The gaslighting in this area is unreal. Disgusting. I had to figure my own diagnosis out and get it confirmed by a surgeon.

@@christicyngier5988 Yep, and unfortunately it cuts the other way, too. Because so many parathyroid patients are older women, it took years for me (33yo male) to get a correct diagnosis. Multiple doctors ignored my high calcium until I did my own research and pushed for a PTH test.

My thyroid numbers were always fine- I had 1 dr check the parathyroid and thank God that he did. I am 43 year old female

Amazing to hear! I have had it since 2017 and have surgery next week. I am praying for mentsl clarity, great memory and the ability to strategise again 🙏

Did anyone have a clogged/ pressure in the ear as a symptom?

​@@heidicarlson9600hi I'm really happy for you. Did you have high calcium? My Dr won't test for parathyroid hormone as my calcium is normal but I've read it can be normal and still have parathyroid issues.

Yes! I’ve had ear congestion and pain for years! I’m constantly sniffing to clear my clogged ears. @@HappyHauntings

How did your consult go? I too, have been diagnosed with an adenoma on my lower left parathyroid, meeting with surgeon this week. My calcium is 11.5, my PTH is 68. My legs constantly ache, some days much worse than others (can barely walk some days), fatigue is severe, constant urination, I'm in my 50's, feeling like 90'ish..... BUT, no kidney stones, thankfully.

@@ggpollack4075 It was good. My surgery is 12/21/23 and I cannot wait to get this thing out of me. My calcium (last checked) was 11.6 and my PTH was 291. I have all of the above in my symptoms. I am 52 and also feel like I am in my 90's most days. Prayers you get in to get the surgery asap.

​@@ggpollack4075I think you have something called normocalcemia or something like that.

How did things go? My consult us feb 21.

@@Nycholletta you be ok is a very quick operation back to normal afterwards

You need the surgery

I had my parathyroid.out...don't be nervous...u feel 100% better the next day ...no pain ..no sore throat...Get it out.

Get the surgery..

I had a lot of symptoms..starting with kidney stones..bone pain..fatigue..heart palpitations. Was a big one...hypertension. 😊

Surgery as soon as possible

Thank you Dr.

Good luck. Insomnia can happen

It’s the same here in America with parathyroid disease. I’ve likely had primary hyperparathyroidism for over 20 years. And it was ME that ended up figuring it out after I was told by multiple drs I was fine.

I'm sorry. God understands all this. Hard to go through. May u have peace.

​@christicyngier5988 same. I noticed my calcium was slightly elevated for years. Dr's always said, "Nothing to worry about" I asked for follow up labs and my PTH is 140. Never would have known if I didn't advocate for myself.

I understand. Sounds like u have had Hyperparathroidism for yrs since you've already had kidney stones already.?I have a tumor on my Parathyroid glands. Dr. Is taking his sweet time setting a surgery date! I've waited for 1 month so far , seems like they really dont care about there patients! We have a condition that can effect our heart, kidneys , etc., to malfunction at any time also shorten our life! May God be with u through this.

I'm from Australia as well. How did you even broach the subject with your Dr? I don't know what to say to get the Dr to test me or give me a referral to an endocrinologist. I feel I've aged 20 years in the last year or so. Everything hurts and all I want to do is sleep, im only 61.

Thanks for your comment. I wish doctors will tell us about natural way of curing sickness

The treatment is surgery because the tumor is the one that makes the gland to withdraw the calcium from your bones that leads to kidney stones, osteoporosis and all other symptoms

WhT are ur symptoms

I started with all kinds of problems at 40. Heart, kidneys,my whole digestive system, lungs. Lupus, SJOGRENS Disease, breast cancer, gall bladder, uterus,teeth, electrical problem with heart ventricular tachycardia! POTS, you can see this is a mess. Now it’s Hyperparathyroidism, had scan. I’ve had high these symptoms since 42! I’m now 71 years old and I’m just being diagnosed!

I just had the parathyroid dye and scan on 2-23-2024. The tech showed me my 1 gland that lit up, so, I’m meeting with my doctor 3-19. Please pray for me?!

Over 10. An endocrinologist uses other blood breakdowns to determine it exact. My calculated to 10.9

It’s because a lot of people never heard of parathyroid. Trust me I was of them until I went and read up what causes elevated calcium levels. Mine has been high since 2021. The last time it was good was 2016. People need to be educated about the difference between thyroid and parathyroid.

How is it now for you, my PTH are fluctuating(129/83/95) and calcium are normal

Why was your recovery so hard? Most people say they felt better immediately.

What is your calcium? @@varungupta9629

Have you been tested for MEN1? That’s what causes my parathyroid hyperplasia. One adenome removed 13 years ago and now the rest except half of one have to go next month.

I understand try to be strong.

Did Prolia cause the problems?

Wow! Sorry to hear that u also have breast cancer. This hyperparathroid is new to me. I'm getting surgery for this and having my breast cked out. I don't have a good feeling about this. How are you handling this? Must be tuff?

10 and over

Over 25

Keep insisting on regular blood tests to check ck your calcium and pth levels if you have the symptoms. I was in a similar position to you.... Vitamin D levels very low and told to take supplements. This eased some of the joint pain but not much. Turns out I had an adenoma on the bottom left gland and had it removed last week. Good luck.

@@jeanetteclayton3841 thank you for your advice! I’m seeing my PCP this upcoming week. My calcium levels are actually inching up. Last check they were at 9. I’m curious to see what they’ll be this time. I spent all day in bed yesterday due to severe body aches, fatigue, and that horrible burning feeling in my legs/torso. I have an order from my nephrologist for a re-check of my PTH levels and Vitamin D. Will ask for calcium from my PCP if that’s not on there, too. I just know that I have a diseased parathyroid gland (without knowing). I have a large kidney stone right now in my left kidney, CKD stage 3A on top of all of this. It’s clearer to me than it is the doctors! I’ve been getting kidney stones for 20+ years! So glad for you that they fixed your issue! Prayers for continued healing! 🙏🏼 ❤️‍🩹

You do not need to see the endocrinologist, you need surgery to remove the tumor that produces all the problems

Mine too, recently had Nuclear Iodine Study and thyroglobulin blood test all point to cancer. I am going to Cancer Institute in 10 days. I am unable to get into Endocrinologist until July 4 months from now! 😢

ONLY SURGERY

Norman Parathyroid Center in Tampa, Florida

Just had a Nuclear Sestambi Scan of Parathyroid have a 1.2 size solid mass! NO ONE BELIEVED ME NO ONE

​@@luchi26100disappointed why only surgery

No -it’s a benign tumor that must be removed. There is no cure other than surgery.

No

You would think by now that would have found a cure other then surgery. But nope it's just surgery.

The surgery is around 20 minutes at Norman Institute under mild sedation. There is no cure for a tumor. I’d rather have it removed than let it keep growing esp since most of us have 2-3 three other back up parathyroids that are tumor-free. Get the diseased gland out that is causing all the debilitating symptoms. Surgery sounds good to me vs the alternative. @@Nycholletta

Thank you. Now what about if the test was not done early in the morning without fasting? My PTH was 112 not fasting. Previously when I was fasting three months ago my PTH was 77 . I’ve been told I have RA. Could my hyper parhyperthyroid b mistaken for RA?

Mine is at 13.2. & hard to go done. Will have surgery soon.

Mine is at 13.2. & hard to go down. Will have surgery soon.

@@delsielopez3073 it doesn't go down on its own ,good luck with the surgery

An endocrinologist appointment is needed, they should order a CT scan for proper assessment.

I would contact the Norman Institute if I were you.

@@znmm2588 I actually finally had surgery Dec 2023. But thank you for your kindness!

Im glad you are doing well and had the surgery! I’m getting my surgery soon. I can’t wait to feel better!@@kristirichards2249

High calcium with normal PTH is a problem. I don’t think internal medica one drs are taught this - scary, considering they are the ones who run the standard tests. It’s also important to adjust the range the lab gives for your age as the range includes levels for kids through adults. I hope you find answers soon. Please continue to pursue the high calcium! It can cause a lot of problems as time goes on.

@@kristirichards2249 How are things now? Going to have to have the surgery soon, so just wondering how it went?

I just found out my PTH is high and I have/ had inner ear pressure and now my balance is effected Drs never found a root cause being that I did not have a physical injury. Maybe it does play a role

The clogging eventually came down but it lingers and it still rings time to time … I can walk fine but I have a swaying sensation all other balance issues were ruled out I had a VEMP test done on my ear and balance so that’s how they know it’s effected but no physical evidence and a year later finding out PTH is high.

Most definitely, yes! I have had severe ear congestion, ear pain, and ringing for years. I am constantly sniffing to clean my clogged ears. I can’t hear well from this happening. My calcium is just over the limit by .1. I’m planning on getting the surgery soon. I’ve been suffering with over a dozen debilitating symptoms with no answers until now. It’s tragic how underdiagnosed and misdiagnosed this disease is.

I've had clogged ears from wax build up forever. If your calcium and pth are high you shouldn't be taking that much calcium.

Has anyone had daily and nightly fevers and night sweats?

You have to keep pushing, it happened to me the scan nor the ultrasound detected the adenoma Dr. Took the chance did the surgery and he found the bad parathyroid took it out no lie in 2 days I felt like myself again in 1 week i felt amazing

Have a Nuclear Iodine Study

Hmmmm what kind of scan. If it’s an ultrasound I would say request a more definitive scan. Ultra sounds are cool but they don’t catch everything

Norman Institute says these scans are usually inaccurate by 50% or more. Check out their website, they explain in detail why. Great info there. I don’t know your age, but if you are over 40, you should be in the 9s. 11 is a clear indicator you have the disease.

Scans are often negative, and most doctors/surgeons experienced with hyperparathyroidism will rely on bloodwork, not scans, for diagnoses. Because of the location of the glands (behind the thyroid) the thyroid often obscures the view of them on an ultrasound or ct. On a sestamibi scan (probablspelled that wong, sorry), the nuclear meds they inject is attracted to the adenomas, but with a small adenoma, multiples, and hyperplasia, the concentration is often harder to see, and the thyroid can obstruct the view of them in that type of scan as well. Typically, a quality surgeon will use those scans not as a diagnostic tool, but as a way to check that the parathyroid glands aren't in any crazy places, as in utero, the glands descend into place and can sometimes descend too low, into the cheat, or not descend, and be stuck under the jaw, so they use the scans to try to rule that out, as well as use the nuclear injection from the septamibi scan in surgery, by using a gamma probe to measure concentrations of that nuclear substance in the glands their looking at. Because it concentrates in overactive glands, the gamma probe will show high levels of it in the hyperactive glands, confirming that those are the "bad" ones that they need to remove, or ensuring, by lack of concentration of the substance when probed, that they don't remove any good glands. In short, never ever rely on a negative scan to say whether you have hyperparathyroidism or not. If a doctor/surgeon is doing that, go to a different doctor. Most scans are negative, but that doesn't mean you don't have the disease, just that they aren't showing up on it. Many places also have lower quality scans or are not as trained in finding the parathyroid glands with them, especially because they can vary in size and location. Though rare, you can also have more or less than four glands depending on how you developed. So definitely go get a second opinion if possible, especially if your levels are abnormal. The only cure at this time is surgery, and the longer you have it the more damage done to your bones and body, which is one of the biggest reasons why the "wait and see" method, where you wait and see if your calcium gets to some specific, high level, is so dangerous. Anyway, sorry for the ramble, but I hope this helped and if you're dealing with this you can get the help you need! It sucks to say the least.

@dudeguy8127 thank you for your indepth reply. It is much appreciated.

​@@dudeguy8127what you are saying is absolutely correct. My surgeon said the exact same. Thank you for making NG this valid point

What is your age?

@@znmm2588 55

Yes

55

Yes especially if all your lab work shows it being elevated all of the time.

Wow! I just discovered I have this. And still waiting weeks for a surgery date?

my teeth never came though they said it was me all my life it was no calcium in my teeth lucky that was all my bones are healthy far as i last checked no processed food fizzy drinks drink as much as i can hot water do not like cold

If you are having bone loss from the disease, then you will have more bone loss in your teeth. It’s called brittle bone disease. Teeth are bone. Do you know your pth and calcium levels?

Yes

Mine hurt so bad I can see thru them

Yes had surgery last week and have had three hours sleep in four days up to now. Endo says this will ease when the calcium levels settle down 😮

Can hyperparathyroidism cause severe scoliosis and kyphosis?

Yes

What are your numbers? Calcium and pth? Bone pain is one of the top 2 symptoms. If you are over 10.0 in calcium, and you are over 40, it’s a most definite yes.

Get a PTH and Nuclear Iodine Study of Parathyroid not just Thyroid