Unexplained weight loss (so she now eats biscuits, cakes, chocolate to make sure she doesn't lose any more, and my dad makes her a high carb breakfast every day)
Poor balance - she feels as though she's going to fall forwards & she struggles on steps & stairs (fell downstairs about 5 years ago)
Dizzy spells, 'Funny' head, Poor memory, Confusion, Low mood, Irritability, Fatigue, Painful shoulder & arm, had lots of mouth ulcers about 2 years ago
She takes a PPI which can cause some of these as a side affects & can also cause B12d
She is a month off 80 so I'm aware that this could all be age related. I suggested she get checked. I wrote down her symptoms so she wouldn't forget when she saw the doctor, who gave her a thorough examination & blood test. She has a good diet with plenty of animal/fish protein.
Serum B12 - 161 ng/L (range 145 - 910)
Ferretin - 118 ng/L (range 10 - 150)
Result 'B12 is normal, no further action indicated'
I've just spoken to her doctor who is adamant that this 'is NOT a B12 deficiency.' Balance was fine when she walked down the surgery corridor, falling downstairs is too long ago to be relevant, mouth ulcers ditto, dizzyness probably BP or vertigo.
I explained that there was a definite improvement with her fatigue after private B12 injections, and she said that happens even if you have no deficiency, so not relevant.
She wants to monitor her BP & weight, and will provide a prescription for vertigo.
It concerns me that the symptoms are being viewed individually rather than as a whole.
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Thanks for coming back to me, I'm very conscious that I don't want to blame all the worlds ills on B12d, and I'm open to it being a red herring, but B12 is cheap so at least give it go. Mum won't SI and I'm not confident to inject her yet, but paying aesthetic clinics isn't realistic for the loading doses, despite having a very well priced one. I was hopeful that the doctor might be persuaded to help. In the meantime she has another injection booked this week.
I made sure that she tested before doing anything. She's now taking a supplement, probably standard rather than high dose tbh.
She has had 2 private injections, which were 2 weeks apart after blood test results were in.
Folate not tested. Going to request, but will recommend mum supplements alonside injections anyway.
I agree, how can it have any affect you if you don't need it. "The lab said the result is normal," so obviously the labs are now diagnosing us!
They are moving to a bungalow tomorrow (thank goodness no stairs, though she struggles with the front step) in a new area so will need to change doctor anyway. She's going to do what the doctor says for now, aswell as private injections, then when she moves I'll write to her new doctor and try and force the issue.
Your mum's levels of B12 is very low. In most areas she would qualify for B12 supplementation.
I'm not a doctor but I think that her symptoms aren't age related but caused by her low levels of B12. I had many of her symptoms and they resolved after B12 supplementation.
From what you say your mum's GP is very ignorant about B12 and you probably won't get much help from her. Nackapan's right. Try some oral B12. I take oral B12. But I have to take a lot - 15000mcg daily because taking it orally isn't as efficient as injections. I dilute high dose (5000 mcg) B12 liquid in water and drink it throughout the day. Don't use tablets as they are also inefficient. They pass through without being absorbed properly.
Re losing weight. I have the same problem. Your mum needs to eat more protein not chocolate cakes and biscuits. They are empty calories. Older people need more protein to maintain muscle mass and strength, bone health and other essential physiological functions. Even healthy seniors need more protein than when they were younger to help preserve muscle mass.
I hope this helps as I have been through the same sort of thing she is experiencing and it is horrible.
That's what I thought, and the doctor agreed it's 'low' but she doesn't acknowledge that mum has symptoms.
Protein isn't an issue I don't think, my parents eat plenty of meat, fish & dairy. I'll maybe look into a protein shake that she could use at breakfast rather than cereal every day.
I started with tabs, before I found the private injections, and my levels went up by 30ug a month! When you're starting at 80 that's not great. I felt absolutely nothing of course. The 1st injection cured my tinnitus, which was very mild, and the 2nd my restless leg. I'm hoping for great things now I've started loading via SI.
I'll see about the liquid B12 for mum, that might be a good alternative to injecting. Would that work as a loading dose or does she need to go down the injection route?
It worked for me. I dilute about 15000 mcg of liquid B12 in water and drink throughout the day. This is because the B12 is being absorbed passively which is very slow and inefficient. A constant supply of B12 in the gut will make sure enough is absorbed.
With neuro symptoms present, my understanding is that she should be on treatment pattern "for people with neurological impairment" which is in above link.
Hello, I have to agree with Nackapan and clarks. Your mother's B12 serum level is very low and i believe is causing her symptoms, not ageing as such.
Her doctor is very mistaken, misinformed in her views, i dont care how adamant she is. Symptoms can develop over years .
Injections would be ideal or if not possible, high sublingual B12 drops. I s.i. plus take 3000 mcg adenosyl/methyl bio active drops (under tongue) once to 3 times daily, as needed .
When I say liquid I am talking about sublingual liquid. But a lot of research indicates that taking B12 sublingually doesn't work because the B12 molecule is too large to cross the mucus membrane. The research suggests that sublingual B12 only works because it is eventually swallowed and goes into the gut and is passively absorbed. Which is why i dilute the sublingual liquid in water and drink it.
BTW. I started on tablets but when I switched to diluting sublingual B12 in water I started to get dramatically better. It was amazing.
Incredible that your Mum is on a PPI, and the GP says she can’t have a B12 deficiency especially with all those symptoms . To me , that’s unbelievable! Change doctor or surgery asap .
Why is Mum taking a PPI ? and for how long ? GP's hand them out like smarties.
As her B12 is so low I think it is important to also test Folate - Ferritin - VitD. Folate and Ferritin are good mid-range and VitD around 100. By the way saying a result is 'normal' is an opinion rather than a result ! Range starts at 500 in Japan 🌞
Is Mum taking any other meds in addition to the PPI ?
She has reflux and has been taking it for 3 years that I'm aware of (I did the prescription run during the pandemic,) but I'm sure it was a good few years before that, so plenty long enough to have side effects.
They only did Ferritin, so I'm going to make sure she has a list for the new doctor. She takes vitD, and folate has just been added now she's supplementing.
My husband takes DGL Liquorice tablets for reflux, you chew one and they work really well for me too. If your Mum is ok with the taste of liquorice perhaps they might be an option to ppis?
It was her craving during both pregnancies, and she still loves it. Thanks for the rec. I'll get hold of some, my partner has the same problem and has been on Omeprazole for years, so maybe I can persuade him to try it. He's getting his B12 checked soon, just in case
I suggest UK forum members track down the local B12 deficiency guidelines that their ICB - Integrated Care board in England or Health Board Wales/Scotland are using.
If you can't find the local B12 deficiency guidelines by searching online or by searching forum threads here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines are used locally and for a copy of or link to them.
Might also be worth searching online using terms "B12 deficiency elderly UK".
NHS link below says
"Both vitamin B12 deficiency and folate deficiency are more common in older people, affecting around 1 in 10 people aged 75 or over and 1 in 20 people aged 65 to 74."
Many of us on here have watched elderly relatives struggling with health issues linked to B12 deficiency. I watched my mum fade away into dementia and I'm convinced she had B12 deficiency.
When you have the time and energy, work your way through the pinned post "Various PA and B12D resources."
I'm not a health professional just someone who suffered for years from unrecognised and untreated B12 deficiency.
Everyone has been amazing discussing b12 with you and the lovely thing about b12 is you can’t overdose so if it made some improvements then continue. Age is not a reason for failing health. Has mum had all of her vitamins and mineral levels checked? There’s one in particular that Drs constantly fail to check in our older population despite it being so obvious it should hit them in the face and is responsible for falls, weakness dizziness etc and that is vitamin D!!! Some of our older generation don’t get outdoors so much and severely lack vitamin d and it’s responsible for many falls which then evolve into loss of confidence moving around then depression and isolation cause a whole myriad of symptoms. If you do investigate this avenue please know vitamin D should be taken with k2 and needs to be taken with a fatty meal (butter would suffice in a sandwich) for absorption. I can recommend a good one by pm if needed where you can read people’s experiences with their product. Good luck getting to the bottom of this. Don’t let anyone fob you off with “age related” issues. PPI’s stop absorption of all the things we need!!
Not medically trained but pretty much hits all the symptoms of b12d.
Research will show you b12d linked to so many illnesses.
Regarding diet - it’s terrible. If she losing weight then rather than eat cancer causing cakes and biscuits, eat raw organic milk, butter raw and organic and eat organic grass fed beef making sure you eat all the fat. Organic coconut oil, organic eggs. We been li d to for decades as animal fat one of the best things to eat.
My husbands gp stopped B12 after 6 weeks and ignored neuropathy and memory issues. Wouldnt give another course or every other day. We saw a B12 specialist privately. He said it was lowest B12 he’d ever seen and the test is if in doubt give a course of injections. If they work then there is deficiency. My husband is now on B12 for life. Many months of every other day now trialling twice a week. After him writing to go saying nerve damage may now be permanent we get vials on script. He also told him b12 would not poison anyone as this was his repeated mantra. Trouble with steps could be neuropathy try a good podiatrist to check feeling in feet. Try another Gp.
Back in 2016, I was found to have a B12 deficiency where my serum blood test result was 196 ng/L. With a local "normal" range starting at 197 ng/L, I was very lucky that they started loading injections immediately. I remember that my GP said she was relieved that they'd caught this just in time.
Later, due to being unresponsive to the injections (by then, a maintenance injection every three months) and continuing to deteriorate, an MMA test confirmed my GP's suspicions: I was given a diagnosis of functional B12 deficiency, confirmed by the testing laboratory. My injections were increased to two a week. The difference was very soon visible - commented on by my delighted GP and several nurses, one of whom said "When you first came for injections, you were grey."
This is not a numbers game. It is a debilitating condition that can cost you not only your health, but also your job, friends and family, your confidence, personality, energy, memory... and I do believe that a supportive GP willing to pull out all stops to help your mum despite poor/no information given during training is way more important than a fruitless search for a B12 expert.
I think GPs are missing opportunities to make judgements based on observation, but if they are unable to look, they really need to listen. Bloods are not where the story lies.
There is logic in everything you say: you have accepted that your mother's age may have some relevance, the symptoms sound like a very good fit with B12 deficiency, PPIs are know to have an effect on B12 and inexplicable weight loss should always be thoroughly investigated.
A refusal to even consider B12 deficiency could mean a lengthy process of elimination to get the GP reluctantly onside. Is it worth looking for one that is less adamant that this is not an issue ? I think so.
I found that GPs, even in the same practice, can have very differing views about the severity of B12 deficiency and the attributable symptoms.
PS: Glad about the move to a bungalow. Does this also mean a GP surgery move ?
I once did a self portrait and called it "yellow grey days" !
I trusted my GP.
She trusted her own judgement - an experienced doctor has seen most things enough times to know they do not all present the same way in different patients.
Continuity important and face-to-face appointments. How else can they judge your condition ?
Starts from the waiting-room. They call your name and wait; how do you appear: better or worse than before ? what are you wearing ? how do you acknowledge your name call ? how mobile are you ? who is with you, and for what do you need their help ? Even before you reach the office, they will have been monitoring your condition. An early start helps with the 10-minute rule.
That's just good practise. If they aren't allowed to use their experience in this way, how can they do their job ? A certain level of autonomy should be the right of established professionals at the top of their game.
No wonder so many of the better ones left.
Let's hope your mum finds herself a really good one !
I hope the next one is better, but I'm not building up my hopes. It has been a long time since I met a GP who cared how I felt, I'd settle for someone competant these days.
If your Mum is eating cereal daily, it'd be worth checking if it's fortified with B12, which would have elevated her low B12. I hope you don't have to wait too long for help.
I think it is wise to not discount something else going on. I was unable to walk upright had incontinence,mouth ulcers, heart rate accelerated, arrhythmia, fatigue, weight loss, swollen hands, hair loss, pins and needles and gurgling feeling in legs and pain all over. I asked for a B12 test and it came back 110. I was told I had PA. Simultaneously because I’d had recurring chest infections I was referred to hospital consultant for further testing. When she saw me she was so concerned she referred me for full investigations and then I was told I had Mixed Connective Tissue Disease diagnosed by AnA antibodies.
Auto Immune disease is common with PA. Don’t discount something else going on too.
I’ve had HPylori confirmed now and atrophic gastritis. I’ve received steroid treatment for Connective Tissue disease and antibiotic treatments for H Pylori and I SI every week with 8 weeks GP B12 and am functioning again. There might be something else going on too. Sorry to say. I haven’t told my GP I SI IM.
You should tell your doctor you're SI ing, just because they need to know that what they prescribe doesn't cut it. You're doing nothing wrong, you'd admit to taking multivitamins......
just to add I asked my My GP to check for my immune system. He said he could find nothing wrong with me. And then when my results at my request for a B12 test came back wit B12d he said at least it wasn’t cancer! Don’t expect anything from NHS.
I really don't expect much. I'm hypothyroid & B12d (no idea of cause yet) and I'm treating both myself based on wanting a life. My previous doctor took great exception, not sure how the new feels yet
Hi Debra, I'm not certain that this will be helpful but on the face of it, it would appear that the problem may be regulation of the metabolism. Instead of carbo loading is it feasible to introduce an organic apple cider vinegar to the diet. In my experience ACV has an amazing ability to bring issues related to metabolism into balance.
While many take ACV to lose weight (obviously the exact opposite of what you are wanting to achieve), it's been my experience that the inverse can be true if the reason for the weight loss is an imbalance in bile duct and gallbladder functioning.
Further to this point screening for bile duct/gallbladder issues may be something you might want to research. If it were myself I would look into this as a possibility.
I'm not suggesting that I know the answer but I get concerned when I hear of people carb loading to fix an issue.
That may be a good approach. ACV is generally best 20 min before a meal. I find taking in the morning and in the evening a good strategy. 2 tablespoons with 500ml of water each time is my personal approach. However, that's just me.
I would consider screening (maybe an ultrasound) the gallbladder though, make sure nothing is going on there that shouldn't be. Just some thoughts.
Further to, apologies for raising the gallbladder issue again , I have no idea obviously, I'v just had a couple friends have close calls with that. I'm sure you've explored all potential issues. Hope the ACV proves to be beneficial : )
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