Medical treatment

[PhilAB]

Can I ask if anyone on this forum has actually received full support from doctors who understood the condition and felt that without question they had been well looked after, given excellent medical advice. And left feeling that their illness had been treated and dealt with right from the beginning?

[Nackapan]

I've had 2 weekly b12 injections on prescription. Wa referred to a neurologist.

2 mri brain scans

No understanding of condition.

Lots of drugs offered on a trial basis.

It's been a battle.

Hard work to say the least

How are you doing?

[PhilAB in reply to Nackapan]

Been a horrendous two years of healing and trying to recover. I worked out within a week that the NHS have no interest in my health or recovery. Although, reflecting back on years and years of medical negligence by doctors and medical practitioners I was already done with them.I was out on 2x per week but my research led me to believe at least daily is best. I take methyl and hydro as well to make sure that I get a mix so if one better than other I will get it. Obviously, take separately.

I also went immediately onto an organic gluten and dairy free diet. I have also found a way to try and reset my gut health so I can start to absorb b12 again. I feel it is reversible.

Physically, I feel 30 years younger my knee, shoulder and back injuries which physio made no difference to have healed with regular b12. I get bloods done every few months as I take some ferritin as well as about twenty other supplements.

Moving to Cornwall soon, growing my own fruit and veg and chickens and ducks. So I can trust my food source. Brought a lot of land in order to achieve this.

Brain fog haunts me daily and my cognitive abilities still suffer.

How are you?

[Nackapan in reply to PhilAB]

B12 is thd only thing that's brought improvements as well.I've come z long way thank you in nearly 4years.

Also take supplements.

We have sn allotment so veg good.

Back to my 'normal diet .

Most media cooked from scratch nos I'm able.

Batch cook.

Regained weight loss.

Presently having vestibular physiotherapy.

Can now watch z little TV!

Still can't read a book or book or bills!

Aiming at present to try sbd esln further abd yearning to get on my bike.

Have triec s couple if times bug 'sets my head off'

Will get there even ag 🐌 pace.

Do glad to hear you are feeling 30 yests younger!!! Wonderful

[Narwhal10]

Great question Phil,

I quickly read your bio, 😁 and noted your post with your supplements. I love to get a background picture and know a bit more about people.

The short answer is no. The long answer, I have 2 diaries - have done for years. One is of symptoms, the other is of my private opinions of certain practitioners and their words of wisdom.

One year, I was back and for the same doctor, monosyllabic, dragging myself around, extremely poor cognitive function and in pain. But introverts clock things. They were prescribing yet another medication for my extremely low mood. I simply said Dr X, Where’s your fountain pen ? I noted they slightly blushed and said I haven’t had time to get it out yet. They quickly retrieved pen. Wrote the prescription (which also didn’t work).

The great doctors who are prepared to listen receive thank you cards. My private thoughts are usual surmised with a couple of words. Being a big Black Adder fan (those abroad, it’s Rowan Atkinson in satirical humour). The expression,

‘Thicker than a whale omelette’ is a firm favourite.

I’ve met quite a few omelettes on my journey. Maybe their brains have been scrambled ? 😂

[PhilAB]

I have many new supplements now, learn adapt and improve. Mostly organic ones although hard to find what I want. On a recent blood test a doctor pulled me asking about my regular blood tests. Upon learning of my condition she then asked me about my health and treatment as her best friend has b12 d and has not improved in several years. I then explained to her about b12 health and she would not let me go for 45 mins. After writing down several pages about b12 and begged me to tell her where to buy b12. Her knowledge not only about b12 but other aspects was frightening to say the least. I started this post because I already knew the answer. I just hoped that some people would start to realise that relying on the NHS and frankly uneducated doctors is pointless. You want to look after your own health your the only one who really cares and will lead to improvement.

I have bumped into several people with PA, I tried to help them and explain their doctors don’t know about b12. They don’t even clock when I ask them have they actually improved over several years following current medical advice when they answer no.

I don’t understand some people, they don’t know about b12 so I have no idea why you would trust them about anything medically related unless you want anti depressants or anxiety pills. Which by the way will damage your gut, the reason for PA.

I learn stuff everyday, a year ago I learnt about the dangers of seed oils and how they are linked to inflammation and autoimmune. Butter and lard are crucial.

[Hidden]

Hi Phil .I think this has been a steep learning curve for the majority of us on here and I’d guess that very few can put hand on heart and say yes I’ve been fully supported by my medics regardless of position,gp or consultant in whatever field of expertise.I’ve met more expensive PLANKS than I care to mention and I’ve now,like yourself and probabaly many others,decided enoughs enough.

I will no longer finance their cushie lifestyles while I continues to suffer needlessly and I most definately do trust my own capabilities more than I do them now.

We were brought up in the poorest parts of Glasgow and taught not to question our betters when it came to doctors or hospitals so all my young sickly life I just accepted I had “ growing pains” when I was in so much pain and thin as a stick because I probably just couldn’t get any nourishment from an already poor diet, I recently found out that as a 3 weeks old baby I had surgery done because I was very poorly,I had always wondered why I had this big scar up the front of my tummy but never questioned it. I’m still researching that one but understanding more now and worked out it’s why I have P.A.

As far as I’m aware they restructured the Ileum during surgery because I couldn’t keep food down I still have some work to do on that I’ve been poorly for a while so not up to much brain work.

I’ve been self injecting for a couple of years now,I’ve seen every expensive consultant you can list,some very nasty pieces of work some very kind,especially when they’re holding out the card readers for payment.

I have zero confidence in any one I’ve seen,as soon as I struggled to pay them the kindness went right out the door.

We are pretty much on our own unless we are exceptionally lucky and find a genuine medic to support us,I never have and just been left dissapointed time after time.

I’ve recently did some genetic testing for my thyroid and results came back saying Yes I’d inherited the faulty DIO2 gene from BOTH parents.

That was a complete waste of energy and money , knowing that has not benefitted me one bit because the gps and even an endo consultant have no idea what to do with that info so refuse to acknowledge it.

Like you say what’s the point “heal thyself” is the best advice I’ve ever heard.

Best of luck Phil.

[Hidden]

Yes, but I was living in South India at the time and my Doctor had a special interest in B12 deficiency. I was surprised on my return to the UK how much ignorance and how unsympathetic clinicians were so I opted to self treat, I'm pretty much off grid with my treatment, although my GP knows.

[Cherylclaire Forum Support in reply to Hidden]

The ENT consultant who recognised my B12 deficiency by observation (not blood tests or any other tests) was Indian. He liked my GP's report and could quote from it ! He told me to continue to self-inject every other day, to persist because it would take me a very long time to get better. He was right.

My GP also knows that I self-inject because I told her the day after I started- in case she tried to talk me out of it. She diagnosed me with functional B12 deficiency. Over the years, she has sent me to several gastroenterologists, neurologist, rheumatologist, dietitian, physiotherapists, haematologist, oral medicine consultant and inherited metabolic diseases consultants who looked at my DNA. She told me she would not give up, and she didn't.

These two people have helped to keep me from deteriorating even further.

I was lucky - but know luck should not enter into this.

[pitney]

😂we should be so lucky, in 12 years I have only once felt that the person I was talking to was really interested and understood why I was basically treating myself. Good luck with your move and your new life I sincerer hope you continue to feel better 😀

[MoKayD]

I had to diagnose myself and ask my doctor to test my blood for B12 but when my GP saw how low my B12 level was he immediately ordered loading doses and monthly shots for life. When my first GP retired shortly after my diagnosis my new doctor understood B12 deficiency and allows me come in for a shot whenever I want to (without an appointment). He also gives me prescriptions for self injection. So I guess I've been lucky with my doctors but I still had to diagnose myself which seems ridiculous.

[charks]

I think a lot of the problems patients have with doctors is the fact that many of them don't have a 'calling'. They become doctors for the 'wrong' reasons, They are atttacted by financial rewards or the high social status physicians enjoy. Or they have been been pressurized into becoming doctors by their ambitious families. I think a lot of doctors think patients are an inconvenience that they have to put up with in order to finance their nice lifestyle.

I may be wrong but this is the impression I get whenever I see one. They just don't seem to care. I also had to diagnose myself. My doctor didn't know anything about B12D. He thought my neurological symptoms meant I had something wrong with my brain. I took time to send my GP all the relevent information about B12D before I saw him. I knew he was busy so I just gave him the bare facts. It would have taken him less than a couple of minutes to read it. He didn't bother. I was lucky. He referred me to a neurologist who diagnosed B12D and ordered PA tests.

[Pickle500]

I think Doctors are human beings. And we, and they, forget that as we're sort of conditioned to see them as gods.

But they are not gods. They are humans, like us, who just happen to know more about biology and science.

But as with all humans, they make mistakes. They're fallible. But also, their training does not include anything much at all relating to nutrition. And since B12 relates to nutrition, it's the domain of a nutritionist, surely?

There is a global lack of awareness of the need for B12 in the body. This is simply evident by the explosion in veganism and vegetarianism to solve the planet's troubles - climate change (reduced meat production) and general health (red meat is losing popularity and is wrongly considered carcinogenic...which only applies to the cooking process, not the meat itsel).

We are headed for a global health disaster of epic proportions. And that's because these trained human beings do not know anything about B12 and it's essential power in the body. They consider it a lower league problem, or something easily remedied with a few injections to get blood levels up.

The best thing we can do is raise awareness. We can campaign and we can highlight to vegans, vegetarians, global public and people at high risk (e.g. women entering mid-life when menstrual problems make them more vulnerable) that eating meat is the ONLY way to get B12. And if you have PA, then injections are the ONLY way to replace B12.

What we need is an established, firm deficiency level and upper/maximum level. We also need to completely rethink the functions of the body. If we place nutrition at the CORE of medical science, it will radicalise treatments and move the world towards healthy choices.

When there are GP's in practice who specialise in plant-based 'lifestyle medicine' we are already fighting a losing battle. Because there is no way they have even the slightest realisation that B12 is an essential vitamin - they're promoting plant eating for health FFS!

It is our job, as sufferers, to change this. But of course it is not going to be easy, and we will be seen as 'weirdos'. But it's weirdos who changed the world, not the establishment.

[Narwhal10 in reply to Pickle500]

Very eloquently put Pickle500.

[PhilAB]

Your sounding like a conspiracy theorist?

I agree with much of what you are saying. I spent 20 years being an educator, I say this will no false modesty but I was an absolutely outstanding A Level teacher. When I started I was awful, but I adapted, my ego was not large like these doctors. I questioned, I cared, I soaked up knowledge. And even when I became the best teacher based on results I still changed, improved and learnt from others. Not found one doctor that could do this.

The system itself in medicine is totally flawed, they are not trained, not allowed to question, believe in their own superiority and are just paid and controlled by pharmaceutical companies.

Was I the smartest and most intelligent teacher no I wasn’t, but I was willing to learn and out my students first over my arrogance and ability. It actually contributed to my health issues, as I had students telling me I do far too much for them.

Doctors for me are in a flawed system, which does not adequately train them properly and they are pressured to make money.

Ever single person here does not get anything close to the medical care they need, yet we trust them and the medical system. I find that absolutely bonkers.

[Pickle500 in reply to PhilAB]

It's not a conspiracy if it's rooted in reality

bbc.co.uk/news/health-43504125

nutritionsociety.org/announ...

nutrition.bmj.com/content/e...

tmc.edu/news/2019/09/food-f...

heart.org/en/news/2018/05/0...

[PhilAB in reply to Pickle500]

Pickle500 I was being facetious, as what you are saying is similar to other theories which people just label as conspiracy theories even on this forum. I know everything you have said is true. I have spent the last two years trying to inform as many people as I can.Apologies if I never made that clear. I am trying to make people question, perhaps I am not doing a good job.

[Narwhal10 in reply to Pickle500]

Thank you for the links.

The British Medical Journal is a firm favourite. One link has a link to the Lancet (another British medical Journal) and I hadn’t heard of Heart but JAMA (The Journal of the American Medical Association) is also on my reading list.

So basically the research, articles, peer reviews by doctors and researchers. Unfortunately, in their highly pressurised jobs they may not find time to keep up to date.

[Pickle500 in reply to PhilAB]

I'm sure you were a very decent teacher. I've worked in education and in teacher training, and most teachers in deprived areas aren't even close to being ready to teach children living in difficult situations - FSM, learning difficulties, emotional troubles etc. They need ongoing CPD and most can't hack it and leave the system. But also, how can a single teacher provide individualised learning to a class of 40? They can't. They can only cover the basics. And if a kid is lucky enough to have a functioning family, maybe they'll pick up the slack.

For Doctors, they are working with two complexities - lack of time and lack of holistic thinking. A patient can't be treated holistically, and symptoms are 'not related'. Well, I believe there are.

When you have 4 tumours in different body parts over 1-2 years, can you tell me there's no connection between them?

Doctors are now trying to treat people holistically with 'lifestyle medicine', but it's missing the mark. Plant-based diets are not the solution to obesity and type-2 diabetes. Lean, well farmed meat that's cooked well is the answer. Awareness around the risks of fast, processed food is needed. McDonald's, KFC, etc are destroying our cells. We need healthy food, which costs money. We don't need to 'shift to a plant-based diet'.

The irony is, when I call my surgery, the hold music gets interrupted by someone telling me that 'most health issues can be avoided by following a healthy, balanced diet'.

Well, can someone tell me what that healthy balanced diet is please? Since any GP I get through to will either not know or tell me to eat more leafy greens

Give us strength

[Narwhal10 in reply to Pickle500]

Holistic, individual care for me every time for me.

Wow that’s a great message at your surgery. 🙄

When my ferritin was extremely low, I was asked

Are you eating more spinach and green stuff ?

Well, spinach is an oxalate, I’m severely intolerant (I didn’t add what the chemical formula was) but my best mate is grinding up slabs of steak because I’m having difficulty swallowing.

I didn’t bother saying I insist on feeding myself even though I struggle with coordinating my hand to my mouth and the disability cutlery (sorry if I haven’t used correct terminology) I find more cumbersome as for me they are too heavy.

I’ve progressed a long way, still learning and will always give back here. So, grateful for this place. 😁

[PhilAB]

Organic diet involving lots of meat, fish, butter, lard, fruit and veg. Cut down on sugar, it is shocking to see how much sugar is in ALL foods. We also need to eat less as obesity and type-2 diabetes is rampant.

[pejka62]

I can say for certain I have a Doctor that understood the lower B12 immediately. My B12 reading was about only 100 and my regular Doctor was going to give me one shot only and when the reading, (3 days later) got to over 200 she said that was all the shots I needed to get. I disagreed after reading several articles on B12. I found another Doctors who immediately saw my history and suggested I give myself a shot once a week for one year. (52 shots) This was about 10 years ago now and I still have some nerve damage in my right leg but overall I'm 80% better than I was. I was on crutches a good part of the first year until the nerves that were weaken but not dead from the low B12 started waking up. I feel that if I would have stayed with the first Doctor, I would either be in a wheel chair now or have passed on. The second Doctor saved me because of what he knew about B12 and the damage it could inflict on your body if not properly addressed. JP

[Rocky]

It's not just about them learning about nutrition, people with Pernicious anaemia have an autoimmune condition and the Doctor's and specialists should all be trained in recognising, testing and treating autoimmune condition's correctly. They should also be trained in knowing that people with one autoimmune condition can go on to develop other one's too. The name Pernicious anaemia already indicates it is a very serious condition and we are just ignored and treated like it isn't. We are never going to be able to get our B12 from food or B12 tablets, and that is why we are prescribed B12 injections. I am sure we would all love to just eat some healthy nutrients and not have to have an injection. We have no choice because it is a life saving injection for a very serious autoimmune condition

[Pickle500 in reply to Rocky]

Yeah, agreed.

The problem I've also noticed is that some practices suggest the 'Pernicious Anemia will be cured after loading doses', suggesting Drs conflate B12 and folate anemia with the autoimmune condition with anemia in its name.

They simply don't know. And I think its compounded by their lack of confidence in nutritional deficiencies

[aksundell]

I suspect that people whose doctors have given them the care they needed are not on this forum. They got better and have moved on. My Dad’s PA was diagnosed early and he has had the standard treatment and it’s been a non issue for him. I don’t know what percentage of people’s symptoms respond with oral medication or a few loading doses and then spread out injections. It could be a large chunk of the B12 deficient. I’m so thankful for this forum so I can keep getting new ideas about how to help myself get better since every doctor I’ve seen has been fairly clueless beyond some very basic info and they don’t want to go out on a limb into what to them seems like uncharted territory. My primary care doctor has done lots of tests and referrals but won’t prescribe the b12 I need. They don’t want to be seen as quacks or to go out of what they see as standard practice, it makes them vulnerable. There needs to be more research, publications and education about what seems to be a very large subset of us who respond atypically, so we are identifiable and recognized by the medical establishment

[PhilAB]

I would say 100% that people do not just get the correct treatment and not post on a forum. They more likely just deal with the condition and it just worsens.I think they would be at least a few decent souls who got treatment and would post on here what helped them and the support and advice the doctor gave them.

I have yet to speak to one person that has been like this in two years. All day the exact same story.

[deniseinmilden]

Not here - Drs and nursing staff clueless.

Neurologist didn't see why I should be having the problems I was having but saw that I was improving on daily injections so didn't stop them.

Gastroenterologist at specialist hospital was also OK about my own treatment protocol because it was working.

[Sleepybunny]

Doctors no help here.

I was shouted and snapped at and told I was costing too much money, eventually pressure was put on me to leave one GP surgery....

...probably because

1) I was persistent in insisting there was a physical problem underlying my 40 plus symptoms

2) I challenged the diagnoses I had been labelled with eg ME/CFS, psychosomatic symptoms, hypochondria, fibromyalgia etc

In the end I worked it out myself.

Even though I'd had a below range B12 result in the past and my symptoms were typical of B12 deficiency and I supplied information showing my original treatment for the low B12 result had not followed the guidelines, they refused to treat me on several occasions.

I ended up self injecting and finally started to improve but took many months to see clear improvement because I'd been neglected for so long.

[wedgewood]

I’ve only experienced ignorance and hostility from the medical profession regarding Pernicious Anaemia. I have come to the conclusion that doctors like to deal with drugs that are provided by the Pharmaceutical Industry . When I was so very ill with what turned out to be P.A. my GP would prescribe anti-depressant tablets freely . When I got my official diagnosis ( from a private doctor ) I was only allowed 1 injection every 3 months, although that left me on my knees . GP would not budge . I was in total despair . I won’t go on …..It upsets me so much . Its disastrous for many people who can’t find the PAS and it’s forum .

So you have your answers now . Shocking , isn’t it ?

[Narwhal10]

Just an aside. I’m grassroots - raise aware when I get out and about. Several weeks ago, I was walking into my block of flats, thinking

‘Narwhal, 30 more steps, you can do it and flop on bed’. I had music playing (I find it useful to distract brain from pain - although years ago, I couldn’t listen to anything as it hurt my brain).

Anyway, big purple clad delivery driver came down the stairs. I jumped, apologised and said wow I’ve not seen your company before, do you do gluten free. Yes, they were gluten free themselves, ever since hitting a certain age. Interesting,

HAVE YOU HAD YOUR B12 checked. It’s fine but they’d got pins and needles in their hands and their feet are numb. They hadn’t realised they had a drawing pin stuck in the bottom of their foot until the clinking in the shower.

The doctor has assured me. Ok, what was your result 134 mg/L. Our lower threshold is 130 mg/L. Mine was 126 and I was like this - did an impression of my ataxia and tremors. They thought for a moment, then said my mother has P.A.

Then they piped up. They knew a microbiologist who researched vitamin C, it’s benefits and great healing effects. Now, some BODY came along and offered the microbiologist a hefty sum not to publish. I do wonder who has access to £1 million at a drop of a hat.

Food for thought 😉