Megalobloblastic Aneamia and PA

[wp69]

What are the symptoms when you reach megaloblastic anaemia with PA , im led to believe this is quite a late stage of the disease .

[topazrat]

When I had it, I honestly thought I was going to die. Just walking upstairs would leave me breathless and dizzy. If I had to get up for the loo in the night, it would take about 10 minutes to get my breath back and my heart would be pounding fit to burst. I was pale, exhausted, thin and obviously ill. When my blood was tested, I was so anaemic that it was a toss up as to whether I needed a transfusion or not. My HB at the time was 7 and it should have been between 12 and 16. Ferritin level was 5! I was told at the time not to do anything strenuous becuase my heart could give up. Scary times.

[wp69 in reply to topazrat]

Sounds just like I was

[Nackapan]

My daughter was bedbound and in hospital when that result came in. Also severely Low in ferritin and folate and b12 . Hb okay .

BP way too low

If she sat up in bed she'd pass out or have a ? seizure .

Was on a cardiac ward .

Others waiting for heart surgery ??

[Technoid]

I have read that somewhere too but in fact it is possible for the most serious neurological progression, sun-acute combined degeneration of the cord (SACD) to present without anemia as shown by this case:

ncbi.nlm.nih.gov/pmc/articl...

My non-professional opinion is that folate levels may have a strong effect on whether B12 deficiency presents with neurological symptoms or anemia. I don't think anemia is the end-stage. If that was the case, we would expect all B12 deficient patients with anemia to already have SACD which is certainly not what is seen, in fact some research papers mention that it seems to be an either/or, with anemic patients often lacking neurological symptoms and vice versa.

It is not known why this happens (presentation with just anemia or just neuro symptoms), I just have a hunch that it is related to folate based on many readings of various papers and anecdotes. I have a very high folate intake and was never anemic yet had significant neurological damage. Likewise in the study above the patient was a strict vegetarian, so likely a high folate intake.

I may be wrong about the effect of folate, it is at the moment only a hypothesis right now and B12 deficiency is very poorly understood in terms of why certain symptoms present with certain individuals and not with others, or temporarily worsen with treatment in a seemingly paradoxical way (nerve recovery explains some of this but I don't think its the whole story)

Good symptoms list here:

b12-institute.nl/en/symptom...

[Gambit62 Administrator]

People vary considerably as to which of the potential symptoms of B12 deficiency manifest in what order. B12 is used by a lot of process that go on in cells. Macrocytosis is caused by effects on the production of red blood cells in bone marrow.

Symptoms of B12 deficiency can often be the result of effects on multiple processes and systems - eg breathlessness could be effects on the autonomic system or it could be due to anaemia - tiredness could be anaemia or the role of B12 in generation of energy at the cell level - neurological symptoms could be deterioration of the protective sheaf around nerve cells or they could be resetting of neurotransmitters.

[Rosydawn]

My PA was discovered and diagnosed after a full blood test showed I had megablastic anaemia. I was constantly breathless, had the sighs, which came with muscle fatigue … too tired to dry after a shower kind of tired For me it was a relief as it triggered the GP to do intrinsic factor tests which confirmed PA. B12 fixed the anaemia pretty quickly but still figuring out the rest of the PA symptoms.

[wp69 in reply to Rosydawn]

its a struggle isn't it

[PaintLadie]

I had it and I was so tired. I slept a lot. My breathing was shallow. I would go to bed not expecting to wake up, literally. I was a teen. I was very easily stressed. I would just break down at any stressful situation even those that would not seem so stressful to a normal person. I didn't realize how pale I was until looking at old photos. I ate only once a day. I craved meat and sugar. I fell asleep in classes and was always finding some where to sleep. I don't remember other symptoms because I was always sickly. Mostly it was feeling so weak that I knew I was just not going to wake up one day and expecting to die in my sleep. I don't think being so young I really understood death but I knew I was knocking on deaths door. I also had muscle spasms in my back that were pretty severe and I had been on narcotic pain killers for a while and was constantly using those stick on pain killer pads for muscle aches. When diagnosed I was told I had megaloblastic anemia and pernicious anemia because I had no intrinsic factor. I did not ask to see test results. I was really young and very sick. It is not something I was thinking about. I was surviving. I did not have a supportive family life or someone trusted to go to the doctor with. I will say although I did have muscle spams and pain in my back. I was very much numb and would actually do things like run and such just so I could feel a good sort of pain rather than the pain I was constantly feeling.

[jimmel196]

When I was diagnosed at 57 years old my symptoms were some fatigue, brief episodes of double vision, peripheral neuropathy (hands and arms and feet and legs up to my waist). I had macrocytic anemia, low vitamin b12, low iron, low vitamin d, subacute combined degeneration of the spine. I continue to work even though I have some permant neurological symptoms.

[WiscGuy]

The following is the introduction to the medical-journal article, "The Many Faces of Cobalamin (Vitamin B12) Deficiency".

[Start quote]

Several scientific articles and textbooks have described the clinical presentation of patients with cobalamin (vitamin B12) deficiency. After the classic presentation of Addison-Biermer disease with megaloblastic anemia, many generations of doctors have been educated with the view that vitamin B12 deficiency exclusively presents itself with this type of anemia. Additional cases have been reported in which neurologic abnormalities were the main presenting symptom, with subacute combined degeneration of the spinal cord as one of the most feared manifestations, often leading to permanent disability. Lindenbaum et al reported a large series of 40 patients who had neurologic symptoms or psychiatric disorders caused by vitamin B12 deficiency but who had no anemia or macrocytosis. Psychiatric symptoms may vary from depression to mania, psychosis, and occasionally suicidal thoughts (Supplemental Table 1, available online at mcpiqojournal.org). The reason why some patients mainly present with megaloblastic

anemia and others with neurologic symptoms remains unknown.

[Stop quote]

The article also includes the following mistaken views often held by doctors.

[Start quote]

TABLE 1. Frequently Reported MISCONCEPTIONS and

MISBELIEFS Regarding Vitamin B12 Deficiency

DIAGNOSIS: You do Not have vitamin B12 deficiency

because

(the following are MISTAKEN beliefs)

* You have no anemia

* You have no macrocytic anemia

* Your serum vitamin B12 level is within the reference

range of 140 to 450 pmol/L

* Your serum vitamin B12 level is only moderately

low

* Your serum vitamin B12 level may be low, but your

plasma level of methylmalonic acid is completely

normal

* Vitamin B12 deficiency only occurs in elderly people

* Vitamin B12 deficiency never occurs in children

TREATMENT

(the following are MISTAKEN beliefs)

* Oral therapy is as good as or even better than painful injections to alleviate neurologic symptoms

* You may stop treatment because your serum

vitamin B12 level has normalized

* You must stop treatment because your serum

vitamin B12 level is elevated

* You must stop after 5 injections because vitamin B12 can have serious adverse effects

* You must stop the injections because your symptoms have worsened

* We must measure your serum vitamin B12 level after 3 injections to see whether the treatment is

successful

* We must stop vitamin B12 injections now that you

are pregnant

[LadyBothwell]

I got to the megaloblastic anaemia stage. All I remember was i thought I was going to die and honestly some days I wanted to. It took a while to diagnose because something to do with it being masked in the blood tests because my iron was very low and folate too.On the funny side I remember once getting up and having a shower and getting back into bed because i was so tired. My husband went to work thinking I had already gone and when he came back, he realised I had slept and not moved the whole day, not rung in sick or anything!