Pernicious Anemia with worsening neuropathy. I'm new here.

[jimmel196]

I was diagnosed by my physician in late February 2020 of pernicious anemia after a follow-up visit to my physician from an emergency room visit approximately 1 week prior. I will try to tell my story without being too lengthy, so here goes. Approximately 3 years ago I began having very brief episodes of double vision which lasted only seconds. Initially, they only occurred about once a month but became more frequent over time. Initially, they were so brief I wasn't even sure what had happened. About 1 1/2 years ago I noticed slight numbness in both my little toes then shortly thereafter the numbness spread to the bottoms of my feet, then to my hands, legs, arms, and up to my umbilical area. after nearly passing out at work one day I finally decided to see a doctor. I went to my local emergency room where several tests and a lot of blood values were checked. I was told by the emergency room physician that I had macrocytic anemia and was told to follow up with my physician, which I did the same week. my physician performed a whole battery of tests and I was told I had a low B12 at a level of <159 pg/ml with the normal range being 239-931. she also diagnosed me with peripheral neuropathy as a result of the low B12. My iron and vitamin D and hematocrit were also low. my folate was normal. I was started on IM injection of cyanocobalamin 1000MCG/ML once daily for 1 week then twice weekly then 1 weekly. approximately 1 month later I had an Intrinsic factor antibody test which was positive. My Helicobacter pylori antibody tests were normal.

Now 6 months after being diagnosed with pernicious anemia my energy has improved, I have had no double vision since the first B12 injection and my lab values have mostly returned to normal. I am still bothered by the peripheral neuropathy which is even a little worse than 6 months ago in my hands, arms, feet, and legs.

Well, that's my story and any suggestions or input will be appreciated.

[Sleepybunny]

Hi,

I'm in the UK and I'm guessing you're in US.

Treatment patterns for B12 deficiency can vary from country to country and the type of B12 used can vary. If you put your country in title of your posts it may attract attention from other forum members from your country.

How often do you get your B12 injections now?

Have you seen a neurologist about the neuropathy?

"my physician performed a whole battery of tests "

One of the best pieces of advice I ever got was to always get copies of all my blood test results and to check the results carefully.

Do you know the actual results and reference ranges for folate, ferritin or other iron tests and Complete Blood Count (CBC...known as Full Blood Count in UK)?

"My iron and vitamin D and hematocrit were also low. my folate was normal"

Are you being treated for low iron and low Vitamin D?

B12 books I found useful

"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 (US 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.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Overseas members can use online contact form.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 article from Mayo Clinic (US)

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Article suggests ....

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.

3) Successful treatment should not be stopped

I am not medically trained.

I hope you find the answers you need.

[jimmel196 in reply to Sleepybunny]

Thanks so much for the information. I am in the south eastern US (Hendersonville, North Carolina). I am currently self injecting twice weekly (1mg IM). I was just referred to a neurologist but am awaiting the appointment date. The following are some of my lab values, some list before and after:

Initial B12: <159 pg/ml currently 598 pg/ml (normal range 239-931)

Ferritin: 310 ng/ml (normal range 18-464)

Iron saturation: 15.1% (normal range 15.0-55.0)

Total Iron Binding Capacity: 291 (normal range 250-400)

Iron: 44 (normal range 50-160)

UIBC: 247 calc (normal range 126-382)

Vitamin D 25-Hydroxy: 15.5 ng/ml (normal range 30.0-100.0)

Folate Hemolysate: 297 ng/ml (normal range not established)

Folate, RBC: 853 ng/ml (normal range >498)

Hematocrit: 34.8% (normal range 37.5-51.0)

Fecal Occult Blood: Negative

CBC: I am just going to list the abnormal results.

Red Blood Count: 3.96 x 10 6/mm 3 (normal range 4.20-6.30)

Hemoglobin: 13.6 g/dl (normal range 14.0-18.0)

Intrinsic Factor Abs, Serum: 48.9 AU/mL (normal range 0.1-1.1)

Helicobactor pylori Antibody IgM: <9.0 (normal range 0.0-8.9)

Helicobactor pylori Antibody IGg: 0.31 Index Value (normal range 0.00-0.79)

Helicobactor pylori Antibody IgA: <9.0 (norman range 0.0-8.9)

[fbirder]

And you're still getting injections once a week?

If so then I wouldn't expect your neuropathy to be getting worse.

You really need to see a neurologist. There are over 80 possible causes of peripheral neuropathy. It may be that you have one of the other 79 and it's just coincidence that it started close to the time that you became B12 deficient.

[Seth12345 in reply to fbirder]

The fact that he was diagnosed with macrocytic anemia suggests end stage B12 deficieny with would also suggest the reason for his neuropathy. It took me 5 months for my nerve pain to simmer down after weekly injections. I recently switched to daily and it significantly helped me.

Just my opinion, I could be wrong.

[fbirder in reply to Seth12345]

Yes, it's obvious that there is a B12 deficiency. That doesn't mean that is the cause of the neuropathy, although it probably is.

I was diagnosed with a B12 deficiency (my B12 was undetectable). When I was diagnosed I had some slight numbness and tingling in my big toes - everybody knew ot was the B12 deficiency.

It wasn't.

I just happened to have something else that caused the neuropathy that struck at the same time as my diagnosis.

So it's always worth getting a neuropathy checked.

[Seth12345 in reply to fbirder]

You're totally right. I couldn't agree more about getting checked out. I always appreciate your thoughtful responses.

I guess I'm already jumping to the "next step" when the doctor says they have no idea but that it isn't B12.

Like they say "when you hear hoofbeats think horses not zebras". Especially if the individual was always healthy and the only test that comes back problematic was B12. This is what happened to me. Yet so many doctors told me that my issues couldn't possibly be caused by B12 yet they had no other explanation.

[jimmel196 in reply to fbirder]

It certainly can be frustrating at times.

[JAMV in reply to fbirder]

May I know the cause of your PN?

[jimmel196 in reply to JAMV]

It was determined by my physician that my neuropathy was caused by b12 deficiency caused by pernicious anemia. The numbness started in my small toes on both feet and over the span of a year it spread up my legs to my waist and my hands and arms. I had a full spine MRI which revealed subacute combined degeneration of the spinal cord in my cervical spine. This was also a result of extended b12 deficiency. Looking back I had a lot of subtle symptoms that I didn't think to much about. I'm a retired paramedic so I should have known to seek medical attention much sooner than I did (stupid me). My neurologist also believes my PN was caused by b12 deficiency but quite honestly I wasn't very impressed with her knowledge of b12 deficiency. I'm now 1 year after diagnosis of pernicious anemia and my PN is pretty much unchanged. Since being on b12 injections my macrocytic anemia is gone, my iron and vitamin d levels have returned to normal and my brief episodes of double vision are completely gone. I know this is a long winded answer but I hope this helps. Good luck to you.

[fbirder in reply to JAMV]

I have Idiopathic Axonal Neuropathy. They don't know what causes it, but they know it's more common in tall men in their early 60s. Unfortunately, there is no known cure. I try various medications, but it's deteriorating very slowly.

Both neurologists agreed that the timing was totally off for it being caused by a B12 deficiency. When I was diagnosed with PA the neuropathy was very slight. Over the next 6 months I was pumping B12 into me and the neuropathy carried on getting worse. Then the rapid decline stopped, almost.

Today I try amitriptyline in addition to gabapentin.

[jimmel196 in reply to fbirder]

Thanks for responding. I am currently injecting twice weekly and have just been referred to a neurologist am awaiting my appointment date. I frequently have buzzing sensations in my legs and arms as well as almost an electric pulse down each of my hands and legs.

[Lunario in reply to jimmel196]

That sounds very similar to my experiences. After treatment began, it took a couple of months to recover from the worst. I also had polyneuropathy and a very weird sensation as if electric waves were buzzing through my body. It occurred randomly, I recall how frightening that was.

Sleepybunny gave you a bunch of links, the article from the MAYO Clinic is very interesting as well as this one: onlinelibrary.wiley.com/doi...

It says: "The BNF advises that patients presenting with neurological symptoms should receive 1000 lg i.m. on alternate days until there is no further improvement."

I followed this advice and I am glad that I did! I was diagnosed in 07/2019 and I self-inject 3 times a week now. This frequency works for me to keep symptoms at bay.

In order to avoid skin blemishes by the extensive use of B12, I take 5mg biotin every time when I have a jab.

Like in the UK and in other European Countries Hydroxocobalamin is the preferred substance in Germany (where I come from). I had my loading doses with Cyanocobalamin which is excreted faster than Hydroxocobalamin, at least I can confirm that. As you are in the US it is very likely that you inject Cyanocobalamin.

So, I wonder if two times a week is enough for you? However, you will hopefully feel better soon.

[Hidden in reply to Lunario]

Hi, Lunario, i was diagnosed with peripheral neuropathy because of b12 defficiency, b12-50 pg/ml at the beginning of 2017. Very bad pins and needles, awful balance, i was walking with a stick. I self inject 3 times a week with cyano, hydroxo, methyl, no difference for me. Till now i have 606 shots. Now i am much better, of course not as i have been in 2015. I am 60 years man and now i am playing tennis on court. Sorry for my english. Good luck and believe in yourself. Chao.

[jimmel196 in reply to Lunario]

Thank you for your input. We have definitely had some of the strange buzzing or vibrating sensations. It starts working on you mentally after a while.

[jimmel196 in reply to Lunario]

In the US I believe cyanocobalamin is the on ly injectable B12 we can get.

[Lunario in reply to jimmel196]

I hope your neurologist will rule out any other reason. We all are different and we all have different and individual needs, so there is no "one therapy fits all" solution (what some doctors seem to believe). Some of us cope well with two monthly injections and others need them daily.

Having a look at Wikipedia for hydroxocobalamin ( en.wikipedia.org/wiki/Hydro... lead me to search at the FDA website: search.usa.gov/search?query...

So, I wouldn't give up to get hydroxocobalamin in the US, maybe you can get it on prescription (it's an over the counter product in Germany and Spain, I wonder if German or Spanish pharmacies send it to the US, probably not). If you're self-injecting, there is an online pharmacy in Australia that ships to the US, hydroxocobalamin probably as well. You possibly could get it also from Canada. I read it somewhere here in the forum.