living with primary hyperparathyroidism

Dear all,
Thank you for setting up this forum, i have been reading posts on old forum, and am pleased i can now post. I  have been seeing endocrine consultant for nearly a year. i first went to GP and had bloods done, calcium corrected at 2.57 ref range 2.2-2.6, PTH at 11.7 ref range up to 7.5. I had an ultrasound scan done which states could be thyroid nodule or intrathyroid parathyroid and only time will tell.

had 2 hospital appointment, more blood done, calcium towards high end of ref range and still high pth of 9.5, normal vit d of 78.

Lots more blood done- still no discussion about what i have, PTH came down and so did VIT D, calcium still high end of range, now been taking vit d tablets, as consultant requested.

Oh yes, lots of symptoms, bad mood swings, feeling sick, stomach problems, and lots of bone pain.

Due to go back to larger hospital in East anglia on may 23. This is 6 months from last appointment, currently feel like i am going round in circles, there was talk of doing nuclear medicine scan in nov 2013 from registrar, consultant said "not yet" , so still no confirmation of what is going on.

I really do want answers, but the hospital seem to just want to wait, i am 41 years old, Mum has graves disease. I have written to consultant about all of this, they said i must wait, they might refer me back to GP for further monitoring- i have asked what are we monitoring- but don't get anywhere.

no mention of surgery, 

thoughts most welcome.

best wishes

Lozza

Hi Lozza

Welcome to the forum, sorry you've not been able to join our group earlier but so glad that you're with us at last.

Oh my goodness, it makes me so angry and frustrated to hear, yet again, of someone else being subjected to the 'wait and see' approach, particularly as you are so symptomatic and suffering.  It's well known and quite common for blood levels to fluctuate with primary hyperparathyroidism, and to have a high normal calcium with a high PTH.  What are they waiting for ......?

Lozza, have you read all the information on Parathyroid.com?  It might help you to make a stronger case for getting a PHPT diagnosis - I'm assuming that the consultant hasn't officially diagnosed you?  Whereabouts in East Anglia do you live? I live in East Anglia too.  If you are unhappy with the treatment and management you are receiving from your current consultant you are within your rights to ask your GP to refer you to another endocrinologist for a second opinion, preferably one who is sympathetic to getting a diagnosis confirmed and referring for surgery.  You might have to travel a bit further afield to another hospital but it may be worth it in the long run, as I'm sure this is making you feel ill and miserable!

In the reference section of the forum there is a link to Dr Norman's normagram where you can key in your results and it will give you an indication of whether primary hyperparathyroidism is likely.

Keep posting Lozza, and let us know how you're getting on, and there will always be someone here to help, advise or offer support.

Jasmine x

Hello Lozza and welcome to the group,
I must admit I would feel like I had been given the run around too, I just cannot work our what the benefit is of waiting, it just seems such a lottery on who you see etc here in the UK as to what treatment is offered.  You are having to deal with some pretty rotten symptoms as well which makes fighting your corner even harder.
Keep your chin up through this and if nothing else you will get great support here.
Sue, not too far from you in Lincs

Hi lozza welcome to the gang.

The wait and see approach is not really the best for us that are suffering but do keep up the fight, you are in the right place for advice and support from our lovely members, fair bit of info in the reference section and more will be added as we come across bits that might be useful.

Sorry have to dash I can hear one of the dogs raiding the kitchen   

Take care

Nelly

Hello Iozza, I'm new here too, isn't the support on here fantastic? Like Sue I'm a yellowbelly so not far from you at all. It's so wrong that you are being made to wait and see, especially when you are so young. It didn't help that you don't know what you are waiting and seeing for!

On another point - wonder what Nelly's dogs managed to steal!

Half a banana loaf cake !!!!!

Had you already eaten half so that's what was left or did you manage to prise half out off the dog's mouth, in which case do you plan on eating what's left??

It was thankfully the last half so not to drastic, this is a dog who will eat anything edible or not, socks were his favourite when he was a puppy, now at 3years old he quite likes the covers of the Next catalogues, tasty   
Nelly

Hi Everyone,
Thanks for words of support- you kind of feel out in the wilderness !
I originally had bloods done in Yorkshire and requested to be treated at Addenbrookes as my parents are close to hospital.

My GP wasn't keen for me to go the Endocrine even with a PTH of 11.7, so the GP referral didn't help. I got copies of this letter and said " patient has early stages of PHPT and doesn't need treatment at this stage"

I was told by GP- The hospital will discharge you straight away- this hasn't happened and i am due to have my third hospital appointment in May. To confuse things further Cambridge can't see pictures of my ultrasound scan- only have written report and so far haven't gone through with a further scan- MIBI scan mentioned in nov- than told not having. 
So i felt i was just in a postcode lottery and moved GP to cambridge as i was relocating- new GP is supportive and agrees i do need answers. So i hope by hospital and GP communicating, at least they might decided what to do next.

In the mean time- you do suffer, sometimes i am fine, next day feel naff, i have also had a 6 months wait between hospital appointment, which is far to long, i am due to go for more bloods soon-  have been on vit d tablets for 3 months- the consultant wants vit d levels back to normal- i really hope this has happened.

thanks once again,

best wishes
Lozza 

Hi Lozza,
I think that changing your GP has been a positive move, at least your new doctor seems prepared to listen.  Maybe now you will start things moving along a bit more and yes I can relate how some days are better than others.
Sue

Early stage hyperparathyroidism?   That's as bad as MILD hyperparathyroidism.  Is there such a thing?   I wish all of our doctors had to deal with this $#!+!   I wonder how mild they would think it was then or if they would want to delay surgery because it was early stage?!      If you have the disease, you need surgery.   There is no need to wait.    I don't understand these doctors at all!

I know many times patients are stuck because the doctors refuse to take any action, but this is so darned sad!    Oh, this makes me so angry!    Why would they make us suffer and wait til our bones are totally destroyed before they would help us?    Grrrrrr.........  

Audrey

Welcome to the group Lozza. Seems we are all in the "Wait and See' line up, which Audrey states is just despicable!!!
I've never heard of 'Early Stage HPT??? I bet if we ran that by Dr Norman, he'd go off on another rant....and rightly so.

I'm also surprised that your GP hasn't clued in, that your Vit D levels are low because it's your body's way of compensating for the high calcium and PTH.
I just added a post about my nightmare yesterday with Vit D. from all I've read, it's bad news with this disease. I'm no doctor, nor am I saying this isn't right for you, but from Dr Norman's site, he doesn't recommend it at all. Perhaps you can go to his site and print off what Dr N has to say on the subject, and present that to your GP.
Also print off your levels calculated on Dr N's site and what he has to say about the correlation of levels and adenomas.

How many times do we all have to say it???
It doesn't matter how long they wait!!   Til we're blue in the face...HPT IS HPT!!!

I told my GP here in Canada...it's like waiting for a knitting needle to go further into my eye. Does it not mean anything that a needle is stuck in my eye in the first place???
Ugh!!! Frustrates me to no end....

Big hugs to you from across the pond and you're in the right place by the sounds of it.
Best,
Adele

Hi everyone,
thanks for all the support. I saw my new GP today, second time i have seen her, she said that she has now read through all my notes and wants me to go an have an ultrasound of my neck as last one done 1 year ago and found 6mm "thing", they are hoping to get this done before my next hospital appointment for may 23rd also to get bloods done in advance. I also have prescription for antisickness, as i feel very sick most of the time.

i know i have a long way to go with this, but at least, i hope an up to date scan will help to show what is going on.

i have been reading other members stories and see that tiredness is mentioned alot. i also have low b12 and have been having b12 injection every 12 weeks. i would advise anyone who is getting bloods done to ask to check b12 as well. Symptoms are: pins and needles is legs, tiredness, short of breathe,the sighs/ fogs , getting confused in general. there is quite a list and a fantastic group called pernicious anemia society- which has a lot of information. i just wanted to mention incase this helps anyone.

best wishes

Lozza 

Lozza    

There is a surgeon in Liverpool by the name of Mr Hardy lots of good reviews about him from UK folks. I am in the US so no first hand knowledge. But if you are near Liverpool I would try to see him. Good luck

Hi Lozza

It sounds as though your change of GP was a change for the best, which is good.

I'm in Sudbury, Suffolk, and I also attend Addenbrookes, but the thyroid and lipid clinics only.

May I ask if you are being seen at the Parathyroid Clinic? Possibly by Dr Helen Simpson?

Best of Wishes, Tigerlily.

Hi Tigerlily,

I am under Dr Simpson, but have only seen registrars so far, these have been different each time. Am due to go for my third appointment late may.

They only run 1 parathyroid clinic a month, this i think is on a tuesday, if consultant is away then it doesn't run and they wait till the next month. 

Because the parathyroid clinic is full, they have put be in general endocrine clinic on fridays- which runs every friday. They did have to ask for consultant approvable to do this.

who do you see ?

regards

Lozza 

Hi Lozza

Thanks for replying. I haven't even got to the Parathyroid Clinic yet! I've only just found out that there is one!

I see Dr Ruth Wood in the Endocrine Clinic for my low thyroid and she won't hear of anything to do with parathyroid problems in my case. I saw her registrar 2 weeks ago and she did at least notice that my calcium and PTH were both high in their ranges at the same time. When I told her I'd done a 24-hr urine calcium test via my GP (Dr Wood having refused me one as it "was not necessary") and the urine calcium was above the top of the range, she consulted with Dr Wood and they have asked me to repeat the test before my next appointment at the end of May.

I also see Dr Flynn in the Lipid Clinic for my high cholesterol (has been up to 10-11 in UK units) which seems to go along with low thyroid function. Dr Flynn did read all the paperwork I printed out for him from the US site parathyroid.com, and even plotted my calcium levels on Dr Norman's chart (see Vitamin D pages at wwww.parathyroid.com) but because my readings were borderline, he came down on the side of Vit D deficiency, rather than hyperparathyroidism.

I'm pleased though that you have at least been seen at the Parathyroid Clinic. May I ask who the elusive clinic consultant is? I believe there used to be a Mr George Wishart there who used to do endocrine surgery, but I think he only practices privately now. It did cross my mind that this would have left Addenbrookes in the lurch somewhat, as far as endocrine surgery is concerned, if he has not been replaced.

It's interesting that you mention that the parathyroid clinic is full! Somehow I'm not surprised! From what I've read, parathyroid patients are presenting much earlier in the disease process these days with what the experts are pleased to call "early hyperparathyroidism" and all the symptoms that you mention in your post, so we have probably caught them on the back foot as far as diagnosis is concerned, as there are so many of us!

Do keep posting, Lozza, to let us know your progress. We'll have to open an East Anglian section soon, as our number seems to be growing!

Best of Wishes
Tigerlily.

Hi Tigerlily,
  The two registrars i have seen are Dr Tan and Dr Kennedy, consultant who over sees is Dr. Simpson. Not sure who does surgery, as i haven't got this far with them. As far as i know Mr Wishart has moved to Anglia Ruskin as a medical advisor/ tutor, but not sure if he does parathyroid surgery still at Addenbrookes. There also seems to be someone from ENT called Mr Fish, who i believe also does the parathyroid surgery.

 i think the trouble is that they only do 1 parathyroid clinic a month, so no wonder they are busy. 

They do seem very keen on bloods tests and vit D, now on vit d supplements, i am due to go to third appointment may 23rd. My GP has decided to move things along and is booking an ultrasound for me , as last one done 1 year ago.

i imagine i am low priority as not seen consultant only registrars.
The confusing thing is that the registrars want you to have further imaging tests and than i rang up to ask about appointment, this went to consultant and i then received a letter saying i wasn't going to have the mibi scan- so talk about stressed out me !

sound like going to your GP was good idea, especially as your test result was high urine- i think it is a case of getting them to listen to us. 

the East Anglia branch sounds good idea !

best wishes

Lozza

Hi Lozza

Thanks so much for all this info on the system at Addenbrookes. I'm really grateful.

I don't think it means you are low priority in that you have only seen regstrars - they seem to refer back to the consultant and discuss each case. It's perhaps more that they regard your case as "early hyperparathyroidism" which as we all know is really not an option - either we have it or we don't.

Do have a look at the website www.parathyroid.com. This is where we get a lot of our information from, as they seem much more clued up on primary hyperparathyroidism in the US than we seem to be in the UK. And do look at the posts of Jasmine2 and littleaudrey, as they contain a lot of valuable hints and tips on the effects of this disorder.

I'm going to sit back this weekend and try and forget it all for a while!

Have a good Easter weekend yourself, and no doubt we'll continue to compare notes hopefully, as my next appointment at Addenbrookes is at the end of May as well.

Best of Wishes, Tigerlily.

Thanks Tigerlily and everyone for helpful advice.

i am due to get bloods done this week at hospital- and also hope i will get my ultrasound appointment soon. Last ultrasound was done a year ago and they found 6mm "thing" so am keen to see if it has got any bigger - has anyone had repeat ultrasound ? and if so did parathyroid " problem area" get bigger ?

i am completely new to hospital world, and am trying to get my head around the wait and see approach.

i had a nice Easter and actually managed to go to London for the day and went around charles dickens museum. But crumbs my legs are very sore today! oh well, it was nice to chill out away from the hospital stuff.

best wishes

Lozza  

ps- the smily face is because i am trying to keep positive with it all !

Good for you Lozza in trying to stay positive.  It's the best way to be as this horrible disease can so easily pull you down, but sometimes you just have to give in to it and allow yourself some 'poor me' moments.  But there are plenty of us on here Lozza who know exactly how it feels and who can pull you up again by the bootstraps when you're feeling down.  Oh and by the way, I'm just the same as you when I've felt good enough to enjoy a nice day out the next day my legs are SO stiff and painful it's unbelievable ..... 

Glad you had a nice Easter.....!  I did too although I'm going to suffer tomorrow for pottering around in the garden today haha....... but you have to keep on keeping on....  

Jasmine x

Hi Jasmine,

 good way of putting our condition, try and stay positive, have some good moments, some bad and a bit of "me time" to try and understand it all ! and thanks to everyone for helping during the "bad days" 


glad you had a good day in the Garden, so nice to see some sun and also help our vit d ! as Doctor orders!

best wishes

lozza 

Dear all,
 there has been a bit of a mix up regarding my ultrasound scan appointment- long story ! but i have now got an ultrasound appointment for my neck on thursday 15th May. This is good news and my next visit to Endocrine is may 23rd. I have also had more bloods done.

You never know i might get some answers soon.....

i can only live in hope!

best wishes

Lozza 

That's just great news, Lozza! So pleased for you. They must be taking you seriously - even if it's only the registrars! The last registrar I saw at Addenbrooke's was very thorough and is repeating my 24-hr urine calcium test before my next appointment on 29th May. I called them today to ask if I may see her again for consistency - and not the consultant!
Love Tigerlily xx

That is good news Lozza, sounds like you're starting to make some progress at last!

Tigerlily, was it today you saw the foot guy? How did it go?

Jasmine x