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living with primary hyperparathyroidism

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Kathi209
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Post by lozza Tue Apr 08, 2014 7:50 pm

First topic message reminder :

Dear all,
Thank you for setting up this forum, i have been reading posts on old forum, and am pleased i can now post. I  have been seeing endocrine consultant for nearly a year. i first went to GP and had bloods done, calcium corrected at 2.57 ref range 2.2-2.6, PTH at 11.7 ref range up to 7.5. I had an ultrasound scan done which states could be thyroid nodule or intrathyroid parathyroid and only time will tell.

had 2 hospital appointment, more blood done, calcium towards high end of ref range and still high pth of 9.5, normal vit d of 78.

Lots more blood done- still no discussion about what i have, PTH came down and so did VIT D, calcium still high end of range, now been taking vit d tablets, as consultant requested.

Oh yes, lots of symptoms, bad mood swings, feeling sick, stomach problems, and lots of bone pain.

Due to go back to larger hospital in East anglia on may 23. This is 6 months from last appointment, currently feel like i am going round in circles, there was talk of doing nuclear medicine scan in nov 2013 from registrar, consultant said "not yet" , so still no confirmation of what is going on.

I really do want answers, but the hospital seem to just want to wait, i am 41 years old, Mum has graves disease. I have written to consultant about all of this, they said i must wait, they might refer me back to GP for further monitoring- i have asked what are we monitoring- but don't get anywhere.

no mention of surgery, 

thoughts most welcome.

best wishes

Lozza


Last edited by lozza on Sun May 04, 2014 9:37 am; edited 1 time in total

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Post by Tigerlily Tue Apr 29, 2014 8:25 pm

Thanks for caring, Jasmine - I've posted a new thread entitled "Saw the foot lump man".
Thanks for the hint about asking re waiting times - will do that tomorrow.
Tigerlily xx

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Post by Jasmine2 Tue Apr 29, 2014 9:01 pm

Tigerlily wrote:I've posted a new thread entitled "Saw the foot lump man".

Have you? Can't see it .....but then I've had a really 'low' day today and my brain fog is a real pea soup-er, so it's probably passed me by!  I'll take another look.....

Jasmine x
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Post by Lucycatnaps Tue Apr 29, 2014 9:38 pm

Hi Lozza,
I am really hoping that you will get some answers soon and that you are a step nearer to being cured.

Tigerlily, I too cannot see any posts re your foot appointment.
Hope it went well too,
Sue
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Post by Admin Tue Apr 29, 2014 9:59 pm

Tigerlily wrote: I've posted a new thread entitled "Saw the foot lump man".
Tigerlily xx

Hi Tigerlily

I have not found your topic entitled "Saw the foot lump man" on our forum.

I hope that this is not another one of those disappearing posts :-(

Edwin
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Post by Tigerlily Tue Apr 29, 2014 11:06 pm

No Everyone - sorry - I started it but dinner came in-between and I only have the draft done. Will post tomorrow - no further forward really, but foot man was helpful as far as it went - unfortunately no further than the ankle!
Tigerlily xx

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Post by lozza Wed Apr 30, 2014 3:38 pm

Dear all,

Thanks for words of support, I have mixed feelings about ultrasound, this will be 2nd scan, last one done a year ago. I just hope it will help tell them what is going on with me.

Tigerlily, good news about them repeating tests, clearly there weren't expected the last results you had, why don't they listen to the patient, I just don't know, we shouldn't have to ask for these tests, they should be telling us what test we need!

yes, would love to read about the foot clinic, If we are both at Addenbrookes, on same day, have to catch up and go for coffee. I have been going to Addenbrookes for a year now, how long have they been seeing you ?

Perhaps we should set up a endocrine "Social Club" at the hospital as I feel like I am always there !

best wishes to all,

keep fighting

Lozza Very Happy

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Post by tiniegil Wed Apr 30, 2014 4:30 pm

Just wanted to say   Smile  a big HI and nice to also have another newbie on here, is taking me a long time to read up on everything and looks like some very experienced nice people to ask too. Welcome

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Post by lozza Fri May 02, 2014 5:10 pm

Dear all,
 I had  a phone call from my GP surgery telling me that Addenbrookes have canceled my ultrasound scan for May 15th as the referral has gone to the wrong clinic ! i have no idea what part of my body they were planning to scan. i seriously can't believed this, i now need to wait for hospital to send me another appointment.

Grrrrrr

i am really mad about this. Has this happened to any one else?

have a good weekend, thanks everyone for making welcome and keeping my sane!

Lozza Crying or Very sad  feeling a bit annoyed !

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Post by Tigerlily Fri May 02, 2014 7:49 pm

Oh, no, Lozza - not something else to contend with at Addenbrookes ....

But a new appointment will probably arrive within a few days - they seem to be OK with appointments handling, but not with diagnosis or treatment!

I've been going there since summer 2011, seeing Dr Diana Wood in the Thyroid Clinic and then Dr Flynn for high cholesterol at the Lipid Clinic there. But the length of time between routine appointments has grown now to 3-4 months and I've been speaking to them of pHPT since February 2013 without anyone wishing to even talk about the possibility let alone refer me to the PTH Clinic.

However, George Wishart leaving (he did minimally invasive PTH surgery, I believe) was probably quite a blow to them, and I expect they know that the PTH Clinic is oversubscribed so are blocking access to it, if people like yourself are not even being seen there, Lozza.

What an absolute shambles the situation is there! I've come to the conclusion that it might be a "centre of excellence" for the students who get to go there, but not for the poor patients being treated there!

Try and relax and have a restful weekend, Lozza. I'm sure the new appointment will come soon. If it doesn't, there is such a person as the "Clinic Co-ordinator" who, in the Thyroid Clinic is very helpful and usually picks up their phone, whereas the reception staff rarely do. If you explain your situation to them, perhaps they might be able to move things along. A call to the general hospital switchboard might get you their number, or I'll try and dig out the number for the co-ordinator of the thyroid clinic who might even be the same person, or should know who their opposite number in the Endo Clinic is.

It's OK to join the "annoyed" club here, and we'll get one started between us at Addenbrookes when we meet up for coffee!

Love Tigerlily xx

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Post by Lucycatnaps Fri May 02, 2014 8:19 pm

Ho Lozza,
Ohhhh what a blow for you.  I know exactly how it feels when they cancel appointments and scans but as Tigerlily says they usually move a bit faster when  it is their error so I think you will get a replacement date quickly.  Fingers crossed for you anyway. 
Sue
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Post by lozza Sat May 03, 2014 7:27 am

Hi Everyone,

Thanks Tigerlily and Lucy- yes hopefully they will sort out an appointment soon, at least i didn't go along to the wrong scan ! good idea about  phoning clinic coordinator, i will wait till after bank holiday.


thanks all, i will now switch off as i have had my rant!!

best wishes

Lozza

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Post by lozza Thu May 15, 2014 9:34 pm

Hi all,

 I have now got my neck ultrasound appointment for monday 19th May. ( they had made a gynae ultrasound appointment in error )

good job the wrong ultrasound was cancelled, i think i might have questioned why they were scanning my stomach, instead of my neck !

best wishes to all

Lozza Very Happy

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Post by tiniegil Fri May 16, 2014 1:38 pm

That is really good news lozza, do hope you are finally diagnosed now. Cool

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Post by Tigerlily Fri May 16, 2014 5:33 pm

Great news, lozza! I'm sure it can't come soon enough for you. Keep us posted.

Love Tigerlily xx

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Post by lozza Fri May 16, 2014 6:13 pm

Thanks everyone,

Must confess I am a complete wimp when it comes to going to hospital, I have such a fear. I rang my sister and said " I have problems getting through the hospital doors", there was a big pause on the phone and she said " well your not that big ! "- this wasn't quite want I meant, but did make me laugh.

I know this is just a simple scan but I do get so worked up about it all. Anyone else like this ? and how do they cope ?

best wishes

Lozza Very Happy

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Post by Tigerlily Fri May 16, 2014 7:18 pm

Hi again, Lozza

I can understand your feelings - I'm a total scaredy-cat, but even I can manage an ultrasound. It's needles that (don't) do it for me. And I've had my fill of those lately.

Also, I find the people who do ultrasounds seem to be ultra-intelligent and ultra-sympathetic, and are a mine of information, so ask them a lot of questions if/when you get the chance.

You'll be fine, girl!

Love Tigerlily xx

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Post by lozza Fri May 16, 2014 8:25 pm

Thanks Tigerlily,

I know I am being a wimp, just can't stand the places. Mu mum was in and out of hospital most of my childhood- and yes this was Addenbrookes.

We all have to fight so much to get anywhere, it takes so much energy, some time I just want to throw the towel in and say " I give up with not knowing what have" 

I am just abit worried in case this is another inconclusive report like my last scan.

I will ask question and I would like to see a picture, would help to understand things.

I will try and be brave ! affraid  affraid  affraid  

Lozza

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Post by Tigerlily Fri May 16, 2014 8:56 pm

Absolutely, lozza!

This is one of the easiest things to get through, once you can get through the door.

It's probably the memories of your Mum connected with Addenbrookes that are the problem.

Take heart from the fact that I had a good experience there today - amazing! My GP had tested my Growth Hormone and IGF-1 (to investigate pituitary disorder) and they both came back very low, so as I was giving blood there today anyway I wanted these two added to my blood test form, to see what the Addenbrookes' levels would be. I had toyed with the idea of just writing GH and IGF-1 on the form I already had myself, but felt that I would have got a rocket if they had found out I had done it!

So when I got there, I explained the situation to the young dark-haired (wiry, with glasses) male nurse who has taken my blood pressure there for the last 18 months (!!), and he took the form and got the two extra tests written on it for me! I couldn't believe it! Bless him!

So sometimes things do work at Addenbrookes - and they will work out for you with your ultrasound.

Love from Tigerlily xx

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Post by lozza Fri May 16, 2014 9:05 pm

Hi Tigerlily,

Thanks for info, glad you had a good experience at the clinic. Yes the nurses you see for blood pressure,bloods, weighing me etc have always put me at ease- I think they have on my notes " she will run off"

I know my fear is all down to mum illness, and going back and forth at hospital. I am back at endo clinic fri 23rd, so might have some news! especially as they will have ultrasound.

Now just need to yet through front doors and make it to level 3 !!

it was good of them to do the bloods, do they give you print out of test results? I would like to see how I am doing, will ask when next end. I think I have met the nurse you are talking about.

best wishes

Lozza Very Happy

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Post by Tigerlily Sat May 17, 2014 9:38 am

Hi lozza

Yes, he's a sweet guy, always smiley and polite - I bet he's measured your blood pressure and weight at some time.

Ah, not so easy to get copies of blood test results at A'brookes, not so easy at all. In the clinics they all say they are unable to print them off. In 18 months of going there, I've only ever got one set printed off and I had to ask the secretary for that, and she wasn't too pleased to be asked, and she had to ask a doctor first if I could have a copy, etc., etc.

I always take pen and notebook to each consult now and ask to be given the results (with the ranges) so I can write them all down. They don't like it because it holds them up somewhat, but it seems to be the only way.

It's all go next week for us both then, by the looks of it. Hang on in there, lozza, and we'll compare notes afterwards.

Love from Tigerlily xx

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Post by Admin Sat May 17, 2014 11:32 am

Tigerlily wrote:
Ah, not so easy to get copies of blood test results at A'brookes, not so easy at all. In the clinics they all say they are unable to print them off. In 18 months of going there, I've only ever got one set printed off and I had to ask the secretary for that, and she wasn't too pleased to be asked, and she had to ask a doctor first if I could have a copy, etc., etc.

Under the Data Protection Act, you are legally entitled to request and receive copies of all personal "data" that any UK organisation holds.
This includes your medical notes and test results.

So, a doctor or hospital cannot refuse to let you have a copy of your blood results.

It's probably more a matter of inconvenience than anything else.
When I was in hospital recently, there was no problem getting my blood test printouts, but they had a printer on the ward, so it was no hassle.

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Post by Tigerlily Sat May 17, 2014 11:39 am

Many thanks for that, Edwin - that's very useful.

Hope you are having a sunny and restful weekend.

Tigerlily xx

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Post by pilipala Sat May 17, 2014 12:11 pm

I have managed to get hospital test results printed out via my GP but it is always a major battle.

Easiest route is to ask the GP to print off old results during an appointment since they all have printers for prescriptions and have always been happy to.

Going via the receptionist is much more involved. They firstly always say I have to contact the hospital. I tell them the hospital has told me to contact them.
They then say they have to get a GP to approve this. I say no problem I'll come back tomorrow to collect.

Smile sweetly but be prepared to be persistent. Other excuses I've had include 'we can't get on the hospital system because we've forgotten the password', 'there's a note on the file which I'm not allowed to read so you'll have to talk to the doctor about it.' It took nearly 4wks for the hospital to send me a letter letting me know my vitamin D was insufficient.

Print outs are very useful, they include extra details such as the time the bloods were taken and when individual test results logged, plus notes on the range used etc. 

Hope that helps someone,

Dee

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Post by Admin Sat May 17, 2014 12:56 pm

pilipala wrote:I have managed to get hospital test results printed out via my GP but it is always a major battle.

Easiest route is to ask the GP to print off old results during an appointment since they all have printers for prescriptions and have always been happy to.

Going via the receptionist is much more involved. They firstly always say I have to contact the hospital. I tell them the hospital has told me to contact them.
They then say they have to get a GP to approve this. I say no problem I'll come back tomorrow to collect.

Smile sweetly but be prepared to be persistent. Other excuses I've had include 'we can't get on the hospital system because we've forgotten the password', 'there's a note on the file which I'm not allowed to read so you'll have to talk to the doctor about it.' It took nearly 4wks for the hospital to send me a letter letting me know my vitamin D was insufficient.

Print outs are very useful, they include extra details such as the time the bloods were taken and when individual test results logged, plus notes on the range used etc. 

Hope that helps someone,

Dee

The problem with trying to get hospital results via the GP is that you cannot assume that the GP receives all of the results.

As far as I know, the GP receives a letter, which may include some results, but I very much doubt that GPs generally receive a full printout.

In my experience, attending many hospitals, my GP relies on me to give them the results printouts that I have collected during hospital appointments, which the GP then adds to their computerised records.

Edwin


Last edited by Admin on Sat May 17, 2014 12:59 pm; edited 1 time in total
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Post by Admin Sat May 17, 2014 12:59 pm

Tigerlily wrote:
Hope you are having a sunny and restful weekend.

Tigerlily xx

Yes thanks, Tigerlily.
Not too restful, but not to stressful either.

Edwin
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