hi everyone Im new to this site and Im looking for a Endocrinology consultant who has a clinic in the UK where hopefully I can can diagnosed of the condition which I think may be hyperparathyroidism.
Any help would be gratefully received.
I have had surgery before 15 years ago to remove a parathyroid but the consultant who treat me has now retired.
Thanks again in advance.
Olly
Hi Olly.
I have a good Endocrinologist. Can I ask where you are based.
Hi,
Sorry I just typed you a long message explaining a few things and about generally because of the lack of knowledge about pth by gp's and endocrinologists, people tend to go directly to a parathryoid surgeon. Too long to repeat again but I suggest you join the Facebook Group which will tell you anything you need to know, just go to Hyperparathyroid UK Action4Change and give a few details about yourself and say Elaine sent you. It's a private group and Sallie who started the group (we now have over 700 members) has achieved quite a bit with NICE and they are going to start adding guidelines for these ignorant endos and Gp's thanks to all her hard work.
Regards
Elaine
Hi emma, thank you for your reply, I'm based outside the UK so can travel anywhere but need to go to a consultant within the UK, I have had surgery in 1999 parathyroid was removed one I think, this was at a hospital in Sheffied.
Could you PM me if you have any information regarding a good endo speacialist that could help me, my symtoms are very varied which could make a difficult diagnosis. I'm feeling very unwell at this time and have very confusing fluctuating test results.
Kind regards
Olly
Hi elaine,
Thank you so much for your kind message, I dont have a face book page so can I contact some other way, Its quite urgent that i receive some guidance to find the right endo so l can receive a diagnosis. i
best wishes
Olly
Hi Olly,
as I said previously, best to go directly to a surgeon who does parathyroidectomies. The endocrinologists generally leave a lot to be desired. I don't know who is operating at Sheffield but Sallie Powell who was the lady who went through 7 years of hell with misdiagnosis, was in the newspaper and started the facebook group and website eventually had her op at Sheffield with Barney Harrison, who unfortunately has retired. There are only a handful of really good surgeons but depends where you want to go in the country. Bristol for example has Justin Morgan, an excellent surgeon who was recently interviewed along with one of our members on tv at Bristol. Fausto Palazzo does many, complicated ops too, at the Hammersmith. I will try and get hold of the list and copy and paste it later.
Regards
Elaine
BAETS audits for parathyroid surgeries between 2011 and 2015: Latest audit is due out at the end of this year.
Between November 2010 and December 2011 there were 2,102 parathyroid ops carried out by 91 surgeons.
Highest number of Parathyroid surgeries: Top 10
Fausto Palazzo 159 Hammersmith London
Taleb Jeddy 83 Basildon University Hospital
James England 71 Hull Royal Infirmary
Jonathon Hubbard 69 London Bridge, St Thomas London
Greg Sadler 62 Oxford
David Scott-Coombes 50
Chas Ubhi 49 (no longer listed at Baets)
Alison Waghorn 48 Liverpool
Fiona Eatock 46 Belfast City Hospital
David Chadwick 45 Nottingham
This compares to 2655 ops from 1st Jan to 31st December 2015 by 126 surgeons.
Highest number of surgeries: Top 10
Fausto Palazzo 155 Hammersmith London
Neil Tolley 91 Hammersmith London
Nicholas Law 87 Chase Farm, Foyal Free London
Helen Doran 87 Salford Royal Manchester
David Smith 80 Ninewells, Dundee
Jonathon Hubbard 78 London Bridge, St Thomas London
Paul Raymond Maddox 51 Bath
Radu MihaI 58 Oxford
Bence Forgacs 47 Manchester
David Chadwick 42 Nottingham
If you want to go down the endo route, which I personally wouldnt recommend as the surgeon will still do the relevant tests, this is a list the members compiled. Fortunately it doesnt have the expensive and rubbish endo I used:
Recommended (by members) list of Endocrinologists
Dr Adeel Ghaffer Dorset County Hospital Dorset
Dr Wynn Arrowe Park Hospital Merseyside
Dr Saleem Arrowe Park Hospital Merseyside
Dr Carey Sunderland Royal
Dr Bhatti Washington Spire, Tyne and Wear
Dr Rooney Antrim N Ireland
Dr Chandrasekaram Stepping Hill Hospital
Dr Andrew Gallagher Queen Elizabeth University Hospital Glasgow
Dr So Pye University of North Tees Hospital, Cleveland
Professor Bill (WD) Frazer Norfolk & Norwich University Hospital
Dr S Oyibo Peterborough City Hospital
Miles Levy Leicester Royal Infirmary
Trevor Howlett Leicester Royal Infirmary
Mr Muhamad Quraishi Doncaster & Bassetlaw Hospital
Dr Aziz King’s Mill Hospital Sutton in Ashfield Nottinghamshire Professor Fernando King’s Mill Hospital Sutton in Ashfield
Dr Paul Carroll - London
Guy’s Hospital, St Thomas’s Hospital or privately London bridge Hospital
Just as a matter of interest I looked up In This Section..about Mr Muhamad Quraishi as I wondered why there was a Mr had got in with the Dr's (endos) still don't know why but apparently he was in the news back in 2013 and nominated for the silver scapel as he removed a 2 kilo growth from a woman's neck (wouldnt have been a parathyroid gland I am sure lol)
Regards
Elaine
Thanks elaine,
Im so grateful for the information you have sent, I have been reasearching now for two days I'm so happy with what you sent me i have come up with the same names as you.
I think having this condition is awful, my life has been changed by this twice now, the worse thing is feeling so helpless and it goes undianosed for years.
I have had to fight to get the funding to even get to the point where Im going to be seen by hopefully one of the surgeons whom you have previously mentioned.
I will keep you updated on my journey through this hopefully seeing light at the end of a long tunnel.
I thank you so much for your kindness and support.
Olly
Hi Olly,,did you put on excessive weight when you had your parathyroid out?
You are most welcome. Sallie Powell has worked her socks off to get recognition by NICE and has created a website as well as the Facebook Group. All because the symptoms are brushed aside by ignorant gp's and endocrinolgists who know nothing or dont care about hyperparathryoidism.
I have given up using my gp surgery, firstly the one kind doctor wanted me to take 3000mg of calcium per day for my osteoporosis but she hadnt noticed that I had high blood calcium. Also they dont like spending out on vitamin D tests when you can get a test kit from Birmingham NHS Lab for £28 yourself, I have had two done. Also our surgery do not do pth blood tests because "it can go off in the van"!!!!!!!!!!!!!!!!
I got all my results printed off as I dont trust them and that amount of calcium carbonate (the worst kind of calcium) could have ended up half killing me, and so I decided to seek out private help but that didnt work out because I spent a few thousand on a useless endocrinologist and I am more or less back where I started.
Wish you luck and let us know how you progress.
Elaine
Sorry to but in, but many of the ladies in our group have stacked on the weight. I dont know why, I think it is because although they suffer with nausea, a lot of them snacked on junk type food because they couldnt face proper food. Also some were put on anti depressants to shut them up as it was all in the mind and that too caused weight gain.
OMG I just clicked on an advert at the bottom of this page about parathryoid operation and it went onto this surgeons website:
"Welcome to the personal website of Mr Andrew McLaren DM, FRCS.
Mr McLaren is a Consultant Surgeon with the Buckinghamshire Hospitals NHS Trust. This website provides a factual description of services provided and some information about specific procedures.
Mr McLaren sees NHS patients at both Stoke Mandeville and Wycombe Hospitals.
Specialist one-stop diagnostic clinics for thyroid lumps are provided at both hospitals in addition to general surgery including laparoscopic hernia repair and laparoscopic cholecystectomy.
Mr McLaren also accepts private referrals and sees private patients at The Chiltern Hospital and The Paddocks Hospital.
Please use the arrow at the bottom of each page to scroll through the site, or alternatively, select a category from the menu on the left."
I met a lady in person last year and we are now friends of Facebook who had this person and he unfortunately removed lymph nodes by mistake for parathryoid gland. She spent a few years of absolute hell, had to go to Tampa where they removed one gland but there was too much scar tissue from previous op and so she had to wait for what seemed an eternity having venous sampling and every imaginable test until Mr Palazzo successfully removed the last offending adenoma. Also another friend who I met in same group last year had a Professor Drake try to remove an adenoma going in from her back. This was an epic fail and again after months of torture, Mr Palazzo finally removed it a few months ago.
I'm going to but in aswell. I haven't had surgery yet. I'm seeing the surgeon today but I have gone from 9st to 18st and I'm hoping we lose weight after surgery.
That's terrible, you poor soul. Such an effort to cart all that extra weight around and not good for the joints. I gained 1.5 stone and feel too heavy. I hope you get yourself sorted quickly. Take care x
hi Dave, sorry just seen your question, No the opposite I have hyperparathyroidism for sometime before it was diagnose it was in the 1990. During that time i piled on weight to a size 22 after my op i lost 5 stone.
Ive recently piled weight on again over last two years.
I suffer with nausea very badly two yeasr ago and still have days when i feel very sick all day.
olly