Post op follow up

First topic message reminder :

Well, I'm now six weeks post op Tampa! As most of you know that was my second PT surgery, since which my calcium and PTH have still not returned to normal.  I'm seeing my endocrinologist - Dr Miles Levy in Leicester - tomorrow for a follow up appointment so I should know in a week or two, after more tests for him, where I'm actually at with all this.  I'm still having some HPT symptoms but I don't know yet if these are just lingering as part of the recovery process, or I do indeed still have a persistent primary hyperparathyroidism.  Time will tell, watch this space ......

Jasmine x

Rant on, Jasmine, my friend.    You have every right to.    It is so darned sad that we must all struggle and fight every inch of the way on our journeys through this stupid disease, and you have had more than your share of struggles and battles!!

I agree that MANY doctors should NOT be doctors! I am very happy you have found a good, decent one in FP. There are a few good ones out there.     

One of these days, something WILL go right for you!!!     Hopefully, VERY soon!

And, Amanda, that is unbelievable about the glasses!! Wow! what is wrong with these doctors?!

Audrey

Hi Jasmine,

I just don't believe it- what a prat ! why can't Consultants and GP work together. You have every right to rant, I am having a rant for you.

Addenbrookes forgot to do my calcium bloods for my 6 months review, I turn up to be told " we have read your notes and found out we haven't done your calcium, oh your PTH is high again" no one told me, I would have come in again and got more bloods done.

The trouble is ther just don't tell us what they have missed off, has your GP not heard of using a pen ! instead of just his computer, of course another time you will get " the computer system is down, I can't do anything " perhaps we should start a " what have they missed this week thread " so we can keep all of this in one place.

I am sure you will get answers soon, once Mr. P has your results, I think GP just don't know what to do with Parathyroid patients .

lots of hugs
best wishes

Lozza 

So sorry Jasmine. that would have worked out so well for you if your Gp wasn't so  stupid. So do you now have to carry your wee on the train, or did your GP get educated on what to do. Gee wiz.

Well he rang me again this evening and he was non too pleased when I  told him I had phoned the pathology lab to get instructions for him on what he needs to do, and I got the impression he wasn't happy about having to ring them for instructions either - well tough luck mate, you're my GP so get on with it!!!!! I told him I would ring tomorrow to collect everything I need to repeat the 24 this weekend.  He said a very begrudging "I'll see what I can do ......" Honestly, it's like pulling teeth and I'm getting very weary of having to take the lead myself all the time but I have no option with having a prat for a GP! (Thanks Lozza, it made me laugh out loud when you called him a prat - yes! he is a prat ......). So, to answer your question Kathi, hopefully I won't have to deliver my wee on the train.  Actually, if it comes to it that FP isn't happy with the farce at my end and insists I go to London to get it done properly I've decided that I'll stay overnight in London to get it done. Whatever it takes.....I've so had enough of it all now!

Jasmine x

Hi Amanda and Jasmine

Ye gods, what you two are having to go through is enough to make you scream out loud.
Twin prats, goats and monkeys, and similar mutterings.

I can only suggest a cup of calming tea or a large glass of something stronger whilst you try and get over it. These people have no idea of what you are going through, having to go backwards and forwards to the GP's and chasing them up all the time on the phone.

Amanda - I hope you told him the "wrong" glasses suited him and he'll look a prat for the rest of his life, and Jasmine - I have the address of what looks like a nice family hotel very close to the hospital at which you are seeing FP, so let me know if you'd like the address.

Deep breaths, Girls; chins up, and trudge on - lots of Love from Tigerlily xx

Hi Jasmine & Tigerlily
Your GP is awful what a way to treat your patient. He knows you are battling so much and just won't put himself out to help you in any way, it's unbelievable he should be struck off. If you were someone old and infirm who didn't have the knowledge or strength to fight this man who knows what would happen to them.
If you do have to stay in London to get the 24 hr done send him the bloody bill for it !!!!!
Tigerlilly any balding man with a very large nose should know that large tortoise shell glasses would make him look immensely stupid, so if he took my advice telling him they suited him I'm more than happy.  
Love Amanda xxxx

JASMINE - please post again soon so that we know that you haven't self-combusted!

AMANDA - well done, girl! Thought we could rely on you there!!

Lots of Love and Hugs from Tigerlily 
(now even more anxious for a meet-up at FP's place with you two feisty forum friends - everyone welcome!) xxxx

Hahaha! No I haven't spontaneously combusted Tigerlily, however I am steaming slightly, but that's more to do with the large Pinot Grigio I just necked!  Bit like putting out the fire with gasoline ..... Ooh that's showing my age a bit - anyone else remember that song? A real blast from the past.  So I'm nicely mellowed now, ready to go into battle once more tomorrow!

Just waiting now for Audrey to produce the inaugural copy of the Endocrine Times ready for the ID parade at 'Tea at the Ritz'. 

Jasmine x

Keep on steaming Jasmine, I vaguely remember that song I think. Tea at The Ritz, I've been once yum   
ID parade hahahaha, do we have to wear a carnation in our lapel or is that some dodgy dating agency thing !!!!!
I bet if you put a few of us in a room full of strangers it wouldn't take us long to seek out each other. PTH radars on   Mind you it might just be the stressed look on our faces and the odd limp !!! Plus we would all be queueing for the loo at the same time.
Perhaps we should all carry our 24 hr samples, not only would it identify us but it would probably clear the room pretty quickly.
Jasmine I think Dr Audrey Endocrinologist should prescribe Pinot Grigio for you regularly.
Love Amanda xxxx

Well, let me grab my prescription pad, and I will order Pinot Grigio for the whole gang!! I'll even have some, and I don't drink! Maybe that's my problem!

Jasmine, I think you should take that jug of wee and smack your GP in the head with it! Maybe that would wake him up! Oh, my goodness, I'm getting violent here!    I must control myself. Nah, that's no fun.

Dr. Audrey

Jasmine,
    I am trying to find words as I read what you are going through with the results of your labs and the fact that you need the 24 hour urine done correctly.  It's beyond ridiculous that this is happening.   I was picturing someone getting on a train trying to disguise the container of urine, maybe in a Harod's bag? 
    Sure wish these practitioners could get it together.  Keep prevailing. 

Nancy

AMANDA, 
      I am dumbfounded at what your practitioner did with his stupid glasses    !!!  What is wrong with this person.  That is so unprofessional.  
      When you said in a prior post that we could do a better job with prescribing I think you are so right.  It doesn't sound like it is all that easy to switch practionters either.  That is the way it is over here too.  And who has all the time, money and mental and emotional energy to run around trying to get appropriate treatment. 
       We all, you, Jasmine, and many of us just have to, have to find the mental and emotional strength to keep on.

    You have it I believe Amanda and the humor to go with it.

  xoxo,   Nancy

Hi Nancy
How are you any news on the lump they removed. Sorry if you have posted an answer to this already.
I can imagine Jasmine on the train with that bag, you can imagine everyone thinking mmmmm Harrods bag bet there's something lovely in there  They wouldn't want to steal it though it would be a bit of a shock !!!!!!
Hope you are keeping as well as poss.
Love Amanda xxxx

That is just so funny, Ladies - the inaugural copy of the Endo Times, the Harrods bag, and the fact that we'd all be queuing for the loo at The Ritz together at the same time!!

I needed a laugh today - my hip and right arm have been playing up and this darned fluid and strange lump on the side of my face isn't getting any smaller. No-one else is able to see it and the lighting was so bright at Addenbrookes yesterday that the registrar said she couldn't see it either. But in my shadowy bathroom, I can see a definite lump, and I even managed to photograph it!

The things we get up to, eh?!!

Nighty night and Love from Tigerlily xx

I was like   and   and   

And then I was like   !

Words fail me concerning those individuals that call themselves Doctors. But your humour is brilliant ladies!

Love
Brigitte x

Well, it didn't end there Brigitte - oh no, nothing is simple in HPT land! So I rang my GP's the next morning as planned to make sure the quack oops doctor had got his a**e in gear and found out what he had to do to get the job done, and that all the paperwork and equipment was ready for me to collect. "Oh yes" said the receptionist "he's done all the forms and they're here for you to pick up" (my heart sang .....) "only one problem though, we don't have any canisters for the collection, we've ordered some and they'll be here in about a week" (my heart dropped into my boots ....).  So I had to ring the Path lab at the hospital AGAIN to ask if I could pick one up from there "oh no" he said "you can get one from your doctor" so off I went, into one again declaring all that's wrong with the service I don't get from my GP practice!  I heard him waving the white flag as he told me it was fine to pop in and pick one up! 

So, I'm on 24 duty again from 7am tomorrow.  Hope there's no cock ups this time, wish me luck......

Jasmine x

Well Jasmine, *never* should your heart sing in HPT land! When this is all over... see my optimism there?   When this is all over and you write your memoirs, no one (except us) will ever believe your series of nightmares!

Best of luck for your 24: such fun for you! I'm already crossing my fingers and toes in anticipation of it getting back to the lab and tested without any further hitch. Positiveness is a key issue here!

Take care.

Love
Brigitte xx

OMG Jasmine, just one thing after another! Hope things are "flowing" better today though - although it's so hot here I shouldn't think you will be accumulating much for them to test!

Love from Tigerlily xx

Stupid GP can't they do anything right. In the words of Brucie (well these weren't his actual words) keeeeeeep on weeeeeeing da di da di da da da, da di da di dada.
Love Amanda xxxx

Jasmine I have everything crossed for you. Loved the song Amanda.

All done now, Jasmine?
Bet you had a great weekend just sitting around all the time!
Sorry, m'Dear - toilet humour never very goes down very well!

I'm off to bother the GP again today to try and get an urgent US on this lump on the side of my jaw - taking Peter for back-up. Will report back on progress.

Is there even such a thing as an urgent ultrasound?!

Lots of Love, Tigerlily xx

Yep, all done, just got to deliver the goods now; it's just a wee drive away ....   sorry, couldn't resist it - and I'm not even Scottish!

My hospital lab are insisting I have a blood test concurrently as well as they want to do their own calculation for FHH, even though FP only wants the calcium:creatinine excretion values. I can live with that - belt and braces and all that .....

Has your lump increased in size Tigerlily?  Yes, the GP can request an urgent US - good luck, hope he agrees!

Jasmine x

Jasmine, you're a comedienne   Hope your delivery arrives safely! You must be good at giving up your blood now, in the name of HPT. My veins shrivel up and disappear if there's a long queue of other eager blood givers. 

Good luck at the Docs, Tigerlily. 

Love 
Brigitte x

Good luck Jasmine get rid of the wee wee. I think it's probably a good idea for the lab to test for FHH second opinion is always good. 
Tigerlily hope GP pulls his finger out and gets urgent US sorted for you.
Amanda xxxx

Thanks, Ladies - mission accomplished.

Feel a bit of a nit, having cried all over the young GP when my husband told him that I was coming to the end of tether with it all, but it did the trick.

It's walk-in service for the X-ray dept at the local hospital so by the time we'd driven the 15 miles there I was on the receptionist radar's for an X-ray of the painful arm. I'm glowing a bit now as she did about 6 X-rays of the whole arm, but Hey Ho, Silver, what the heck?!!

And he promised to make the face US an urgent one, so I hope to hear about that asap.

Not a bad haul for a Monday morning! The X-ray dept. was full of people who must have fallen off horses, each other's shoulders, or kerbstones at the weekend, so they took 4 of us over to A & E which was surprisingly not so busy (so what's going on there then?!!).

I agree with Amanda, Jasmine - any number of opinions can only be good - best and braces, as you say.

Lots of Love, Tigerlily xx