Pernicious Anaemia Society
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B12 defiency?

Hi,

My recent B-12 level was 170 ng/l ( range 120-900) My ferritin is 11 ng/ml (15-300)and folate is also 11 ug/L (2.9-9999) For the past year my MCH level has been above the range 33.3pg (27-32) and MPV sitting around 99.8 fl (80-100) My last Vit D level was 22.

However haemoglobin is 128 g/L (115-165) I have also had low calcium.

I do have adenomyosis and am currently dealing with an eating disorder. However even before my ED my B-12 was 212 at its highest. My ferritin level has dropped to single digits and I have been taking iron supplements from the doctor but it never seems to improve. I am also pescatarian.

In the last few weeks my symptoms have worsened. I have been getting palpitations, extreme fatigue, fogginess, feeling like I’m floating, dizzy, confusion, tintinus, muscle weakness esp in legs and hands, eye twitching, nausea, depression/anxiety/tingling in hands and feet, feeling very cold, bleeding gums, vision issues, stomach pain, sore mouth (ulcers). I also have Raynaulds pretty bad (everyday) some of these are chronic and some are new or worsening.

The list goes on. I’ve been asked to discuss my recent blood results next week with my GP. However I think he is going to only concentrate on the iron. I have mentioned b12 to other GP’s before and they fob me off with, you’re in range blah blah

I am aware that my eating issues aren’t helping but I can’t just up my diet and surely they can’t suggest that to me? Do I have cause with my ED to ask for injections? I am in mind to just ask for a referral to a blood specialist and go privately because I am beginning to feel really unwell.

Any advice would’ve appreciated

Thanks 🙏🏻

4 Replies
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Hi Hidden if you are pushing to get B12 treatment the British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I cannot comment on the other issues you mention as I'm not a medically trained person but I've had P.A. (a form of B12 Deficiency) for over 45 years.

I wish you well.

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Thank you healthunlocked.com/user/cli...

I am going to take my Mum with me to the appointment. She doesn’t mind speaking up.

It’s so frustrating, especially as locally since October they lowered the bottom level of the range to 120 from 160 - which in itself was low enough. The last GP I saw would not listen to me. However this one seems a bit more open minded so we shall see. I just want to be prepared, as I can’t go on feeling this unwell. I don’t understand how they think 120 is acceptable 🤨

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Your B12 is very low and and, as you are obviously aware, you have many of the classic symptoms, as well as very low vitamin D.

It might be worth putting your concerns in writing to your GP, so that they are on record before making an appointment. Below is the latest BMJ research document that also points to information regarding frequency of injections for the neurological symptoms you've described as these need treatment with injections without delay to avoid permanent damage:

"every other day until no further improvement (British National Formulary)."

The link is to the BMJ summary only but GP would probably be able to access the full document:

bmj.com/content/349/bmj.g522

Not sure, but gynaecological cell changes could possibly be connected with B12 def. This is mentioned in the Sally Pacholok film:

healthunlocked.com/pasoc/po...

Conclusion of the Dutch research in the pinned posts:

"vitamin B12 deficiency can cause many different symptoms, among which are serious neurological problems. The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."

Very best wishes for better treatment......

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Yes B12 very low. I think doctors wait for patient to die before they start treatment....sorry no offence.

You definitely need B12 at the least. Folate and Ferritin should also be in good range.

Your doc is not taking you seriously and not giving proper treatment, but you’re not the only one, this is very common and applies to most doctors.

We’re all suffering at their negligence.

Sorry I can’t comment on your other conditions as I don’t know much about them but low B12 is a silent killer.

Take someone with you to your doc with list of symptoms and your levels which are all very low.

Is he waiting for you to go under the minimum level before he treats you.

I had same case with B12, Vit D, Folate and Iron.....ended up self injecting and getting advice from pharmacy for the rest and buy my own as doc refused even when I insisted.

My old GP who was great unfortunately retired.

Sorry to hear about your condition.

If you take someone with you and go equipped with information on B12 and looking at your other levels which are very low I’m sure they will agree.

They don’t know much about B12 treatment....you have to research and educate them.

Wish you well.

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