Has anyone had parathyroid surgery?

[Demon]

If anyone has had this done, I'd love to hear about changes you noticed after the surgery, any complications, etc.

 

[Mrs_Strizzle]

I haven't personally, but worked in endocrinology for 11 years and had lots of patients who had as well as patients that we monitored because for whatever reason were not candidates for surgery.

I wish you good luck!

 

[Demon]

I haven't personally, but worked in endocrinology for 11 years and had lots of patients who had as well as patients that we monitored because for whatever reason were not candidates for surgery.

I wish you good luck!

Thanks. They've been 'looking' at my numbers for the better part of 7 years, and I finally found an endocrinologist who decided I was a candidate for surgery. It would have been nice if they'd decided that before I developed osteoporosis in my left forearm, but at least it was before it included my hips. I'm very excited to have it done.

 

[Mrs_Strizzle]

Lots of patients would tell me after surgery (once healed) they didn't realize how bad they felt until they felt "normal" post-op. I had the sweetest 87 yo pt who couldn't have surgery and was so dizzy she could hardly walk. It broke my heart. Glad you are getting yours taken care of!

 

[Demon]

Lots of patients would tell me after surgery (once healed) they didn't realize how bad they felt until they felt "normal" post-op. I had the sweetest 87 yo pt who couldn't have surgery and was so dizzy she could hardly walk. It broke my heart. Glad you are getting yours taken care of!

Poor woman. They seem to be so reluctant to do these surgeries (I know they can be hard to diagnose - I've practically been living at parathyroid.com lol) but I feel so bad for that patient.

Thanks for the good wishes!

 

[Calliecake]

I don’t have anything to contribute on this @Demon but am sending healthy dust your way.

 

[Snowdrop13]

Having seen some parathyroid surgery it looks relatively straightforward- the gland is located preop with scans so location is simple. The op takes about 40 mins.

 

[missy]

Yes, we have experience with parathyroid surgery. My husband had half a parathyroid removed (and had a total thyroidectomy (thyroid cancer) in January 2021. I was the one who diagnosed him. I knew he had primary hyperparathyroidism but it was an uphill battle with our endocrinologist. Our endocrinologist kept saying no, he is fine. Unreal. So I brought him to see two of the top parathyroid specialists and they both agreed he had primary HPT. And they found thyroid cancer coincidentally at the same time.

He had the operation at Lenox Hill hospital in NYC. They removed his thyroid at the same time as doing the parathyroidectomy. I dropped him off at 6AM (wouldn't let me stay due to Covid) and I picked him up at 10PM. The operation was at least a few hours and I was on pins and needles waiting to hear from the surgeon.

Greg was supposed to stay the night but the surgeon called me and due to Covid they wanted him to go home as soon as possible so I picked him up. It was a tough few days. He was in pain from the intubation (and he has a high threshold for pain and never complains). So much so he would not eat or drink. I called the surgeon (he gave us his mobile) on Sunday morning and he spoke to my husband telling him he had to drink at least... long story short he started feeling better a few days later.

His 30 year history of kidney stones has ceased (so far). Only half a parathyroid was removed and I would have preferred the whole parathyroid be removed but hoping the surgeon knew what was best to do.

He had no complications from the surgery. His voice was fine from the get go. The key is to find the top surgeon who does this all day long. Not someone who does it a handful of times per year but rather many times per week.

@Demon sending you bucketloads of healing dust and gentle hugs. You will feel so much better when this is behind you.

 

[Demon]

I don’t have anything to contribute on this @Demon but am sending healthy dust your way.

Thanks Callie! There are so many things that a bad gland can affect - bone calcium, blood sugar, heartburn, reflux, energy, that I'm hoping to see some changes after its out.

 

[Demon]

Having seen some parathyroid surgery it looks relatively straightforward- the gland is located preop with scans so location is simple. The op takes about 40 mins.

Yeah, minimally invasive, short time - which is why i find it frustrating that so many doctors seem reluctant to schedule these surgeries.

 

[Demon]

Yes, we have experience with parathyroid surgery. My husband had half a parathyroid removed (and had a total thyroidectomy (thyroid cancer) in January 2021. I was the one who diagnosed him. I knew he had primary hyperparathyroidism but it was an uphill battle with our endocrinologist. Our endocrinologist kept saying no, he is fine. Unreal. So I brought him to see two of the top parathyroid specialists and they both agreed he had primary HPT. And they found thyroid cancer coincidentally at the same time.

He had the operation at Lenox Hill hospital in NYC. They removed his thyroid at the same time as doing the parathyroidectomy. I dropped him off at 6AM (wouldn't let me stay due to Covid) and I picked him up at 10PM. The operation was at least a few hours and I was on pins and needles waiting to hear from the surgeon.

Greg was supposed to stay the night but the surgeon called me and due to Covid they wanted him to go home as soon as possible so I picked him up. It was a tough few days. He was in pain from the intubation (and he has a high threshold for pain and never complains). So much so he would not eat or drink. I called the surgeon (he gave us his mobile) on Sunday morning and he spoke to my husband telling him he had to drink at least... long story short he started feeling better a few days later.

His 30 year history of kidney stones has ceased (so far). Only half a parathyroid was removed and I would have preferred the whole parathyroid be removed but hoping the surgeon knew what was best to do.

He had no complications from the surgery. His voice was fine from the get go. The key is to find the top surgeon who does this all day long. Not someone who does it a handful of times per year but rather many times per week.

@Demon sending you bucketloads of healing dust and gentle hugs. You will feel so much better when this is behind you.

Thank you so much Missy! I've been so incredibly frustrated by this (not so much any symptoms, but getting it recognized) and its wonderful to find someone who understands it.

Oh the thyroid cancer is awful, but a good thing it was found! I trust he is doing well now? Kudos for diagnosing it. (I did the same with my ovarian tumor years ago. Well, me and the dermatologists that sent me for a blood test. But they hadn't told me what they suspected yet.)

It is so very frustrating why the doctors act the way they do on this. I just don't get it. After finally finding this doctor who agrees I need the surgery (the last one wanted me to have infusions of fosamax or one of the drugs for my osteoporosis), I really started looking into it, and going back over test results from years ago. I broke my ankle in 2015 and they checked my vitamin D which was at 19. That level and my 10.6 calcium, next time they checked, should have told them right then that it was a parathyroid. But all I ever got was 'well it could be your parathyroids. We'll keep an eye on it.' In the meantime I develop osteoporosis in my left forearm only, which is yet another sign - osteoporosis in one place only. And you know what finally got me referred to this specialist? Telling my doctor that my sister has just had 2 glands removed. Not my symptoms over the years, alone. They test your PTH levels during surgery to make sure they remove all they need to.

 

[missy]

Thank you so much Missy! I've been so incredibly frustrated by this (not so much any symptoms, but getting it recognized) and its wonderful to find someone who understands it.

Oh the thyroid cancer is awful, but a good thing it was found! I trust he is doing well now? Kudos for diagnosing it. (I did the same with my ovarian tumor years ago. Well, me and the dermatologists that sent me for a blood test. But they hadn't told me what they suspected yet.)

It is so very frustrating why the doctors act the way they do on this. I just don't get it. After finally finding this doctor who agrees I need the surgery (the last one wanted me to have infusions of fosamax or one of the drugs for my osteoporosis), I really started looking into it, and going back over test results from years ago. I broke my ankle in 2015 and they checked my vitamin D which was at 19. That level and my 10.6 calcium, next time they checked, should have told them right then that it was a parathyroid. But all I ever got was 'well it could be your parathyroids. We'll keep an eye on it.' In the meantime I develop osteoporosis in my left forearm only, which is yet another sign - osteoporosis in one place only. And you know what finally got me referred to this specialist? Telling my doctor that my sister has just had 2 glands removed. Not my symptoms over the years, alone. They test your PTH levels during surgery to make sure they remove all they need to.

Completely agree with everything you have written. It was frustrating to the max. If you fall outside the box in any way shape or form the doctors dismiss you. It was a huge uphill battle but I knew he had HPT and I knew damage was being done.

I am sorry you also experienced a similar situation but glad your persistence paid off and you found someone to help you. Greg probably had this for decades and he does have damage to his cortical bone. We are hoping it will improve and it does take time. We are monitoring him and hoping for the best. He is doing fine thanks for asking but yeah I am concerned about the damage done and hope healing will take place. I am so sorry it took a long time for you too to get the correct diagnosis. I could write a book about this lol.

Not all surgeons test PTH levels during surgery because it keeps you under for longer and is not accurate anyway. I personally am under the care of a PTH specialist (Deva Boone MD) due to my secondary HPT and both she and Greg's surgeon do not feel monitoring PTH should be done during surgery for those two reasons.

And yeah that calcium level should have made your diagnosis much easier.
Wishing you a very successful surgery and quick and full recovery.
If there is anything I can do please do not hesitate to ask. I feel like I am a PTH expert.

Good Luck!!!!

 

[Demon]

Completely agree with everything you have written. It was frustrating to the max. If you fall outside the box in any way shape or form the doctors dismiss you. It was a huge uphill battle but I knew he had HPT and I knew damage was being done.

I am sorry you also experienced a similar situation but glad your persistence paid off and you found someone to help you. Greg probably had this for decades and he does have damage to his cortical bone. We are hoping it will improve and it does take time. We are monitoring him and hoping for the best. He is doing fine thanks for asking but yeah I am concerned about the damage done and hope healing will take place. I am so sorry it took a long time for you too to get the correct diagnosis. I could write a book about this lol.

Not all surgeons test PTH levels during surgery because it keeps you under for longer and is not accurate anyway. I personally am under the care of a PTH specialist (Deva Boone MD) due to my secondary HPT and both she and Greg's surgeon do not feel monitoring PTH should be done during surgery for those two reasons.

And yeah that calcium level should have made your diagnosis much easier.
Wishing you a very successful surgery and quick and full recovery.
If there is anything I can do please do not hesitate to ask. I feel like I am a PTH expert.

Good Luck!!!!

I feel like you are a PTH expert too, lol. I have been reading a lot at parathyroid.com, and there's a quote there from a Dr Boone that says if you have low vitamin D and high calcium, you have hyperparathyroidism. Period. Nothing about your calcium having to be high and your PTH being high, and lets do more testing in a year or so. I wonder if its the same Dr Boone. And the website (the owner is a parathyroid surgeon in Tampa) says that if your calcium is high and you don't have hyperparathyroidism, your PTH should be 20 or less. I'm not sure my PTH was ever that low.

I just want to send all that info to every endocrinologist and bone specialist in the country and scream 'what are you waiting for'. (Its nice to be able to vent to someone who gets it!)

Bone calcium is supposed to increase over time, according to that website, but I don't know if it every fully gets back to normal.

Thanks for your help. I go for a pre-op visit on the 23rd so I'm writing down everything I can think of to ask, because I know I'll forget if I don't.

 

[missy]

I feel like you are a PTH expert too, lol. I have been reading a lot at parathyroid.com, and there's a quote there from a Dr Boone that says if you have low vitamin D and high calcium, you have hyperparathyroidism. Period. Nothing about your calcium having to be high and your PTH being high, and lets do more testing in a year or so. I wonder if its the same Dr Boone. And the website (the owner is a parathyroid surgeon in Tampa) says that if your calcium is high and you don't have hyperparathyroidism, your PTH should be 20 or less. I'm not sure my PTH was ever that low.

I just want to send all that info to every endocrinologist and bone specialist in the country and scream 'what are you waiting for'. (Its nice to be able to vent to someone who gets it!)

Bone calcium is supposed to increase over time, according to that website, but I don't know if it every fully gets back to normal.

Thanks for your help. I go for a pre-op visit on the 23rd so I'm writing down everything I can think of to ask, because I know I'll forget if I don't.

Yes. That’s my Dr Boone. She rocks
She’s also super nice. And has
videos on her FB page all about everything you ever wanted to know about hyperparathyroidism. Check them out if you haven’t already.

https://m.facebook.com/southwestparathyroid/

 

[Demon]

I haven't seen them yet - I'm not on facebook,, and so often you have to log in (not for those though) that it isn't someplace I usually go for info. But I will check them out. Thanks, again.

 

[LilAlex]

there's a quote there from a Dr Boone that says if you have low vitamin D and high calcium, you have hyperparathyroidism. Period

I don't know Dr. Boone but this is completely inaccurate. Dr. Boone has evidently never heard of cancer. No one who is knowledgeable about bone and mineral metabolism would make this statement. Half the country has low Vitamin D. Not all experts even agree on the threshold for "low" Vit D. Aggressive Vit D supplementation through well-intentioned but overzealous repletion has led to a lot of hypercalcemia.

One can have hyperpara and a normal calcium -- or a labile calcium that is not noticeably elevated when it is measured. Measured blood calcium is influenced by a lot of different things. You can have high calcium with a "normal" total blood calcium (what is usually measured) if, for example, the albumin level is low in your blood (e.g., you are chronically ill and/or not well-nourished). Usually an ionized calcium is run -- and most labs will not even do this since it requires special handling -- to confirm that an elevated calcium is potentially meaningful.

Hyperpara is tough. I understand why there is little enthusiasm for rushing to surgery. The glands are small and hard to find and can be in unexpected places -- even outside the neck -- and there can be more than or less than the expected four. The surgery "process" can cause significant side effects as can removing too much or too little parathyroid tissue. There are tricks to try to minimize the risk of over- or undershooting with tissue removal -- freeze some of the tissue (and cross your fingers) or implant some in a more surgically-accessible site (like the forearm) in case future fine-tuning is needed. It is not easy stuff.

The biochemical test for PTH does not tell the whole "clinical" story. There are a number of different things that cause hyperpara -- kidney failure is totally different from an adenoma, etc. A slightly elevated level that is metastable is usually "treated expectantly." If you have stones and a lot of bone loss, that's a different matter and is a decent "bioassay" for clinically significant hyperpara.

@missy says some helpful things above. Go to the best endocrine surgeon or ENT specializing in parathyroid and thyroid surgery at an academic medical center (= medical school) in the major metro area near you.

 

[missy]

I don't know Dr. Boone but this is completely inaccurate. Dr. Boone has evidently never heard of cancer. No one who is knowledgeable about bone and mineral metabolism would make this statement. Half the country has low Vitamin D. Not all experts even agree on the threshold for "low" Vit D. Aggressive Vit D supplementation through well-intentioned but overzealous repletion has led to a lot of hypercalcemia.

One can have hyperpara and a normal calcium -- or a labile calcium that is not noticeably elevated when it is measured. Measured blood calcium is influenced by a lot of different things. You can have high calcium with a "normal" total blood calcium (what is usually measured) if, for example, the albumin level is low in your blood (e.g., you are chronically ill and/or not well-nourished). Usually an ionized calcium is run -- and most labs will not even do this since it requires special handling -- to confirm that an elevated calcium is potentially meaningful.

Hyperpara is tough. I understand why there is little enthusiasm for rushing to surgery. The glands are small and hard to find and can be in unexpected places -- even outside the neck -- and there can be more than or less than the expected four. The surgery "process" can cause significant side effects as can removing too much or too little parathyroid tissue. There are tricks to try to minimize the risk of over- or undershooting with tissue removal -- freeze some of the tissue (and cross your fingers) or implant some in a more surgically-accessible site (like the forearm) in case future fine-tuning is needed. It is not easy stuff.

The biochemical test for PTH does not tell the whole "clinical" story. There are a number of different things that cause hyperpara -- kidney failure is totally different from an adenoma, etc. A slightly elevated level that is metastable is usually "treated expectantly." If you have stones and a lot of bone loss, that's a different matter and is a decent "bioassay" for clinically significant hyperpara.

@missy says some helpful things above. Go to the best endocrine surgeon or ENT specializing in parathyroid and thyroid surgery at an academic medical center (= medical school) in the major metro area near you.

Absolutely correct @LilAlex. I have never heard her say that statement and I have a feeling it might be out of context. If @Demon wants to check out her webinars on her website I think this misstatement will be cleared up about D and Calcium. Dr Boone is someone I trust and I do not say that lightly. After many misdiagnoses (for me) she basically saved my bone health.

But I will add no person/specialist/doctor is perfect and always do your own research and advocate for yourself. I always knew this but it really came to fruition in 2020 and 2021. I was battling our doctors left and right to save my husband's life. Not being dramatic. It was the truth. We cannot rely 100% on any doctor and must always learn as much as possible about what we are dealing with and advocate for ourselves. No matter how knowledgeable the specialist is who we are seeing.

I will add one thing. The days are gone of one doctor doing it all. Personally I have many complex issues happening and I must see so many different specialists. Most of them look at us as pieces vs a whole person and even when those specialists who are great look at us as a whole person their knowledge base is limited to their expertise and field of knowledge so it can be quite the puzzle. One we must be in charge of and that isn't always easy as our knowledge base is also limited. But my motto is one day at a time and when that gets to be too much one hour at a time. And never give up. Perseverance, persistence and patience. Do the best you can and keep on going.

 

[Demon]

I don't know Dr. Boone but this is completely inaccurate. Dr. Boone has evidently never heard of cancer. No one who is knowledgeable about bone and mineral metabolism would make this statement. Half the country has low Vitamin D. Not all experts even agree on the threshold for "low" Vit D. Aggressive Vit D supplementation through well-intentioned but overzealous repletion has led to a lot of hypercalcemia.

One can have hyperpara and a normal calcium -- or a labile calcium that is not noticeably elevated when it is measured. Measured blood calcium is influenced by a lot of different things. You can have high calcium with a "normal" total blood calcium (what is usually measured) if, for example, the albumin level is low in your blood (e.g., you are chronically ill and/or not well-nourished). Usually an ionized calcium is run -- and most labs will not even do this since it requires special handling -- to confirm that an elevated calcium is potentially meaningful.

Hyperpara is tough. I understand why there is little enthusiasm for rushing to surgery. The glands are small and hard to find and can be in unexpected places -- even outside the neck -- and there can be more than or less than the expected four. The surgery "process" can cause significant side effects as can removing too much or too little parathyroid tissue. There are tricks to try to minimize the risk of over- or undershooting with tissue removal -- freeze some of the tissue (and cross your fingers) or implant some in a more surgically-accessible site (like the forearm) in case future fine-tuning is needed. It is not easy stuff.

The biochemical test for PTH does not tell the whole "clinical" story. There are a number of different things that cause hyperpara -- kidney failure is totally different from an adenoma, etc. A slightly elevated level that is metastable is usually "treated expectantly." If you have stones and a lot of bone loss, that's a different matter and is a decent "bioassay" for clinically significant hyperpara.

@missy says some helpful things above. Go to the best endocrine surgeon or ENT specializing in parathyroid and thyroid surgery at an academic medical center (= medical school) in the major metro area near you.

Oh I don't claim to be an expert. I'm just reading up and learning. I've spent most of my time at parathyroid.com (the website owner is a parathyroid specialist and a surgeon at Tampa's hospital for endocrine surgery) This is just one of the many things I've found

"Here is the most important fact on this page: since vitamin D is required for humans to absorb calcium in their intestines, a low vitamin D cannot ever be the cause of high blood calcium. This fact is not debatable. Thus, if you have a low vitamin D and your calcium is above 10.0, then the high calcium in your blood must have come from somewhere else other than your diet (it came from your bones). Thus, if you have a low vitamin D, and a calcium level above 10.1, then you are almost guaranteed to have primary hyperparathyroidism and need surgery to remove the parathyroid tumor. A low vitamin D cannot ever be the cause of high blood calcium. Keep reading, because most doctors get confused between the yellow and the blue blobs."

And this is the part I pulled from it for my own purpose in trying to understand this: "Thus, if you have a low vitamin D, and a calcium level above 10.1, then you are almost guaranteed to have primary hyperparathyroidism and need surgery to remove the parathyroid tumor. "

https://www.parathyroid.com/low-vitamin-d.htm

The quote from Dr Boone was highly likely to be out of context - but Dr Norman was quoting her, as a specialist. I'll try to find the quote (It was just a quote bubble), but its a huge website and will likely take some time.

 

[Demon]

Absolutely correct @LilAlex. I have never heard her say that statement and I have a feeling it might be out of context. If @Demon wants to check out her webinars on her website I think this misstatement will be cleared up about D and Calcium. Dr Boone is someone I trust and I do not say that lightly. After many misdiagnoses (for me) she basically saved my bone health.

But I will add no person/specialist/doctor is perfect and always do your own research and advocate for yourself. I always knew this but it really came to fruition in 2020 and 2021. I was battling our doctors left and right to save my husband's life. Not being dramatic. It was the truth. We cannot rely 100% on any doctor and must always learn as much as possible about what we are dealing with and advocate for ourselves. No matter how knowledgeable the specialist is who we are seeing.

I will add one thing. The days are gone of one doctor doing it all. Personally I have many complex issues happening and I must see so many different specialists. Most of them look at us as pieces vs a whole person and even when those specialists who are great look at us as a whole person their knowledge base is limited to their expertise and field of knowledge so it can be quite the puzzle. One we must be in charge of and that isn't always easy as our knowledge base is also limited. But my motto is one day at a time and when that gets to be too much one hour at a time. And never give up. Perseverance, persistence and patience. Do the best you can and keep on going.

I'll try to find the quote, but I'm sure it was out of context (see my reply to @LilAlex) and possibly Dr Norman quoted it to uphold his point of view? I don't know. Like I told LilAlex, he was quoting her as an expert, but it was just a 'quote bubble'.

I do plan on watching at least some of Dr Boones videos. Its all very interesting.

 

[missy]

I'll try to find the quote, but I'm sure it was out of context (see my reply to @LilAlex) and possibly Dr Norman quoted it to uphold his point of view? I don't know. Like I told LilAlex, he was quoting her as an expert, but it was just a 'quote bubble'.

I do plan on watching at least some of Dr Boones videos. Its all very interesting.

Her webinars are excellent. I hope you enjoy them and find them to be helpful.

 

[Demon]

Her webinars are excellent. I hope you enjoy them and find them to be helpful.

I'm sure I will. I have not been able to find that quote from Dr Boone, ( @LilAlex ) but I know I saw it somewhere because that's how I became aware of Dr Boone! 90% sure I saw it somewhere on parathyroid.com, possibly in one of the many highlighted links or blogs, but I have been reading elsewhere, as well...

 

[Demon]

@missy @LilAlex

I found the quote. I had remembered it a little incorrectly in that she wasn't as adamant as I had thought I remembered - she said 'they probably have a parathyroid tumor'. I mistakenly remembered it as a definite.

"I tell everyone to check their calcium levels before starting Vitamin D. If the calcium is high, and the Vitamin D is low, they probably have a parathyroid tumor. They need an operation, not supplements."
- Dr. Boone

Vitamin D and Calcium

Understanding why Vitamin D deficiency is common in patients with primary hyperparathyroidism.

www.southwestparathyroid.com

I thought I'd seen it at parathyroid.com, but it turns out it was on Southwest parathyroid center itself.

 

[missy]

@missy @LilAlex

I found the quote. I had remembered it a little incorrectly in that she wasn't as adamant as I had thought I remembered - she said 'they probably have a parathyroid tumor'. I mistakenly remembered it as a definite.

"I tell everyone to check their calcium levels before starting Vitamin D. If the calcium is high, and the Vitamin D is low, they probably have a parathyroid tumor. They need an operation, not supplements."
- Dr. Boone

Vitamin D and Calcium

Understanding why Vitamin D deficiency is common in patients with primary hyperparathyroidism.

www.southwestparathyroid.com

I thought I'd seen it at parathyroid.com, but it turns out it was on Southwest parathyroid center itself.

I’m glad you found it. She’s very smart. I wish I had found her before my husband had his surgery but it is long distance and was smack dab in the pandemic so I wouldn’t have wanted him to fly there. But I trust her over any other parathyroid specialist we’ve seen. And my husband saw a top doctor in NYC.

 

[Demon]

I’m glad you found it. She’s very smart. I wish I had found her before my husband had his surgery but it is long distance and was smack dab in the pandemic so I wouldn’t have wanted him to fly there. But I trust her over any other parathyroid specialist we’ve seen. And my husband saw a top doctor in NYC.

Yeah, I would love to go to her or to the Tampa hospital, but it really isn't practical, especially when its outpatient. I am watching her videos (I like her) and reading on the Southwest website now. I really do appreciate all your help!

(And I'm so glad I found the quote. It was driving me crazy.)