Saying Hello

Thank you so much for this site. I have been very lucky so far - had a blood test as I was having palpitations and my high calcium levels were found in January. Following more tests which showed increased levels of PH, I have just had my appointment with a charming endocrinologist. As I had read many of the posts on here I was prepared for a battle but he pretty much opened with saying he thought I ought to have surgery! So I have some more bloods and a scan before seeing him again in a couple of months. I put most of my symptoms down to getting older and going through the menopause but the hope that I might get the real me back is so exciting as I feel as though I have been thinking through a fog for years.

I had my first kidney stone in my 20s so I'm curious whether I could have had this disorder that long - I must admit I'm rather anxious about what the bone scan might show.

I am horrified at the battle that do many of you seem to be going through to get the treatment you need. I live in Lincolnshire, not exactly the cutting edge of medicine, but I have had an easy ride so far which makes me feel very guilty as my symptoms are very mild.

Anyway, sorry for waffling and thank you for sharing your experiences as it really helps.

Hi Meggy, and welcome to the group, although sorry you have to be here, if you know what I mean......

I'm so pleased to hear that you are having such a smooth journey through the PHPT process, that's exactly how it should be for everyone.  It's outrageous how inconsistent endocrine services are throughout the UK, and how difficult it is for so many to get diagnosed, then get the necessary surgery, so it's good to hear when someone has something positive to say about their experience.  Which hospital is your endocrinologist based at?  I believe Lucycatnaps is from Lincolnshire too.

Yours is a familiar story, attributing symptoms to ageing and menopause etc, and it wouldn't surprise me a bit if you've had this rotten disease for so many years!  It was first noticed that I had raised calcium back in 2001 and PHPT was speculated upon, but then I slipped through the net all these years as the medics never pursued it as a diagnosis, but when I had my surgery in Tampa around seven weeks ago, Dr Norman's opinion was that, judging by the size and activity of the tumour he removed, I'd had PHPT for at least 21 years.

Don't feel guilty that your symptoms are mild, Meggy - rejoice!  And I hope they stay that way for you until you get your surgery.

Jasmine x

Hi Meggy and Welcome!
Yes I do live in Lincs and would be very interested in knowing who you saw! I had a high calcium on Jan 10th, repeated with PTH on 31st of Jan. My GP referred me to a Dr Dilip Eapen, who I think only visits here and is based at Lincoln. My appointment is not until May 13th! I contacted the local hospital to see if there were any earlier appts as I felt 3 months wait was awful, but was told that was the soonest and to ring Lincoln. I rang Lincoln and told the same, nothing sooner but have put me on a cancellation list. I do remember my GP saying to me that he has never seen PHPT in his career and that I am the second to go see him this year. So I said guess we are like buses then two at once.
Sue

Hello Meggy, welcome to the group

Like you I have had a fairly easy journey in getting diagnosed and onto the surgery list and I also have only very mild symptoms. My bone scan showed I have osteopenia which I can hopefully reverse once surgery is out the way   

I hope you enjoy being on the forum, we have a really great bunch of people just ready and waiting to chat.

Take care

Nelly



Anyway I hope you enjoy the forum and

Hi Meggy
Glad you found all of us. Brilliant that you've had an excellent response from your doctors, that's the way it should be.
Amanda xxxx

Thanks everyone. Lucycatnaps, I live in Boston and saw a Dr Tarik at Pilgrim hospital. He did say the name of the ent surgeon I'm going to be referred to (love autocorrect, apparently he's an "entire" surgeon!) but I can't remember it - I was still in shock that he mentioned surgery so quickly as I was expecting a right battle. My blood tests were about when yours were and I saw him last week. He said he'd refer me for surgery because of the kidney stones I'd had and my age - 50 is the cut off but I'd only turned 50 the week before so slipped in. The other indication would be if the bone scan showed anything. I'm having that in a couple of weeks (it actually came through really quickly but I'm on holiday so it's been put back to the end of April).

One thing I'm struggling to find is how long I'd need off work following surgery, anyone got any ideas?

Hi Meggy, as I recall some people recover really quickly from the surgery and return to work a week or two after, but others need a few weeks or more to feel fully recovered.  It depends on the type of surgery you have I guess, and also if you are particularly PHPT symptomatic prior to surgery, as some people get really debilitated by the disease and their symptoms take a bit longer to resolve after surgery before they feel well enough for a return to work.  I'm in that category and will be returning to work after Easter following surgery on 18th February, but it does vary a lot and is an individual thing really.  If you're not particularly symptomatic and you have the mini surgery you'll hopefully do really well and be back at work in a week or two.  Having said that - DON'T RUSH!  Give your body time to heal and mend and yourself time to rest and recuperate.

Jasmine x

Hi Meggy again,
Thanks so much for replying and the info! I am so glad that things are moving along pretty fast for you. I go to Parkside surgery, would that ring a bell? I suspect you were my GP's number one lol. It just shows how much variation there is in services. I am older at 58 so maybe that has an effect on treatment criteria. It is the waiting that really sends me into a panic, but am using this period to get a couple more blood sets in before I see him. So far I have 3 raised calciums although my last PTH had fallen back to the normal range.
Sue

I'm not at Parkside so I'm not your number one wonder if he/she will find us on here:-) I wonder why you were referred to Lincoln and not Pilgrim, does it suit you better? Dr Tarik said age wasn't a problem as it doesn't make sense to treat for 10, 20, 30 years so hopefully that'll be ok too for you.

Stupidly I have no idea what any of my blood levels were - I've just been for another blood test for loads of stuff but all I can remember is that Vitamin D was on the list (blame the PTH fuzzy memory). I do know that I've had 2 raised calcium levels and one high PTH level but by how much I don't know - I'll take notes next time.

Just been checking my diary, the whole process for me started in late November and I had my final lot of bloods back on Jan 10 so about 2 weeks ahead of you in the process - saw my consultant 1st April which puts me about 6 weeks ahead of you now hmmmmm, that doesn't seem fair. It'll be interesting to see how long you have wait for the DEXA scan, mine would have been 2 weeks before I rescheduled it.

As I said before I just feel relieved that there's a reason for feeling vaguely rubbish - only problem now is NOT ascribing everything to this.

Ok, my turn to chime in here.   

Hi Meggy, glad to have you with us here!     As Jasmine stated up there, sorry you have to be here, but if it's support you're looking for, you've come to the right place.    We all help each other stay up on our feet while we battle this horrid disease.    I don't know where I would be had I not found the old forum last year.   I never dreamed of finding such wonderful people so willing to help me.

I am very happy your symptoms are not any worse than they are.   Yes, you are very lucky.   As Jasmine stated, I too hope they don't get any worse before your surgery.   I have suffered many symptoms, and 4-3/4 months post-op, I'm still dealing with many of them.   Dr. Norman says it can take up to 6 months to fully recover, but it was just recently stated here on the forum that some people take as long as a year to feel significant improvement.    Either would be fine with me, as long as I get well.   I wouldn't be thrilled about feeling all of this pain for another 7 months, but as long as I will feel good again in the end, I guess I can deal with it.

I'm also happy you didn't have a huge struggle getting diagnosed.   That is wonderful!    I myself fought with my 3 different doctors for 3 years before I finally got 1 to consider the possibility of HPT.   She never did diagnose me, but started to think it might be possible.   It was Dr. Norman who finally diagnosed me after dismissing me 2-1/2 years earlier.    It has been a long struggle, but I have my friends here to keep me going, and we will all be glad to keep you going too!

When you have a good day we will rejoice with you, and when you have a bad day, we will be here ready to listen and help you keep your head above water.   Nobody drowns here!

Again, welcome!

Audrey

Hi again Meggy,
My appointment is at Pilgrim too with Dr Eapen. My GP seemed to think the endo was a visiting one from Lincoln and not based at Pilgrim. When the appointment came through for mid May and nothing available sooner, they suggested ringing Lincoln to see if they could fit me in earlier, but nothing available either. My GP also suggested it may be Kings Lynn as that is where the first one went. I saw ENT re the swelling on my neck mid March which is to do with my salivary gland I think? I have seen Mr Oko in the past and he is lovely but this time it was his underlings dealing with me. I do not know if Mr Oko does parathyroid surgery but after I told ENT about my raised calciums they said they would see me again after the endo appointment and are dipping out for now as am also under the oral maxillary team at the moment too for the blocked duct in mouth. ( Had it dilated and dredged last week )
Sue

That sounds horrible! My ent chap had a name starting Chand... (ish). I wonder if the delay is also because you are under other consultants too. I'm also wondering whether the appointments people only looked for earlier appointments with the same consultant rather than with Amy endocrinologist? If you've already met your ent people you might overtake me at that point:-)

Hi - can I ask if you good people are in England or somewhere else????

Hi Sally, welcome to the forum, and I will reply to your introduction post shortly - it's good to have you with us, glad you found us.

We're an international group Sally, with members from around the UK, in the US and Canada.  On our old forum, which is about to expire, we had members from further afield too - Sweden, Australia, South Africa - and I really hope they manage to find us and join us here too.

Jasmine x

Hi Sally and welcome

Yep we are in England, admin live in Somerset. We are happy for anyone to join so could have peeps from just about anywhere, makes for a lively interesting group with different experiences to compare.

Will chat more later, have to let the chickens out before they get really annoyed !

Nelly  

Hi Sally nice to meet you. Nelly hope you survived the angry chickens.
Amanda xxxx

Hi Sally, I'm from the US.    I think I'm a bit outnumbered here.  Seems most are from the UK, and what a great bunch they are!     Glad you found us!

Nelly, do you really have chickens, or is that another British term I am unaware of?    

Audrey

Now I'm trying to think of any double meanings we could have for letting the chickens out... :-)

Audrey I have your 6. In US cop lingo it means [ I have your back ]

That's right, Kathi!!      Now we need to find out about those chickens!!        

Yes we do Audrey. I still don't know what was funny about about I'm afraid to say it fanny pack.

Haha! I PMd Audrey to let her know why we Brits find it funny, so I'll  do the same for you Kathi, seems only fair....

J

Yes Audrey I really do have chickens and quails. We did have a really grumpy, cross cockerel once, he used to chase my daughter when she wore her red wellies. I only have nice girly chickens now although one of them thinks she is a boy and crows   

Nelly

Awww I want chickens now...... are they layers Nelly? And what about the quails, do they lay for their keep or just pretty and ornamental?

J

My grandad used to keep geese who lived at the bottom of a very long garden. It was a race to get from the gate to the back door before the geese could race up the garden path to see you off the premises.  They were fierce geese .......!

Jasmine