I had very high calcium caused by hyperparathyroidism and would like to weigh in here to say that fatigue and mood changes can sometimes not be mild symptoms at all - I was having extreme exhaustion, depression and brain fog due to the advanced stage of my hyperparathyroidism prior to diagnosis. It's hard having these symptoms waved away by doctors for so long before I finally had a blood calcium test (after having likely had a parathyroid tumour by that point for over 7 years, and an extra parathyroid gland since birth - I was only given this test after moving from the NHS to a private practice at great expense), and I would urge you to please state that while sometimes these symptoms are mild/barely there thanks to early diagnosis, they can also become extreme when diagnosis is left for a long time. Women's pain is often ignored for longer, and as my hyperparathyroidism was also giving me extreme period pain etc this was my first complaint to the doctor. If I had been diagnosed earlier I wouldn't have such low bone density now (as only a 31 year old) , and I could have saved myself years of acute distress which has affected my relationships, work and timeline of life goals. At the least, it's important to have validation of the veracity of these symptoms from medical professionals with a platform such as yourself. (I have no doubt in it myself as when I did get tested by medical professionals, and after my surgery showed the size of the tumour, doctors then confirmed that these extremes can happen as a result of hyperparathyroidism and this confirmation gave me great relief.) Post surgery my fatigue and brain fog lifted almost instantly, as did the constant background depression and muscle/joint/gasstric pain - it's just easier to be happy now. I feel lucky to be where I am now and want to share my experience in the hope that others can get diagnosed sooner (and don't gaslight themselves over difficult to navigate symptoms such as fatigue, depression and brain fog).
@@ajwinter1598 same, always because my thyroid numbers looked perfect, but that doesn't always mean that there isn't a thyroid issue, especially if you have a strong family history of thyroid issues.
I agree. There is a tendency to classify symptoms as mild solely based on lab results. This is so wrong. If you have hyperparathyroidism, there is nothing "MILD" about high calcium affects on the body. Like being pregnant, you can't be mildly pregnant. Just had surgery after 25 yrs of "mild labs & symptoms". Hyperparathyroidism destroys so much in the body: osteoporosis, chronic kidney & urinary issues, bone & joint pain, eye & hearing issues, cardiovascular blockages, digestive malabsorption, etc, etc, etc. Listen to your body & ask for blood calcium, PTH & Vit D labs yearly.
I am looking forward to video discussions on 1) Normocalcemic primary hyperparathyroidism and 2) the role of Vitamin D in the diagnosis of primary hyperparathyroidism. Thank you for educating the lay public on this very important topic.
I have had weird symptoms over the past five years or so. But lately they are worse: fatigue...exercise intolerance, insomnia, rapid heartbeat, hypertension, frequent urination at times, but it is the tiredness that is the worst. I would love for you to do a Part II on other symptoms because I think you only listed the most recognized ones. There are others (from my investigation). Palpitations are another potential symptom. Can hyperparathyroidism be familial? My sister has suspicious parathyroid glands that for now, are only being watched...but she does have symptoms. Endocrinologist doesn't want to do 'anything'.
Why don’t you have blood test? My calcium levels were high. All four of my parathyroids were bad and had to be removed. The surgeon made me a new one and implanted it in my forearm. We are about five weeks out from surgery and trying to get all numbers to jive. I hope to be feeling better soon.
@@sherryrohde6861…..How high were your calcium tests? Mine are going steadily higher, at 10.6 now…..was 10.3 a few months ago. I am soooo tired….but don’t sleep well….I wake up every hour or two having to pee, constantly! I have to try to avoid drinking water as the night goes on (I’m thirsty as hell!)…..but I feel dehydrated otherwise. I have bone aches, and an abdominal pain that the gastroenterologist can’t seem to find a problem for. I have read online that even skin rashes can be attributed to this condition (hyperparathyroidism), and read that one woman’s rash went away after the surgery! I have rashes that NOTHING seems to work on…..not even with dietary changes. I have also read that there are cases where hyperparathyroidism was present along with cases of cysts in the pancreas…..which I was just diagnosed with also! Yet, the FOOLS DON’T DO ANYTHING! This is so frustrating! I just called my family doctor today, to ask him to order a PTH test. His receptionist said that she would pass along the info….and they would get back with me….whatever. Oh, and I have the really bad heart arrhythmias too!
Primary Hyperparathyroidism is easily diagnosed through blood tests and/or 24 hour urine output test. The symptoms you describe could be attributed to various different things or combinations of things/diseases/ conditions. If you want to exclude Primary Hyperparathyroidism, get a blood test and you’ll know whether that’s what’s causing your issues. Good luck
I had (unknowingly) a "wonky" parathyroid that had been 'fluttering' for decades. No one could figure it out, and I was told frequently that "it's your imagination" or "nervous bride". When the bone started leaching into the bloodstream 40 years later, my then doctor finally started paying attention and sent me to a bone specialist, who realized what the problem was, and eventually I had one of the parathyroids removed. Too late to save one kidney, but at least I have a new doctor. Kidney problems, by the way, were never mentioned. The doctors apparently either assumed I had figured this out, or they just didn't bother to mention it. One of the hazards of being female...
Must admit that I had a terrible experience at your office for a second opinion. Was told that surgery wouldn’t help me. Wrong. I had hyperplasia. 3.5 gland removal. Although surgery recovery was brutal and took a year, my life changed dramatically. NO more joint pain as that was the most debilitating symptom I had. Sometimes we don’t fit the mold. Time to do some more research. I had normocalcemic btw.
I had every single other symptom too and was told I had everything from RA to fibromyalgia. It was a nightmare to get diagnosed. Thank you Dr Shaver at Mission Hospital for believing me and doing the surgery. I was near suicidal after suffering with so much. Kidney stones were also horrific.
Very interesting. I have discovered I have a high risk for this, by genetic testing that is after finding my serum Calcium but was the actual opposite, low as I’m aware the parathyroid glands try to regulate the calcium and it may be low because the activity of the parathyroid is high due to an autoimmune process and as you said by excretion of excess calcium requested, but by the overactive parathyroid Gland. I do get bone pain in my back and joints, and right flank pain under my right rib, where the kidney is and albeit having a L5-S1 disco party, this may make sense with everything I’m connecting, and my T3 has been high a few times. I get thirsty and urinate more often (partly as I’m drinking more) very insightful thank you. Excuse me any gramatical errors as I wrote this in a hurry and don’t have my glasses on as I type this.
I had low vitamin D for several years, once I got my vitamin D to 30-35, when I consumed anything with calcium, I started getting nauseated, high feeling, confusion, weakness, excessive urination, bone pain, pain in abdomen, digestive issues, diarreia, headaches. This is at only 400 IU vitamin D. I feel like this isn't high enough, but more makes these symptoms worse. I have type 2 diabetes and I'm able to eat foods that would otherwise help with insulin resistance. My endocrinologist isn't concerned at all and blows me off. I have high normal calcium even with vitamin D deficiency. Every time I take my 400 IU D3, my glands under my neck hurt and swell up.
So they find our gut plays one of the biggest connections to inflammation and vitamin absorption. Speaking from experience and being one who has major malabsorption problems. Here’s an interesting article to read on Vitamin D & inflammation (I already have Hashimoto’s and I had been having swelling bad under my chin for awhile, I stopped my thyroid meds and Vitamin D and the inflammation went away🤷♀️) : www.ncbi.nlm.nih.gov/pmc/articles/PMC4160567/
My moms calcium in the blood is elevated only 0.06, but in her pee it is 15 when it is supposed to be lower than 8. You only talk about the high calcium in the blood though. She does not have osteoporosis nor a low D3. A Choline scan showed that one of her parathyroids is enlarge. Talk about high calcium in the pee too, please.
I’m going through absolute hell my name is Mia. I had a sexual reassignment surgery when I was 18 and I was put on hormones at the age of 14 and bone blocker therapy once a month injection that lasted I think a year I’m now 32 and I noticed that last year I came loads of weight I am a petite person so I was around size UK8 and I went up to a size 16 to 18 my face look bloated I was sweating only on my face And then about 2 1/2 months ago I suddenly woke up with a itch. I couldn’t scratch that sent me to extreme anxiety and panic attack and the next seven days it escalated all nerves going up and down my arm in my armpit I actually climbed out my window to try and jump And then it stops and then I woke up to my eyes been in severe pain from behind and my left eye went blurry for about 20 seconds. I have been to the doctors of times even before any of the severe symptoms happened but I was literally going to the doctors a day with my mum crying they didn’t know what to do. They put me on some anti-inflammatory medication I had to go to and I had to go to emergency hospital, several times so my prolactin was very high and is probably gone up. I started to see tremors in my hands and my thumb would shake. I couldn’t control it and now I’ve noticed my jaw shakes. When they sent to the endocrinology, they sent the referral back saying I needed to be seen under a transgender specialist. I contacted the tower Stockport with an email to the head of enterology saying that I am very suicidal and the normal local endocrinology I’m not helping. I got a call within three days from a lovely woman at the Tavistock. It was about a three hour conversation and she read me the letter from the head Professor saying Mia is not in active transition Meaning I had my surgery and I am just seen as a woman on HRT and it is legal for theology to deny me. They proceeded to talk to me and see how severe my state was then the doctors my local GP called me being so kind and wanted to do so much for me it just made me laugh because they were not giving me any help until my angel guardians Called up and force them to as I have an endocrinology appointment next week also found on ultrasound had a parathyroid nodule which they think this present against the nerves and causing these situations that are happened to me that these problems I don’t know how to describe that I am going through so much my eyes are changing every day meaning the accuracy and sharpness. Sometimes I see double vision and then they go back to normal and then I have a pain itching sensation deep inside my ear. I have tried to combat all of this with working out walking taking my dogs out for hours, meeting with friends pushing myself to go out because I became agoraphobic and I didn’t leave the house for literally two months so my family and my amazing mum and sister Brother support me and made me go out with my mum and the dogs and I’ve lost 2 1/2 stone so that’s a plus I’m not eating any chocolatebut I’m scared and I don’t like having no control in my own body
Is a phosphorus deficiency a symptom of hyperparathyroidism? If so, can some people’s calcium show up normal in bloodwork some of the time with all the other signs and symptoms? I had an ER doctor think I had this already before.
Question. What does it mean if my blood test showed above normal for parathyroid intact but in normal range for calcium and yet I feel the symptoms of fatigue, muscle weakness, aches and pains in my bones?
I had very high calcium caused by hyperparathyroidism and would like to weigh in here to say that fatigue and mood changes can sometimes not be mild symptoms at all - I was having extreme exhaustion, depression and brain fog due to the advanced stage of my hyperparathyroidism prior to diagnosis. It's hard having these symptoms waved away by doctors for so long before I finally had a blood calcium test (after having likely had a parathyroid tumour by that point for over 7 years, and an extra parathyroid gland since birth - I was only given this test after moving from the NHS to a private practice at great expense), and I would urge you to please state that while sometimes these symptoms are mild/barely there thanks to early diagnosis, they can also become extreme when diagnosis is left for a long time. Women's pain is often ignored for longer, and as my hyperparathyroidism was also giving me extreme period pain etc this was my first complaint to the doctor. If I had been diagnosed earlier I wouldn't have such low bone density now (as only a 31 year old) , and I could have saved myself years of acute distress which has affected my relationships, work and timeline of life goals. At the least, it's important to have validation of the veracity of these symptoms from medical professionals with a platform such as yourself. (I have no doubt in it myself as when I did get tested by medical professionals, and after my surgery showed the size of the tumour, doctors then confirmed that these extremes can happen as a result of hyperparathyroidism and this confirmation gave me great relief.)
Post surgery my fatigue and brain fog lifted almost instantly, as did the constant background depression and muscle/joint/gasstric pain - it's just easier to be happy now. I feel lucky to be where I am now and want to share my experience in the hope that others can get diagnosed sooner (and don't gaslight themselves over difficult to navigate symptoms such as fatigue, depression and brain fog).
So glad for your healing and breakthrough ❤️🙌🙏 I pray for restoration in the areas that this disorder has stolen 😀
I have just been referred after 6 years of tests and things being missed. I agree with you completely 💗
@@ajwinter1598 same, always because my thyroid numbers looked perfect, but that doesn't always mean that there isn't a thyroid issue, especially if you have a strong family history of thyroid issues.
I agree. There is a tendency to classify symptoms as mild solely based on lab results. This is so wrong. If you have hyperparathyroidism, there is nothing "MILD" about high calcium affects on the body. Like being pregnant, you can't be mildly pregnant. Just had surgery after 25 yrs of "mild labs & symptoms". Hyperparathyroidism destroys so much in the body: osteoporosis, chronic kidney & urinary issues, bone & joint pain, eye & hearing issues, cardiovascular blockages, digestive malabsorption, etc, etc, etc. Listen to your body & ask for blood calcium, PTH & Vit D labs yearly.
Do you know what the initial cause was? Trauma, disease, diet, environmental exposure to something?
I am looking forward to video discussions on 1) Normocalcemic primary hyperparathyroidism and 2) the role of Vitamin D in the diagnosis of
primary hyperparathyroidism. Thank you for educating the lay public on this very important topic.
I have had weird symptoms over the past five years or so. But lately they are worse: fatigue...exercise intolerance, insomnia, rapid heartbeat, hypertension, frequent urination at times, but it is the tiredness that is the worst. I would love for you to do a Part II on other symptoms because I think you only listed the most recognized ones. There are others (from my investigation). Palpitations are another potential symptom. Can hyperparathyroidism be familial? My sister has suspicious parathyroid glands that for now, are only being watched...but she does have symptoms. Endocrinologist doesn't want to do 'anything'.
Why don’t you have blood test? My calcium levels were high. All four of my parathyroids were bad and had to be removed. The surgeon made me a new one and implanted it in my forearm. We are about five weeks out from surgery and trying to get all numbers to jive. I hope to be feeling better soon.
@@sherryrohde6861…..How high were your calcium tests? Mine are going steadily higher, at 10.6 now…..was 10.3 a few months ago. I am soooo tired….but don’t sleep well….I wake up every hour or two having to pee, constantly! I have to try to avoid drinking water as the night goes on (I’m thirsty as hell!)…..but I feel dehydrated otherwise. I have bone aches, and an abdominal pain that the gastroenterologist can’t seem to find a problem for. I have read online that even skin rashes can be attributed to this condition (hyperparathyroidism), and read that one woman’s rash went away after the surgery! I have rashes that NOTHING seems to work on…..not even with dietary changes.
I have also read that there are cases where hyperparathyroidism was present along with cases of cysts in the pancreas…..which I was just diagnosed with also! Yet, the FOOLS DON’T DO ANYTHING! This is so frustrating!
I just called my family doctor today, to ask him to order a PTH test. His receptionist said that she would pass along the info….and they would get back with me….whatever.
Oh, and I have the really bad heart arrhythmias too!
Primary Hyperparathyroidism is easily diagnosed through blood tests and/or 24 hour urine output test. The symptoms you describe could be attributed to various different things or combinations of things/diseases/ conditions. If you want to exclude Primary Hyperparathyroidism, get a blood test and you’ll know whether that’s what’s causing your issues. Good luck
Yes it can be familial. I have MEN1 syndrome and my sister too. Check it out.
I had (unknowingly) a "wonky" parathyroid that had been 'fluttering' for decades. No one could figure it out, and I was told frequently that "it's your imagination" or "nervous bride". When the bone started leaching into the bloodstream 40 years later, my then doctor finally started paying attention and sent me to a bone specialist, who realized what the problem was, and eventually I had one of the parathyroids removed. Too late to save one kidney, but at least I have a new doctor. Kidney problems, by the way, were never mentioned. The doctors apparently either assumed I had figured this out, or they just didn't bother to mention it.
One of the hazards of being female...
Surgery should always be the very last option; what treatments are there?
Must admit that I had a terrible experience at your office for a second opinion. Was told that surgery wouldn’t help me. Wrong. I had hyperplasia. 3.5 gland removal. Although surgery recovery was brutal and took a year, my life changed dramatically. NO more joint pain as that was the most debilitating symptom I had. Sometimes we don’t fit the mold. Time to do some more research. I had normocalcemic btw.
I had every single other symptom too and was told I had everything from RA to fibromyalgia. It was a nightmare to get diagnosed. Thank you Dr Shaver at Mission Hospital for believing me and doing the surgery. I was near suicidal after suffering with so much. Kidney stones were also horrific.
All ears on this topic.
Noted. And, Thank you, Doc!
Very helpful, ive just had a blood test for this and awaiting results.
Very interesting. I have discovered I have a high risk for this, by genetic testing that is after finding my serum Calcium but was the actual opposite, low as I’m aware the parathyroid glands try to regulate the calcium and it may be low because the activity of the parathyroid is high due to an autoimmune process and as you said by excretion of excess calcium requested, but by the overactive parathyroid Gland. I do get bone pain in my back and joints, and right flank pain under my right rib, where the kidney is and albeit having a L5-S1 disco party, this may make sense with everything I’m connecting, and my T3 has been high a few times. I get thirsty and urinate more often (partly as I’m drinking more) very insightful thank you. Excuse me any gramatical errors as I wrote this in a hurry and don’t have my glasses on as I type this.
If you don't mind me asking, what genetic test did you have done? How much is it? Thanks
I had low vitamin D for several years, once I got my vitamin D to 30-35, when I consumed anything with calcium, I started getting nauseated, high feeling, confusion, weakness, excessive urination, bone pain, pain in abdomen, digestive issues, diarreia, headaches. This is at only 400 IU vitamin D. I feel like this isn't high enough, but more makes these symptoms worse. I have type 2 diabetes and I'm able to eat foods that would otherwise help with insulin resistance. My endocrinologist isn't concerned at all and blows me off. I have high normal calcium even with vitamin D deficiency. Every time I take my 400 IU D3, my glands under my neck hurt and swell up.
So they find our gut plays one of the biggest connections to inflammation and vitamin absorption. Speaking from experience and being one who has major malabsorption problems. Here’s an interesting article to read on Vitamin D & inflammation (I already have Hashimoto’s and I had been having swelling bad under my chin for awhile, I stopped my thyroid meds and Vitamin D and the inflammation went away🤷♀️) : www.ncbi.nlm.nih.gov/pmc/articles/PMC4160567/
Can syptoms come and go during the day?
My moms calcium in the blood is elevated only 0.06, but in her pee it is 15 when it is supposed to be lower than 8. You only talk about the high calcium in the blood though. She does not have osteoporosis nor a low D3. A Choline scan showed that one of her parathyroids is enlarge. Talk about high calcium in the pee too, please.
what's the treatment for this case since it's not tumor is it just cured by medications rather than surgery?
Yeah you don't even have to have high calcium levels to have it, also my symptoms started before I actually saw it on my blood test
That was so informative.
Very informative.
I’m going through absolute hell my name is Mia. I had a sexual reassignment surgery when I was 18 and I was put on hormones at the age of 14 and bone blocker therapy once a month injection that lasted I think a year I’m now 32 and I noticed that last year I came loads of weight I am a petite person so I was around size UK8 and I went up to a size 16 to 18 my face look bloated I was sweating only on my face And then about 2 1/2 months ago I suddenly woke up with a itch. I couldn’t scratch that sent me to extreme anxiety and panic attack and the next seven days it escalated all nerves going up and down my arm in my armpit I actually climbed out my window to try and jump And then it stops and then I woke up to my eyes been in severe pain from behind and my left eye went blurry for about 20 seconds. I have been to the doctors of times even before any of the severe symptoms happened but I was literally going to the doctors a day with my mum crying they didn’t know what to do. They put me on some anti-inflammatory medication I had to go to and I had to go to emergency hospital, several times so my prolactin was very high and is probably gone up. I started to see tremors in my hands and my thumb would shake. I couldn’t control it and now I’ve noticed my jaw shakes. When they sent to the endocrinology, they sent the referral back saying I needed to be seen under a transgender specialist. I contacted the tower Stockport with an email to the head of enterology saying that I am very suicidal and the normal local endocrinology I’m not helping. I got a call within three days from a lovely woman at the Tavistock. It was about a three hour conversation and she read me the letter from the head Professor saying Mia is not in active transition Meaning I had my surgery and I am just seen as a woman on HRT and it is legal for theology to deny me. They proceeded to talk to me and see how severe my state was then the doctors my local GP called me being so kind and wanted to do so much for me it just made me laugh because they were not giving me any help until my angel guardians Called up and force them to as I have an endocrinology appointment next week also found on ultrasound had a parathyroid nodule which they think this present against the nerves and causing these situations that are happened to me that these problems I don’t know how to describe that I am going through so much my eyes are changing every day meaning the accuracy and sharpness. Sometimes I see double vision and then they go back to normal and then I have a pain itching sensation deep inside my ear. I have tried to combat all of this with working out walking taking my dogs out for hours, meeting with friends pushing myself to go out because I became agoraphobic and I didn’t leave the house for literally two months so my family and my amazing mum and sister Brother support me and made me go out with my mum and the dogs and I’ve lost 2 1/2 stone so that’s a plus I’m not eating any chocolatebut I’m scared and I don’t like having no control in my own body
Is a phosphorus deficiency a symptom of hyperparathyroidism? If so, can some people’s calcium show up normal in bloodwork some of the time with all the other signs and symptoms? I had an ER doctor think I had this already before.
I watched because doctor was handsome
Well there are worse excuses for that; question is... do you feel you learned anything?😮
Question. What does it mean if my blood test showed above normal for parathyroid intact but in normal range for calcium and yet I feel the symptoms of fatigue, muscle weakness, aches and pains in my bones?
Normocalcemic hyperparathyroidism or secondary hyperparathyroidism?
I had a CAC test which was 291. Is this from my dysfunctional parathyroid? Should I have it removed as I'm getting to a high risk for heart attack?
Do the other calcium controlling substances help or maybe be low in (calcitriol or calcitonin, think from thyroid and kidneys, are those tested ).