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Rank: Advanced Member
Groups: Registered
Joined: 1/7/2010
Posts: 44
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Hi I hav,nt posted for ages, but as I am going to have this op. was wondering if any one else has been through it. this all started with me having to have a large kidney stone removed internally with a laser, the first attempt failed, so i am now waiting for another attempt, during the investigations they found I had a raised caicium level in my blood which i thought was to do with taking steroids, i have osteoperosis .Apparently this isnt the case its caused by a small growth on one of the parathyroids which control the level of cacium so it has to be removed as it causes srokes & shortens life exspectancy by 6yrs! also it can cause a lot of the symptoms I have with Ra exreme tiredness constipation dry mouth aching bones. Its all on the internet,
So if any one has had afantastic result after having this done, I,d love to know thanks Rose
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Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Hiya Rose
You have been thro a lot.
I googled parathyoid......I never heard of this before. I thought it was the same as thyroid - but its not. I was diagnosed with graves when I was 21 yrs old, had carbimizole (over active) for 6 months, didn't help. I had operation for partial thryroidextomy after 6 months.
I'm guessing it was for the main thyroid gland, not a sub area of thyroid. I can't remember medical staff mentioning calcium problems. They said I would have thyroid probs when I had children, wasn't quiet true, my thyroid woke up in my 30's and I was referred to endocrinoligist in Bath royal united hospital. They don't do a 2nd thyroid op, I had radioactive iodine capsual to take which killed any over active gland, once settled I was told I take thyroxine for life - which I do. Then the ra came after having my daughter.
I'm explaining all this to you to say I have experience, but not on the parathyroid. Have you spoken to ra nurse/consultant? Or the endocrinoligist for further info? Or thyroid help website? Sorry to hear this Rose, do stay in touch.
Take care
Jane
Xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Rose
So sorry you are having parathyroid probs too! I have recently had the nuclear scans etc but aparently mine is due to a connection between lack of vitamin D together with high calcium levels in the blood and the PTH levels. I have to say that having studied it all extensively, I still don't understand it at all - very complicated endochrinology! They are not removing a gland, as yet, but they have to get the calcium levels down as it is dangerous, as you say. Really hope all goes well for you - please keep us posted.
Love Jeanxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 1/7/2010
Posts: 44
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Dear Jeanne & Jane, thank you so much for your quick replies .Jeanne your problem seems very like mine except they hav,nt mentioned vit. D with my problem & they havn,t suggested treating it medically. In fact if it hadn,t been for the cosultant Mr Holland of The Royal Gwent urging me to agree to this op I would,nt be going a long with it.
Jane I am so sorry you have had to have a thyroidectomy when so young & then to get RA as well. Sometimes life doesn,t seem that fair You sound like someone whose glass is half full rather than empty & I think this is the only way to have a life with Ra. & having a larf! You can help me in that Ifeel really freaky about having my throat cut open while they hunt for these minute glands. Was your op very painful afterwards & how long did it take for you to recover? your op was probably much bigger. I think I,ll be in Hosp. for 3 nts. having it 3rd oct. so when I,m up to it I,ll post the result. it could be great according to one person on the net after a month her thinning hair started to thicken & she was able to give up her High b p, pills.! Hears hoping & thank you both for being supportive really appreciate it, love Rose xxxx
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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Hi Rose
The op was just before christmas, I was in for five nites. I had it done at Wroughton hospital (all gone now, new houses) they did clips (13 I kept them for a while in a container)!!low down on the crease of the neck. I remember I couldn't move my neck properly for a few months (swelling I guess). Since then I have a little pillow for bed, I have a feather little square one from john lewis. It took a few months for the red scar to settle - its a very fine white scar, does go red when I have the odd tipple!
When you have it done, think beyond the op, when it settles down. When you sit up/get out of bed, take it steddy after because it will be sore.
Your right, glass half full. Having ra diagnosed was a huge shock, if it wasn't for being a new mum I think I would of taken it worse. I guess we all have our good days and bad, laugh and cry.
I'm glad to join the forum for a chat or helping each other out.
Need a holiday, smell the sea, walk on the beach, that's my tonic. End of July I see the consultant to see if my pins can come out of my toes...
Rose, any questions write them down about procedures and ask the hospital. When I found out I had ra I asked my rheumy consultant if I can meet other people with it, she got in touch and said noone wanted to talk to me!!!
Good luck for October, pamper yourself before, get some candles in, buy some mags and put away for october - you may not fancy reading straight away, put your legs up and relax the best you can! Not everyones cup of tea, I love lavendar smell bags (hanging on the bed) Do you have someone to look after you?
Take care
Jane
Xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Rose Just to say that when I had my parathyroid scan results, they showed up problems with the thyroid (goitre) and the parathyroid glands couldn't be seen through the swollen thyroid! I MAY still have adenomas, but am damned if I am going to be carved open on the off-chance  My PTH levels are coming down very slowly, but the blood calcium levels are not. However, I have been told that the calcium levels DO rise when you are on massive monthly doses of Vit D. Pleae keep in touch. JANE: You have really been through the mill and I am so sad to hear of all your problems BUT I love a woman with a positive outlook and your holiday dream of the sand and the sea is also one of mine  How old is your little one now? Can't think of a better incentive to help you look forward to life with a positive attitude! (My "little" one is now 40 and her little ones are 4 and 7!!) Much love to you both Jeanxxx
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Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
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 Hi Jean My little one is 5 ! She bosses us around!! I asked what she thinks we should get her daddy for his birthday....spiderman outfirt, day out to peppa pig world! Laughter is a must in our house, important that she has a normal fun up bringing. Good taste sea and sand - relaxing and uplifting, I can smell it now. Love Dorset/Devon/Cornwall/Wales......soon hey. Got to nag my hubby to get lottery ticket for an ever lasting holiday! Take care, Jane Xx
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Rank: Advanced Member
Groups: Registered
Joined: 1/7/2010
Posts: 44
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hi Jean & Jane SO lovely to hear from you both again .It sounds as though your DR.s are keeping a good eye on you. so hopefully you won.t have to have what sounds like a pretty gruesome thing Jane. What a frightful time you have had. You are certainly braver than I am.when you mentioned the sea air & walking on the beach like you Jean I was uplifted At the thought.WE have had to postpone a holiday to Spain Because of the kidney stone @a family wedding because the dr said It was urgent. That was 3mths ago so IFixed a holiday in the gower &we are off next FRriday then as soon as we are back Ihave thqe 2nd op &after a mth recovering we are determined to get to spain then back for. Oct op .I have to look after my old man who has cared for me in the most devoted way for the last 10yrs. hE loves the sun. With out him JAne I couldn't,t have carried on. I have been on cimzia. Anti tnf for the last 2yrs Made a big difference IHope your toes will be ok. How lovely to have a little one.LIke you JEan my 2are 43 &41 &4 grand kids the lights of my life phoebe 13 Luke 11jay 5 &charlie 3 with another on the way . I
I have so enjoyed our chat that hope to again tak Care both of you &love to you both 'Rose & thanks for the post op tips Jane I,m smelling that lavender already xxxx
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