Off to St Thomas' in under two weeks accompanied by my daughter who has had a daily migraine for around a year and half! Some real progress made by seeing the right people. I have been busy blogging and fussing on another forum having found that I have hypothroid and poor adrenal function - worked out by my own detective work, as with all my conditions, plus of course the right tests. These two things new things - the hypothyroid/adrenal.. very long running as I had spectacular test results). which i have probably had for years, not picked up by anybody, (the story of my life), this included the sjgroens for years and the psoriatic arthropathy, have driven everything else mad and prevented me doing my physio, which has been in place to help with my conditions for years. Having spent a life time hardly being listened to for anything to do with mine or my families health - I have at least become self educated and skilled in getting places and working stuff out.
I thank the internet and the availability of medical and scientific papers, plus of course swapping on forums like this. for finally working it all out.
So... hypothyroidism and adrenal fuss will not get me more than anything else. I decided to right a blog every few days to keep my humour intact, it has made other people hysterical... so that is a start. I have always been good at long winded shaggy do stories... but of course these days having hughes fog and hypothyroid fog... I normally do actually forget the punch line.
Here is to more interesting research, my family is plagued by Hughes Syndrome and we all test negative!
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MaryF
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Are they treating you? My aunt has addison's disease..... have you been on prednisone over the years because 1.it could cause the adrenals to not produce enough, or none at all and 2.the prednisone may have been masking the symptoms of the adrenal issues....
I wonder which it was, or a bit of both? It can only take one time of taking prednisone to mess up the adrenals, but usually doesn't happen like that...
Hoping now you have some answers you start feeling better.
I often wonder if the reason I became a RN is because I already had all this knowledge trying to play super sleuth with my own medical issues...
Mary it is never a dull moment with you araound and you know we are here for you. Also if the medics do not listen will listen to each other.
Kristina the prednisone may of well masked the symptoms as some information shows that it can mask certain condition symptoms ill see if i dig the article out for you
AND my pea brain which is currently very mal functioning has JUST realized that I loaded this up in the wrong blogs place... oops sorry everybody ! Mary F... Technology is not my strongest point!
read with interest - my family too with APS, LUPUS ITP ETC and my daughter being referred to ST thanks to consultant at ST as the hospital here just wait and sit on things until things occur. I went up to ST a couple of weeks ago and thankfully was told being as daughter diagnosed (teenager) she should come and see them, so it has to go through GP. Nothing has been mentioned before about daughter being referred. Thankfully, there are doctors who are dedicated to this medical condition.
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I lost both my legs to Hughes Syndrome.
a letter from the haemostasis today.
Working with Hughes and Lupus
Fluctuations...
