Personal Story

Suzanne

pernicious anemia personal story
My name is Suzanne, and I suffer from Pernicious Anemia, the result of autoimmune gastritis. I am 66 years old and was diagnosed at 64 after exhibiting mysterious symptoms that no dr. understood—pale skin with dark undereye circles, fatigue and breathlessness, small fiber neuropathy (diagnosed 8 years prior), and the most disturbing symptom of all—weird, out of body spells with extreme irritability that would come on suddenly. I also had nausea and gastrointestinal distress resulting in urgent trips to the bathroom. This was not my first venture into rare disease. Each time I wondered if I was dying.
As background, I had ‘macrocytic anemia’ for at least 15 years. My MCV/MCH were always out of range which was dismissed by my internist who said, “you just have larger red blood cells.” I developed Hashimoto’s and autoimmune pancreatitis 15 years ago and noticed a gnawing sensation in my stomach. Although I shared that symptom with doctors, they seemed unconcerned and just prescribed acid reducers without any investigation. It was a difficult journey to my autoimmune pancreatitis diagnosis, and I blamed all my symptoms on that.

Although my father suffered with autoimmune disease, as far as I know, no one else has had pernicious anemia or autoimmune gastritis. Most of the time, I appear healthy, so sometimes I think friends wonder if I’m a hypochondriac. However, during the pale days, people would comment about that. I don’t talk about my conditions to anyone except my closest trusted confidantes and my husband.

My internist who ran regular CBC’s (full blood tests) ignored my increasing MCV/MCH levels but sent me to a gastro doctor for an endoscopy and further investigation. I wondered whether he thought I was some kind of nutcase, but that was probably based on previous experience with doctors. The gastro doctor discovered inflammation and diagnosed gastritis, but despite my autoimmune history relied only on biopsy and did no additional blood work. His comment about my symptoms was to ask about my drinking history while suggesting my complaints had nothing to do with GI and I should see an endocrinologist. Of note, although B12 markers were always out of range, my B12 serum levels were high so a B12 deficiency was not considered.

Unsatisfied and afraid of my mysterious symptoms, I went to a functional doctor who coincidentally had a gastrointestinal background. After reviewing my history and blood work, the first thing she said was, “I think you need B12 injections twice a week, and you haven’t been heard.” I was so relieved as I had found them hard to access, as though they were a controlled substance vs. a helpful vitamin. My own research has led me to believe this was an ongoing issue for me, but no one would listen. She ran tests for parietal and intrinsic factor antibodies, and I was positive for both. I also had extremely high gastrin, indicating my autoimmune gastritis was not a new disease since it was affecting stomach acid production and B12 levels. I later learned that there is a high association between Hashimoto’s and autoimmune gastritis, and this diagnosis is often missed until late in the disease course—average age of diagnosis is 60. I suspect that ‘gnawing’ in my stomach was the beginning of gastritis. I first noticed that in my 30s.

Now, two years later, my B12 levels and markers are normal and my neuropathy is slowly improving. I realized I suffered needlessly for years with ‘idiopathic’ neuropathy pain which would have been alleviated with regular B12 shots. I had terrible nightly flares that included an associated condition called ‘erythromelalgia’, red hot burning feet. It was literally hell. The esteemed Johns Hopkins Neurology Department missed this as a cause since they only looked at B12 serum levels, and mine were high—just meaning a lot was floating in my blood but not getting utilized by my body. I do not know if I have permanent nerve damage—time will tell.

Since testing reveals that I have genetic methylation issues which might inhibit the conversion of cyanocobalamin into usable B12 in my body, I inject regularly with methyl B12 at home which is prescribed by my functional doctor.

The good news is that under functional medicine guidance, I am now greatly improved. My B12 levels went normal after six months of twice weekly injections, and my symptoms are mostly gone. My neuropathy is improving (I understand it can take up to two years after B12 levels are restored to heal nerves), and my only complaint is the autoimmune gastritis symptoms. I am hopeful that with more time and continued partnership with my functional doctor that these symptoms will improve. My other autoimmune diseases are in remission and require no treatment.

I have learned that most doctors don’t understand B12 and miss early diagnosis and treatment. I have been gaslighted by some, dismissed by others, and listened to by one—and that one doctor put me on the path to healing. She was angry btw, saying, “any med student should be able to diagnose low B12”. I encourage everyone to be their own advocate and search out answers. The Pernicious Anaemia Society, along with online help groups, have been a very important source of information. I am also a medical sleuth and look at many academic studies to inform my opinions, and I share them with my healthcare providers. If they’re not open to this, I look for someone else which is fortunately an option in the USA. My advice is to do your own research, believe in your intuition and don’t stop until you find the right healthcare providers. I believe I am only better because of my persistence on this path.

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