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Pernicious anemia - anyone know anything about this?

(24 Posts)
gibberish Sat 18-Aug-07 10:45:07

My mum has recently been diagnosed as having pernicious anemia and has been having injections of B12 as a result.

Her doctor has told her it is hereditary and if she has daughters they will have it too, so I apparently will develop it. (The doctor didn't seem to think it was a case of 'if', rather I 'will' develop it.)

Anyway, I have googled and found that pernicious anemia is an absence of the protein that helps the body absorb vit B12, or something like that. It can't be cured and if untreated can cause death.

What I was wondering was, should I be taking supplements of B12 now? Will it help? And should I see my doctor for a blood test? Or am I just being a hypochondriac because it doesn't seem to cause trouble until later life anyway...

Sidge Sat 18-Aug-07 12:43:07

I wasn't aware that it is always hereditary. I know it can run in families.

Taking a supplement of B12 now won't make any difference to you, especially if you are not deficient. Even if you are deficient then taking it orally won't help as it can't be absorbed orally in people that have pernicious anaemia.

I wouldn't worry too much, but you can always ask your GP for the blood test to put your mind at risk.

Bubbaloo Sat 18-Aug-07 13:06:20

I've had pernicious anemia for about 8 years now(that I've known about!),although starngely enough,I don't know much about it.
I have vit b12 jabs every 12 weeks,as like Sidge said,it can't be absorbed orally.
No one else in my family has it(that they are aware of),although my FIL does and also has the jabs,quarterly.
I only found out I had it by chance as I was having lots of tests done for IBS and it was picked up,and when I'm due my jab I'm usually really tired for a few weeks beforehand.I thik also that f you have it,you are meant to get your levels tested once a year too,but no-one has every mentioned anything like that to me)at my surgery).I'm due a shot in a fortnight,so think I'll ask a few questions[smiel].

Sidge Sat 18-Aug-07 13:44:33

Bubbaloo - yes you should be having yearly bloods, so make sure you ask the practice nurse for a blood form next time you go!!

And gibberish - I think death with untreated PA is very rare, but it can make you feel pretty grotty. Tiredness, tingly fingers, confusion - your mum should feel better after her first few injections

preggersagain Sat 18-Aug-07 13:47:39

my sil was told to drink as little alcohol as possible, but predumably once it is under control you can have a wild night every now and again!

Desiderata Sat 18-Aug-07 13:53:18

A friend of mine had PA. Her mother didn't, but that's not to say that an aunt or other relative may have had it.

There is some suggestion that the vampire myth (specifically Bram Stoker's Dracula) is based on PA. Before this was diagnosed and treated, women would literally 'fade away,' as if all their blood had left their body.

Any how, I know it isn't nice for your poor mum or anyone else who has it. Fingers crossed that you'll be fine

Bubbaloo Sat 18-Aug-07 13:56:38

at my typo's!

Sidge-Yes,I will ask when I'm there next,especially as someone else recently also said I should be having my levels checked.I had Ds2 not long ago so I suspect if there were any probs they would've shown up on all the bloods I had when pg.

gibberish Sat 18-Aug-07 15:19:42

Aw thanks everyone for putting my mind at rest.

Sidge, it isn't always hereditary - sometimes it can be down to other reasons - diet etc. But whatever type my mother has is hereditary.

I didn't realise that taking B12 orally wouldn't have any effect - that's interesting.

Mum's already starting to feel better - she is much less tired than she was before.

I think I will have a word with my doc next time I need to go. No need to worry about it yet it seems. Mind you, not so sure about the limiting alcohol bit... lol. Thanks again

Desiderata Sat 18-Aug-07 15:21:57

If it helps, my mate drinks like a fish!

Elasticwoman Sat 18-Aug-07 15:31:28

My grandmother had pernicious anaemia for 10 years before she died of a massive stroke at age 85. My mother (her daughter) is now 85 herself and in v g health. I don't have pernicious anaemia either. I don't think it is certain that you will inherit it.

Sidge Sat 18-Aug-07 16:33:45

Ah, got you Gibberish.

I thought your mum's dr meant that PA itself is always hereditary. Ignore me, I got all confuddled!

TheBlonde Sat 18-Aug-07 16:40:49

Info here PA
PA Society

Taking it orally can work but you have to take large doses

gibberish Sat 18-Aug-07 21:41:47

lol Desiterata - yes that certainly helps!

Thanks elasticwoman and TheBlonde. Info very helpful. I should live to be a ripe old age after all lol. Methinks my mum's doctor may be a little over dramatic...

leslielounge Tue 04-Sep-07 18:30:13

I have pernicious anemia and I will have it the rest of my life. I was diagnosed while living in Germany. My feet and hands would burn and tingle constantly for weeks. Which made walking or even lying down uncomfortable. My opinion is I have always had PA, the problem is most doctor’s don’t examine your blood cells during normal medical visits.

After I was given the vitamin supplements-which don't work at all.( waste of time to try any pill form, your body can't digest it)
The doctor gave me injections in the beginning every 3 months - but as things have progressed my injection time has been moved up.

I have tried the sublingual b- 12 which you can find at health food stores( It works pretty good between injections)
I am taking injections every 2 to 3 weeks ( which is the best method for me (don't expect to feel great instantly with injections) I suggest for anyone with pernicious anemia to combine b 12 injections with sublingual b- 12.

If you do have PA or are afraid you may have it. A oncologist ( cancer specialist/ blood specialist) can check your blood. People with PA normally have larger blood cells - hence the name megoblastic anemia.

Taking sub-lingual b-12 will help some. I don’t really think there is any preventable measures against developing this disease. If you have it don’t expect to only suffer from PA, other illnesses come along with this diagnosis. I am currently undergoing testing for MS - Multiple Sclerosis.

TheBlonde Tue 04-Sep-07 18:32:59

Hi leslie - are you in the UK now?

I am breastfeeding and finding I need jabs more frequently but my GP won't oblige

lou33 Tue 04-Sep-07 18:34:11

my mum had it

leslielounge Tue 04-Sep-07 18:55:37

PS. I do feel there is a difference from B-12 deficiency & pernicious anemia. Many older adults develop B-12 anemia with old age. Most people with pernicious anemia develop it at a young age 20's 30's or are born with it.

Most people with PA have folate deficiency
(iron)also. I take 325 mg of iron 2 times a day and 1 mg of B-12 every 2 to 3 weeks.

If you are a female - your monthly menses - is often a killer( I always feel 80 years old during this time/ I can sleep for hours as my energy is always low.)I am in my 30’s and I don’t have the energy to go out with friends anymore..

I am having an hysterectomy operation soon, so I plan to increase my B-12 injections. That is the scary part of such a illness - the thought of losing blood and your body being totally fatigued. I always wanted children, but in my case my body can't take anymore menses cycles, they are slowly killing me- I feel.

Taking the large amounts of iron that I take doesn't help as my flow is soooooo heavy.
After my 7-10 days of bleeding my energy is gone totally.

I often lose weight during the cycle as my appetite subsides, walking to the kitchen is a chore, even getting out of bed.

My hopes are after the hysterectomy my body and soul will feel much better.

I can understand how this disease killed people in earlier years, the symptoms are so horrible.

Most people think if you have a problem absorbing B- 12 it isn't a big deal. Which is wrong. It is a illness which most people under-rate overall.

TheDuchess Tue 04-Sep-07 18:56:18

I had vitamin B12 jabs during my pregnancy. I take metformin for PCOS and vitamin B12 deficiency is a known side effect. Now I'm 10 months post-natal by blood is normal again and I no longer need the jabs.

At the time my endocrinologist was pretty clear that my B12 levels would return to normal after pregnancy. My GP however diagnosed PA and told me I'd have jabs forever. He was wrong.

Any chance of a 2nd opinion from a consultant?

TheBlonde Tue 04-Sep-07 19:03:15

leslie - have you had your thyroid function checked recently?

leslielounge Tue 04-Sep-07 19:05:05

Hi the blonde,

I am sorry to hear of your problems with your GP.

I am in the states currently, but I love to talk with others with my condition.

My doctor who is a cancer specialist in the US, prescribes me B-12 tinctures.( I pick up from my local pharmacy 3 or 4 bottles at one time) I am giving myself injections in the upper thigh each month. Which is better than going to the medical office every month for a injection.

If you can get over the shock of sticking a reasonably long needle in your thigh muscle, you should be ok.

Plus, I got a deal on syringes from the local store. I have 200

Can't you give yourself these injections???

Why is your doctor denying you injections??

leslielounge Tue 04-Sep-07 19:19:32

My thyroid has been a problem with me in the past. I am currently euthyroid or suffering from sick thyroid syndrome. I have been seeing my Endocrinologist and he is keeping a eye on it. He isn't able to treat it as I am in a " GRAY" area he says.

I have seen a Neurologist as well. I may have MS as well. But, I will have to wait another year for them to see any brain changes.

I have issues with IBS as well like many other people with PA.

My hopes are that someone will do more research on this illness.

leslielounge Tue 04-Sep-07 19:35:58

No one else in my modern day family has this illness. My mother doesn't have it.
Maybe it skipped a generation in my case. I know whatever strange illness exist in the world - my luck is sooo bad, I would have it.

But, if you have this illness my doctor told me- it is a good idea to keep your physician informed of any changing symptoms. People with PA have two times to the risk of developing stomach cancer.

Megoblastic blood disease is rare. Not common at all. Whenever, I see a new doctor they are amazed to meet someone with such a rare disease. They often seem to smile as if I won a prize. lol

I keep informed of this disease and any rare disease at this website
They have cataloged information on over 6000 rare diseases.
If someone needs more info on this or anything rare.

TheBlonde Tue 04-Sep-07 20:06:13

leslie - healthcare in the UK is tricky, they are not obliged to do anything for you!

I will see my doctor later this month then the haematologist next month and see what they say.
I already got a sneaky injection from my MIL

Do you have to have a hysterectomy? I thought they could do laser stuff to reduce the womb lining and reduce bleeding instead

leslielounge Tue 04-Sep-07 21:50:43

Yes, they gave me the depo provera shot and I bled for 5 months straight--- that is a nightmare for anyone with anemia. It was so heavy, I needed a diaper and bed pad at nighttime during my sleep. I didn't know a person could bleed that much..OMG

At this point, I want it to be over.
The PA will be easier to deal with as well after the OP.

I have no interest in trying anything else.. the doctor told me It would be better for my health to have hysterectomy.

I wish you the best of luck with your GP exam and crossing my fingers you get your dosage increased.

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