Endo appt today ( Rainy to start with, sun appeared later ) I think?

Hi everyone,
The first thing I want to say is a huge thank you.  All the information I have gleaned and the support from you all has reaped benefits.  It empowered me to be able to fight my corner and have the knowledge to be able to counter the initial we will do more tests.   I guess a long wait time for this appointment gave me the opportunity to find out as much a possible.

So here goes,  it seems my blood calciums have been high normal or slightly elevated for a few years, and I am shocked that not one of them deemed it fit to pursue this.  The consultant is young and was very nice, he took a history, asked me lots of questions and then proceeded to give me reasons why my calcium could be elevated other than HPT and that I would need more tests.  He wants to check my Vitamin D levels and I told him even if it is low I will not supplement.  He then gave me the criteria for surgery, for which I do not qualify apart from having symptoms! I am over 50, no kidney stones etc. He has felt the lump on my neck and feels it should be biopsied as MRI was non specific on report.  I am a bit wary of having a needle stuck in it especially if it is the adenoma, I feel this could make removal harder.  I think I would rather have a Sestamibi first to see if it lights up.  Next I told him the symptoms were awful, and I want to be better, he explained that surgery may not cure the high calciums, so I countered that I understood that but would prefer it.  I felt a little scared when he was mentioning other causes of high calciums, but surely my PTH levels would be really low?.  Then he said he would refer me to ENT for surgical assessment, and so I requested that I be referred to Dr Palazzo at Hammersmith. He isn't quite sure how to do this and also asked if I have a sestamibi done here would they accept that or would they repeat anyway as not a good idea having it done twice. So, next step is dexa, review in 6 weeks but he has said there are no appts so it will be longer. Repeat bloods 2 weeks before appt and he will look into referring to Mr Palazzo.  So apart from me having an attack of the weeps half way through, it went well.  

I did ask re my low normal free T4 results and trialling some T3 but he says British Thyroid Association are trying to get it phased out as it is harder to control and with everything else going it, now is not the time to mess with my thyroid , which does make some sense.
I am a little scared now but this is positive progress, just have to believe that this is HPT and not something horrible.
Sue

Very glad the appointment went so well, Sue! It is such a great feeling to feel that your doctor actually cares and wants to help you. I wish more doctors realized how important that is to someone who is suffering terribly and losing hope. It would make such a big difference with our entire experience with this disease or any other disease!

I don't blame you for not wanting to have a biopsy if it can be helped. Maybe you'll be one of the lucky ones, and a tumor will be revealed with a scan. In some cases, I think it's good to do if there is no other choice, as in Nancy's case. Her doctors didn't seem to want to do anything else, and she really needed help. She has suffered terribly!

And, no, I wouldn't take the vitamin D either if your levels clearly indicate HPT. My doctors prescribed vitamin D for me when my PTH was first found to be high at 112. My calcium was only 9.8 at that time. I reluctantly took it for a few months, as my calcium rose. I finally told my doctors I wouldn't take it anymore. I am taking it now, as you know, in hopes of resolving my linger HPT symptoms post-op. I am very anxious to see how this will affect my calcium now. I can't afford to have it go any higher, but, hopefully, my normally functioning, remaining parathyroid glands will regulate the calcium now. If now, I'll know there's still a problem!

Again, so glad your appointment went so well! All or your hard work researching and learning will pay off in the end! Good job!

Audrey

Hi Sue

So glad to hear that on the whole it all went very well.

I was struck however by the consultant's comment about the British Thyroid Association trying to get T3 phased out. I take T3 only as thyroxine does not suit me and I would have a lot to say about that!

I note that the British Thyroid Association is composed of learned professors etc. If you check this out at the patient forum www.thyroid.org.uk they might have a different view of this T3 phase-out business.

It's not a criticism of you, Sue, just thought we should ensure that we have the facts on such an important subject. As you say, though, this is probably not the best time to make any major changes in meds as it might muddy the waters somewhat.

Keep an eye on Nancy's posts on the forum as she is having a biopsy this week on a similar lump in her neck.

In your position I would hope to be referred to Mr Palazzo pronto, and I wouldn't bank on him accepting sestamibi results from another hospital, but Jasmine might be able to advise here.

Rest up for a while, Sue, you've achieved a lot and are facing in the right direction, at least! A DEXA will be good as evidence of osteoporosis (or even just osteopenia) will strengthen your case.

Love from Tigerlily xx

Yes Tigerlily and Sue, Mr Palazzo really does like his own lab work and imaging done so I think he will request the full work up regardless of previous stuff done.  It took a bit of persuasion to get him to agree to my GP organising the 24 hour urine collection.  He grimaced and said "it's not ideal ...."; his preference was for me to come back into London on the train to drop off my flagon of wee for his own lab to do the testing!  I'm sure the other East Coast train passengers would have been absolutely delighted to know what I was hiding in my rucksack!  Anyway, that's done now ..... He did talk of me having to come back in to London for scans and things, so I'm pretty sure he will want to do all his own tests Sue.

Good luck with it all, one step closer, take a deep breathe in (but please let it go again slooooooowly, re the anxiety thing  .....) and keep going forward - be strong and well done for holding your nerve with the endo! 

Jasmine x

Hi Sue

Sounds positive, good luck with the upcoming tests   

Nelly

Thanks so much for all your replies, I know it is progress and one step further on the road to being well again.  It is the long waits that really up my anxiety levels, if someone could identify the lump on my anterior triangle of neck then I would not be anywhere near as panicky.  I guess the MRI result from January saying non specific but then the US said 18mm reactive lymph node ( this was just before high blood calciums were found ) so HPT was not on their radar, should ease my mind but it doesn't.  It has to be something!  The endo said yesterday, yes it feels lumpy.  I have read of ectopic adenomas in carotid sheath, sometimes it feels slightly smaller and maybe connected to submandibular salivary gland but it is a good inch below the actual gland under jaw.  I am due for post op review with orals at the end of May, the opening of salivary duct in floor of mouth has not solved the lump issue, but each time I ask what could the lump be he is non committal. 
I saw the rheumie straight after the endo appt,  this is the 5th rheumie in 8 years and last Nov was first appt with this one, was not impressed last Nov and yesterday took the biscuit!  I asked what was my calcium last November seeing as the copy letter to me said bone profile fine, lump not felt on neck but refer to ENT re eustachian tube disfunction so go back to GP and ask to refer.  His answer??.  Yes it was high, 2.7 but he felt this was due to a cuffed specimen!!!!!  So my reply was " You didn't feel it should be rechecked then ". He waffled on about endo's now looking after me, my ear cartilages have not flared so he will sit back, no follow up required.  My husbands reaction to him was " Indifference, incompetence and poor knowledge base.  I was told 8 years ago that Rheumatology would be my umbrella man who would keep a close eye on this rare condition and support when needed.  Luckily my form of RP has been mild so far but I do know when it rears it's head.  They cannot refer internally anymore with new rules so I am not too concerned about not seeing him again.
Felt really drained yesterday and weepy, mainly because my calciums have been up for a few years and never mentioned it for follow up, that is bad practise.
My oral mucosa is breaking out again, new white blisters so am debating the steroid mouthwash again for a few days, it is interesting that we have not had much sun recently so maybe not getting D for a week and I feel my D is low anyway may have set it off again, plus good old stress on top.  I am in a pickle and I feel for my husband as he can only take so much of " the pity party".  I guess on top of all this , is my mother needs more support which I am finding a struggle so I feel guilty and then..... My son lives in Dubai, he has just got engaged to a girl from the Phillipines, he has just said the wedding will probably be in January.  I am thrilled for him but I just don't know how I am going to get myself out there feeling like this.  I have kept most of my health stuff bottled but this morning I just let it all out when he rang, so now feel even more guilty for burdening him, didn't help being home alone today.  What a state to be in and I will probably regret writing this later, but if you met me in the street I can cover it well and smile.  I feel a little better just typing this and hope in a couple of hours this awful feeling will pass and I can go and sit in the garden.  I will get through this, he just put doubts in my mind yesterday that maybe it wasn't PTH, time will tell I guess.  Thanks for reading if you get this far, I know you all have your own problems, was just feeling sorry for myself.
Hugs to all Sue

Aww Sue, I wish I could just reach out and put my arms around you!  Consider yourself cyber hugged! There are times when we all go through these depths of despair and in all honesty you just have to let yourself go through it, let it all out to whoever will listen and stop worrying about being in poor me mode, let yourself just 'be' ..... anyone who matters will care, anyone who doesn't care doesn't matter!  No-one will worry about you burdening them because it isn't a burden, it's a privilege for those who love you to look after you and love you, them's the rules......!  When I was doing my counselling training many moons ago my tutor used to tell us how she was a great believer in having 'a rage'.  She would drive into the country and when in the middle of nowhere she would get out of her car, walk into the middle of a big field and scream, shout, f and blind, curse everyone who was p***ing her off and generally have a rage against the universe at the top of her voice, and she said it really helped her get it out.  I forgot about this until I was so low and in despair after I was written off by UK surgeons after my failed PT surgery last year (which is what prompted my campaign to get to Tampa), and my GP had just shrugged his shoulders in a "what can I do" kind of way, that I wanted to just stop the world and get off.  Then I remembered 'the rage'.  I was sat in my car in a big empty car park, only me left in it, pouring down with rain, not a soul in sight anywhere, and I went for it .... I screamed and shouted and swore and raged at the bum hand life had dealt me, then mid scream I caught sight in my wing mirror of a little old man pushing his bike across the car park in the lashing rain, and when he looked in the car at me having my rage he got on his bike and peddled like fury in the other direction.  Well that stopped me in my tracks and I burst out laughing, and laughed all the way home.  It did me the power of good and gave me the push I needed to get back in the saddle and start fighting again - which led me to Tampa.

Sorry to ramble on Sue, I guess what I'm trying to say is that even when we feel in the depths of despair and frustration, we find that extra bit of strength from somewhere to keep going - and you will too!

Take good care of yourself and keep coming back here to offload when you need to - you're amongst people who understand and CARE!

Love and hugs

Jasmine x

Hello Sue
I have just been bringing myself up to speed with your story. Wow! What a hard time you have been having and it has been going on for so long! I think you deserve a medal for perseverance and for surviving.
I think your comment about getting to the wedding in Dubai just says it all "I just don't know how I am going to get myself out there feeling like this".
Long term illness and particularly pre diagnosis parathyroid disease is really hard and you do end up trying to disguise how ill you feel. You can go out and appear perfectly ok but then go home and just collapse with tiredness. I too have kept the extent of how bad I have felt from my grown up children.
From reading your story I couldn't help thinking that you need to see a parathyroid surgeon URGENTLY. Not an ENT specialist. ENT is a particularly busy speciality you will wait forever and for what? the ENT specialist will probably say "what are you doing here"?
I would phone up Mr Palazzo's secretary (they all have one) and this is the easiest way to make contact with the consultant doctor you wish to see. Phone up switchboard at the hospital and ask to speak to her, you will be put through. Sometimes the secretary's share rooms and someone else may answer the phone. Ask to speak to his secretary even if you have to phone back. Ask if he has a waiting list to be seen, is he taking referrals etc. Then send a letter to the doctor you saw yesterday or speak to his secretary with your request for referral and with the details of where he is to send the referral letter to, don't leave it to him as it wont be his priority. Every step along the way you need to be phoning the consultants secretary asking has your referral been sent then phone the next secretary to ask if it has been received, how long until your appointment etc. You need to take charge and don't expect the hospital system to look after you or get it right. The NHS is overloaded and you have to push through it yourself to get to where you need to go!
My experience of seeing my parathyroid surgeon was that he carried out his own tests under optimum conditions thus there is probably no point in having any more testing until you see him. The blood for the parathyroid hormone level needs to be sent to the lab within a short time span. Also the calcium blood needs to be drawn carefully and without restriction.
An ultrasound scan to look for a parathyroid adenoma is very difficult and only an experienced radiologist can find them. The surgeon will have his own experienced radiologist who he uses for scanning parathyroids.
I wish you luck Sue, you just have to find strength from somewhere to see this through. Please keep posting so that we know how you are getting on. Sending cyber hugs!
maggie2

Tigerlily wrote:I was struck however by the consultant's comment about the British Thyroid Association trying to get T3 phased out. I take T3 only as thyroxine does not suit me and I would have a lot to say about that!

I note that the British Thyroid Association is composed of learned professors etc. If you check this out at the patient forum www.thyroid.org.uk they might have a different view of this T3 phase-out business.

From what I could see on the BTA website, their negative attitude to T3 and natural dessicated thyroid is inexplicable and it is not surprising that so many doctors still believe that synthetic thyroid hormone (T4/Levothyroxine) is the one and only answer to hypothyroidism.
It also seems that they have been very selective with their information to support their blinkered view of things as they have not included studies that support the benefits of T3 or NDT for some patients.

As I discovered, it is down to us patients to educate our GPs with more balanced information.
In my case, I achieved this with simple logic:- my blood results showed that I had very poor conversion of T4 to T3, so it was obvious that I needed to take T3.

Of course, if docs believe what the BTA say, then they will not even test for T3 levels, as they only need to know TSH levels in order to decide how much levothyroxine (if any) to prescribe, regardless of symptoms.

Rant over

Edwin

Hi Sue I've only just caught the end of your posts and I feel terribly sorry for you, I have been exactly where you are emotionally a few times over my PTH journey, I think many of us have.
I too have kept a lot of my problems away from my children although they are 20 & 25 I do not want to stress them and make them worry.
Rant as much as you like we are happy to help and know you will return that when we need your help.
I have only just got back on the forum as these awful headaches are made worse by using a screen.
Jasmine you made me laugh so much, you must stop scaring old men in car parks.  
Love Amanda xxxx

Ditto to everything that Maggie2 says, Sue. You must have tremendous reserves of strength and tenacity to have come this far over such a long time.

I've not been diagnosed myself yet, but have a taken medical degree with Dr Google over the past 2-3 years to try and get a handle on why I feel as I do - I feel just like you, in fact, absolutely shattered by the smallest exertion.

I have also realised that what I thought was being a "pushy patient" is really just what you have to do/be to get the best for yourself out of the NHS at the moment. Don't be ground down by the raised eyebrows and not-you-again-looks that you get from GP receptionists, or the glazing over of the eyes you are treated to by consultants or registrars who have neither the inclination nor the time to look into your case as thoroughly as they should, bearing in mind the Hippocratic Oath of at least doing no harm. All the waiting and hanging around for tests, decisions and diagnoses does a lot more harm than good, in my view.

You have to "project manage" the whole thing yourself, as your GP is probably not up to it, and there is no NHS pathway for joined-up-thinking and putting-the-whole-picture-together. Each specialist has their own specialty and basically they just report what they see within it and seem to wish to comment on it as little as possible.

"You have a lot of café au lait spots on your arms and trunk, Tigerlily? Oh, we call that idiopathic hypERmelanosis.

Next please! 

What? Haven't you gone yet?

Oh, you say you have white vitiligo spots over the same body areas as well?
Oh, we call that idiopathic hyPOmelanosis.

Next please!

Are you still here, Tigerlily? What now? Your tongue is too big for your mouth?
We call that macroglossia.

So be a good patient patient and move along there now.

Next please!"

My father died of septicaemia due to non-joined-up-thinking whilst being investigated for myelofibrosis, which is a strong enough prompt not to let the same thing happen to myself or people I care about.

I would take Maggie2's advice, Sue, (as I am doing) and get yourself referred either to an endocrine surgeon specialising in HPT/endo disorders, like Fausto Palazzo, or to a specialist endocrinologist like Dr Miles Levy at Spire Leicester or Leicester Royal Infirmary, who can give you a specialist diagnosis and then refer you to Fausto Palazzo or someone similar. Jasmine has already blazed this trail for us.

I shall be seeing Dr Levy myself on 22nd May (private consult to get me there fast - about £150 - and then I'll ask to be referred back into the NHS system for any tests or treatment deemed necessary), so will report back as soon as I am able. Dr Levy's biog pages at Spire Leicester Hospital list all his specialties and they are very relevant to anyone with yours or my own symptoms. I'm looking at a possible pituitary disorder myself (as well as, or instead of, pHPT) and he has expertise in both areas (plus many other endo fields) so I'm glad to have had him recommended to me by Jasmine.

Give yourself some time to think about all this, Sue. Take some down time for a day or so. Then ask loads more questions on the forum, and let us know what you are considering, so we can perhaps help further.

Love meantime from Tigerlily xx

Tigerlily, I think I've missed something somewhere or else my stupid HPT foggy brain hasn't registered it but can you run it by me again what the significance is of cafe au lait spots and vitiligo patches, and in what context? I have both ......

Jasmine x

OMG, Jasmine - I've got loads, too.

I'll have to re-check to be sure, but I think it's a possible pituitary problem again, and I think they are also connected with either Addison's or Cushing's - the latter I think. Also, iron overload I think can also cause them.

I also read, in connection with the malignant melanoma I've already had, that you often develop vitiligo-type white spots afterwards, but that it's a good sign of tumour necrosis factor working overtime somehow to prevent it happening again. Sounds a bit simplistic, but I'm sure that was the principle.

I've read so much about this lately that I get confused with my foggy brain as it is, as well.

I'll let you know when I find the right references, but I got most of the info from www.patient.co.uk.

Love Tigerlily xx

Aww you really all are the best of the best,
I am feeling a bit more human tonight,  I know I just let it wind me up and then I have to let it out.  Jasmine, thank you for making me smile,   I can just imagine what was going through that old chaps mind and I will definitely give it a try, it sounds very therapeutic!  
Maggie2, Thanks for the information, I had kinda half way got to that conclusion this afternoon, so good advice and I will follow that up.  I did try ringing his secretary this afternoon but it was just the answer machine so will try again tomorrow. My endo did say he would refer me to him and wrote his name down but as you said I think it would be helpful to find the contact details for Mr Palazzo and ring his secretary with the info.
Hi Amanda, I am so sorry that the headaches are still grinding you down,  I think that mine are probably hormonal when they hit as in meno.
Tiger Lily,  you are having a real struggle as well and I wish you the very very best on the 22nd.  My son has a couple of patches of vitiligo on his lower leg and I  try and drum it into him to use sunscreen but I think he forgets at times.  If I remember rightly was it Yvette Fielding from Blue Peter?? ( UK kids tv programme ) who had many patches all over.
Edwin, How are you doing???  I do not know why they are so against T3, his explanation to me is that it can cause thyrotoxicosis and is harder to manage than T4.  It feels like knocking your head against a brick wall as they will not budge on this in my area.  
Well it is late and I need my bed, I promise I'll behave for at least a couple of days    It all got a bit much this week.
Sue

Sue just wanted to say I think you are headed in the right direction. I am in your shoes with high calcium and crazy pth numbers that want to trend in the 40ish range. Good luck to you.

Tigerlily Good luck to you also. keep us updated.

Sue I am so sorry you're going through such a lot. We do try and shield or loved ones from all of this, it's like a dam with everything building up behind until it breaks through. Women are supposed to be the touchy/feely sex but that often means we're good at carrying for others but rubbish at getting them to care for us. This forum is such a wonderful place to just let rip knowing that we all understand and all care as so many of us have been there.

And Jasmine, wow! I would *love* to have seen that, might trawl YouTube on the off chance he had a mobile with him:-)

Hello Sue
I'm glad you are feeling a bit better. Sometimes you just need to explode!
Just another bit of advice. As well as project managing your case and taking charge of your own health you need to be secretary as well! Don't assume that the referral letter from the referring doctor has actually reached the doctor you are going to see or that it contains relevant and complete information. I have been to an appointment where the consultant had no information about me, I think the referral letter had been sent to the wrong hospital!
I have made up a summary about my health which I keep on the computer and update it regularly. I print it out and take with me to appointments. A bit like a 'CV' but containing your health information. It needs to contain name, date of birth, address and telephone number, past medical history including any previous operations and illnesses, family medical history, current medications and allergies. Depending on what I am there for I maybe include a list of symptoms etc. I also take with me copies of blood test results, scan reports, x-rays etc. This can save a lot of time and also is a good reference when you cant remember stuff. Try to make it concise and not full of irrelevant stuff. The doctor does not have time to read a book!
Last year I obtained copies of all my medical records from my GP surgery and the hospital. What struck me was how incomplete my health summary was in my records. This may be due to a poor summary process when my medical notes were transferred from paper to the computer system. A lot of health information in my records had not been shared with me but then years ago we just trusted that things were being done right. Now we have to be in charge of our own health and be proactive in managing our own health problems.
maggie2 x

Lucycatnaps wrote:Edwin, How are you doing???  I do not know why they are so against T3, his explanation to me is that it can cause thyrotoxicosis and is harder to manage than T4.  It feels like knocking your head against a brick wall as they will not budge on this in my area. 

I'm doing reasonably well, thank you.
Had my stress echo test last Tuesday and I'm awaiting the results.
I am cautiously optimistic, as I did not experience any discomfort when my heart-rate was increased to 150bpm, but it felt very strange.

I do not see why T3 is more difficult to manage, as long as the FT3 levels are monitored.
I agree that T3 is more powerful than T4 and there are differences of opinion over whether the factor is 3x, 4x or 5x.
As T3 is the active thyroid hormone, you'd think that it woud get more attention, but as long as doctors continue to believe that TSH is a thyroid hormone (which it isn't), things will never improve.

Edwin

Hi Sue,

This has been a lot to take in, you need a bit of "me time"  and some space, all of the rushing around and chasing the medical world up takes up far to much energy. You are nearly there with sorting all of this out.

best wishes

Lozza 

Sue,
     You are perservering, and to me that's not always an easy thing to do, but you have shown a lot of strength.  I know what you mean about traveling to Dubai to be there for the wedding.  My daughter and her family are in France and I thought that I had another year to feel better and get there.  Now the assignment has gotten changed and they are coming back in July.  If I don't go now I don't know how I will get over there.  
      You said lump.  Do you have a visible lump in your neck?   I just had one taken out but it has been a long journey and I don't know yet what type of tissue it is.  I believe and hope it is parathyroid becuase of my symtoms and becuase the pth was up to 144.   Like you, my calcium has not been super high.  It's just been high normal and like you the vit D has been down in spite of the fact that I have taken doses several times including 50,000unit footballs several times. 
     Keep going Sue.  You deserve to feel better.  With this disease a slightly elevated calcium doesn't always wave that warning flag, at the practioners but if the pth is up and the D is down then these  are definite indications of parathyroid disease.

Hi everyone,
I really appreciate all your good ideas and advice and I know I will find it incredibly useful.  I have come to the conclusion that I will have to push this all the way and not let it get me down.
I have tried telephoning Mr Palazzo's secretary  but it is always answer phone so tomorrow I will try again and also email.  It may be that she is on holiday or maybe they ring back after you leave a message.   I have decided to ask for a private appointment but I need to see if they then will treat me as NHS.  I am going for a Dexa scan next Thursday and my follow up endo appt is mid July.  Today the copy letter from my rheumie appt which was straight after my endo appointment arrrived and I honestly thought at first I had been sent another patients record.  I am glad that I asked to be copied in as if this is in my hospital notes then it is seriously wrong and needs correcting, as my husband said indifferent and incompetent.  The jist of it is....

She was earlier today reviewed by endo and has been referred to Addenbrookes for scan +/- biospy of lymph node.  Considering a diagnosis of PHPT blah blah.  It appears there is little to offer from my end as the RP is in sustained drug free remission.  

What?????? Where did Addenbrookes come from?????  And although endo did feel my neck and said  re neck lump he could do a FNA but I  wasn' t keen as was wondering if it could be the adenoma and so he then went  on to talk about Sestamibi.  At no point that I or dh rcall did he say I was having one done.   It is partly why I've  been feeling such a jittery wreck as this lump does worry me big time and since Tues been trying to find any info on ectopic carotid sheath adenomas and they are incredibly rare it seems.  I am wondering about another US neck as the first one was 18mm reactive lymph node and MRI says non specific but they were not looking for adenomas then.  I may ask when I go to the oral follow up at the end of May.  So tomorrow I will ring the endo secretary to see where exactly he is trying to send me and , what exactly he wrote in my notes which would lead the rheumie to write that letter.

Hi Nancy and I hope you are not feeling too sore and I hope you are given some peace of mind.  I had a look at the pic on the old forum and mine is in exactly the same area but I don't think it is as big.  It feels just like yours, I can feel the carotid pulse there and it does feel like the carotid rides around on top of the lump.  When the doc stand behind me to feel it each time, they seem to go to the side of it, it seems to show more if I turn my head to the right and upwards.  I do not think it has enlarged since it first appeared at the end of Oct.  It generally is non tender but recently has started aching a little at odd times, it may be linked to the submandibular gland under my jaw.  My husband says the hospital is not concerned but until I find out what it is there is always the doubt.
Take care, Sue

So when you spoke to endo and requested to go to see Mr.P, this information really sunk in, especially as he is based in London and Addenbrookes in Cambridge- 

Might be worth having a chat with your GP, and see what they say any hopefully help with referral to were you want to go. I think alot of GP also do phone calls, might be worth taking to receptionist and see what they can do for you.

Also as you are doing, see if you can get through to Mr.P , admin person.

It is your choice were you go and get treatment. I do think endo really need to outline tests etc, rather than you getting a letter, surely it is better to speak to us, while we are in the room.

They did a similar think to me, one minute told i needed mibi scan, than told 2 months later, no we are not doing the mini scan yet as this will be too early !!

At the moment the cause too much stress rather than sorting out the parathyroid stuff.

personally i am having tests this week, with see "mini endo" on friday and i will ask them to write letter to my GP and than i will go and speak to her as she may think a different hospital would be better for me.

best wishes

Lozza