PA and the Anaemia bit...

[scorpiojo]

Can someone please tell me how to explain to a US friend that I don't have to see Anaemia in the blood to have PA.... I know that it's down to the name of the health issue, as I recall someone saying how misleading the Anaemia bit is... Any links would help... Thanks Jo x😊

[pvanderaa]

Usually it is the "pernicious" part that I need to explain. The nerve damage occurs before the anaemia shows up and the patient never recovers once the anaemia is treated. Hence the nickname the "deadly" anaemia.

It is the concept of anaemia that it treatable that fools people and GPs into thinking that they can faf about trying different medications when getting B12 and folic acid along with a multivitamin is what is needed. The longer they wait, the more damage occurs.

[scorpiojo in reply to pvanderaa]

So irritating I have to explain to this person, but my US friend is fixated on my report that doesn't show the anaemia... In my new blood test for thyroid and lots of other stuff my B12 was 730 from 93!! I was waiting for the "Jo you don't need B12 jabs" email... So thanks for sharing... Nice to know I'm not alone or mad, or worse wrong... I'm happy I don't have anaemia showing but I did'nt name the silly illness!

[Foggyme Administrator]

Hi Scorpiojo.

Here's what Martyn Hooper writes about pernicious anaemia:

Anaemia (in American English, Anemia).

Anaemia is derived from two Greek words “an”, meaning lack of, and “haema” – blood. So anaemia literally means lack of blood. There are over 90 different types of anaemia including blood loss through trauma. But we are interested in one cause of low haemoglobin, lack of B12. As we have seen, if a person has low or very low levels of B12 then he or she won’t be able to make the healthy red blood cells. And because the red blood cells are a strange shape they won’t be able to carry haemoglobin. He or she will be lacking oxygen in their body and consequently will feel continually tired and exhausted, won’t be able to think clearly and will suffer from many other symptoms. If the B12 Deficiency is not addressed, then he or she will die. And that’s where the ‘pernicious’ part of Pernicious Anaemia comes from. Before it was able to be treated, people who became anaemic due to lack of B12 died.

[Extreacted from the PAS Website]

So...since synthetic B12 was developed in the mid-late 50's, PA is no longer deadly (pernicious) - since a form of treatment now exists - B12.

About 30% of people who have PA present with the signs and symptoms of B12 deficency (including neurological symptoms) without anaemia being present. Anaemia tends to come about later in the disease process (as the red blood cells become more damaged and therefore less able to carry heamaglobin (and hence oxygen), and anaemia eventually occurs.

So...you can have pernicious anaemia without having anaemia 😀

When PA suffers who present with macrocytic anaemia (where the red blood cells are enlarged, inefficient, and less able to carry oxygen) are treated with B12 therapy, the red blood cells slowly recover, regain the ability to oxygenate the blood properly, and the anaemia resolves.

They no longer have macrocytic anaemia (that can - but not always - be caused by PA) but they still have the medical condition pernicious anaemia (because PA can be treated, but not cured).

So the name pernicious anaemia no longer fits the medical condition - 'cause it's no longer pernicious, and you can have it without having anaemia.

There are those who suggest that the name of the condition ought to be changed - and are campaigning for this - but my brain currently has no idea what the new suggested name is 😖😀

👍

P.s see Deuto's reply below - medical term (and suggested as a better name for PA): Autoimmune Metaplastic Atrophic Gastritis. Thanks for the brain help Deuto .

[scorpiojo in reply to Foggyme]

Thanks Foggy.... I appreciate your help and will email this over and hope it shuts them up.... Grrrr

[Frodo in reply to Foggyme]

I'm interested in the "90 types of anaemia" Foggyme - I had no idea - but haven't been able to find out anything about them. Everything I've found so far only mentions 2/3 kinds of anaemia. Any other info you know of?

[Foggyme Administrator in reply to Frodo]

Hi Frodo. Hmmm...well...here goes...it all depends on classifications...and who's doing the classification, and for what purpose. And that has a bearing on what is written, where you'll find it (or not)...and the information will be presented and classified in different ways by each researcher or source.

Broadly speaking, anaemia is classified into the three main causes:

1) Anaemia caused by blood loss

2) Anaemia caused by decreased or faulty blood cell production

3) Anaemia caused by the destruction of blood cells

All types of anaemia fall into one of the above classifications.

Anaemia can also be classified into 'types' of anaemia (each of which sits in one of the above classifications). But usually, only the most common types are talked about.

Here's what the Mayo Clinic say's about some of the common types of anaemia:

•Iron deficiency anaemia. This is the most common type of anemia worldwide. Iron deficiency anaemia is caused by a shortage of iron in your body. Your bone marrow needs iron to make haemoglobin. Without adequate iron, your body can't produce enough haemoglobin for red blood cells.

Without iron supplementation, this type of anaemia occurs in many pregnant women. It is also caused by blood loss, such as from heavy menstrual bleeding, an ulcer, cancer and regular use of some over-the-counter pain relievers, especially aspirin.

•Vitamin deficiency anaemia. In addition to iron, your body needs folate and vitamin B-12 to produce enough healthy red blood cells. A diet lacking in these and other key nutrients can cause decreased red blood cell production.

Additionally, some people may consume enough B-12, but their bodies aren't able to process the vitamin. This can lead to vitamin deficiency anaemia, also known as pernicious anaemia.

•Anaemia of chronic disease. Certain diseases — such as cancer, HIV/AIDS, rheumatoid arthritis, kidney disease, Crohn's disease and other chronic inflammatory diseases — can interfere with the production of red blood cells.

•Aplastic anaemia. This rare, life-threatening anaemia occurs when your body doesn't produce enough red blood cells. Causes of aplastic anaemia include infections, certain medicines, autoimmune diseases and exposure to toxic chemicals.

•Anaemias associated with bone marrow disease. A variety of diseases, such as leukaemia and myelofibrosis, can cause anaemia by affecting blood production in your bone marrow. The effects of these types of cancer and cancer-like disorders vary from mild to life-threatening.

•Haemolytic anaemias. This group of anaemias develops when red blood cells are destroyed faster than bone marrow can replace them. Certain blood diseases increase red blood cell destruction. You can inherit a haemolytic anaemia, or you can develop it later in life.

•Sickle cell anaemia. This inherited and sometimes serious condition is an inherited haemolytic anaemia. It's caused by a defective form of haemoglobin that forces red blood cells to assume an abnormal crescent (sickle) shape. These irregular blood cells die prematurely, resulting in a chronic shortage of red blood cells.

•Other anaemias. There are several other forms of anaemia, such as thalassemia and malarial anaemia.

Here's a link to various research papers published on the Mayo clinic website - might find something interesting there:

mayoclinic.org/search/searc...

There are many other types of anaemia that are much less common (and less commonly talked about) and these run into hundreds of 'types' of anaemia (the 90 quoted by Martyn in my original response is a very conservative estimate).

Each 'type' of anaemia has its own specific charecteristics and traits, and to make matters more complicated, types of anaemia are often named after the researcher who first identified it (these are the ones that are often difficult to find information about unless you already know what they are called!).

Here's somewhere you may be able to find some of them mentioned:

search.medscape.com/search/... of anaemia&plr=all&page=1

Information about the classification of anaemia (from one researchers point of view):

i.ytimg.com/vi/z2Wd3pQsnKg/...

And a couple of interesting websites (which I suspect you may have already seen:

irondisorders.org/ nhlbi.nih.gov/health/health...

search.medscape.com/search/...

Sorry if the links don't work - having real IT issues with the site at the moment. If they don't link through properly, just copy and paste them into your web browser and they should pop up.

Not sure if this was what you were looking for...but hope it helps 👍

[scorpiojo in reply to Foggyme]

Interesting FoggyMe thanks 😊

[Foggyme Administrator in reply to scorpiojo]

Apologies for staying from your original question .... but all goes to the whole...hopefully 😄

[scorpiojo in reply to Foggyme]

No, it's completely ok... I appreciate all help and you and FBirder have been great to me along this journey 😊

[Frodo in reply to Foggyme]

Thanks so much Foggyme and yes, sorry if this was an aside from the original question scorpiojo .

Gosh, you went to so much trouble, Foggy - I really appreciate it. In particular some of the 2nd lot of links are very informative. I had no idea anaemia was so complex, I used to think there was only one kind - iron deficiency - then I heard of PA which I thought was extremely rare - and it turns out there are 90+ types. I wonder how this is accounted for in diagnosis at the average medical practice.

[Foggyme Administrator in reply to Frodo]

No problem. Accounted for- don't think it always is.

Ideally, identification of th common anaemias would take place at GP level and more specific and perhaps uncommon causes would be identified at specialist/consultation level.

👍

[Deuto]

To add to the excellent responses by pvanderaa and foggyme, I found the discussion in this thread (link below) really helpful in explaining that PA can exist without anemia; that neurological symptoms usually exist long before anemia appears; and that PA is a bit of a misnomer.

healthunlocked.com/pasoc/po...

In particular these bits from replies in that thread were particularly useful, to me anyway:

Gambit62

- "basically PA is a misnomer - it was originally identified as anaemia that lead to neurological problems and death and it was a couple of centuries before the actual mechanisms involved - and the vitamin B12 were actually identified.

"Something like 30% of people actually develop neurological problems - which can include subacute combined spinal degeneration before anaemia appears.

"

...

"You might be better of explaining to people that you have a problem absorbing and using b12 rather than using the label PA which is an historical inaccuracy - most medics would probably tell you that the inaccuracy is because it is no longer life-threatening ... think a lot of us on here would probably be more inclined to say that it is the anaemia part that is inaccurate as for many the on-going mistreatment can amount to a living death."

Polaris - first comment

"The term 'Pernicious Anaemia' is one of the reasons why many doctors are confused as you do not have to have anaemia to have severe B12 deficiency - many people have enough folic acid, which will mask the extent of a deficiency and is just one of the reasons tests are so unreliable"

...

and stichtingb12tekort.nl/weten...

"Conclusion

Apparently this knowledge (and all the aforementioned) was lost over the years, as these days many physicians are not aware of the fact that neurologic and neuropsychiatric symptoms of a B12 deficiency occur without anemia and/or macrocytosis, and that a deficiency can have serious consequences before anemia ever develops. Unfortunately it is not unusual, like Smith reported back then, to come across cases of this nature.

A vitamin B12 deficiency can lead to serious neurological, cognitive and psychiatric symptoms. Delaying treatment can have devastating effects. Physicians should be aware that neurological damage can occur before anemia develops, and consider a vitamin B12 deficiency when neurological and/or neuropsychiatric symptoms are present, with or without the presence of anemia. The cost of testing for a possible B12 deficiency and treating the deficiency when present, are low. The benefits of an early diagnosis are potentially enormous, and not just financially."

------------

Then these bits from further comments by Polaris further down the thread:

"Just came across this and thought you'd be interested:

mdpi.com/2072-6643/5/12/503...

"Whereas the haematopoietic changes are highly characteristic and are therefore primary indicators in diagnosis of a Vitamin B12 deficiency, the neurological disorders show a much greater range of variation and do not receive due recognition as effects of a B12 deficiency in clinical practice. Neurological disorders, however, are often the earliest and, in some cases, the only clinical symptoms of a functional Vitamin B12 deficiency.

The incidence data vary. According to the IOM (Institute of Medicine, Washington, DC, USA), 75%–90% of persons with a clinically relevant B12 deficiency have neurological disorders, and in about 25% of cases these are the only clinical manifestations of the B12 deficiency [1,3,4]. The neurological disorders may occur together with the haematological changes or independently of them.

On the whole, it can be assumed that about 60% of patients with pernicious anaemia will also manifest symptoms of a funicular myelosis. About one-quarter of the patients with confirmed Vitamin B12 deficiency and neurological disorders showed no haematological changes. Interestingly enough, there is also an inverse correlation between the severity of the haematological and neurological disorders [5]. The more severe the neurological disorders, the less significant the haematological changes, and vice versa. The causes of this are unknown."

------------------

...

"As for people accusing you of exaggerating 😟 it must be so annoying and shows how little is known generally about this disease.

Just had a thought - maybe take a leaf out of Martyn Hoopers book - he wrote that he did not have Pernicious Anaemia any longer but would always have Autoimmune Metaplastic Atrophic Gastritis. "So, if your doctor (or in your case, your friend Addie) tells you that you no longer have Pernicious Anaemia agree with him or her but point out that you still have, and always will have Autoimmune Metaplastic Atrophic Gastritis." 😉

martynhooper.com/2015/09/24...

-----------------

Back to me.

I particularly love the Martyn Hooper quote that " he did not have Pernicious Anaemia any longer but would always have Autoimmune Metaplastic Atrophic Gastritis." I have now started using this in some situations to explain as I found that when you say that you have PA, people assume that if you just take a few tablets (eg iron tablets) you will be OK.

(I am hoping the links will come through OK. If not I will send them separately in an addendum.

[Deuto in reply to Deuto]

Oops, some links did not come through OK.

Correct link for Polaris' first comment quoted above

healthunlocked.com/api/redi...

Correct link for Polaris' 2nd comment quoted

healthunlocked.com/api/redi...

Correct link for Polaris' 3rd comment quoted

healthunlocked.com/api/redi...

Fingers crossed!

[scorpiojo in reply to Deuto]

Thanks this is all very helpful guys.... 😊 hugs to all...