I have lost my voice and am suffering from very high levels of fatigue. Walking up the stairs is hard work and leaves me out of breath. I have been suffering with this for 7 weeks now and have been unable to work in this time. My GP has tried antibiotics and steriods but neither has made any significnat difference. I am currently waiting for a consultant appointment but will have to wait another month before I get to see anyone.
I have previously had this twice before 5 and 10 years ago, each of the previous times my voice was absent for around 3 months as well as a few bouts that were less prolonged. My other symptoms include some mild cold like symptoms: headache, sneezing, runny nose, itchy eyes (at times very itchy eased with eye drops). After the previous outbreak in 2010 I have suffered from chronic fatigue to a greater or lesser extent constantly although have been able to work part time and have some quality of life.
In 2010 I was referred to an ENT consultant. Who performed an laryngoscopy and diagnosed that the problem was with my asthma inhaler. He advised that I used a spacer with my inhaler and drink water after taking my inhaler and that things would be ok. I followed these instructions religiously since and yet the problem with my voice has returned.
I also had some raised liver function tests in 2010 so eventually my doctor referred me to a gastro consultant to try to get to the bottom of the problem. With the assitance of a number of other consultants: They managed to diagnose a number of conditions including Fatty Liver Disease, genetic haemochromatosis (diagnosed with liver biopsy and blood test) and alpha-1 anti trypsin deficiency. I was diagnosed with iron overload as a result of the haemochromatosis which I have recieved treatment for and my ferratin levels dropped from 999 to less than 50 as a result. Subsequently I have been diagnosed with a testosterrone deficiency and am on a gel to treat it. The consultant thought this was most likely due to damage caused by the iron overload.
The treatment I have been having for the haemochromatosis / iron overlaod is therapeutic venesection. This treatment leaves me feeling excessively tired and typically I require 24 hours bed rest after each treatment. I understand that this is an extreme reaction even for haemochromatosis patients.
I have had lung function tests as result of the alpha-1 and the consultant decided that becasue of my low risk factors (lifestyle and genetics) I didnt need any further monitoring or treatment.
I have also have had the following tests:
echo cardiogram, everything normal.
ultra sound of my liver, no cirosis
fibroscan of my liver. no cirosis nice and bouncy liver!
MRI of my pituitary gland no scaring.
and none of these have shed any light on what is wrong with me.
So does anyone have any ideas of what might be going on here?
Thanks in advance for any help you can give!