Famous People with Pernicious Anemia



A friend of mine sent me a link to the New York Times article: ” Was Mary Todd Lincoln Driven ‘Mad’ by a Vitamin Deficiency? ” It turns out she had a lot of the physical and psychological symptoms that fit with pernicious anemia.

In 2012, shortly after my diagnosis of pernicious anemia, a friend in Chicago said she thought Annie Oakley died from pernicious anemia. A quick search online seems to bear this out.

The article about Mary Todd Lincoln states “Severe cases are not often seen now because blood tests can diagnose the disease early and doctors can treat it. But that was not so in Mrs. Lincoln’s day.”

This was an unsettling statement because, although pernicious anemia is now an easily diagnosed disease, it is not always readily diagnosed. I think much of this is due to doctors not being aware of the symptoms and are mistakenly looking at red blood cell enlargement on a CBC (complete blood count) as the indicator of whether to test a patient’s serum vitamin B12 level.

A woman I know has symptoms of orthostatic intolerance and many symptoms of vitamin B12 deficiency. She is not quite vegetarian–but she eats very little meat (vitamin B12 is mostly found in meat and eggs), so is squarely in the risk group for low B12 levels. Yet, her physician refused to check a baseline vitamin B12 level because her other labwork results didn’t warrant it. My guess is that the doctor didn’t see the enlarged red blood cells that indicate severe and late-stage B12 deficiency. This doctor apparently doesn’t know that B12 levels on the low side of normal are sometimes an indicator of vitamin B12 deficiency. Without visible blood cell changes, there can be severe nervous system damage taking place.

This lack of knowledge will continue to be detrimental and, in some cases, devastating to the lives of people with undiagnosed/ misdiagnosed vitamin B12 deficiencies.  Medical schools need to start teaching about the damage that can be done in the human body with “low-normal” vitamin B12 levels and health care practitioners need to start sharing this information.

The Big POTS Study

I recently ran across the Big POTS Study questionnaire on the Dysautonomia International Facebook site. They also have a link to the survey on their Web site. Dysautonomia International can also be found on Twitter at @Dysautonomia. The Big POTS Study is sponsored by Vanderbilt University and Dysautonomia International and means to study the impact of Postural Orthostatic Tachycardia Syndrome (POTS).

The survey took an hour or two to complete. The questions brought up a lot of emotion; it was a bit like picking at the scab of a wound I thought had healed. I don’t think it’s giving too much away to say that there is a question that asks what you think caused your POTS. According to the doctor who finally diagnosed my pernicious anemia, the autoimmune disease pernicious anemia was the cause of all of my POTS symptoms. Pernicious anemia blocks the uptake of vitamin B12, which is critical for myelin sheath formation, so it makes sense that, if someone is not getting enough vitamin B12, their autonomic nervous system is not going to be happy. My blog post POTS vs. Vitamin B12: a Venn Diagram, explains this further.

To complete the survey was a time and emotional commitment, but my hope is that my input will help others. If you have received a diagnosis of POTS, I encourage you to complete the 29-page survey.

October is Dysautonomia Awareness Month.

Be Well & B12!


Sally Pacholok: the Movie

Sally Pacholok the Movie:


Those of you who have read my previous blog posts will be familiar with the name “Sally Pacholok” and will recognize the name of the author of Could It Be B12?: an Epidemic of Misdiagnoses.  Ms. Pacholok is a nurse whose mission is to educate patients, doctors, and the general population about the prevalence of vitamin B12 deficiency. Hopefully, this movie that was inspired by Sally Pacholok will extend the reach of this critical message.

Even marginally low vitamin B12 levels can cause damage to the nervous system and can have deleterious effects on the body and mind. I have mentioned specific symptoms in previous blog posts.

There is also a Facebook site for Sally Pacholok, the Movie.

Please spread the word and…

… Be Well and B12!

Got sinus trouble?

neti pot and acoutrements
Do your sinuses feel like they are in spasm? That’s when I know it’s time to… (drumroll)… use my neti pot! After recent generous Midwest rains, I think the mold count these days is an exacerbating factor. I thought I’d share the approaches below:
The first one is to use a neti pot for nasal irrigation. It has a very long history of use: “The neti pot is the oldest form of nasal irrigation and was developed as an ayurvedic yoga tradition in ancient India.” It is not necessary to know about the Ayurvedic/ Ayurveda roots in order to benefit from nasal irrigation.
Whether you find this man amusing or a bit over-the-top,he demonstrates two of the options in nasal irrigation. There’s a scary video following this one that talks about amoebic brain infection from getting water up the nose. On that point, I boil the water I use in my neti and let it come to just barely warm temp before I use it. I put it in a 2 cup Pyrex cup, If it cools off too much, I reheat it for 1/2 min or so in the microwave. Always test it on your finger first. I use the inexpensive salt packets sold with the NeilMed neti pot; I use 2 packets to make the solution a bit hypertonic, since that will pull more nasal fluids out of the tissue. I have used the squeeze bottle technique shown in the video, but don’t like the amount of active force. I prefer the passive force of the vacuum created with a good seal on the nare that happens with the traditional neti pot. It’s gentler and lets gravity do the work.
Also regarding the technique shown, you don’t need to blow that forcefully afterward to clear the nare (that side of the nose). A simple puff will do. What I find most helpful is to hang upside down afterward to clear the extra fluid out of your Eustachian tubes (make sure you have a handful of nasal tissues). You can do a yoga position to drain out the extra fluid from your nose and Eustachian tubes: Inverted triangle pose helps clear the Eustachian tubes. This “revolved” triangle pose should work equally as well.
Apart from sinus surgery, nasal irrigation has been the most helpful thing for my sinus health. That said, you want to make sure you have a patent nasal airway–if you’ve had a broken nose or anything, the water might not go where it is supposed to go.
Here’s a recipe for the salt solution that an ENT gave me:
~ 1/2 -1 tsp pickling salt (no preservatives)
~1/2 tsp baking soda (to buffer the sting of the salt)
Stimulating acupressure points on the face and relaxing neck and facial muscles is another way to relieve sinus pressure. This technique is helpful for getting the sinuses to drain.  I’ve had these points targeted during acupuncture. I have found acupuncture to be helpful as well.
There will be a hand mudra used in the alternate nostril breathing technique mentioned next. Hand mudras can help facilitate healing in many areas of the body.
Alternate nostril breathing is a technique Meg, my former yoga teacher, taught the class. Besides better sleep and feeling calmer, she said it is also good for sinuses. This is a close approximation to the technique she taught.
When in doubt, seek medical attention and advice for sinus trouble. Know that antibiotics often are not effective since the sinuses are not well-vasculated. Also, most sinus infections are self-limiting and will resolve without antibiotics. The use and overuse of antibiotics is another topic that deserves a separate blog post. Sometimes chronic, recalcitrant sinus infections need surgical intervention to fix physical impediments. I had sinus surgery in 1994, which helped a lot. I had a deviated septum and so had a septoplasty and the installation of “NA windows.”
These are just a few of the things that have helped me and my sinuses throughout the years. I hope you find relief from your sinus woes.

Be well!

Addison-Biermer Anemia (aka Pernicious Anemia) and its relation to POTS symptoms

lentil soup nov 2014

Here in the Midwest, it’s 23 degrees below the average temperature for this date. It’s soup weather. It turned out it was also a good day to catch up on some correspondence and research.

My search for a clear explanation of POTS was inspired by a conversation with an old friend; we had not spoken in years. He asked about my health and, once again, I tried to explain my lingering symptoms of POTS (Postural Orthostatic Tachycardia Syndrome)–why, although I have a “real” diagnosis now and a treatment (though not a cure), I continue to experience tachycardia (rapid heart rate), chronic fatigue, and other persistent symptoms.

I am one of the lucky ones– I did finally find a cause for my POTS symptoms. In Wisconsin, I saw fifteen doctors and, with an “impressive” tilt table test at the Wisconsin Heart Hospital, and, after decades of searching for what was wrong with me, I got a diagnosis of POTS.  Four years later, in February of 2012, Dr. Joe, finally made a more correct diagnosis of pernicious anemia; he isolated the actual cause of my POTS symptoms. He said pernicious anemia accounted for all of my POTS symptoms. He said it would be “a long haul” to healing, and to hopefully reversing the nerve and other damage that has been done from depriving my body of vitamin B12 for many years. I received many misdiagnoses and doctors missed the diagnosis of pernicious anemia for decades, partially because my blood (CBC–complete blood count) did not exhibit the typical (now I know late stage) changes with vitamin B12 deficiency. To make my case even tougher to diagnose, the one doctor who did test my vitamin B12 blood level, found it to be technically in “normal” range and ruled out B12 deficiency as a possibility. It turns out nerve damage can happen even when one’s vitamin B12 level tests “normal” because there is a significant part of the population that is actually deficient in “normal” range.* I say the lab parameters need to be changed. Most doctors don’t seem to know this, though I keep finding on websites that further testing needs to be done (homocysteine level or MMA–methylmalonic acid) if a patient’s serum vitamin B12 level is “low-normal” but they are symptomatic. I was very symptomatic and had textbook signs of vitamin B12 deficiency, which turned out to be caused by pernicious anemia (Addison-Biermer Anemia).

Yes, nerve destruction can and does happen while the blood does not exhibit changes typically found in vitamin B12 deficiency. I’m living proof. Internet Scientific Publications (ISPUB.com) gives a thorough description of the various impacts of vitamin B12 deficiency on the nervous system.

In the course of my search for information, I found Web sites related to POTS , pernicious anemia, and autoimmune diseases. I found out that pernicious anemia is also known as Addison-Biermer’s anemia. I also found that autoimmune disorders can sometimes come in clusters; for instance, people with Addison-Biermer Anemia can have a coexisting autoimmune thyroiditis. Interestingly, I have two sisters with Hashimoto’s thyroiditis.

I have now been taking injections of vitamin B12 for about three years, and, though I’ve made some gains, I continue to experience many of the POTS symptoms. The description of POTS–what it is, and what it is not (it is not anxiety)– by Dysautonomia International, is one of the best I’ve ever come across. Their site also has a comprehensive list of lifestyle adaptations for those experiencing POTS symptoms.


Dysautonomia International also has a Facebook site:


There are many POTS and dysautonomia informational and support sites on Twitter as well.


* About 5 – 10% of those in “low-normal” (200- 400) range, according to the asterisked note on my 2012 B12 lab result. As I recall, the lab was Dynacare Lab.


Be Well & B12!

tulips cinco de mayo


This photo has absolutely nothing to do with pernicious anemia or vitamin B12, but it’s 9 degrees Fahrenheit and I need a reminder what spring will hold.

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 1,700 times in 2014. If it were a cable car, it would take about 28 trips to carry that many people.

Click here to see the complete report.

The Goiter Belt and the Importance of Iodine

rural bettendorf

Here in the Midwest (of the United States), we live in “the Goiter Belt.” A goiter is “an abnormal enlargement of your thyroid gland.” The thyroid gland, a butterfly-shaped gland in the neck, is an extremely important gland and can affect mood and body functions. The Mayo Clinic lists common signs and symptoms of hyper- (“high”) and hypothyroid (“low”) imbalances. This list is by no means exhaustive.

“Although goiters are usually painless, a large goiter can cause a cough and make it difficult for you to swallow or breathe.The most common cause of goiter worldwide is a lack of iodine in the diet.”

According to WH Foods, “iodine is a key component of the hormones made in the thyroid gland. These hormones are absolutely critical to human health, helping to control energy production and utilization in nearly every cell of the body.

The balance of iodine in the thyroid gland is tricky, and both too much and too little iodine can slow down the production of hormones. This is not a situation where more is always better.”
Also according to WH Foods, “the risk of iodine deficiency is substantial in the United States and has been on the rise. The average urinary iodine level—a good measure of recent dietary iodine intake—has dropped by more than half since the 1970s. …
…The reason iodine levels  are dropping in the population is two-fold. One is that within the world of commercial baking, many bread manufacturers have moved away from iodine-containing compounds to keep dough fresh. But a bigger change is that the average U.S. household is doing less and less home cooking and resorting more and more often to prepackaged foods, ready-to-eat foods, and restaurant eating (including fast food eating). …even though many prepackaged foods are high in sodium, the salt added to these foods has not necessarily been fortified with iodine…There is a good bit of unpredictability in the iodine content of prepackaged and ready-to-eat foods.”
“There are compounds called thiocyanates in some commonly consumed foods. At high concentrations, these chemicals can interfere with the uptake of iodine into the thyroid gland, making a person seem like they have iodine deficiency, when they may not. The common thiocyanate containing foods include cassava, soy, and Brassica Family vegetables “(commonly known as cruciferous vegetables). “Tobacco smoke also contains thiocyanates.”

The proper intake of iodine–not too much, and not too little– is critical for the normal functioning of the thyroid gland. If there is not enough iodine taken in with natural foods and foods supplemented with iodine, goiter can result. Luckily, iodine is easy to find. One of the easiest ways to get it is to make sure you are using iodized salt. When I was growing up, Morton iodized salt seemed like the only type of salt to buy. Today there are myriad salt choices: sea salts, including Sel de Mer and Fleur de Sel ,have gained popularity. It’s important to realize that not all salt has iodine in it. Check the packaging for iodine content, or “iodized”on the packaging.

Here’s a handy chart of natural iodine sources and a great explanation of the importance of iodine in the diet. As you can see, sea vegetables provide the most iodine.

So, if your landscape looks like this…

rural landscape

…you might be deficient in iodine.

Of course, if you are having symptoms of goiter, hypothryoidism, or hyperthyroidism, please investigate further with your medical practitioner.