I have recently had after many years of gradually worsening health had a private blood test which indicates that my B12 is low at 148 (reference deficient below 140). My doctor has done a repeat test and to look for intrinsic factor but I don't have the results yet. The reference range here used for treatment is below 120. The more I read about it the more I am worried and I have bought some methylcobalamin drops in purified water (about 800 mg dose) which I am now trialling gently as I have numerous food allergy / intolerance problems. I was vegetarian for nearly 20 years with occasional lapses and have breast fed all 6 of the boys sometimes for more than 4 years.
I have 100 ml in the bottle and am greatly concerned that my children, who have been vegetarian all their lives and are all showing signs of deficiency including Asperger's syndrome, unexplained failure to thrive etc. may need B12 too. I don't want to delay treating them as I understand damage can be caused. One is waiting blood testing for recurrent infections and gland problems, another lost a lot of weight recently. I have had a positive blood test for coeliac and a negative biopsy and am now gluten free (among other things). The children are not.
Is it safe to give one drop daily to my children under their tongues. What would be the disadvantages / dangers of doing this?
Also could I give it to my husband who had a major stroke 6 years ago and is currently on warfarin and statins? He has been vegetarian for more than 30 years.
I really want to do my best for the children and I feel I may not be if I let them become deficient in B12 / suffer the same health problems my husband and myself have.
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bd79og
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I think you might find Sally Pacholok's book "Could It be b12" interesting reading. There is a chapter on the autism/B12 connection
If you are coeliac, has your Gp advised as to whether to have the children tested. I have read that the tendency to develop Coeliac disease can run in families.
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"The reference range here used for treatment is below 120"
That seems very low. Has your GP seen these documents? They make it clear that patients who are symptomatic for B12 deficiency should be treated even if B12 results are "normal" range.
Google "BCSH Cobalamin and Folate Guidelines" A long document but well worth reading in my opinion. I found page 29, a diagnosis flowchart useful.
Other tests that can help to diagnose b12 deficiency are MMA, Homocysteine, Active B12. If you are supplementing already, the results of these tests will very likely be compromised.
My experience with the NHS is that once you start supplementing yourself it is extremely difficult to get a diagnosis. I self treat but it was an absolute last resort for me.
Good levels of folate and iron are needed for the uptake of b12 to be good.
has your GP tested folate, ferritin and a FBC (Full Blood Count).
There can be useful clues on a FBC. High MCV and high MCH can indicate teh possibility of a macrocytic anaemia. Low iron makes red blood cells smaller, low B12 and/or low folate makes red blood cells larger. If you have low iron and low B12 and/or low folate your red blood cells may appear "normal" size and a GP might miss that you have both problems.
Iv been researching as much info as possible as my husband two children and myself have all suffered I'll health. I found a lady called barbara oneil on utube she gives lectures on all aspects of health. I found her very knowledgeable and of great help in my quest . Hope this may help you. Take care.
Thanks for your help. The more I read about this the more I'm surprised that I did not know about this earlier and the more "red flags" for B12 we all as a family have!
Medical opinion especially GP is otherwise. I did talk about the range and treatment with the doctor and left in tears as I felt she just looked at the numbers and blamed me for the the values being low, she said that she saw a lot of people with values this low and they have all been due to diet and nothing out of the ordinary. I have been on an exclusion diet as it was the only way I could stop the horrible "allergic" type reactions I was having and I have managed to stop the asthma attacks and get reasonably stable. Any attempts to get diet input and help on the nhs has been impossible and I went to ask for thyroid tests as research led me to the suggestion that this might help me widen my diet. In her opinion all was "normal" (not in mine! as my TSH was 5.91 and T4 low normal). So I did a private blue horizons test which I took in to discuss as it showed my B12 was 148 and thyroid TSH up to 7.81 (range up to 4.2) they also did folate and ferratin and when I suggested I needed to revisit the coeliac (my blood test for this and negative biopsy was 5 years ago but avoiding gluten seems to help a bit with gut etc. issues) she said my folate and ferratin were normal (they were mid range so she had a point) so I was mistaken.
I fear that they will take a similar "numbers on paper" approach to the children and I think this is too important to wait until they get tested especially as they are unlikely to even put them in for the correct tests.
I did the nhs B12 test (results awaited) before I started trying supplements but at the moment am still struggling as after 3 drops of methylcobalamin spread over several days my asthma is back, peakflows have dropped below 300 for the first time in three weeks and I sound like I have a really bad cold and am coughing up horrible blood streaked phlem. I hope this will just be a blip but I fear that I need thyroid treatment in order to not react to B12 supplements!!
They won't even re-test my thyroid for another 3 months and then I need to show a "clear progression towards a TSH of 10 with symptoms or be over 10 to get treatment" (the words of the endocrinologist that the GP emailed who has not even met me!)
Sorry for the rant. I suspect many others have been struggling with this kind of thing and I don't want to put my children through this especially when I'm feeling so emotionally vulnerable (which could be a B12 kind of symptom).
most statins suppress B12 absorption. Unfortunately I think the interaction is two ways and B12 may interfere with the statins.
In theory B12 shouldn't do any harm and is something that your children need but .... if the cause of deficiency is related to MTHFR there are some genetic variants involved in MTHFR which don't respond well to methylated forms of B9 and B12.
Methyl B12 is used by some to treat forms of autism - particularly where caused by MTHFR variants.
Sorry, this probably isn't that useful an answer - just that things probably aren't straight forward and this is probably an example of a situation where it would be useful to know a bit more about what is causing the suspected B12 problems.
I'm reacting to the methyl so will try other supplements. At least it means I am absorbing it. If I can find a supplement which suits me it is likely to be better for the children. The most likely causes for B12 problems seem to be diet (vegetarian ? coeliac), other drugs (I have been on a lot of steroids for asthma and the children who seem to be suffering most have had Nitreous Oxide for dental treatment). thanks for your reply I find other sufferers the best source of good information!
The Celiac Center at Beth Israel Deaconess in Boston has a very good website with resources. They also have a book "Real Life with Celiac Disease" which is a very good overview of all the concerns with celiac. Even though they are in the US the website is worth a look as it has lots of resources.
Celiac runs in families. It is a genetic predisposition which may or may not be triggered into celiac at some point in life. Some children may not test positive right away, but may some years later. Treating early heals the damage to the small intestine, heals malabsorption, and decreases the risk of developing other autoimmune diseases and long-term complications.
It can be hard to get accurate test results for celiac, especially if you aren't eating much gluten, you could get a false negative. But it can be helpful to get children tested before stopping gluten so they get the positive results and no one questions the diagnosis. Otherwise if they wanted to be tested in the future they'd have to do a months-long gluten challenge. There are a lot of pros and cons to weigh.
As far as the methylb12 goes, Im not a doctor and can't advise you how to treat children, but I do know from personal experience it is possible to have strong side effects from methylcobalamin. Hypokalemia (low potassium) was one, also palpitations, rashes, migraines, fatigue, confusion, jitteriness, psychiatric changes (outbursts of rage, social withdrawal, paranoia, jumpiness), spasms, worsening gastrointestinal problems, swelling. Not everybody has these but mine were pretty severe.
I don't know why I have the side effects (there are lots of theories!) but I do know I tend to tolerate hydroxocobalamin better. I do have Hashimoto's and iron deficiency.
There is a trend in the natural health industry and blogosphere to push high dose methylcobalamin and methylfolate above all else, to treat other forms as poison, and to give endlessly complicated vitamin regimens. Severe side effects are seen as good signs, and responded to with more supplements. I am now quite skeptical of these sorts of practitioners. I'm not sure the info is all there yet. I'm not sure it's worth pushing through side effects just for the sake of taking the methylated forms.
That said some people do very well on methylated vitamins though and prefer them and have negligible side effects.
But if you are sensitive it's not a bad idea to trial slowly. If side effects occur, some people decrease the doses, change up the frequency, or switch to hydroxocobalamin.
I would think that for children it's important to keep the treatment tolerable and not force anything that causes them to feel worse. And tolerance really depends on so many individual factors, some of them unknowable.
It's important to have enough folate too but a vegetarian diet is typically high in folate. I think taking extra folate if you don't actually need it while b12 deficient can lead to worsening problems.
Hopefully you can find a doctor who will test and monitor these things.
I think you can get hydroxocobalamin (which the type used in injections) as an oral supplement, I can't remember where I saw it being sold (online) though, you'd have to google it. Some people use nasal sprays, oral sprays or patches. The injections are much more effective but if you can't get them for yourself & the children these other ways of supplementing are possibly better than nothing. Meridian do a gluten free yeast extract spread which has added B12 so if you are able to absorb it from food that might help, plus eggs and fish. I think my son is low in B12 but was within 'normal' range & could not get treatment, so is trying an oral spray and a lozenge, plus methyl folate.
The problem with self supplementing too of course, is the cost.
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