Help! Have any of you had all normal tests for b12, but had it treated anyway and it helped???

[Suffering_sunny]

All of my b12 tests have come back normal and all antibodies negative...

I have tingling, numbness, muscle aches, bone pain, period changes, globus, headaches, joints clicking, dry eyes, nose mouth, etc, cold hands and feet, cannot exercise, cannot work, GI changes, I feel like death.

Every test I've had has been normal, I at my wits end.

The only thing to go on was a couple of low normal b12 tests over the years. And one normal active recently.

Now my MMA has come back normal, and antibodies normal.

I am so scared.

I started b12 therapy just over a week ago, and I am absolutely terrified that I am putting my body under more strain.

I need anyone to let me know if they have had all test be normal - but they self injected and it worked?

Cannot stop crying.

[Suffering_sunny]

I should add that the last normal active test was taken after I took supplements.

My b12 serum was 285 in September and I felt like hell.

My ferritin was borderline - had an iron infusion last week too.

I am just so overwhelmed and I get so anxious now about my health.

[Oneash in reply to Suffering_sunny]

Well if you were taking B12 supplements and they do work, it will affect the test. Injections are usually for those who can't absorb it. However I don't know if it's as clear cut and you can be borderline. Basically B12 is water soluble, you pee out any excess. It works hand in hand with B9 so eat your greens, or better still liver paté, then you get both.

Big hugs. Try and relax. Dr Sten Ekberg, on YouTube, talks about how if your body is in fight or flight mode, it switches off healing. He says good things about anti inflammatory diet too.

[Technoid in reply to Oneash]

Take care with Sten Ekberg

m.youtube.com/watch?v=IFGvs...(Not working as expected?)

[Oneash in reply to Technoid]

He backs up what Dr. Robert Lustig says about artery clogging cholesterol being created from sugar. Eating high fat, high cholesterol food doesn't do damage, if you count the calories, and don't eat it with a load of carbs, that are switching on the insulin and fat storage system. Obviously you don't need much volume of fat to get to your 2000 calories. But you will find it more satisfying and sustaining, combined with green leafy vegetables and some protein, which it's often with anyway.

[Technoid in reply to Oneash]

Lustig is a firehose of nonsense. Keeping calories under control is a good idea but 2,000 calories might be too little or too much for some, it depends (I eat a lot more calories than that). If you jack up saturated fat beyond 10% of calories, there is a risk of elevating ApoB so don't be lulled into complacency about this by quacks. There is nothing uniquely fattening about carbohydrates - dietary fat is more readily stored as fat than carbohydrate if the overall calories consumed are in excess.

Have a look at some of the resources in my profile if you'd like to learn about nutrition science.

m.youtube.com/watch?v=LZPKT...(Not working as expected?)

[OldmanD in reply to Technoid]

Agree 100%. . . . . Man I dislike near to every one of these youtube quacks. . . . . And my daughter has choice words about them. . . . . . . They are there to make money not to help. . . . . . They start more fads promoting this that and god knows what . . . . . They are so convincing. . . . . So much in that country is about money. . . . And Canada wasnt any better . . . . .

[Oneash in reply to Technoid]

Dr. Lustig just explains scientifically how things work in the body, from what I've watched. There's a huge sugar Corp. loby out to get him. But I will check out what you say.

[Technoid in reply to Oneash]

Put some time into Layne's response above and you will see the issues. There is explaining how things work in the body and there is making claims that are not supported by the evidence. Lustig does quite a lot of the latter.

[Oneash in reply to Technoid]

youtu.be/UhPskgH2HQA?si=mEy...(Not working as expected?) think this knowledge about fat is very important considering many folk are dealing with nerve damage with PA.

Calories are measured by burning food in a test tube and seeing how much raises 1g of water by 1°C. So Lustig's argument there is 2 fold. Does that food actually do that in the body cell mitochondria? Also if I eat 100 calories of white sugar, I quickly get some energy that may stimulate my insulin fat storing system. If I eat 100 calories of mackerel, I get energy over a longer period of time, with added ingredients that my body needs to function. So calories aren't equal. Yes if I eat 4000 calories of either a day, I will put on weight, if I only burn 2000. I agree with you there. But one I am more likely to store in my thighs, the other in my liver.

I wonder how many of us grew up eating margarine, trex/crisco cooking fat, lots of sugar on breakfast cereal...... I know I did.

Eat some wild fish and don't heat the olive oil.

[Technoid in reply to Oneash]

Nobody is suggesting that 100 calories of white table sugar is nutritionally equivalent to 100 calories of mackerel, please be serious.

Excess dietary fat leads to greater fat accumulation than does excess dietary carbohydrate

ref : sciencedirect.com/science/a...

Are you trying to give me dietary advice? I have postgraduate training in nutrition.

I won't be eating fish and I'll definitely heat my olive oil now and then. I advise you to make a closer study of Layne's response to Dr.Lustig, I think you will learn a lot.

If you have a serious interest in learning how to discern sense from nonsense, I posted a recent course offering from the founders of Sigma Nutrition on "Nutrition Literacy".

[Technoid in reply to Technoid]

Lustig is scaremongering as usual based on theoretical mechanisms that don't pan out when tested:

"Low heat is typically between 200 and 300 degrees Fahrenheit (93 to 149 degrees Celsius) on an electric stove. This temperature is ideal for cooking delicate foods that require gentle heat, such as sauces, custards, and poached eggs.

Medium heat falls between 300 and 400 degrees Fahrenheit (149 to 204 degrees Celsius). This heat setting is perfect for cooking a wide range of foods, including vegetables, meats, and eggs. It is also ideal for sautéing and stir-frying."

from medium.com/@gasstoveinfo/me...

"Our findings suggest that heating edible oils to common cooking temperatures (≤200 °C) has minimal effect on TFA generation whereas heating to higher temperatures can increase TFA level. This provides further evidence in favour of public health advice that heating oils to very high temperatures and prolonged heating of oils should be avoided."

from Influence of Heating during Cooking on Trans Fatty Acid Content of Edible Oils: A Systematic Review and Meta-Analysis

ncbi.nlm.nih.gov/pmc/articl...

Using mild/light olive oil for frying may be a better choice, or better yet, Canola/Rapeseed Oil.

m.youtube.com/watch?v=yD0vo...(Not working as expected?)

On the Omega 3's, you can get plenty of EPA/DHA from algae oil, if you so wish, which is widely available. Lustig can't even pronounce DHA properly which is mildly amusing.

[am111 in reply to Suffering_sunny]

Your symptoms suggest a B12 deficiency. Since it is long-standing, it will take time to cure. The normal test was on supplements which is natural. You should continue your B12 treatment but in my experience, over-treatment doesn't help either. You could go for weekly shots till full resolution of your symptoms. Good luck!

[Mixteca in reply to Suffering_sunny]

To comment further on what Oneash said about fight/flight mode, your brain can get stuck there, so please do everything you can to calm down your nervous system as the consequences can be even more frightening - I know as I'm in that place now.

We are all different of course, but some of us are more susceptible to such dangers, particularly if already living with chronic stress & anxiety or/and trauma.

Here are a few articles to read along those lines:

psychologytoday.com/us/blog...

ajmc.com/view/the-effects-o...

[OldmanD in reply to Mixteca]

I lived for years with at least one attack per hour and often more . . . . . It is so exhausting. . . . . . . Really burns up energy. . . . . . I was not overweight then. . . . .

[GW1000]

Have you had a homocysteine test? My other NHS tests, including MMA, were all in range - I did have a below range Active B12 from Medichecks that the GPs ignored - but my homocysteine was high. Injections have helped. I got worse again when my 3 times a week ones stopped. Am back on them now and hoping to feel improvements soon. It took about 7 weeks to feel a consistent benefit the first time.

[Orchard33]

Normal results are a problem in primary care. GPs will not look beyond the numbers and see/ hear symptoms. I no longer accept a normal result when I have symptoms and I'm struggling. With PA and it's associated conditions there is precious little normal. You had a ferritin infusion last week which means your ferritin was low and has been worsening over time. It's taken six weeks for my infusion to begin to work. At first I felt awful. Now I'm feeling slowly better.

[Suffering_sunny in reply to Orchard33]

Did you get iron flu? I feel horrendous too, how long did you feel awful for?

[Orchard33 in reply to Suffering_sunny]

About 3 weeks and then a very slow improvement. After six weeks I have a way to go. My body has probably been shocked by the infusion and will take time to adjust and begin producing efficient blood.

[Hectorsmum2]

Having injections will do you no harm at all. It is best not to supplement before tests as it can hide deficiency on cellular level. My B12 was well over range due to supplements when tested but I didnt get better untill i started injections.

[wedgewood]

Sorry to hear about your plight . Taking oral supplements would have raised the B12 level in your blood . But obviously not in your cells . You need injections asap . Read what Hectorsmum2 has so say . It’s good to be in charge of your own health .

[B12again]

For years I was told my test results were normal. I was going to my gp at various intervals complaining of bouts of fatigue, tested and always told normal. These were becoming more often, two yrs ago I collapsed on a beach whilst fishing, all strength suddenly gone, couldn’t see as eyes blurred over, breathless and could hardly talk. I just managed to phone an ambulance giving ‘what three words’ position on the beach. I was taken to a hospital tested and scanned, guess what, told all tests normal. I have since got a copy of my medical notes and was amazed that the lab flagged low serum B12 about 2yr ago and 3yrs ago but it seemingly was ignored probably the receptionist told me it was normal. Last year things went from coping to my lived life disappearing rapidly, brain fog, confusion, balance and gait difficulties, tingling and darting pains in my left hand, poor eye focusing and dreadful fatigue. I can’t remember why (totally ignorant up to this point) but I started suspecting B12 deficiency, my wife then pointed out an article in the Daily Telegraph 🇬🇧 by a research scientist named Hooper (not PAS) who specialises in B12 vitamin and deficiency. Its then that I thought I’m on the right track. I eventually got to my loading dose and was feeling better after 4th jab. This was then the start of a journey into ignorance. Through this forum I was able to start self injecting and now feel loads better but the journey to get a proper diagnosis and the treatment I need under the NHS continues. I suggest you concentrate on getting treatment for B12 deficiency/PA which seems a likely reason for much of what you experienced. Even to self injecting eventually, you will be supported here on your journey.

[Suffering_sunny in reply to B12again]

Thank you for this. I started self injecting recently. I'm on my 4th loading dose, but I also had an iron infusion so I feel horrendous until iron flu passes. My b12 like symptoms have heightened but I wonder if it's because I am so run down, as expected, after infusion. I read some people get worse before they feel better so I am still praying.

I am very warm, lots of palpitations, myalgia and all of my b12 like symptoms too. Life is hard, I pray this will get better.

[Suffering_sunny in reply to Suffering_sunny]

The Dr said this is normal post infusion, iron flu can be very rough but it does pass.

The b12 stuff he said it can get worse before better. He expects a month or so before I get over the hump. It's brutal.

My emotions are pretty raw right now, trying to keep distracted as best I can

[B12again in reply to Suffering_sunny]

I don’t know if you’ve heard of Dr Chandy, he describes this feeling of getting worse before improvement in his book as ‘reversing out’. The book would be well worth getting (£6 on Amazon), it’s called ‘B12 Deficiency In Clinical Practice’. He was a GP in the North East until retirement in 2019. He became very knowledgeable on the subject of B12 deficiency, even a hero to many of his patients who credit him with giving them their lives back. Sadly, he died (in his 80’s) just before Christmas last year. His book describes his the experiences and insights he learnt over 30yrs of his journey with B12 deficient patients, including case histories of those who gave him permission for inclusion. You will find very accessible in terms of language and helpful as a reference once read. To your health. 🙂🙏

[Suffering_sunny in reply to B12again]

Thank you, I will order this one too. I appreciate your response

[B12life]

what was your b12 level before your first ever injection?

[Suffering_sunny in reply to B12life]

I had serum 260, serum somewhere similar again, serum 285.

Then I had a normal active reading...

The 285 and normal active was after supplements...

My private Dr still says that this could still likely be b12.

He says that these tests are 'notoriously unreliable' and symptomology is key.

He also says MMA is not a good test either.

[B12life]

well I was 190 and felt like death. 265 is very low in my book speaking from experience. Docs just don't understand b12 deficiency enough to recognize it.

is this due to not eating meat? If so, just supplement orally with high doses of b12. It will take a long time. Otherwise if you eat a lot of mean and got this low you have a definite absorption problem. Medications like proton pump inhibitors and metformin can deplete B12 but if you are not taking a medication that depletes b12 and you eat meat, you have an absorption problem. In which case if docs won't help you, order your own supplies online and start injecting daily.

It's been 3+ years and I feel much better but I still need daily injections. Others can back off. Everyone is different. B12 is stored in the liver. It takes 4 years to deplete that store and show low levels so your stores are depleted. You will need to inject and get the levels up which will take a while.

Read this:

ncbi.nlm.nih.gov/pmc/articl...

[KBird01]

I can see you have several things going on here and you shouldn't underestimate the impact of low ferritin. My was 'in range' but bumping along the bottom for years. The 'globus' you described was one of the symptoms of low ferritin.

I didn't have an infusion, but started on iron supplements. I felt a noticeable difference within 5 weeks, with better energy levels, the lump in my throat going, less aches and brain fog. Hopefully with your infusion you'll start to feel the benefit even sooner.

It's easy to be sidetracked into thinking the answer lies in just one direction, but in reality there are often several areas for us to address. Sounds like you are doing the right thing and I do hope you start to turn the corner very soon.