Test results

[Xxvickieexx]

Got my test results today could someone tell me what they mean? Are the b12 numbers low enough that 5mcg of cyanocobalamin wouldn't make a difference?

Serum b12 196.6

Serum folate 4.20

Serum ferritin 66.1

[Jose651]

Hi Xxvickieexx,

Has your GP talked to you about your B12 and Folate results? You are deficient in both.

More experienced members will get back to you.

👍

[Xxvickieexx in reply to Jose651]

She has told me they are low but on a previous thread she is telling me that it is due to my diet I was wondering if the numbers are only just low or quite low? Thanks

[Jose651 in reply to Xxvickieexx]

Have you spoken with her since you got results today.

[Xxvickieexx in reply to Jose651]

Yes she prescribed me 5mcg of cyanocobalamin and 5mg of folic acid I have previously posted and doctor said it isn't an absorption problem just my diet even tho I eat meat 2-3 times a week , guess I just want to know if it's just borderline deficient or if I need to be worried about an absorption problem.

[Jose651]

You are BELOW RANGE, I would make sure to get injections immediately with your symptoms.

She is worse than useless my dear.

Get in touch with The PAS society and they will advice her/ teach her the correct way to treat a patient with B12 deficiency, God I'm mad. 😡

[Galixie]

Both your B12 and Folate levels are low. Your Mean Cell Volume is technically within range but it's at the high end of the range. While you don't yet have obvious hematologic markers of anemia (your hematocrit is good and they almost always zero in on that result first), it looks like you're starting down that path.

Diet could play a part in your deficiencies if you have celiac disease. You could also develop deficiencies if you have ulcerative colitis, IBS, or any other condition that would hinder the absorption of nutrients from food. I don't know how your area is with fortifying foods. In the US, just about every bread and cereal product at market has been fortified with folic acid. That makes it very rare in the US for a person to become deficient in folate through diet alone. The classic autoimmune version of pernicious anemia (where intrinsic factor antibodies are produced) does not affect the absorption of folic acid. But there are multiple things that can lead to deficiencies and it is possible to have pernicious anemia and also have a co-existing deficiency in another vitamin.

It really doesn't sound, to me (and I should remind you that I'm not really qualified to give an opinion), like your diet is at fault. It might be a good idea to ask your doctor to investigate non-diet related causes. You could start a food diary to bring to her to show that you haven't been starving yourself. You could also ask for a more complete vitamin panel to be run to see what else you are potentially low in. Have you asked to have any further tests run to see if it is pernicious anemia?

The tests most commonly helpful in determining if it is PA are:

Serum B12 (which you've already had done)

Homocysteine

Methylmalonic acid

Parietal cell antibodies

Intrinsic factor antibodies

The antibody tests are only partially helpful. A positive for parietal cell antibodies can indicate PA or a problem other than PA (but if it is positive, it does mean *something* is amiss).

A positive for intrinsic factor antibodies is considered definitive and would give you an iron-clad diagnosis of PA, however about half of people who have PA never test positive for intrinsic factor antibodies.

In short, the tablets are probably not going to be much help. You are faced with the dilemma of trying to decide if you want to self treat (such as with sublinguals or injections you source yourself) and risk never getting a proper diagnosis or treatment, or following the directions of taking the tablets for 2 months and going back to see how much they haven't helped you, or pressing for more immediate action, or getting a second opinion elsewhere. Only you can decide what is right for you.

[Xxvickieexx in reply to Galixie]

I am in the uk and would say I follow a balanced diet I have recently lost weight due to a change in diet but I have been following this for over a year now and if anything I am still over weight so don't know why the doctor thinks it is diet related she refused to do any other tests and basically shouted at me to improve my diet or I will get nerve damage she didn't seem to be bothered about the pins and needles and numbness which I went to her about in the first place I am hoping to get a second opinion but struggling to get an appointment atm

[Sleepybunny]

I may have mentioned before that local CCGs for those in England should be able to say if local NHS area is following the BCSH Cobalamin and Folate Guidelines. Not sure of equivalent in Wales, NI and Scotland.

nhs.uk/servicedirectories/p...

Contact details should be shown when you click on link for correct CCG.

MPs may also be able to find out from local NHS whether BCSH Guidelines are being followed. Mps can be very helpful in getting answers from officials when members of public have difficulty.

NHS england may be able to help with info.

england.nhs.uk/contact-us/

The BCSH Cobalamin guidelines make it clear that symptomatic patients should be treated even with levels in normal range and both your B12 level and folate levels are low.

FBC (Full Blood Count) Results

MCV 97 (80 - 100)

MCH 31.6 (27 -32)

Do you have other less recent results for MCV and MCH? I found it very useful to track changes over a period of months /years. It can show if MCV and MCH are increasing or decreasing. Your MCV and MCH are close to the top of the normal range. High MCV and high MCH can indicate the possibility of macrocytosis. Some medics think macrocytosis has to be present in order for a diagnosis of B12 deficiency.

I think the BCSH Cobalamin and Folate Guidelines make it clear that it is not necessary for macrocytosis to be present for a diagnosis of b12 deficiency.

patient.info/doctor/macrocy...

You mentioned you are currently on oral cyanocobalamin and folate. 5mcg (micrograms) seems a very low amount of B12 and you are also taking 5mg of folate.

Taking folate can sometimes mask B12 deficiency. See link below.

patient.info/doctor/folate-...

There is info in the Management section about B12 deficiency being masked if large amounts of folate are given without adequate treatment of an existing b12 deficiency. Your B12 results are low. To my understanding if a patient has a "low" result they are deficient.

I think the problem of the risk of masking of B12 deficiency if large amounts of folate is taken is mentioned in BCSH Cobalamin and Folate Guidelines.

It's mentioned in the link below in section on Folate Deficiency

nhs.uk/Conditions/Anaemia-v...

"she refused to do any other tests and basically shouted at me"

This happened to me and triggered depression. I was saddened by how I was treated..it makes fighting to get answers so much more difficult.

I complained politely but felt that from then on I was considered a difficult patient. I also felt forced to treat myself with B12.

I'd urge you to speak to the PAS if you haven't already done so.

pernicious-anaemia-society....

01656 769717

I am not a medic just a patient who has struggled to get a diagnosis and wants people to have useful info.

[Xxvickieexx in reply to Sleepybunny]

Thank you for all the info unfortunately I am in Scotland and the search in the service directory isn't available to me. I also haven't had any recent blood tests done the last ones would have been during pregnancy about 4 years ago and don't know if that would have included a full blood count. Just very confused there is a lot of information to take in the doctor also told me my levels are not that low that she would be concerned to do any other tests which is why she said it is my diet that is contributing to the low levels.

[Jose651 in reply to Xxvickieexx]

Would it be possible to take someone with you to see your GP.

Sometimes it can help.

Please re read the replies to your previous posts X. These are from people who have been where you are now. Their advise should be listened to.

[Sleepybunny]

I think Jose651 suggestion to take someone with you is a good one especially if they are supportive and understand your health problems. They can also take notes and ask questions.

My experience has been that medics are kinder and politer when someone else is present.

Have you looked into whether an advocate might be useful in your case?

nhs.uk/conditions/social-ca...

seap.org.uk/about/aims-and-...

voiceability.org/support-fo...

siaa.org.uk/

Scottish Independent Advocacy Alliance

gov.scot/Topics/Health/Poli...

cas.org.uk/about-us/partner...