Message from Tigerlily .....

Hi all

Tigerlily sends greetings from sunny Morecambe (NOT!); she's having problems getting on the forum so asked me to post a short message (which I have cut and paste from her email) following her appointment with Dr Levy on Thursday, and she will post further on Tuesday:

"The consult went well. He listened long and sympathetically to my long list of symptoms and even gave me an examination, blood pressure etc. All well - he says nothing malignant apparent and not FHH because of the high calcium excretion I reported.
 
From my one high calcium of 2.73 he diagnosed "mild" HPT. He is slotting me into his NHS clinic for an ultrasound with his main US man (name sounded like Stromboli) and said that if there was one there this chap would find it.
 
So, mission accomplished for the next step - much better to have an ultrasound done by someone expert at looking for them, rather than being granted a grudging one by the other local endo I saw who told me his colleagues would give him hell for putting me forward for an US "without showing any symptoms of pHPT".

Look forward to hearing more from Tigerlily after her weekend getaway!  

Jasmine x

Thanks Jasmine that's great news.
A xxxx

Well, I have been worrying about her because she hadn't posted anything regarding this appointment yet. This is a big relief! Thanks, Jasmine.

It does sound promising. Still don't understand the term "mild HPT" though. Really?!! I wonder if the doctors would still label it as mild if it were them suffering!!! If you have HPT, you have HPT, and you need surgery!!

Audrey

Yes Audrey, that was my line of thinking as well and when I read it I thought "Dr Levy, shame on you, I thought you were better than that..." at least that was my experience with him.  Still, at least he's taking Tigerlily seriously after all the c**p she's had to put up with from other medics, and looking after her like a good endo should do.

Jasmine x

I'm glad to hear Tigerlily had a fairly successful appointment this week then, since everyone (except me) who has had a consultation this week seems to have been messed around. Good luck for the ultrasound, Tigerlily. I suppose "mild" HPT is better than FHH anyway, but surely you've either got it or you haven't! But that doesn't seem to follow now does it, judging by all the recent adventures of a bunch of us seeing Endos? 

Thanks for passing on the the update, Jasmine. 

Love 
Brigitte x

I think they mean "mild" when levels are only mildly raised rather than sky high.
Both my Endo and surgeon said my levels were mildly raised but i still need surgery.

Yes Nelly, I'm in that situation myself, but there's definitely at least one adenoma and I was diagnosed with PHPT and told I needed surgery before the scans showed there was something abnormal: mild didn't come into the equation. What I mean, I suppose, is that there is no level playing field for everyone when they go to a consultation with an Endo since they all seem to have varying "standards" that have to be met before they consider further treatment.

Love
Brigitte x

Yes, I know they mean mild when the levels aren't really high, but if symptoms can be worse when levels aren't as high, I don't understand what is so mild about it! They need to stop using that term, and just call it hyperparathyroidism! That's like saying you're a little bit pregnant!!!

Audrey

  Audrey, where would we be (when things don't make sense) without humour?!

Love
Brigitte x

Jasmine,
     So glad to hear from Tigerlily through you and wonderful to hear that a good U sound person is going to be looking for pHPT.   I think a good technician and someone to read it is critical.
       Whatever was in my neck,  a 9 CM mass,  was never picked up on.    I will find out later this week what it was.  I do know that it is not malignant.

Nancy---sunny here in Michigan--

( We still have ICE on one of the Great Lakes       )

Brigitte and Audrey,
     Yes, I think we either have or or not.  It's like being pregnant.  No one can be a little pregnant.
I think I really grasp the statement made by Dr. Norman "it's the duration not the elevation" that causes all the problems.

      I never had very high calciums but the PTH kept going up and my bones are a wreck.

Nancy

https://www.facebook.com/122556171090901/photos/a.788819567797888.1073741841.122556171090901/788819587797886/?type=1#!/122556171090901/photos/a.788819567797888.1073741841.122556171090901/788819587797886/?type=1&theater

Sorry,  this is not parathyroid related. 

Can you believe we still have ice.

Nancy

Hi Nancy lovely to hear from you, wow that's a lot of ice !!!
Brilliant to hear that your horrid lump wasn't malignant that's a huge relief, hope they let you know soon what it was.
Love Amanda xxxx

Wow Nancy, that ice is amazing - I'd love to see it in real life.

Good to know your big lump wasn't malignant. Please let us know what it was once you find out.

It's been quite bright today in sunny Southampton, but there's a massive black cloud appearing, scaring it away!

Love
Brigitte x

Nancy,
That is such good news!  How is the recovery going?  I hope it's healing well and not so sore now.
Sue

Hi Amanda,
     Thank you.  I was not expecting cancer but until a report is in,  I could not be sure.

So good to hear from you.  I hope you are getting some answers.

I am looking forward, in a way, to talking to the surgeon.  It just kind of hit me yesterday that this tissue was 9 cm.   No wonder I could see it in the mirrow when I tilted my head back.  I could also feel it.  It's so bizarre. 

I kept thinking of what you said last summer, 
"what else could it be". 

Thinking of you, Amanda,

Nancy

Hi Sue,
     My recovery is going well.  The incision, which is somewhat large, has raised edges but I guess it's just part of the recovery process.  I don't have the real sick feeling that I had before surgery.  I just don't know where the blood chemistry levels are.   Just taking a small dose of D but no calcium.    Just eating calcium rich foods.

Nancy

Thanks for passing the message on Jasmine. I was getting worried that we hadn't heard from Tigerlily.  I have an appointment to see Dr Levy next Thursday so was anxious to hear how she got on. Glad to hear it was a positive step in the right direction, and fingers crossed I'll get a similar outcome. 

Kate Xx

It is sounding better for you Tigerlily, glad they are doing something for you.

Nancy good to hear that all was well with that neck mass.

Kathi,
    Thank you. 
I am hoping Tigerlily has good news to report to us.  I know her calcium and PTH levels have been up and I think do indicate HPTH disease.

Nancy

Sue,
    I just wanted to mention I do have some numbness near the incision and some drooping of the lip when I try to smile.       The surgeon said I would have some numbness.  I think the mass was so big he must have had to pull open the sides of the incision to get it out. 

      Just glad he was able to get it out. 
I can deal with the numbness.

Nancy

Well, Nancy, I still can't believe it took doctors and surgeons so long to finally help you out with that baseball you had in your neck, but I'm sure glad they did! So happy to hear it wasn't malignant! Can't wait to hear what it was. Glad you're healing nicely. Yes, I'm sure it is normal to have some rough edges and bumps for a while. As you probably remember I had that golf ball size lump at my incision site for several months. I also had 2 little bumps right on the incision, which I really couldn't imagine disappearing, but they eventually did. I'm just so happy you finally got rid of that thing!

Yes, I can believe there is still ice on the Great Lakes. This winter was the roughest winter I can ever remember here in Pittsburgh. I lost a few shrubs and plants outside that we've had here for 30 years! They just couldn't take those constant bitter temperatures of this winter. Our little pond froze over so badly, the ice was about 7 inches thick. I have a little electric de-icer ring that sits on the pond and keeps a hole thawed out so I can feed the fish and so they can get some oxygen all winter long. This winter, that thing didn't work at all! It was just too darned cold! I had to use a crow bar every day to break a hole in the ice so I could feed my fish. We even keep an electric heater on the bottom of the pond during the cold weather, but that didn't help either. We went out in our pool for the first time this year, and you can believe we were thrilled to finally be able to do that again!! This winter was brutal!!

Audrey

Hi Tigerlily,

so glad your appointment went well - sounds like a nice guy, who wants to help people.

Hi Nancy, hope you are doing well

best wishes to all
Lozza