Another newbie in need of some advice

Hi all

Been following the forum for a few weeks now, and having had a week of going round in circles thought I would say hello and take the liberty of asking for some advice.

Around November went to see GP about a lump in my neck - having previously had goitre removed 17 years ago, and then cysts aspirated 7or 8 years ago i thought it would just be more of the same. Scan confirmed it is another cyst but my blood tests showed "borderline high" calcium levels. GP decided lump not big enough and calcium levels not high enough to do anything and told me to go back in 3 months.

Recently re-tested and Calcium still borderline high, but PTH also borderline high, so this time GP ordered a 24 Urine Calcium test. By this time I have of course googled it and learned about HPT and was amazed to find that there might actually be an explanation for the myriad of symptoms I have had for at least 5 years (all the usual, disturbed sleep, exhaustion, poor memory, tinnitus, thinning hair, thirst, irritability, numerous aches and pains etc etc etc) and which various GPs have all pretty much attributed to me being a hypochondriac, at least that is how they made me feel. 

Was no surprise to me therefore when the urine test results came back "abnormal" and GP advised he was referring me to see a specialist in Endocrinolgy. Thus began my trip around the NHS consultant merry go round. 

To cut a long story short, my local hospital in Northampton can't even tell me how long I will have to wait to get my first appointment to see a consultant, and the next two nearest hospitals have waiting time of up to 120 days. I really feel that my symptoms are getting worse particularly palpitations which I'm finding pretty worrying, so trying to arrange a private consultation. 

As a member of a Friendly Society I can claim up to £1500 for consultations and tests to get a diagnosis, but it has to be with a consultant who has an NHS post as well as private practice, as I will have to be referred back to NHS for any ongoing treatment or surgery. Advice from my GP and local hospital as to who to contact, and how, was look on the Internet! Very helpful.

After two days of trawling the net, and making umpteen phone calls I've come to the conclusion there is not an Endocrinologist actually in Northamptonshire or Milton Keynes area. 

BMI tell me that the nearest consultant they have is Neil Gittoes in Birmingham. The other possibility I have noted through this forum is Dr Miles Levy at the Spire Hospital in Leicester. 

Leicester is the easier option location wise, but if anyone thinks travelling further afield would be better I would be grateful for any insight? Would really appreciate any advice or information as to what to do next.

Thank you

Hi and welcome to the forum, yes I live in Cambridgeshire and I did the exact same thing as you at the start of my PHPT journey, I contacted BUPA for a list of endocrinologists within a certain radius, then did my homework and researched each of them to see which one felt right for me, and that turned out to be Dr Miles Levy.  I really like him, he confirmed my diagnosis with no messing around, and he's one of the progressive, forward thinking endos who is sympathetic to an early surgical intervention.  Plus, he's willing to refer you back into the NHS at his joint medical/surgical endocrine service at Leicester Royal Infirmary, which takes place on the third Wednesday of every month.  One of our forum members, Tigerlily, is also going to see him privately in a couple of weeks.  I think the key thing is to do the research and get a feel for the one who feels right for you.

Hope all goes well, keep us posted.

Jasmine x

Hi Jasmine

Thank you so much for your reply. I've been getting myself a bit stressed about having to sort this out myself so it's nice to talk to like minded people.
I have to say I did like Dr Levy's profile, and its good to hear that he is one of the more forward thinking consultants. it sounds like he might be my man! 
Will let you know how I get on.
Kate Xx

When looking for an endo, personal recommendation is best.  Otherwise, check their profiles to see if they specialise in Thyroid and/or Parathyroid. 
From what I have read in other forums, most endos seem to know a lot about diabetes and not very much about Thyroid/Parathyroid (about as little as most GPs).

Edwin

Hi Kate

Yes, I shall be seeing Jasmine's Dr Levy at Spire Leicester on 22nd May.
I hope you'll be able to get an appointment to see him soon, if you also choose to see him.

Tigerlily xx

Hi Tigerlilly

Yes booked my appointment today and seeing him on 29th May. Can't wait. 

Let me know how you get on.

Kate Xx

Grrrreat news, Kate! They don't hang around there, do they?

I'll post as soon as I can after my appointment on 22nd to let you know how it went.

Take care of yourself - Love Tigerlily xx

Haha hope poor old Miles doesn't get killed in the parathyroid rush!  I'm sure he'll cope ..... and it won't do his ego any harm .....!  Not that he actually seems to have one ..... Wonder if he'll make the connection between us all? I did tell him about our wonderful PT patient forum - he's quite in favour of it.....

Jasmine x

Hi Edwin

Sorry, didn't notice your reply earlier. 

Yes that is exactly what I had found. Seems like thyroid/parathyroid specialists are few and far between. Wonder why that is?

Quite pleased I've found one only 40 miles away. Guess it could have been worse. 

Thank you

Kate. Xx

Have you had surgery already Jasmine? Xx

Yes, I've had two surgeries but my persistent primary hyperparathyroidism is unfortunately still persisting, and I'm now going through the process for the third time, although don't let that freak you out, my case is complicated by having had a thyroidectomy 18 years ago during which my right recurrent laryngeal nerve was damaged and now doesn't function, and of course Sod's law my parathyroid adenoma was adjacent to my left laryngeal nerve which made re-operative surgery much more complex and risky, but it's not the norm so please don't worry. 

Hope all goes well with Dr Levy, as I said before I really like him, so you should be fine with him.

Jasmine x

Oh dear, bless you Jasmine. Hope you get it resolved once and for all this time. Fingers crossed my previous Thyroid surgery doesn't cause a problem.

Kate Xx

Have you had your vocal chords checked out by an ENT guy Kate?  I had overlooked that you'd had thyroid surgery too - grrrr brain fog!!!!! When you see the surgeon he might request it although I'm sure you would have been aware of any nerve damage affecting your voice after your previous surgery.  

Jasmine x

Never really had them checked post surgery, but my voice was definitely affected....have never done karaoke since, lol! Will make sure he knows about it. Xx

Hi Tigerlily

Just wanted to say good luck for tomorrow. I will be thinking of you. Hopefully you will come back with some positive news. 

Kate xx

Many thanks for your good wishes, Kate - and I lurve your cat photo - what a beauty-cat!

Tigerlily xx

Thanks. He sure is a beaut isn't he? He's my Teddy Bear (Ted). Xx

Well, Hi Kate. Welcome to the forum. I have no idea how I missed your original post, but I sure did! I'm so sorry.

It sounds as though you too have been through the mill with this stupid disease. Some, like Jasmine, have been through the mill way too many times! It amazes me how everybody keeps going and going, but I guess none of us have/had any choice. When you're suffering so badly, and you need to be well again, you do what you can until you reach that goal. I have wanted to give up MANY times through my journey. I'm 6 months post-op now, still battling some symptoms, and wondering if they are EVER going to resolve! But they seem to be very gradually doing so, so I'm not complaining. Well, maybe just a little.    Seeing what you are all still having to endure makes me realize just how lucky I am! I might still be suffering, but I am on the other side of surgery, and that is a good place to be. I think.   

Again, a belated welcome to you, Kate!

Audrey

Hi Audrey

Thank you very much for your kind words. 

I still find most of what's on here a complete mystery, and struggle with the medical information and what it all means. But what I am blown away by is how kind and supportive everyone is. I felt like nobody in the world understood how I feel, and suddenly I've got a whole group of like-minded people from all around the world, who I can have a moan to without feeling guilty! 

I'm looking forward to hearing how Tigerlily got on today, as she was seeing the Endo (get me with my newly acquired medical slang) that I have an appt to see next week.

Thanks again for saying hello.

Kate. Xx

Well, Kate, you can feel free to moan all you like on here. Everyone here understands exactly what your going through and just how you feel. I don't know what I would have done had I not found the old forum a little over a year ago. Many of these beautiful people were on that forum as well. I had been struggling to get diagnosed for 2-1/2 years when I came upon that forum. I was totally frustrated and very depressed, and I felt like there was no hope of ever being well again. These wonderful people gave me the much needed hope and support that I so badly needed. I could have never gotten through this without them all!

You will do just fine learning all about this darned disease. I bet you have learned an awful lot already! When you're this sick and need to find a way to be well again, it's just natural that you do whatever you need to to reach that goal. You are doing just fine, and we are all here for you to help you in any way we can.

I wasn't on here yesterday, so I've got a lot of catching up to do. I do hope Tigerlily has posted all about her appointment. I will be posting about my new lab results and my optometrist's appointment very soon. I have been very busy here at home lately, and I just can't seem to get caught up with computer stuff!

As I always say, march on!!!

Audrey

Hi Kate

I expect you've seen my post about seeing Dr Levy and here's wishing you a good consult with him tomorrow.

He's keen to help and seems a really nice sympathetic guy - hope you get what you need from him.

Keep us posted - Love Tigerlily xx

Yes Kate, ditto from me! Hope all goes well with Dr Levy, looking forward to hearing how you got on with him.

Jasmine x

Good luck with your appointment with Dr Levy.
Amanda xxxx

I have no idea who Dr. Levy is, being here in the US, but he sounds like s wonderful man! Good luck, Kate!

Audrey

Just adding to the Luck pile, Kate    Hope your appointment with Dr Levy tomorrow goes well.

Love
Brigitte x