Help with gp follow up

[jandaly]

Hi everyone , I hope one of you well informed people out there can help me . I posted in February after having B12 levels again, but my gp would not start course of injections as it was within normal range at 243 (200-900). I stopped all supplements and had re-tested at end April, reading now 210 (200-900). It has gone down by 33 points since Feb, and to my mind, will continue to do so. I called for results, was told again, it was within normal range. I have apt to see gp at end May, but as I am feeling pretty horrible at moment think it will be sooner. I have so many symptoms that could be related to B12 deficiency. I am a type 2 diabetic, have coeliac disease, MGUS, GERD, and osteoarthritis. (I feel sure my gp thinks I am a hypochondriac ( maybe you've also experienced that) . I have been taking Omeprazole for many years ( a PPI) , and also Metformin for at least the last 5 years.But I want to go armed with as much info as possible to take to my gp, but there is so much that I don't know which is best. Have any of you had success on presenting info to gp , mine is normally quite understanding, but I feel she is digging her heels in about this

[clivealive Forum Support]

Both the omeprazole and metformin will have an adverse affect on your B12 level.

False normal B12 results and the risk of neurological damage

(U.K. N.E.Q.A.S Haematics.org.uk)

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

You don't say what your symptoms are but if they are neurological then the treatment of the above "clinical findings" would apply.

Your doctor should then look at the N.I.C.E guidelines which will tell her how she should be treating you.

Click on the link below, then on "Scenario Management" then on "Treatment for B12 deficiency".

cks.nice.org.uk/anaemia-b12...

It is also important that your Folate level is monitored as this works with B12 and helps your iron to make red blood cells.

Make a list of your symptoms and present this to your doctor together with the guidance notes and ask her to treat you according to your symptoms and start you on loading doses "until there is no further improvement".

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 am not a medically trained person but I too had to "fight" a one size fits all doctor, so I wish you well and hope you get the treatment you need and deserve.

[jandaly in reply to clivealive]

Thank you for all that info, clivealive, for all that info. I have numerous symptoms which could all point to various conditions, but weighing it all up, I am sure in myself that I do a deficiency in B12. My folate level jn Feb was 24, reduced now to 13, ref range ( 2-17) , so has reduced significantly. All other blood tests do not seem remarkable, MCV slightly raised, MCH also slightly raised from before. My symptoms include the extreme fatigue, could sleep 3-4 hours in day despite having slept ok at night, clumsiness, brittle nails, tinnitus, restless legs, numbness & tingling in feet mainly, feeling the cold more, bumping into things, bowel problems, sore tongue, unsteadiness, loss of balance, concentration, unexplained weight loss , digestive problems, the list goes on. I will go to my gp armed with all this info and try to stay calm & confident , although this is not always easy when trying to confront a professional , who already knows it all. I know that B12 is water soluble so it would be impossible to overdose, so I think I will go along the lines of asking for a therapeutic trial to see if my condition improves, I have nothing to lose , I guess . I will keep all informed on how I progress , Thanks

[clivealive Forum Support in reply to jandaly]

Well done and please do keep in touch - we love to read "success stories" on this forum

[Gambit62 Administrator]

Also, you have a number of risk factors that make a B12 absorption problem much greater than it is for the general population namely: coeliacs, use of metformin, use of PPI.

[Foggyme Administrator]

Hi Jandaly. Here's a link to the excellent B12 treatment review that Hidden mentioned (written by a haematologist and published in the Blood Journal):

bloodjournal.org/content/bl...

Also...you have neurological symptoms so your GP should prescribe immediate B12 injections - even if your B12 is within 'normal' limits (6 x loading doses and then injections every other day until no further improvement - as per treatment guidelines issued by the British Committee for Standards in Harmatology (sorry, on phone so can't access that link at the moment). But...

Here's a B12 treatment alert that you can print and show to your GP. Instructs doctors to treat immediately with B12 injections if neurological symptoms of B12 deficiency are present (you have these - and many others too) - even if B12 levels are within normal limits. Your GP is probably not aware of this. Here's the link to that alert:

archive.is/hbPHE

If you GP is still reluctant to treat you post again and we can help with more information and evidence, together with tips about what arguments to present to your GP.

Good luck 👍