So I had a serious anaphylaxis 18 years ago after taking echinacea, devils claw and another herbal med prescribed by the herbalist I was seeing to address high stress job and impact on me. I slept upright for a year as lying down my chest filled up with fluid.body covered head to knee in large very itchy swellings. nothing helped. large steroid dose for 12 months continuously. Liver compromised.
From that I lost the sight in my left eye one morning, 6 months later waking up in serious eye pain and loss of vision in left eye and was diagnosed with Uveitis at hospital same day.17.5 years later and in January 2015 I was diagnosed with Hypothyroid. Prior to Jan 15 I had been seeing hospital very regularly for uveitis treatment: i have had double cataracts removed, have regular implants of ozurdex in both eyes and in June 2014 i entered a drugs trial for my left eye- worldwide study of Illuvien , intended to last 2-3 years rather than the 3 months the ozurdex lasts (supposed to last 6-9 months).
4 years ago I started on a regime of chemotherapy and steroids every day for 4 years -immunotherapy to try to turn off immune system then turn back on and hope that Immune system corrects itself where eyes were concerned. It didn't work so onto the drugs trial as the next step. That hasn't worked either and since June 2014 I have had 4 ozurdex implants in the trial eye as well as the non trial eye (latest last Friday)
The chemo and steroid were dreadful- my body does not tolerate steroids well- i get roid rage, cant sleep and want to eat everything or smash its face in!
I developed skin lesions 15 years ago on left leg which never healed until last year with a radical treatment. I have multiple allergies. I have developed really bad gut problems and asthma. Gut investigated thoroughly by a fabulous Prof Brown at the Winfield hospital (private but NHS referred) he said I had crohns like symptoms and he found numerous polyps when he did an colonoscopy (lovely procedure). Asthma worsening and have needed emergency nebulising 4 times in 2 years.
I have piled on 4 stone in 4 years.
2 years ago I started to feel very tired and began having severe leg swellings to the point that I could not walk far at all and even sitting down caused serious pain in my knees so had to stretch legs right out when sitting. I have always liked the cold rather than heat but now I sweat buckets all year round and just cannot tolerate heat at all. I feel very faint very often and have had constant tinnitus in left ear for those 2 years. At work I have 3 fans concentrated on me at all times at my desk- when I go to other peoples space- I really suffer and pour sweat-embarrassing.
I know that most medics I have seen have written off my swollen legs and feet as being due to the fact that I am just PLAIN FAT!! Hot weather does make it worse.
I pee constantly. I Have chronic diarrhoea way too often and fall asleep at the drop of a hat now. Its embarrassing.
My face and eye are swollen all the time and my hands swell up too. My skin is bone dry no matter what I use and my memory has gone. I actually started to think that I might have alzeimers last year- as did my family I later found out.
I went to a different GP at my practice and regaled him with a list a hypochondriac would be hard pressed to conjure up and by then my knees were so swollen I could not get up and down from chairs and could not get on the floor to play with my grandson any more. I was on 2 sticks by this time but only at home as I could not bear to use them in public.
Night terrors/nightmares like you wouldn't believe and now what I think are panic attacks...such an overwhelming sense of impending doom. Scaring me to death as I cannot rationalise this at all.
Memory loss/panic/anxiety/making mistakes at work and all the while feeling dead tired every day no matter how much sleep I had ( although in truth sleeping has not come easy for several years). GP put me on Zopiclone sleeping pills- which NICE suddenly gave a warning about last August (side effects in line with some of the things I was having) so I weaned myself of those. But Zopiclone did not explain everything so in desperation I saw this other GP who looked at my knees and my hands and said I reckon you have thyroid problem . Put me on 50 mg Levothyroxine there and then, took bloods and I went back 2 weeks later for results. He said I was Hypothyroid. I said since taking Levo my knees were reducing and my head was clearing slightly - remarkable !
I have no idea what results said but will ask that I have some printouts in future. Although have not had levels checked since January and it looks like more regular checks are needed from what people post here.
I recently had a chest x ray as I failed an asthma check and was told that my heart is now enlarged- it was fine in 2011 with last x ray.
Had knees x rayed too - both show arthritis (i am 54 and either peri menopausal or menopausal, GP not sure which).
I am HLA B27 positive tissue type as was my father who died of Wegeners Granulamatosis aged 55.
I suffer from migraines and have been losing teeth like theres no tomorrow. I get chest pains- so bad at times I think I am having a heart attack.
I try to be proactive in my own care as much as possible but feeling that the Hypo issue is in need of more from me.
I arm myself with knowledge around uveitis and associated conditions - all auto immune it seems.
TBH i need to continue working as long as possible or will lose everything including my home. I am having a serious issue with my employer- from worst period of ill health last summer and almost lost my job because of this. I was so stressed out over such a long period of time that I believe that trigger the Thyroid issue but will probably need to try to prove that as far as work issue goes.
In all honesty I feel like they should chuck me away and start again. My body is totally rubbish.
Just a silly thought I keep having- my left side seems more affected than my right side. Sounds daft but I am certain that left half of everything is worse.
so after all that misery - any thoughts on what I should be asking about/asking for with GP? or someone else?
writing it down for the first time- it looks hopeless and just too far fetched I suppose. But its all true and its my story so far.
well done to anyone who ploughed through this - its a big ask I know.
I just want to know what is happening to me, why and what I/they can do to help me out a bit for some quality of life. I try to stay positive even if I feel less than and sometimes the smile is fake to stop people asking about it or assuming that its just me being pathetic again. Peoples compassion doesn't last.
I should also mention that my flesh is painful to touch- especially my legs from the knee down. Even the light touch of my little grandson is unbearable....what's that about? It came along with the other stuff about 2 years ago so I assume connected with Hypo but may be wrong. anyone else get that?
I have also developed problems swallowing/choking- thats a bit scary. And a constant loose cough.
CHUCK HER IN THE SKIP!