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

Endo doubts I've even had an adenoma removed

Page 2 of 3 Previous  1, 2, 3  Next

View previous topic View next topic Go down

Endo doubts I've even had an adenoma removed

Post by Amanda Lynne on Tue May 20, 2014 1:19 pm

First topic message reminder :

Just before I went to see GP Endo rang me. She says second 24 hr urine still showing lowish result (I didn't get level as I was not expecting phone call and was just leaving to go to GP) creatinine is normal. She said I think you have FHH not parathyroid disease, I suspect what you had removed wasn't a parathyroid adenoma at all. 
I'm keeping this short because I'm in a bit of a state ATM. I said yes it was surgeon confirmed this, she said she needed to see all of his notes to check this herself !!!!
I argued as many points as I could think of, being put on the spot like that I had nothing prepared but she said even if it had been a tumour I could have FHH as well. !!!
The out come is I have another 24 hr urine and creatinine test to do !!! She said it had gone up from first test but not enough and it was on the borderline of the FHH confirmation result. Then I suppose I will get told there's nothing wrong with me and to go away.
Saw GP she couldn't believe what had been said but didn't offer any support. I got test for ferritin, calcium & PTH I asked for these to see what a different hospital result would show. She thought headache could be high calcium of low ferritin related and gave me a muscle relaxant to take at night but apart from that no more help.
Well you can guess how I feel.
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: Endo doubts I've even had an adenoma removed

Post by Tigerlily on Wed May 21, 2014 3:27 pm

Hi Amanda

I can understand you not wanting anything more to do with him. He won't know that, but I haven't wanted much more to do with him myself since my consult with him! He's still quick to respond to emails though, which I suppose is something ....

(BTW I find the Chinese take-away plastic tray-type cartons useful - then into a jug and then into the bottle.)

No, it sounds as though your calcium is staying in your blood and keeping it high there. Mine is not so high in my blood now (about 2.45) but I'll bet it's quite high in the urine as a sort-of run-off for it. My kidneys are not as good as yours, so that would be logical, I would have thought.

And my PTH is now up to 12+ now so I hope Dr Levy will come up with some ideas tomorrow.

Hang on in there, Amanda, but I don't know how you have managed to do so - I would have gone off pop by now.

When all this is over, I hope we'll all be able to meet up (at the Hammersmith?) and have a good laugh together.

But Love for now from Tigerlily xxx

Tigerlily

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

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Amanda Lynne on Wed May 21, 2014 4:21 pm

I'm giving contacting him serious thought. scratch 
Thanks Lozza
Tigerlily I am wishing you so much luck with tomorrow I'll be keeping everything X'd ( good job I'm not doing 24 hr urine sample yet, that might be tricky)
I'd be worried with the Chinese take-away carton idea that there might be some special fried rice residue in there and Endo would diagnose me as a Prawn !!!!
 Stranger things have happened ( well they seem to be doing so in my life ATM)
Your PTH is v high hope you get sorted ASAP.
It would be great if we did all meet up it would also be strange because we've got to know each other so well over cyberspace, I wonder if we all look like we do in each other's minds. I think Hammersmith would never be the same again !!!!!
I do have to say I have 3 heads and a tail so don't be shocked. alien 
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: Endo doubts I've even had an adenoma removed

Post by Amanda Lynne on Wed May 21, 2014 4:47 pm

It's done I've emailed Mac the Knife.
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: Endo doubts I've even had an adenoma removed

Post by Tigerlily on Wed May 21, 2014 5:01 pm

Well done, Amanda - I'm sure he'll do what you ask and it might be the fastest way to get your endo on song.

Yes, I wonder if we will recognise each other, jasmine and lozza, and anyone else who'd like to come?!
Audrey and Nancy, Kathie and Rosieb might even fly in for the occasion!

Perhaps a celebratory Tea at The Ritz might be appropriate at some point!! Can you imagine the other tea-takers' faces when they hear what we are discussing?!!

Thanks for you good wishes for tomorrow - will report in from sunny Morecambe as we are going on there from Leicester.

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: Endo doubts I've even had an adenoma removed

Post by Lucycatnaps on Wed May 21, 2014 5:27 pm

Hi Amanda,
Ohh you have just made me really giggle with the prawn reference, it would not surprise me in the least what contaminants find their way into our samples when they get tested.  I did a little reading last night as although no-one has said anything to me, my urine calcium appears to be low too from my 24 hr test back in Feb.  I have found it hard to find a reference range for mmol, as most sites talk in mg of calcium.  However like you I never have been a great calcium consumer and probably less since all this started.  I also read that a low sodium diet and eostrogen can all reduce urine calcium as well and again, I do both.  I  would argue that although it can be a pointer to a diagnosis it cannot be totally relied on to be accurate as there are too many variables.  You are still getting symptoms so maybe it is the fact that with 3 heads Razz which is 12 parathyroid glands, give or take one, you are off the scale and it resets itself back to zero.  
I hope that your last surgeon replies quickly and can advise, hang in there and good luck with the next collection, can you eat sardines???
Hugs Sue
avatar
Lucycatnaps

Posts : 376
Join date : 2014-03-30
Location : Lincolnshire

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Amanda Lynne on Wed May 21, 2014 5:40 pm

I got reply I wish I hadn't bothered very abrupt. Said an adenoma removed pathology confirmed. Calcium went back up so you either have recurrent PTH or something else.
Calcium varied that is why you were sent to Endo and as they are having problem it confirms that we need to be careful before any further surgery.
Well that told me 
A x
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: Endo doubts I've even had an adenoma removed

Post by lozza on Wed May 21, 2014 6:01 pm

Hi Amanda,
Sorry is this the reply from Mac the Knife? in which case this is what you want confirm he did remove gland. I bet he is annoyed that endo is questioning removal.

You know there is something going on and he has said your case is complex, like many people, he also isn't ruling out parathyroid problem.

I know these people talk very harsh, I think that is the way they are.

you have some further info to pass on to your endo, you need to create doubt in their minds they will investigate further.

Tigerlily, tea at the Ritz, sounds a great idea, we could show scan pictures, bloods  test results and 24 hr urine samples ! might get chucked out, seriously I think this is a great idea.

All the best with appointment for everyone this week.

best wishes

Lozza

lozza

Posts : 149
Join date : 2014-04-07

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Lucycatnaps on Wed May 21, 2014 6:53 pm

Hi Amanda,
Ohh you have just made me really giggle with the prawn reference, it would not surprise me in the least what contaminants find their way into our samples when they get tested.  I did a little reading last night as although no-one has said anything to me, my urine calcium appears to be low too from my 24 hr test back in Feb.  I have found it hard to find a reference range for mmol, as most sites talk in mg of calcium.  However like you I never have been a great calcium consumer and probably less since all this started.  I also read that a low sodium diet and eostrogen can all reduce urine calcium as well and again, I do both.  I  would argue that although it can be a pointer to a diagnosis it cannot be totally relied on to be accurate as there are too many variables.  You are still getting symptoms so maybe it is the fact that with 3 heads Razz which is 12 parathyroid glands, give or take one, you are off the scale and it resets itself back to zero.  
I hope that your last surgeon replies quickly and can advise, hang in there and good luck with the next collection, can you eat sardines???
Hugs Sue
avatar
Lucycatnaps

Posts : 376
Join date : 2014-03-30
Location : Lincolnshire

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Amanda Lynne on Wed May 21, 2014 7:08 pm

Yes it was MTK's reply and he did confirm adenoma removed, I have already sent Endo copy of my surgery discharge notes which confirms this twice so far. !!!
Strangely enough prior to the possible 2nd adenoma he was very friendly and courteous !!!!
Yes I think the 3 heads is probably the problem.
Sardines give me acid reflux uck. 
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: Endo doubts I've even had an adenoma removed

Post by lozza on Wed May 21, 2014 7:20 pm

Hi Amanda,

I would send this to your endo as well as this states ( yet again) that he as a surgeon has done surgery and removed parathyroid. The is an upto date correspondence from him. You have also got "closure" from him , you needed  him to confirm -

also looks like your endo hasn't contacted him to confirm what he did.

hang in there, we are all going round and round with this.

lots of hugs

Lozza

lozza

Posts : 149
Join date : 2014-04-07

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Tigerlily on Wed May 21, 2014 7:48 pm

I agree with Lozza, Amanda. You needed his confirmation and you got it. He is a bit abrupt, but at least he answers his mails.

You and Jasmine make two former patients with the same ongoing problem. I can see that this would irk him, but it doesn't help you any, I know.

He seems to have a thing about calcium varying. He told me that mine was up and down all over the place and he was emphatic about being mega sure I didn't have HPT. I shall be emailing him as well if it turns out that I do have it.

At least all this will have shaken up your endo a bit, so you'll probably not have to wait for them to move now.

Love and GBH (great big hugs!) 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: Endo doubts I've even had an adenoma removed

Post by Jasmine2 on Wed May 21, 2014 8:20 pm

Only three heads and one tail Amanda? Pft - lightweight!  I have four heads all facing a different direction and snakes for hair, and you have to look at me through a mirror as if you make eye contact with me you'll be turned to stone from all the calcium particles I am radiating! But I'll be carrying a rolled up copy of the Endocrine Times so you can spot me in the Ritz!

Good luck Tigerlily and Sue for tomorrow, got nearly everything crossed for you but my two forked tails keep getting in the way of crossing my legs!

Amanda, I'm dying to know what response you get from M the K.  Chins up girl!

Jasmine x
avatar
Jasmine2

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

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Jasmine2 on Wed May 21, 2014 8:28 pm

Oops posted before seeing that you had already had a reply from Macca.  I found his replies to always be abrupt and to the point even when he still liked me, which I doubt he does now as I'm sure FP may have contacted him re my surgery with him, he said he might.  Haha, he's probably having PTSD thinking the Lyn/n/e's are rising up again.... affraid 

 lol! 

Jasmine x
avatar
Jasmine2

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

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Amanda Lynne on Wed May 21, 2014 9:00 pm

Hehehe you girls make me laugh. Wonder what a collection of Lyn/n/e's are called ? Herd, flock, brood, gang, clutch or could it be a murder (as in crows)
Good luck for all the appts.
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: Endo doubts I've even had an adenoma removed

Post by Tigerlily on Wed May 21, 2014 10:43 pm

Love that Endocrine Times bit, Jasmine! I needed a laugh today and I too feel a bit calcium-rich at the moment.
I feel as though I'm turning into the White Cliffs of Dover.

Hey ho - just chalk it up to HPT!!

All packed andeady to hit the teeming metropolis of Leicester tomorrow .

Good luck to everyone and have a good weekend break.

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: Endo doubts I've even had an adenoma removed

Post by Little Audrey on Thu May 22, 2014 12:30 am

Hi All,
One of the US Weebles checking in. Ah yes, Weebles were a favorite of my children. Know them well! Actually, since I save EVERYTHING, we still have some here. Now my granddaughters play with them.

Geez, Amanda, what the heck is going on with you?!!! I haven't been on here for a day, and so much has happened! I am so sorry you are going through so darned much! I still don't understand why it is so hard for these doctors to diagnose this $%&#$% disease! I diagnosed myself, and I did it all without a medical degree! Many or us have done so. Oh, this makes me SO angry! I do hope M the K sends you a nice reply and is willing to help you out.

Yes, I was going to ask what would happen if they found traces of soy sauce in your urine?!! Well, if they found something strange in there, maybe they would pay more attention to your case and get this all resolved! Maybe you should pour some in the jug! I would like to remind everyone that my urine calcium was never high, my alk phos was always normal, and everything else was always normal, except for my calcium and PTH, and sometimes THEY were normal too, although high/normal. I never had osteoporosis and never had kidney stones. Thank God Dr. Norman had enough experience and knowledge to finally diagnose me! Although, he did dismiss me the first time I contacted him, so I do know that terrible feeling of rejection and disappointment. I am so sorry you all are going through this crap!

Can't wait to hear what M the K has to say.

Hey, if you all decide to get together to celebrate all we've been through, I'm in! The only other country I've ever been in is Canada, but for you all I would find a way to come to the UK! What a time we would have!!

Audrey


Little Audrey

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

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Kathi209 on Thu May 22, 2014 1:33 am

Audrey was your 24 hour urine calcium over 200, I had one that was and the rest under 200mg. Just curious because I have a feeling my endo is going to bring that up when I see him Tuesday.

Kathi209

Posts : 329
Join date : 2014-03-31

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Kathi209 on Thu May 22, 2014 1:35 am

Oh Tigerlily good luck on your appointment.

Kathi209

Posts : 329
Join date : 2014-03-31

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Little Audrey on Thu May 22, 2014 1:57 am

I will have to check, Kathi. I can't even remember. It's been a while since I looked at those results. I will post them very soon for you.

And, yes, Tigerlily, good luck to you!!

Audrey

Little Audrey

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

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Amanda Lynne on Thu May 22, 2014 6:02 am

Hi Audrey
Yes he did reply I posted it a bit earlier, abrupt but confirmed adenoma removed.
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: Endo doubts I've even had an adenoma removed

Post by Tigerlily on Thu May 22, 2014 7:55 am

Thanks everyone, just packing the last bits for going to see Dr Levy and having the weekend in sunny (?) Morecambe.

The latest development is a rather tight and stiff skull/head/face/neck and the right lower side of my face seems swollen and puffy - that's the side where the spaces between my lower teeth have got larger of late. The dentist thought acromegaly, but my pituitary hormones are all quite low, so I'm thinking it might be a pituitary adenoma taking up more space than it should and pressing on various cranial nerves, as my eyesight is also deteriorating more than it was.

The worst case scenario would be HPT-jaw syndrome, where you've had HPT longer than you (or any of the deemed experts)actually thought and your jaw bone has become affected (yes, I had to look it up too!).

But at least I'm going to see Dr Levy today who I think from his profile is an expert in all these phenomena, so I hope he's ready for the detective work involved!

I'm still chuckling about our proposed meet-up at The Ritz and what I'm going to do with my copy of the Endocrine Times if I'm diagnosed and end up seeing any of my former deemed experts ever again!

I think it's only that that is keeping me going at the moment!

Back soonest with details of today's consult.

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: Endo doubts I've even had an adenoma removed

Post by Brigitte0 on Thu May 22, 2014 8:08 am

Good Grief Tigerlily, you really are going through the wars  Crying or Very sad Best of luck today and hope you get some decent and relevant answers.

Lots of love
Brigitte x
avatar
Brigitte0

Posts : 455
Join date : 2014-04-24
Age : 51
Location : Southampton, Hampshire

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Tigerlily on Thu May 22, 2014 8:11 am

Many thanks, Brigitte - I hope things are moving forward for you as well.

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: Endo doubts I've even had an adenoma removed

Post by Little Audrey on Thu May 22, 2014 10:33 am

That's great, Amanda! I don't know why I can't keep anything straight on here anymore. I'm going to have to start taking notes!

Audrey

Little Audrey

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

View user profile

Back to top Go down

Re: Endo doubts I've even had an adenoma removed

Post by Amanda Lynne on Thu May 22, 2014 11:24 am

Hi All
Latest bloods
Cal 2.65
Cal adj 2.62
PTH 4.6
Ferritin 96 which is good for me.
Calcium bit lower than last reading.
PTH bit higher it was 3.4 last time
Range for calcium 2.20-2.60
Range for PTH 1.6-7.2
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: Endo doubts I've even had an adenoma removed

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