Has anyone else been diagnosed with PA at the age of 19?

[Dakota17777]

I was diagnosed with Pernicious Anemia at the age of 19 and I had all of the tests done such as colonoscopy and endoscopy and other blood tests and nothing came back positive. My doctor stated that I simply have PA and I am very confused because I never dealt with these problems when I was a child and it normally occurs early in childhood and later in life to the elderly. I guess my question is if there are any other people around my age dealing with the same problems with PA?

[fbirder]

It's a myth that PA only affects the elderly.

In our support group we have two young people, one of whom was definitely diagnosed before the age of 19.

A couple of years back the PAS were looking for people like you for a survey, as evidence to show that it's not unusual. If you're a member then they have a leaflet about juvenile PA. pernicious-anaemia-society....

[Dakota17777 in reply to fbirder]

Is there anything I could have done wrong to cause this? Or is pernicious anemia mainly random?

[fbirder in reply to Dakota17777]

The suspicion is that there is a strong genetic element to it.

[deniseinmilden]

Yes, definitely.

Please try to count yourself lucky that you have been diagnosed early: there are loads of us who have had symptoms in our teens and beyond but it has taken decades of misdiagnosis before we can get the treatment we need, by which time we are crippled up, with some of the damage being permanent.

There are lots of parents struggling to get sufficient jabs for their children and teenagers, knowing they have B12 deficiency and need more than the 12 week treatment regime.

I'm sorry you have it - it's horrible having a medical problem when all your peers are in their prime, isn't it? Unless you have chosen to be vegan or abuse nitrous oxide there isn't anything you could have done to cause it. Smoking and drinking will make the problems worse but won't have caused it. It may well be genetic or it could be other unknown factors that have caused it.

Either way, the best thing for you is diagnosis and treatment - you then have the chance of leading a reasonably normal life. If caught early enough it isn't as difficult to manage as diabetes for example.

There are a couple of Facebook groups which you could join who have other members your age.

I promise you do have a fulfilling future ahead of you!

[Dakota17777 in reply to deniseinmilden]

Thank you a lot, I am very lucky I got a quick diagnosis and I have definitely improved. I also agree that all my friends are in their prime in life and I feel like I am hitting my low in life. I have recently been able to get out and do stuff with my friends, however, I am worried that I will not be able to do the physical work at my job. Sublingual's have helped and the injections are the reason im feeling better but I do not want this to put a cap on how far I can go in life. So I am basically drowning my self in b12 and my body does seem to catch a little bit of it. I would like to start working out but I am afraid I will get sick again. Any advice on how I can stay in shape with this condition and maybe work out a little each week?

[deniseinmilden in reply to Dakota17777]

A few things to consider...

You are low now so the way forward is upward and positive.

Just as you are trying your hardest to outwardly appear "normal", so is just about everyone else... And they too are hiding ongoing mental and physical battles that are with them all the time as well. After a while you learn who is living with a problem and has learned to deal with it as they are often softer, calmer and more understanding... And people who haven't learnt to cope with challenges envy us our serenity! (I'll forgive you if you want to kick the arrogant ones who've had everything easy! 😁).

You will need to manage it by listening to your body - if you are tired then either rest or see if better diet - a good balance of meat, veg, fruits, nuts and seeds and whole grains - and maybe additional supplements might help.

If you are tired don't push yourself beyond what is really essential - if you do you will only pay for it later.

If you have overdone it, accept that you will have to give up and only sleep and eat well for a day or two.

You will probably benefit from a broad spectrum vitamin and mineral supplement plus extra folate, potassium, magnesium, and maybe vitamin D and iron, ideally from your diet.

Once you feel good again, try a bit more exercise but remember small steps are best and always stop before you get worn out.

Change your thinking on your challenges: your challenge is to build up slowly, very slowly, so you get the gain without the pain. This is harder but you sound up for the challenge and gives the best results long term.

The Wham Bam people will admire your self control and tenacity: their instant gratification methods will look silly by comparison.

Remember "The Hare and The Tortoise" and don't do anything extreme but keep going and you'll get to your goals in the end.

Go for it!

[Sleepybunny]

Hi,

In some countries the term PA (Pernicious Anaemia) is used as a general term for B12 deficiency. In UK it applies to a specific auto immune condition.

If you're in a country where PA is used as a general term for B12 deficiency, did they look into the possibilities I've listed below?

Some of the links/books I've referred to may have some information thatcould be upsetting so might be a good idea to have a supportive family member read through these with you.

Did you have tests for PA?

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.

Coeliac disease ( Celiac in US)?

Coeliac UK website has lots of info about Coeliac disease.

coeliac.org.uk/home/

If B12 deficiency is due to Coeliac disease then a strict gluten free diet may allow gut to heal enough for B12 absorption in gut to improve.

H pylori infection?

patient.info/digestive-heal...

Treatment of H Pylori infection will hopefully allow B12 absorption in gut to improve.

Any exposure to nitrous oxide?

Nitrous oxide inactivates B12 in the body.

Any chance of internal parasites eg fish tapeworm infection? Do you ever eat raw or uncooked fish eg sushi/smoked salmon etc? There are other parasites associated with B12 deficiency in humans eg other tapeworms, Giardia Lamblia etc.

Treatment to get rid of parasite will hopefully allow B12 absorption in gut to improve.

Diet

Do you eat plenty of B12 rich food eg meat, fish, dairy, eggs, shellfish, foods fortified with B12?

A vegan or vegetarian diet can be a risk factor associated with B12 deficiency.

Other possibilities

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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).

"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.

PAS (Pernicious Anaemia Society)

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

They have some members who are parents of young children with PA.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

There is a Facebook support group listed in this next link.

b12deficiency.info/very-use...

I am not medically trained.

[SAM2608]

Hi there

My daughter is 17 and has just recently been diagnosed with PA following a blood test, thinking she was anemic.

She was due to go to university in September, but is going to take a year out and try to manage her symptoms and I think to get her head around it. I’m assuming she hasn’t had PA for that long as she was seemingly very fit and well until 6 months ago. It’s been quite a shock and like you, she is fairly determined she doesn’t want it to limit what she does, but will need to be mindful of the condition I guess. Really feel for you both at such a young age, but the positives are that you have early diagnosis and can hopefully manage your symptoms and take good care of yourselves.

We still don’t have a ‘definite’ diagnosis and I think once her symptoms are stabilised the GP will start to explore that - after a slightly rocky start they are now very supportive and she has been having every other day injections until her dizziness and tinnitus stopped improving, which they have started to do. Her energy and tiredness aren’t too bad. Have yojj in managed to find a good GP?

Good luck

[Dakota17777 in reply to SAM2608]

This makes feel a lot better knowing that there are other people my age that have this diagnosis. I have found a great GP but I am still going to try and get shots more regularly.

[Coxeymcqueen]

I was diagnosed at a relatively young age of about 32 (I’m now 39). My initial symptoms were pins and needles in my hands and feed. I later developed brain fog, forgetfulness, headaches and tiredness which would all start to manifest when my jab was due.

Eventually I got my GP to agree to 8 weekly injections rather than 12 which was a big help and my symptoms were pretty well controlled at that point.

2 years ago I started running and my symptoms started to return much more quickly. I’d got two choices, get more injections or do less exercise. So, I now self inject every week.

Over the last two years I’ve run 3x a week and have got in good shape - despite my deficiency I am able to achieve all my goals in terms of pace etc - I just need to be careful not to over train.

I work as a senior manager in a demanding and technical role, but I’m able to do my job well despite my illness. I know I might be lucky, but a lot of posts on health forums can be quite negative as people are often more likely to share the difficulties they are experience rather than the positives. I too have been through hell and high water to get the right treatment and have been constantly frustrated by dismissive health professionals.

However, I just wanted you to know that if you get the right support and treatment you can still be successful and achieve the things you want in life - don’t let your diagnosis change your outlook. It might be difficult at times but hopefully you can learn to live with your condition and still accomplish all of the things you want to.

[Dakota17777 in reply to Coxeymcqueen]

Wow that is very encouraging. How long after your diagnosis were you able to start working out again?

[Coxeymcqueen in reply to Dakota17777]

Once I was diagnosed I had 12 weekly injections - when I got to week 8 my symptoms returned and I badgered my GP to give me 8 weekly injections instead.

I’ve largely been able to do what I like in terms of exercise and in the main this been hiking and playing cricket; with some occasional 5 a side football and swimming.

2 years ago I got in to running and 6 months later ran my first half marathon. I’m signed up for a full marathon this April. I train 2/3 times a week up to about 30 miles a week. I also bought a road bike and have done rides up to 50 miles.

As soon as I started running I felt my symptoms returning after a few weeks so I started to self inject monthly, but now I do every weekend. A few weeks ago I gave myself a set of loading injections.

My advice is to get started on your treatment and then start to up your exercise and see how you go.

My attitude is that being as healthy as I can be will help to offset some of the effects of being B12 deficient, but I think it’s also true that increased exercise depletes your B12 stores more quickly (my GP thinks this is nonsense ) and so you have to find a balance.

Having a generally healthy lifestyle will help. I find hangovers are much harder to get over than they used to be (but that might be my age) and so I’ve cut drinking right down. My diet could probably be a bit better but I eat pretty well I think.

Anyway, I’m sorry that you have this condition, but I hope that you can get it under control. This forum is a great place to come for advice and support so you’re off to a good start. Good luck

[Michaelaemily_]

Hi there, I was diagnosed with PA at the age of 13, currently am 19 you're not alone!

[PaintLadie]

Yes, I started getting sick when I was about 17 and was diagnosed in my early 20s. I can't remember. I was already sure I was near death when I was diagnosed. Piece of advice hold on tight to all the documentation proving your diagnoses. I did not know any better and had no one to guide me. I lost access to all my medical records and am struggling to continue my treatment as my doctors retire or move on with life. They all need the proof on paper and I am know 37 and once again having to prove my original diagnoses after this long of treatment just to see a new doctor. I can't even get an appointment until I prove it. Please eat healthy, don't drink, take care of your body, take your b12. It stinks but the better you are to your body know the better your physical outcome will be when your my age or older.