I started on hydroxocobalamin injections EOD at the end of May, plus cofactors. I have recently done a Medichecks test which showed my folate and Active B12 are now in good range - will post in comments. I wouldn’t say any of my symptoms are gone, some have improved very slightly. Dr Klein thinks I can go down to 2 injections a week, but I’m rather scared to reduce my frequency as I want my body to heal the nerves as best it can.
We think my problems started 20 years ago being misdiagnosed as fibromyalgia, so not going to heal quickly. And Ive only been EOD for 2 and a half months.
What are your thoughts?
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Chickens44
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2 and a half months is nowhere near long enough to repair 20yrs of damage. It is common sense your levels will have improved now on injections hence why guidelines state do not retest levels.
Your vitamin D looks quite low. I feel unwell at that level so you could try getting yours higher and see if it makes a difference. With it being that low in the summer you will likely become deficient soon into winter.
That's good. You may notice some improvement when you have reached an adequate level. I like NutriAdvanced D3 with K2 and although I find I'm still needing it in the summer, I like the fact it is in an oil and no fillers. Potentially a missing link with the b12?
You have relatively just only started treatment, so your bloods may have improved but not all your symptoms have gone. You need to inject to heal and this will take time.
I s.i. 3 to 4 times per day and over a year in and am still improving.
When your symptoms have gone or improve no more then is the time to consider reducing your injection routine.
when I started the injections I had them every other day for 2 weeks then it was reduced straight to one every 12 weeks. I still get symptoms with numbness and nerve issues however as my levels are within the normal range my dosage will remain the same for life
I get my own B12 supplies and self inject, as my GP surgery wouldn’t help as they say my levels are within range, but they had been borderline low, so had to resort to treating myself. GPs are no help at all when it comes to B12 deficiency unfortunately.
Thankyou, I noticed from your bio that you suffer stomach/gastro issues too. I have been experiencing this too and I’m undergoing tests to find the cause. Is this linked or separate issues please?
Not sure if it is linked. I was taking omeprazole for 20 years and I think my stomach was affected by reducing stomach acid, therefore I wasn’t absorbing nutrients like B12, which in turn has brought on other issues. So I suppose it is all connected. It’s about getting the body balanced with nutrients so it functions properly. It’s a minefield trying to get things repaired/healed and thereby optimising food and nutrients.
The doctors are not supposed to test your B12 levels once treatment is started for PA. It would be wise to find a maintenance dose so that you have no numbness or nerve issues. It means your nerves are being damaged. There also can be spinal cord damage you may not feel until it is too late. I get tingly toes after 3 weeks so I have my husband gives me an injection once per week so I can stay symptom-free. You might need to self-inject or find someone to help you inject to get enough B12. So many doctors do not treat this properly.
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