WHAT ON EARTH IS HYPERPARATHYROIDISM?
If you're like me, you've heard of a thyroid gland and know where it is,
but you're probably not aware that you have four parathyroid glands, each
the size of a grain of rice, that sit behind it. You may also not be aware
that one or more of those glands can get a tumour (adenoma) on it that
probably isn't cancer, but still has far reaching consequences for your body
if left unchecked.
Here's what I learnt when I accidentally discovered I had primary
hyperparathyroidism - and what you might like to get checked sometime in the
not too distant future.....
WHAT ARE PARATHYROID GLANDS?
A quick anatomy lesson - the thyroid gland sits in the front of your neck,
just below your Adam's apple. Behind it are four little parathyroid glands
whose job it is to secrete Parathyroid Hormone (PTH) to regulate the calcium
levels in your blood and bones.
HOW DO YOU KNOW IF THERE'S A PROBLEM WITH YOUR PARATHYROID?
The symptoms of an overactive parathyroid are much the same as the symptoms
we attribute to "getting older" -
fatigue, body aches, difficulty sleeping, bone pain, memory loss, poor
concentration, depression, and headaches. They're mild and they don't cause
us to wonder if we have a medical problem.
Often, it's not even a consideration until things have escalated to the next
level, or until you ask to have your PTH levels checked as part of a routine
blood test.
WHAT CAUSES AN INCREASE IN PARATHRYROID HORMONE?
The most common cause of an increase in PTH is primary hyperthyroidism and a tumour (adenoma) on one of the parathyroid
glands. The tumour is rarely cancerous, but it causes an increase in the
amount of PTH being produced and circulated in your blood. This raises
the calcium level in the blood - by causing bone (where most of our body’s calcium is stored), to release
calcium into the blood - leading to lower bone density and osteoporosis over time. The
increased calcium in the blood gets filtered by the kidneys and can end up
as kidney stones.
Often, high PTH and high blood calcium aren't picked up until years down the
track when osteoporosis shows up in a bone density scan or due to a fall and
bone breakage - then they may recommend a blood test and discover a high PTH
level.
DO YOURSELF A FAVOUR AND HAVE A BLOOD TEST
If there's one big takeaway from my own journey with primary
hyperparathyroidism, it's that a simple blood test can make all the
difference. I asked my doctor to check my thyroid levels (and she included
my parathyroid levels) because I felt a bit tired and wondered if there were
any underlying issues.
The test results showed my thyroid was fine, but I had an elevated
parathyroid hormone level which we then monitored with 6 monthly blood
tests. Normal levels are 1.6 - 9 ..... mine had increased to 15, and then to
24, and my calcium levels also started to increase, while my Vit D levels
decreased - all signs that further investigation was required.
ON TO THE ENDOCRINOLOGIST
The next step was an appointment with an endocrinologist who sent me for a
nuclear medicine scan, a 4D CT scan with contrast, a bone density scan,
another blood test, and a urine test (I felt like a pin cushion!) It was
worth all the scanning because the results showed that I had an adenoma
(tumour) on my lower right parathyroid gland measuring 13mm x 6mm.
.
|
| my neck CT scan showing my adenoma |
There is no medicine to take to fix this, there is nothing you can do to
reverse the PTH levels back to normal and stop the calcium being leached
from your bones....the only cure is to have the offending gland removed. Once it's gone, everything reverts to normal and your blood and bone calcium levels return to their pre-tumour, healthy readings. The
endocrinologist said that at my age (61) and with my elevated levels of
PTH and calcium, it would be in my best interests for him to refer me to
a surgeon who specializes in endocrine surgery.
STAY TUNED AND MY RECOMMENDATION
I have an appointment with the surgeon booked for two weeks' time and he
will give me the information I need to proceed with getting this little time
bomb out of my neck. I'll do an update when I've had the surgery - with a
few pictures I'm sure.
I hope you haven't been bored to death reading this, but I know how
absolutely ignorant I was about what a parathyroid was, what it did, and the
long term consequences of an undiagnosed adenoma. By simply adding a request
for testing PTH into a routine blood test form, I've saved myself the pain
of kidney stones, and the probability of osteoporosis and fragile bones in
the years ahead. I'd strongly recommend doing this if you're over 50 - it's
such a small thing that can save you a lot of issues down the track.
AN UPDATE AND MY SURGERY
If you'd like to know what the surgeon recommended, and what it's like to have a parathyroidectomy, and also a little on what secondary hyperparathyroidism is.....then click on the link for my post on - What It's Like To Have A Parathyroidectomy.
Disclaimer: I
am not a medical professional nor am I providing
medical guidance. This post should not be taken as specific
health advice, it relates only to my own health and what I’ve found
out about hyperparathyroidism for myself. I advise you to speak
to your own doctor or health professional if you want a professional
opinion in regard to your own health.
SOME EXTRA READING
-
parathyroid.com - an amazing resource
BEFORE YOU GO:
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If you'd like to comment but not here on the blog, feel free to email
me at
leanne.crestingthehill@gmail.com - I'd love to hear from you.
And please share this post by clicking on a share button before you
go.
Hi Leanne - I hope and pray everything goes well and the problem is sorted out. Get well soon!
ReplyDeleteBy the way, I also have a problem with the thyroid gland. But it's different, I think.
During one of my routine blood tests, it was found that my TSH (Thyroid Stimulating Hormone) figure was high.
Apparently, that's because my thyroid gland isn't producing enough thyroid hormone which is essential for good metabolism. So, the pituitary gland secretes more TSH to prompt the thyroid gland to secrete adequate thyroid hormone.
This is a condition called hypothyroidism.
There are half a dozen reasons for this. All except 'auto-immune' were ruled out.
Now I take a small dose of a tablet so that the thyroid gland functions normally.
Hi Pradeep - interesting to see that you've had a similiar issue that's been picked up the same way mine was. I'm glad you can take a tablet for it - with mine the only option is surgery to remove the gland. I hope your tablet keeps working, or we'll be comparing scars one day!
DeleteI never knew this! Thanks for posting this Leanne...and here's hoping all goes well for you and the problem is sorted... x
ReplyDeleteHi Jo - I knew absolutely nothing about all this until the doctor threw around a few words and I went down the Google rabbit hole. It's actually quite serious if it runs its course long term - and quite simple to rectify if you don't mind being cut open. I figure after my hip op, any surgery is going to be less onerous - this is small potatoes :)
DeleteI've never heard of it either. Thank you for sharing this. I hope all goes well for you. Maria
ReplyDeleteHi Maria - that's why I decided to do a post on it. I wasn't sure that writing about it would be all that interesting for others, but if I save one person from osteoporosis down the track (or from kidney stones) then it was worth sharing.
DeleteLeanne - My best wishes for success and health in getting this problem taken care of. And thank you for sharing this information with us. We all appreciate learning something we would have never known about. I will approach my doctor about this. I am being treated for osteoporosis, and at 68 deal with fatigue and bouts of being down. But I really do not know if any blood tests were run to check the PTH levels. Thank you again!
ReplyDeleteHi Kristine - my friend mentioned that her mother (who is 80-is) had similar symptoms as yours and it turned out she had THREE tumours to be removed. As soon as they're gone the PTH goes back to normal and the bones actually get stronger. It's certainly worth a little blood test to rule it out or to confirm it. You'll have to let me know the outcome. The links at the bottom of the post were helpful so I didn't feel so in the dark about it all.
DeleteI hope all goes well with the Surgeon but it's good that you caught it early!
ReplyDeleteHi Jo - I'm relieved that it was found too - and that it showed up in the scan (sometimes they don't). I'm assuming it will be a fairly easy surgery (fingers crossed) and a lot easier to recover from than my hip was!
DeleteHi Leanne, thank you for this post as I was not aware either. Good luck with the surgery.,
ReplyDeleteThanks Elizabeth - I figured it's good to share any knowledge that might be helpful to others at the same age and stage. I had no idea and it's something that can easily slip under everyone's radar.
DeleteHi Leanne, this just goes to show that we don't know just how much we don't know. I would never think to ask my doctor to include PTH as a part of a blood test or thyroid check. Will definitely do next visit. I'm glad you got on top of this and are scheduled for a consult and possible surgery. Best wishes.
ReplyDeleteHi Suzanne - I was completely ignorant of all this thyroid/parathyroid stuff - and the endocrinologist was absolutely useless as far as explanations went. I ended up going down the Google rabbit hole to try to figure out what it all meant and what my options were. He just asked me "what would you like to do?" and I wanted to say "that's what I'm her paying $300 to find out!" Once I saw that surgery was the only solution, it was an easy decision to make - and so much better than finding out 10 years down the track when I got diagnosed with osteoporosis. I think it should just be part of regular blood checks for anyone over 50 - a great preventative measure.
DeleteMy mother always reminds me to get my thyroid checked when I'm having blood tests and I presume this is one of the reasons why. I do hope you get it all sorted quickly Leanne and wish you well. You definitely didn't need this, especially so soon after your hip! Thanks for sharing this information with us.
ReplyDeleteHi Deb - your mum is a wise woman. I just randomly asked about getting my thyroid levels checked and the parathyroid got thrown into the mix. A random request that gave me unexpected results - not quite what I'd hoped for (esp so soon after the hip) but so good to have discovered earlier rather than later.
DeleteI hope this gets sorted soon, Leanne. I know it must be worrying for you and the family. Thank you for sharing this important information. Will be sure to share it with others too and take a test myself. ♥
ReplyDeleteHi Corinne - it's not a huge thing, but you're right, it is a little concerning and I'll be glad ot have it sorted. Knowing something in your neck is ticking away and messing with your blood and bones is definitely not ideal.
DeleteOh, how frustrating for you! But it's always good to know what the problem is and that it can be (somewhat) easily fixed. Hope you get it over with soon.
ReplyDeleteHi Susanne - that's what I'm thinking - good to have found out early, good that I can have it sorted out without having to travel to the city, and good when it's out and my body can get back to functioning correctly. I'll be glad when it's done and dusted.
DeleteHoly hell! I gave all of those symptoms. Mine is called “fibromyalgia.” And now you’re making me wonder if it’s a misdiagnosis. I’ll be asking to have this checked at my next visit. Thank you for sharing this.
ReplyDeleteHi Michelle - for the sake of having a simple blood test, it's definitely worth finding out if your PTH and calcium are in normal range. Someone else mentioned on my FB page that you should have your ALP levels checked too because they can give you similar symptoms. The human body is so complex and doctors seem to overlook the simple things when they get caught up in the bigger diagnoses.
DeleteCrossing fingers all goes well.
ReplyDeleteJanet’s Smiles
Thanks Janet - mine are too and I hope it's a straightforward journey that ends fairly quickly.
DeleteHi Leanne. I'm glad the doctors were able to detect the problem with the tests that you had done. I hope that once you've had the surgery, you'll be able to feel good again. Praying for you, dear friend. xx Christina Daggett
ReplyDeleteHi Christina - thanks for your kind wishes. Every prayer is appreciated, and I'm just hoping it's a simple journey from A to B once I see the surgeon. It can't be any worse than my hip op was (fingers crossed!)
DeleteWOw. I hope it's all alright. I had no idea (which doesn't really mean much). I'm amazed how little I know.I am guessing I probably need to do this.
ReplyDeleteHi Lydia - it's not an urgent thing that needs to be dealt with immediately, but if your GP is ever ordering you a blood test, it might be worth getting them to add parathyroid and thyroid levels to the list.
DeleteWe do have so many things in common. I had this surgery a year and a half ago. Discovered my hypercalcemia when I was preparing for surgery on my C5 and C6 vertebra. At the same time, they determined I had Stage 2 chronic kidney disease. Once they got that figured out, I was able to have my neck surgery. But then I had to start going to see a nephrologist and endocrinologist regularly. No one has ever been able to tell me if my kidney disease caused my parathyroid issues or vice versa. Thank you for sharing your journey with us and educating others about these health concerns. Will be interested to see how your appointment goes with the surgeon. Hope your surgery will be as easy as mine was.
ReplyDeleteHi Leslie - I think too much PTH causes too much calcium, as the kidneys have to work extra hard to deal with it - which then leads to further problems. I've heard how painful kidney stones are, and I don't want to find out first hand - and I certainly don't want to have weak bones going into old age! Glad yours is sort-of under control and I hope your endocrinologist is better than the guy I saw (he was dead useless IMHO!) Luckily it's someone else who does the cutting - I wouldn't let him near me with a knife!
DeleteHi Leanne you are certainly becoming a medical professional with all that has been happening to your body over the last few years. Hopefully you will get it sorted as I'm not sure I could keep pronouncing the condition LOL :)
ReplyDeleteHi Sue - I'm finding that you can have lots of things go wrong with your body that you have absolutely no control over. As we age, some things just wear out (or develop) and we just need to get on with dealing with them so we keep our quality of life into the future (and yes, it's a blooming long word isn't it?)
DeleteI am better health educated by reading your post Leanne. I know I have had thyroid tests over the years and all good. Sammie at Annoyed Thyroid knows about the tricks of the thyroid and had thyroid cancer twice. She blogged about it in her early blogging days and that was a model for me when I decided to highlight the head and neck cancer journey. You may not have wanted more 'health' stuff to happen after the hip surgery but going along now with what HAS to be done, and for all the right reasons, you are being a trail blazer for others. I wish you well....So good to read your post and see it in the link up for Wednesday’s Words and Pics. Thank you! Hope to see you next week too. Denyse.
ReplyDeleteHi Denyse - I feel like this is just a little blip on my radar - much smaller than a congenital hip issue and all that came with that journey! Finding it early and dealing with it promptly should give me a much more pleasant prognosis for the years ahead. And it's smaller potatoes than a thyroid issue - so I'm grateful for that!
DeleteHi Leanne, my first time here, thank you for sharing your story. I have the same symptoms, yet "thyroid test" are normal. Yet, never knew to ask for "parathyroid" test. I have nodule that is 8mm x 5mm on my "thyroid" as they tell me, that it is nothing to be concerned with. Although, now that I know what to test request, I will ask them to run the lab test. I am praying for a Great outcome for your situation! God has you in the palm of HIS hand. Jesus said, " I have come that you would have life, and that life abundantly"
ReplyDeleteI'm learning that the thyroid and parathyroids are their own separate entities and impact different parts of the body. A lot of things that we know nothing about can cause the symptoms that we ignore as "getting older" - and in the meantime they're influencing all sorts of things in our system. I'm very grateful I found this before I had kidney stones or bone loss to deal with. My friend had her thyroid removed for Graves Disease and subsequently found out it was in the early stages of cancer - she was VERY relieved to have it gone before she needed major cancer treatment. I wish doctors thought outside the box a little more - or included tests like this that are so simple for those of us over 50. And thanks so much for caring about my outcome. x
DeleteAll the best with your appointment.
ReplyDeleteThanks so much - I'm sure it will all be fine - just a little blimp on the health radar.
DeleteHi Leanne, Thank you for your weekend coffee share. It's good that you are in tune with your body and consult with your doctor when something seems off. Good luck and best wishes to you.
ReplyDeleteThanks Natalie - I think we all need to be more aware of our body and what could go wrong as we age. Nothing stays young forever, and as we get older, so do our various body parts and systems - it's always good to stay on top of things.
DeleteYour post definitely didn't bore me Leanne. I learned lots as I had no idea, other than the thyroid is a gland we have. I'm so pleased you asked to have that blood test. I hope all goes well with the surgeon.
ReplyDeleteThanks Jen - I was hoping that even if people skim through it all, they might get a bit of background info so they know what to look for if they start getting symptoms or a diagnosis of osteoporosis down the track.
DeleteThanks for the informative post! As far as I know, my parathyroids are fine, but I had a benign thyroid tumor removed years ago. The surgery was a breeze as surgeries go - not very painful, quick to heal. I hope yours is too.
ReplyDeleteGood to know Janet - I'm hoping it's a really simple, straighforward op too - I don't need to have a long recovery like my hip replacement was!
DeleteSo interesting Leanne! I didn't know all of this. Hoping it all goes well for you!!
ReplyDeleteThanks Kirstin - it was all new to me too - and I'm amazed that a grain of rice can turn into a jellybean and wreak havoc with the rest of my body! Roll on surgery day!
DeleteI have a Thyroid issue. This is very interesting. Thanks for sharing. Karen #Weekendcoffeeshare
ReplyDeleteHi Karen - the endocrine system is so unknown - not something we're ever taught about, and the symptoms when things go wrong are quite obtuse. I'm glad mine was discovered and is fixable, I hope your thyroid is manageable with medication - surgery is a big step.
DeleteI just received results of blood work indicating that I may have a parathyroid issue. I haven't seen the specialist to confirm, but I remembered that you had posted on this topic. In the meantime, I appreciate the information you shared here. Thanks!
ReplyDeleteHi Christie - welcome to my world! I'm glad you found what I wrote helpful and you'll have to keep me posted on how it all goes. The only cure (if it's hyperparathyroidism) is surgery - we could end up with matching scars!
Delete