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Good morning, I hope everyone is not feeling too wretched today. There are many sad stories here and as you know this vile disease can strike at anyone from aged 13 to very elderly and left mainly because of the ignorance of GP's and even some endocrinologists, who like the term "you have mild hyperparathyroidism" when actually there is no such thing, you either have it or you don't.
A young woman had an article written in a national newspaper of the 7 years of hell she went through, only because she noticed that her blood calcium level was elevated. This is how I found out too, so sadly we have to do our own investigating and get copies of blood tests from GP's otherwise, like mine, whatever the result "no further action".
Sallie has created a closed Facebook group where many sufferers have joined and expressed how they feel and there are some happy endings where they have been operated on. Her aim is to make the NHS aware of what i happening and has also created a petition because of the untold suffering of some people who feel totally abandoned and helpless. She has devised a schedule with names of surgeons and findings. This is most important as you can end up with a surgeon as one did, who removed lymph glands by mistake!!!
I urge you to join the group "Hyperparathyroid UK Action for Change" you can say exactly how you feel ask questions, post links in fact do anything to help yourself and perhaps others.
At the moment, like Phil who did this earlier on here, we are also creating a symptoms list and again urge people to add anything they feel is as a result of pre op HPT. We are also connected with the U.S. group who has direct access to the well known Norman parathryoidectomy clinic in Tampa, who are happy to answer questions.
This is the start of our list:
weight loss as a consequence
rapid heartbeat more or less constant
feeling hot and uncomfortable when it's not hot
a feeling like a tight corset around the bottom ribs which seems to get worse at night and if I can eat something usually have to stand up eating
unable to sleep for more than a couple of hours and only with a pill
usual wake up 3.00 or 5.00 and then just stay awake getting more and more churned up
desperately fatigued but feeling wired up
bone pain in knee joint and back, hands anywhere in fact
mild panic attacks
a feeling of total hopelessness and doom
no interest in anything
irritable and impatient
difficulty in tolerating noise even the radio playing softly
stomach burning up with acidity
burping even with still water
no appetite at all
odd fads, going from healthy to unhealthy diet
having to force oneself to try and eat something
the thought of food and smells giving the shudders
becoming almost phobic about eating particularly in the evening
unable to face anything healthy, no fresh fruit or veg
Trembling as if excited but definitely not!
Loss of Hair
Loss of Emotions
Dry flaky aged skin
Irritable bowel syndrome
Seizures possibly Calcium deposits in brain giving epilectic symptoms
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