has anyone come across this? And did ... - Pernicious Anaemi...
has anyone come across this? And did you find it was any good?
Way back in 2014 when I first found out about my P.A. . I tried B12 patches for weeks , and found them to be useless for me. A scientist on this forum said that the B12 molecule was too large to penetrate the skin. He said that there was research on-going that might help . He said that some sort of micro- needling was needed , so that the B12 could penetrate the skin and be absorbed . I was wondering if the patches you illustrate are using a new technology, that makes them effective . I also tried sub-lingual tablets and mouth and nose sprays to no avail. . 😢! Injections are the only way for me . But we are all different , so I would be tempted to give it a go .
I'm afraid I agree with Wedgewood they did nothing for me either.
I used the one's shown in the link.
thank you Jillymo and wedgewood, this is good to know. We are thingking for my grandson (16y old) who had a dicky gut from Birth and is not responding to oral Cobalanin of any kind, but is showing some signs of improvement to the Boost sublingual spray, but the cost of it made my daughter search the internet and she found that link. She will be so disappointed, but on the other hand if sublingual works for him, then maybe the trans dermal is worth a try. We just aren't yet desperate enough ( even though we should be ADHD, Autism, difficulty socializing) to think of S/I for him.
His doctor is unfortunately like most of them. In his entire career he has never come across a single person that had PA or was B12 deficient, let alone a child.
Enough said
Exactly — enough said .If you are anywhere near Cambridge . . the doctors to go to is. Dr ********* who runs an iron clinic .at the Nuffield Hospital . He is very knowledgeable about P.A. ( or Autoimmune Gastritis as the new Nice Guidelines call it ) He became intersted in PA when a colleagues child died of it . Oops . I’m not allowed to mention Drs names .Ive just deleted it . I’ll send it to you privately .
I tried sublingual and yes it kinda worked but I'd have needed it by the bucketful an the price???. . . . .Yes the price
hello could you please private message me with that doctors name as I'm thinking I need another iron infusion ()last one was 15 months ago on the NHS)It would be helpful to know i can get one privately if need, rather than waiting for my levels to become so low and be chronically I'll again
many thanks
Might be worth posting separately about your grandson.
Here's a few links that might be of interest. Some details may be upsetting to read.
The new NICE B12 deficiency guideline is aimed at people aged 16 and over.
I have reservations about it but there are some good bits.
PAS (Pernicious Anaemia Society) have leaflets about juvenile PA.
pernicious-anaemia-society....
Children and B12 deficiency
stichtingb12tekort.nl/engli...
B12info blog has posts that mention children.
b12info.com/category/children/
These two books mention children.
They were published a few years ago so some bits may need updating.
What You Need to Know about Pernicious Anaemia and Vitamin B12 deficiency
by Martyn Hooper, former chair of PAS (Pernicious Anaemia Society)
Could It Be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and J.J. Stuart (US authors).
Very comprehensive. Lots of case histories.
I'm not medically trained.
I used Simple Spectrum which is designed for autism instead of a B-complex and found it effective. I stopped it as I decided to do trials to determine the efficacy of the different forms of B12.
When reading about supplementing for autism I found that children are labeled picky eaters with no regards to their neurological system is different which affects hunger.
I do not have a diagnosis of autism.
Thank you Wizard, I shall pass that on and probably also write your privately in thwe next few daysd
Hi totallyFrustrated,
Like wedgewood has said the B12 molecule is too large to penetrate the skin.
This paper discusses micro-needling within Transdermal Patches :-
ncbi.nlm.nih.gov/pmc/articl...
No need to read it all.
2. Surpassing the skin barrier
Only drugs with a suitable lipophilicity [ mixes with fats or likes them ] and a molecular weight <500 Da (this measurement is Dalton) can be delivered passively through the skin.
Methylcobalamin’s molecular weight is 1,344.4 g/mol which is 1.3 kDa so kilo Dalton. So, is too large because Size Matters 😉. Unless the patch contains micro-needles or uses little electric currents which is called electrophoresis.
Sorry to read of your grandson and the mucous membranes of the body are an entirely different route compared to the skin. So, I do hope they are effective for him. I have as yet to examine fully the science of sub-lingual and methylcobalamin and cyanocobalamin.
Best wishes
Yes, unless theres some very unusual new technology involved which as far as I'm aware hasn't reached the market yet, nor been tested to be effective, the patches most likely will do absolutely nothing.
"The evidence for nutrient absorption through the skin barrier is very limited, and many of the health-related claims are unsubstantiated. The companies need to provide proof for the claims,” JoAnn Manson, a physician, chief of preventive medicine at Brigham and Women’s Hospital and Harvard professor, said by email. “I would ask the companies to ‘show me the data’ — show me evidence that absorption is effective and blood levels of these vitamins and minerals increase appropriately.”"
Call me an old cynic, but I can't help but think they're suspiciously cheap!
I suspect that they're unlikely to make much difference.
Before my diagnosis I were very poorly so I brought the patches to see if they would help. I stuck that many on myself I looked like a damned dalmation ! There useless. 🤪
Not that one but very similar. Tried it for several months until I found self-injection. Absolutely useless. Also tried sub-lingual, etc., and needed really massive (like 25000 micrograms a day) doses to absorb even a tiny amount.
My advice would be not to waste your money but go for IM injections.
Agreed . . . . Wifey spent in vane buying things to try and stop me self injecting. . . . Some would work but ye'd need a bucket full to last a week and the expense of that?? .. . . I look back and have to say that we seem prepared to stick any amount of anything in our mouths without question but a 1ml sealed reliable ampoule bypassing the problem areas we have problems adopting. . . . . I was a convert and I would promote that. . . . . Provided that one is diagnosed and medicated under medics to begin with and therefore proven to be a sufferer I would say go for it. . . . . I woudl be against any sefl diagnoses because who knows where that could end.. . . . .
True, a diagnosis is needed first, but B12 itself is totally safe. A couple of temporary side effects for some people, that's all.
sadly, as I wrote his GP is totally ..... &*%&$.
He has never in his entire career seen anyone having B12 D or PA let alone heard of it in a child.
I suspect he must be the GP with 2 glass eyes.
Money is tight so we have to see how we can get him sorted etc. He has been on the list for Autism/ADHD assessment for over 5 years
Further to my previous comments, the money you spend on this could be put towards a private doctor. I went private for a time. Typically £100 for a consultation, plus blood tests that vary. Surely worth looking into, then have results sent to GPs.
I came across a research article that said all 600 people with ASD in study had functional B12 deficiency.
Search for "600 ASD functional b12 deficiency" to find it.
Wow, such great replies on here already and I agree with all of them. I've researched this also and there are no evidentiary studies that remotely suggest skin patches work. The B12 molecule is the biggest baddest molecule on the block by far. That's why it is the only vitamin that is given such special VIP treatment through the digestion process. Much like a super tanker needing many tugboats to guide it into part. Our port is the terminal ileum, the last part of the small intestine where our designers installed special receptors for the Intrinsic Factor that is bound to the B12. The receptors do not recognize the B12 molecule by itself.
Most molecules that work with patches are around the 150 to 250 molecular weight. I think nicotine is around 150 or 160'ish so these are easily absorbed through the skin. The B12 molecule weight is over 1,200 I think Narwhal10 has a more exact number.
Same issue with sublingual or nasal sprays. These claim to work and I do believe they work as a supplement but not absorbed through the mucous membrane under the tongue or the sinus mucosa. I mean, logically, what makes us think that B12 could more readily be absorbed through the skin, tongue, or sinus better than anywhere along the highly absorptive small intestine?!
So, why does sublingual seem to work for some??? My, I think, rather valid theory, is that no B12 is actually being absorbed under the tongue. However, unlike digesting a piece of meat where your digestive juices in the stomach first have to cleave the B12 molecule and then immediately it gets bound with an R protein that has followed it down with your saliva ready to do its job. The R protein is the first VIP escort that keeps this very special, prima dona, B12 molecule from being damaged by the digestive juices within the stomach. The IF will bind with the B12 after the R protein is cleaved in the duodenum. Well with many B12 deficient people that still have IF and thus some of any form of supplementation will work. What the sublingual benefit may do is that as the B12 is dissolved under the tongue, think lots of saliva and R protein, the B12/R protein may bind in the mouth before it gets to the stomach thus protecting more of the B12. But think, virtually ALL of the B12 you would dissolve under your tongue eventually gets swallowed so the uptake mechanism of the B12 in the terminal ileum is the same.
If one pays close attention to the studies they are not clear whether the participants are those with PA and IFaB or PCab or just B12def. This piece of information is critically missing so it's important to review the methods and participants selection in any study you read. One place to look for a valid study is the nutritional supplementation requirements of those who have undergone a total gastrectomy. These studies clearly include a study pool with zero IF and zero gastric acid (achlorhydria) so they have all the same micronutrient absorption issues that one with an advanced state of AIG/PA will have.
This is a smattering of my research and conclusions I have made from that. Consider this my educated opinion and nothing more.
Hope this helps the discussion some.
Rexz
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