Confused with diagnosis

[Amr123]

So I am a little unsure of what my actual diagnosis is....

I was diagnosed with polycytheamia nearly 2 years ago which I have now 6-8 weekly venesection for. My initial hb was 195 with a hct of .54!

I regularly see a haematologist/oncologist and with my recent result I had a hb of 130 with normal hct. The problem now is my iron level is 4.3 and a b12 of 160.

I’ve been on alternate day b12 injections and having a iron transfusion on Monday. I can’t believe how much I’m sleeping at the min and how horrendous it’s hit me. Anyone else got experience with this? Would this really class as pernicious anaemia?

[clivealive Forum Support]

Hi Amr123

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Both iron and folate may be needed so please have these levels checked by your doctor.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Amr123 in reply to clivealive]

Thankyou for your reply. My folate is within Norma range.

The only other abnormalities are; iron sats 5, ferritin 8. And my tsh was .48 which apparently my cons wants to relook at in 3 months.

[Dadvatar]

That’s creepy. I’ve just had a full blood test to mainly check my B12 as my daughter tested low and it could be hereditary. Got the results yesterday and they mention I could have polycytheamia as a couple of tests were out. Never heard of it before and and now twice in two days. My B12 was ok. I normally put these abnormal results down to too much red wine.

Your B12 of 160 is pretty low. Someone else on here will point you in the right direction of a diagnosis as my understanding is there has to be a full moon and a W in the day of the week before the NHS will consider a diagnosis. And that’s if all the numbers in the year add up to an odd number.