New Member - Young Adult with PHPT

Hi everyone,

I'm not usually one for posting in forums, but I am feeling pretty lost and looking for some friends/community that understands what I'm going through...

I'm 25, hailing from Texas, USA. I visited my doctor in November after feeling fatigued and experiencing some lower abdominal discomfort. My doctor thought that maybe I had become anemic (family history) and that I had Irritable Bowel Syndrome as a result of graduate school finals. He sent me in to do blood work for my iron levels and a comprehensive metabolic panel. The results came back with my iron being on the lower end of the normal range, but my blood calcium came back at a whopping 11.2 mg/dl! This set me on a long path filled with lots of blood and urine tests. These tests also showed that my PTH was high, my Vitamin D was low, and my urine calcium was high. 

I've met with an endocrinologist a few times, who confirmed that I likely had both Primary Hyperparathyroidism (they found a small growth on my parathyroid via ultrasound) and Secondary Hyperparathyroidism from Vitamin D deficiency (my PTH levels decreased a little bit after taking supplements). 

Fast forward to now: I've done a SPEC/CT scan of my parathyroid glands, which also confirmed the location of the growth. Now, I'm scheduled for surgery in a few weeks! I'm definitely worried/anxious/terrified since I've heard it's rare for someone my age to have this. Are there any other folks out there who were diagnosed at a young age? I would love to hear about your experiences! I'm so tired of feeling completely exhausted and my goodness, my stomach just has not felt right since being diagnosed. Maybe something to do with the Vitamin D and iron supplements I'm taking? 

I'm glad to be here, y'all! I look forward to chatting more about hyperparathyroidism.

Hi and welcome onboard.

I'm just on my way out to walk the dogs so this is a quicky reply. We do have some young members so you are not alone 

Your vit d is low because of the high calcium so I'm not sure why your docs think it is caused by secondary both, and I along with others on here can confirm that vitd d and iron supplements can undoubtedly make you feel extra crappy. 

It is good you are booked in for surgery soon, the surgery itself is usually fairly straightforward, are you having it done as a day case or staying overnight ? In the UK it is usually an overnight stay to make sure calcium levels are normal post surgery. Recovery for some is very quick, others have to be a bit more patient. We have members who have noticed dramatic improvements almost immediately so hopefully you will to. 

Don't be terrified its really not that bad, others will be along to chat about their experiences, I will give them a nudge. Must dash dogs are getting impatient.

Nelly

Hello lovelydark

Glad to have you here on the forum with us - you will certainly be amongst friends. Yes, we do have some younger members and I hope they will be able to share their experiences with you soon.

I'm a not-so-young member (62) and seem to have been having all the same symptoms as you (plus brain fog, depression, supreme irritability, and extreme tiredness) for some years. But I had surgery just before Christmas to remove 3 hyperplastic parathyroid glands and have since been feeling much much better!

Don't be too worried about the surgery which should not take long in an experienced surgeon's hands.

As Nelly says, though, they sound a bit confused about the Vitamin D deficiency. Vit D usually is low with parathyroid disease (from an adenoma) as it's the body's way of preventing you from absorbing even more calcium from the food you eat (that is one of Vitamin D's jobs in the body - to help with calcium absorption.) Secondary hyperparathyroidism from Vitamin D deficiency is usually only seen in people who already have severe kidney problems, and with secondary hyperparathyroidism the calcium is low, and not high.

But at least you are nearly there and out the other side of surgery to a new life - that will be wonderful for you, as it sounds as though you have been suffering with a PTH disorder for some time.

Glad to have you with us and do please keep us posted on your progress!

Love from Tigerlily xxxx

Hi there lovelydark! Welcome to the forum! As we always say, sorry you have to be here but happy to have you join us.

I am not too young either. I just turned 62 a few days ago.

The ladies are correct about the low vitamin D. Your doctor is a bit confused about this. You do not have secondary HPT.

I'm VERY glad you are all lined up for surgery!! Some of us had to fight for years to get diagnosed. It took me 3 years to get that diagnosis. Maybe that was one reason I was so excited and overjoyed to finally have the surgery.

I am 14-1/2 months postop. I had 2 adenomas and a thyroid nodule removed in Tampa. It was done as an outpatient procedure. I flew down one day, had surgery the next, and flew home the next. It was actually a great experience!

A couple of my symptoms resolved immediately, some have gradually resolved, and a few have worsened, but the ones that have worsened, I think are being caused by something else altogether now. I'm thinking spinal surgery is just around the bend for me. I am VERY grateful for the hyperparathyroid symptoms that have resolved! I'm very happy I had the surgery.

Again, glad to meet you!

Audrey

Welcome to the forum , sorry but I am not so young either. There have been plenty of younger people that have hyperparathyroid. I'm from California, who is doing your surgery in Texas. I am still pre op. I'm sure your surgery will resolve a lot of your symptoms. It has for so many. Let us know when your surgery is.

Kathi

First,

First, I have to say, thank you all so much for the very warm welcomes. I nearly cried with relief when I read all of y’all’s responses! It truly is incredible to find others who know and understand the symptoms I am dealing with. Things are okay most days, but I often feel that I can never “predict” how I will feel throughout the day. My largest symptoms have been fatigue (especially in my legs), but I do occasionally feel spurts of anxiety, and my stomach/abdomen just doesn’t feel 100% (luckily, no nausea). If the Vitamin D supplements are indeed not helping a bunch, I may look into seeing I can decrease my intake to just 1000iu/day. My stomach is incredibly sensitive to begin with, much less without all the extra iron and Vitamin D…

I have my surgery scheduled for February 17^th, and I believe they will keep me overnight to monitor my PTH/Calcium/etc levels and to ensure that blood is draining properly. (Kathi209, my surgeon’s name is Teresa Kroeker – she has been incredibly understanding of my concerns and has encouraged me to contact her in the weeks leading up to my surgery day if I have questions, etc). I’m crossing my fingers that I will feel much better after my surgery – I can’t wait to start feeling better. 

Thank you all for the warm welcomes and kind words of encouragement. I'm starting to feel a bit less anxious and worried about it all. 

Hi lovelydark

Glad your surgery is just around the corner. I do know what you mean about tummy troubles, I do have the nausea off and on. I know iron can be hard on the stomach, I take 2000 iu of D but my stomach gets upset weather I take it or not. I think that is normal to feel anxious with surgery coming up, but hyperP causes anxiety also. sigh  I am sure you will do fine.  Best wishes Kathi

Hi , originally diagnosed with hyperparathyroidism just over 4 years ago and joined the forum then. I found everyone very helpful & on seeing the consultant had really negative experience . After 2 years they discharged me saying my blood results did not show a raised calcium level & put it down to not releasing tournaquet on taking blood which can give faulty readings. After asking for a blood test at a check up , guess what I have an increased calcium level . Exactly same reading as 4 years ago , only difference this time is my vit D levels are in normal range but that's cos I've been taking vit D since original diagnosis , had my 2 nd blood test today & am awaiting result , I feel it's here we go again but this time I will fight harder , I recognise some of the names on here , will keep you posted x. Just found my original posts under Molly53 , interesting to refer back and will def use for reference when I go back to docs .

Hi Molly
Welcome back, but sorry you had to find us again!
It can be a long road for some of us. It took me two years to get an expert diagnosis and then surgery.
Let us know how your newest tests look when you get the results, and tell us where you are located so we can recommend a useful endo or surgeon for you to get their expert view of your situation.
Best of Wishes, Tigerlily.