First, I am an American 47 year old male with previous lumbar back issues (DD) and previous migraine sufferer since I was a kid.
About 2 months ago I started to feel signs of overall body weakness, pins and needles mainly in my lower extremities, trouble catching my breathe, brain fog, fatigue, migraines, back pain, etc. After my blood test came back my primary doctor said I needed to start b12 injections weekly for a month, take over the counter b12 and multi vitamin daily and follow up after the month with another blood test. My levels were at 200. I also needed to start taking Vitamin D pills once a week 50k dose for 3 months. No results on this as of yet.
I followed this and began to feel better after my second injection. I have for the most part plateaued since then. I still have twitching on the insides of both of my knees, my left middle three toes twitch as well. Mostly at night or while laying down. Both of these symptoms were happening before injections. I also now have stomach issues that causes bloating and gas pains. And continuing back pain that I had prior to all of this but since the b12 issues it now feels slightly different. More nerve than skeletal or muscle related. The biggest issue is body fatigue. In the morning I usually wake with decent energy but around 5-6 in the evening I am exhausted. I work a desk job so low exertion.
I have since received my follow up blood test and my B12 is now at 1260. That seems like a huge jump. My doctor has not once mentioned PA to me but she insists on me receiving monthly shots from now on. She also told me my levels are now where she wants them to be.
I am thinking about my next steps as I don’t feel like my symptoms are all being addressed. My primary has stated that my blood test came back negative for autoimmune disease. Can you rule out all autoimmune diseases from one blood test? Isn’t PA an autoimmune disease? Why would I need monthly shots if it’s not PA? I am not sure I am happy with that diagnosis. I am wondering if anyone has any suggestions about the next step. Should I see a gastroenterologist? Should I have a colonoscopy? An endoscopy?
I am happy that my levels have improved and improved so quickly but I am unsure why my the levels dropped in the first place and what I should be doing next, if anything. Should I just wait it out and hope for improvement? My understanding is that increasing b12 with PA takes a lot of time but mine only took a month to go from 200 to 1260. Maybe it’s not PA and something else that may need addressing.
I realize that I need to follow up with my doctor but I am hoping to get as much information from others that have experience with b12 deficiency.
Any help would be greatly appreciated!
Written by
HBerry
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You cannot rule out PA with any current test. The test for Intrinsic Factor antibodies (IF is the protein needed to carry B12 from the gut into the blood) isn't much use. It gives negative results in 50% of people with PA.
Unless you're vegetarian/vegan, or you abuse nitrous oxide, or you've had gut surgery, or you've been taking certain medication PPIs or Metformin) for a long time, then you probably do have PA. Your gut problems are also symptomatic of PA (the same autoimmune response that stops B12 absorption stops stomach acid being secreted).
If you do have PA then your doctor is right - you need monthly injections for life. Your blood levels don't matter.
Your symptoms may take a long time to fade, especially the neurological ones. The fatigue may be due, in part, to your body's inability to make proper red blood cells. Now you have enough B12 your body will be making as many of them as possible. When they mature you should find your energy levels pick up.
But don't expect a miracle cure. Take it slow and steady.
HBerry - after a B12 shot your serum B12 levels will be off the scale - they will then drop over time as the excess is gradually removed by your kidneys. So, what is happening is that your levels are dropping to about 1260 in the time between the last shot and the time when the blood was taken for the B12 serum test.
Levels post loading shots don't really mean an awful lot unless they come back really low - which means your kidneys have removed excess - on average people seem to need much higher levels post loading shots than before - mine need to be permanently off the top of the measurable scale - though some are okay with much lower levels - but the average after loading shots is 1000+.
I would suggest that you keep a diary of your symptoms and note how they change with time from a maintenance dose as symptoms are the most effective way of monitoring levels post loading shots. It may show that you actually need injections more frequently than once a month to keep the symptoms under control.
PA is an auto-immune disease but it is currently quite difficult to identify the specific antibodies associated with it - the normal test (IFA) - gives false negatives about 50% of the time so a negative doesn't rule out PA.
What Gambit62 said about keeping a diary, I would advise everyone to do.
Before I was diagnosed last year I thought I was falling to pieces & feeling like a hypocondriac was horrible.
I wrote everything down regarding how I felt before the 6 loading doses I received. There was no improvement at that point at all post loading shots.
It wasn't until 2-3 days after my first 3 monthly injection that I felt much better, but only for 2 days, same with the second.
My Dr agreed to give me injections more often, as long as my B12 levels were low. But after advice on here, I soon learned that my levels would be sky high after injections & that levels don't matter once treatment has started. But my Dr wouldn't agree as my levels came back over the range.
So I took the plunge & started self injecting & ever since, I'm improving all the time.
Thank you for your response. It has been strange how my symptoms change on a daily basis. The diary will definitely help. At one point I started to have pains in my right side where my gallbladder is located. Both my parents had theirs removed. This lasted for about 3 days and now no pain there. Every new symptom can lead you down a new path of what ifs! At this point if it is only PA I’m dealing with I will make the adjustment. It’s just scary to think that if it is something else going on than why am I or a medical professional not doing more to discover other potential causes. There are a lot specialist doctors that handle autoimmune disease but it doesn’t appear that PA is one of them. This forum definitely helps ease the mind and I am sure that people are out there suffering worse than I am so I am thankful I am seeing progress. Thanks again!
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries.
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