Endo doubts I've even had an adenoma removed

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

Oh Amanda no! Stupid endo woman! Don't have time to post much right now but just wanted to send love and hugs as I can really understand how you must be feeling - I'm dreading getting that bombshell myself this week from FP! Anyway, if after your next 24 hour urine and creatinine she still says the ratio is indicating FHH I would demand genetic testing to rule it in or out once and for all.  I find it highly amusing that she would question M the K's report in light of what happened to me - at least he admitted that he took out the wrong stuff!

Chin up Amanda, keep going - remember, courage isn't having the strength to keep going, it's keeping going when you haven't got the strength!  And you are one strong and courageous lady ......!

Jasmine x

Thank you Jasmine I did ask her about genetic testing but she knew nothing about it, said she had never heard of a case of FHH and would have to find out what it really meant !!!!  
I'm keeping going I don't have a choice.
Thank you for your support it does help. 

Love Amanda xxxx

Amanda, do you have copies of the letters Mack sent to your GP? If not, if you email him I'm sure he will send copies.  I know you can get them from your GP but in this instance I think he would be very interested, and probably very irritated, to know that the endo has openly doubted that he removed a PT adenoma. He might even be prepared to write to her personally with copies of the pathology report, that'll put her in her place!  Was she the endo who referred you to him for surgery? These people just have no concept of what we have to go through with this wretched disease, and just how devastating it is to have to face one set back after another! Outrageous......

Jasmine x

Hi Lozza
I actually have the discharge notes that say 1.5cm adenoma resected.
She should also have these as everything was sent to her. It was Endo who rang.
She said well you don't want to go through another operation if there's nothing wrong with you do you ? 
Arrrrrrrgh.
Jasmine she wasn't the original Endo I didn't want to go back to that one as she had trouble diagnosing me in first place thought menopause caused high PTH n calcium so I chose a hospital with a few Endos that looked like they knew what they were doing. Ho wrong could I be. I do have letters from Mac and I will be forwarding them to her plus discharge summary.
Love Amanda xxxx

Ok, this is getting very old! I just now typed a nice reply to Amanda's post here, hit "Send," and it totally disappeared, and like an idiot, I didn't save it first, so now it's just gone! I don't have time now to retype it. I need to get ready for my eye appointment. Amanda, please know I feel terrible about all of this, but eventually somebody will figure this out and help you! Stay strong!!   

Audrey

Dr 
Endocrinology Consultant
 
Dear Dr 
 
I write further to our telephone conversation of today’s date, thank you for contacting me to explain the situation.
I enclose all copies of communication between Andrew McLaren, myself and my GP, this includes the discharge note following my surgery to remove a 1.5cm parathyroid adenoma and a letter noting that pathology had confirmed this. It also includes the last set of blood results from Wycombe General on 9/8/13 showing.
Calcium 2.83 Corrected Calcium 2.79 PTH 5.87
Since then I have had the following results from blood tests at Mount Vernon.
7/10/13   Calcium 2.69 Corrected 2.67
25/11/13 Calcium 2.57 Corrected 2.55 PTH 4.4
17/2/14   Calcium 2.73 Corrected 2.67 PTH 3.3
 
When I receive the forms for the 24 hr urine and blood tests I will do them immediately and telephone your secretary to advise this has been done, as I have previously.
I understand that if FHH is suspected that a genetic test can be carried out to confirm this.
I do appreciate your comment regarding not having another operation if it is not necessary but I know that you will understand that as my calcium and PTH blood results are quite similar to pre operation levels and I had a 1.5cm adenoma removed by focused surgery, I’m very anxious that any further parathyroid adenomas that could possibly be causing the high calcium aren’t missed.
 
My pre surgery bloods were as follows.
My initial PTH was 9.4 but I don’t have date of this or the corresponding high calcium levels which resulted in me being asked to have PTH test.
2/5/12   Calcium corrected 2.65
8/5/12   Calcium corrected 2.53 PTH 11.5
25/5/12 Calcium corrected 2.77
29/5/12 Calcium corrected 2.67 PTH 4.1
16/7/12 Calcium corrected 2.62 PTH 3.9
31/8/12 Calcium corrected 2.67 PTH 4.3
 
Thank you for your continuing support in this matter.
 
Yours sincerely,

 This is a copy of the letter I have sent the endo along with all the paperwork I have, I don't know if this is too subtle but I think she might get the hint that I do not agree with her.
Let me know your thoughts.
Amanda xxxx

Good letter,
 just a thought, you might want to include the reference ranges as different hospital have different ranges. This is one of the problem I have had with blood done in York are very different reference ranges to Cambridge.

best wishes

Lozza

Good idea, the Wycombe range is the same as Watford but Mount Vernon calcium is high over 2.60, I'll do that.
Thanks
A xxxx

Little Audrey wrote:Ok, this is getting very old!   I just now typed a nice reply to Amanda's post here, hit "Send," and it totally disappeared, and like an idiot, I didn't save it first, so now it's just gone!     I don't have time now to retype it.  I need to get ready for my eye appointment.    Amanda, please know I feel terrible about all of this, but eventually somebody will figure this out and help you!    Stay strong!!     

Audrey

Hi Audrey

Until I hear back from the support folks on this, please can you try clicking "preview" then "send first instead of "send"?
I would like to know if this makes any difference with the disappearing replies.

I appreciate that this issue is really annoying and I am trying to get it sorted.

Thanks

Edwin

She's not a keeper

Hi Amanda,
Ohhh what a rotten blow she dealt you!  I cannot believe that she places so much reliance on the 24 hr urine test.  I did not think they could give a definitive diagnosis based on the outcome, will you get the actual results through the post?.  I also read that depending on how much calcium is in your diet, that this can have an impact on your results so they can be on the low side if you don't eat much. I can imagine how you must be feeling especially with all your symptoms recently, but take it easy, get some rest and tomorrow is another day, you will get through this!
A big cyber hug for you,
Sue

Hi Amanda,

I am confused, I don't know what FHH is. When you say you had an adenoma removed do you mean just the adenoma or did you have a parathyroid removed?  I'm just thinking of what my surgeon said to me before my op about checking the other parathyroids and removing any that had an adenoma on them.

Take care

Oh Amanda, I'm irate on your behalf! I can't offer any help but I can see that you're dealing with it all admirably by getting everything put down in writing so the bleeping Endo has all the relevant facts in hand. Surely she should have them already!!!! She must be useless at interpreting the facts and test results.

Anyway, big virtual hugs and oodles of support. You *are* strong: I'm just incensed that you have to fight so hard to get anywhere.

Lots of love
Brigitte xx

Hi Johnny, Sue, Rosie & Brigitte,
Johnny she's a something but I'm too much of a Lady to put it down on paper.
Sue I don't have much calcium in my diet a small amount of milk in tea but don't eat a lot of cheese, cream etc the odd yoghurt once a week and use an olive type spread on bread etc. Also I wonder if it depends on how big you are as to how much calcium you give out. I'm 5ft 4 and around 8-8/12 stone so reasonably small, would that make a difference, who knows.
Rosie FHH is familial hypocalciuric hypercalcemia it is a genetic condition that you are born with which runs in families and I think it's a faulty link which makes PTH gland send a signal to produce more calcium. It supposedly has no symptoms and apparently is diagnosed by low urine calcium.
I had a parathyroid and adenoma removed 24/4/2013 surgeon did not check other glands as only this was showing on scans and as it was 1.5cms he decided it must be what was causing high calcium and not any further adenomas.
Brigitte
I copied all this info and took it to my first meeting with Endo (registrar) and she's had everything since. This first meeting was 3/12/13 !!!!!!!
I'm so grateful for all the support you are sending my way, I must admit I've had a few tears today when I was on my own but tomorrow is another day. Mind you when I do the next 24 hr urine I fully intend to stuff myself with cheese, cream cakes and a whole load of gaviscon  
Keep getting knocked down like this I feel like a wheeble (if any of you remember them)
Love n hugs to you all
Amanda xxxx

Ah yes I remember them well!  We're all weebles here - we get knocked down but just keep bouncing back up again because that's all we can do!  Let yourself have a good old cry Amanda, tears are good for the soul, and yes tomorrow is another day! We're all right behind you fighting your corner with you - tough times need best friends!    

Love and hugs 

Jasmine x

I don't remember the weebles but I'm in Australia so hopefully can be forgiven   

I now sort of understand what FHH is and admit I have never heard of it.

I'm in a bit of a rush now as I have to go visit my friend who isn't too well

Yes Jasmine, (I would sing this but I'm tone deaf   ) "Weebles wobble but they don't fall down" and neither shall Amanda!! Go Amanda!   

Love
Brigitte x

Amanda
I know how you feel because I think I am going back down the FHH road myself, will know better after endo appointment next week. I know Simon told me one time to tell that endo to prove it. I know he had genetic testing and it ruled out Fhh for him. I might just do as Simon said tell endo to prove it, I almost did last year, but my ca/pth came back at 11.3 pth was 73 so all the scans began, he dropped the FHH, but I think it will be back on the table now that my pth wants to run in the 40ish range and 24 hour urine is in the middle of normal. Hang in there Amanda wishing you the best.   Kathi

Thank you all for your support.
Amanda xxxx

Hi Amanda

I'm so upset for you that this is happening - many cyber hugs back to you.

www.patient.co.uk on its HPT page shows the following:

In FHH:
Serum Phosphate is normal/low
Serum Alk Phos is normal
Urine Ca is low, that is less than 200mg/day
Urine Phosphorus is normal
PTH is high

And in HPT:
Serum Phosphate is low
Serum Alk Phos is normal or high
Urine Ca is high
Urine Phosphorus is high
PTH is high

Not sure if that helps, or not.

I would be tempted to involve Mack da K in this discussion and email him as Jasmine suggested asking him to confirm himself to your endo that he did take out a PTH adenoma, but I know not everyone would take that course of action!

I hope things pan out better for you very soon (oops, unintentional toilet pun - sorry!)

Love and Hugs from Tigerlily xx

PS Amanda

As I think Jasmine said recently, FHH seems to have taken over recently from Vitamin D deficiency as a favourite "hobby horse" of the medical establishment.

Because it's so rare, it seems as if they all want to be one of the first to diagnose it!!

Lots of Love Tigerlilly xx

Hi Tigerlily
I know endos testing 24 hr urine and creatinine plus calcium but not sure any thing else is being tested when its done I will ask for all results.
Unfortunately its cups n bottles and not pans   
I may be that one person !!!! 
However that doesn't explain the symptoms and the osteopenia plus its a coincidence if it is that, I've also had pth disease.
I don't know what to think really.
I'm in two minds as to whether to contact M the K, I didn't really want to have any more contact with him.
Hugs back to you too.
Amanda xxxx

Hi Amanda,

 the urine test is for a few things and with the bloods will be able to give a bigger picture.  Have a big think about contacting mac the knife, one on hand he could rule this out straight away  and if he send just an email to you, Thank you can decide whether to let your endo know or not.

It is also his reputation that your endo is questioning.....

best wishes

Lozza