I have just re-read the links you’ve posted, I have read them before yet just read them again. I am just so confused by it all if I’m honest, like the information isn’t going in I’m trying so hard to understand it.
My ferritin was 68ug/l (12-300)
Did I do the right thing by asking for the intrinsic factor test? Do you think it’s possible that I am b12d or do you think I’m just folate d and to forget about the b12?
I’m so unsure if I should be demanding referrals, or just dealing with my symptoms myself and taking the folic acid. I feel like I’m fighting with myself, my doctors are not helpful at all.
You have macrocytic anaemia. Possible causes are low B12 and/or low folate.
You have normal levels of B12.
You have low levels of folate.
Logic suggests that your macrocytosis is caused by the low folate. Fix the low folate and see if that cures the macrocytosis. If it doesn't, then investigate other possibilities.
Do you think I should take the folic acid and ask for a MCV test in a few months then? I’ve read it usually takes 4 months to repair. Yet I’m on them for life. Thanks
I hope the folic acid amount was a typo. I'd guess you meant 5 mg of folic acid. That is 25 times the recommended daily intake. It's an amount that I would take for a short while (1 month) to get levels back to normal. After that I'd switch to 400 ug a day (only £1 for 300 tablets fromTesco).
The question is - why is your folate low? Do you have a good diet - lots of green veg, pulses, seeds and nuts? Have you had your calcium levels measured (calcium is involved in the absorption of folate).
After six to eight weeks I'd ask for MCV, folate, B12, iron and calcium to be measured.
Oh lord yes... sorry I did mean 5mg not 5g. I’m not sure why it’s low, I’ve not actually had a sit down convo with the doctor yet, it’s all been over the phone, him arranging more blood test etc. I am going to book a sit down appointment with a doctor once the IF is back.
Yes my diet is very balanced, lots of homemade foods, veg meat etc. Stew tonight. I am on carbamazepine for my epilepsy and I think that can effect folate and b12 and I’m guessing that’s why it’s for life. Yet the nurse said today that once you’re deficient you’re deficient so that means taking them forever but like you said, I think 5mg for a few months then top up with 400ug should be sufficient. I will request that my bloods are redone in 8 weeks thank you. I also have IBS, to the point where I don’t have any bowel movements for 3-4 weeks sometimes, no matter how much prescribed meds I take for it it’s just getting worse. I think it’s a narrowing of my small intestine but nothing has been done about it. So I’m guessing absorption will be an issue due to my rubbish gut.
"I am going to book a sit down appointment with a doctor once the IF is back."
IFA test is used to help diagnose PA (Pernicious Anaemia) but test is not always reliable. If IFA (Intrinsic Factor Antibody) test is negative or normal range, it's still possible to have PA. If you look at flowchart in my post above, it mentions Antibody Negative PA. Some UK Gps may not be aware of the possibility of Antibody Negative PA.
Although your B12 is within range, it is still possible to have the symptoms of B12 deficiency with a normal range B12 result.
See Point 5 in link below and BMJ B12 article and BSH Cobalamin and Folate Guidelines for more info on being symptomatic with normal range B12.
My understanding (I'm not a doctor) is that it's important to make sure that a patient who is suffering B12 deficiency has B12 treatment started before starting folate treatment. I think this is because folate treatment may correct macrocytosis in red blood cells and therefore mask one of the possible signs of B12 deficiency. If signs of B12 deficiency are masked then there may be a risk of deterioration . See link about folate deficiency in post above.
I did find a few articles that linked B12 deficiency with seizures.
PAS (Pernicious Anaemia Society)
If you want to know more about PA, worth looking at PAS website (link in post above). Some PAS articles are only available to PAS members so may be worth joining to access them.
Thank you so much sleepybunny, I am going to read and print most of these out and take the relevant facts to the gp. It was me who noticed the link and also my pharmacist as I kept going to him with different symptoms and he said to get my b12 checked due to my meds. Then once I started looking into it it did mention anticonvulsants can affect it. I’m not sure what auto immune disorders are yet I’ve noticed on her thyroid is, my mum and Nan have thyroid problems, my sister had cystic fibrosis which when she was on a certain medication caused her to have haemolytic anaemia. Other than that I’m not sure. My serum TSH was 0.67 mu/l (0.3-5.5) so that was within range. After work tonight I will read all the links again and print them off.
I have had high MCV and MCH at every blood test I have had. Also low folate depending on whether I have just finished the usual 3 months folic acid. Have really bad neurological symptoms. Have b12 jab every 8 weeks. Doctor has put me on 5 mg folic acid for good. It takes 3 months for blood cells to be replaced so not expecting miracles just yet. The raised MCV and MCH have been going on for 7 years. I had to raise my concerns with the doctor before she would accept that I was being under treated. No suggestion I need more b12 yet but you have to take baby steps with these ignorant doctors.
It’s a nightmare isn’t it. Funny thing is that my MCV and MCH both high, we’re on an old blood test I had in August, I was told everything was normal. I basically asked the nurse to print off my August bloods results, I didn’t tell her why. But secretly I was checking up on the doctor. Then just lately had the folate b12 MCV done again only because I asked for it, yet if the doctor had half a brain he would of investigated the abnormal results I had back in August. We shouldn’t have to feel like this. It may be minor to doctors as they just think “oh they’re deficient it’s only vitamins”, but goodness it affects us daily and it’s not fair. I feel like I’m making a mountain out of a molehill but I just don’t trust Gps. I’m so conflicted with what I read on here to what he says. Good luck with your b12 shots, I hope they pick you up and you start to feel better soon x
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