Is PA reversible?

[Pigivi]

I've been diagnosed with PA around 4 years ago. I've had aninjection every three months until January 2018 - since then my B12 levels have been good - although in the lower range of normal - and the GP doesn't think it is necessary to have more injections. I'm taking an oral B complex supplement, but I wonder, does that mean that PA is curable?

[fbirder]

Your GP is wrong. If you have PA then you need treatment for life.

[wedgewood]

P. A. is incurable .You need injections for life . That’s incredible that your doctor says that you don’t need injections anymore . Shocking actually.You must get your injections re-instated .

[clivealive Forum Support]

Oh my goodness Pigivi wherever did your doctor get his training?

Pernicious means fatal - deadly - without your B12 injections you will die.

When I was diagnosed with P.A. in 1972 I was told that without the B12 injections I would be dead within two years. That was 47 years ago and I'm still "clivealive" aged 78 so the injections must be working.

I am not medically trained

[joseph01 in reply to clivealive]

Neither are the majority of us clivealive - that's why are specialists and GPs are 'general' practitioners. I was diagnosed with B12D, peripheral neurology and PA a few years ago. The prescribed medication (after much controversy and argument with various 'professionals' including consultants) was B12 injections every two months, vitamin D3, folate and ferritin - all fought for over months / years. Two months ago my GP changed the frequency of the B12 injections from 2mthly to 3mthly - more arguments over a 4 week period but to no avail - he was worried about the colossal reading !, and about the danger of overdosing ! ! It took another doctor, and another 3 weeks, and another argument which was only resolved when I took in the new NICE guidelines. Over the last 2 weeks I have had to fight for the ferritin to be reinstated - it was discontinued last October 2018 as the reading was 'too high'. I am now in the process of fighting for the reinstatement of D3 - which is essential (for survival) to those with autoimmune diseases. I have

Diabetes - Autoimmune disorder

RA - Autoimmune disorder

B12D - Autoimmune disorder

Thyroid disease - Autoimmune disorder (Dr Margeurie-06/03/14)

Chronic Kidney Disease

Iron deficiency anaemia

So YES ... we are, and have to be, experts or else many of us would be DEAD!

[Gambit62 Administrator]

PA is an auto-immune order that affects the gut - specifically attacking the mechanism that allows B12 to be absorbed in the ileum.

PA results in B12 deficiency.

B12 deficiency caused by an absorption problem is treated with B12 injections.

PA - as with many other auto-immune conditions - is treatable but it isn't curable.

Unfortunately using serum B12 to manage a B12 absorption problem after someone has had B12 injections doesn't work because the results are impossible to interpret unless they come back low.

[pvanderaa]

PA is specifically considered to be the hereditary cause of a B12 deficiency. The deficiency can be rectified with injections but the underlying genetic cause cannot yet be treated.

Unfortunately, many people lump all B12 deficiencies under the PA moniker. Were you diagnosed with PA by one of the genetic markers or are you like me and acquired your B12D some other way, like stomach surgery in my case?

For me it is not “curable” as there has been permanent damage to my B12 recycling mechanism.

For vegan or vegetarian diets, where the person hasn’t properly supplemented with B12, they may get better with supplements unless they have also suffered nerve damage.

It’s the nerve damage that gave the name “pernicious”, meaning deadly, to this anaemia to distinguish it from iron or other anaemias. In the 1800s, a diagnosis of PA was a death sentence.

I’m not medically trained but over the 10 years since I was diagnosed and started on injections, this is what I’ve gleaned from the PAS and this site.

[deniseinmilden]

Normally once you get injections any blood tests come back as ">2000" which is off the scale. If you are still getting low readings then it means that you definitely have an ongoing problem where your levels are falling quickly before the next injection and so you definitely need regular injections - if anything, more injections than you are currently getting!

If you have any symptoms, you should be getting more injections too because symptoms are your body's way of telling you that you have a problem - in this case a shortage of B12.

In case you hadn't noticed, lots of us despair at the ignorance of the "health" service with regard to B12 treatment!

[Ritchie1268]

I'm sorry about this but reading your reply I'm even more confused now 😁

I thought what you have explained about PA was Megaloblastic or Macrocytic Anemia? And not everyone with PA has MA, so are they both very similar in terms of what they actually are? Does one cause the other?

I was told when diagnosed with both PA & MA that the MA is where i have fewer red enlarged blood cells & those I do have are squashed, hence not carrying enough oxygen around my body?

[fbirder in reply to Ritchie1268]

I'm not surprised you are confused.

PA is one possible cause of megaloblastic anaemia (folate deficiency being the other). Most (but by no means all) people with PA will also have megaloblastic anaemia as well. PA causes megaloblastic anaemia. Megaloblastic anaemia does no cause PA. PA does seem to have some hereditary element, but it is by no means certain that it is only hereditary.

Normal production of red blood cells involves several steps of cell reproduction, growth, reproduction, growth; rinse and repeat. But a shortage of B12 and/or folate makes it difficult for the cells to make DNA. And DNA is needed for the cells to reproduce. The result is that the progenitor cells grow without reproducing and they end up making red cells that are larger than normal that often still have nuclei (which normal red cells lack).

These large cells aren't much larger than normal cells, so they can easily pass through the small blood vessels. And they aren't any stickier than ordinary cells, so they do not clot more. But their extra size means that the surface area compared to volume is reduced. And it's that which determines how easily oxygen can pass in and out of the red blood cell.

[Ritchie1268 in reply to fbirder]

Great explantation fbirder thank you!

Am I right to assume then that Injecting every other day therefore will cure the Macrocytic Anemia? Obviously I know it won't cure the Pernicious Anemia.

[fbirder in reply to Ritchie1268]

Yes. Once your bone marrow gets enough B12 it will start a burst of rapid cell formation to make lots of working red cells. It should only take a month or so until things are almost back to normal and three months before there is no sign of macrocytosis.

[Ritchie1268 in reply to fbirder]

Thank you. That's what I thought.

The interesting thing is, I was diagnosed back in 2016 with severe 'Central' sleep apnoea, this is the type where you stop breathing & your brain doesn't tell you to wake up.

As you've probably seen where I ramble on about the massive amount of Opiates I took for years, as Opiates supress breathing, I blame that for my now PA etc, but the thing that really interests me, is that since regular Injections, my sleep apnoea has literally disappeared, so the Macrocytic Anemia would have added to the sleep apnoea having been free of the Opiates for a long time now.

[joseph01 in reply to fbirder]

That's an interesting snippet of information I'd not come to in my 'extensive and extended' researches, but it obviously makes total sense. Thank you so much ....

[FlipperTD]

If you were diagnosed correctly with 'Pernicious Anaemia' then it requires life-long treatment. PA isn't curable, but it's manageable with B12 therapy. PA is caused due to changes in the stomach, and the inability to produce 'Intrinsic Factor' (IF). IF is needed to facilitate the absorption of the tiny amounts of B12 in your diet.

If however it was Macrocytic Anaemia due to a lack of Vitamin B12 in your diet, and that's been treated, then that's not the same thing at all. I hope this helps.

[Ritchie1268]

It does thank you 👍

That explains why my Dr said you have MA, PA, B12D & Folate deficiency

Forever learning

[joseph01 in reply to Ritchie1268]

And then, you have to make voluminous and detailed notes about every little thing that is diagnosed and said - and when ... etc .. because if your luck is anything like mine, a few years down the line your GP will take it into his head to change the frequency of your meds (B12 the most likely), the meds you have been prescribed (look out for the deletion of essentials such as folate, ferritin, D3 from your repeat prescription). He won't tell you either - it's up to you to be vigilant - and then fight the battle(s) all over again. Despite the recent changes to who is eligible to prescribed D3 - YOU ARE. You have an autoimmune disorder which makes you vulnerable to DEATH! Here are some more:

Diabetes - Autoimmune disorder

RA - Autoimmune disorder

B12D - Autoimmune disorder

Thyroid disease - Autoimmune disorder (Dr Margeurie-06/03/14)

Chronic Kidney Disease

Iron deficiency anaemia

[Gambit62 Administrator]

Essence49, as per my response above PA, strictly speaking, is an auto-immune disorder which leads to B12 deficiency. PA also causes a lack of intrinsic factor because it attacks and destroys the cells that produce intrinsic factor.

B12 is used for a number of processes that go on in your cells - one is the process that forms healthy new red blood cells - which is why one result of B12 deficiency is a type of anaemia in which red blood cells are large and rounder than normal.

B12 is also used in the process that resets neurotransmitters, the processes that retain the protective lining around nerve cells, the processes used to release energy in the cell ... and others. Some of these processes also use folate - but others don't.

B12 and/or folate deficiency can cause macrocytic/megaloblastic anaemia.

[Pigivi]

Thank you for all your replies - I will have to find a new GP.

When I was diagnosed they told me that I could not produce the Intrinsic Factor - but over the past year my blood results give 'enough' B12 - as I said in the normal range (on the lower side but 'normal')

Symptoms have disappeared too - so it may have been a wrong diagnose? since I have changed my diet -( doing a Low Carb / Autoimmune protocol ) I have reversed a T2 diabetes diagnosis and improved my thyroid function (have Hashimoto's hypothyroidism)

[Foggyme Administrator]

All. Please note - some replies in this thread are inaccurate, inappropriate, and confusing. Those replies have been deleted and therefore some appropriate replies in the thread may now seem out of context.

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