Hi,
I am a 37 year old female who has been seeing my GP since October with a number of symptoms that she could not identify the cause. Initially it was night sweats, agitation, dry skin, eyebrows thinning and face flushing/itching and burning. By February, these symptoms changed and I started to become breathless on exertion, heart felt like it was racing particularly when I ate sugar, I couldn't get warm, sleeping more than usual and tiring a lot quicker than normal (I have MS so I am going off what and how I normally experience and describing things that are different to my norm) throbbing kidneys like I had an infection or had been heavily drinking (I had neither).
I have had thyroid tests (basic thyroid function they wouldn't do the T3/4 test as the thyroid function was normal), fasting blood sugar test, immunology tests and the list goes on! All came back normal. However my ferritin was elevated at 136ug/l (lab reported 6-86 being the normal range) and my percentage iron saturation was 54% (the lab did not give the normal range for this but reported it as normal and no action required although I know this is not correct). The GP said these results where not indicative of anything and repeated them. They came back the same and on both reports it said that HFE screening was recommended. I have had the test done and it has reported that I am a C282y carrier and that if my transferrin was above 50% to refer me to a haematologist. The GP refused this yesterday as they said that I can not have haemochromatosis as I am only a carrier and I have no results that demonstrate that I have iron overload at any level as my haemoglobin is normal? When I questioned about the ferritin and the transferrin levels being elevated and the fact that the lab report stated that I need to be referred if above 50% (transferrin) they told me that they know their job and that none of my symptoms are indicative of heamochromatosis and repeated that I am simply a carrier and I have probably had a bug?!
I don't know what to do as I do not feel at all well and with having MS and dealing with my usually daily problems along with these new symptoms, I am struggling to cope physically.
Can you please tell me what I need to do now because I don't feel like I have any strength to fight with doctors in order to get help.
Thanks,
Lyndsey