Hi just looking for advice on supplements. My B12 was just within range 230 i think. Anyway to cut a long story short, one dr advised supplementing with over the counter supplements. next visit said we could not do further testing as I had now skewed the result. I have since come off the supplements and b12 went back down then told by different GP "why dont we just forget about all this" I am now back on jarrows 1000 since April. My question is does the supplement do the same job as injections, should I push to find why I have the problem. I have a lot of restless legs lately and am feeling very tired. Any advice welcome.
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Gambit62Administrator
Some people do respond to high doses orally - 1000-10000mcg a day - as 1% of B12 is absorbed outside the ileum but it doesn't work for all.
It does sound as if you have an absorption problem and that you may have been clinically deficient for some time. Unfortunately B12 isn't just about the amount in your blood as that is just a transport mechanism - and its really about what is going on in your cells ... but most GPS and even a load of specialists really don't seem to have grasped that.
Injections are obviously going to be much more efficient at getting B12 in to your blood. There are other possibilities which try to use other membranes for absorption - and in likely order of increasing efficiency they are: skin patches, sublingual tablets and sprays and nasal sprays.
It would be better to push for a formal diagnosis of an absorption problem - and have other potential issues ruled out. Symptoms of B12 overlap considerably with other conditions including thyroid and diabetes so important that you really do get the right treatment though B12 won't harm you as it isn't toxic even at very high doses.
There are some good materials in the pinned posts and on the PAS website itself. You might also consider formally joining the PAS as they can provide professional advice and some support, eg in dealing with your GP.
• in reply toGambit62
Thank you for your help, will I be able to get a diagnosis as I am supplementing. I am also on vit D on prescription as I was very low. I have private health care so I could push for an appointment with them to find out if there is an absorption problem. I do have very bad bloating and constipation. Also high Feritin, which can be caused by inflamation, so I am wondering if the inflamation is coming from the gut which could cause poor absorption.
fbirder• in reply to
You could ask for an anti-IF (Intrinsic Factor) antibody test. If this comes back as positive then you almost certainly have Pernicious Anaemia and will need injections for life. A negative result is meaningless.
People with PA normally have very low, or zero, stomach acid. This can cause havoc with the gut. Some people find taking an acidic drink (cider vinegar or lime juice) diluted with water helps.
It's also a good idea to take probiotics to get your gut flora balanced. Symprove is good, but expensive. Bio-Kult is nearly as good, and a lot cheaper. Raw organic sauerkraut is also a good alternative.
dealing with a private doctor can be as fruitless as dealing with NHS but might be worth a try - but you could go with trying to get tests suggested by fbirder done on NHS first, and trying to investigate what is happening with the gut as it does sound as if you may have low stomach acidity - which, whether caused by PA or not, - would impede B12 absorption. low stomach acidity is often mistaken for high stomach acidity as the symptoms are very similar and treated with PPIs which just make the situation worse.
would definitely push to get the cause of the high feritin investigated.
• in reply toGambit62
Thank you, I will take your advice and try my GP to get those tests done. I don't hold out much hope as I said the last time I went she said " why don't we just forget about all this " really helpful.
very irritating.
Why does she think that there is a Pernicious in pernicious anaemia? Left untreated it can cause irreversible nerve damage and will eventually lead to death, either because the central nervous system breaks down entirely, or because you have a stroke or heart attack.
• in reply toGambit62
If I am taking Jarrows 1000 a day, will this not do the job. Are restless legs a symptom of b12 deficiency. Also occasionally I get a burning sensation in my feet.
One possible cause of restless Leg Syndrome is B12 deficiency - and the burning sensation in your feet could also be caused by B12 deficiency - both would be classified
1000 mcg a day taken sublingually may be enough. For some 1000mcg a day orally can be enough. It certainly won't hurt. However, people are very different in the way they respond to delivery methods - so if it is making a difference - if not then you could try increasing the dose or looking at another method of delivery - but as you have neuro symptoms already you do need to push for proper treatment if you can get it - loading shots every other day until symptoms stop improving (review at 3 week) followed by maintenance every 2 months - though even that may not be enough - but it is the minimum that you should be getting.
• in reply toGambit62
The problem is now that I have been supplementing my GP said they could not now test for PA as the result will be skewed. My levels did go up to 750 with the supplements. Would I still have symptoms at that level. thanks for your help.
Yes, you can still have symptoms of a cell level B12 deficiency with B12 levels of 750 - if you have been supplementing with high dose B12 then the serum B12 test doesn't really mean much unless it comes back as low - showing that the supplementation isn't working and more is needed.
B12 deficiency isn't about the amounts in your blood it is about the amount that is available to be used by your cells. The amount in your blood is part of that but only a part.
What are you folate levels like?
fbirder will be in a better position than me to comment on the actual position in relation to IFA testing - you will need to stop supplementing for a while but think it depends on exactly which testing method is used as to how long you need to stop for
dogmman10• in reply to
Bloating? sounds like yeast to me. Low vitamin D ? Your not taking statins and avoiding sunlight are you ?
What foods go you normally eating ? High in carbohydrates? Maybe that's your real problem.
Everyone is different. I have PA and the only thing that helps me is an injection. Some people benefit from either patches , nose spray or sub- lingual lozenges . I have tried everything but it has to be Hydroxocobalamin injections for me. Have you been tested for antibodies to the intrinsic factor? If positive It proves PA. if negative it does not disprove it ,. The injections are the most efficient solution if there is an absorption issue. 230 is low and you need supplementation . Yes you must find out the reason . Are you vegan or strict vegetarian ? B12 is only found in animal products . Have you ever had stomach surgery ? Do you take any B12.destroying medicines like Metformin for diabetes or any PPIs like Omeprazole for acid reflux? Do you have low stomach acid which hinders B12 absorption . You need plenty of stomach acid to break down the animal products, especially meat which is the most difficult .
I was not treated when I had a low B12 reading . As a result I have a problem which is now irreversable . It's luckily not serious . But I had to go to a private GP to get my diagnosis . I hope that you manage it with your GP. You will have noticed that many contributors to this forum have a tough time to get the correct treatment . I get it now that I self-inject . Best wishes .
• in reply towedgewood
Thank you for your help. No I am not a vegan or vegetarian. I have had a hysterectomy but thats all.
Honestly, can you really expect to get answers from doctors who prey on the public. That's how they make a good living. Have you tried magnesium supplements (NOT magnesium oxide) for the restless legs. And for God sake don't go running to the doctor asking to know if your low on magnesium .
• in reply todogmman10
I do take statins but I don't drive so I am in the sunshine more than most people.
I don't really want to sound too off base. But why in the world are you taking statins.
Sure sunshine is fine but since your taking stains you're lowering your cholesterol , right ? . You need cholesterol to live even for brain function . Did you know you can not produce vitamin D without cholesterol and sunlight exposure.
• in reply todogmman10
I have been taking statins for about 5 years for high cholesterol, as I have heart disease in the family it seemed the best way to go. I didnt know cholesterol had anything to do with Vit D. I was told you can only absorb it through sunshine.
dogmman10• in reply to
Hi ann22, Do you know that half of the people with normal cholesterol get heart attacks. In my book that's a fifty fifty chance of dying. I personally don't like those odds.
How are your triglycerides and HDL. Another important marker is homocystein. Those things are by far more important than total cholesterol.
The medical industry loves compliant people, I was once one of them.. That's how they make money .
Hi ann22, Do you know that half of the people with normal cholesterol get heart attacks.
No they don't.
Supply proof or stop posting FUD
Assume that by 'normal' you mean 3.5 to 6.5 mmol/L. About 55% of the population fall into that range.
Assuming that nobody with levels higher than 6.5 get heart attacks (highly unlikely) you're saying that 27% of people get heart attacks.
Patently ridiculous.
The British Heart Foundation say there are around 7 million people living with cardiovascular disease. Even if all of them have a heart attack (highly unlikely) that would be 11% of the population.
In the US normal is thought to be under 200. According to my online calculator your mm range is to my understanding in US measurements 135 to 251. Quack doctors in this country recommend getting cholesterol under 200 . 5.172 mmol/l for the nice people in UK. That's considered the best level but I've heard that some quacks advocate getting it to 100. Trying to drive cholesterol out of the body won't prevent heart disease. In fact some knowledgeable doctors believe statins can induce diabetes, brain related problems and decrease CoQ10 levels.
Irrelevant.
Provide proof for your ridiculous claim or withdraw it.
Let the people who read it decide for themselves.
That's what you said last time.
youtube.com/watch?v=fA1qh4S...
Irrelevant.
You are displaying all the typical signs of a troll-
Post a provocative statement designed to inspire fear, uncertainty and doubt in other forum users.
When asked to prove the statement you post long extracts from irrelevant or non-scientific sites in the vain attempt to move. The argument away from your original FUD.
Your next step will be to claim that you're just posting to help people and that you're being bullied.
Get back under your bridge.
amazon.com/Great-Cholestero...
youtube.com/watch?v=V0U4Ofr...
have nice day
Again, irrelevant.
Post proof of your assert action that 50% of people with normal cholesterol have heart attacks.
dogmman10,
You say all doctors are quacks so why are you posting videos by doctors? Why is this? Because they are on the always factually correct
(sarcasm) internet? Or because you agree with them?
You are not medically trained- obviously- or why would you have tried to inject a vitamin capsule into your muscle?
As the saying goes, a little (unverified) knowledge is a dangerous thing.
Please try to show a little humility and respect if you are going to post on this forum. If you have medical information to share, it should be based on sound science and backed up by same. A biased opinion is not helpful to anyone. In other words, put up or shut up.
As a fellow American, I resent your pugnacious and know it all attitude. I wouldn't want anybody to get the idea that all Americans behave as obnoxiously as you have.
PAS-adminPartner
Even though I personally agree that statines are in general really crap and one should only take them if nothing else helps and that cholesterol is not as bad as 'they' say.....
This is a forum for B12def and PA. Please get back to that topic, and leave the cholesterol for another forum.
This topic is about ann and her questions about B12 and supplements. Please only reply to that. I consider the cholesterol discussion closed and posts about that will be deleted by me. Thanks.
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