Tired of being ill.

[Panpal]

Had Vit B12 jab last Wednesday. By Saturday struggling with muscle tiredness and numbness in hands and feet at night. Also hot flushes and sweating.

Saw practice's head GP today and he is getting me back in to get bloods taken on Friday which is great. I am afraid that they will come back normal and not highlight the problems I am having. Vitamin D has not been tested since January last year when it was low.

I am managing but feel my quality of life is gone. Was shattered after going to Dentist yesterday, got home and went to bed.

Really wish GPs had more awareness of difficulties treating Vit b12 deficiency and related problems. It not fair on them either that they are having to deal with frustrated patients.

[Plucky1976]

I live in Canada and am able to self inject instead of having to listen to 9/10 docs tell me my symptoms aren't b12 related🙄🙄. I am lucky that I have a great internal medicine Doctor! He truly is great. I feel for all of those out there that have to wait for the ok from a physician. Is it that some countries need a doctors actual order? Prescription? I guess I just don't quite understand why some people have to wait for their next jab.

[Lindalang2011]

I sympathize with your pain. On top of PA, I also have chronic Lyme Disease that went undiagnosed for years. Lyme tends to steal many nutrients, so I became quite sick before finding out I had PA too. I can definitely relate to the muscle weakness & quality of life being robbed from us. My muscles became so weak I could no longer bother to put makeup on anymore, so I just said to hell with it. There may be things we still struggle with, but we have to continue having faith and INNER strength, even if it’s easier said than done. And if our doctors fail us, we MUST be our own advocates and ready to speak up and fight for ourselves. If we don’t, I doubt they’d ever listen. Thousands of people have went undiagnosed and neglected, as well as under-treated. We’re never alone, and we can be the ones who make a difference. Even 1 voice can help to wake these practitioners up. I will say when I take Vitamin D, it does help the muscle weakness a LOT. Make sure they check your potassium too... ((Hugs))

[Foggyme Administrator]

Hi Penpal. Sounds like your B12 deficiency is being under-treated (because you have neurolgical symptoms and your symptoms are returning before the next injection)

Just wondering if your GP is aware that B12 deficiency with neurolgical symptoms should be treated with a more intensive regime of B12 injections.

Here's what the British National Formulary (prescribing guidelines) say:

Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

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

Your GP will have a copy of the BNF but here's a link in case you want to,print it and take to your appointment:

bnf.nice.org.uk/drug/hydrox...

Note: Refers to the treatment of pernicious anaemia and GP may say ah ha, but you don't have PA. This is a moot point. The treatment for pernicious anaemia is treatment for the B12 deficiency it causes. Ergo, the treatment for B12 deficiency is the same as the treatment for PA.

Also - you mention further blood tests. If your GP is planning to re-test serum B12 levels in an attempt to find answers, be aware that testing following injections is meaningless, since serum B12 levels will be high (sometimes over the top of the reference range) due to the injections. Some GP's assume that this means B12 deficiency no longer exists and stop treatment. This is wrong. Your GP should therefore assess symptoms, not serum B12 results.

Here's some information about serum B12 testing:

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

In your case, the fact that neurological symptoms re-occur so quickly after injections is an indicator that you are being under-treated for your B12 deficiency. Indeed, the presence of neurolgical symptoms means that you should be on the intensive every other day regime of injections.

Suggest you ask your GP to treat you according to the guidelines for those with neurolgical symptoms.

Don't know if you've seen the guidelines for treating Cobalamin and Folate deficiency, so just in case, here they are:

onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BSH) Guidelines for the Treatment of Cobalamin and Folate Disorders)

Your GP may not be aware of these (many aren't) so worth sharing with them if they're struggling to know how to treat you.

Good luck

👍

[Panpal]

It is frustrating however generally my GPs have been reasonable. It is not easy for them they are expected to have knowledge of and deal with all sorts of health conditions. Also who is anyone suppose to get all the information from a patient in 7 to 10 minute time periods.

Ever wondered why Superman and Superwoman wear their pants on the outside, sorry was busy trying to save world and got bit muddled trying to dress this morning!!!!

Hope you will forgive my sense of humour and thanks for your reply. Good Luck to you.

[Panpal]

Thanks to all for your support. I am considering self injecting. Still waiting for appointment with Neurology.

[KimberinUS]

I am hoping you did not have laughing gas at the dentist office, as it inactivates the b12 in the body.

[Panpal in reply to KimberinUS]

No. I had actually emailed the Dentist to let him know I am having problems and waiting to be seen by Neurology.

Thanks.