Pa

[Mono21]

Hi. I haven’t been on lately but I have a few questions. I’ve was diagnosed with Pernicious Anemia in 2012. I’ve had vitamin B-12 injections and my b-12 is still low. What else can I do? I go to Mayo Clinic in Rochester . Dr says PA isn’t cureable anymore. I will be going back now in December.

[clivealive Forum Support]

Hi Mono21

How often are you having the B12 Injections?

Are they given to you by your local doctor/surgery?

Do you have a return of neurological symptoms in the run up to your next injection?

It is true that P.A. is not "curable" but it is treatable hence the B12 injections for life.

Was you Folate level tested?

I am not a medically trained person.

[Gambit62 Administrator]

Just after an injection your B12 levels will be off the scale and then they will fall over time.

How quickly this happens varies a lot and whether you feel well in the normal range also changes.

To be honest serum B12 isn't a useful test after you have had loading shots and are on maintenance doses - it tells you what is happening in your blood, not what is happening in your cells. This means it can be a good test for diagnosing an absorption problem but isn't a good test for managing one because the relationship between what is happening in your cells and in your blood can be fundamentally changed by injections - and some people need to keep their levels very very high after injections.

You need to go by your symptoms and when they start to return to determine the frequency of injections, not by blood tests.

If you need higher levels of B12 then you will need more frequent B12 shots.

[Mono21]

Hi. Well the B-12 injections started daily then it went to weekly and monthly. I’ve been back and forth since September of 2012. I give myself the injections plus my oncology/ hematologists gives them to me also monthly. 2,000 milligrams of vitamin B-12.

Dr at Mayo says that’s it’s been so long so it’s not cureable anymore but I still need to have the B-12 injections. PA is curable if caught on time. When I go back to Mayo I see a number of doctors. Neurologist is one that I see. My symptoms are nuts. Migraines, naseua vomiting, migraines, loss of balance, vision and a lot more.

It’s frustrating.

[Mono21 in reply to Mono21]

Oh and yes I also have plenty of blood work done every 3 months. They check everything

[Gambit62 Administrator in reply to Mono21]

PA isn't curable full stop - no possibility of curing it if it is caught early enough. It is an auto-immune disorder in which the body attacks the mechanism in the gut that allow most of your B12 to be absorbed. It takes a long time for this to actually end up in a B12 deficiency but if you have PA you basically need to have injections for life but the frequency varies a lot from one individual to another.

If the bloods are being checked before an injection then they are just measuring the rate at which your kidneys are removing B12 from your blood.

In the UK monitoring of B12 after loading shots is not deemed to be useful and is actually a waste of money.

Keep a diary of your symptoms and how they change in relation to your B12 shots. If they don't change at all with the shots then that implies that B12 isn't part of what is going on for you at the moment. If they improve immediately after a shot and then tail off as you head towards the next one then that implies that you need the shots more frequently.

[Mono21 in reply to Gambit62]

First of all, I have been told that vitamin B-12 injections are for life. But, I also have GI issues autoimmune deficiency and a lot of other things. My B-12 is very low and I do keep a diary for everything.

[Gambit62 Administrator in reply to Mono21]

Does your diary show any variation in your symptoms between injections.

If your levels aren't off the scale after B12 injections then the injections are not being done properly. The B12 from an injection gets into your blood very quickly and the amount administered in a 1000mcg shot is 3 years worth of B12.

It sounds as if your tests are being done before a B12 shot and if that is low it implies you need shots more frequently.

[Mono21 in reply to Gambit62]

I’m pretty sure my doctors know how to administer the injections.

[Foggyme Administrator in reply to Mono21]

Momo21. Your GP may well know the technique required to administer an injection but if you read the posts in this forum, it will become clear that the majority of doctors and consultants know precious little about B12 deficiency or PA, much less how to treat it appropriately.

Many here struggle to get diagnosed and treated, most GPs do not prescribe injections at the required frequency and many withhold treatment from those who need it, thus causing irreversible neurolgical damage to those impacted.

If your B12 is still low despite having B12 injections, then your doctor(s) are under-treating your B12 deficiency and presumably hence your post here asking for help.

Can I join with Gambit62 and reiterate...if you are still having the symptoms of B12 deficiency (or your symptoms return before your next injections is due) then please do not make the mistake of thinking your current doctors are treating you appropriately or are aware of the correct treatment regime for those with B12 deficiency (from whatever cause, including PA).

Of course the could well be other reasons for your continued symptoms (likely if your injections do not bring improvement)...and if that's the case, then sorry but this forum cannot assist with that.

[Mono21 in reply to Foggyme]

Yup

[Pood in reply to Mono21]

That is a USA definition of PA. Both PA and being very B12 vitamin deficient in America are called the exact same thing. The only difference is 'Intrinsic Factor'. Lack of Intrinsic Factor is incurable, thus continuing injections in all countries for life....America 1 monthly, UK 1 every 2 months with lack of 'intrinsic factor'. Mine happened to be caused by Celiac Disease...unable to absorb B12.

[Mono21 in reply to Pood]

Thank you Pood

[Mono21]

Have you read more on PA

[Foggyme Administrator in reply to Mono21]

Mono21. Not sure what you mean here or who this question is directed to? Please can you clarify.

[Mono21 in reply to Foggyme]

Gambit62

[Foggyme Administrator in reply to Mono21]

Sorry Mono22...reply may be to Gambit, but still not clear what your question is? Is there something in particular that you want clarifying? Something you’re not clear about? Another question?

'Have you read more on PA' a rather broad question...