Pernicious Anaemia Society

Hemochromatosis and PA

Hi all, earlier on this year I watched an episode of Doctor in the house, where a young man had been suffering from various problems and was never in I think, 16 years diagnosed correctly by his Doctors. It turned out he was deficient in B12 and after taking B12 was soon getting his life back. This spurred me on to try B12 supplements which have worked well. I should see my own useless doctors and ask for tests but wondered how long I should stop the supplements for before I ask. My father told me he had familial hemochromatosis and also had Pernicious anaemia, but died 12 years ago aged 75 my mother who is 90 next month has PA and is injected every couple of months. Is there any way I could have inherited the PA?? Reading the symptoms i feel would account for many of my ills

I could keep writing but don't want to bore you all. Many thanks for any insight you may have.

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Hi Jointpain,

I hope you get the help you need.

Is your GP aware of your family medical history? Have you been tested for haemachromatosis and PA?

Here's some links about PA and B12 deficiency that may be useful.

B12 Deficiency Symptoms lists

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Are you symptomatic for B12 deficiency?

Risk Factors for B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

I have read that having a blood relative with PA can increase the chances of developing PA.

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"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 book about B12 deficiency with lots of case studies.

PAS (Pernicious Anaemia Society)

PAS can offer support and info about PA.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

UK B12 documents/articles

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA or Antibody Negative PA can be diagnosed in UK.

BNF British National Formulary Chapter 9 Section 1.2

UK GPs will probably have a copy of BNF on desk.

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

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

Outlines recommended UK B12 treatment. Treatment info is also in BSH Cobalamin and Folate Guidelines.

UK B12 blogs

Martyn Hooper's blog about PA and B12 issues

martynhooper.com/

Also an interesting blog about B12 on "B12 Deficiency Info" website.

b12deficiency.info/

Lots more B12 info in pinned posts on this forum.

There is a UK charity "The Haemachromatosis Society".

haemochromatosis.org.uk/hae...

I am not medically trained.

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Reply

Hemochromatosis is almost always genetic in cause, though it does not mean you have it, but your are more likely to than most. PA appears to arise due to a combination of environment and genetics. So it can run in families but is less likely to than hemochromatosis.

How long can B12 supplements effect a B12 test? It depends a lot on how strong your supplements are and the severity of your B12 malabsorption. If they are in the order of a few ug than probably a few weeks. If they are mgs than maybe months but it depends on your severity of your deficiency. Also there is no guarantee that the normal B12 assay will pick it up as about ~10% of people who suffer B12 deficiency have a normal in range B12 result.

MMA and homocysteine tests are better at picking up a B12 deficiency but they are more difficult tests and of course B12 supplements will mean you will most probably get back a normal result.

Maybe the best course of action is to write down how your symptoms have changed when you took B12 and what symptoms remain. Then try a few days without B12, again note down the changes and see your doctor.

Don't forget the slight possibility you have both, as there is some overlap in symptoms. Though B12 deficiency takes awhile to treat properly so even if supplements don't solve all your symptoms they may be because it takes time and PA can mean that oral supplements are very poorly absorbed.

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Thank you both very much for the information. I will carry on with the tablets until December and see my Dr then. I remember my mother said her mother had PA and had to eat raw liver!

She also poo pooed my Father saying it was impossible to be diagnosed with both PA and Hemochromatosis at the same time.

I have now been back on b12 tablets for four days and feeling so much more alive, even slept soundly all last night, and no back pain or cold extremities.

Thanks again Steve.

Reply

Hi jointpain

Just so you know you're not alone, I have diagnosed PA (anti-IF antibody positive) and a form of haemochromatosis. The latter isn't full-blows and I control it with diet but I believe the former was inherited from my Dad, who also had it. It sounds like you've got PA/B12 deficiency in your family at least back to your grandmother so follow the advice of the others and see how you go with your doc. All the best!

Reply

Hi there jointpain,

You certainly can have both. I have B12def with a level of 141 at diagnosis and also genetic haemochromatosis. For me, the haemo has masked things to a degree because the ferritin remained within 'normal' levels. Interestingly though I have not required venesection for 5yrs, where previously I always needed one every couple of months without fail. They ignored this as a sign that something was wrong though and I couldn't convince them.

I too supplemented for years on my own but ultimately to get properly diagnosed they do need to be out of your system. I would have thought that if its tablets you're taking it shouldn't take too long as you may not be absorbing it all anyway (?), I would go as long as you can but don't let yourself get too ill.

Keep us posted and good luck!

Drumstix 😃

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