Could this be a side effect of low b12? - Pernicious Anaemi...

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Could this be a side effect of low b12?

cloverfiat profile image
22 Replies

I wonder if anyone can help identify my symptoms?

I have had these symptoms for 7 months now. It began with a very itchy and sore back of mouth and throat. It was so irritating, kept trying to use my tongue to itch the roof of my mouth and clear my throat. I have also had itchy inner ears. Especially the left hand side of my throat and ear. The back of my throat is inflamed and red and my tongue is slightly swollen. At times, I have not been able to sleep or work and have been in tears with this unbearable sensation.

I was initially given treatment for oral thrush, the swabs came back negative and treatment did not work. I then was treated for a throat infection, again a weeks worth of antibiotics did nothing. I was given steroid nasal spray and antihistamines. This has helped slightly and eased symptoms and made it manageable. However, still unhappy that the Dr hadn’t found the cause of this, I asked for him to look into it further.

I had bloods taken and it came back that I have a B12 deficiency. I was given 6 booster injections of B12 over 3 weeks to quickly top me up. I am aware that a b12 and iron deficiency can cause oral irritations, however I feel my symptoms are not entirely fitting with these. Also, the symptoms have not improved since having the B12 booster injections. The bloods also came back to say I have had glandular fever at some point in the past, but not sure when. Not sure if this is relevant?

I was referred this week to the ENT Allergy clinic where I had a skin prick test and came back with no allergic reactions. The ENT specialist looked in my mouth and said that it looks imflammed but he cannot pin point the cause of this. He has prescribed gaviscon advance to see if that works, and told me to stop all other medication. He said about acid or silent reflux. I wonder if anyone else has similar symptoms as mine and can help me pinpoint what’s causing it?

I have had gaviscon advance for 3 days now and has helped a little but still feeling irritated and especially itchy back of throat, left ear. It stings my throat a bit when I take it, is this normal? How long should I take it for? Can anyone please shed light on this?

Do you think this has anything to do with my B12 being low??

I would be so grateful of any ideas/advice/personal experiences people may of had because I feel it is taking over my life. Thank you!

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22 Replies
Nackapan profile image
Nackapan

I did reply. Seems to have gone on another forum?? Too tired to repeat. Hooe tiu find it.

Deniseelk profile image
Deniseelk

I have no personal experience of these symptoms but I wonder if you should be referred to a Rheumatologist to investigate the cause of the inflammation. I would push your GP for a referral. Best of luck.

JanD236 profile image
JanD236

These are exactly my symptoms when I’m having an allergic reaction, although I will often also have itchy eyes and start sneezing. Usually it’s an allergic reaction to something like pollen, animals or dust. Antihistamines help reduce the symptoms but don’t completely alleviate them and it sounds like you’ve had a similar experience.

I also have an oral allergy with hazelnuts. If I eat something that’s been next to a hazelnut my tongue and throat have a ‘peppery’ feeling. (Obviously I avoid eating hazelnuts themselves).

I might be wrong here but I vaguely remember an allergy specialist telling me that skin tests are of limited use as they only tell you whether or not your skin is allergic to the allergen.

I once had anaphylaxis after eating a peach of all things and I think the tests carried out on me after that were blood tests and not skin tests.

cloverfiat profile image
cloverfiat in reply toJanD236

Thanks for replying to me, that’s really helpful! What do you use to treat your symptoms?

JanD236 profile image
JanD236 in reply tocloverfiat

Antihistamines, tablets and eye drops.

Annkapp profile image
Annkapp

I had the same kind of symptoms with intense itching in the inner ears and sore, itchy throat. Some times the roof of mouth too and like you it was mostly the left side of my mouth/ throat. So I was on antihistamine, eye drops, steroidal nasal spray and steroidal ear drops. I even went through a course of allergy shots for environmental allergens. These things helped but the problem was still there.

Long story short these are some things that helped get to the root of the problem.

Diagnosed with some food allergies and food sensitivities so cut them out. This helped but also began HCL and pepsin for protein digestion. (I also had to do ox bile and Lypase for fat digestion and also general enzymes for carbs but I would just start with the HCL and pepsin for you since you mentioned the acid reflux. You need enough stomach acids in order to signal the flap to the esophagus to close.)

Allergy symptoms (itching, throat soreness) can be a sign of weak adrenals so try supporting them. Adrenal cocktail mixture of sea salt (not common table salt) and potassium (cream of tartar) and vitamin c powder helps nourish the adrenals as well as lots of b5 and some b6.

In addition lots of good sleep and reducing any stress helps. (Which includes stress from food I mentioned earlier and any mental or other physical stressers).

You don’t mention your age but if you are low in progesterone you can have allergy type symptoms. Like the adrenals progesterone also helps with inflammation so helps reduce itching, post nasal drip, etc. If you are still cycling you may find that a certain time of your monthly cycle your symptoms get better or worse. If you are peri menopausal or already gone through menopause you may need a natural compounded progesterone to get relief of your symptoms.

Those are the three areas I would suggest looking into as they have all helped me overcome what you described.

Annkapp profile image
Annkapp

And folate or methylfolates (not folic acid)

helps to reduce any kind of inflammation as well. If you are already taking folate you may want to try increasing the dosage for awhile. Note that folate should be combined with B12.

fbirder profile image
fbirder in reply toAnnkapp

For the vast majority of the population folic acid is just as good as methylfolate and is one-tenth the price.

Annkapp profile image
Annkapp

If you can’t afford food allergy and food sensitivity testing I would suggest trying cutting out the most common inflammatory foods. At the top of the list would be dairy. Other high inflammatory foods are gluten, vegetable oils, corn, soy, sugar and any inflammatory food additives such as carrageenan.

You could also try eliminating the most common food allergens. Again dairy but also egg and nuts (especially peanut).

One more category. High Histamine and Histamine producing foods. You can search the internet for a list which includes foods that are aged, cured, smoked and fermented.

bookish profile image
bookish in reply toAnnkapp

Just wondered if you have a B12 issue and if so which one you have found that you can take (as you seem to be treating and thinking along the same sort of lines as me) Many thanks

Annkapp profile image
Annkapp in reply tobookish

I have not been diagnosed with a B12 issue but that is not to say I don’t have one. When I first began supplementing with B12 I was very sensitive. I could only do a very small amount. Now I have high B12 but I am wondering if it is getting into the cells or just floating around in the blood. The B12 I used was a topical cream with methylcobalamin called methylation pro by neurobiologix.

Now I take mostly methylcobalamin in a b complex capsule I take by pure encapsulations.

bookish profile image
bookish in reply toAnnkapp

Thank you for all your helpful information. I started very low too as very sensitive and fairly sure that it is not getting into cells (not well enough, anyway). I am only hetero for MTHFR but homozygous COMT and a few others to affect B12 and methylation. Pure Encapsulations are good, I use their Vit E. Currently on Metabolics and Lamberts Methylcobalamin and Metabolics Methyltetrahydrofolate and was hoping to find a non-methyl B12 to add.

How much is 'lots of B5' - I wonder if I'm not taking enough, as I started very low with that too. I use quercetin and magnesium to help my histamine issues. When I started having problems I was advised to increase my adrenal support but as the one that had seemed to be helping (and tolerated) is whole gland not cortex I have started to lower the dose since I found out about the COMT. I can't tolerate progesterone any more so am concentrating on getting the oestrogen down (and out) now I know I'm not doing that well at all. Best wishes

Annkapp profile image
Annkapp in reply tobookish

There is also hydroxocobalamin and adenosylcobalamin which you probably would not react to though I'm not sure if those forms of B12 do the exact same thing as methycobalamin. Pure encapsulations makes a 50/50 formula of those two called Adenosyl/ Hydoxy B12.

According to the label, "Adenosyl/Hydroxy B12 is a vitamin B12 blend formulated for nerve and mitochondrial support. Adenosyl/Hydroxy B12 helps support carbohydrate metabolism for the enzyme methylmalonyl-CoA as well as the synthesis of neuronal myelin".

Jarrow makes a B5 capsule with 500 mg or 250 mg may be enough (I split them) depending on your status. Remember B5 should be taken with B6 and vitamin C. If your adrenals really need support (i.e. really fatigued) I suggest a product by Nu Medica called Corti-B Plex which contains 75 mg vitamin C, 85 mg B6, folate, 750 mg B5, Acetyl L-carnatine and bioflavinoids.

BTW I am hetero for the MTHFR gene and also COMT.

bookish profile image
bookish in reply toAnnkapp

That's great thank you, I shall try to find out a bit more about the Pure Encapsulations one. Something I listened to about COMT said that too much methyl might cause increased symptoms so I was interested to have an alternative rather than keep increasing the methyl. I'm using Allergy Research Group Pantothenic Acid but only 1/4 cap so 125mg. I'll try another 125mg and see how it goes. I'm using Vit C and get B6 from ARG Multi-Vi-Min. Interesting that you are also MTHFR and COMT. Thanks again and best wishes

fbirder profile image
fbirder in reply toAnnkapp

Being heterozygous for any MTHFR mutation is not going to do anything. Almost everybody in the world has at least one MTHFR mutation.

Methylcobalamin is no better than any other form of B12 and may be worse.

palmier profile image
palmier

Perhaps you should test your ferritin again. It happens that a b12 deficiency "masks" low iron stores, and when the body gets b12 from injections the ferritin levels drop.

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

"... we suggest that all patients diagnosed with cobalamin deficiency should be screened for iron deficiency, particularly after cobalamin therapy."

Cherylclaire profile image
CherylclaireForum Support

I am having help currently from an Oral Medicine consultant. This was a referral from Adult Inherited Metabolic Diseases consultant, because despite self injecting every other day, I still had B12 deficiency symptoms - and this one, while not being the worst, is particularly visible.

I don't have the same symptoms as you - I have something which seems more like "usual" B12 deficiency symptoms:

cyclical angular cheilitis (split corners of mouth) which can include splits and bleeding to upper and/or lower lip

large burning tongue- white-coated, dk red burning edges, sometimes pie-crust edge

dk red burning back of throat (often with swollen uvula)

I have had saliva gland infections in the past due to salivary duct strictures -requiring a procedure.

He is trying to see if cultures will grow: staphylococcus or candida in particular. This is the second time. Difficult because cyclical - you can never tell if the appointment will fall on a good/bad day. He wanted my ferritin level to be 80 ug/L (GP was aiming for 60+ as safety line for symptoms) although even at double-dose supplementing, I couldn't manage it (even went down very slightly!) - so ferritin level might be worth exploring, just as palmier suggested.

I like him, trust him and happy that he is determined to find both cause and cure.

Could this be the type of referral that you need ?

Annkapp profile image
Annkapp in reply toCherylclaire

I used to have a white coated tongue which was tied to poor digestion. Fats are hardest to digest followed by proteins. Try taking Lypase and possibly ox bile or bile salts for fat digestion. HCL and pepsin (stomach acids) for protein digestion. As I mentioned in my earlier response (above) sufficient stomach acid is needed in order to signal the flap to the esophagus to close keeping stomach contents from effecting the esophagus and mouth.

A comment about salivary glands. Did you know that ingredients in toothpaste such as sensodyne for sensitive teeth also block the salivary glands. It’s like putting putty in holes.

Cherylclaire profile image
CherylclaireForum Support in reply toAnnkapp

I drink fresh lime juice in sparkling water or fresh lemon and ginger in green tea for activating saliva glands and massage - wouldn't want to have the procedure for stretching out saliva duct strictures again !

This would also help with any insufficiency in stomach acid I'm guessing.

As for the cultures, he took some more yesterday - when mouth very sore ! - so hopefully will find something this time: he's thinking staphylococcus. Last one came back as "bacteria ++" but no one identifiable culprit such as candida. He kept photos I showed him, for the record, and seems determined to find answers . I really like him and think if there is anything to find, he will find it .

cloverfiat profile image
cloverfiat in reply toCherylclaire

Thank you for your reply! How did you get on with the latest tests?

Cherylclaire profile image
CherylclaireForum Support in reply tocloverfiat

Takes a while to grow cultures, cloverfiat -

so I'll let you know if/when I hear anything and won't be seeing him for about 2 or 3 months now, but in the meantime have been using nipple cream on sore mouth, one small squidge onto clean finger, in place of lip-salve which he said could be causing reinfection. Sounded sensible so giving it a go.

Then no more tests due now until Dexascan to check osteoporosis of the spine - and that's not till April I think.

Am trying to gain back what I lost lately by dropping the frequency of my injections from every other day to 2 a week (okay) to 1 per week (not great)- think I'm almost there now.

Got overconfident because of improvements, and needed to backtrack just a bit.

Annkapp profile image
Annkapp

Yes, sometimes I drink warm water with lemon juice to help with digestion but unfortunately I also need the actual stomach acid supplements.

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