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Skin patches, sublingual sprays etc. Do they work?

Laundretta profile image
28 Replies

Hi

I tested negative for intrinsic factor antibodies and my b12 is quite low (see profile for numbers), but I am Hashi's and not got the treatment for that quite right yet. I have some b12 deficient symptoms (possibly, could be the Hashi's perhaps). As more b12 won't do me any harm, and working on the assumption that I'm not absorbing well enough, what can members recommend that works but doesn't involve self injecting. If self injecting, where do you get the needles from?

Thanks in advance

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Gambit62 profile image
Gambit62Administrator

single serum B12 level like the one you have is pretty difficult to interpret - partly because of the accuracy of the test - but also because people vary so much so for some people that level will actually be perfectly okay and what they need. If you have earlier results that showed a much higher level - over 20% higher, or a series with dropping B12 levels - then that would be good evidence of an absorption problem.

sublinguals, high dose oral, nasal sprays and skin patches are all options that work for some people but they don't work for everyone with absorption problems. At the moment the only way to know if they work for you or not is to try them and see.

Laundretta profile image
Laundretta in reply to Gambit62

Hi! Thanks for the reply. I've never previously been tested for b12, so don't have a history to go on. I actually had the active b12 test done first, which is possibly more revealing. It came back at 34. However, my GP is only interested in the serum result. Honestly, I'm fed up with going to the GP and getting a brick wall. It's just too much for the GP to tackle the two concurrent issues, especially when he seems to think I'm physically fine and it's all only in my mind. So my current plan is to try to prop up the b12 with a variety of self-medicating means while I get the thyroid levels right. With a spot of luck my ability to absorb b12 will improve at this point and I'll be able to maintain b12 with a decent b complex supplement.

Gambit62 profile image
Gambit62Administrator in reply to Laundretta

sympathise with GP issues.

waveylines profile image
waveylines

Hi Laundretta,

Is your GP going to increase your thyroid meds as theres definate room for improvement as you are quite low in range on your thyroid levels? Its common for this to cause your b12 to drop & yours is low.

You could try no shots b12 sublinguals which you can get in different strengths. Theres a spray for under your tongue called Better than B12 that Holland & Barrret stock. You might find you need both. The vitamin bs work together so if your going down this route you should also take a b complex with folate. A daily banana with it potassium will help to keep levels good as high doses of b12 can cause it to drop. Am no expert but these are the things that I have been told by those in the know!!

The bottom line is though is that you need to aim to get your thyroid hormones in the top third of the range, some need them to be near the top.

Foggyme profile image
FoggymeAdministrator in reply to waveylines

Hi waveylines. Just to add....from the perspective of PA / B12 deficiency (though thyroid forum may give different advice in relation to the thyroid)...

1) better to take a multi-vitamin and mineral tablet (which contains all the B vitamins) rather than B complex. Gives better 'spread' of vitamins and minerals and some B complex products contain very high doses of vitamin B6 - over supplementing with B6 can cause neurolgical symptoms and potentially irreversible neurogical damage. Folic acid is usually included in multi-vitamins (various doses in different products) If needed for maintenance dose, the usual amount is 400mcg daily - though not every body needs it.

The bottom line with supplements is that we're all different and everyone has different requirements: some need none, some need small 'maintenance' doses and some need super high doses of various things in order to function (those people usually work this out over time by monitoring symptoms, being aware of symptoms of over-supplementation and via blood tests to ensure that toxicity does not occur. Also worth noting that over-supplementing with some vitamins and minerals can be danverous to,long-term health. So hmm...tricky 😉.

2) treatment with vitamin B12 only causes potassium levels to drop in the initial stages of treatment (the first few days) and then only when macrocytic anaemia is present (the burst of activity repairing macrocytic blood cells uses up potassium). Injecting B12 frequently in itself, on an ongoing basis, does not cause a bigger need for potassium - though potassium may be low (or lowered) if there is another reason (i.e. low dietary intake, absorption issues, medications that reduce potassium, taking diuretics, acute diahorrea and vomiting etc). So, some may need to increase dietary intake of potsssium, or have low levels treated by a GP...but this will not because of frequent ongoing B12 injections.

Laundretta , I note that your potassium results previously reported on the thyroid forum were below the bottom of reference range...hope GP is giving advice / treating (if necessary) and also re-testing to ensue that levels have risen?

👍

waveylines profile image
waveylines in reply to Foggyme

Thanks Foggyme. 😊😊 I dont have your expertise so aways helpful to receive feedback & advice. Thank you

Interesting what you said re the B Complex with folate as I was advised to take it from two other knowledgeable people. Re the multi vit It does make sense as I can well imagine that one could be deplete in other vitamins & minerals. However as a cancer survivor I wouldn't be keen to take a multi vitamin due to longterm use being linked with cancer. Maybe thats rather silly of me as I am taking b complex!!

I am also one of those people who presented with neurological symptoms first before the anemia so am hoping I dont have the same need. Maybe Im wrong on that score?

Re my potassium level am not aware of being tested for this & cannot find it on the blood test results I posted. Can you let me know....maybe its called something else? If so I can talk to my GP as I have an appointment with her in a couple of weeks.

I also agree with you that I was talking from a thyroid angle & it may well be that its different in the PA world. Am certainly not an expert on PA at all. Things must get more complex when you have more than one condition like I have & am guessing then there has to be a merging so both conditions are complimented?

I absolutely agree that we are all different & what suits one may not suit another. I should've said that in my reply. My apologies Laundretta. Im on a learning curve too! 😁☹️😉😊

Foggyme profile image
FoggymeAdministrator in reply to waveylines

Hi waveylines. Yes, vitamin and mineral supplements are tricky to get right and with your history, I can understand why you might not want to take a multi-vitamin and mineral. It's always difficult to get the balance between enough and too much.

About the B complex and folate...knowledgable people may have advised you to take these. However, I'm always conscious that it's really difficult advising on supplements because everyone's different and there's no ideal one-size-fits-all requirement or dose regime....and complex medical histories and details of medications need to taken into account too. For instance, I regularly see that people who take vitamin D are 'advised' to also take vitamin K2...but never see this qualified with rider that those with clotting problems, stents, a history of embolism, or who take certain medication (anti-coagulants, for one) should most certainly not take K2. Dangerous.

In terms of the B vitamins, too much B6 can be neurotoxic, so I'd take that with caution unless you know what your B6 levels are (and not many people do). Even doses of B6 within the recommended RDA, on an ongoing basis, can be too much for those who do not need it. We also hear tales of people taking a multi-vitamin (which contains B6) and a B complex too - so they are unwittingly double dosing on B6 (though not suggesting that you're doing that). So...it's difficult...and not simply a matter of advising everyone to take the same supplement regime.

A good way to go would be to ask your GP to do a vitamin and mineral screen. Not many offer this as routine but with your history (and a good GP) they might be willing to do so. Or you could get a private test. It's the only way to know for sure if you actually need what you're taking. And like you, I'd be keen to only take what was actually required.

With neurological symptoms, the main thing is to get enough B12 (every other day injections until no further improvement) but the presence of neuro symptoms don't give any indication as to requirements for any particular additional supplements. Oh if it were that easy 😉.

Those with absorption problems often suffer from other deficiencies too, the main ones being folate, iron and vitamin D. It would be usual for a GP to test ferritin (one marker of iron deficiency anaemia), folate and vitamin D levels - though not many do. If your GP won't do a full vitamin and mineral screen, they should at least be able to do these, so I would ask for these to be done.

And yes, it is difficult when having to consider co-existing conditions...and I can't speak to thyroid issues...though I suspect it's illogical to assume that everybody needs the same level of supplements just because they have a specific medical condition...or conditions. So here we are...back to 'it's tricky' 🤔🙄😉😀.

About the low potassium...that was for Laundretta. I accidentally inserted the wrong tag so thanks for spotting. I'll change the tag so that Laundretta sees the comment. Sorry for any confusion.

Good luck with everything and post again if you need more help.

👍

topher2018 profile image
topher2018 in reply to Foggyme

Hi Foggyme

I have a history of blood clots and pulmonary embolism and am on anti-clot medication. I also take vitamin k2 so read the part of your post on that with interest. I know that k1 promotes clotting but have read one paper on k2 and clotting in rabbits that concluded that hypercoagulability was reduced with doses of k2. Interested in your sources for k2 being dangerous for people like me. Thanks!

Foggyme profile image
FoggymeAdministrator in reply to topher2018

Topher2018.

I am using the term dangerous in the sense that giving blanket advice for all who take vitamin D to also take vitamin K2 (or any form of vitamin K) should also include the rider that it should not be taken by those who also take anti-coagulants (or have a history of blood clots, have stents in pace etc). So yes, that advice is dangerous without the rider about contraindications. As is taking K vitamins under these circumstances.

First, information from my local pharmacist - first 'go-to' before I take anything - who first flagged up the contraindication (as above).

Hypercoagulation reduced in K2. Is it? Reduced by how much? (In rats?) Totally eliminated - don't think so. Hence the safety warning for those with pre-existing clotting conditions:

Relevant information about this in Contents - points 12 and thirteen (safety and hazards and toxicity, respectively (note: K2's chemical name is Menaquinone), in the link below:

pubchem.ncbi.nlm.nih.gov/co...

Have other references but no time to post all...pubchem a reliable source re: contraindications and hazards etc. 😉

Vitamin K is known as the clotting vitamin and works like a coagulation drug, through process of vasoconstriction, platelet plug formation and coagulation - though which 'K' is responsible for which function and can the functions be isolated or split off into different 'K's - no idea, but suspect not.

More information available via internet search, google scholar etc., if you want to research further.

Taking any form of vitamin K is contraindicated when taking anti-coagulants (the two cancel each other out).

Would I take vitamin K2 (or any K vitamin) if I was taking anticoagulants - no. Not unless under direct medical supervision. Sorry if that's not what you want to hear.

Suggest you discuss this with your GP, if you haven't already done so.

Good luck. Be interested to hear how you get on 👍

Polaris profile image
Polaris in reply to topher2018

Hi Topher - I'd recommend the book, "Vitamin K2 and the Calcium Paradox - How a Little Known Vitamin Could Save your Life" , by Kate Rheaume-Bleue.

In it, she explains the separate roles of vitamin K1 and sister molecule, K2 - that most people have sufficient K1, which is the one mainly involved with blood coagulation, but almost all of us are deficient in K2 so, if you are supplementing D3, this is why it is needed to ensure D3 goes to the bones and not arteries.

Importantly, the book also explains that most of us are deficient in K2 since factory farming and the removal of livestock from pasture became the norm.

PS Apparently, eating processed foods with transfats also increases the risk of K2 deficiency.

waveylines profile image
waveylines in reply to Polaris

Hey Polaris....does the book say about dosage of d3. I understood that you only need the K2 for larger doses of d3 but not for the maintenance doses. I cant quantify this as am not sure where I got that idea from.....lol

Polaris profile image
Polaris in reply to waveylines

Having also read Jeff Bowles book about the miraculous effect of high doses of D3 with K2, you may be right wavylines but I don't know.

But, as we're probably all deficient in K2, personally, I'd be inclined to take a small dose with even small amounts of extra vitamin D3. I take 5000 iu D3 combined with 100mcg K2 MK-7 when needed.

Interestingly, K2 is in fermented foods, e.g. Sauerkraut, and very high in Natto - a gooey fermented substance from Japan, although this would probably be very difficult to source or acquire a taste for 😀

waveylines profile image
waveylines in reply to Foggyme

Thanks....my GP did a blood screen and ferritin, iron and magnesium were well in range as was my red blood count.

Sounds like it might be best to visit a nutrionlist or take a qualification in it....Haha! 😊😊. GPs are useless at this type of stuff! Lol...

Laundretta profile image
Laundretta in reply to waveylines

No apology needed! x

Laundretta profile image
Laundretta in reply to Foggyme

Hi Foggyme I think (?) my potassium is ok at present 4.1 (3.5-5.3) last tested in July. I have another question though about testing when supplementing. I understand that the total b12 test can be even less indicative of true b12 status once any sort of supplementation is undertaken. Is the active b12 test similar or will it accurately reflect b12 status?

I ask because once I have thyroid meds under control, I plan to continue using the thorne basic B complex, which has the full spectrum of B vits including 400mcg B12 (methylcobalmin). I will want to test whether I am absorbing successfully or not, and would like to monitor levels before I get symptoms. (Hope this makes some sense)

Thanks x

Foggyme profile image
FoggymeAdministrator in reply to Laundretta

Hi Laundretta. Good news about the potsssium levels 😊.

About the rest...testing either serum B12 levels or active B12 levels is meaningless once supplements have been started and won't tell you anything about whether B12 is being used effectively at a cell level. And neither test is of any use in assessing the efficacy of treatment once supplements have been started. So, monitoring B12 levels is meaningless.

Here's some information about monitoring B12 levels during treatment:

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

The only way to assess the efficacy of B12 treatment is by looking at symptoms...and this might be difficult in your case because of the potential overlap between hypothyroid and B12 deficiency symptoms.

It’s worth noting that if you have neurogical symptoms due to B12 deficiency, then the recommended treatment in the UK is B12 injections. However, given your previous serum and active B12 levels (which did not show a deficiency) and the fact that these will likely have risen due to the oral supplements you've been taking, it will likely be very difficult to get a GP to consider B12 deficiency as a potential cause (even if it is).

If you do go ahead with testing your B12 levels and these have risen since last time, it's likely that you do not have an absorption problem. When absorption problems are present it usually takes high doses of oral B12 - 1000 - 5000mcg daily - to raise B12 levels, so if yours have raised with just 400mcg, then it's unlikely that absorption problems are an issue. And this makes it more unlikely that B12 deficiency is the cause of your symptoms. That is, of course, unless you've previously been diagnosed with B12 deficency or had B12 results at the bottom of the reference range prior to taking B12 supplements.

Having said that, the real issue is that there is no gold standard test for diagnosing B12 deficiency somthe whole clinical,picture should be taken into consideration (symptoms, other medical conditions etc.)...which brings us back to where we started...the difficulty of distinguishing between the symptoms of B12 deficiency and hypothyroidism.

In short...the only way to tell for sure if B12 deficiency is responsible for symptoms is to treat for B12 deficiency...with injections (vital if neurogical symptoms are present)...and if the symptoms are relieved, the hey presto...B12 deficiency is the answer.

Though persuading a GP to do this is no easy matter when B12 levels are within 'normal' limits, since many do not realise how unrealiable current testing methods are.

If you read the third and fourth PAS pinned posts to the right of this page (or at the bottom ifmusing a phone, there are links to more information about B12 deficiency (Diagnosis, testing, treatment etc.) that might help.

So hmm...sorry there are no easy answers here.

Good luck and post again if you need more help 👍

Laundretta profile image
Laundretta in reply to Foggyme

Thanks so much Foggyme you've been a great help and you're very patient! More questions!

1. I'm confused about the effect of supplements on blood tests. Clearly, if the b12 is being successfully absorbed either from a patch/spray/tablet then this will be reflected in the bloods. If there is a problem with absorption, will the supplements still skew the tests?

2. Using a weekly 5000mcg methylcobalmin skin patch and taking 400mcg daily in a b vit combo pill, how long might I expect it to take for symptoms to improve if its absorbing (I know it'll be different for everyone, but I mean an indication in terms of days/weeks/months)

3. If symptoms don't abate because I'm not absorbing, how long before testing should I stop taking/using supplements to be able to see the real picture in the bloods?

4. Are the MMA and homocysteine tests (which are a reflection of what's happening at a cellular level, I believe) affected by supplements (clearly if the supplements are being absorbed and doing their job they will, but I mean if you're taking the supplement but it's not being absorbed. Back to Q1, I am definitely confused!)

Thanks so much x

Foggyme profile image
FoggymeAdministrator in reply to Laundretta

Hi Laundretta. Sorry if this sounds a little 'stillted' but short of time, so briefly...

1. Yes, tests always have the potential to have skewed results once supplements have been taken. The problem with taking an oral supplement (in particular) is that it might give just enough B12 to stop B12 levels dropping to 'deficient' status (what an ill-informed GP looks for), but not provide enough B12 for appropriate repair to take place. All supplements end up in the blood, and it's blood levels that are looked at in serum B12 and active B12 blood tests. However, if B12 levels continue to drop or don't rise whilst on oral supplements, this is indicative of an absorption problem, because oral supplements eventually get to the blood via the stomach (unlike injections which bypass the gastric route, so injections are a bit different - they always rise B12 levels).

2. Just not possible to give an indication on time taken for symptoms to abate, especially where oral supplements are concerned. Complicated in your case because supplements taken before diagnosis of B12 deficiency and added fact that hypothyroid symptoms are the same as those of B12 deficiency.

3. You would need to stop supplements for up to six months (longer for some people) and then monitor for a consistent pattern of falling B12 levels.

4. Yes, MMA levels are affected by B12 supplements - they fall quite quickly following supplementation...assuming that everything is working as it should at a cell level. It's possible to have very high levels of B12 and have a raised MMA, indicating the presence of functional B12 deficiency. So...following supplements, if you did have an MMA test now and MMA was not raised, this would indicate that B12 is being processed properly at cell level. If MMA was raised now, this would be indicative of problems at a cell level - functional B12 deficiency (more to do with errors of metabolism than absorption issues - since it's possible for B12 to be absorbed into the blood then not processed properly at a cell level - so errors of metabolism and absorption issues are two different potential causes of B12 deficiency.

Raised homocysteine levels are more to do folate deficiency (but have other causes too).

Have a read of the PAS pinned posts - information there will help you to better understand this 'stuff' - there's also information there about problems with oral supplements, serum B12 levels following treatment, MMA testing etc.

Sorry if the above's not to clear...have to rush to get it done and posted 😉😀.

Good luck

Laundretta profile image
Laundretta in reply to Foggyme

Thanks again you've really helped me get my head around the best thing to do. :-) I've only been taking the supplements for 2 days! So all test results to date are pre-sups. I started them following getting the negative antibody test and in-range serum total b12 result back and knowing that the GP is unlikely to investigate further at this point. I got the (private) active b12 test done just over a month ago. It just happened to be part of a package of tests I had run for the thyroid and b12 wasn't even on my radar at that point. I'd have thought my b12 levels would be hunky-dory due to adequate dietary sources. I had to wait a month for the GP appointment hence the interval. I'm hopeful that the low b12 is due to Hashi's and absorption will improve if I can get that bit right, and also some medium dose supplementation (without injecting) could well bring up active b12 levels if it's not PA. It'll be interesting to see if symptoms abate a bit over the next month - no chance of increasing levo before then as I have to wait to see the endo in October, so at least I'll know which change has been effective! I wanted to be mindful of the ramifications of supplementing should it turn out that I'm actually on the slidy-slope to serious b12 deficiency due to PA, and making it harder to sort it out at a later date. I did consider getting a private MMA test done, however hashi's itself can raise MMA levels and it's also quite expensive. Thanks again x

Foggyme profile image
FoggymeAdministrator in reply to Laundretta

If they were pre-supplement levels, not too bad...might just be your individual 'normal'...or perhaps a low personal 'normal' because of,your thyroid issues. But unfortunately, B12 levels are a notoriously dodgy way to diagnose B12 deficiency...so who knows...time will tell...as you know 😉.

Be interesting to see what happens when thyroid issues are under better control. Just frustrating that everything takes so long (and the endless waiting for appointments is a nightmare).

Think you're right about the MMA test...perhaps return to it at a later date, if necessary.

Very best of luck and put up a new post if you need more help 👍

Laundretta profile image
Laundretta in reply to waveylines

Hi! Thanks for the reply. Let's just say that the thyroid meds are 'a work in progress'. My GP however, seems to think his work is complete. I have my first endo appointment coming up so I am hopeful that this will be a positive meeting and he'll tell my GP what to do. Its very frustrating having months of waiting and feeling rubbish, just to get a little bit more levo! I'm hoping if I get the thyroid meds right that b12 absorption will be better. The GP says he thinks my b12 is fine and he's therefore not going to consider injections at this time. I have to be really ill apparently, before that's an option lol.

So the choice is wait to see if it drops further or just address it myself. It's going to be easier to sort the thyroid meds if the b12 is right, so I'm planning to prop up the b12 for now (hence the original question) and once the thyroid meds are right, revisit the b12 absorption if it's still an issue. I've got some super-dose skin patches for b12 and I've started taking the thorne basic B complex.

waveylines profile image
waveylines in reply to Laundretta

Hi Laundretta -is the Endo you are seeing thyroid friendly/knowledgeable? Many specialise in diabetes, not thyroid so know very little about it. Hate to be negative but I would check out their skills. You can choose who you see but some hospitals insist that that they allocate the consultant.

Laundretta profile image
Laundretta in reply to waveylines

Hi Wavylines. Yes, thanks for the heads up though. I had done my research before going into the GP, so gave him a choice of 2 I would be satisfied with. I got a copy of the letter the GP wrote (I'm so cynical now that I wanted to check what had been written about me!) It was funny because the GP actually stated in the letter that I had said this endo was 'one of only 2 I would be happy receiving advice from" haha. I reckon I've got a red flag against my name very time I pop into the system. I just hope I actually get in front of this particular endo or at least one of his stooges in clinic. Fingers crossed.

waveylines profile image
waveylines in reply to Laundretta

Oh am so glad you researched first. What I did on arrival was to make sure reception and nurse was aware who Id come to see. I politely pointed out I travelled a fair way specifically to see them. That seemed to nudge them on!!

Ive discovered over the years to be a bit more pushy.....they might not like it but they do respect it. 😊😊 Good luck.....hope yours gets your thyroid sorted for you.

Laundretta profile image
Laundretta in reply to waveylines

Ooh that's a great idea, thank you :-)

fbirder profile image
fbirder

To get absorbed across mucous membranes (like the mouth and nose) a molecule have to be small and hydrophobic (not water soluble). B12 is both large and hydrophilic.

I’m sure that’s why sublingual sprays and lozenges do nothing at all for me.

Skin is even better at keeping unwanted stuff from getting into the body. And B12 patches also did nothing.

I was thanking about this over the last few days. And came up with this quandary:

We know that B12 is produced by bacteria in the large intestine. That B12 cannot be absorbed normally as it’s past the ileum. But if the B12 molecule can be easily absorbed through mucous membranes why can’t it be absorbed across the membrane of the lower intestine? There’s plenty of B12 there and it’s in contact with the membranes for a long time. So why do we need to consume B12? Why can’t we absorb the stuff our bacteria make, just like cows do?

Sleepybunny profile image
Sleepybunny

Hi,

Some info below may be UK specific.

"I tested negative for intrinsic factor antibodies "

Hope your GP is aware that it is possible to have a negative result in Intrinsic factor antibody test and still have PA. This is called Antibody Negative Pernicious Anaemia. Antibody Negative PA is recognised in UK but not sure if recognised in other countries. See BSH guidelines link below for more info. If you're in UK, I suggest reading all the following documents.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Some UK GPs may not be aware of above document.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Outlines when PA and Antibody Negative PA can be diagnosed in UK.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat people who are symptomatic for B12 deficiency even if b12 levels are within range.

BNF

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

NICE CKS

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

Link about "What to Do Next" if B12 deficiency suspected.

b12deficiency.info/what-to-...

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member to use this)

What does GP think is causing your low B12?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Diet

Has diet been excluded as a cause?

Medication

Some drugs/medicines can affect B12 levels in body. Some can affect folate levels. See Risk Factors links.

Coeliac disease

NICE guidelines Coeliac Disease (2015 version) is a UK document that recommends people with unexplained B12, folate or ferritin deficiencies should be tested for Coeliac disease.

nice.org.uk/guidance/ng20/c...

H pylori infection

patient.info/health/dyspeps...

Nitrous Oxide

gov.uk/drug-safety-update/n...

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. There is also a paediatric version of this book aimed at parents.

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (USA website)

b12awareness.org/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Blood test info

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

MMA article (English Language article from Dutch B12 website)

stichtingb12tekort.nl/weten...

Other interesting English language B12 articles on same website.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

I am not medically trained.

Good luck

Laundretta profile image
Laundretta in reply to Sleepybunny

Wow! So much to read! (And I will) thanks for such a comprehensive reply!

I am quite sure that my GP hasn’t got a clue! I wrote to him yesterday saying that I haven’t ruled out PA and why. It’s possible that when I get my thyroid disease adequately medicated that absorption issues may resolve. If they don’t and b12 levels start to drop or symptoms return I’ve said I’ll want PA and/absorption issues back on the table to address.

I’m just fed up with going to the GP only to hit a brick wall, and I reasoned I might be able to address the b12 symptoms myself, at least while the thyroid meds are a work in progress. One set of symptoms to evaluate at a time! I’ve been using high dose skin patches (2 so far) and a b complex to support for only just over a week and the difference is incredible. My symptoms weren’t severe and I’ve not had them very long. Thanks again

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Methylcobalamin 5000mcg patches - do they work?

I have 6-weekly injections but when my life is very stressful they don't seem to work. I have had...

Do the oral B12 sprays definitely work for patients with positive anti-body for intrinsic factor?

quick question to see if anyone has been using the B12 oral spray's and its resulted in absorption...

Warning: B12 skin patch is a scam

personally think B12 skin patch is a scam. When you look at 1mg B12 sublingual tab or 1ml B12...

B12 Sublingual / nasal sprays vs b12 injections

are saying that the b12 nasal spray and lozenges are as effective as the injections? Does anyone...