Help with talking to GP/interpreting results

[Kookookichoo]

Hi, I have just above low (267 ng/L) B12, just above low ferritin (21 ug/L) and historically low folate (which GP dismissed at the time, and hasn’t tested this time). GP says they are all above normal but I’m clearly showing all the symptoms of low B12/iron (extreme fatigue, tingling in fingers, toes and tongue (and sometimes whole body), nominative aphasia, mood swings, slurring words, muscle weakness and persistent infections). I’ve written to my GP using the B12 deficiency page - following that my GP asked for a IFAB test which has come back negative. I’m seeing her to discuss the results next week and want to go armed with the right argument, she will potentially do a loading dose of B12 but has to run it past the senior practice GP who is famous for saying no to everything. Is the fact that iron, B12 and folate are in the very low normal range significant? Does anyone have any evidence I can present to her to show that? If she says no I am happy to buy B12 and inject it but what should I do about the iron and folate levels? She tested thyroid antibodies and they came back at <20 iu/ml so Hashimotos doesn’t look likely and my TSH levels are in the normal range. What else could I ask her to test (she can’t do more reliable B12 tests)

[clivealive Forum Support]

Hi Kookookichoo

It is 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

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.

Your doctor should be treating your symptoms not just looking at the computer screen.

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 her 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'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

​

[Kookookichoo in reply to clivealive]

Thank you! I’ve sent her the evidence on nerological symptoms and the limitations on the B12 test, she has agreed to do a loading dose of the senior go agrees, I’ll find out on Tuesday. Unfortunately local guidelines are only 5 treatments for a loading dose and she’s refusing to do more than that, especially as the results are inconclusive. I have a friend who self administers who has ordered me some and is going to show me how to inject. I’m good at eating folate rich foods but I’m assuming it would be good to buy some folic acid and iron tablets to support the B12, if she won’t presceibe them.

[clivealive Forum Support in reply to Kookookichoo]

Well done for being persistent.

Have a word with your local pharmacist about folic acid and iron supplementation as often they are more knowledgeable about these sort of things than doctors.

Personally I have taken 1 – Folic Acid 400μg

and 1 – Iron Ferrous Fumarate 210mg tablet for more years than I can remember.

Let us know how you get on with the loading doses.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 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.

[Kookookichoo in reply to clivealive]

Thank you, I really appreciate that info. I had no choice but be persistent, the symptoms are so bad I can’t live like this any more -no social life, can barely work.

[Gambit62 Administrator]

a) are you being treated for hypothyroidism or were the tests to rule out hypothyroidism - not clear from your comments above - and it can make a difference to TSH range if you are being treated.

b) you really need to refer your GP to the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies which they can access through the BNF but you can also find a copy here

onlinelibrary.wiley.com/doi...

in this particular instance I would highlight the limitations of the IFAB test - that it produces a false negative 40-60% of the time depending on the assay method so is a long way from proving that you don't have B12

You could also highlight the comments on folate deficiency - if it isn't dietary then that implies an absorption problem and that should raise suspicions that B12 absorption, as well as iron absorption may also be affected.

Ranges are averages so have their limitations if they are applied by to individuals. People do vary and in the case of B12 they vary a lot which means that taken as a single measure serum B12 will miss 25% of people who are deficient (and pick up 5% who aren't). Macrocytosis also isn't a good marker as it isn't present in 25% of people who first present with B12 deficiency.

As you have neurological symptoms the guidelines stress the importance of prompt and aggressive treatment. One loading dose may show a difference but it also may not - particularly a the regime for neurological involvement is much more aggressive than that when there isn't neurological involvement:

neurological involvement: 3x weekly until symptoms stop improving (review at 3 weeks) then maintenance 2 monthly

no- neurological involvment: 3x weekly for 2 weeks then maintenance 3 monthly.

[Kookookichoo in reply to Gambit62]

Thank you, that’s very helpful. She was ruling out Hashimotos or thyroiditis as a possibility, and it looks like it isn’t that with all the thyroid tests coming in well above normal. There is good reason to suspect PA as my Granny and aunt had it. She won’t budge on the 5 loading doses as that is local policy, so I have ordered my own to continue doing it. It’s also local policy to only top up every 3 months, rather than once a month as per guidelines, GP is also very clear this is non-negotiable. I have heard that Gloucestershire is particularly bad in this respect. Is there any other test I can have to rule out or confirm PA? I don’t want to assume it is this if it could be something else.

[Gambit62 Administrator in reply to Kookookichoo]

no wonder people feel that the NHS is failing if treatment just ignores professional guidelines. Glad that you have managed to source your own B12 and are comfortable taking control of your own treatment

[Kookookichoo in reply to Gambit62]

The word “postcode lottery” is bandied about a lot so it’s almost become a cliche, but it’s actually a real issue. I’m very lucky to know other people battling the same system, and that forums like this exist. Thank you very much x