GP does not believe me

[tvellepern]

It is so frustrating that when I complain of pain I am sent to Radiology and x-rays prove that nothing is broken. After my B12 injections those pains disappear (sometimes after the 2nd or 3rd injection if pain was severe) and both my GP and Hematologist refuse to believe that B12 was what helped. After giving them copies of articles stating that you cannot overdose on B12 they are still concerned with giving me too much. What more can I do? My GP knows me for many years and knows that I don't complain about much. Thanks for any advice.

[EllieMayNot]

Unfortunately, many have to resort to self injecting. If you feel that you really want to work with your GP further on this issue, perhaps if you join the PAS they can assist you in convincing your GP that you would benefit from the B12 injections. Otherwise, you may want to consider taking things into your own hands. It is a very personal decision.

[tvellepern in reply to EllieMayNot]

Thank you for your reply. I am located in the US and don't know if the PAS can help me here. I do get a lot of information from this format and read through every day.

[fbirder]

You ask to see a neurologist.

If the pain is caused by a B12 deficiency then it is because of nerve damage. The best person to diagnose nerve damage is a neurologist, not a GP or a haematologist.

[EllieMayNot in reply to fbirder]

fbirder, I agree. However, my experience with a neurologist was greatly lacking. I brought in my test results (self testing) showing elevated antibodies to myelin basic protein and his final response was, "I don't know what caused that." He ran an MRI and sent me packing without any further investigation. Hoping other neurologists are better qualified than the one that I saw. It wasn't until I saw a functional practitioner that the underlying cause of PA was discovered.

tvellepern, please keep pursuing help until you get a valid answer. Like you, I am in the US. I was able to give my GP the info from NICE and that was when she agreed to every other day injections for me. Otherwise, it would be once a month.

[tvellepern in reply to EllieMayNot]

Thank you for that helpful information. Where did you get the info from NICE? I will certainly try to get that once I hear from you.

[EllieMayNot in reply to tvellepern]

I had to use a proxy server as they only allow access to individuals in the UK. I am going to see if I can download the document and send it to you as a message here on the forum. Just in case that doesn't work, here is the summary page:

Taken from: cks.nice.org.uk/anaemia-b12...

Anaemia - B12 and folate deficiency

Last revised in February 2019 Next planned review by December 2023

Anaemia - B12 and folate deficiency: Summary

Deficiency of vitamin B12 or folate are the most common causes of megaloblastic anaemia.

Megaloblastic anaemia is characterized by the development of larger than normal red blood cells (macrocytosis), with immature nuclei due to defective DNA synthesis.

This results in red cells with a mean cell volume (MCV) above the normal range (greater than 100 femtolitres).

Pernicious anaemia (an autoimmune disorder which results in reduced production of intrinsic factor) is the most common cause of severe vitamin B12 deficiency in the UK. Other causes of vitamin B12 deficiency are rare, but include:

Drugs — colchicine, metformin, nitrous oxide, protein pump inhibitors, H2-receptor antagonists.

Gastric causes — total or partial gastrectomy, congenital intrinsic factor deficiency or abnormality, Zollinger-Ellison syndrome.

Inherited — intrinsic factor receptor deficiency (Imerslund Gräsback syndrome).

Intestinal causes — malabsorption, ileal resection, Crohn's disease.

Nutritional — malnutrition, vegan diet.

Folate deficiency is often caused by problems with dietary intake alone, or in a combination with increased folate usage, or malabsorption. For example:

Drugs — alcohol, anticonvulsants, nitrofurantoin, sulfasalazine, methotrexate, trimethoprim.

Excessive requirements in pregnancy, malignancy, blood disorders, or malabsorption.

Excessive urinary excretion.

Liver disease.

Diagnosis of anaemia caused by vitamin B12 or folate deficiency should be made through history, examination, and investigations, including taking a full blood count, blood film, and measuring serum concentrations of cobalamin and folate.

If vitamin B12 deficiency is found, serum anti-intrinsic factor antibodies should be checked.

If there are strong clinical features of B12 deficiency such as megaloblastic anaemia or subacute combined degeneration of the cord, despite a normal serum vitamin B12 level, serum anti-intrinsic factor antibodies should also be checked.

If folate levels are low, and the history suggests malabsorption, tests for anti-endomysial or anti-transglutaminase antibodies should be done (depending on the local laboratory) to exclude coeliac disease.

Treatment of B12 deficiency in people with neurologic involvement should include:

Seeking urgent specialist advice from a haematologist.

If specialist advice is not immediately available, initially treating with hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then hydroxocobalamin 1 mg intramuscularly every 2 months should be considered.

Treatment of B12 deficiency in people with no neurologic involvement should include:

Initial treatment with hydroxocobalamin 1 mg intramuscularly three times a week for 2 weeks.

Maintenance treatment with hydroxocobalamin 1 mg intramuscularly every 3 months for life — where B12 deficiency is not thought to be diet related.

Maintenance treatment with oral cyanocobalamin tablets or a twice-yearly hydroxocobalamin 1 mg injection — where vitamin B12 deficiency is thought to be diet related.

Treatment of folate deficiency should include:

Prescribing oral folic acid 5 mg daily. In most people, treatment will be required for 4 months. Folic acid may need to be taken longer-term (sometimes for life) if the underlying cause of deficiency is persistent.

Providing dietary advice — good sources of folate are broccoli, Brussels sprouts, asparagus, peas, chickpeas, and brown rice.

[EllieMayNot in reply to EllieMayNot]

Unfortunately, I cannot attach the entire article but the summary page gives the simple statement of "If specialist advice is not immediately available, initially treating with hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then hydroxocobalamin 1 mg intramuscularly every 2 months should be considered."

I have doubts about the every two months statement but maybe I will be able to go that long between injections some day.

Best to you!

[tvellepern in reply to EllieMayNot]

I gave my hematologist a one page article from a highly respected Blood Journal and highlighted the part that read that you cannot overdose on B12. I think he didn't even read the highlighted part and argues that you can overdose on B12 and tried to look it up on the internet and gave up trying because he couldn't find that incorrect information.

[EllieMayNot in reply to tvellepern]

They sometimes seem unnerved when we know more than they do about our own health issues.