Pernicious Anemia? Body deteriorating... - Pernicious Anaemi...

Pernicious Anaemia Society
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Pernicious Anemia? Body deteriorating fast

Hi guys, my body feels like complete shit. Symptoms:

When I come in contact with cold temperatures or sometimes randomly, I find body parts like face and extremities tingle.

My body parts BURN and heat up so bad, currently my hand is bright red and hurts, the veins are popping out like mad, this happens in the ears, feets, hands, and my nose. Usually if my feet flare up my legs hurt too although my legs don't go red they feel like they have pressure, they tingle now and then too. I can't sleep with a duvet because I get hot too easily even when it is <10 degrees celsius in the room. My body thermostat is gone bonkers. I seem to sweat very easily.

I get head pressure, sometimes my body randomly jolts, happens when I lay down at night.

These symptoms have been getting worse over the couple years to the point that I feel suicidal. I cry and feel depressed because the pain, redness, and embarrassment is too much.

I got tested (FBE, ESR, B12/folate, anti instrinsic factor antibodies) a couple days ago and currently awaiting results ... I hope they come back positive and it would explain this problem so I can fix this. I eat meat and vegetables pretty much everyday.

I got tested last September when the symptoms weren't so bad, results are in the image.

Active B12 shows deficiency in the report but I never took any medication, was this medical negligence?

43 Replies
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I'm no expert but even at 229 that's low. The high ish folate could be masking things. Do you have the lab ranges?

I also had those symptoms you describe. But I don't have an official diagnosis. I was not getting anywhere with the NHS. So started to wing it and treat myself. My level was at 108. I was left untreated from pre. 2014 and I think so much damage has been done. Lots of great people on here who will advise you.

", sometimes my body randomly jolts, happens when I lay down at night."

This happens to me often just as your about to fall asleep.

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Hi! I have uploaded an image of the results in the main post if you would like to see. Have you got treatment? How are your symptoms now?

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I have only just started down this road it's not a quick fix. I've been injecting since 16 of June. Whilst somethings have eased new things have arrived. It gets worse before it starts improving. Roller-coaster ride. I've cried everyday for four years. Click on my name and read my story.

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Wow what a journey! I feel for your situation, lets hope we both achieve positive results in the near future. Doctors should take this more seriously, I seriously hope my problems are reversible, my nervous system is completely broken.

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When did you first recognise your symptoms? Can you think back?

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It started end of 2016/beginning of 2017. Each year it has progressively gotten worse. My body flares up more, tingles are more. My sleep started to become affected July of 2018, I can no longer sleep with a duvet as my body becomes too hot like a furnace.

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So a few years. You will have to wait until your test results come back, chances are they will be low again. I hope you get sorted. If it is b12 deficiency remember it could be a long process to get well.

And some times things get worse once treatment starts.

How is your iron levels?

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Yep, best to get treatment now before it gets any worse, I couldn't live if it got any worse, it's already taken over my life. Iron - 18.1 umol/L (Range is 10-30). Transferrin - 2.50 g/L (Range is 2.10-3.80). Saturation - 29% (Range is 15-50). Ferritin - 65 ug/L (Range is 30 - 500).

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Ferritin on the low side for a male it should be above 100. You could still get fatigue and other issues. Where in oz are you.?

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Damn thanks for telling me, seems like my body isn't digesting / utilizing things properly :( .I'm in Melbourne but from the UK, I presume you live there?

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Yes I'm in East Yorkshire. Hull.

Must be getting late there. Some people have quick recovery, some don't. I hope you get everything sorted. Please keep updating.

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Hmm nice! By the coast, me too. I originally lived in Southampton, quite the distance from Hull. I will keep you guys updated, definitely!! Didn't know there was such an online active community!

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Yes and lots of good people on it too.

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Absolutely negligence are you in Australia by any chance as your lab results look familiar, you should have been put straight on b12 injections and PA test should have been ordered straight away in sept aswell, you need all vitamins levels checked aswell, your active b12 is very low, my daughter's b12 was 151 and active 67 same ranges as per your lab sheet, doct tested her instrinsic factor straight away as well as all vitamins, she was started on 6 loading injections over 2 weeks then 3 monthly, instrinsic test came back positive on partiel cell antibody.

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Yep I am a 20yo male in Australia. My ex-GP just brushed over b12, didn't seem too interested in it and didn't do anything about it. The only other thing I was deficient in was vitamin D at 32 nmol/L, is b12 and Vit D correlated? How is your daughter now? Are the shots working? Terrible thing to be suffering from.

Thankfully my current GP seems to be more interested in this and is more focused on helping. Will find out results from the new test tomorrow or Monday.

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Yes my daughter was diagnosed aug last year, her b12 good now and continues with 3 monthly injections, make sure you get full iron studies done aswell, my daughter is only 14 but struggles to get iron up, so she definitely has absorption problem within stomach, get tested for celiac aswell as full thyroid check as autoimmune diseases sometimes come in pairs, her thyroid good, mine not, so if a family history there definitely have that checked aswell, her vit D was ok but having absorption problem will effect all vitamins so just insist on all, all the best as you being so young as well as my daughter should not be going through this, im glad you have a better gp, total b12 is the amount your body is storing the fact that your active is so low is what alarms me the doct did nothing, makes me mad

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I'm happy she is getting treatment. Were her symptoms bad/worrisome? It's fascinating and scary how much this can affect people. When I see my GP again I will go over other tests, thank you for the advice on that.

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Her symptons were mainly tiredness but at one point became delirious and found it hard to walk, was like she was drunk, she was pale, very thin and suffered with headaches and chest pain aswell as a sore stomach all the time, im just so glad i had a very thorough gp at the time, but shes definitely a happier person, she was so down all the time and would go straight to bed after school, i knew something wasn't right, when you get treatment make sure vitamins are re tested around 3 months on as b12 injections can deplete potassium which i was unaware of until finding this site and when they do te test b12 make sure its b12 studies not just b12 as your levels will be higher after injections, you want to make sure the active is increasing, ive had 2 gp now not listen and just test her b12 which is completely useless after injections unless you testing full studies, good luck i will follow your post as interested to see how you go!

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Hmm interesting, sad to hear she went through that. I will make sure my vitamins are tested and re-tested in 3 months, thanks for all the tips. Thanks for following! I will update you and this community when I feel things changing. Hoping for the best and I wish your daughter a healthy and beautiful life.

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Thankyou yes she was fine on injections but as others will let you know on here sometimes symptons will get worse before better, i myself did not tolerate injections well so see what your results say and go from there, on your gp advice but if you have had no treatment since sept then i would think they may be even lower hence why your symptoms getting worse, i never knew what b12 was until now but its a major thing we require to survive, doctors are not very educated on it from my personal experience, also if you do have an absorption problem and dont want injections then woolworths sell a blackmores b12 rapid melt tablet which is an active form that goes under tongue and dissolves directly into blood stream bypassing the stomach, but these will take longer to get levels up than injections, just some advice, hope it helps. Good luck

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Alright thanks, what made you not tolerate them? Was it because the b12 deficiency symptoms became temporarily worse or did they cause new problems? I too did not know how important b12 is in the human body up until a few weeks back or so, hence i'm here with you guys and getting tested and will be treated next week. Looking forward to the results :D

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I dont know why, my store levels were low, my active was ok, i only had tiredness before my injections then suffered pretty bad side effects from injections, if you look through my page you can see my previous posts, dont want to scare you off them, as i said my daughter was fine with them, but my body didnt like them.

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Interesting, I will talk to my doctor about treatment, from research it seems injections are best for deficiency if one can cope with them.

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Yes i think in your case as Gambit62 as stated with your neurological symptons, best of luck

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Hi again! Quick question, how are the Blackmores B12 Rapi-Melt 1000mcg? Are they any good? Do you notice a difference with them?

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I only take every now and then and i seem to be able to tolerate this form of b12, but couldn't tell you whether i notice a difference but i dont get side effects from these, as there are around 3 different forms i think of b12, which i was unaware of aswell until visiting this site.

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can you send me a link please to info about B12 depleting potassium? I've started with heart arrhythmia which is triggered by low potassium and have to eat very rich potassium foods to keep this at bay never thought my B12 injections were linked be grateful for link to info please

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I dont have a link of such and am not medically qualified but have read alot on this forum time and time again about the importance of monitoring folate and potassium whilst on b12, someone more educated on this may be able to help

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Thank you

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Hi rosyG I've recently developed heart arrhythmia, plus a leaky mitral valve, and been put on Bisoprolol Fumarate. Thanks for the warning about potassium. Going for heart stress test soon. Been on B12 injections (self administered) from every 3 months initially, then discovered this awesome site and managed to get old GP to up it to every 2 months but still had massive deficiency symptoms so started giving myself injections every week or two. That was about 6 years ago. I'm 64 and have autoimmune issues like Fibromyalgia, Sjogrens Syndrome and Hypothyroid. My energy is so low I can't do much at all, but at least the worst neurological B12 deficiency symptoms have gone. Good luck with your ticker :)

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Hi

Jacket potato gives almost a1/4 of4500MG needed daily. Salmon, tomatoes, bananas, kale , coconut waters are also good! Havea look at AF unlocked ifyou don’t already!

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Is there anything else I should get tested for when I go see him again on Monday? Currently I have on list: Celiac, all vitamins and minerals, thyroid.

Last September and a few months ago my ANA comes up as: '1:160 Speckled', is this relevant? Last September my TSH was 2.81mIU/L.

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Not sure about ana, mine was 320 which apparently was nearly double what it should be but my doct put that down to my thyroid antibodies, im pretty sure a higher than normal ana means inflammation somewhere in body, are you going to same clinic so doct can look at previous results? If not maybe just take copies of them with you.

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Yes it is the same clinic but a different GP, he has access to all my records. I feel like that 160 ANA is telling me something but the doctors and I don't know what yet until perhaps the result of the PA test comes back.

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I think you will know more once you get results, i definitely think you need b12 treatment asap, good luck

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Definitely, I have recently developed in the past week vertigo/dizziness, weakness, and cuts in the corner of mouth, I can’t sleep without feeling weird pressure in my head 😭, I can’t wait for Monday, every day is so important right now

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All the best its not nice feeling unwell all the time, but there is heaps of support on here so you know your not alone, this site definitely helped me in times of despair.

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Yes, you should have been treated so certainly not good medical practice.

You need to be put on an aggressive course of loading doses, given that you have serious neurological issues (and neuropsychiatric issues).

protocols vary from country to country but if you are in the UK you the protocol is loading shots 3xweekly until your symptoms stop improving followed by maintenance doses every 2 months - though you may well need maintenance doses more frequently. UK uses hydroxocobalamin

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Hi,

Some B12 links that may be of interest.

Some info may be specific to UK so units of measurement/ranges etc may not be the same as in Australia.

Might be worth finding out if there are national or regional guidelines for your part of Australia, on the treatment of b12 deficiency .

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

In UK, guidelines suggest anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac (spelt Celiac in US) disease.

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

H Pylori infection

patient.info/digestive-heal...

Nitrous Oxide

gov.uk/drug-safety-update/n...

Any possibility of internal parasites eg fish tapeworm? Do you ever eat raw fish? Giardia Lamblia is another parasite that can be associated with B12 deficiency.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

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). Book does not show updated BNF info.

"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.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society.... See Page 2 of articles.

UK B12 documents

Not sure if you'll be able to access these if not in UK but may be of interest if you can. Units of measurement/ranges may be different to those in Australia.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

cks.nice.org.uk/anaemia-b12...

I am not medically trained.

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I’m in US and wondering what is test for Active B12? They only test b12 here. I asked doc if there was a test to see if b12 getting into cells and she said no. I’m on bi monthly shots and my once a year blood test for b12 is always around 400. Which this group says testing after therapy is useless.

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Yep, testing for b12 is pointless, you have to test active b12. The majority of vitamin B12 that is measured by the Total B12 test is bound to haptocorrin, but B12 attached to haptocorrin cannot be used by the vast majority of the cells of the body.

Only B12 bound to transcobalamin, Holotranscobalamin or Active-B12, is taken up from the blood into the cells of the body. This is what you want to test.

This website is an interesting read for Active-B12: active-b12.com/laboratory-d...

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I’m following this thread

I’m also in the US. I am new to this I am new to this website not really sure how to maneuver through it. are you talking about the holo tc test.

My B12 is always 2000 serum test. And always a little anemic. (I have absorption issues. High bacteria levels in stomach etc. )

So the doctors tell me I have plenty of B 12 stored yet I have so much bone pain muscle pain can’t hardly walk anymore. Numbness feet hands whole body burns tingle.

Spine issues etc.

I’ve read that B12 deficiency can cause myelopathy in the spine. Which I’m having a lot of Spinal degenerative issues.

Can’t exercise. It Increases my bone pain I’ve just about become an invalid

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Τake b12

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