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Hypocalcaemia I had a total thyroidectamy in July 2004 and since then ...

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I had a total thyroidectamy in July 2004 and since then I have struggled to maintain good calcium levels. I feel that most GP's do not appear to have the experience to manage this type of problem which results in the patient stressing about their condition. I have found that the support that is helpful if gained from the metabolism clinics run through local hospitals and I have found that resorting to getting the experts to lay it on the line for the GP's the only way forward.

[i:72b5b2257a]This message was automatically imported from the original Patient Experience[/i:72b5b2257a]

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  • Guest
    Guest

    Posted

    I have had extremely unstable hypocalaemia since a thyroidectomy in 1992 and worsening after a Hysterectomy in 2002. I have battled with doctors to have this recognised as they do not expect calcium levels to drop so precipitously but I have been accused of 'bringing it on myself' because the only widely known fact about low calcium is that it can be caused by hyperventilation. I am now unable to teach due to the unpredictable nature of this condition and have set up a website for HPTH support in the UK. http://www.hypoparathyroidism.org.uk

    We now have over 100 members many of whom suffer identical symptoms caused, we believe, by the rate at which the calcium falls rather than the actual level. It is possible to experience symptoms while in the 'normal ' range and everyone has their own personal range within which they feel comfortable.

    I would like to see awareness of HPTH raised in the medical world and a standard of care put in place for patients.This is a frightening and disabling condition which patients have to learn to manage on their own.

    [i:c532ee2921]This message was automatically imported from the original Patient Experience[/i:c532ee2921]

  • Guest
    Guest

    Posted

    i had a total thyroidectomy for thyroid cancer in 2002. since then i have had plenty of info about that but this is the first site i have come across that actually matches the symptoms i get. Iwent to the gp with low calcium symptoms and was asked how i knew what they were and i could not possibly be low if i was taking the pills correctly.

    [i:477d2541ae]This message was automatically imported from the original Patient Experience[/i:477d2541ae]

  • Guest
    Guest

    Posted

    my son has hypoparathyriodism his symtoms nausea tiredness seizures

    muscle pain due to low calcium levels

    the standared of care is quite substandared due to the lack of knowledge with in the medical community

    you have to work blind with this condition as there is no machine to test your calcium level if you start to display symtoms the only way of getting a blood test is to go to ae or your doctors and then wait for the results which can take up to a week to recieve for example a diabetic displays symtoms they can self test and ajust there medication to the result a person with hypoparathyrodism has to gess which is quite frightening

    a diabetic has unstable glucose levels which is acceptable in the medical proffesion even though there medication is replacing the hormone that they have stopped producing

    my son medication is man made and the hormone his body is missing is not replaced diet stress weather sickness etc all influence his calcium levels

    there is little knowledge within the medical proffesion on hypoparathyroidism so the care is hit and miss

    self teaching about your condition empowers you to a certain extent

    but it needs to be followed by the medical proffesion

    simple guidlines need to be in place for example my son had a seizure and was admitted into hospital due to low calcium level no active treatment was given they wanted to discharge him i explained as my son had had a seizure this is the critical stage of his condition that he has not got enough calcium in his blood stream

    he needs monitoring and iv calcium which i felt was commen sence

    the medical persons were quite dismissive so i took action into my own hands and went to the chief execuitive office and explained my concerns regarding my sons care within 3 hours my son was transferred to the correct ward and was given the approperiate care

    this is not a issolated incident regarding the management of my sons condition all that is asked that the apprioprate care is given

    [i:fa7ae91179]This message was automatically imported from the original Patient Experience[/i:fa7ae91179]

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