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Pernicious Anaemia Society

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What do you think? Advice please new to this.

Tellingbones profile image
12 Replies

Hi everyone,

I’m new here because I honestly don’t know where to turn and need to hear from other people re my situation. About 5-7 years ago I had a colonoscopy/gastroscopy as they were looking for cancer etc as my iron was low. At the time after procedure I was told that my stomach lining was eating itself and there wasn’t much they could do. My gp didn’t follow up so I just kept going on my merry way. Fast forward to last year when new gp from same practice gave me blood test (I have had my thyroid removed so regular blood tests) when the result came back she was horrified as my iron was so low she couldn’t; understand how I was functioning. So she sent me for a pelvic ultrasound, colonoscopy/gastroscopy and suggested iron infusion. The dr at hospital said if I wasn’t tired there was no need to do the infusion. Yesterday I got a phone call from hospital and was told i had pernicious anaemia and I’d had it since my last colonoscopy/gastroscopy!!!! This was news to me- I’d had no symptoms whatsoever and was walking 10km a day for almost year when covid first hit. Hospital dr said she will run all blood tests again and then meet with me after that and I will need infusions for the rest of my life.

Naturally I’m confused and been trying to read up on this condition.

Anyone have advice or experiences to share I’d be greatful.

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Tellingbones
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12 Replies
LadyBothwell profile image
LadyBothwell

Hello Pernicious anaemia relates to low b12 and iron deficiency anaemia relates it low iron. They are different things but it is possible to have both. You will need to talk to your gp when you get your results. PA will require lifelong treatment with B12 supplementation usually by injection. IDA is usually treatable with tablets periodically but may require infusions, You should look at posts by sleepy bunny and and join the pernicious anaemia society who have a wealth of info, sadly many gps are not very knowledgeable about PA and many people are under treated so try to read up as much as possible before your appointment! And don’t be afraid to question them and come back here for more support and clarity!

Tellingbones profile image
Tellingbones in reply to LadyBothwell

thanks LadyBothwell the hospital dr said i have pernicious anaemia and that I will need injections. She said it was confirmed last time (but no one told me!!!) so its been untreated for years. Plus I have had no symptoms I don’t understand how if left untreated I’d be ok and functioning as well as I have. My blood test pre the second gastro/colonoscopy the hb was 9 - guess I just wait and have the next blood test.

Gambit62 profile image
Gambit62Administrator in reply to Tellingbones

the body stores quite a lot of B12 in the liver and it can take years or even decades for PA to actually manifest as a B12 deficiency - which is what leads to the symptoms. Once the damage caused by PA gets severe though the symptoms start to snow ball.If you have a thyroid problem it is possible that you may have had symptoms but put them down to thyroid.

PA is an autoimmune disorder so if the thyroid removal was related to auto-immune disorders then that would be par for the course - over half of PA patients also develop thyroid problems.

The damage caused by PA can also affect absorption of other vitamins and minerals - most commonly folate and iron.

Tellingbones profile image
Tellingbones in reply to Gambit62

ok but apparently I had it 7 years ago and no one told me (which is annoying for starters and incompetent really). I’ve had no symptoms during that time. I have no symptoms now., but I’m starting to question everything. My thyroid was removed way before any of this came up. I guess I’m trying to learn about pa and wondering do i really need injections…and working out what I should ask drs once I have these next blood tests.

Gambit62 profile image
Gambit62Administrator in reply to Tellingbones

I think you should talk to the specialist about the result of the blood tests. Testing after you start injections isn't an effective way of managing PA - looking at symptoms is better. You could wait until you become symptomatic before starting injections if that suits you better - and you could try high dose oral as well.

To be honest - most GPs have little or no training in vitamin deficiencies - may be half a day in the course of their training - so knowledge levels are extremely poor

Tellingbones profile image
Tellingbones in reply to Gambit62

Thanks Gambit that’s how I was thinking also. I feel like they have freaked out without caring that I have no symptoms. 🤷🏻‍♀️

TorontoIslander profile image
TorontoIslander

Dear Tellingbones:

In 2014 my blood work before a hip revision showed very low hemoglobin levels as well as PA, I had just turn 60. I've been on B-12 injections and iron pills ever since, but I have to say most GP's don't know much about the condition, so it's important to read as much as you can and if you feel the need get into see a Hematologist. At precent, I myself am feeling cold all the time with a body temperature of 1 to2 degrees below normal, so I'll be seeing a Hematologist as soon as my GP can make a referral. It's important to know your body and find the appropriate care you need.

BarryBuchy profile image
BarryBuchy in reply to TorontoIslander

Try injecting every other day and monitor the results.

Tellingbones profile image
Tellingbones

Thanks TorontoIslander- the whole medical system here (Australia) is not functioning well due to Covid. Everything takes so much longer etc. OK I will research as much as I can prior to talking to them. Thanks everyone!

Sleepybunny profile image
Sleepybunny

Hi,

Some links that may be useful .....

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

Membership of PAS is separate to membership of this forum.

Testing for PA

pernicious-anaemia-society....

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.

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

Gastrin test

labtestsonline.org.uk/tests...

I've also read that a pepsinogen test may help to diagnose PA.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

Has some useful symptoms/causes lists.

b12-institute.nl/en/home-2/

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

Misconceptions (wrong ideas) about B12 deficiency

B12 deficiency is not always as well understood as it should be among health professionals.

Units, ref ranges, treatment patterns mentioned in articles below may vary from your country.

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website)

stichtingb12tekort.nl/engli...

UK blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands )

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

Documents

I suggest you try to find out any national or regional documents for your country on treating B12 deficiency. I did find a Queensland document when I searched online.

Symptoms

"I’ve had no symptoms during that time. I have no symptoms now"

Have a look at these symptoms lists.

Some forum members find that when they start researching PA and B12 deficiency, they have more B12 deficiency symptoms than they thought.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

I am not medically trained.

Good luck with getting the treatment you need.

There are other forum members from Australia on the forum so may be worth searching forum posts with term "Australia" to find their posts.

May also be useful to put your country in title of threads you start.

Tellingbones profile image
Tellingbones in reply to Sleepybunny

Thanks so much Sleepybunny I haven’t been able to get my blood test done because bingo I have Covid at moment 😢

Sleepybunny profile image
Sleepybunny in reply to Tellingbones

Sorry to read that you've got Covid,I hope you recover quickly.

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