My Mum

[Moggie]

Can I ask a quick question regarding Paget's and Vitd as I am taking my mum to the doctors on Thursday to request some bloods and want to know if, as well as vitd, B12, calcium and iron, I should be asking for anything else. Also can taking vitd make paget's worse as I know the more vitd in your body the more calcium your body makes.

My mum has Paget's in the head which led to tinnitus and now total deafness. She is 84 so will not got anywhere concerning her Paget's (although her GP agrees that she definitely does have Paget's as do 3 out of her remaining 4 siblings). She "doesn't want to be messed around as she is too old" (her words not mine) but unless she gets a proper diagnoses her GP is unable to treat her for Paget's. I have only managed to get her to go for blood tests with the bribe of a shopping trip after!!!!!!

She is now very unsteady on her feet and I feel this could be due to a lack of vitd, or any other the above vital vitamins I am requesting, so want this checked but need to know if she supplements vitd could her body convert his into extra bone in her head?

Thanks in advance

Moggie x

[Hidden]

Hi,

A routine blood test for raised alkaline phosphatase (ALP) is used to help assess Paget's disease activity and also helps to determine if treatment is required (age is not a barrier to treatment). Vitamin D is important for bone health and will not make Paget's worse.

Regards,

Diana

on behalf of The Paget's Association

[Moggie in reply to Hidden]

Thank you Diana.

Moggie x

[Winifred96 in reply to Moggie]

Sorry Diana two mistakes in my reply to you

Primary Hyperparathyroidism

And 8th April not August

[Winifred96 in reply to Hidden]

I have had to stop taking Cacit D3 as I am undergoing test for Primary Hyperthiroidism and I have 6mm renal stone. I am worried that I am now low in vit D and high in Calcium, i won't know the result until the 8th August when I see my Pagets Specialist.

Is there a possibility that I will have to have my Thyroid removed. Is this problem common with Pagets patients.

I had the Zoledronate Infusion 4 years ago.

I am awaiting a hip replacement but would like to get this sorted before I have a new hip, but I suspect I will have to wait until this problem is solved.

I am 71 and first had the Pagets diognosed in my Palvis after an x-Ray in 1986.

[Hidden in reply to Winifred96]

If you are seeing your specialist next month do make a list of your questions to take with you. Try not to worry too much - you can see your GP if you feel unwell in the meantime. You can also email our Helpline: [e-mail] if you want to discuss things further.

[mousehold]

I think I am just about to be diagnosed with Pagets and am awaiting a bone scan to confirm and see how widespread. I keep going back over my history with fractures etc and now my mum's too (in a dementia home aged 89). She was once told that her calcium was far too high and it was either parathyroid disease or 'another disease which is hereditary' - I suppose he meant Pagets. She broke her hip recently and now I am wondering... did you get answers? By the way Moggie all oour family and family history is East End and I am certainly not doing calm about this latest health scare!

[Moggie]

Poor you - you must be so worried. My mum has never been official diagnosed because she wont go to a specialist so, like your mum, she has been left in limbo. I have suffered with high parathyroid levels but these were due to extremely low vitd.

My mum cancelled the GP's appt - said she didn't want to get prodded and poked about - and so nothing was concluded. She has even been offered to go to a professor in Oxford (or is it Cambridge) who is interested in Pagets and deafness but again she has refused to go. the older generation can drive you mad cant they with their attitude towards health.

Funny enough I did read recently that Pagets is an autoimmune condition when it is connected to thyroid illness - which I have - so I asked my immunologist and his answer of "it is and it isn't" which I found really helpful - NOT!!!!!

I hope you get yourself sorted soon, please let me know how you get on wont you. Just out of interest, where in the East End to you originate from?

Thanks for the reply and good luck.

Moggie x

[mousehold]

Bethnal Green, family go back to Shoreditch, Spitalfields - the Nichols! What about you?

[Moggie in reply to mousehold]

Canning Town area but used to work in Bethnal Green. Also did a lot of clubbing in Stratford and Mile End but when I do my yearly coach trip to theatre land that area looks nothing like the place I grew up in.

How are you anyway? Did they confirm Paget's. I got my answer re autoimmune and Paget's from my cousin - who's a VET - and Paget's is autoimmune in as much as it is the body attacking itself but, unlike normal autoimmune illness, Paget's adds to the body (as in extra bone) whereas thyroid, RA or diabetes takes away from the body.

Moggie x

[mousehold in reply to Moggie]

That is interesting as I had hep c for years from an NHS blood transfusion which lowers your immune system. It got so bad I had a liver transplant 9 months ago and have to take immune suppressants and the pagets has got significantly worse since then, in fact I have only just been diagnosed because of symptoms beig so bad. On friday I go for infusion of pamidrinate - have you had anything like that? They say 30% get side effects, knowing my luck I will def be in that 30%!

[Moggie in reply to mousehold]

Is pamidrinate for paget's cos if so I don't have paget's (and hopefully never will - but seeing as it runs through my mums family like wild fire I am worried about it).

You have had some bad luck haven't you but hopefully this time luck will be on your side and you wont get any side effects. Good luck for Friday and I hope it helps. Is paget's painful???? my mum has it in the head and spine and does complain about a bad back but the worse thing it has taken from her is her hearing.

Moggie x

[mousehold in reply to Moggie]

thanks for replying, of course it's your mum who has it, you made plain but I was being thick! I feel the pagets (in one bone) as over-heated and painful to touch, the worst is how it looks as it's only on my cheek and makes my face asymmetric (it might look younger than the other side, perhaps I should get in that side too!) Us old east enders are tough as old boots so business as usual.

[Moggie in reply to mousehold]

It seems very random where and when it attacks doesn't it? My mums forehead is totally misshaped, she cant find a hat to fit and her eye's seem to have sunk in but they haven't it's just that her forehead is now so large.

I am experiencing a lot of hip pain from time to time but think I have traced that back to lactose in tablets. (my great nan, my nan, my aunt and one of my uncles all have pagets in the same hip) I am on a lactose free thyroid medication but if I take something like a headache tablet (all normal tablets unfortunately contain lactose) the pain in my hips start. Don't think I'll have much chance of getting my GP to believe that one!!!!!! People with one autoimmune illness are three times more likely to get another, like rheumatoid arthritis, and I think this is what is happening with the hip pain as I did the creatine/calcium ratio test (which would show up any signs of Pagets) last year and all was normal. People with RA should stay away from dairy and this is what lactose is. Not that my GP has told me any of the above - I have research and found all this out myself.

Who is looking after your Paget's - an endocrinologist or a rheumatologist? Can you trace paget's back in your family?

Good luck for tomorrow and I hope the infusion tomorrow, I hope all goes well.

Moggie x

[mousehold in reply to Moggie]

Won't she get treated at all? I don't think it's very invasive and they say it can stop it getting worse. Mums are v annoying! Mine used to drive me mad until I realised she had dementia. It has got really bad now and I spend most of my free time (when I'm not going to hospital appnts) trying to take care of her in the dementia home. She has v bad osteo arthritis, my nan had it too and actually died of bone cancer so 'bones' run in the family. I have no idea if anyone had Pagets as it seems to be hard to diagnose esp if it shows up late in life. It has taken me ages to get diagnosed as everyone thought it was a problem with my parotid gland on the cheek. If only I'd known earlier I could have got it more under control. How old is your mum? I know what she means about being prodded about. Could you tell her about me and say it's not a very prodding about disease - I speak as someone who knows about this - had a liver transplant last September - now that is prodding!

[Moggie in reply to mousehold]

My mum's 84 and, apart from the deafness and a back ache, the pagets doesn't seem to bother her, but then her generation "don't like to complain" do they, they just get on with life and suffer in silence.

No she definitely wont go anywhere, not even to a professor who is studying deafness and pagets in the head so, because of her stubbornness, her GP cannot diagnose her and she cant receive any treatment for it and yes she does drive us all mad but we do our best (there are three out of her four children left as my eldest brother died suddenly last year - he was only 57). She looked after us for years and now it is our turn to give something back - that's the way I look at it anyway.

I think her deafness hinders her where hospitals are concerned as she cannot understand what is going on, plus I think she gets a bit frightened, and so just doesn't go. My younger brother has tried really hard to get her to go somewhere but she wont budge.

Moggie x

[mousehold in reply to Moggie]

bless her, probably best to respect her wishes, we all get more stubborn as we get older. My mum used to say "of course I can't remember anything I'm 85" and wanted to be left in peace. I hate her being in a home it's broken my heart!

[Moggie in reply to mousehold]

I'm sure you did your best in view of your complicated health issues and as long as she is being well looked after, which is the main problem these days isn't it, then a home can be the best place for people with dementia as I know from my daughter, works with dementia patients, that they can be a danger to themselves cant they.

Moggie x