Sorry, this is going to be a long one!
Starting with med history:
coeliac following a strict GF diet for the last 14 years,
lactose intolerant for last 12 years (I can have very small amounts of cheese),
2011 diagnosed with VitD deficiency - took Adcal for 2 years and now back in reference range so don't have that any longer,
2012 further endoscopy because of fatigue, and possible refractive coeliac - given all clear on small bowel health, put on Low FODMAP diet to relieve IBS symptoms (seemed unable to process carbohydrates). Part of this diet limits most sources of folates, broke the diet on B12d/ folate deficiency dx.
Later 2012 diagnosed with Reactive Hypoglycemia (pre-diabetic), went on a 6 small meals high protein low carb diet, lost 3 stone, started doing triathlons and lost the blood sugar spiking, so no longer RH or pre-diabetic, but I have to keep it in check still.
2014 3 months off work with depression and fatigue.
2014 Diagnosed with B12D and given loading dose 1mg, 6 times over 2 weeks, then 8 weekly jab, adjusted to 4 weekly in Jan 2015, adjusted to 2 weekly last week.
I HAVE BEEN SO TIRED FOR YEARS! Probably started in 2005, though it has got worse and brain fog is a reasonably new addition to the symptoms, maybe since 2012.
I'm having horrible recurrent episodes, such as;
Needing to sleep instantly - needing to stop on the spot, sit for 15 minutes to 3 hours and sleep or rest. I feel locked in when this happens, my body is too tired to move but my brain still functions fine.
Ridiculous fogs - watching the same programme 5 times in 2 days but still not knowing what has happened in it, recalling some of an event but missing chunks, knowing words, sentences, and knowing that I know them but they are just out of reach in my head, making really silly decisions that I wouldn't normally make (i.e., if I pedal backwards my bike will slow down, which I made whilst going 30mph down a hill!)
Cold, freezing to the bone. Only rest warms me up.
Yawning, sighing, particularly on exertion, such as walking downstairs to make a coffee, or walking to the bathroom - needing a big rest after one of these activities.
I take Fluoxitine 10mg daily for depression, which I have had for 2 months now. Took previously in 2014 too. I have 800% of RDI folate daily in tablet form, make sure I eat 1 banana and 1 orange and a handful of almonds daily (potassium, magnesium, more folate). I also take sublingual B12 (Solgar) 2500mg almost daily, more when I feel that I am slipping.
B12 originally made a massive difference. Felt like I had been a sponge before and that the holes were being filled in. HOWEVER, on the last 3 jabs I've had the horrible symptoms listed above for about 2 days before the jab and then felt ok for maybe an hour after the jab, then been back in bed for 3 days. I'm missing 5 days every fortnight and I really can't keep going like this much longer.
Should also say that as an amateur triathlete, I train for around 10 hours a week, as well as teaching full time. Every three weeks of training I find I just have to stop and do nothing. I think I'm quite sensible and don't push myself too far or beyond my capabilities of the moment. But what a contrast between 4 hour endurance events and being unable to walk to the bathroom without needing a nap!
Since I am coeliac I have yearly bloods. GP could see my B12 falling over the last 4 years (to 190 in October 2014), folate was low but just above ref range, VitD back on target, TSH bang in the middle of ref range, all liver functions fine, Ferritin is 275 (way over ref range of 150), Cortisol is very high, no probs with size/ count of RBC, WBC/ eosinophils sometimes higher than normal, which we put down to GF probs and other allergies.
My GP is excellent, someone who listens and is willing to explore other avenues that we can come up with. I want to go back to see him next week but would like to go armed with knowledge! Any ideas on where to go next with this would be greatly appreciated.
Thanks for your time reading this, sorry it's so long!