wrong diagnosis ? calcium creatinine test accurate?

I have just found a previous clinic letter Saying my calcium creatinine ratio was elevated making fhh very unlikely. And my parents calcium levels were normal. 

However since then my dad has had a calcium of 2.58 locally 2.1 to 2.55
My endo said earlier it was normal in 2012 and that also makes fhh very unlikely. 
But I know one other endo thinks it is fhh. 

So while I am waiting again for my next appointment the worry is driving me mad.

I'm petrified of them asking for a genetic test.  Seing as my calcium creatinine ratio was elevated surely I don't have fhh?  

Then next few weeks are making my anxiety a lot higher.
Rachel xxx

Rachel there is no point in driving yourself crazy with worry over this, if they want a genetic blood test done then go for it, better to know one way or the other rather than have treatment that isn't right.

If they do decide on surgery you will possibly have a long wait anyway ( 7+ months for me ) so a bit longer for genetic results won't make too much of a difference.

Also try not to pin all your hopes on surgery being the "cure" as it often isn't, I can honestly say my op has not helped me in any way at all. 

Try to take a step back from the why's and what if's, see what they say then go from there

Hi Rachel
I totally agree with Nelly, if they offer you the test take it then if it isn't FHH you won't have to worry about that and can proceed down the PTH course. If it is FHH then obviously they have to rule out a PTH adenomas well but it maybe something else that is causing symptoms and while they are fannying around the FHH/PTH diagnosis they aren't looking at any other causes.
Try not to worry, Sue & I have it and it's a pain in the a**e not knowing what symptoms are, if any due to it or not but I'm now being investigated further for other causes of mine, so hopefully I'll get sorted in the end. If you have got FHH just ignoring it won't make it go away.
Love Amanda xxxx

Hi Rachel,

Also remember that most people with parathyroid problems have raised cortisol levels - ie stress hormone, so it's no wonder if you have moments of feeling overwhelmed and panicky - your body is reacting to the imbalance in chemicals going on. Don't worry about worrying! I'm one of most laid back people but since becoming ill I too get times when I can feel my stress levels becoming out of control which a terrifying feeling. Now I understand why it's happening, it's easier for me ignore and not let it become a vicious cycle of worrying about the worrying.

Standard advice to lower cortisol is all the usual stress reducing activties etc...exercise, warm baths, cup of tea etc (somewhat unsurprisingly identifying and removing a misbehaving adenoma doesn't normally make the list.)

I think from what you've said it's not FHH itself that scares you but the thought that if you get a positive genetic test, your doctors won't persist in finding the cause of your symptoms. I think we all are scared about being abandoned by our doctors for whatever reason....because they think it's psychosomatic, because they think it's caused by a vit D deficiency, because they think it's a genetic trait, because they are too busy trying to hit their cancer targets, because they simply have run out of ideas and give up.

Well, we can't give up. So we will continue to push them for help. Whatever happens in your next appointment you will keep fighting, you will keep posing the questions, requesting the tests, asking for help for as long as you feel unwell, until you get some answers. And if they don't know enough, you find someone who knows more. You will hit more roadblocks along the way and you'll no doubt have to pick yourself up off the floor a few more times, but your desire to get better is far stronger than anything they can throw in your way.

And we are all here to keep willing you on from the sidelines   

Lots of love,
Dee
xxxxx

Thank you all for your advice.  I think the biggest worry for me is one of the endocrinologists took a disliking to me. He said my vitamin d deficiency was caused by my tattoos and many other comments and he's the one who thinks I have ffh.  So if he wants to delay things futher he could request a genetic test even though my endo clearly stated she has ruled it out in me.
Unfortunately he works private with the surgeon and on the Nhs. 
So I feel I don't have a leg to stand on against him. And I'm petrifed. He can influence the decision of the surgeon in the joint clinic. 

This has added to my anxiety and I don't really want to go back. 
I never told anyone what he said to me as I know they would all tell each other and I would be labelled a nucience. My endo doesn't know although I want to tell her.

I just feel so stuck, but like everyone has said this road isn't easy and straightforward. 
My oestrogen levels are still really low even though my menstrual cycle has started again. 
I feel a lot better and clearer in the head since having normal calcium levels but plodding on through the days in the countdown to meeting the scary endo again is eating me up inside 

Rachel xxx

I just found a letter saying my calcium creatinine ratio was elevated.  With a low phosphate. 

Unfortunately at my next appointment I'm worried Mr M will be influenced by the other endo.  Although I know he has his own mind but they work together privately at the spire too. So plenty of time to talk about me.... thus makes me nervous 

Rachel xxx

Rachel you have the right to say you don't want to see this endo, presume its Mr A J.

Oh gosh how did you know ? Xx

I have no choice I guess as he runs the joint clinic  
he was so terribly insulting to me.
I want to email my endo and tell her but I'm scared to cause conflict 

Rachel x

I Dont think I should go back  

X

Nelly knows because clearly his rudeness is legendary.

I imagine his colleagues must realise he's a complete endiot too.

Tattoos causing vit D deficiency..seriously? Where on earth is his evidence for that? Clothing covers far more skin than even full sleeve tattoos. Does he think it's our fault for not being nudists? You really don't need a lot of skin unexposed esp. if you're pale to have normal vitamin D levels.

I agree with Nelly, I'd definitely request to see someone else and I don't think you should have to give any reason. If it were me I probably would say that he made me feel uncomfortable and I therefore do not wish to see him again. There's a GP at my practice (who's actually very nice) but who I won't see because he's a total muppet.

You do have the right as a patient to request someone else. If it is making you feel that you can't go back then it's clearly affecting you a lot. You are not the problem here - he clearly is. Sounds like talking to your friendly endo and letting her know how much this is stressing you out is a good way forward. 


Hugs,
Dee

Thanks Dee
I have been in tears over the whole situation. 
I have no way of avoiding him as he runs the joint clinic with the surgeon so I amy at a total loss.

My appointment is in a few weeks and I have to act now if I am to do anything about it 

or goto another hospital 

Rachel 
xxx

I'm imaging how I'd feel if I had to see the total endiot who discharged me last November again and it's not a nice feeling. I'd be pretty wound up to be sure.

In order to avoid him I think I would request seeing the surgeon alone or with another endocrinologist present because I just don't think I would be able to control myself if I had to face him again. Whilst this would obviously cause a fuss I don't see how else I could cope.

That said, I excel at fuss-kicking when required and I realise others find it much harder. Do you have someone who might act as an advocate on your behalf and play the bad cop?

Dee
x

My mum said she would come with me.
but there is a terrible feeling in my Mind he is the one putting doubt into the surgeons mind and trying to tell my endo her diagnosis isn't right. 
With out her there at my appointment I am doomed.
I have an appointment the with the surgeon on his own but they are going to cancel it because the joint clinic is the day before. So I need to act quick and stop faffing and say something. 
My endo is too nice to pass judgement on anyone or say anything bad about anyone so I doubt she would email me back if I told her my concerns.My only other option is to goto another hospital. 

But I don't think I can face this man I fear he is compromising my treatment and putting doubt into others minds 

Rachel xxx

Hurrah for mums.

Have they said that the surgeon appt relies on the outcome of the joint clinic appt? If not, have you thought of telling them you don't think you can attend the joint clinic that day and therefore can they not cancel the appointment the following day because you need to discuss things with the surgeon?

Dee

I don't have any knowledge of him but he is the only male endo at Spire so had to be him. 

Was he on his own last time you saw him ? If so he may be better with Mr M there. 

As this is such a problem I think you should talk to your endo and see if there is a way round it. Alternatively go to the appt and see what happens, you can always get up and walk out, I did when my endo was being a twat

Fair play to you Nelly ! I wish I had the guts to walk out instead of being a quivering mess.
I'm trying to find a way around it.
Dee that's a good idea apprently the second appointment doesn't depend on the outcome of the first but they have probably cancelled it already. 
Last joint clinic he wasn't there thankfully he was on holiday. 
The time when I met him he was on his own with me and really laid into me. I was so shocked  ! 

Rachel xx

I think you are quite justified in saying to your usual endo that you don't want to see this man again and could she make you an alternative appt.

Nelly

Thanks for the advice I think I'm going to have to pluck up the courage and say something before it's too late. 
Unfortunately he may have a really good relationship with Mr m and in worry about that too 
xx

Rachel, I am so sorry to hear about your experience with your doctor. It reminds me very much of an experience I had with my internist here in the US. She insisted I did NOT have HPT. At one appointment I took in some printed material that I had found on Dr. Norman's website and on other sites on the internet. I was not only desperate to get diagnosed, but also wanted to teach her about this disease, because she obviously did not understand it. When I went to hand her the printed pages I brought with me, she reached up her hand and motioned that she did not want to look at any of it. She laughed and said very emphatically, "You DON'T have hyperparathyroidism!" I left that appointment and cried all the way home. I felt scared, defeated, discouraged, and totally crushed. I felt that I was going to have to live with this disease for the rest of my life, because nobody was ever going to understand this or diagnose it!

I had also been trying to convince my endo and my PA for years, and neither one of them would diagnose me either. It was a very depressing period of my life.

I then contacted Dr. Norman, thinking surely he would take one look at my labs and diagnose me instantly. I was wrong. He too dismissed me, saying that of the 3 sets of labs I sent to him to view, it appeared my parathyroid glands were doing just as they should, by increasing when my calcium levels decreased and vice versa. I understood what he was saying, but it was quite apparent to me that all 3 of those sets of lab results had inappropriately high PTH levels for the calcium levels. At this time I was even more crushed and REALLY feeling defeated, but I would not give up!

I continued researching and getting more and more labwork. Two more years went by. I continued to try to get my PA and endo to diagnose me. I refused to see the internist ever again after she laughed in my face. I had no need for her!!

FINALLY, I got up the courage to email Dr. Norman again with 16 more sets of lab results for him to view. I held my breath waiting for his reply. I had heard that sometimes he could be rather sharp with people, and I was really afraid he was going to reply by telling me I was barking up the wrong tree and to move on. I was wrong. He sent me one of the most beautiful emails I have ever read!!! He finally diagnosed me!!!

My point is, no matter how badly doctors treat you, no matter how uneducated they are, no matter how rude they are, don't EVER let them make you feel you cannot or should not continue on your journey to your final goal of being well again!! It is not your fault they are idiots!!!!

March on and prove them all wrong!!!! I did, and it felt damned good!!!

Audrey

Hi Audrey 
I'm so pleased for you that you have a diagnosis. !! Finally what a relief. !!
So sorry about your appointment with the endo who treated you like that. There is no need to break people trust and put doubt into someone's. We know our own bodies ! 
A good Dr should remain impartial and take on board what ever a patient shows or asks without judging and be open to a patients worries and thoughts.
sorry you were treated this way. 
I have a diagnosis and I know I can go somewhere else. But I need to goto someone sympathetic and who doesn't make me quiver in my boots.

I hope you have since told your Dr of your diagnosis and how wrong she was ! 

Rachel xxx

Actually, Rachel, I have not seen that doctor since she laughed at me. The first thing I wanted to do after Dr. Norman diagnosed me, was to go see this woman to laugh in HER face, but as time went by, I decided I didn't really want to see her again. I know she is aware that she was wrong and how I felt about her behavior, because she works with my PA. I LOVE my PA. She is totally opposite of that internist. The PA is kind and VERY caring. She might not have believed I had HPT, and she told me I did not have HPT, but she continued to try to help me get to the bottom of it all. As I sat in my PA's office very emotional after my surgery, I told my PA that that internist really needs to learn how to listen to her patients, and she needs to learn how to respect her patients. My PA was very sympathetic. I know she must have told the internist of our conversation. I still see the PA every 2-3 months. I have never come face to face with that internist since that terrible appointment. I honestly don't know what I will do when that happens. Maybe I'll ask if she's diagnosed any hyperparathyroidism lately.

It makes a huge difference when you have a doctor who is sympathetic and actually cares. I do hope you find one!

Audrey