Hyperparathyroid Forum
By logging-in to this Forum, you are agreeing to the Hyperparathyroid Forum Terms and conditions of Use http://hyperparathyroid.forumotion.co.uk/f5-hyperparathyroid-forum-terms-and-conditions-of-use

Promised phone call from Endo Registrar

Page 2 of 3 Previous  1, 2, 3  Next

View previous topic View next topic Go down

Promised phone call from Endo Registrar

Post by Amanda Lynne on Fri Apr 25, 2014 6:53 pm

First topic message reminder :

Well folks the promised phone call from the Registrar as per my appointment of yesterday's date to let me know if she'd decided if I had FHH, didn't happen arrrrrrgh why am I not surprised. 
I thought I had expressed how important I was for me to know ASAP so that I could take this further. I guess I will now have to try to get hold of her via a secretary on Monday.
Why can't anything progress as it should, wish I could just get a break and a bit of b****y help. Sad 
Fed up and cross.
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down


Re: Promised phone call from Endo Registrar

Post by Little Audrey on Sun Apr 27, 2014 1:23 pm

Ok, Amanda, I am ready now to think clearly and reply to your post here.  Smile 

It would seem as though you and I have a very similar problem. It seems as though we both have somewhat decreased PTH post-surgery, but our calcium has stayed about the same. In your case, though, you did have 1 post-op calcium that was much higher than pre-op, and your PTH at that time was pretty high too. Even though my calcium was up to 10.7 at 1 point before surgery, it was 10.2 immediately before surgery, and that's exactly where it is now! As mentioned previously on the forum, the only difference is that before surgery my PTH was 62.5, and now it is 31.7. I am still wondering if I too still have a parathyroid problem. I also mentioned earlier that when I put my latest levels of calcium 10.2 and PTH of 31.7 into the normogram, it now says HPT is less likely. Could it be wrong? I sure hope not, but if I need more surgery to correct this problem, all I need is a diagnosis, and I'm on my way! I just want to feel well again!!!

I am very interested to see how your case turns out, because, as I said, our cases seem to be very similar. My fingers are crossed that all works out for you!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Tigerlily on Sun Apr 27, 2014 5:50 pm

Reply to Jasmine and anyone else following this perambulation!

Apparently it is possible for a pituitary tumour to begin

"...by causing release of excess hormone and then later result in a deficiency of that hormone as normal pituitary cells are suppressed. This would cause early symptoms that would appear to be the opposite of later symptoms."

This is from:
http://endrocinesurgery.ucla.edu/patient and the section is
UCLA Endocrine Surgery, Pituitary Tumour

Ye gods - this could explain why my endo started out with a diagnosis of Hashimoto's for me, as my TSH got up to 10 before she would do anything about it.

Let me know when you have some thoughts on this, Jasmine - and contributions from everyone else also gratefully received!

Love Tigerlily xx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by lozza on Sun Apr 27, 2014 6:15 pm

Hi Tigerlily,
Thanks for info regarding Pituitary.

My original GP said that i would probably have an mri scan to rule out Pituitary problems as often Parathyroid/ calcium can be raised because of this. I haven't had a mri scan or as far as i know test for mens, but personally i would want to rule all of these things out, just in case.

i wish the Endocrine people would just go through why it takes so long and what they need to test for. I have just had my updated bloods done and with 3 months of vit d, this level should be ok, no idea what the calcium and PTH are doing! so not sure whether they will now start to test for other endocrine areas.

good luck with your appointment in ipswich.

best wishes to all

Lozza Very Happy

lozza

Posts : 149
Join date : 2014-04-07

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Tigerlily on Sun Apr 27, 2014 6:37 pm

Thanks, Lozza - I'm looking forward to the foot appointment for some strange reason! Probably because at least I get to talk to someone else about all of this and any other info anyone can contribute (as here on the forum) is so very useful.

The interesting thing about the Vitamin D is that Dr Norman says on his parathyroid.com pages on Vitamin D and Advanced Diagnosis that the body tries to reduce Vitamin D as a precautionary measure to ensure that when calcium is high not too much more is absorbed from the intestines (which is what Vitamin stimulates).

I did the 50,000 iu Vitamin D loading thingy twice but when I had finished taking it my Vitamin D levels dropped away again, which seems to support Dr Norman's thinking.

I take 2000 iu a day now to keep my Vitamin levels up, but if I didn't they would probably drop away again.

It's a difficult subject, all this, isn't it?!

Love Tigerlily xx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Linny on Mon Apr 28, 2014 9:53 am

Hi Tigerlilly
Boy have you been busy! You are a mine of great information. I just wanted to add that post surgery I am now taking 50000 IU vitamin D as my levels were very low and I have had awful bone/ muscle pain and parathesia. I have taken 4 doses so far and there has been a slight improvement. If you want good information re vitamin D then try Dr Holick. His book the vitamin D solution is a great source of D info. It states that recovery from prolonged Vitamin D deficiency will take 3/6 months even with the loading dose which I am taking. Specific symptoms are shin pain, throbbing bone pain, muscle weakness. He interestingly comments about Hyperparathyroid disease and he advocates keeping D levels up but my experience was that whilst I still had HPTH disease during the summer my calcium levels went up to 2.9. Interestingly it is also meant to help with depression.... We do all feel better in the sunshine!
I have two more high doses to take then a maintenance dose of 2000IU daily. I will keep you updated.
Love lynn  alien 
Ps I'm using green emoticon as that's how I look after I take the 50000 dose!!

Linny

Posts : 30
Join date : 2014-03-31

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Little Audrey on Mon Apr 28, 2014 11:27 am

Lynn, I am not so sure it's a good idea to be taking vitamin D if your calcium is high. When your calcium is high, your body will naturally lower your vitamin D to keep you from absorbing even more calcium. If you take vitamin D, there is a good probability that your calcium will rise even higher. My doctors prescribed 50,000 IU twice weekly for me too when my D was found to be low. I took it for about a month and then refused to take anymore. It as not helping anything.

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Amanda Lynne on Mon Apr 28, 2014 5:15 pm

Hi All
Guess what STILL NO PHONE CALL ! So I rang secretary and have left a message hopefully I will get a call back but I'm not holding my breath  Suspect 
Went to see surgeon re small inguinal hernia (no lump) just feel I have to say that incase you think I'm walking round with an unsightly bulge  affraid 
He said it is quite a small tear so if I'm happy to do nothing ATM he will sign me off and I can get referred when I am ready to have op done. His wait for referral is only a matter of weeks so that seems like the best idea.
Unless I do get approval for PTH surgery, I'm thinking I could have a double op, one doing one end and someone else doing the other. Mind you they might get mixed up and god knows what would happen then  Embarassed 
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Little Audrey on Mon Apr 28, 2014 5:28 pm

So sorry you still haven't received that long-awaited phone call, Amanda. I know how annoying that is!! I do hope they now return your call! However, I don't think it's a good idea to hold your breath either!

Glad the hernia doesn't need any repair work at the moment. One less thing to worry about, at least for now.

Yes, that could be rather bad if they would confuse the parathyroid and hernia ops! Yikes!! You might end up with a nice, tight neck, but have parts missing from below!!

Audrey


Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Tigerlily on Mon Apr 28, 2014 5:43 pm

That's just so frustrating about the call, Amanda - but I'm glad the hernia is not too serious and could be put on the back burner just while you get all the other bits sorted out.

Love Tigerlily xx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Linny on Mon Apr 28, 2014 6:34 pm

After reading your comment Audrey I wanted to clarify that I was definitely not advocating taking vitamin D pre surgery, just commenting on Dr Holicks take on the subject. As I said I'm sure it raised my calcium levels. 

Hope they get back to you soon Amanda
Take good care
Lynn  Very Happy

Linny

Posts : 30
Join date : 2014-03-31

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Little Audrey on Mon Apr 28, 2014 6:38 pm

I'm sorry, Lynn, I did misread your comment there! I mistakenly thought you said you were taking it pre-surgery! My bad!  Smile 

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Tigerlily on Mon Apr 28, 2014 7:07 pm

Thanks for the tip about Dr Holick, Lynn. He actually has a Question and Answer section on his website (www.drholick.com) in which he will answer questions! He said he thought I did have pHPT from all that I told him about my Vitamin D levels, etc.

He took a bit of time to reply, but it's great that we can actually reach these icons of research, isn't it?

Love Tigerlily xx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Jasmine2 on Mon Apr 28, 2014 7:28 pm

Wow that's impressive!   cheers 

Jasmine x
avatar
Jasmine2

Posts : 751
Join date : 2014-03-30
Location : Cambridgeshire UK

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Tigerlily on Mon Apr 28, 2014 8:11 pm

Well, I thought so, too, Jasmine - especially since I seemed to have a full set if I included Dr Norman's 90% certainty that I had pHPT!
But then he got a bit antsy about the adjusted calcium and ended by wishing me "the best" (after his rant ..) so I haven't been back to him again.
I'll give him a few months to calm down (goats and monkeys and all that ..) and if it turns out not to be a pituitary adenoma, then I'll lay it all before him again.
I think Audrey has the same experience that he dismissed her at one point and then did the op successfully on her a couple of years later.
What we have to go through, eh?
Good luck on Thursday - keep us posted - Love from Tigerlily xx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Little Audrey on Mon Apr 28, 2014 9:07 pm

Yes, you are right, Tigerlily, Dr. Norman did dismiss me early in 2011, a few months after all of my symptoms became unbearable. He told me I did not have HPT because my PTH increased as my calcium decreased, and it decreased when my calcium increased, which, as we all know, is exactly what it is supposed to do. However, 2 of those calcium levels were in the 10s, and 2 of the PTHs were 112 and 71. I was very disappointed, and it took me 2-3/4 more years before I had the courage to email him again!! This time he told me that it looked like my calcium had been in the 10s for 2 years, so I indeed did have HPT. He was a bit off there. My calcium had been in the 10s 90% of the time for 3 years, not 2. I guess he didn't want to admit he maybe should have diagnosed me 2-3/4 years earlier! I know it must be hard to diagnose when he only had 3 sets of lab results, but I don't know why he would have dismissed me like that when there was a good chance I did have the disease, and I had about 25 symptoms!!! Maybe if I do have to go back to see them all again (and I hope that's not the case, but it's not looking good!), I will mention this to him. Although, from the sound of the emails he has sent some of you, I'd better take a bodyguard with me.  affraid  Just kidding. I really do love the man.

Audrey


Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Amanda Lynne on Mon Apr 28, 2014 11:22 pm

Hi Tigerlilly
Going back to your suggestion about pituitary problems, when I had all the bloods done recently through Endo, they included a few that she said were testing for that and also adrenal problems, I think one was 9am cortisol, I can't remember the others I have it written down some where. When I had Endo appt the Registrar said all bloods came back well within normal parameters and that thyroid, pituitary and adrenal all ok so hopefully that rules that out even though I did have one low FT4 reading done previously, the one done after that was fine !!!
I have had 24 hr urine but she said it was ok, then she said it was low ish, I'm annoyed I didn't get result but I've asked (as usual) to be copied in on all correspondence to GP so it should all be in that.
I presume that's why she's questioning FHH but she was all over the place so I lost track of her thought process after a while.
I did ask if she knew what venous sampling was and her answer was oh it's something they do during the PTH op by clamping the PTH gland and checking if it's still giving off PTH hormone then if it is they chop them all out. affraid 
I did kind of loose faith after that statement and I just wanted to go home.
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Tigerlily on Tue Apr 29, 2014 10:24 am

Oh, god, Amanda - I can see why you lost faith!
It's so difficult to find someone to speak to who knows more than their area of interest (Medieval division of labour, an' all that ...!) and can put all the pieces together.
I don't have much hope that a guy who is triage-ing me towards surgery to remove these foot lumps is going to be any help discussing what might have caused them - but hey ho, we'll see how it goes.
I've had a reply back from Fausto Palazzo's secretary saying that it should not be a problem to cross back to the NHS for tests/treatment after paying for an initial consult, as long as I have a referral letter from m GP. I wasn't expecting to get a positive reply on that, so it has bucked me a up a bit for today.
Will report back later on foot/ankle inspection.
Love from the not-so-lonely-HPT-footsoldier, Tigerlily xx

Tigerlily

Posts : 1232
Join date : 2014-04-04
Age : 65
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Amanda Lynne on Tue Apr 29, 2014 10:31 am

Hi Tigerlilly
Good luck with your foot/ankle appt hope it goes well !!
Love Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Jasmine2 on Tue Apr 29, 2014 11:45 am

Yay Tigerlily, that's something positive to hang your hat on!  Did you ask what the wait time would be for an NHS appointment following GP referral?  Did you speak to his private sec or NHS? I wouldn't be surprised, given the reputation of Mr P and the endocrine service in general at the Hammersmith, if it was getting up close to the 18 weeks referral time, but you never know ..... you might be closer to the endgame than you thought! Sincerely hope so, you deserve it after all the legwork you've put in just to get to this stage ....

Jasmine x
avatar
Jasmine2

Posts : 751
Join date : 2014-03-30
Location : Cambridgeshire UK

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Amanda Lynne on Tue Apr 29, 2014 12:06 pm

Yes Tigerlilly you definitely deserve to get a positive result from the appt with Mr F P. 
Just out of interest what are your blood levels ATM (think I'm getting paranoid that mine are borderline and I won't get sorted) Xxxx
Amanda xxxx
Still no call from Endo dept grrrrrrrr. Having to see chiropractor today, really bad shoulders and neck, causing headaches. Crying or Very sad 
Good luck Jasmine with your appointment on Thurs I will have everything X'd for you.
Xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Amanda Lynne on Wed Apr 30, 2014 4:47 pm

Still no return call from Endo dept. Sad 
I will ring again tomorrow tbh I'm sick to death of the lot of them, if I could do it all myself I would, including the op !!!!!
A xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Jasmine2 on Wed Apr 30, 2014 5:24 pm

Oh Amanda, that is SO shabby!  I think if it were me I would put a phone call in to the PALS people to tell them you're at the end of your tether with being let down by this service and ask if they can intervene with a gentle push ....!  It's not as if you're being a pushy patient, you were actually promised a call ......again ......!

Jasmine x
avatar
Jasmine2

Posts : 751
Join date : 2014-03-30
Location : Cambridgeshire UK

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by lozza on Wed Apr 30, 2014 5:55 pm

Hi Amanda,

I can't believe they haven't been in contact, I was told in nov I was to have a mibi scan, I waited for appointment, got to Jan still hadn't heard, several phone calls to nuclear medicine, appointment hadn't gone though, spoke to consultant secretary, oh, she is away we will be in touch. Than got a letter, saying I am not having scan, This was 8 weeks later, caused a lot of stress.

If you get no joy with calling and trying to get through, etc. Which cost you money. I would put all of this in writing to Consultant- Or contact Pals etc.

best wishes

Lozza Very Happy

lozza

Posts : 149
Join date : 2014-04-07

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Amanda Lynne on Wed Apr 30, 2014 7:45 pm

Thanks Jasmine & Lozza I will try again and try for an email again if no joy I will contact PALs. It's just extra effort I can't spare ATM.
Thank you for your support.
Amanda xxxx
avatar
Amanda Lynne

Posts : 1080
Join date : 2014-03-30
Age : 54
Location : South East England

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Little Audrey on Wed Apr 30, 2014 7:56 pm

Give 'em #@!!, Amanda!!! I don't know what is wrong with these medical professionals! Some day they will be in our positions, and they will then understand how we all feel!! Good luck!

Audrey

Little Audrey

Posts : 1131
Join date : 2014-03-30
Age : 64

View user profile

Back to top Go down

Re: Promised phone call from Endo Registrar

Post by Sponsored content


Sponsored content


Back to top Go down

Page 2 of 3 Previous  1, 2, 3  Next

View previous topic View next topic Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum