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Hi All I am Looking for some information and advice, I am worried about My husband, He recently had a Mini Stroke and was diagnosed with Atrail Fibrillation . My Concerns Are that his Mother had Her Pituiritary Gland removed  Some time in the 1950's . My Husband only knows That her organs was enlarged, She was a big Lady and My husband does have some of her features eg Large Hands. I never took much Notice but alarm bells have been ringing his echocardiogram suggested his heart is enlarged he also has a tongue to big for his mouth indentations in his Tongue suggest so , and his teeth are spacing. He always had prominent features on his face which I always found extremely Handsome, But when he wears his Glasses they indent into his skin at the side of his eyes and mark him suggesting weight added here. He has recently been for a biopsy for removal of a mole and the nurse said Is Skin is very Thick, All of these seem to be markers for Agromegaly. I dont want to overwhelm myself unduly, But the medical proffesiion at the moment are treating him for A dicky heart and havnt asked for any other information except did any one else in the family suffer with there heart of which none have that he was aware of , Do you all think this should be mentioned at the next discussion with the Doctors as I dont want him mis diagnosed and treatments mixed up . All advice and information greatly received Michelle x

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  • Posted

    Can I just add that he had Headaches and Blurred Vision as to why he went to the Hospital his left eye would not move to the left , Hospital has put it down to mini stroke . They then found atrail fibrillation with echocardiogram finding heart enlarged x

     

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  • Posted

    Not many doctors are familiar with Acromegaly so you may have to do some educating and it would be best if you can find an endocrinologist  who specializes in pituitary disorders.  If he has a tumor it will show up on an MRI.  Acromegaly can also be diagnosed if he has an elevated IGF-1 level.  I can't stress enough about finding a dr. who knows acromegaly.  Stay strong. Acromegaly is one of two pituitary disorders that causes headaches.  It also causes the other symptoms you were mentioning.  
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    • Posted

      Thank you for getting back to me So Quickly, We have to rely on the NHS and hopefully someone will listen, I have spoke to my Husband and he is going to mention all this to the doctor next Week, and hope its sorted very soon x
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    • Posted

      please look on the pituitary foundation website

      https://www.pituitary.org.uk/

      they have information which is targeted at GPs as well as at patients family and carers.

      it is such a rare condition that indeed as DSV said above not all doctors may have seen it. but please don't be too quick to criticise the NHS :  private doctors are equally likely not to have seen the condition. you will certainly not be confusing his treatment at all by mentioning this to his current mendical team and you may even be helping. especially if you print out and show them some of the material to support your concerns they should be able to organise a blood test very easily. 

      good luck

       

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    • Posted

      Hi There Thank you for getting back to me, first of all I wasnt any way criticising the Nhs , I was merley stating that we dont have private doctors and cannot go and ask for such specialist of Doctors. The NHS has been extremely good with my husband and felt that this was information they needed to know I think we need to mention symtoms and hopefully send him for a blood test to confirm or not, I will take your advice and print of some information to take with us at the next appointment
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  • Posted

    Thank you x

     

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