B12 Deficiency & Vitamin D Deficiency & Polymyalgia Rhumatica!

[Mariemcdo]

Hi group of fellow sufferers.... I was diagnosed with Polymyalgia Rhumatica, Vitamin D and B12 Deficiency and started on B12 loading shots and then three monthly top ups. My B12 has gone from 104 to 505 so a big improvement my Vitamin D levels also improved and in 10 months I have gone from 30mg of Steroids to 1 and am pretty much pain free now (fingers crossed and early days too). I have done and taken part in a lot of alternative treatments including sound therapy, breath works and have seen a natural practitioner of medicine who has prescribed supplements. My question is regarding the chronic fatigue that comes with both Polymalgia and B12 deficiency. It is so debilitating that it is looking likely that I will have to give up my teaching job as I am unable to manage the fatigue. I have to go to sleep at least twice during the day and I never feel as though I am fully awake just totally chronically exhausted all the time. Does anybody have any suggestions or have you had any success with curing the fatigue? Its making me feel very low and I feel incapable of living my life normally. Any suggestions of information would be gladly received. Thank you Val

[rosyG]

I find exercise helps!!

[Mariemcdo in reply to rosyG]

Exercise help with the chronic fatigue?

[rosyG in reply to Mariemcdo]

yes- I think the improved circulation helps

[Gambit62 Administrator]

If you had B12 shots then your levels went from 104 to astronomic (post shots) and have now fallen to 500 (ng/L? pmol/L?). Post loading shots 500 of whatever measurement can actually be quite low. Normal range does not apply after loading shots and you need to go by symptoms and if you are feeling fatigue that would tend to imply that you are currently undermedicated and need shots more frequently than once every 3 months.

[Mariemcdo in reply to Gambit62]

Thank you for your message, I have just ordered B12 ampoules directly from Germany and will start managing my own injections as from next week...... The NHS will only fund 3 monthly and I am literally on my knees incapable of even walking upstairs !

[Gambit62 Administrator in reply to Mariemcdo]

you have neurological symptoms - which means a more aggressive treatment per NICE and BCSH guidelines - but that may only get you shots every 2 months which sounds as if it is a long way from being enough for you.

[ACritical in reply to Mariemcdo]

Don’t forget to supplement with at least 1 – Folic Acid 400ug regularly.

[Marz]

It is common for B12 Deficiency to go hand in hand with Low Thyroid. It is also a cause for the chronic fatigue - something I suffered with before being diagnosed with Hashimotos back in 2005. It has been a steep learning curve since I also have a B12 issue along with Crohns ! I would go for an after lunch nap and wake up in time for supper ! The joys of being retired ! I am now well with optimal thyroid treatment - B12 injections and a tray full of supplements !

Exercise will use up valuable T3 - which I am suspecting will already be low.

Happy to help ....

[Auntyp62]

I suffered from chronic fatigue and was diagnosed as having a sleep disorder. I was having b12 injections 8 weekly and was told that my hypersomnia was normal for me..........felt totally let down by GPs so did loads or research and private testing and found out I had high homocysteine which is a toxic by product related to b12 and b9 not working together (too complicated to explain here). My test showed that although I had goo b12 levels my b9 or folate levels had dropped massively while on b12 injections..after 5 days on folate and b12 orally I woke up and have been fine for past few months......I do not have pa just very low natural levels of b12 but I do have a thyroid issue as well.

[MariLiz]

Have they checked your thyroid function too? Lots of these things can occur together.

[Oanciufri]

For fatigue I have tried alpha lipoic acid 200 mg + acetyl l carnitine 500 mg with excellent results. I can say that my energy levels are 85% back 🙂

You can vary the dosage up to 600 mg of ALA and 2000 mg ALCAR, but I would start with a small dose and see how you feel.

Look it up online!