Any advice appreciated as losing faith in my Dr!

[Bamboo71]

I’m new to this so just looking for some advice as I’m losing faith in my Dr! I got some blood tests done and my Dr said I have PA as my B12 was so low. I got 5 loading doses and told next injection in 12 weeks. I wasn’t told to take any cofactors with my injections? Since my injections I’m still feeling some symptoms & definitely neurological ones too. I’ve started taking folic acid 5mg daily as my friend said my folate was low. The Dr said all my other levels are fine? I’m querying my iron levels too?

[fbirder]

Ignore your friend. They may be killing you.

If your folate was low then it would have showed up in your blood test (the folate test is much more accurate and precise than the B12 test). Taking 5 mg of folate should only be done if prescribed by a real doctor. Too much folate may be harmful. ncbi.nlm.nih.gov/pmc/articl...

Your B12 was very low, indeed, too low to measure. That means it's going to take longer for things to repair themselves.

However, with neurological symptoms you should be on a different regimen for B12 injections. Speak to your doctor and ask them to put you on the dosing schedule as described in the BNF for people with neurological symptoms.

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months.

So your loading doses should have continued for at least three weeks (at three a week). Longer, if your symptoms were still improving. And your maintenance doses should be every 8 weeks, not 12.

It won't harm to take a folic acid supplement. But you don't need such high doses. Get a supermarket supplement. That will be 400 mcg a day. That amount is recommended for all women of childbearing potential, so it should be safe.

Your ferritin looks OK, so you shouldn't need any iron supplements. Having too much iron can also be harmful.

[Bamboo71 in reply to fbirder]

Thank you, I’ve quoted all the guidelines to my Dr and he says there rubbish! Says nobody needs an injection less than every 12 weeks! I’ve now got heavy feeling weak arms and my elbow joints are sore. My hands go numb and pins & needles more often especially when I wake up. The Dr is checking me tomorrow for carpel tunnel syndrome? Isn’t this a B12 deficiency symptom? He’s also rechecking my bloods next week but I thought once you’d received injections a B12 test was irrelevant?

[wedgewood in reply to Bamboo71]

No , Carpal Tunnel syndrome is not a symptom of B12 deficiency . But strangely , Bursitis in my shoulder was cured with B12 injections after months of unsuccessful physiotherapy and manipulation ! Or was this just a coincidence?

. ( This happened after I had the P.A. diagnosis and had just completed the loading injections )

In the U.K. guidelines it is stated that it’s not required to check B12 readings once treatment has commenced .it’s a waste of time . Your B12 readings need to be high and stay high . The treatment for Pernicious Anaemia is LIFELONG , with injections that are frequent enough to keep the symptoms at bay . Pernicious Anaemia cannot be cured . It is an autoimmune condition , that often occurs with another. There are over 100 autoimmune conditions ,I need an injection every week . I know someone who needs a daily injection , another needs monthly, and my neighbour manages well on 3 monthly. Everyone is different . We do not know why yet — maybe to do with how long one has had the condition — genes etc. Research is needed .

You must know now that the medical profession is very ignorant on the subject of P.A. . That’s why the P.A.S. was founded by Martyn Hooper about 10 years ago . And thank the Lord for it too !

[Bamboo71 in reply to wedgewood]

Thanks, yes I’m learning very quickly that the medical profession are very ignorant of B12 deficiency.

I meant the weakness in my arms and sore elbow joints were a B12 deficiency symptom?

[Bonjourtristesse in reply to Bamboo71]

I have weakness in my arm which improves after b12 injection.

[Cherylclaire Forum Support in reply to wedgewood]

I have read that B12 can be used in bursitis treatment. It was a long time ago, but I think it was injected directly into the joint in the same way as steroid injections get used. Bamboo71 : Carpal Tunnel syndrome is not a B12 deficiency symptom , but numbness and pins and needles in hands misdiagnosed as Carpal Tunnel could be - I'm not sure I'd trust any diagnosis from a GP who has already chosen to ignore all the medical guidelines for B12 deficiency: NICE, BCSH, BNF.

[wedgewood in reply to Cherylclaire]

Well the shoulder with bursitis was the left one, and the B12 injections were into my left arm . Carpal Tunnel syndrome only affects the middle, index finger and thumb , not the ring or little finger.

[Gambit62 Administrator in reply to wedgewood]

Wedgewood - Carpal tunnel can definitely be aggravated by B12 deficiency, as can tarsal tunnel

[fbirder in reply to Bamboo71]

"Thank you, I’ve quoted all the guidelines to my Dr and he says there rubbish! Says nobody needs an injection less than every 12 weeks! "

😱😱😱😱😱

That's terrible.

Write to your doctor. Include a printout of the BNF entry for hydroxocobalamin - bnf.nice.org.uk/drug/hydrox...

And also this paper - onlinelibrary.wiley.com/doi...

with this section on the front page highlighted.

Neurological

presentation (peripheral neuropathy, subacute combined degeneration of the cord) may occur in the absence of haematological changes, and early treatment is essential to avoid permanent neurological disability

Include bullet points -

■ My ongoing pins and needles in my hands is quite probably peripheral neuropathy.

■ This is a neurological symptom of a B12 deficiency.

■ The BNF says that I should be receiving B12 injections every 8 weeks.

■ The BCSH say that I am at risk of permanent nerve damage.

■ Why am I being denied appropriate treatment?

■ Please change my treatment to injections every 8 weeks. I also require a referral to a neurologist.

Don't pad the letter out. Say what's wrong; provide evidence for the correct treatment for that thing; demand the correct treatment.

[Gambit62 Administrator in reply to Bamboo71]

Bamboo71 - if writing to your GP as suggested by fbirder (and please copy anything to your GP to the practice manager) has no effect then you could try contacting your local PALS service for support ... but at the end of the day if your GP is that bloody minded then you might be better off looking for another GP.

[mabbutt]

Hi there - have a look at this website - Tracey Witty has become a guru in B12 especially in terms of approaching Doctors - b12deficiency.info - such an excellent source of information

[Lotterypip]

You would need another load of B12 you only had five. Say another 6 over two weeks. The thing about PA is the load dose. You will find after another 6 then one every 1/2 months. You will find your folic acid and your iron levels increasing in a good way