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pernicious anemia, symptoms or something else?

JMACCDADDY profile image
42 Replies

I was diagnosed with B12 deficiency back in January 2008. I had no other symptoms at that time except I was just tired.. I don't think I was officially diagnosed with pernicious anemia at this time.. I had one injection each day for 10 days.. I felt great.. after that I went from one injection a month to one injection every 3 months, but for the last 4 or 5 years it's been one injection each month.. fast forward 2016, I had spinal cord compression that was fixed with a three level cervical spinal fusion at the surgery everything was fine.. 2018 I had some weird twitching in my calfs, and started to notice that my balance was off occasionally, but I just ignored it ..Jan 2022, I started having weird tremors / twitching in my calfs, and I would wake up at night, shaking all over, and occasionally I would have this electric type, feeling go up and down my spine all the way from my neck down to my back that happened 4 or 5 times that I could think of.. started to have word find difficulty sometimes and issues with anxiety .. I also have been experiencing some tingling, burning, pins and needles, hands feet, arms and legs and other areas of my body. I was officially diagnosed with pernicious anemia in May 2022. By the end of 2022 I'm noticing my balance was off more and slight weakness/ (not clinical )in left leg and foot,Dec 2022 diagnosed with sleep apnea. Jan 2033 started having some short term memory issues . my walking gait seemed off.. April of 2023 left toe is weak, Sept 2023 I starting having shortness of breath issues, Dr says asthma. i'm still not convinced.. Same time my left hand is feeling weak, by Oct 2023 shoulders feel weak, by Jan 2024 right foot is weak and in Feb 2024 I notice my chewing on my left side is harder sometimes after I have a long day of taking at work. also my tongue feels larger.. March of 2024 hips are weak. Feb 2025 my shortness of breath gets a little worse, march 2025 my tongue, lips and roof of mouth feel like they are burning. I've been taking my injections since 2008 as prescribed by my doctor, I've also taken B12 supplements. During this 3 years and 3 months as I look back Ive had a lot of pernicious, anemia symptoms, In Jan 2022 I started trying to figure out what's happening to my body., I did mention to one of my DR i think it be B12 but they said my levels were fine.. Keep in mind I've seen five neurologist over the last three years multiple times and they all cannot find anything. I've had 4 or 5 EMGs and I have no clinical weakness.. I've seen the top neuromuscular neurologist in North Carolina that specializes in MND. I've been to Duke as seen their neuromuscular neurologist... I have seen the rheumatologist three or four times , they can't find anything either .. this has been going on for a while so I think it could have something to do with that my body has changed over the years and I'm not getting enough B12 thru injections??

I'm sure I left something out so please ask any questions that may help.

I know this is a long story but please give me your thoughts?

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JMACCDADDY
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42 Replies
wedgewood profile image
wedgewood

My thoughts are that you should have B12 injections more often . I say this because it is a real possibility that that is what you need . Luckily , you cannot overdose on B12 ( unlike other vitamins and minerals . ) So , if the extra injections do not help , you will have done no harm . At the same time I would take a daily modest folic acid tablet( Vitamin B9) It works together with B12 . Your B12 readings may quite well be OK , but symptoms are the main criteria , not blood readings.

If your doctor will not give you extra B12 injections more often, do consider self-injecting. That’s what we have to do on this forum . You can inject by either the Intramuscular , or the subcutaneous method . It is possible to obtain B12 injections without prescription from Canada , and other countries . If you decide on that , you can get the information here.

Book called “ Could it be B12? “ by. nurse Sally Patchalok and her doctor husband Jeffrey Stuart ( American book) could be interesting for you .

Best wishes .

JMACCDADDY profile image
JMACCDADDY in reply towedgewood

Thank you for your comments . could you share the pharmacy that I need to buy it online from?

wedgewood profile image
wedgewood in reply toJMACCDADDY

It’s the middle of the night here in the U.K. I will have to look up information for you when I get up . Don’t want you to think that I’m ignoring you . I will get back to you with information .

Do you know what type of B12 you are having injected ? Is it Cynocobalamin, Hydroxocobalamin or Methylcobalamin?

Do you supplement with Folic acid or make sure that you that get plenty of folic acid in its natural form , when it is called folate and is found in green leafy vegetables ?

JMACCDADDY profile image
JMACCDADDY in reply towedgewood

it's Cynocobalamin.. I eat a lot of green vegetables.

JMACCDADDY profile image
JMACCDADDY in reply towedgewood

which B12 meds are better cyanocobalamin or methylcobalamin or Hydroxocobalamin?

Is it just an sign of general ageing? Oddly enough I have similar problems including Carpel Tunnel Symptoms that a recent surgical procedure has made worse. I was born in 1946 and so welcome reading other peoples comments. I receive my GP B12 every 8 weeks.

JMACCDADDY profile image
JMACCDADDY in reply toNorthallertonBob

Thank you for replying. I'm only 49 years old so if it's ageing I'm going in for a long tough ride.

BadHare profile image
BadHare

Try self injecting daily for a month then see how you feel. You might need less frequent once your B12 levels are your normal not the doctors’ chart normal.

JMACCDADDY profile image
JMACCDADDY in reply toBadHare

Thank you for your reply.. I've read that one dose a month isn't enough..

BadHare profile image
BadHare in reply toJMACCDADDY

Once a week isn’t enough if we need it!

JMACCDADDY profile image
JMACCDADDY in reply toBadHare

Do you mind me asking how often you're doing injections?

BadHare profile image
BadHare in reply toJMACCDADDY

Not at all!

I do a subcutaneous injection most days. Sometimes I miss the odd one or two then I take a sublingual methylcobalamin or do an intramuscular injection the day after. I use a 1/3rd of a vial of Pascoe hydroxycobalamin, approximately 500mcg.

JMACCDADDY profile image
JMACCDADDY in reply toBadHare

where do you get your hydroxycobalamin? also what's the difference in Cynocobalamin and hydroxycobalamin? is one better than the other?

BadHare profile image
BadHare in reply toJMACCDADDY

A German pharmacy. Pascoe has 1500mcg in 1ml vials. Cyanocobalamin is synthetic B12. It’s cheaper than but doesn’t work for me though some people can’t tell the difference.

Marz profile image
Marz

I am wondering if you have ruled out auto-immune thyroid with thorough testing ? As you may know PA is auto-immune and sometimes the two go together. Some of your symptoms do suggest low thyroid - especially when testing does not reveal anything significant. Thyroid hormones are needed in every one of the trillions of cells in your body - so it's important to have good T3 levels.

JMACCDADDY profile image
JMACCDADDY in reply toMarz

Thank you for replying. I've ruled out the diabetes for sure however I need to go back and look at the thyroid testing I had done

Marz profile image
Marz in reply toJMACCDADDY

Sadly the NHS Thyroid Testing is woefully inadequate 😥 I am a thyroid sufferer and frequent the Thyroid Forum TUK here on HU. TSH - FT4 - FT3 plus Anti-bodies TPO & Anti-Tg are the tests needed. Private testing available on-line - happy to help. 🌻

JMACCDADDY profile image
JMACCDADDY in reply toMarz

Marz are you in the US? also where can I get the private testing info?

Marz profile image
Marz in reply toJMACCDADDY

No - I am in the UK. Click onto my username that will take you to my Bio. Testing companies are detailed on the main website of Thyroid UK. I use Medichecks as do many others on the Forum....

Ooops ! Just realised you are in the US - apologies !

JMACCDADDY profile image
JMACCDADDY in reply toMarz

which B12 meds are better cyanocobalamin or methylcobalamin or Hydroxocobalamin?

Marz profile image
Marz in reply toJMACCDADDY

They all work differently in the body. Have a read around the Forum. My jabz are Hydroxycobalamin.

Bellabab profile image
Bellabab

The only other possibility is that you may have type 2 diabetes as the symptoms are very similar to B12 deficiency. A blood sample can test your HbA1C levels which gives you the average blood glucose levels for the last 3 months. "If you have diabetes, an ideal HbA1c level is 48mmol/mol (6.5%) or below. If you're at risk of developing type 2 diabetes, your target HbA1c level should be below 42mmol/mol (6%). On this page:

diabetes.org.uk/about-diabe.... go through what HbA1c means, and why aiming for your target level is so important." from this source:

JMACCDADDY profile image
JMACCDADDY in reply toBellabab

Thank you for replying. I've already ruled out diabetes.

Bellabab profile image
Bellabab in reply toJMACCDADDY

Thats good - many do not realise how similar they are.

JMACCDADDY profile image
JMACCDADDY in reply toBellabab

which B12 meds are better cyanocobalamin or methylcobalamin or Hydroxocobalamin?

Bellabab profile image
Bellabab in reply toJMACCDADDY

They are all good. Hydroxo is oft called a depot. Which means it is slowly released from the injection site. Hence its a good idea to try them all and see what is best for you. I use Pasco hydroxo 1.5 mg per ml and inject it into a muscle every third day. This saves me time, reduces injection scars and saves money.

B12life profile image
B12life

I'm in the United States too.

B12 online:: canadadrugsuperstore.com/

Get the 30ml bottles. Much cheaper.

They have needles too.

Warning: I prefer spring and fall to avoid exposure to extreme weather. I have had biles explode from freezing.

I use 25g 1" needles.

Hit us up in the forum for any tips you need.

I do daily injections and have since 2020. I tried spacing them out, and the symptoms come back.

I agree with the suggestion for thyroid testing. There is a thyroid forum that can tell you what to test for.

JMACCDADDY profile image
JMACCDADDY in reply toB12life

Thank you for your replying! I'll be in touch!

Hockey_player profile image
Hockey_player in reply toB12life

The vial size depends on how often you inject. The instructions say "Use withing 30 days of initial puncture". The 30ml is fine if you inject every day. I get 10ml and inject once per week. My pharmacist said unofficially that it probably would not hurt to use all 10 doses. But probably I should just use 4 doses and toss it. We are very careful with sanitizing and I think it is less risky at home than it would be in a place lots of people frequent. It only costs about $4 Canadian to get 10ml over the counter here. You can probably get the needles at a pharmacy in the US and maybe they would be less expensive that way?

JMACCDADDY profile image
JMACCDADDY in reply toHockey_player

thank you so much for your comments ., at this time I'm taking 1000 mcg/ which is 1ml per month and I inject at home as well.. According to what I'm hearing that's not much??

Hockey_player profile image
Hockey_player in reply toJMACCDADDY

Some people on this forum inject every day and others seem to need several injections per day. We are all different. The best way to monitor things is by your symptoms. Ideally, all the symptoms will go away and will not come back before the next injection. I inject the same amount as you but once per week instead of once per month. My toes start feeling tingly after about 3 weeks.

JMACCDADDY profile image
JMACCDADDY in reply toB12life

thank you so much ., at this time I'm taking 1000 mcg/ which is 1ml per month and I inject at home as well.. According to what I'm hearing that's not much??

JMACCDADDY profile image
JMACCDADDY in reply toB12life

how much do you inject each day?

Hockey_player profile image
Hockey_player

Lots of us need injections more than once per month. Your doctor should know that testing B12 makes no sense and will not give meaningful data if you are getting injections. It would do no harm to do injections at least every other day for awhile. You have so many symptoms that could arise because of not enough B12. Once the symptoms are gone, you need to find a schedule that keeps all those symptoms at bay. If you are getting injections that often, it is more convenient to self-inject. There is lots of info on this forum about that. I hope you get feeling better soon! The fatigue, brain fuzz, and tingles are no fun at all. You may find that B12 gets rid of most but not every symptom. If there is one thing left (e.g. shortness of breath or something) it would give doctors more focus to try to figure out what is wrong instead of this whole mash of symptoms.

JMACCDADDY profile image
JMACCDADDY in reply toHockey_player

which B12 meds are better cyanocobalamin or methylcobalamin or Hydroxocobalamin?

Hockey_player profile image
Hockey_player in reply toJMACCDADDY

The ones you can obtain easily and are not allergic to. I can get injectable cyanocobalamin over the counter here (In BC, Canada) without a prescription, and one dose costs less than a cup of coffee. I have seen studies that hydroxocobalamin maybe be excreted more slowly. So maybe people need cyanocobalamin injections a bit more often.

Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum.

I'm in UK, some links I post may have info that is specific to UK.

"I did mention to one of my DR i think it be B12 but they said my levels were fine.. "

Many forum members here have reported that their doctors had limited understanding of B12 deficiency.

Wrong ideas about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/engli...

B12 Institute in Netherlands have a useful article on problems with diagnosis/treatment.

b12-institute.nl/en/diagnos...

It's possible to have severe B12 deficiency with normal range serum B12. See UK blog post below. Some of the info may be specific to UK.

b12info.com/your-serum-b12-...

Has your doctor looked into "Functional B12 deficiency"?

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so person develops B12 deficiency symptoms.

MMA, homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose functional B12 deficiency.

Thread about tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

This thread I started might be of interest.

Is there a link between functional B12 deficiency and functional B2 (riboflavin) deficiency?

healthunlocked.com/pasoc/po...

Useful info for doctors

1) PAS (Pernicious Anaemia Society) website has a page for health professionals.

They can join PAS as healthcare affiliate members, no charge. PAS welcome health professionals from across the world.

pernicious-anaemia-society....

PAS have webinars on aspects of PA and B12 deficiency.

pernicious-anaemia-society....

PAS have conferences every few years.

pernicious-anaemia-society....

2) Has your doctor heard about CluB-12?

club-12.org/

It's a group of doctors and researchers from across the world who are looking into B12.

They have regular zoom meetings and have hosted a conference in UK.

The website mentions a conference in France in 2025.

3) Good articles to pass to doctors

B. Wolffenbuttel wrote an article for PAS in Jan 2024.

Only One Chance

pernicious-anaemia-society....

Search for "Wolffenbuttel B12 deficiency" to find other articles he's written, including one for Mayo Clinic in US and one for BMJ (British Medical Journal).

His most recent article is an overview of B12 deficiency treatment.

Search for "Wolffenbuttel 2024 overview B12 deficiency" to find it.

In my personal opinion he's one of the few doctors who understands B12 deficiency.

4) B12d.org have online talks about B12 deficiency.

b12d.org/event/

These websites may be worth looking at.

Pernicious Anaemia Society

Based in UK but they have some US members. PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS have a support group in USA. This group have an online meeting on 22nd March.

pernicious-anaemia-society....

Some of the people who've posted Personal Stories on PAS website are from US.

pernicious-anaemia-society....

Other B12 websites

B12 Awareness

b12awareness.org/

Set up by Sally Pacholok, US campaigner on B12 deficiency issues.

She has some online articles and videos about b12 deficiency.

B12info.com

b12info.com/

Set up by Tracey Witty, a UK campaigner on B12 deficiency issues.

B12d.org (UK charity)

Has online talks about B12 deficiency.

b12d.org/event/

The B12 Society (UK charity)

theb12society.com/

Might be worth you searching forum posts with "US/USA/America" to find other threads from US forum members.

I'm not medically trained.

JMACCDADDY profile image
JMACCDADDY in reply toSleepybunny

Thank you so much for the info.. just wondering what do you know about consuming alcohol, and having pernicious anemia?

BadHare profile image
BadHare in reply toJMACCDADDY

I think alcohol depleted B vitamins in general as they’re water soluble, especially B1. We pee most B vits out within 24 hours of consumption. Lots online: pmc.ncbi.nlm.nih.gov/articl...

JMACCDADDY profile image
JMACCDADDY in reply toSleepybunny

which B12 meds are better cyanocobalamin or methylcobalamin or Hydroxocobalamin?

Sleepybunny profile image
Sleepybunny in reply toJMACCDADDY

Hi,

I think that very much depends on the individual.

I know there are some forum members who report they do better on one particular form of B12 injection than the others.

I don't think adenosylcobalamin is available in injectable form.

jillcur39 profile image
jillcur39

Perhaps you are not getting enough B12 - the length between injections can change over time so get that checked out. Hope this helps.

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