Post from Amanda disappeared ......?

Morning all

At around this time yesterday morning I popped onto the forum quickly whilst having my morning cuppa. I'm sure I read a post from Amanda where she was feeling really ropey and down. I didn't have time to reply at the time as I needed to get showered to go out, and Amanda deserved more than just a one liner. So when I logged back in later in the morning to reply properly and send Amanda some love and cyberhugs I couldn't find the post anywhere!  Am I losing it.....? Did I dream it ......?  I felt really upset imagining Amanda feeling so down and poorly and unsupported by us, and wished I'd replied immediately. So Amanda, if you did post - and I'm certain you did .....I think .....! - I hope you're feeling a bit better today, so sorry to have left you unsupported, sending you love and big cyberhugs!  And if you didn't post then sending the same anyway, and if the post is sitting there in the forum read and replied to then I am seriously losing the plot...!

Jasmine x

Hi Jasmine & All
Sorry for disappearing on you like that, I've had some pretty crappy stuff going on not connected with PTH problems and posted when I was feeling really low. I re-read it and decided you didn't deserve to listen to me whinge so I deleted it.
Crappy stuff still happening but I miss chatting to you guys and you always make me feel better so I'm back   
I will try to catch up with everything but if I've missed stuff I'm sorry.
My present situation is.......... Endo wrote and is still obsessed with FHH so before she will even think about anything else I have to have Genetic test, unfortunately I have to wait to be summonsed by Endo nurse for this !!!!!!! God knows how long that will take but if I haven't heard by mid week next week I'll be ringing secretary to remind them. I now have next Endo appt 11/9/14 so once blood test done I guess I just wait  
The only positive thing is when results in I hopefully will either get referred to FP or then the fun starts trying to convince them FHH is not asymptomatic and how the hell do I carry on.
I have read and re-read the section on parathyroid.com which says over and over again you can have an adenoma and low urine calcium, well I've proved that once already !
So back on with the rusty PTH armour, horse at the ready, loins girded (not sure how I do that but it sounds painful) and on with the battle my friends.  
I added a cat for good luck.
Amanda xxxx

Oh Amanda - cats are me, so here I am!

I am so sorry you have been going round in circles for so long with this - have you seen Jasmine's post where she tells that FP says that we had thought for so long that FHH is A-symptomatic but now new research has indicated that it might not be?

Is it not possible for you to arrange for your GP to refer you direct to FP for his view on your case? Even though I paid for the consult with him this week (and you could do the same for £250 or so), he told me to get myself referred to his Hammersmith NHS Clinic by my GP (not the endo, because I don't have one on side) so we could continue the investigations on the NHS. He has a whole endo team there he can call upon for more tests, etc.

Why not send all the info you have on your case to him (surgical.secretary@googlemail.com - Attn: Sophie, his secretary) - after all, he is the guy you would go to if you needed surgery. Tell him you're one of Macca's Mistakes (Jasmine's description not mine, but very apt) and that your next endo appointment is not until September (that is just soooo bad). I'm sure you will be able to see him even on the NHS before then for an initial consult and then you can let him do all the other FHH tests etc., and you won't have to wait another 2 months to see him after these have been done.

Even if your GP is not on side, I would still email him with your blood results/history etc and let him decide if he needs to see you or not. And it won't be "not", I'm sure. Ask Jasmine for her take on this, and I'm sure she'll give you good advice.

See my latest post about seeing FP where I encourage others on the forum (that means you, m'Dear!) to contact him direct, preferably with  GP referral, but if not, just contact him anyway yourself.

Let me know your thoughts on this, Amanda - Jasmine and I are trying to ensure that we all get to The Ritz for a champagne tea at the same time, and we really do not want you to miss it!!

Lots of Love from Tigerlily xxx

Hi Tigerlily
Thanks for your reply Xxxx
Yes I did see Jasmines post about FHH now being thought of as symptomatic, that is something I really don't want to consider ATM, it's too scary (my twin sister has just had her calcium checked as she had an overall check up and hers is 2.48 unadjusted)
I have emailed Endo for all my bloods and 24hr urine results as I haven't got most of theses from her, so as soon as I have these back I will contact FP for a private appt.
I know that my GP will not refer me without Endos go ahead as I have raised this with them recently and they are too scared to raise their heads above the parapet, to act on my side incase they upset a Consultant   
Guess I'm not that important !
So yet again I will be waiting on this Endo to get back to me with info, I seem to be doing this constantly since Dec 13.
Thanks for all your help and advice I really appreciate it ATM   
Does FP know that you know Jasmine, I'm wondering if after Linny, Jasmine, You and Me contacting him after dealings with MTK he might be wondering what's going on !!!!!!
Thanks again and I so do want to be at The Ritz with you I can just about taste the scones, are we having tea or champers ??? Or both   
I think that's all that keeping me going, hope you are having as much sunshine as we are. I shall be enjoying it even though it makes me hurt all over even more   
Love Amanda xxxx         

Hi Amanda

So glad that you're thinking of seeing FP - do just check the cost of a private consult first as I can't be sure of the cost until I get his bill!!! (I only thought I remembered a figure of £250 - but that would be worth being able to move forward.)

I would regard your twin sister's serum calcium at 2.48 as mildly high. It could just be one of her lowest readings within a range of higher ones over time, as that level is with me. Did she have PTH tested at the same time? Might be a good idea. If PTH is even mildly raised above 2 or 3, it would be "inappropriately" high, and would indicate a possible PTH problem (FP gave me the course on this on Thursday - I knew it was true from my research, but nice to have him confirm it, especially as no other medic I have met even seems to know about it .....).

I know what you mean about GP's not wishing to upset consultants - and you, the patient, not really mattering in amongst it all. That is just so shabby - but it is endemic in the NHS. They say that in the police they had "institutionalised racism" (Peter is ex Met), competition open (to use Lozza's phrase!)  to describe what you mention in the NHS: "institutionalised patient neglect so as not to upset consultants" or what?! Someone on here will be able to think of something pithier than that, I'm sure. Look what the NHS does to its own whistle-blowers - there have been a few careers ruined that way recently by insiders who have spoken out about neglect.

Oops, sorry, Amanda, rant over - I was just getting a bit upset on your behalf!

A further bit of info I only got this week:

I wanted copies of a visual fields test I had in the Eye Clinic in 2013. The consultant's secretary told me to contact someone in the Medical Records department of his hospital as they hold the key to all our medical records. I made an appointment to see her as I couldn't wait for her to send out by post the form that you need to fill in the get copies of your records. When I saw her yesterday she had with her copies of all the documentation relating to my eyesight at that hospital which she made available to me at no charge under the Data Protection Act - I just had to sign a form to say I had received it (and also confirm, without losing any of my rights, that I didn't want the info for legal action against the hospital!! Hmmmmm....)

I didn't know you could get copies of medical info this way!! Even me with all the darned research I do!  

Perhaps you could approach Medical Records at your hospital and ask them for the info you are waiting for since December? Just a thought and certainly worth a try. It's all on computer anyway so they will only need to print off the relevant pieces (best if you can give them a list of dates to look for etc) and won't have to wait for permission from the endo involved as a secretary would (and the endo would probably be on holiday anyway, and unavailable to ask  etc   etc).

It's become a post-op celebratory champagne tea at The Ritz now and everyone is invited! I was so taken with the designer shape of the new London Routemaster buses that we saw last week (silly cat, should get out more !!) that I'm thinking of hiring one to pick us all up so we don't have to drive and park. Competition also open for the wording for the banner that will go on its side!!!

Keep on keepin' on, m'Dear, and get thee to FP asap!

Lots of      ,  Love, Jasmine's green men     and Hugs        from
Tigerlily xxx

Hi Tigerlily 
Yes my sister did get PTH done but she can't remember exactly what it was she said it was under 2 but she doesn't want to bother her GP by contacting them again !!!!!! Humph !!!
If what you say FP would surely see my results Corrected calcium between 2.62-2.73 and PTH between 3.5-6.4 as significant ???
Even though I poss have lower end of urine calcium out put.????
I'm going to give Endo a chance to get info to me but if I haven't heard anything or got appt for blood test by Wed I'll be on the phone moaning.
I may also see if my local hospital can supply me with historical blood test results to see if anything about high calcium shows up there.
Bring on Tea at The Ritz and the Routemaster !!!!!
Thanks for your support and advice you are a star  
I couldn't find a star so I thought a Queen might do.
            
Love Amanda xxxx

Hi Amanda

Your sister's PTH of under 2 would be OK with her calcium, I would think.

Yes, absolutely, I think FP would be able to see that your Ca and PTH are not in the right relationship. And I assume your uncorrected serum Ca is even higher than your corrected? It's just my opinion, but maybe your calcium is currently staying in your blood making your blood calcium high and not being excreted in your urine. My current uncorrected serum calcium is 2.62 and my 24 hr urine Ca excretion was around 4 recently, whereas with about the same serum Ca it was 8 last year, so it must vary somewhat.

Bless you, my Dear. At 62 I probably am a bit of an old queen (in feline terms!) but I'll be dancing on the tables with you all at The Ritz, having first descended the Routemaster, if this mess ever gets totally sorted for all of us                 !!

Lots of Love, Tigerlily.

PS. Hope JASMINE will chip in here regarding your results as well.

Hi Tigerlily 
Yes my ucorrected calcium varies from 2.67-2.83 so it's not low.
You aren't an old Queen (feline or any other term) you are an amazing person who I shall be glad to boogie with at The Ritz. It's a long time since I've jumped on a moving Routemaster and fallen flat on my face in front of a crowed bus. I was 17 at the time and in a pencil skirt and stilettos   Oh the shame !!!!!
I promise not to do it this time, I'd probably break something, what with the osteopenia !!!!!!
Thanks T love A xxxx

Pencil skirt and stilettos are still fashionable in my book, Amanda, but we may have to cling onto each other for support!

Yes, dear - I can boogie - at the Ritz - da, da, da, daaaa !

Love n Hugs, T xxxx

He he he, yes they've come back in my 20yr old daughter wears exactly what I was wearing 30 yrs ago !!!!!!
Oooo I remember that one   
The Ritz doesn't know what's coming ha !!!!
Love Amanda xxxx 

I was never into stilettos and skirts, I'm a bit of an ageing hippy/political malcontent so it was always Levi's, cheesecloth shirts and Bob Dylan for me, and not much has changed except have you seen the price of Levi's in the UK?  

I'd probably, no definitely, break something if I even attempted high heels these days!  Are Doc Marten's acceptable footwear for the Ritz? I'll put a nice frock on .........  

Jasmine x

Hi Jasmine 
Yes I'm sure Doc Marten's are fine, I did have a bright red pair but they've long gone 
A xxxx

Well, Jasmine, get you the trendy young thing!

Nice frock plus Docs (plus biker jacket?) - perfecto!!

And that ----o reminds me that we'll have to ask FP-o to make a very short guest appearance before we get too sloshed. Perhaps he can drive himself back in the Routemaster!!

Lots of Love Tigerlily xx        

Sending you lots of love, hugs and support Amanda. We're all here for you and with Tigerlily in help and fun mode, you can't go wrong!

Tigerlily, you do make me laugh! I've never been to the Ritz, but I'd love to pop along and meet everyone! Jasmine, I bought several pairs of Levis last summer when we were in New York as they're so so cheap over there!

Love and hugs
Brigitte xx

That's great, Brigitte - so glad you've got the right gear for the Ritz occasion!!

We might all be 92 by the time we all get sorted (well, me anyways!) but we'll sure make it a great occasion! Gonna get Dr Aud on Skype so she doesn't miss out, if she can't make it, but I'm sure she'll try to get here somehow!!

Love and hugs from Tigerlily xx

I glad I'm not the only ageing jean wearing Bob Dylan loving hippy. Oh yes I seen the Beatles in 1964 at a concert in San Francisco, I was the one near the front row screaming.     

I spoke to a friend I hadn't seen for a while over the weekend. She asked me to explain how it felt to have PTH disease, this was my explanation.
You wake up after a very restless night, your body feels like you have run a marathon with no preparation, you feel hungover and dehydrated, despite not having a drink. You get in the shower and the water stings your skin.
You then spend the day (whether it's working or not) trying to remember what you are doing because your brain fog has taken over. Remembering to turn taps off, turn lights off, what the hell you went upstairs for.
When I'm working, I have to write every conversation down or the minute I'm off the phone it's gone. Typing and re typing things because I've transposed words or got figures wrong (doing the vat returns are hell!!!!)
Visiting the loo a Lot, trying not to fall over when my knee goes climbing stairs.
Trying not to feel spaced out and to concentrate when people are speaking to me.
By the afternoon not sitting down for too long because I will nod off.
Rubbing joints and muscles a lot, then sitting down in the evening after dinner and promptly falling asleep, dragging myself up to bed feeling crap..............
Then it all starts again.
Have I missed anything, like numerous blood tests, hospital visits etc.
Not every day is as bad but when you get a week of the above in full flow it takes a lot out of you.
She was really surprised and said she didn't realised it affected people that much !!!
Amanda xxxx

That is such a good description, Amanda!

I mentioned in an earlier post about us not looking ill so people thinking we are OK - most medics included.

You've just about said it all there - see if you can get it included in MdaK's e-book so that we can be sure he's giving a more balanced picture of the patient's problems!

Love from Tigerlily xxx

Good old M the K and his ebook  
Amanda xxxx

Yes Amanda, good description. I think we ought to start a new thread and all of us post a description of exactly how this wretched disease makes us feel and what it takes just to get through the day, then copy and paste all the posts into a document to send to our respective endos/surgeons/GPs - including Macca!

I had to go and see my idiot GP this morning to ask for an X-ray of my knee to check for pseudo gout (chondrocalcinosis). I wasn't having a good morning, my thought process was in a real muddle and I was struggling to remember and get the right words out. He'd received a letter from FP with an update on where we're at with it all and we were trying to have a discussion about what further tests I'm having and with whom and why, but I just couldn't remember stuff and kept losing myself half way through sentences, and he was finishing my sentences for me. It's the first time he's actually seen me this bad even though I've told him this happens a lot, and although I wouldn't normally wish it on myself I'm really glad it happened because I could see he was quite taken aback by this mumbling, confused shambles that he'd never seen before.  He was actually really kind and attentive for the first time ever and got really exasperated with FP, saying why the heck are they putting me through all this, repeating the same tests over and over when my levels never change, they're always abnormal and he couldn't see the point in going over it all again and again. I explained that I felt after having two surgeries now that have failed to cure me FP is just dotting the I's and crossing the T's and he said he could understand that but even so it just isn't fair on me.  I felt like he had properly heard me and 'seen' me for the first time.

So anyway, I've had my knee x rayed and Ca and PTH done again today, let's see what's, occurrin' .......

Jasmine x

That's a good result, Jasmine. We don't like to show ourselves at our worst, but sometimes we need to give them some idea of where we are with all of this. Great that your GP got upset for you about all the waiting with FP, but did he have any other ideas to offer himself?

Probably not - but he'll be "on side" for any other tests and stuff you feel you need in the meantime whilst waiting for the genetic test result, I'm sure.

Let us know what your recent blood results are, and hope the knee shows nothing that can't be fixed.

Love from Tigerlily xx

Hi Jasmine
I know it's awful when you get days of loss of concentration, thought process and being unable to string a sentence together but that was probably a blessing in disguise, at least the useless GP could actually see you when it's really kicked in and not just a snap shot of 5 mins in a day when you look and behave normally.
Glad you've had x-ray and bloods done again let's see what shows up.
Amanda xxxx