Has anyone tried a Methylcobalamin patch - Pernicious Anaemi...

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Has anyone tried a Methylcobalamin patch

star-me-kitten profile image
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Has anyone tried a Methylcobalamin patch? Wondering if it's any good. I am battling with my Doc to get my jab every 10 weeks instead of 12, I just can't cope with the 12 week and the symptoms are getting worse every time.

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Sleepybunny profile image
Sleepybunny

Hi,

Personally I found patches of little use. I sometimes use sublinguals (under the tongue) lozenges. I find injections have the best effect.

Are you in UK?

In UK, people with B12 deficiency with neurological symptoms eg tingling, tinnitus, tremors, memory problems, pins and needles plus others are supposed to have the following pattern of treatment....

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

In UK, people with b12 deficiency without neuro symptoms get 6 B12 loading jabs over 2 weeks then a jab every 3 months.

B12 treatment can vary from country to country. If you're not in UK, I suggest trying to find out if there are national or regional guidelines for treating B12 deficiency.

What symptoms do you have?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

UK B12 treatment can be found in these next links.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

If you have a PA diagnosis or suspect you may have PA, it's worth thinking about joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

More B12 info in pinned posts on this forum.

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

I am not medically trained.

fbirder profile image
fbirder

Yes. They did nothing at all.

Which is no surprise. Human skin is designed to keep strange molecules out. This is especially effective at molecules that are large and hydrophilic (water-loving). But the B12 molecule is so large and so hydrophilic that it can’t even be absorbed through surfaces that are designed to let molecules pass through - like the gut.

Most drugs that are administered in patches are either small, or they rely on additional help like dermabrasion (sandpaper).

Ashweb901 profile image
Ashweb901 in reply to fbirder

That may e plain why my transdermal “neuroimmune” cream isn’t really working and my levels are falling by about 200 per quarter. I was up at 900 and even over 1000 with sublingual, then it was 700 and now 500. That’s been in just six months.

I ordered some injectables. I used to do self-injection but found I wasn’t terribly compliant. Guess I’ll pick it up again bc while I have tested negative on a schilling urine test 20 years ago, and my one-time MMA test in 2016 was in normal range, my homocysteine was highish 20 years ago and my RBCs are macrocytic and too few. White cells decided they want attention too so the neutrophils are now just below the low mark of normal. My hemoglobin is fine bc I take iron. Platelets has been low but now are normal. Folate is in normal range. MCV and MCH are always just above the top of normal. Upper GI tests show no celiac. It did show gastritis with mild atrophy tho..... so until a USA doctor gets more interested, I’m a mystery!

Sleepybunny profile image
Sleepybunny in reply to Ashweb901

Hi,

"Upper GI tests show no celiac .....I’m a mystery! "

Coeliac disease can present purely with neurological symptoms and no gut symptoms.

coeliac.org.uk/coeliac-dise...

Have you had tests for H pylori infection?

patient.info/digestive-heal...

Any chance of internal parasites eg fish tapeworm or Giardia Lamblia or others?

Fish tapeworm infection can lead to severe B12 deficiency.

One potential sign of fish tapeworm infection is an increase in numbers of eosinophils, a type of white blood cell. Eosinophil result can be found on results for Full Blood Count (Complete Blood Count in US).

"Folate is in normal range"

Is it well within normal range?

"My hemoglobin is fine bc I take iron"

Have you ever had other iron tests?

labtestsonline.org/tests/ir...

Ashweb901 profile image
Ashweb901 in reply to Sleepybunny

Thank you, Sleepybunny! Tested negative for hpylori at colonoscopy time. Eosinophils spiked in August last year but went back down. I think that was due to silicone breast tissue expanders, which I since had removed and opted to be flat.

I have not had other iron tests except serum ferritin, which is around 40-50 after being very low once when i trained for a half marathon.

A “peripheral smear” was done last fall and showed none of whatever the hematologist ran it for.

Lemme check on that folate.....It was serum folate, I do know that.

Ashweb901 profile image
Ashweb901 in reply to Sleepybunny

Do colonoscopies show tapeworms? Lol.

wedgewood profile image
wedgewood

I have PA , and when my pleas for extra B12 injections fell on totally deaf ears ( I had one every 3months) , I tried patches , sub-lingual lozenges and nose and mouth sprays . I’m afraid that they did not help me one iota . And they were expensive . For me , injections were the only help , so I was forced to self-inject . That said , I hear that some people are helped with the above mentioned supplements . So you could try . If no help, come back here and find out what to do to self-inject . It’s cheap and it really works .

Ajane profile image
Ajane

I am one of the few people that did benefit from these patches before I began to self inject. However, I kept one on continually rather than following the dosage on the pack. I alternated which ear I put them behind each day! Not as effective as an injection (& horribly expensive!), but it did help.All the best 😊

clarinet2 profile image
clarinet2

I am finding vie patches 5000 really helpful. I have been applying them every other day for almost 2 weeks and my dreadful stinging nettle- like tingling, nervousness, pounding heart, sleeplessness, dreadful anxiety, are already lessening. I have been unable to do anything much other than rest for 3 months and the last few days I’ve been able to go out and get my hair cut, walk around the park and visit a friend - after barely going further than my front door. I don’t know if I had low levels of b12 or not, but these patches are having a very positive affect on me.

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