why cant no one tell me what my grandaughter has other than hypercalceamia.

[Fabnan]

This unfortunate young lady is 16 years old, has gone through school with learning disabilitys even if they denied this i knew. 12 months ago we were fortunate enough to receive a answer to this long and difficult illness although this is questioned by the likes of social workers who would rather slane myself than give a service to this young lady. The diagnoses came back as 1, vitamin d deficiency 2, hypercalceamia and the 3rd being learning difficulties with severe language problems. Why has no one heard of this and is it a diagnoses or another way of delaying help and support. Her mother as the same condition and so do 50% of those born ..I'M at my witts end and feel that im judged without knowing all the facts, can anyone give me advice or guidness were to go who to contact please. Her symptoms are severe fatigue and can sleep up to 5 day's, vacant looking, no empathy or though process but can manipulate at the drop of a hat to which now she continues to say that i done something bad to which is rubbish, it is learning or is it more serious.. She had calcium in her urine and her counts are still high, she had more than double the calcium in her bones , please can anyone give me some idea of what is going on..

[shaws Administrator]

I am sorry you have had such worrying problems about your grand-daughter.

She should have been referred to a consultant who deals with parathyroid issues as it appears 90% of cases result from hyperparathyroidism. This is an excerpt:-

Hypercalcemia as a laboratory value is defined as a serum total calcium level greater than 10.3 mg/dL (corrected for albumin)

Severe hypercalcemia (>14 mg/dL) or symptomatic moderate hypercalcemia (>12 mg/dL) requires urgent treatment and possible referral to a nephrologist

Urgent rehydration is essential while the specific cause of hypercalcemia is being investigated

This is the link:-

clinicalkey.com/topics/endo...

I don't know why she hasn't been referred but probably once you have a 'label' there sometimes appears to be an apathy in finding out the real reason behind the condition.

[honey53bee]

Reading about your granddaughter's experience brought back many frustrating memories of a similar experience I had three years ago. You may be at your wits end now, but don't give up. I've been there and lived to tell the tale. Your granddaughter's symptoms sound very familiar. From what you say, especially about the high levels of calcium in urine, the horrible fatigue, and low vitamin D, mood changes, etc., like the other respondent I agree it has all the hallmarks of hyperparathyroidism. It may not be this but it rings an awful lot of bells. Hyperparathyroidism mainly effects women, although men and children can be effected too. Research is still finding out why some people get it and some don't. The main culprit is enlargement of a parathyroid gland or glands which are on the back of the thyroid. We usually have four tiny glands and their job is to control calcium levels. I'm not an expert on learning disabilities, however I would say that if this is a parathyroid problem, once it's resolved, she will feel a lot better. The calcium levels alone should be a giant clue to a medic that something is wrong. At the very least, her elevated calcium levels should be investigated further, either by her GP or an endocrinologist, etc. I did find that because hyperparathyroidism is uncommon, the medics I met tended to describe it as the one about "moans, groans, stones and bones", namely about the way the disease makes the patient feel. I've only met two other women with it and their experiences were similar to mine. We all felt we could write a book - the patients' perspective - on the things that aren't mentioned about the disease in the medical textbooks.

When I was going through my illness and felt I would never be well again, I also used a brilliant website called Parathyroid.com, which is full of information. It kept me sane and it reassured me that I wasn't going crazy, even though I felt I was - because of high calcium. I had a battle getting a diagnosis but I persisted and wrote down all my symptoms in a letter to my GP and consultant which I asked to be put in my medical records. I knew something was wrong and was determined to be taken seriously, especially when I had to stop working because I felt so ill (like your granddaughter). I researched as much as I could about the disease and kept going back again and again to the GP. After a very long, rollercoaster of a journey, I was diagnosed, treated and finally vindicated. It was better than winning the lottery!!! Don't give up. It sounds as if your granddaughter's got lots of support. Good luck.