continue to broaden awareness. Get it on the staff training agenda.
Get posters put up
I took thrm in but werntv'approved by the practice.
Annoyed binned rather than returned .
Most importantly.
My message is to get proper treatment for everyone.
At present your daughter .
I've been there.
Long post but your post triggered it
Repetition for alot but new members all of the time .
Early treatment , diagnosis less damage better outcome.
Oh dear, your poor girl she needs every other day injections until no further improvement....and immediately.
Can she change doctor's in the practice?
Keep a daily health diary, can't stress this enough, this is what got me the correct treatment in the end. I had to fight for it, not easy when you feel so awful. I asked for my diary to be kept in my medical notes & I requested a copy was also given to the neurologist prior to my appointment.... he said he wished more of his patients did this as he found it really helful. It was him who immediately got me on the correct treatment.
I really feel for your girl, I was practically housebound for a year, and yes, lay on the floor many times, while all the time being told my blood results were fine. My mood was very down too, I was offered (& took) antidepressants at one stage which sent me nuts (whole other awful story).
I am now doing well, I picked up really quickly once I got the right treatment. There will always be ups & downs with this deficiency but I now know how to manage it for the best results.
Really hope things turn around for your daughter soon....good luck 🤗
Yes I get really down and had terrible headaches. Keep getting tested. If she does not have the enzyme called intrinsic factor she cannot absorb from food or oral tablets. Ask to get tested. Hope that helped. I inject 1ml every week and just added back sublingual tablets .Hope she gets better soon. Blessings to you both.
Thank you for your reply, it is helpful.Everyone’s replies are really helpful. It just makes you realise that you’re not alone and that something can be done.
Just be aware that the b12 form of methylcobalamin can produce an "off" feeling in some people.
I have tried to take pills with my shots and in Canada it is difficult to find pills that are not methylcobalamin, whereas the UK (I am assuming due to the word tablet) usually has cyanocobalamin for pill form.
_________
If none of the above is pertinent to her forms taken, it is most likely a need for more injections.
Hi. I had very low mood and was dealing with suicidal ideation fairly regularly due to the effects of the b12 deficiency. I didn’t think I would come out of that time and was feeling very hopeless.
But it took time and I did get out of it.
This is a scary time for her so I hope you can support her and provide reassurance.
She should take time to get better with injections - look into doing them yourself, in my opinion.
Then worry about the depression if it still exists.
Good luck and all the best to your daughter! There is hope
Some of us need loads of B12 on high frequency to feel well. Once she’s had injections the levels in the blood should be v high. I have had to self inject every other day for 18 months - it took a year for all my symptoms to stop improving! GP said I was fine! Low mood v common with B12 deficiency- see calculator on b12d.org
Yes, I feel so much more optimistic and able to deal with life when my B12 is up (I try to inject alternate days) but your daughter is, probably, also down at, firstly, needing medical intervention but, secondly, them not getting it right. It's very frustrating and depressing. We're in their hands. I choose my own way as well though, it's the only thing that keeps me sane.
I'm sorry to read that your daughter is having such a hard time.
I am going to post a lot of information so take a week or so to sift through it so it's not so overwhelming.
Some links may have details that could be upsetting.
A lot of people on this forum find that understanding of b12 deficiency is sometimes lacking in some health professionals. I think it's a good idea to do a bit of B12 homework in case the doctor has not done theirs.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed
(above link from Dutch B12 website - units/ref ranges/treatment patterns may vary from UK)
"She isn’t vegan and eats almost anything and everything"
I suspect that as she's young they may have assumed her B12 deficiency is due to diet.
Has she or you (with her permission to intervene) asked the GP directly what they think is causing her B12 deficiency?
Probably worth writing out a typical weekly diet, food and drink to pass to the GP. Highlight any B12 rich foods eg meat, fish, dairy, eggs, shellfish and foods fortified with B12 (some breakfast cereals etc).
Has she been tested for PA (Pernicious Anaemia) and coeliac disease?
See PAS (Pernicious Anaemia Society) website for more info on PA testing.
Worth mentioning any family history of PA, Coeliac or other auto immune conditions.
Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac and anyone with a first degree relative with coeliac disease.
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
Cobalamin is the scientific name for B12.
Low dose cyanocobalamin tablets (50 mcg) are sometimes recommended for those with dietary B12 deficiency. My understanding of UK guidelines is that severe dietary B12 deficiency (eg where neurological symptoms are present) is supposed to be treated with injections.
There are moves across UK to move more patients with B12 deficiency onto high dose oral cyanocobalamin tablets (1000mcg) as an alternative to B12 injections. This is often promoted as easier for patients. I cynically suspect it's a cost cutting measure.
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
Some local guidelines are not helpful so worth knowing what you are up against locally.
I sincerely hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum for how B12 deficiency is managed.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.
Best piece of advice I ever got was to always get copies of all my blood test results.
I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results, it happened to me. These days I don't accept being told everything is normal unless I have a copy of results in my hand or on a screen in front of me.
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