Allergic to Hydroxocobalamin brand

[NicRee]

I received B12 injections at the beginning of July, my symptoms have got worse. I attended a Gastro Clinic today, the Doc thinks I may have had an allergic reaction to the B12 Brand I was injected with. Just wondering has anyone else experienced this?

[Allyson1]

What are the things you've experienced?

It is possible to have a severe allergy to the cobalt in cobalamin. As far as I know it is not the most common but it is certainly possible and can make supplementation really difficult. I always wonder If the old fashioned liver preparations caused allergies as well, and whether they would be an option for cobalt allergic people of they were still used.

It is also possible to have an allergy to the ingredients in a certain brand.

It's also possible to have side effects from B12 supplementation. These side effects may vary depending on dose, frequency, delivery method, and type of B12 (methyl-, hydroxo-, cyano-, or adenosylcobalamin). Some people tolerate one form but not another. This seems to vary widely and be highly individual. For some the side effects quickly resolve, for others they don't and they must change how they supplement. I've read lot of theories as to the cause of side effects but no real proof. Beware of pseudoscience at this point. Some think it's a kind of detox, others a sign of other deficiencies, or that it's feeding bad bacteria, others put it down to an overdose, other explanations involve methylation. I don't know of any definite answers or proof any way.

Hopefully your doctor could help you narrow it down, particularly with allergy testing.

I initially got worse with supplementation and can't quite pin down what happened, but I have theories,

[JanD236 in reply to Allyson1]

I haven't had worsening gastric symptoms after an injection but I would say that gastric issues (bloating, constipation, sore stomach) are my biggest symptom of PA after exhaustion.

I have seemingly random flare ups much of the time and the only way to let things settle down seems to be to eat little or nothing for a day.

[wedgewood in reply to JanD236]

I have had those gastric problems too. I now take a water-based probiotic called SYMPROVE, which has worked wonders for me.I went to a gastroenterologist, who after prescribing a useless tablet which didn't help at all,eventaully came clean and told me to assume that as a P.A. patient I have no or low stomach acid, for which there is no treatment. The lack of acid brings tummy prolems, as the food ferments rather than digests.The probiotics help the stomach flora. I'm not 100% better, but certainly 80%. I'm still researching the problem, as NHS has no anwers. Lack of stomach acid hinders absorption of vitamins and minerals, so supplement. Best wishes to you.

[NicRee in reply to wedgewood]

Wedgewood, thank you for your response. I attended gastro clinic, but do not have any stomach issues, as such. My GP wanted me to be seen to identify what caused my PA, unfortunately, he was unable to give me an answer. My symptoms seem to be related to an allergy, trying to figure out if its to my current B12 supplements or some other food allergy. I do believe that my diet is contributing to how I feel and will look into this in more detail. Good to know about stomach acid issues and Symprove, might give this a try. Thanks again.

[wedgewood in reply to NicRee]

Hope all goes well NicRee! I just had a message from someone who has had great success with Symprove.

[JanD236 in reply to wedgewood]

Just to say a very big thank you for pointing me in the direction of Symprove. I've been using it for a week now and within 3/4 days there was a marked difference. I now feel the best I've felt for many months.

[wedgewood in reply to JanD236]

I can't tell you how pleased I am to hear that! I took it at full dosage for about 4 months, and now I'm down to half dosage, and still feel well on that. Sometimes I forget to take it, and don't have any ill-effects! I think I will take it forever! I know it's rather expensive, but it was certainly worh it. Hope you go from strength to strength!

[michelleveg in reply to wedgewood]

What about hydrochloric acid supplements? Do these help? Aren't there any ways to increase stomach acid with bitters, or certain foods such as lemons and limes? I have similar problems as you, maybe not the same, but I do react adversely to B12 supplements, they seem to feed bad bacteria in me. Still taking the probiotic? What kinds of foods you eat?

[wedgewood in reply to michelleveg]

In the beginning I did take a Betaine Hydrocaloric acid capsules with pepsin (Amazon,Swanson) when I ate protein. I am a bit nervous about taking them,and I have improved so much with taking Symprove, that I don't need them anymore. I take a half-dose of Symprove now,and often forget, without any consequences . I do try to cut out wheat . I eat light rye sauerdough bread. I very fond of and eat a lot of anything acidic--grapefruit and oranges.Raw unpasteurised organic cider vinegar with good honey makes a nice drink with hot water. Am thinking about eating more probiotics foods like raw organic sauerkraut(expensive in health food shops,but cheap to make yourself) Natural joghurts. Kimchi etc. It is said that sauerkraut is superior to any probiotic preparation. But since Symprove tuned my life round, I am loathe to give it up! I had to phone Symprove the other day,and the lady there told me that they were working on getting Symprove approved for NHS prescribing! (Can't believe that that will ever happen)

I need to inject Methylcobalamin weekly,but will now try to cut this down to 10 days, then 2 weeks,etc.and find out when symptoms kick in again.

There is so much trial and error involved as we can't get any help on this from the NHS. And we are all different . I wish you all the very best in improving your health. Mary

[fbirder in reply to michelleveg]

I was very keen on betaine HCl with meals. And it certainly did clear up my GI symptoms. However, I believe I may have overdone it as I started to get bad symptoms again.

These were, however, different. They reminded me of when I had a severe case of food poisoning in Egypt which was treated with antibiotics. When I got home I suffered from problems that seemed to be mainly down to low volume stools. I used probiotic yoghurt to rebuild by gut flora - and it worked.

I assumed that I'd killed off my bacteria with too much acid. So I stopped the betaine HCl capsules, started a course of Symprove (Thanks Wedgewood) and went back to taking 50 ml of lime juice with lunch and dinner (don't bother with it for breakfast). Now everything is back to normal.

I dilute the lime juice down to make it more palatable. Low-cal fizzy orange works well, as does tonic water (especially with a splash of gin). In restaurants I ask for a separate glass of water.

Symprove is expensive, so I just take one dose (split in two) a week. Every day I take a Bio-Kult capsule. When the Symprove runs out I'll probably not get any more (unless I can get it on prescription).

I know I don't have coeliacs (checked during a gastroscopy) so I see no point in avoiding wheat. I do have problems if I drink a lot of milk, so that's limited to 150 ml per day - just for my porridge.

[boydsfoolishrose in reply to JanD236]

Ask your doctor to test for IGA Deficiency.

[NicRee in reply to JanD236]

Jan, thank you for your response. My current symptoms are not related to my stomach, all blood tests are clear for other conditions. Doc has changed my brand of B12, hopefully this will make a difference. I do agree that what I eat makes I difference to how I feel. I'm going to speak to a nutritionist and look at my diet. Thanks again.

[NicRee in reply to Allyson1]

Allyson, thank you for your detailed response. My current symptoms include a rash at the back of my neck, scalp and stomach, fatigue, constant ringing in my ears, breathlessness, muscle pain and mood swings. I am due a B12 shot today, I have managed to change the brand, hoping this will make a difference. I will look into the things you have mentioned. Thanks again.

[Polaris in reply to NicRee]

People often experience an aggravation of symptoms (some of which you mention) as though the nerve endings are coming back to life before they eventually improve.

[Allyson1 in reply to NicRee]

B12 can cause serious cystic acne in some people. Mine did, and it started on the back of my scalp and hairline before moving to my face. The acne didn't really hit for 2 or 3 months, then it was unstoppable.

Cobalt allergy can cause rashes too.

I had breathlessness, palpitations, muscle spasms with methylcobalamin. I think partly it was hypokalemia (low potassium induced by an increase in b12).

My mood swings got really severe- I felt like a different person- and I don't know what was going on there.

You may really wish to try to find the lowest effective dose for you and go very slowly. B12 can be overpowering for some of us.

[NicRee in reply to Allyson1]

That sounds exactly what I am experiencing. Is it possible to get tests for Colbalt allergy? No matter how many brand changes I make to B12 injections, they all contain Cobalt. I will speak to doc again to see what he suggests. Thanks again.

[Allyson1 in reply to NicRee]

I have read about cobalt allergy in passing, was never diagnosed myself. I believe it can be tested. All b12 contains cobalt. Many decades ago, before b12 was synthesized, they used to give liver preparations as injections. I wonder if that had awful side effects, and what the efficacy was.

B12 can have side effects aside from allergy. These include severe acne, palpitations, increased heart rate, muscle spasms, behavior and mood changes, nausea, diarrhea, swelling, bloating, joint pain, muscle pain, and more. Trying to figure out why I had these terrible reactions has been so difficult. There are so many theories, so many conflicts of interest, and so little research.

You may particularly want to ask your doctor about your folate, vit d, iron, and magnesium levels and check for thyroid problems and small intestinal bacterial overgrowth. These will make fixing b12 more difficult.

Dosage and frequency is key for me. Smaller doses multiple times a week instead of daily or weekly shots. Daily eventually overwhelms me, weekly isn't enough.

I know I have different side effects with different types of b12. Methylcobalamin just killed me, hydroxocobalamin was ok in doses of 250 mcg every several hours for a few days then a break, cyanocobalamin feels like very little change. I don't know why it varies or what it means. Some think the side effects are a sign of it working better, others of it doing harm.

Also diet was a big deal for me. If I could do it over I would cut all processed foods and especially sugar from the start and just eat whole foods like wild rices, meat, fish, eggs, vegetables, and healthy fats and a few fruits. I suspect good gut health makes b12 supplementation easier.

I also found Epsom salt footbaths eased the side effects somewhat, but could stave them off forever when I persisted on high doses.

Good luck!

[NicRee in reply to Allyson1]

Allyson, thanks for the great advice. Spoke to a pharmacist today he explained that all B12 injections have cobalt. He gave me a new brand of injection today, nurse gave me this today. She explained that she has never had a patient who was allergic to Cobalt before. I don't take any other B12 supplements apart from injection, would be worried my B12 would go too high! I have been told to judge by my own symptoms if I need B12 injection every 2 or 3 months. My diet is quite good, but going to review it further. Fingers crossed this new injection works, if not I will get allergy tested! Thanks again Nic

[Allyson1 in reply to NicRee]

Good luck!

[JanD236]

That's useful to know, thanks. I'll google symprove & buy some.

An Nhs dietician thought I had too much insoluble fibre in my diet (basically skins & stems of fruit & veg and seeds) and cutting this down helps a little. But not enough!

[_tracy_ in reply to JanD236]

I googled symprove and it is quite expensive here in the US. VSL 3 is another highly regarded probiotic, must be delivered refrigerated. My GI doctor prescribed it as part of my current SIBO (bacterial overgrowth) treatment and the pharmacy gave me an ice pack to get it home.

Also for gastritis pain you might try DGL licorice. I've had terrible stomach pain much of the day, finally remembered I had some tablets. Chewed one up and got relief in about 15 min. Pain now about 90% gone. These are cheap and easy to carry with you. Be sure to get DGL (deglycyrrhizinated), which means a compound that can cause high blood pressure has been removed.

[boydsfoolishrose in reply to _tracy_]

Amazon has a product called IGG Concentrate. It's helped me alot. Also, I was on Neurotin and it caused me such bad stomach pain I ended up in the ER thinking I had a stomach ulcer.

[boydsfoolishrose in reply to JanD236]

I'd test for IGA Deficiency. Have they made sure you don't have a Bezoar?

[Allyson1]

You may wish to look at Metabolics brand supplements. They are supposed to be very pure and free of additives. They are various oral forms, I don't see any injectables.

I think I may switch to their hydroxy drops instead of my cyano injections, if I do I'll give it a few weeks then update.

[NicRee in reply to Allyson1]

Will check it out, let me know how you get on.

[AZJJ]

Late entry here... but I recently had a VERY bad reaction to Hydroxocobalamin, just one 1000mcg sublingual dose... bad anxiety, almost to the point of panic attack... stomach pain, nausea... nasty!! The next couple of days, with very little eating, I noticed some significant abdominal bloating/distension and still have it several weeks later... my Docs did many tests, liver and kidney function, abdominal ultrasound, etc... so far all normal... saw a gastro Doc, but he was a total quack. No supplements seem to help. I also have pretty bad BPH, so maybe that is contributing... but have had this for a long time, with no abdominal distension... losing weight fast, hopefully due only to my lack of appetite... next up is a pancreas MRI... jeeze... any suggestions would be very welcome.

[lucasussex]

I feel same you rashes, histamine etc