A picture tells a thousand words......
Robin Basso
Robin joined us in April 2019, diagnosed at 33 weeks pregnant, with Primary Hyperparathyroidism. Her adjusted calcium was 2.97, with elevated PTH of 12.6 range (1.59-7.24). Robin had some symptoms for 2 years but hadn't at that point seen an endocrinologist.
Without wishing to cause distress, we alerted Robin to the seriousness of being monitored for both her and her baby.
We were aware of two members whose newborn babies had experienced hypocalcemic tetany. (see link below).
We were very happy and see this beautiful picture of proud parents Robin and Mike with their baby daughter Cali Marie, born at 1.20am by cesarian, on 19 May weighing a healthy 8lb, 3oz.
Cali Marie was born with hypercalcemia, her level of calcium was 3.2mmol/, matching Robin's increased levels. Robin was given fluids and a diuretic to reduce her levels, and Cali was tested every 4 hours. Her levels reduced into the normal range and she continues to be monitored over the next few days
Robin can now safely have parathyroid scans and hopefully a parathyroidectomy within 12 weeks. We will update with both their progress.
Hypocalcemic tetany in the newborn as a manifestation of unrecognized maternal primary hyperparathyroidism:
National Institute of Clinical Excellence (NICE) Guideline for Hyperparathyroidism (primary): diagnosis, assessment, and initial management was published 23 May 2019:
https://www.nice.org.uk/guidance/NG132
The majority of our members are in the UK, but we celebrate when our members are cured from PHPT, wherever in the world they are .
Sheri Ferber Sept 27, 18
Greetings all from my home away from home an Airbnb in Tampa Florida. Arrived at NPC 11 am. Sestamibi scan is done. Last surgery of the day. Bad boy found embedded at center right. Went into surgery at 2.10 pm and left Hosp at 4.45/5pm.
All pics post surgery. Nurse Kelly, Surgeon Doug Politz, THE culprit and me a few moments ago. Horse pill calcium is taken. It hurts but I have already eaten! So far so good! Wishing everyone a terrific healing!
My incision is lovely. My previous incision went from the outer corner of each eye. The para incision went right on top, it is slightly purplish but hardly noticeable. I am taking 2 tabs of calcitrate plus, 500mg of magnesium, 5k Vit d3 daily, and 50k D2 weekly. Strangely I have gained 9 lbs. Not excited about that but do have a wildly improved appetite. Must get the booty scooting so that can come off.
I just want to tell you how much you all mean to me. Your wisdom, support, ideas, humor all such nice additions to this dreadful dx. You are the high point of it all. I would miss you terribly if you went away
14 days
post op!
Jackie Abrey - November 1st 2018
Well, here I am at the Nuffield in Cambridge (UK).
My op should be at about 3 pm.
Thanks again for all the support. Without this FB group, I wouldn’t have known much about this horrible disease. I’ll post updates again soon.
Hope all of you waiting for your ops get them soon, and those who have had them continue to heal.
Jackie xx
Thank you for all your lovely messages of support yesterday. My op went very well. I had one tumorous gland removed. Not sure of the size until I speak to Mr. Fish at my post-op appointment. I already feel much better than pre-op. Nausea has gone, so eating is a pleasure again (even this soon after surgery!). The terrible bloating has gone. I feel a bit weak, but that will pass.
I’ve had blood tests this morning, so no results yet. I’ve been given Vit D and calcium, plus painkillers to take home. Just waiting for hubby to come in and take me home. The Nuffield in Cambridge is a fantastic hospital (more like a hotel!). I wouldn’t mind staying a few more nights!
Dana Johnson
Day four post op. Staying in my PJ's like Sallie JP prescribed. Definitely tired. I think flying home 12 hours after surgery was hard on my body. The descent really bothered me.
Bone pain is gone. Brain fog is gone. Vision much better. Last two nights... Best sleep I have had in years. I am tired and my neck is stiff. No pain from the incision. I am going to be lazy and watch movies and rest for the next few days. Very happy.
Hi paratrooper family. Norman Parathyroid Centre and Dr. Mitchell were brilliant. In fact, everyone was top notch. One tumor removed from the lower right side. Bone pain was horrendous for the last few days, now it’s totally gone.
A little bit of a headache. Took one Motrin and calcium.
Thank you for all your support xo
Stephanie
What a difference a week makes. I had my stitches out yesterday and I am really pleased with the way it is healing. I have had a lot of positives since last Thursday, I no longer have sausage fingers and can now wear rings, I can't remember the last time I could put them on. The swelling in my feet and ankles has also gone. I can see bones and veins that I had forgot I had. My speech has also improved, no more "hang on, let me think" during a sentence while I try and drag the word I am looking for, out of my brain. Another biggy is I've lost 3lb of much-needed weight loss. I still have some jitters but that's expected. There is so much joy to be had on this other side.
Keep up the fight, you know when you are ill, and don't let anyone convince you any different. Xx
One year update coming soon...
Teri James Bellis:
It's Day 5, and I am doing far better than I ever could have expected at this point. Specific areas of obvious (and, in some cases, surprising) improvement that we have noticed post-op include:
Brain fog is immensely improved, and was immediately noticed after the surgery in the recovery room! The constant pain in my ribs and other bones, when pressed, is simply gone. We noticed that on day 2. I actually did not know that bones don't hurt when pressed.
My blood pressure has been normal every time I have taken it (at least once per day) since the surgery. I have not had a normal BP reading in months (years?). My stomach bloating and even puffiness in my face has decreased markedly and noticeably. I have had no anxiety/panic/adrenaline "attacks" since the surgery, even on the day we had to fly back and contend with flight delays; I was having these daily prior to surgery for many months. I have a great deal of energy; prior to surgery, I was so fatigued all the time. This is much improved!
For 5 days out, this is a remarkable difference...
I feel much the way I used to feel; (the person you never met).
I honestly thought, despite reading anecdotal responses that reported this sort of thing, that it was "hogwash" (or bs) ...
but I am astounded at how different I feel overall.
Primary Hyperparathyroidism can have a very negative impact on partners, and family also. We have talked about poor life quality for people with PHPT but please do tell your doctors about the impact on your family too.
Kathleen Cave
Hi all,
I'm just writing to say I am feeling fine after my op at Sheffield.
I saw Mr. Saba on the 15th who said 'Job Done'.
I would like to thank you one and all for all the help and support I have had, I did nearly say 'Sod it' but you all and Robert kept me at it and glad I did.
I haven't felt this good in a while. We went to our local eatery and I had a couple of white wines. If we can help other para sufferers Bob and I certainly will. I know I am not out of the woods yet but I am getting there.
Kathleen xx
Read Kathleen's story written by her husband Robert Cave on our About HPT UK page.
Clare Williams
Look at me! Bouncing on a trampoline at 6.45pm!! That's the time I used to go to bed pre-op!!
Astonishing post op pictures coming soon
Kate Flucker
Kate has had a very long journey following a failed parathyroidectomy nearly 2 decades ago. She joined us when we set up in September 2014 after originally meeting in the US group Parathyroid Disease Support and Awareness. We have followed her journey through 2 more surgeries. Despite being told by some surgeons that her level of 2.38mmol/l, with slightly elevated PTH and vitamin D within range, was unlikely to be hyperparathyroidism, she did not give up. Kate endured over 30 years of kidney stones (over 75 of them). Kate had a second unsuccessful surgery by Mr. Dominique Byrne on Tuesday, June 12th, but is optimistically looking forward to a third, and hopefully final, surgery before the end of the year (2018).
Third time lucky for Kate. Mr. Byrne was determined to find the elusive adenoma. At kate's post-op appointment, he revealed he found more than he expected to, much more!
Kate found out on 20th March from her pathology report, that Mr. Byrne removed 6 adenomas! 5 small and 1 large. He suggested that during Kate's 1st exploratory op, somehow a parathyroid adenoma split and apparently once split, they double, and though it explained why they did not show up on scans. They were not found when he first operated on Kate. She was also told pathology revealed she had Hashimoto's, which was never diagnosed, as well as thyroid cancer which came as a great shock to Kate, but since he removed her thyroid, no further treatment required.
Kate is really enjoying life again finally after 18 years of being unwell...
Clare Williams - Clare's excitement is contagious and we are so happy for her!
Clare really listened and took our post-op advice: Take 3 weeks off work, rest and allow your body to come to terms with the hormonal rebalance. Listen to your body and have calcium, magnesium and vitamin D to hand to assist with bone resorption and symptoms of low calcium. If you are taking calcium and or vitamin D, you should also take magnesium. Enjoy ticking off those symptoms as they disappear. Go easy on yourself, people recover at different rates.
'If you're pre-op, please please don't give up on yourself. Give yourself a break. You're sick. Really sick. Use your time wisely and know in your heart that it's only temporary'.
'You WILL get there! You WILL be your old self once again. The journey on the other side has its ups and downs too, but it's much happier on this side! Can't wait to see you all here! Sending much love to you all! Keep fighting 'pre-oppers'. Your time will come'.
Trupti Dasigi Moore
The first holiday that I have really truly enjoyed for YEARS! With my beautiful boy 😎💖 in Lanzarote
Jenny Rossington.
Yes, this really is the same lady 12 months apart. The photo on the right is Jenny 8 months after her parathyroidectomy. Having met Jenny before her surgery I am astonished at how well and how youthful she is looking a year on, but I can really appreciate just how poorly she was before her surgery.
John Dennick.
Surgery December 2017 QE Birmingham. In September 17, he wrote: 'All I know is any trace of the person I used to be Is gone I don't want to talk to anyone, feel black and empty at the moment'
December 17: Hi all I'm on the other side! Surgery took about 2.5 hrs. The adenoma found on ultrasound was 4 x 3 cm like a golf ball!! He found a second adenoma hidden behind it that was about half that size.
Alison Ayres
5 days after parathyroidectomy, then 8 months later after a 4-week wild swimming tour of Europe.
Read Alison's story on our Case Stories Page. The difference in 'Quality of Life' is astonishing for many post op and Alison is literally glowing with health.
Incredible and lovely for us to see. These pictures inspire us not to give up fighting for surgery.
Lisa Greene:
Well, thank god for that.
Parathyroidectomy successful. I am so thankful right now. I don't have any details yet but it was a long day with a few hiccups but the main thing is they got it wherever it was.
Feeling thankful in Dublin
Thanks to Nik Thomson for asking his surgeon Justin Morgan and team to take these amazing photographs 27 June 2017 of his parathyroidectomy!
The adenoma attached to the parathyroid gland was 1 gram in weight
Points West News Story with Bristol Parathyroid Surgeon Justin Morgan discussing Primary Hyperparathyroidism
Molly Simmons...
What a difference after 10 weeks
2 days after parathyroidectomy
Lorraine Shuker @ 6 months post op: Mr Sweed at Leighton Hospital in Cheshire deserves a Gold star for this little incision."
Hubby is now 2 weeks post-op. He felt so brilliant after a few days off work that he went back within a week of the op. This was against the advice of Mr Jani (he recommended 2 weeks off) and just about everyone else but what can you do.
Julia Ellins:
Dear All, Today marks one year since my surgery! Pre-op; I lost nearly a stone and a half, despite still eating normally. I had awful fatigue, bone pain, constant thirst/peeing and brain fog.
Fast forward to today, I am back up to my normal weight, have my energy back and on the whole feel great!
Keep smiling and fighting, fellow paras...
You will get there one day!
Leigh Harrison McMichael
Mom and I are both out of surgery and doing very well! Before spilling the details, I just would like to say thank you to everyone- for the support, the hoards of information and late night 'para comradery.' Truly, without this group I would not be sitting here today with this awesome incision on my neck. (I wish the scar would stay- I will wear it proudly).
Mom and I both had two problem paras in there. Hers were full on adenomas and mine were very enlarged and on their way.
No doctors believed me. When I struggled to pick up and care take for my now 19 month old daughter I was told I had postpartum and needed to 'take me time for four hours per week.' I missed out of a lot of precious fun with her because of this horrendous disease and I'll be working on accepting that as time goes on. Extremely thankful to have the chance to make up for lost time this summer when I am no longer couch bound and bed ridden.
Amanda Botterill
Pre op photo October 2016
5 Days post op (April 2017
September 2017.
Amanda has a keloid scar. Her surgeon prescribed hydrocortisone cream and silicone dressing. We will update.
Jane Allen Ex-Askew June 2017
Some fleeting moments of my usual hand and feet pain but the foggy hard to concentrate brain symptoms have gone! I can actually read instructions today without re-reading several times
Dawn Austin lives in the UK but struggling to get a diagnosis she ventured to NPC Florida to get her life back in January 2017.
1 hour before surgery.....
10 days post op!
Carolyn Jenkins: June 2017
Steri strips off! Healing well, can't quite believe how small the incision is given that the para measured 4.5 cm. 6 days post op and feeling a little better each day.
Day 6 post op and totally amazed at the speed my body is going at to heal itself. A huge thank you to everyone in this group who have supported me along the way and to all those still waiting and fighting don't give up it will all be worth it in the end.
Liz Hicks
But see how well it has healed in 3 weeks! Amazing!
Leanne Passmore:
Hi all, so I am 12 weeks post op and 10 weeks away from my baby boys due date. This has not been the smoothest pregnancy as being diagnosed as having hyperparathyroidism and then being operated on in a short space of time has been tough, especially as they took half my thyroid and I no longer have any working para's.... 😏but today I got to see this image of him and know my baby is a fighter and all will be well 💙
See Case Stories for update January 2017!
March 18 2015 Alexander following years of kidney disease and transplant had surgery in Florida:
Good morning to all here . It's been five days since surgery and first few days had leg pain, hands ,fingers but with the calcium pills and some here mention cup of milk; it's has helped greatly 😀 some here also mentioned being wired or jittery and I have felt it last night and couple of times before really weird . Also my blood pressure has been lowering . I know it's going to be a lot of changes so I am OK with that. Over all I am happy that I made this move to go Tampa . I wished I did this sooner . I feel like fire crackers been lighting off and just thankful for the NPC for all they do and and for this page here that connects all walks of life world wide with the same issues and we can relate and give each other encouragement to over come this dreadful disease.
May 19, 2016:
I know it's been a while but never forget the love I got from this great group . Well my last pth is 90 and calcium 9.2 that's where I am. I want give encouragement for those that I was able to go full time to university and 4.0 average all due to fact I got the surgery and can focus and I was able to start back surf fishing . Never give up and push and fight to get back to feeling great .
Jennifer Holloway McCurtrey: Two days post op... Then 18 days later!
I am gaining more energy every day, no longer have hip/bone/muscle pain, depression has lifted, and my brain fog is slowly disappearing. Don't give up! I am here to tell you that there is hope! This is me two days after surgery and today 04/09/16
Lori Pollock-Sweet
Two weeks after surgery
and before.
Nicola Mott - Before and After Parathyroidectomy
Meg Woodcraft:
I'm 7 weeks and 2 days post op. Brain fog lifted immediately!! The lights went on and have been ever since...
My focus and clarity are back and I feel able to engage socially. I drove to Bristol and back from Essex the other week. Something I hadn't done for a couple of years..