Appointment at the Hammersmith!

Hello Everyone

I was referred by fax by my GP to the Hammersmith 10 days ago and thought I was stuck in cyberspace as I hadn't heard anything, so called Mr Palazzo's secretary several times this week, and today she told me that an appointment had been made for me for 13 August!

It's a shame we have to be pushy patients. I could tell when I spoke to her this week that I was getting on her nerves calling and emailing, but if that's what is needed, then that's what we have to do, I suppose.

Just so pleased, I shall have to have a lie down!

Love and Cats to All from Tigerlily            xxxx

Tigerlily you you deserve a lie down, well done for getting that appointment, I bet you will be ticking off the days.
Love Amanda xxxx

I will, Amanda, I will.

And how about you? Any results back yet from the gucky glucose test?

Love Tigerlily xx  xx  xx  xx

Not a blooming thing. Nursey !!! Did say it could be up to 2 weeks so I'm leaving it until next week and then sending another email to Endo via a secretary who isn't hers because hers is on hols until 17th and Endo hasn't got a direct email address !!!!!!!!!! Arrrrrrrrrgh it's the 21st century for god sake. Either that or it's very convenient that she can't be directly contacted.
I haven't had reply from last email so I will attach that as well    
I'm waiting on these results before I can get info together to contact FP as I need to know the situation and whether the pit gland is a problem. Also/or the low thyroid hasn't been even considered yet by Endo. I have mentioned thyroid in my last email to her.
So as Limbo Land is quite grey a bit windy and looks like it's going to rain. I'm going to jolly well go and have my highlights done so I'm not grey and windy (well I'm not windy anyway) like the weather.
The only problem is it kills my neck at the hair wash sink !!!!!
I shall return like a new woman !!!!! Well at least my hair will look good the rest of me feels crap.          
I'm so excited for you with that appt   
Lots of love A xxxx

Thanks, Amanda - you go, girl, and get your highlights done; that'll cheer you up no end.
Know what you mean about the hair-wash sink, though - ooch!

I think I've decided now that I've got my appointment that I'll let the Hammersmith team have a look at the pit problem as well to keep it all "under one roof" so to speak. I can't imagine Addenbrookes coming back with an MRI appointment before then anyway, but if they do I'll go.

I don't really want anything else to cope with apart from having the pHPT adenoma removed, so I'm aiming in that direction first to see if its removal makes any difference to the symptoms.

I'll probably change my mind again soon, but that's the current plan!

You've only got to get through this week and the weekend (with really pretty hair!) and then you can start to kick ar-e again and get nearer to things being clarified.

Lots of Love (and strength) meantime from Tigerlily xxxx             

Hi Tigerlily and Amanda

Tigerlily

So pleased for you, its a shame its not the the same day as me, i will be there on the 12th  August! How far do you have to travel? 
I'm pretty close Richmond.


Good luck, i have decided to try and relax and give myself a break from chasing down appointments now, as the last  few months have been exhausting.


Amanda

I hope you get the result of your glucose test soon and yes keep at them, its horrible being in limbo land!

Take care both of you

Much love

Diana xx

Oooh Tigerlily, well done, that's only 5 weeks  In HPT World, that's nothing! I'm very pleased for you. The only thing that confused me (other than Amanda's emailing process  ) was the fact that there are two threads with appointments at the Hammersmith! I'm so slow!

Amanda, I hope your highlights go well! You could feel as bright and wonderful as those adverts on the telly where they swing their hair round in slow motion and look so happy! If I did that, I'd put my neck out even further, but hey ho  

Love and hugs
Brigitte xx

Hang on, forgot the cats!!                  

Brigitte I shall try to do the swinging thing but with the headache and bad neck I might just look like I'm having a funny turn and someone will call an ambulance.............hey that's an idea get into A&E and then let them deal with all my probs.
Maybe not I don't want to be resident there  
I may look fab with the grey covered but it's all a show there's a 99yr old living inside my body and brain, I even think that's an insult to some 99yr olds.  
Love n cats Amanda xxxx 

Bless you both - and thanks for the cats!!

Love from Tigerlily xxx     

Congratulations Tigerlily   One step closer to feeling better.  Getting the adenoma out will make you feel much better I am sure.  All of your other symptoms could be coming from the adenoma!

The 13th isn't too far off.   Isn't it so annoying that we have to keep  really  "asserting" ourselves again and again to get a response. 

We'll be waiting to hear how your appointment goes.  

Many happy cats coming your way!!       

xxx,  Nancy

Amanda,
      I know your hair appointment will give you a  much deserved lift.    

Hoping the pit gland is not a problem. 

I kind of have similar concerns.  

Keep us posted Amanda.

xxx,  Nancy

Hi Nancy 
Pit problems really are the pits !!!!  
Hair all highlighted and I'm trying to do the swooshy thing despite headache and bad neck.
Sometimes we just need to do something little to remind us that underneath all the PTH crap there is a Woman   
Love Amanda xxxx

Don't make your neck worse with the swooshy swing thing Amanda! I'm glad you're all highlighted and hope you feel better for it     

I'm glad you reminded me there is a woman underneath HPT because most of the time I feel like an ancient old crone! Take care of that woman, I need to go and find mine! 

Love 
Brigitte xx

Sounds as though you're feeling all "light-headed", Amanda - you go, girl!

What can you do, Brigitte, to pamper yourself a bit - sometimes just filing my nails into a nice shape does it for me, even without any nail varnish!

Thanks for the happy cats, Nancy! You're right - 13th will be here soon. I was amazed to get such a quick appointment - the day after Diana's. Even if it's only an initial meeting with the Hammersmith team, at least I shall feel that I'm being seen by the right people.

I'm trying not to think too much about the pituitary issue, even though the symptoms seem to stack up for it. I can only deal with one thing at a time really, and as you say I should feel some relief of symptoms from removal of the pHPT adenoma, so I'll plan to have that done first of all and hope everything else disappears!!

I hope things are settling down some for you now, Nancy, as well. Thanks for your kind thoughts.

Love from Tigerlily xxxx

Tigerlily, 
   I think it may all be coming from the adenoma.  I think you have had HPTH problems for some time.  I think that in itself can cause so many problems.  
     Looking at the picture of the man with the lump in his neck and what it did to his face makes me think that having this condition for a long time causes many many bone problems.

Keep us posted about your appointment on the 13th!!

Thinking of you,
xxx,  Nancy

Thanks, Nancy - that's so reassuring - I'll cling to the thought that it's all coming from the pHPT adenoma.
My face swelling has gone down somewhat now, so perhaps was a momentary thing. But if it hadn't happened and been so visible my GP would not have been able to refer me for the US at which the pHPT adenoma was first visualised. Strange how some things happen, isn't it?

I got a copy of the GP referral letter recently (for the first US that saw the adenoma as just 4 x 4mm, so end-on probably) and the GP had asked for an US of the face swelling and noted in the letter that I was also being investigated for pHPT, so would they please also include the neck area. That was a really inspired request from him! Without that having been added to the letter, the US would probably have only been of the face swelling.

When I got there, the US was conducted by the most experienced operator and he found the 4 x 4mm adenoma! If he hadn't found that, I wouldn't have demanded the US at Addenbrookes, which visualised the adenoma side-on and 2cm long.

I really must see that GP at my family doctor's practice and thank him for adding the neck area to the US instruction in that letter!

I think you are right, Nancy, and I've had the pHPT adenoma for a long time - I estimate maybe nearly 10 years. If my calcium and PTH had been any higher at an earlier point in all of this, I might be looking at an even worse scenario like more than one adenoma or hyperplasia by now. But thank goodness it's just the single adenoma with normo-calcemic pHPT, hopefully.

Yes, I'll certainly let you know how it goes on 13th August at the Hammersmith - only 4 weeks to go now!

Thanks for your kind thoughts.

Love from Tigerlily xx  xx 

Tigerlily,
      So glad this worked out the way that it did and the sonagrapher also scanned your neck!!
Glad your practitioner put things in motion.

I also agree with you about your symptoms coming from this.   Wow, 10 years.  I believe it though.  It seems like most people don't even report symptoms or at least many do not.   Certainly after 10 years there would have to be symptoms so no wonder you have had various problems.  

I was wondering how long I have had this problem  (still don't know exactly what it is--maybe men!?)  I had a scary thought.   About 15 years ago I had started a new job and I had to get up quite early and drive long distances.   For some reason I was hopping, kind of, out of bed.  Just wondering if this wasn't part of the not being able to sleep problem which I think may be so damaging because no rem sleep is happening.  It's just speculation.   

We'll be awaiting your message after the appointment!!         

Hi Nancy

That is a good thought about the sleeplessness. I know I always feel perkier in the summer months and tend to get up earlier anyway, but just lying awake at night these days is not doing me any good.

I have some sleep pills from the doctor for when it gets really bad and have taken one tonight - like you, though, I hate to have to take anything!

Love from Tigerlily xxxx