So what IT will be in the future

[Hugo17776]

Hello, Iam new here. Iam from Slovakia and Been recently diagnosed with PA. That is Okey I have two little children common life as aby other human being. I am a nurse at operating Room. I just wonder about my future and about my kids. I found out that this IS autosome recesive hereditary disease. Hope my husband don't have the wrong gene AS me. So than my children will be just carer of the gene. I just wonder how kong life expectancy I have. Have long do tou live with your disease Can we live long or ... I know that IT Can be Higher risk of carcinoma but in my work i have Seen carncer in All Ages group, without predisposition so I just think risk have everyone.

[Sleepybunny]

Hi Hugo17776,

Welcome to the forum.

Here's a few links about PA and B12 deficiency that might be helpful.

Some links may have details that could be upsetting.

Two useful B12 books

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

Martyn Hooper started 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. This book is available in some European languages.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is open to people worldwide.

pernicious-anaemia-society....

B12info.com

b12info.com/

Above website is run by a UK campaigner on B12 deficiency issues.

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

Has useful lists of causes and symptoms

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

If you have time, try to find out if your country has any national or regional guidelines on treating PA and B12 deficiency.

I'm not medically trained, just someone who suffered for years from undiagnosed B12 deficiency.

[Sleepybunny in reply to Sleepybunny]

List of European Haematology Societies

(mentions a Slovakian society)

They may publish guidelines on treating B12 deficiency.

ehaweb.org/organization/par...

Films about PA and B12 deficiency

b12info.com/films/

pernicious-anaemia-society....

[wedgewood]

You must NOT worry about having Pernicious Anaemia. As long as you get sufficient B12 injections to keep symptoms at bay and take a modest B9 ( folic acid ) tablet daily You will be fine and will lead a normal life .

If you doctor doesn’t allow you sufficient B12 injections, you can obtain B12 ampoules ( both Hydroxocobalamin and Cynocobalamin ) from certain German online pharmacies who will deliver to Slovakia .

[WIZARD6787 in reply to wedgewood]

>>As long as you get sufficient B12 injections to keep symptoms at bay and take a modest B9 ( folic acid ) tablet daily You will be fine and will lead a normal life .

That is a bold prognosis! I agree with you that may be true I do not accept it as a fact. In fact your prognosis has been disproved by many who post here.

There is also the complication of that some of us need 10 mg a day to live anywhere near a normal life. Some need D3 and K2. Some need B6 etc.

Consider using I statements to allow those different than you not to be excluded. Problem for you may be solved it does not follow it is solved for anyone else.

[Hugo17776 in reply to WIZARD6787]

How people Can live with this disease?

[Hugo17776 in reply to Hugo17776]

I mean how long

[Swift20 in reply to Hugo17776]

My dad’s uncle had it and my dad has it. My dad is 70 and does decent with his monthly shot. I say decent because most of my life we could tell one week before his shot as he would get a temper. I was never tested properly but I clearly have PA but my brother doesn’t and none of my dad’s siblings got it. I do daily injections right now but also have other issues which I believe makes me use up my b12 more. So we’re all different.

Hope that helps.

[WIZARD6787 in reply to Hugo17776]

I have been active on this forum for close to a year and life expectancy has never been brought up. Not saying you should not be concerned.

Pretty much life expectancy is not a consideration in the study of PA and the prognosis is considered good.

The figuring out how to self treat is a challenge unless you fall into the group where successful treatment is more in line with current medicial understanding. Hopefully and likely you are in that group. You are in the right place to find out.

[wedgewood in reply to WIZARD6787]

I directed my reply to that particular member , not the whole of the Pernicious Anaemia community. Please think of the context in which I answered the post . This is someone who has just had a diagnosis of Pernicious Anaemia Probably looked up the meaning of “ Pernicious “ and found it means DEADLY! Shock horror ! But we all know that with timely treatment this condition is no longer deadly . The questioner has given no indication of serious symptoms . From the tone of the post , that member is really worried about the diagnosis . So I see nothing wrong at all in writing that they should not worry , and just make sure that they get adequate B12 and folate .

I see no point in being alarmist .

I had very delayed treatment which has left me with a difficult irreversible symptom . But I have reached the age of 87. I am lucky enough not to have any other health conditions . But I do know that a swiftly and adequately treated Pernicious Anaemia with adequate life-long injections , will allow the patient to lead a normal life with the expectancy of a normal life span . . So no point in being alarmist …….. So you choose to disagree with me .. Well you had better answer Hugo17776 with a better reply …

[WIZARD6787 in reply to wedgewood]

Hey Wedgewood,

I believed in the non-alarmist for 2 years 8 months. My responsibility for believing. I will never have those years back.

Good news is I will not have the permanent damage that was predicted.

[Technoid in reply to WIZARD6787]

The member asked about Life Expectancy, not quality of life, or "health span", which are different things. There is no difference to life expectancy, provided B12 is treated adequately. Health span and quality of life of course may be substantially affected depending on for how long adequate treatment was delayed and severity of neurological damage incurred in that time.

[Hugo17776 in reply to Technoid]

Thanks you so much

[Hugo17776]

Thanks you

[Sleepybunny]

Your doctors might be interested in links below.

1) PAS website has a page for health professionals. Some of the info may be specific to UK.

Health professionals can join PAS as associate members, no charge.

pernicious-anaemia-society....

As far as I know this applies to non UK health professionals as well but contact PAS to check.

pernicious-anaemia-society....

2) Has your doctor heard of Club B12?

club-12.org/

This is a worldwide group of researchers and doctors who are looking into B12.

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

PAS are always happy to hear from people who want to set up a PAS support group. There are several in UK and one in USA.

pernicious-anaemia-society....

[Litatamon]

Hi Hugo,

This does not affect the number of years one lives, when it is found and consistent b12 supplementation exists. It was named 'pernicious' because many many decades ago they did not have a solution for the patient. And way back then it was deadly. But not now. One can live a long life, no different in years.

It is actually a positive that it was found by your doctor. When it is not found is when people can really suffer long term. Suffer more with symptoms getting worse or acquiring more symptoms & sometimes get a misdiagnosis.

Or told that it is all in one's head, when it is not.

So although no one wants Pernicious Anemia, it is good that you know that is your issue, so you can treat it well - and educate yourself beyond your doctor- to live your best life possible.

All the best to you going forward.

[Hockey_player]

You can have a completely normal life as long as you get enough B12. For lots of people, that means getting regular injections. I don't think there is a very strong hereditary link for PA. There is some correlation for relatives getting it but it is not clear that genetics is the only cause.

[Blueoxo]

Hi Hugo, my dad, my daughter and I all have pernicious anemia. We have injections of B12 every 8 weeks and this seems to work well for all of us. My dad is 82 years old and has a good quality of life, he went dancing on a regular basis up until very recently, but had to stop recently due to other reasons. In my experience you can have a fairly normal life, but we are all different and it takes time to work out how often you need an injection of B12. It can also take a while before you start to feel back to normal. Some people do experience ongoing symptoms but this is not the case for everyone. Pernicious anemia is no longer a fatal disease. I see members have put on useful links where you will be able to get lots of information. Good luck with your recovery, hopefully you will start to feel better soon

[Marz in reply to Blueoxo]

Have just noticed your post on the Fibro Forum highlighting B12. Sadly no Replies. Do hope your post remains so others can learn valuable information.

I see you also have a thyroid issue. Many of us post here and on the Thyroid UK Forum. As well as B12 helping your Fibro symptoms - optimal levels of thyroid hormones are needed, especially T3 - which is very rarely tested in the NHS.

I was diagnosed with Fibro in 2000 and Hashimotos in 2005 and like PA Hashimotos is also auto-immune. More info on my Bio.

Happy to help 🌻

[Blueoxo]

Hi Hugo, very interesting isn’t it. I have an annual blood test for the Thyroid but wasn’t aware T3 levels weren’t part of this. Can you ask your GP to test for this or would you need to go private?

[Marz in reply to Blueoxo]

From reading on the Thyroid UK Forum since 2011 it is clear that mostly TSH is tested - a Pituitary Hormone. Occasionally but rarely the FT4 and almost never the FT3. Anti- bodies TPO & Tg should also be tested to rule out Hashimotos. Private testing available on-line - details on the main TUK website as well as the TUK Forum here on HU. Monitor My Health is a Private Lab within a NHS hospital in Exeter !

Testing Folate - Ferritin - VitD is slso important when Hypo for good conversion of T4 into the ACTIVE T3.

You are legally entitled to have copies of test results with ranges from your GP. You can also arrange access to your records with the surgery. Important to check what has been tested and more importantly what has been missed !

[Blueoxo]

hi Hugo, many thanks, that is really useful information. Both myself and my dad have Hashinotos, Pernicious Anemia and Myasthenia Gravis, the latter I was diagnosed and then undiagnosed as a false positive 🤷‍♀️. I guess Autoimmune conditions definitely run in families. My daughter has pernicious anemia and my son, vitiligo and we both have fibromyalgia. I will be mentioning to my son to try B12 injections to see if this help him