Hi Feels a bit odd posting this as I’m now an admin here but here goes anyway! Sorry it’s horribly long…
A bunch of background… Was diagnosed with PA a year go with B12 <125ng/L (range 180-2000ng/L) with positive anti-intrinsic factor antibody result. My symptoms were extreme tiredness, breathlessness, brain fog, GI issues. I got tested after a family member was told she had PA. I also had low lymphocytes 1.43x10^9 (1.5-4x10^9) and low TSH 0.12 (0.2-4.5mU/L) with my free T4 16 (9-21pmol/L) at the time. MCV was 82 with no signs of anaemia. Liver, kidney, glucose, tTG IgA and others normal.
TSH: back within range @ 0.31 in April and was 0.37 in September (free T4 16 and 15 respectively – nothing else thyroid has been tested.)
Lymphocytes: have been fluctuating around the low end / slightly deficient (lows correlate with having a cold so not overly surprising.) Since I started getting B12 injections one of the most noticeable positive changes was a massive decrease in the numbers and severity of colds. Other WBCs are well in range except basophils which are bottom of the range. Currently slightly low – I’ve had a minor cold I can’t shake since christmas.
Ferritin: diagnosed with low ferritin as a result of becoming breathless again in late August @ 13ug/L (15-200ug/L) and put on 210mg twice a day of ferrous fumerate. GP1 wanted my levels up to over 40. Ferritin increased to 22 by late Sept. GP2 (who saw me for something else) was happy with this so did not want my ferritin retested at the end of my 3 month course so I tested it privately in early December (Ferritin 42.32ug/L (13-150), Iron 20.73umol (6.6-26), TIBC 76.03umol/L (41-77), Transferrin saturation 27.27% (20-55)). GP2 had my ferritin retested last week, 2 months after finishing the tablets and it had fallen back to 24. No further action on this according to letter from GP2 on Friday.
Other bloods: MCV has been low in range throughout (lowest was 79 highest 83) with my latest last week of 81 (range 78-98fL). Haemoglobin and haematocrit mid range every time measured.
Folate: has been a bit rubbish but this has not been tested again since I found this website and started learning more about PA in mid Aug 16! Was 4.3ug/L (2.8-20) then. I’ve been taking multivitamins (with 200ug) and an additional separate 200ug tablet, both when I remember to which is maybe 5/7 days.
B12: I seem to be one of the folks who measure low B12 after injections – 373ng/L @8 weeks post 6 loading doses and 413 @8wks post injection later in the year. The highest I’ve measured is 822 @2weeks post injection. Several GPs were confused by this and I’m now on 2 monthly injections as a result. Feel really crappy by 6weeks post injection though with increasing brain fog and increased sleep / tiredness though its hard to separate low B12 and low ferritin symptoms.
Not had Vit D tested (GP2 + nurse said no) but am vegetarian and obese (and live in Scotland ) so apparently those increase my risk of being deficient.
Anyone still awake?? Well done if you got this far!
I feel like rubbish again with brain fog, mixing up words, exhausted and breathless even though I only had my B12 injection last week - it’s been pretty bad for weeks.
I’m off to see GP1 (who wanted my ferritin @ least 40 and diagnosed me with PA originally) on Monday in the hope that he will:
- prescribe more ferrous fumerate as it appears I can’t keep my levels up otherwise
- test my Vit D – not asked him yet. Worth a try!
- possibly recheck folate levels
- ask if can change to 6 weeks for B12
Anyone have any suggestions what else I should ask him? I just want to feel well and not crappy all the time.
I’d rather my GP was keeping an eye on VitD and ferritin etc but I will treat myself if I have no choice.
Thank-you for reading!