Misdiagnosed 30 years

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Hi to all,

In 1987 I was diagnosed with ME (also known as chronic fatigue). In 1992 I saw a consultant who said to me that he thought I had primary hyperparathyroidism (PHPT) because my calcium level was very high. He re-checked the calcium and it had returned to normal so he didn't bother to check parathyroid hormone levels.

In May 2016 another consultant saw high calcium and said he was very worried and that was when I finally got the parathyroid diagnosis. Since then it has been slow apppintments but I have now finally had all the tests (including sestamibi scan) and

Seeing a surgeon for the first time on April 5th.

Has anyone else had this experience? Can anyone else tell me how the tiredness of hyperparathyroidism feels and whether it is similar to ME? The reason I ask is because a different consultant told me last month that I wouldn't feel any better after the operation because my calcium isn't high enough to be causing all my symptoms. Although he is really a diabetes expert he said I only had 'mild' PHPT and yet I've read everywhere that it isn't the high calcium alone that causes symptoms but the length of time the calcium has been raised - and mine has been raised for 30+years.

Finally - has anyone else had the op at the QUEEN Elizabeth hospital, Birminghm, with Mr Alam Hannan - how long did you wait for the operation? Were there lots of cancellations?

Thank you in advance for any help/advice.

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  • Posted

    Hi Eleanor8264

    ?I don't know how helpful if at all. my response is going to be, but I'll try.  In 2000 I was, by chance, diagnosed with primary hyperparathyroidism and was told that if I didn't have surgery ASAP, I would be in a wheelchair within 5 years as I was losing calcium.I was treated by a breast surgeon at St Mary's Hospital in London, and, after 6 cancelled admissions and 9 months after being told my case was urgent, I underwent surgery. I was in theatre for almost 5 hours and was later told I had an overgrowth of parathyroids amounting to 16, yes 16 being removed! My recovery was uneventful and I went home after 3 days. I do not recall having any symptoms prior to the discovery of this condition and did not notice any change in my health subsequently.  However, again by chance I was found to have hypothyroidism in 2003 and that has really altered my life.  Weight gain, hair loss, low mood and lethargy has been my lot ever since. I have been treated just by various GP's and I am disappointed in the casual way thyroid problems are dealt with, and I am not alone in recognising this either. May I suggest, if you don't belong already, join a group for support, Hypopara/British Thyroid Foundation both are excellent and give valuable advice too.  I somehow doubt if this has answered your questions, but all I can say is that I do empathise with you and wish you well.


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    • Posted

      Thank you for your reply. What a nightmare hyperparathyroidism/hypoparatthyroidism are and so little support for people who don't bounce back and make a full and quick recovery. After 30 years of ME I well understand the misery of ignorant doctors, unhelpful comments and battles for support and recognition. I know many people with unfashionable illnesses and they all confront the same medical ignorance, useless advice and absolutely no support - so it isn't only hypo-parathyroidism that meets with this kind of response.

      I think it is time that support groups united - because whether it is ME, MS, parathyroid problems or HG (pregnancy vomiting so severe that women have abortions) etc etc etc we are all fighting the same battle against ignorance and lack of treatment. We would all do better if we provided a united front and even though I am bedridden most of every day I do engage in fighting my corner.

      I hope that the future brings us all better health - i don't need to be cured, just feeling better than I do now would be a huge breakthrough. I send you all good wishes and thank you for being first to respond to my distress - I appreciated that very much.

      Kind regards Eleanor

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  • Posted

    Hi Eleanor.  My wife's hyperparathyroidism is still present despite having had three glands removed by probably the best parathyroid surgeon in the UK - Fausto Palazzo.  But my wife is very much the exception rather than the rule.   Most have only one gland that needs removing.  Once removed the change for a sufferer is remarkable.  My advice is that you should join Sallie Powell's Facebook group (hyperparathyroidUK Action4Change) whose joint knowledge about this disease is better than almost any doctor in the UK.  You will find amazing support there and members will follow, help and comment on your progress right through and post your operation.  Best wishes.  Alan.

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    • Posted

      Hello Alan, thank you so much for the contact details. Its so dispiriting when you find yourself talking to doctors who know little and are hoping you won't notice, and so I look forward to contact with Sallie Powell very much.

      I hope your wife is coping with what must be an awful strain and hope she has a good quality of life. I recognise that you, like my husband, will also be feeling under pressure and wish you well. I hope things improve in the future for you botho.

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    • Posted

      Thanks for your kind thoughts Eleanor.  My wife is still not well and the doctors don't know what's wrong although hyperparathyroidism is suspected.  More tests are being done. Good luck with Sallie Powells website.  Alan.

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