How long does it take to correct macrocytosis?

[siamesefrmsiam]

I was first presumed to have PA in February 2020. I say presumed, as I have had very fractured testing and follow-ups due to the pandemic (I am in the USA). For example, I never had my loading doses, but I am prescribed to self-inject 3x per month since July. Comparing my blood tests from August with the earliest I can find from 2018, my comprehensive blood count has hardly changed. WBC and MCHC are just below range, and MCV, MCH, and RDW are just above range. While my neuropathy and vertigo have gotten much better since July, I am still often breathless and have heart palpitations with gasping. I take a daily multivitamin that contains 400mcg folate. Is there anything else I should be doing? I will probably not be able to see my doctor for more testing until February.

[Sleepybunny]

Hi,

I hope you find the answers you need.

Have your iron and folate levels have been checked?

What was your B12 level before treatment started?

Link about Complete Blood Count (CBC)

labtestsonline.org/tests/co...

Link about Iron Tests

labtestsonline.org/tests/ir...

Link about B12 and Folate deficiencies

labtestsonline.org/conditio...

There are other conditions besides PA that can lead to B12 deficiency.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Overseas members can use online contact form.

B12 Deficiency Info website

b12deficiency.info/

Some info on this site may be UK specific.

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

B12 article from Mayo Clinic

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

Table 1 in above article is about frequent misconceptions about B12 deficiency.

I'm not medically trained.

[siamesefrmsiam in reply to Sleepybunny]

Thank you very much for the links.

My folic acid was tested in August after starting vitamins, was 678 ng/mL (280-791). My iron was never tested. My B12 was 161 pg/mL (232-1,245) at diagnosis in February, then 852 in August.

[FlipperTD]

Scientist, not medic. Often in error, but never in doubt, and doesn't know when to stop...

Macrocytosis caused by a deficiency of B12 or folate will respond to adequate replacement quite promptly, assuming nothing else is hampering recovery. A reticulocyte response can be seen within a week. The greater the anaemia, the greater the response. However, as red cells have a lifespan of about 4 months, then it takes that long to get the old cells out of your system.

I'm pleased you mention RDW. The RDW will maximise at the half-way point in the treatment, and then return to normal once treatment has been completed.

The MCHC isn't as much use nowadays as in days gone by [40 years or so...]

The MCH, MCV and RDW are of considerably more value.

Response to iron deficiency takes a bit longer to get a response but it's still quick.

One further thing to consider is that hypothyroidism can be associated with a macrocytic blood picture, but that resolves following treatment.

When treatment for B12 and/or folate is commenced and a response is seen, iron stores can become depleted, so it's a good idea to make sure your doctor keeps an eye on this.

It is unwise to start any sort of treatment without discussing it with your doctor. Iron, in particular, isn't something where 'more is better'. It's toxic.

Good luck!

[siamesefrmsiam in reply to FlipperTD]

I appreciate a scientist’s perspective. The B12 is obviously helping, but something is still missing. I will have my doctor do iron and thyroid testing, as these have not been looked at. Thank you again.

[FlipperTD in reply to siamesefrmsiam]

It's good to know things are improving. A slow but steady process. Stick with it!