On top of everything else I am dealing with, I was devastated to learn today that I have osteopenia – following a bone density scan.
This is the result of NHS failure to diagnose coeliac, which I then had diagnosed privately in 2011; the NHS is only just taking note of it in 2013.
Despite ceasing gluten im Sep 2012, I still have white flecks on my nails and feel like shit.
I have adrenal fatigue/insufficiency, Hashimoto’s, pernicious anaemia, coeliac, chronic neutropaenia, recurring iron deficiency, hypoglycaemia and IBS.
I manage my Hashimoto’s myself as the NHS proved unfit for purpose. I use NDT and now have suppressed tsh – I was kept at high tsh by the nhs for about 5 years.
I am seeing an NHS endo who is trying to get me NDT on the NHS as NHS GP refuses to prescribe. However he wrote and said I should now drop my ndt dose to get a detectable tsh due to the osteopenia. Of course I will do no such thing as I need to be well enough to work, I don’t feel well as it is and know I will feel worse with raised tsh.
Fortunately I have control of my ndt supply and dose.
But what can I do to support my nutritional intake? I have been taking supplements for decades but it clearly made no difference due to malabsorption. Since Sep 12 I have been taking a high strength liquid gluten-free calc,zinc, mag, D combo.
I have pancreatic insufficiency which clearly needs to be addressed as it contributes to malabsorption. NHS GP refuses to prescribe creon. I was taking nutrigest but still had undigested food in stools. Gastro told me it’s not nearly strong enough. He prescribed creon which I just started but obviously when I run out I’m screwed unless anyone can tell me where to source it without script?
I don’t know what to eat anymore as the canned kidney, butter and other beans I used to eat all have traces of gluten. I do not eat meat (any meat whatsoever ie I do not eat flesh - or eggs). So what can I eat to support myself that is gluten free and vegetarian?
I sourced calcium for IV use but have no one to administer it unfortunately.
Any and all advice gratefully received.