Hyperparathyroidism Support Group
Hyperparathyroidism is overactivity of the parathyroid glands resulting in excess production of parathyroid hormone (PTH). Increased PTH consequently leads to increased serum calcium (hypercalcemia) due to 1) increased bone resorption, allowing flow of calcium from bone to blood, 2) reduces renal clearance of calcium, and 3) increases intestinal calcium absorption.
I have had both parathyroids on the left removed. I was told that the ones on the right were enlarged. My calcium levels have been up and down but mostly in the high normal range. My most recent labs say high PTH, borderline calcium(high normal), and vitamin D deficiency. I feel tired and worn out all of the time, get a lot of headaches, am irritable, get bone pain. No kidney stones like the last time though. I have osteopenia and have had kidney stone surgeries in the past.
Do these results mean that my hyperparathyroidism is back again? I know that calcium levels can fluctuate. My doctor needs to set up the referral to my endocrinologist again. I know that if I need a third surgery they said they would remove the parathyroids and put a piece in my forearm. Anyone else have experience with having a third surgery?
I've been taking 1000 iu of vitamin D for a few months. I used to only get blood work every six months but now it's every three months. My endocrinologist wants to wait and see what happens with my numbers. I have lab results from when I lived in DE but my doctors have all of my lab results. I live in Canada now and I don't know how the reference ranges are written.
Do these results mean that my hyperparathyroidism is back again? I know that calcium levels can fluctuate. My doctor needs to set up the referral to my endocrinologist again. I know that if I need a third surgery they said they would remove the parathyroids and put a piece in my forearm. Anyone else have experience with having a third surgery?
I've been taking 1000 iu of vitamin D for a few months. I used to only get blood work every six months but now it's every three months. My endocrinologist wants to wait and see what happens with my numbers. I have lab results from when I lived in DE but my doctors have all of my lab results. I live in Canada now and I don't know how the reference ranges are written.
A person with high blood calcium and a high parathyroid hormone level (PTH) at the same time--must have a bad parathyroid gland.
Some people will have hyperparathyroidism but they will have a high calcium and NORMAL PTH levels.
The blood calcium level will constantly change so if it is high one time and normal another time, you need to be evaluated for a parathyroid tumor especially if you have symptoms of the disease. That is what this disease does period, you cant get any clearer diagnosis than that. sorry if it sounds harsh but just stating fact as i know it. i have had the men1 primary hyperparathyroidism for 30 years and going on my 3rd surgery. BTW i have the parathyroid gland in my forearm and i am concerned about this 3rd surgery and being able to locate the glands. not sure this helps you, but if you have any questions please ask i will help as much as i can. good luck
You cannot, even if you have the funds to pay personally make an appointment to see someone else or have testing done. This is why many Canadians travel to US and pay for diagnostic testing despite already paying high taxes for their existing medical care.
Overall It is a really good system in many ways but this is one of the pitfalls that many people are not aware of.
eng1: You don't sound harsh at all. I know that I still have hyperparathyroidism but my family doctor is just looking at lab ranges. Since my numbers this time haven't been that one point over into high territory she thinks that I'm fine! At least she has me being tested every three months instead of every six.
parachild: You described the Canadian system spot on! It's ridiculous that my family doctor has all of the power! In the US I was always able to call up and get my test results good or bad! It's very frustrating! I can't afford to go to the US for treatment, I wish I could.
You are correct that having your levels tested every 3 months is good and monitoring your condition.
Also have you been referred for bone density testing to assess this? If you have had testing done before then a comparison can be done between your previous scan and present scan to see if you are getting worse.
If you have high blood pressure then often parathyroid surgery can correct this.
Drinking lots of water is the bodies way of helping you rid yourself of excess calcium. People with Primary hyperparathyroidism if they become bed ridden or dehydrated can become very ill because of increasing levels of calcium. Stay active and hydrated.
Bone density scans in the US showed that for a while I had osteoporosis but then my bones build back up a little so it was osteopenia. The bone density scans here showed osteopenia. I asked my doctor for another scan and she said that it was pointless since it takes a while for bones to build back up.
I take two medications for my blood pressure. One of them also helps with my fast heart rate.
I drink all of the time because I'm always thirsty no matter how much I drink. I'm always in the bathroom as a result. I try to stay active. I definitely don't want to be bedridden.
I am concerned that I have hypothyroidism. Before my surgeries I never had any thyroid problems. It's apparently mild though since I'm only on 50mg of synthroid.