Reply from FP

Evening All

I finally have my reply from FP, I've copied it below:

"I have chosen my words carefully - your diagnosis remains unproven rather than absent. The transient hypercalcaemia does raise the possibility but ultimately one has to have a watertight diagnosis to move forward. For this reason the best thing is have periodic serum calcium, PTH and Vit D levels and see where this takes you. The last thing that you want is an unnecessary intervention"


This is better news than expected! Very fair reply I think. I did try and explain it's hard for me to get my GP to monitor these as they think they are "normal" but he's very right. As a patient though, you just want to know, do I have a PTH Tumour or not!


Lucie xx

Lucie, I'm so pleased you had a reasonably optimistic reply from FP. The fact that in his expert opinion your diagnosis remains unproven rather than non existent should suggest to your doctors, particularly as you are so symptomatic, that they keep testing to get a consistent overview of your lab results over time. At least it's reassuring to know that, given a bit more evidence, FP will probably be accepting of a referral to the Hammersmith team in time. I think, once you have a few more results under your belt (show your GP FP's response and tell him/her that you want to follow this pathway to diagnosis given that FP is a PT expert. I persuaded my idiot GP to do monthly bloods) it might be £250 well spent to see him privately to get the ball rolling. Oh, and if your GP needs a bit more convincing that your results - ie the relationship between the Ca, PTH and Vit D - is not normal, print off the papers on normocalcaemic and normal PTH pHPT to take with you, indicating that you made reference to these conditions in your correspondence with FP. Can't hurt .....

Jasmine x

Hi Lucie 
It's pretty good news from FP he's definitely not dismissing you, it may just mean that you are at the start of quite a long journey to prove your diagnosis. I agree  with Jasmine show GP the email and ask for the regular testing and hopefully within 6 months you will have a more positive case to take forward in GP's opinion.
I'm sure I will still be here during that time fighting my case, if the pHPT hasn't finished me off by then   
Love Amanda xxxx

Thank you Jasmine & Amanda

Your replies are also optimistic!

Im pleased with his reply and I do fully understand that you need the right pathology results before any operation is carried out, there's so many on here with higher results that mine and you are still fighting.   I will take my email to the GP and hope they will continue the blood tests, if not I'll set the Forum into them   

It just feels good knowing that I haven't been imagining it all.

Xx

Go Lucie! I think FP's reply is encouraging and I can't think why your GP shouldn't take note of that and agree to continue with regular blood tests. You could be hanging around here for some time whilst you get more proof, but the results over a period of time would be beneficial as to how you proceed further. So I would definitely take it as good news

I do wonder in cases such as yours why your GP for instance doesn't appear to be too bothered about your symptoms in that you feel so ill but you've just got to carry on coping with life like normal. When in reality your life has changed and you need support just to carry on putting one foot in front of the other. I'm so glad you found the forum Lucie, as I can't imagine carrying on without it myself. It's such a comfort when you can guarantee that people understand how you feel and what you're saying, when it's difficult to explain to your nearest and dearest. 

Keep positive   

Love 
Brigitte xxx

That's great news, Lucie! It will support you over a few months of testing to get an idea of what Dr Norman described to me as "the climate and not just the weather".

When you show FP's email to your GP explain to him that you contacted FP as he is your preferred surgeon (if indeed he is) if it turns out that an adenoma needs removing, to show him that you contacted him for a reason and so your GP knows that it wasn't just a whim and that you have a link to someone with expert knowledge of HPT. That should show your GP how serious you are about this, and is probably why FP worded the letter as he did - i.e. to allow you to show it to your GP.

It is very difficult for endo surgeons to put their necks on the line (!!) with a diagnosis. AM diagnosed me almost as a malingering old bat (oops, little rant there - and must contact him soon to tell him the US result ...) but he did say something that was relevant and that was that without endo input it was difficult for him to diagnose "mild" cases of pHPT (although you either have it or you don't, is the view of most of us here on the forum) because he was "just the plumber".

Stay with us here on the forum, Lucie, and try and get regular blood tests from your GP. It won't be easy if they are not on side, but under the circumstances they should at least let you test Ca/PTH/Vit D on a monthly basis.

Try taking lots of printed information to your GP each time you go there - especially the stuff about normo-calcemic hyperparathyroidism (search the web - there's loads there - and we will provide you with links to what we have found already). Try and educate them to get them on side, but tread carefully as some don't like it.

Serum calcium should not vary by more than about 0.2 in the readings if the system is working correctly, as I understand it, which is why I persisted when my readings were described by AM as "all over the place" in conjunction with a high in the range PTH level. I've been diagnosed by FP (and a few others now) as having Normo-calcemic HPT and an adenoma showed up on US.

I had been trying to find a private company that had the necessary ultrasound wand and experience of using it but they are few and far between. I did however find one just after the NHS ultrasound had shown up the adenoma. In case anyone fancies investing about £100-150 in a private neck ultrasound (which is certainly what I would have done) I will post the details in a separate post.

Hang on in there, Lucie, FP wouldn't advise you wrongly in my view and that is a great reply he has sent you.
Ask us anything more that you need to and post your blood results when you get them back each time.

Love from Tigerlily xxxx

Hi Lucie

I totally agree with all the above comments.  It may just take a little longer than expected to get rid of the little blighter.  

I know exactly what you mean when you say about "not imagining the symptoms".  I`m fed up with GP`s thinking they are GOD and not listening to us. When I go to my GP with another symptom (which is related to PHPT) they say things like "low moods" and "health anxiety".  The health anxiety was from the other day.  When I asked what he meant he said well you have always been healthy until this year and perhaps the anxiety is the cause (this appointment was for my recent heart burn etc issues).  HELLO I felt like saying I have PHPT and heart burn and anxiety are classic symptoms of this disease.   I could not really pull myself together to answer wisely as I was feeling emotional (which always seems to happen at these appointments).  I thought if I cried he would just offer me some tablets to "pick me up".  My GP`s do not seem to be able to relate any of my symptoms to PHPT.  GP`s need to look at the bigger picture, we cant keep taking medication after medication to fix the parasites that cling to this disease.  Sorry off I go again...... shame I was not quick enough to answer him the other day, but is that not another parasite to this whole thing (brain fog).  

I am also so grateful for this site.  I`ve learnt so much and still got a lot to learn as well.  I think I will also be a long term user! I`m just dusting my boxing gloves off now for the next round of appointments / tests..... ding ding. 

Take care x

And I too agree with everyone else, Lucie. At least he didn't just dismiss you. I have been in that position, and it's not a good feeling! FP sounds like a very nice, caring person, and it's not easy to find a doctor like that. If you do have HPT, eventually the labs will prove it. I also agree that you should keep getting your levels tested regularly, so it can be caught as soon as possible. Good luck!!

By the way, Mel, if you should happen to wear out those boxing gloves, I've got some spare ones here I can lend you!   

Audrey

Thank you everyone and thank you TigerLily for the advice to email FP    

It definitely put my mind at ease with a lot of things, although I'm not looking forward to marching back down to the GP having to explain myself yet again only to be told "your levels are normal" "please fill in this Questionnaire on Depression & Anxiety" If only I could stuff that questionnaire in a place where the sun doesn't shine! 

Mel - I made need those boxing gloves ! 

Does anyone suggest how often I should get blood tests?


Lucie xx

I got Dr McLazy - aka the idiot GP - to agree to monthly bloods for calcium and PTH until I next see FP.

J x