Oh hai, Pernicious Anemia. I haz you.

In the course of investigations for possible thyroid problems, I found out I had B12 levels near the lowest end of the lab range. Since I have discovered the best thing to do with one’s lab results is to not simply accept that anything in range is “normal” but to do some research, that’s what I did. (Generally if your lab results are in normal range and you feel well, then that’s fine. Except for kidney results – you can feel pretty good right up until near failure. Look after your kidneys!)

I discovered that there are several forms of B12, and if you have a low B12 level, you should also get the following tested:

• Holotranscobalamin (HTC) (active B12 what gets into your cells)
• Methylmalonic Acid (MMA) (raised if B12 is too low for you)
• Homocysteine (ditto)
• Full blood count (to check for megaloblastic cells)

I convinced my doctor to order those tests, even though she was pretty sure that my low B12 was simply due to being vegetarian. For whatever reason, the MMA isn’t covered by Medicare here so I skipped it and its $245 charge. However, my homocysteine came back raised and my HTC came back rather low, and with a note from the pathologist on the results that I should be tested for intrinsic factor antibodies and parietal cell antibodies. Which my doctor also ordered, and the results came back positive for parietal cell antibodies. This means I can absorb less than 1% of all the B12 I consume, and I need B12 injections for the rest of my life. Many sources (including my doctor) reckon that you only need one shot every three months, but there are lots of other legit medical sources that say anything from once a week or whenever you feel a bit run down. It took some arguing but my doctor agreed to give me one shot a week, as I have neurological symptoms.

Ah, symptoms. There’s a lot of crossover with hypothyroidism, chronic fatigue, celiac disease, and mental illnesses. Brain fog, breathlessness (it’s a bit more like needing to sigh a lot than being puffed) and fatigue are the big ones, along with depression, tingling in feet and hands, muscle weakness, and as it gets more advanced left untreated, even dementia and multiple-sclerosis-like symptoms. I am still fairly sure there’s something thyroid or pituitary related going on with me as I have many distinct symptoms. It’s not unusual for people with one autoimmune condition to have others, either.

Pernicious (“deadly”) anemia, despite the name, is not really a blood disease. It’s a nutritional deficiency, but before vitamins were understood that’s how it was named as signs and symptoms were similar to other anemias. Dr Addison was the first to formally describe it, in the mid-1800s, and until about 1920 it was fatal (1-3 years life expectancy), when it was discovered that ingesting large amounts of liver relieved symptoms. The three doctors involved in that won the Nobel Prize for their efforts. It wasn’t until 1948 that B12 (cobalamin) itself was discovered, and ways to produce it from bacteria were developed.

The liver worked because B12 is stored in the liver. It holds about 2-3 years’ supply in humans, so it can take a while before a deficiency occurs.

Pernicious anemia is more common in the elderly, and there are some medical researchers who are convinced that it’s undiagnosed or undertreated pernicous anemia that is a significant cause of dementia and Alzheimer’s disease. B12 is a water-soluble, non-toxic substance (people with cyanide poisoning receive a 5,000 times larger-than-normal dose of B12 over an hour with no ill effects) and aggressive therapy seems to be the way to go with most with a deficiency. Like with the struggle to get proper diagnosis and treatment for hypothyroid, CFS, etc, many doctors are not terribly well educated on the topic and it’s sadly common for people with PA to suffer symptoms yet not be allowed a B12 shot outside of schedule. It’s mind-boggling, really. The way my own doctor reacted was almost like I was asking for heroin!

I’m on the waiting list to have an upper GI endoscopy, too, as people with PA have higher risk of atrophic gastritis, polyps, and stomach cancers. This will also include biopsies for evidence of celiac disease. (I won’t go into detail about my gastroenterologist appointment, save to say that they install lap bands and aren’t terribly fat-friendly.) The waiting list is up to six months, as despite the alleged enormous number of fatties, there’s only ONE endoscopy trolley rated for patients over 100kg available, in a population area of 450,000. If all those fat people are supposed to be so sick, then why isn’t the equipment a priority? I wonder how many fat people get sicker and sicker waiting for equipment to free up. As fillyjonk asks, tell me again about how it’s fat that’ll kill you?

Thankfully it’s not long until my appointment with a doctor known to be much more knowledgeable and sympathetic regarding issues like this. I’m hopeful I can get a good treatment and recovery plan.

For more information on pernicious anemia, the best resource on the internet is the Pernicious Anemia Society, a UK-based non-profit. It’s free to join and post on the forums, where there’s lots of helpful adivce and support to be had.