I am new on here and I wonder if anyone else has struggled with Endocrinologists like I have. My story is a long one, so apologies now!
I had an underactive thyroid, it runs in my family but at a very low level and Endos refused to treat it. I managed until I reached my 40s when I became increasingly unwell with hypothyroidal and memory problems. Despite visits to several endos, no-one could decide what was wrong with me as my TSH was falling and I was heading towards myxoedema, treatment with Levothyroxine made me worse and I begame so ill I could hardly walk and slept all day and night. Finally I had had enough and after reading lots of patient forums, I decided to treat myself with Liothyronine (T3) much to the Endos disgust. This worked well and I started to improve. Around the same time my memory problems had become really bad and I was diagnosed with Dementia (probably Alzheimers) which did not come as a shock even though I was only 50!
Over the next 5 years my brain function improved with my Thyroid treatment and my specialist changed his diagnosis to Metabolic dementia. His recommendation was to keep my endocrine systems as stable as possible to keep the dementia from claiming me. Suddenly I started with Epilepsy, the full gran mal fits which are quite violent and I kept injuring myself. After the first fit I was taken to hospital, where I was seen by Neuros in an attempt to find the cause of these fits. The senior consultant spent some time with me, asking if I had injured my head in the past and I did remember a significant injury. Some 20 odd years ago I had caught chickenpox off my daughter and had ended up with a head injury after blacking out, falling backwards and splitting the back of my head open on a metal strip. I then spent several days in hospital with 8 stitches in my head and bad concussion. I was ill for days afterwards, semi concious and delirious until the chickenpox rash emerged. The Neurologist suspected that I had at some stage had a skull fracture then and there was some damage in my brain. I went on to have a fair number of seizures before medication managed to stop them, bashing my head on any number of hard objects during the fits and ending up with persistant headaches and black eyes.
Recently I became ill again and for well over 18 months have been fighting Endos to recognise that my cortisol production is failing. Despite the fact that I could not get out of bed, nausea so strong all day and breathing problems, I was told "I was not ill enough" for treatment. Having spent some time reading about head injuries, I now know that my past head injury has likely caused damage to my pituitary as I have now lost my thyroid function, my cortisol function, my sex hormones are virtually non exsitant and my memory problems and processing problems are growing by the day. I have explained this to the Endos but they are not interested here. I finally have had to fight for a referral to a pituitary specialist out of area as I'm getting nowhere. I have spoken to this specialist in Leicester and he is treating my adrenal Insufficiency and will be looking into pituitary failure as a cause.
When I spoke to my local Endos recently, confirming my adrenal insufficiency and subsequent treatment, he seemed very surprised. He said he had never heard of head injuries causing brain problems, despite knowing about the problems that footballers have from heading heavy balls in the past. I really despair about Endos!!
Has anyone else come across similar problems with pituitary failure after a head injury?
Heather
Post Concussion Syndrome?
Any ideas on improving attention
Feeling alone with just my thoughts
Reasonable adjustments
