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Hi Everyone

Post by tiniegil on Fri Apr 25, 2014 1:15 pm

First topic message reminder :

Just to say Hi to everyone great to have found a forum for Hyperparathyroid - now diagnosed by GP as having this after many months of bloods etc, I was also taken off bendofluazide as they said this may be causing high calcium levels, however the first blood test showed it going down and then two months later back up to where it was before.

 I have had a ultrasound which shows Gall stones and enlarged spleen plus I am also Hypothyroid and take 125g of Levothyroxine. My GP says he will monitor me but no mention of an op, unless I have another drastic symptom !

 I originally went because I feel tired, queasy was either having to run to loo for bowels or constipated, skin is dry and very spotty like acne almost. Pains in sides and all joints, make me feel and walk like I was 30 years older. As for sleep that is also bad - sounds like a recipe for disaster lol. This week have had a 24 blood pressure monitor, which I now have to see my GP again as she says it was 175, weight is terrible and just goes up and up. so you can imagine after finding your lovely new site and info available I am keen to see if it can be sorted.

I came across a clinic in Florida that gets mentioned quite a lot on the internet, so I am keen to know if there is anywhere here in UK that have really good info on this condition and what can be done or indeed a person to see. I am not keen on the wait and see how you go bit really as GP mentions, as I wish to have a normal daily life again, so if I have to pay then I will have to start saving and go for it I am of course very interested in any else thoughts or what you have done to help get things sorted out.

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Re: Hi Everyone

Post by tiniegil on Mon Apr 28, 2014 1:13 pm

Ah I see, have only been diagnosed in last 3 months however not been told anything else will be done other than a repeat blood test which is now July time, no referral has been made to endo at all, he says he speaks with them (Hosp) at this point so not sure if I should be mentioning about bone scans at all? I have read that that seems to be something they do do.

 I had the ultrasound because of the blood tests I had been having, which showed up the enlarged spleen and gallstones and he did mention about repeating that one in the future. I was also asked  twice if I drunk alcohol at all, and I said hand on heart last sorta of drink I had had was a wine and lemonade Christmas day, should have asked why as on second time got asked again, can anyone think what this may have been re my blood tests results as I do  not drink at all unless a special occasion where I may have one glass (I always feel really bad asking lots of questions in docs as now only got 10 mins tops so tend to keep a bit quiet) Embarassed . Looks like I had better pursue the route via NHS for now - however will not rule out private. its more about quality of life I think which currently I a finding getting more difficult with lots of symptoms and differing ones each day to most of the time- actually was trying to think of a day where had no symptoms  umm not easy to remember that.  Rolling Eyes . Have to remember someone always worse than you though.

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Re: Hi Everyone

Post by Jasmine2 on Mon Apr 28, 2014 2:19 pm

Tigerlily and Nelly, my experience with Dr Miles Levy was a really positive one in terms of tandem private/NHS consultations.  Before my first surgery last August, when Dr L confirmed my diagnosis he offered to refer me back into the NHS (without me having to ask) for surgical opinion at the joint endocrine services clinic, and for ultrasound and Sestamibi etc, at the Leicester Royal Infirmary where he does his NHS work, and in fact he did set that ball rolling without the requirement of a new GP referral, so there must be a mechanism for them to be able to do that.  However, I chose to see Andrew McLaren for my surgery as he had been highly recommended by Simon! When I saw Dr Levy again a few weeks ago following my second surgery in Tampa, when he diagnosed my persistent PHPT as still persisting, he again offered to do the same thing ie refer me back to Leicester Royal on the NHS, only this time I've chosen to see Fausto Palazzo.  I did actually tell Dr Levy that I would let him know about Leicester but even so I received a letter this morning for a clinic appointment there on 21st May, so quite clearly consultants are able to do this without making you get a fresh referral from your GP.  It's probably down to their personal views on what could be perceived as queue jumping, as you say Nelly, so I guess you have to ask the question, or be prepared to have a private consultation and wait for a Choose and Book appointment if the consultant won't refer you back into the NHS.

Tiniegil, perhaps you could have a think about everyone else's experiences of the processes they went through to get surgery, because surgery is the only cure and the only thing that is going to hopefully make you feel well again, have a good read of Parathyroid.com and make a note of lots of questions to ask, then make a double appointment to see your GP so you don't feel rushed. Let us know if we can help with what you need to be asking or pushing for, we'll all be glad to help because we all know what you're going through.

Jasmine x
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Re: Hi Everyone

Post by Hadleigh on Mon Apr 28, 2014 2:43 pm

My private Endo did refer me to the surgeon, who she works with both privately and on the NHS but I then had a letter from the surgeon saying he needed a GP referral before seeing me in the NHS clinic, there was no waiting list so didn't take any longer.

I believe technically a private Consultant can't refer to an NHS Consultant it has to go via a GP but presumably they have a way round that if they choose.

I was seeing 2 endos 1 private and 1 NHS at the same time at different hospitals, my GP wasn't happy about it but I wanted to choose which one I went with.

Nelly
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Re: Hi Everyone

Post by Tigerlily on Mon Apr 28, 2014 2:51 pm

Thanks for this information, Jasmine and Nelly. To be frank, I hadn't thought of it as queue jumping at all, just of paying for the initial consult to get a diagnosis sooner, and then reverting back to the good old NHS and waiting, however long, for an appointment (with the same consultant) for further tests and treatment.

Tigerlily xx

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Re: Hi Everyone

Post by Lucycatnaps on Mon Apr 28, 2014 4:12 pm

Hi everyone,
It depends on your local Hospital Trust and what policies they have in place.  Certainly Lincolnshire will not let you start private and then be seen back in the NHS for further treatment.  Also they always send you back to your GP if you need to see a different consultant, it is utter madness to my mind as I am under Rheumatology as my umbrella man, he refers me by writing back to my GP asking them to write a referral back to each consultant, it is delay tactics.  I was seen last November by Rheumie when all my symptoms were starting.  He ordered bloods and said see you in 6 months which is next week.  As I left, the clinic nurse said we have a new scheme now, instead of sending you your appointment in a couple of weeks, it will be sent just before you are due to come as too many people do not turn up if they are given them now.  I rang the hospital today as I have not got any appointment for next week and thought I had better chase them up.  It is difficult to plan when you don't know when it will be.  So the upshot is, no appointments available, am not showing in next few weeks schedules and clinics are fully booked for several weeks.  The consultant is visiting tomorrow so she will ask if he can fit another clinic in, they are over subscribed and understaffed and she said its a nightmare.  Goodness help anyone who is really sick!  I feel like writing to my MP about all the visiting consultants who only come one day a week.
Fed up! 
Sue
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Re: Hi Everyone

Post by Little Audrey on Mon Apr 28, 2014 4:18 pm

I feel so lost with this thread.  Sad  I feel so badly that I can't add anything or help.

Audrey

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Re: Hi Everyone

Post by Tigerlily on Mon Apr 28, 2014 4:41 pm

Don't worry,. Audrey - it's just the UK NHS falling apart a bit at the same time as we (60-somethings) are as well! Ironic, isn't it?

I had private health insurance all my working life and only used it once for a back operation. Now I haven't got it, it looks as if I need it!

That's quite right about the consultant-to-consultant referrals being blocked. I was told that by a consultant who spelled it all out in a letter to my GP, bless him.

Not sure where to go from here - back to the drawing board, but thanks for all the info.

Tigerlily xx

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Re: Hi Everyone

Post by Amanda Lynne on Mon Apr 28, 2014 5:03 pm

Hi Sue that is a pain in the bum, that means you will never know if they've booked you an appointment until it's too late, what a stupid system.
Tigerlilly I was thinking of doing the same thing, I expected to be referred back to GP anyway, it just means that you will get a quicker appt for initial consult and then you will at least know what his thoughts are about you having PHPT. I did it once before for a haematology appt as my then private insurance didn't want to pay for it as I'd had the problem before I signed up with them. I felt a bit awkward when he rang the haemo ward and sent me straight down for infusion on NHS, I did feel a bit like pushing in but my Ferritin was down to 3 which is a bit dodgy.
Amanda xxxx
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Re: Hi Everyone

Post by Tigerlily on Mon Apr 28, 2014 5:41 pm

Thanks for that, Amanda. My husband has just said "Pushing in? Bring it on!"

I don't think I have much more time for my delicate sensitivities in all of this! When I had the DEXA scan they only did my left "non-dominant" arm because I said I was right-handed, even though I told them that I had severe pain in my right arm/elbow/wrist/fingers (even at rest). My husband told me if they offer me another one to just LIE and say that my right arm is my non-dominant one, so they do that one! I would never have thought of that!

It's getting to the stage of every-PTH-warrior-for-themselves now, although I still worry about the service that other people are getting here in the UK - you know, the ones who for whatever reason are unable to do the research we do and unable to be their own advocate in consultations etc. I really feel for them.

Thanks, Amanda, I feel better about it for what you said - maybe we'll be meeting up at
Mr Faustus's!

Love Tigerlily xx

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Re: Hi Everyone

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