Pernicious anemia - low folate - feeling worse, help

[kieraowl]

I'm new here! But desperate for help.

I recently went to the doctor, had a series of blood tests, and was diagnosed with pernicious anemia caused by low folate. (I've been having some building work done in my house, haven't had a kitchen for a long time, and my diet has suffered). I haven't actually seen the doctor - the receptionist rang me.

I have been put on 5mg folic acid daily. Started taking this late last week.

The last couple of days, I have been feeling far, far worse. I'm so tired and weak I can't get out of bed. My head is completely foggy. My legs feel like they don't work. Is this normal? Or do I need to get in touch with the doctor again?

[clivealive Forum Support]

Hi kieraowl are you being given Vitamin B12 injections for your Pernicious Anaemia?

[fbirder]

There’s some confusion here.

Pernicious Anaemia cannot be caused by low folate. It does result in low B12. Both low B12 and low folate can cause macrocytic (large cell) anaemia. Have you had your B12 tested, if so what was the result?

Your symptoms could be caused by low folate, but are more commonly caused by low B12. If it is the latter then you need to be given B12 injections.

Here’s a document describing how B12 and/or folate deficiencies are covered by East Yorkshire NHS. Ask your doctor to follow their recommendations.

hey.nhs.uk/wp/wp-content/up...

[kieraowl in reply to fbirder]

I only spoke to a receptionist, who didn't tell me anything about B12. She just said I had macroblastic anaemia caused by low folate (which I guess is wrong, from your information), and I needed to go onto 5mg of folic acid daily. I have been taking this for a few days, and now feel a lot worse.

[fbirder in reply to kieraowl]

Megaloblastic anaemia is the same as macrocytic anaemia. It can be caused by low folate, but also by low B12.

Take the advice of Hidden and ask for a printout of your results, or find out if you can access them online. Then check the B12 result.

The serum test for B12 is notoriously inaccurate and imprecise. A lot of people can show the symptoms of a B12 deficiency whilst still being within the ‘normal’ range. Many doctors don’t know this, so if the normal range is 100 - 600 they will declare you OK even if your result is 101.

[Patjamber]

Dear god how do these receptionists get away with it. In my surgery they are not allowed to give any results unless they are all clear. They certainly wouldn’t be lower to inform you on your medicine. Listen too people in here and follow there advise most of it is because we old handlers have been where you are. Good luck x

[kieraowl]

I am going to call them in a bit. I don't really understand what is happening to me. I feel terrible. And a bit scared.

[kieraowl]

OK, I finally got through after having to wait because they were on lunch hour. I have a telephone consultation with a GP on Monday afternoon. What do I need to ask? I have started to make a list.

1. What is actually wrong with me - is it macroblastic anaemia?

2. What are my folate and B12 levels?

3. Do I need B12 treatment as well as folic acid?

[spacey1]

That sounds like a good list! The info you were given by the receptionist sounds very odd. You need your B12 levels as well as the folate ones, because taking folate can mask the symptoms of low b12 and allow things to get very much worse. If your b12 is low, you need the loading dose of six injections over two weeks and then top-up injections at regular intervals after that. Good luck, and don't be scared. Ask questions on here; there's bound to be someone who has experienced it before, and there's a huge amount of support