Hi, I'm new to the group from Australia,
After several months of worsening symptoms (nausea, pins and needles in fingertips, burning sensations neuropathy in arms / legs, twitching leg muscles, brain fog, exercise intolerance and high heart rate/palpitations, fatigue), many doctors appointments, blood tests, scopes (clear), MRI's/CT's (clear), i was finally flagged as having below normal B12 levels of 204 pmol/L (ref >260 pmol/L) and active B12 46 (ref >50 pmol/L). Previous B12 tests from 2020 and 2021 showed a level both in the 220's but the different lab had a different ref range of >180 pmol so was deemed within normal range, so it appears i may have been low for a long time.. Folate test normal 19.6 nmol/L (ref 6.0 - 45.0).
Recent IF antibody test was negative - I have a parasite we are trying to treat and i tested positive to the Celiac gene so my doctor thinks this may be the cause of my poor B12 absorption. Currently trialing gluten free diet despite celiac blood test showing as normal.
I have just finished week 3 of my 1000mg every second day loading doses of IM hydroxocobalamin and despite initially showing some improvement in symptoms and energy, week 3 has been horrible with the return of most of my symptoms - nausea, pins and needles, burning neuropathy in arms / legs, fasculations, high HR etc.
Anyone else experienced something similar and do you think my diagnosis is correct given my results, symptoms and poor treatment response?
Just after some reassurance I'm on the right path and i just need to be patient with the B12 shots.. I've read it can take a while to come good.
I have a Neuro appointment coming up at some stage also.
Cheers