Joint pain

[jomorgan1605]

I was diagnosed earlier this year I had 6 loading doses and was on folic acid for a while, I now have a injection every 3 months, which I have discussed this with my doctor but they just say it’s the correct dosage. I get leg aches and feel tired a lot. I now wake up in the night with pain in my shoulders and numb arms and hands. Some days I feel as though my head is full of cotton wool and feel generally unwell. What’s the next step?

[clivealive Forum Support]

Hi jomorgan1605 are you in the U,K?

If you have P.A. and have neurological symptoms the N.I.C.E. guidelines say that injections should be given every eight weeks - not twelve.

Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

It may be that you still need to supplement with folic acid as this and the B12 you are having injected help your iron to make red blood cells and function properly in your body. Ask to have your Folate level tested.

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

[Gambit62 Administrator]

options include:

a) speaking to your GP and pointing out the different regime for neurological involvement

b) supplementing NHS treatment - eg by use of sublingual tablets/sprays, nasal sprays or skin patches - no guarantee they will work but they do work for some and also give you the opportunity to try different types of B12 to see how you respond to them.

c) self injecting if other forms of supplementation don't work

However, if not done already would suggest you also get checked out for auto-immune thyroiditis - 40% of people with auto-immune gastritis seem to go on to develop auto-immune thyroiditis. Ideally that means testing for antibodies not just TSH (possibly supplemented by T4 and T3).

[KimberinUS]

Im going to suggest a full iron panel. If you are a menstuating female schedule this for apoox 5 days after begining of your cycle. Our serum iron and ferritin fluctuate with menstruation. Additionally, if your white bllod cells are in range but at higher end, you could have a chronic infection such as h pylori.

Our body can have higher ferritin with a chronic infection that makes a doctor think our iron is fine even though its not.

niddk.nih.gov/health-inform...

Some symptoms of iron deficiency include, general fatigue, lack of contentration and motivation, restless leg syndrom, poor sleep quality, issues walking up a flight of stairs, breathlessness, pain, ect, ect, ect.

If folate and b12 ok, i would test for iron. In order to get an accurate result you need to stop taking any and all iron suppliments for 5-7 days. This includes iron pills, multivitamins with iron, ect.

Stopping iron for 12 to 24 hours prior to a test gives results for how well you are doing WITH the suppliments.

healthline.com/nutrition/ir...

andersenchiro.com/Subclinic...