Message for Corina - new member - joining soon

Hi Corina

I hope you will "arrive" here soon!

Just realised I can't send you a PM here until you've joined!   Silly me!

But when you get here, please send me a private message to tell me you are here, will you?

Love from Tigerlily xx

Hi Tigerlily! I finally manged to log in from my phone! ️Xxx

Hi Corina

So glad you made it over here from the old forum! So glad!

I'm going to send you a private message on this forum just to update you on some matters. I hope that's OK with you. It will probably be tomorrow now as I'm in the middle of cooking dinner, but I promise I will be back to you.

Just keep an eye on the ribbon above that starts "Home" to check for my private message.

Have you heard from Andrew McLaren in the meantime about the further investigations he mentioned?

I'll be back here tomorrow.

Love from Tigerlily xxx

Of course it's ok!
He emailed me today saying I should receive a date for another sestambi scan and a CT on my neck and higher chest.
I emailed him asking some questions. I'm worried if I am actually going to be cured. Do some people not get cured?
He said the labs results of what he removed 3 weeks ago, show that it was consistent with a faulty gland. He removed that one because it was slightly bigger that the others. I don't know if he got to find the 4 of them, ontherwise, how is he going to realise which one to remove next time? He didn't mention the venous sample so I asume that would be after the scans.
I'll let you know what he says when he replies.
I just can't wait to be well! Hopefully soon!
Love, 
Corina xxx

Hi Corina

Quick reply on these points whilst I just review your posts with Simon on the other forum - can you ask your surgeon to email you a copy of the Lab Report? That would be a good starting point. Surgeons usually give patients a copy of this.

I hope to get back to you again soon today with a private message. Sorry to keep you waiting, but keep dropping in here this morning.

Love from Tigerlily xxx

PS Corina, where are you located in the UK, by the way?

Hi again, Corina

I've just read through your posts with Simon on the old forum and worked out where you are located.

Another thought I've had is:  could you get another blood test done of calcium/PTH/Vit D just in case your latest one
with the high calcium was some sort of error? I understand that you have a sympathetic GP who diagnosed you with
primary hyperparathyroidism in the first place, so perhaps if you called the surgery they could leave you out a blood
test form to collect, so you could have another test done today?

Back again soon - Love from Tigerlily xxx

Hi Corina and welcome to the group,

I agree with TL about a repeat test or two perhaps before going into scan mode. I had surgery 6 months ago and my calcium and PTH have jumped around since, it is well documented that levels can take a while to settle down and you are still very early days post op. I also felt so much worse post op and for many months, it all takes a long time, if at all.

Keep us posted on your progress,

Nelly

Hi Tigerlily! Hi Nelly!
I'm in Portishead, Bristol. The hospital I had the surgery is outside London. I have a blood test booked 21/05, will see if I can get one sooner.
Thanks for your posts! Although I'm sorry Nelly hat you felt bad for a while, it does give me hope that I might be cured already!
Have to go now but will be back soon!
Love, Corina xxx

Corina if you do end up needing a good surgeon nearer home Justin Morgan at Southmead is the man.

I'm near Glasto in Somerset !

Nelly

Good to know, thanks Nelly!
Oh! Think Glastonbury is not to cat from here!  Suddenly  HPT doesn't seem so rare anymore!

Xxx

No its not rare at all, just undiagnosed for a lot of people. Two of us at Admin HQ have it 

Nelly

Hi,

Thanks Tigerlily, Nelly and everybody who thought of me and tried to help me! I cant tell you how much I appreciate this!
I am waiting for Mr McLaren to reply and email I sent a couple of days ago. I asked him to explain me about my previous surgery and a couple of extra things. Think I asked too much because he usually replies straight away! I'll email him again asking a copy of my pathology once I hear from him.
Tigerlily, Nelly, are you cured? Is this  something that is usually cured? Sometimes I wory I can't be fixed! Hopefully I'm wrong!
Hope you are all well and have a nice weekend!
Love,
Corina xxx

Hi Corina

I don't think we can ever assume we are cured for good because nobody knows if it might start up again in the future. Because I have had previous thyroid surgery my surgeon had a difficult job checking any other paras I might have left, he had to give up after 4 hours so I have no idea if I have another dodgy one lurking somewhere, time will tell.

Most people seem to achieve a "cure" and live happily ever after but there are others who have ongoing problems and of course its these few who we see on the forums, some do need further surgery but the vast majority of people will be fine and getting on with life.

I would say its taken 5-6 months for me to recover and I still have symptoms which could be hpth and or thyroid. My surgeon was totally honest and said that surgery may not resolve any symptoms but a lower calcium was the aim of the op and anything else would be a bonus.

Hopefully your raised results are just a blip, as I said mine have jumped from hypo post surgery to almost hyper again and then back down again.
Good luck with it all, never easy when things don't go as planned 
Nelly

Hi Corina

Yes, I think we have had a few people on the forum who have been cured, and I agree with Nelly that it has taken me too 6 months from my surgery in December last year to be able to say that I feel 200% better.

I have thyroid issues as well which could be complicating things. Strangely enough I felt best about 3 months after surgery. But I can't say I feel bad now, just a bit weighed down with the low thyroid stuff which seems to have kicked in again.

So, yes, let's hope your raised calcium is just a temporary thing. You might want to have another Ca/PTH/Vit D test again in a week or so, if you can.

We'd be interested to learn what your pathology report says!

Look after yourself and have a good break from it all this weekend.

Love from Tigerlily xxx

Hi,

I'm seeing Mr Palazzo this Thursday afternoon. Will let you know how it goes.

Thanks again for your messages and the information you sent me. Sophie, the PA, was indeed very helpful.

It seems that quite often there are  issues with the thyroid as well as the parathyroid.

Hope you are doing welAl and have a good start of the week!

Love,
Corina xxx

Hi Corina

Glad to hear this!  Do let us know how you get on at the appointment.

Love Tigerlily xxx

Hello again,

Just came by to tell you about my appointment with Mr Palazzo.
Very impressed with him! Thanks again for the advice and letting me know about him!

Before going any further for more scans, he asked me to have a 24h urine test that I hadn't  been offered before. I'm sure you know better than me what is that one for. He said maybe I didn't need that surgery I've had.

Haven't heard anything from Me McLaren and don't think I will now. I guess if Mr Palazzo needed to ask him the pathology results, he couldn't refuse to send them to him. So I'll just leave it.

Now I have to make an appointment with an endocrinologist to have that test done and then send it to Mr Palazzo.

Hope you are all doing well and having a good weekend!

Love,
Corina xxx

You can do the test via your GP unless you have an unhelpful GP. 

Why does FP think your op might have been unnecessary ? 

Nelly

Hi Helly,

He said that if I had something called Familial hypocalciuric hypercalcaemia, it is not harmful to the body. It's something like not being able to get rid of the calcium, but not because of the parathyroid. So he wanted to rule that out before going on with other tests. Although, he did say that that condition wouldn't give me any symptoms neither. 

Will try to wait and see what happens. I guess you know how difficult it is just to wait without researching while you are not feeling well and want to find the reason!

Corina xxx

There are others on the forum going down the FHH route, the notion that it doesn't cause symptoms seems to be questionable.

Nelly

Hi Corina

Glad you had a good consult with FP. I think your GP could arrange the calcium/creatinine clearance test. Then, when
you have the results of that you could email them to FP. There is a cut-off point for this test that indicates whether
or not the genetic test for FHH will be necessary, so if you do this step-by-step you may be able to save some time.

The other problem will be finding a sympathetic endocrinologist. So many of them don't understand PTH disease.
Perhaps your GP might know of one with an interest in PTH matters?

I would suggest that you start by asking your GP to instruct the calcium/creatinine clearance test. Get the results of
that test and send them to FP. Then he will say whether or not the next step should be an FHH test. He will probably
say that it IS necessary, but in your present position (having had one operation already) it's probably best for him
(as the surgeon doing the next operation, perhaps) to be really certain of the situation.

Keep us updated as to how things progress.

Love from Tigerlily xxx

Hi Tigerlily,

Thought I had replied already but think it didn't go through.
 
Thanks again, anyway! I will mention that to my GP and see if he would do that test or can recommend me an endocrinologist.

Hopefully I will have some news soon! Will come by before that anyway!

Love,
Corina xxx

Great, Corina - will wait to hear how things go.

Love from Tigerlily xxx

Hi again,

Would you know a good silicone gel to recommend? Mr FP advised me to use one because he said my scar is hypertrophic? Thanks! Xxx