Tag Archives: Vitamin B12

My #InvisibleFight: Fighting for Recognition of Chronic Illness

This year, Invisible Illness Awareness Week, which takes place from September 28 to October 4, has as its theme “My invisible fght”. I wrote for INvisible Illness Awarness Week in 2013, but skipped it in 2014, believing I didn’t qualify as someone with an invisible illness. Of course, I have a mental illness, but in my twisted mind I thought that didn’t count.

Over the years, I have been fighting to get a proper diagnosis and treatment for my chronic fatigue, irritable bowel symptoms and other random fun. Until early 2015, my syptoms were dismissed as being behavioral. What I mean by this is what I wrote yesterday: I was doing too little so I was fatigued. Never mind the other symptoms.

In February of this year, I was diagnosed with vitamin D, B12 and iron deficiencies. All were treated for some time, but eventually I was taken off all but vitamin D. This is a bit ironic, since vitamin D is the most potentially harmful of these three supplements and I have not had my vitamin D levels tested since April.

My doctor also didn’t follow the protocl for treating vitamin B12 deficiency. I had to insist on getting subcutaneous shots insead of tablets. The B12 research group in the Netherlands recommends shots, reasoning that, unless you’re strictly vegan,, you probably have a problem with absorption of vitamin B12 or you wouldn’t be deficient in it. The research group recommends starting with twice-weekly injections for five weeks followed by tapering based on symptoms, not serum B12 levels. I got the recommended five weeks of injections but they were discontinued after that.

I happen to be the odd one out where it comes to B12 deficiency, not having had a return in symptoms for about a month after the injections were stopped and having normal serum B12 levels even four months after my last shot. Though my symptoms returned, my B12 levels were normal about a month ago and the research group does not support supplementing without testing low in B12. Apparently, or so I assume, B12 deficiency wasn’t the root of my symptoms.

Does it matter what the root is? If there’s a targeted treatment, of course it does. If a simple pill or shot could help me live a normal life again, thee’s no reason not to fight for that. But I’ve now had these symptoms for so long. I’ve been on iron and B12 and now vitamin D for so long on and off with little long-term improvement. I’ve had so many blood tests and other tests that came back normal. And yet I’m still sick.

What am I fighting for, I wonder. If no treatment can cure my symptoms, isn’t it just the diagnosis, the recognition that something is wrong, that I fight for? In all honesty, I have to answer this question affirmatively. It’s not that I don’t also want treatment, but I also want to be validated. Is this normal?

in a way, it is. Most people with chronic physical health symptoms fight to be recognized as physically ill. They obviously also fight for treatment, but they also fight the stigma that is associated with the notion that they are psychologically ill. The problem is that, by wanting to be recognized as physically ill even if there is no known cause or treatment for our illness, we add to the stigma of mental illness.

Don’t get me wrong: physical symptoms need to be treated as they are, physical. Every possibility needs to be exhausted to find a cause and treatment for the symptoms. If there is none, that also doesn’t mean the cause is psychological or that psychological intervention will help. But it just might. Let’s fight for proper treatment of chronic illnesses and health problems, no matter their (presumed) roots.

Everyday Gyaan

Also linking up with #InvisibleFight at Invisible Illness Awareness Week. I will probably be writing another post on September 28 to honor the start of Invisible illness Week 2015.

Biomedical Treatments for Autism #AtoZChallenge

Welcome to day two of the A to Z Challenge. Today, I want to focus on a controversial subject: biomedical interventions for autism. Biomedical intervention can mean different things to different people. For example, NICE, the UK’s national institute that provides guidance on improving health and social care, defines biomedical treatment as any biologically-based intervention, including medications like antipsychotics. Most people in the autism community, however, see biomedical interventions as specifically treating biological dysfunction that they presume underlies autism.

Problems commonly believed to underlie autism include gastrointestinal disorders, food intolerances and immune dysfunction. These conditions are not always easy to diagnose, so many parents end up trying biomedical treatments on their autistic children based on a trial-and-error approach. This is not necessarily bad and is sometimes even recommended by regular doctors.

Biomedical treatments include special diets such as the gluten-free/casein-free diet or the Feingold diet, the latter of which is gaining increasing ground for being an effective intervention for ADHD. A special diet can be an elimination diet, as the GF/CF and Feingold diets are, but it can also be a diet that encourages people to eat certain foods, such as those containing essential fatty acids.

Biomedical treatments also include nutritional supplements such as vitamin B6 and magnesium, vitamin B12 or DMG (dymethylglycine). Hormones like melatonin (the sleep hormone) may also be used as part of a biomedical intervention.

Heavy metal chelation, where a person gets medications to remove metals like mercury or lead from thier system, is perhaps the most controversial biomedical treatment for autism. This is not only because autistic people do not have significantly higher levels of heavy metals in their systems than non-autistic people and hence the treatment is unproven, but also because it is one of the more dagngerous interventions.

There is no proof at this point that biomedical treatments are effective for autism, or even that physical conditions like the ones I mentioned above cause autism. However, many parents do report their child’s behavior significantly improves with these interventions. This could be because, like non-autistic children, autistic children may very well have food intolerances, nutritinal deficiencies, etc. These may cause significant physical discomfort. I for one do have a diagnosed vitamin B12 deficiency and irritable bowel syndrome (which is thought to be triggered by certain foods). When I got treated for the B12 deficiency, I not only got better physically, but mentally as well. This is the most plausible reason biomedical treatments help autistic children: they feel better physically so their behavior improves.

Rest #WotW

Last week, I was going to choose “sick” or “flu” as my word of the week. I was, after all, sick with the flu. To be honest, I’ve never been this ill as far as I remember. It doesn’t say much, as I hardly ever get ill, but really, this was bad. I “only” ran a fever for four days, but the shortness of breath and exhaustion were a lot worse than the fever. Actually, when I ran a low-grade fever, I felt worse than when I ran a higher fever.

The fever went away last week Friday, but it took me the whole week-end plus Monday and Tuesday before I had enough energy to spend considerable time on the computer. I wrote a few short blog posts for my Dutch blog, but didn’t have much energy for a real post.

This week, my word for the week is “rest”, because that is what I’ve been doing most of the week. I did try to keep some sembleance of a circadian rythm, though today I slept in till 11:30 AM.

I am still a little hoarse and coughy, but the exhaustion seems to have gone back to pre-flu levels. That means it’s still there to an extent.

I found out last week that I had deficiencies in iron, vitamin B12 and vitamin D. I’m now taking iron tablets, getting vitamin D drops once a week and a shot of vitamin B12 twice a week. I hope that this will help me feel less fatigued. Today is the first day in several weeks that I’m not going to bed right after getting my night meds. Then again, I hope to get enough rest tonight anyway.

The Reading Residence

Vitamin B12 Deficiency: The Invisible But Treatable and Worryingly Common Disease

In the summer of 2012, I suffered from severe, persistent fatigue and episodes of lightheadedness. I went to my doctor, thinking I had iron deficiency anemia once again. My hemoglobin was always normal, but the ironn itself, which is necessary in the production of hemoglobin, had often been low. This time around, however, the cause of my fatigue was vitamin B12 deficiency.

Vitamin B12 deficiency is relatively common but used to be underestimated. It affects between three and six percent of the population, becoming more common as people age (Allen, 2009).

Vitamin B12 deficiency is usually diagnosed through a blood test. A deficiency is defined as a serum level of B12 below 148 pMol/L or 200 pg/mL (Allen, 2009). My level at the time was 120 pMol/L, which my doctor said was “not very low”. This may be so – I have met people on the B12 deficiency foundation forum with levels of 25 or less -, but it’s still cause for concern. Besides, my methylmalonic acid (MMA) was also elevated, which Allen says is the “gold standard” for diagnosing B12 deficiency.

Symptoms of B12 deficiency can be diverse. I only had tiredness and lightheadedness, but you may also experience rapid heartbeat or breathing, pale skin, sore tongue, weakness, an upset stomach, diarrhea or constipation. If B12 deficiency is not treated, it could lead to nerve damage. In fact, Chris Kresser, a natural health specialist, thinks that some symptoms common in the elderly, such as cognitive decline and lessened mobility, may in fact be due to untreated B12 defieciency. Kresser also cites a much higher prevalence than Allen, but this seems to be due to bias.

It is the Dutch B12 deficiency foundation’s position that, unless you’re eating strictly vegan, the cause of B12 deficiency is most likely malabsorption and you need to insist on injections. Malabsorption can, according to WebMD, be due to various causes, such as atrophic gastritis (where the lining of your stomach becomes very thin), pernicious anemia, Crohn’s or Celiac Disease, etc. However, eating a vegetarian diet with few eggs or dairy, as I did, can also cause low B12 levels. I went with injections anyway because I hated the taste of the tablets.

It is also the B12 deficiency foundation’s position that measuring serum levels after you’ve been using injections, won’t be useful. In my case, I was given blood tests after the round of injections anyway, and these showed my B12 level was elevated in fact. It dropped to normal within a few months and stayed within the normal range until at least my last blood test in December of 2013. I eat meat again, so it could be that my low consumption of animal products, even though I wasn’t strictly vegan, was causing me to have a B12 deficiency.

Reference

Allen LH (2009), How Common Is Vitamin B12 Deficiency? American Journal of Clinical Nutrition, 89(2):693S-696S. DOI: 10.3945/‚Äčajcn.2008.26947A.