My endocrinologist discovered my high calcium levels. I had horrible side affects. Extreme fatigue and general unwell feelings.I had surgery 2 months ago. They removed THREE parathyroid tumors. Crazy! My energy level improved dramatically. I have to now take calcium supplements. So grateful for great doctors. Salt Lake City, Utah
I just made appt to the norman parathyroid center in Tampa fl for surgery. There the best check them out. I'm out of state so you have to send them your records to evaluate and then they call you to discuss your diagnosis. I'm going for surgery in 3 weeks.
I was diagnosed in 2003 with hyperparathyroidism, my doctor did the wait and see approach my levels came back as normal so I was left, I never felt well eventually being diagnosed with ME/cfs/fibro.. In 2018 I was diagnosed with hyperthyroidism (graves) thyroid was removed due to it being toxic, I have been having blood work for the TSH, T3, T4 and they did a calcium it was raised, they then did pth that was high, the endo diagnosed hyperparathyroidism he put me on vitamin D as I had a deficiency, my PTH went back to normal, but my calcium is still 2.80..he again has said its hyperparathyroidism but is reluctant to treat me as my PTH has returned to normal, my new gp is trying to get me sorted, I have an appointment with the new endo but it's a phone appointment how will this consultant exam me as I have a slight swelling on the left hand side of my neck, I have all the symptoms of hyperparathyroidism 😭 have passed kidney stones, my scan showed ostiopeania and ostioporosis, I'm never off the toilet urinating I'm always thirsty, ect.. I'm loosing the will to live at the moment 😭😭😭😭
My dr (endocrinologist) did the wait and see approach. I started having suicidal thoughts and could not stop crying. I alienated my family with my confusing list of ongoing symptoms I am in hell. Just got ct results 2 adenomas one 6mm and one 7mm. I can't wait to see what's next. 4 years of crazy symptoms.
@@deborahcampbell2425 Deborah that's how I feel, some days I think is it worth going on.. I've read several papers on this subject and High Calcium can be sole destroying, as well as destroying your body. Calcium is very important for cognitively (brain) and other cells, its obvious that endos and doctors don't know much about hyperparathyroidism, but yet this specialist in this video seems to know a lot, its unforgiveable for a so called specialist to leave a person with hyperparathyroidism and not treat the condition, I asked my doctor "what do you want from me" do you want my calcium to go to 3.00 because that is hypercalcemia and COMA,, before you act, 🤷♀️.. I've been now left with ostiopeania of the spine, and ostioperosis of both knees and ankles, AND STILL MY ENDOCRINOLOGIST DRAGGED HIS HEELS!!!.. I have kicked him to the curbe now, just recived a letter today, I have a face to face appointment for the 2nd June 2021..🤦♀️ Just over 2 months to wait,, with these awfull symptoms 😠 do you have any palpitations or a fast heartbeat Deborah? Do you sweat more than normal? I get awful electric like shocks from my head to my feet, I've been told that's a indication of high calcium levels 🤷♀️ Hope you are doing OK and are coping with this, please feel free to ask me anything Karen💖💖
It is VERY important to know that PTH levels should be checked BEFORE the diagnosis of hyperparathyroidism can be made. It is a simple blood test that must be done if the calcium levels are found to be high.
Actually that's not true you can have a normal pth level with a high calcium level and it can still be hyperparathyroidism, also it can be the other way around a high pth level with a normal calcium level and still be hyperparathyroidism, there is a condition called normocalcemic.. Meaning patients calcium level is within the normal range but the parathyroid hormone is to high.. I myself had a diagnosis of hyperparathyroidism in 2003 after both calcium and pth levels were high, but unfortunately my specialist and doctor did the wait and see approach, after about 8/9 weeks they said my levels had returned to normal, I was left but still suffered some symptoms of hyperparathyroidism but was later diagnosed with ME/cfs fibro... In 2018 after several years of feeling unwell I was diagnosed with hyperthyroidism (graves) my thyroid had to be removed it was so toxic.. I went in to thyroid storm.. Last year because I have regular blood work for my TSH.. T3 T4.. They did my calcium it was slightly raised then they checked my PTH that was high. That was Aug last year, the new endo I was under checked my medical records he found several raised calcium levels going back to 2015..these were never acted upon by my doctor, the new endo recently arranged for me to have the DEXA scan which showed ostiopeania and ostioporosis, I've been in hospital passed kidney stones was in hospital with a kidney stone last year, now my calcium has gone to 2.80..but my PTH as come down because the endo put me on vitamin D, I had a deficiency, the endo has wrote to my surgery saying I have hyperparathyroidism but he will not treat me, 🤷♀️ I have all the symptoms my life is hell😭 my new doctor is now trying to get me another appointment with an endo just recived the appointment its for a phone consultation 🤷♀️ how on earth would that work, for a start I have a slight swelling on the left hand side of my neck.. I've read everything I can on this subject and in nearly all cases the only cure is removal of the offending gland or glands, hope you don't mind me putting this on you but I'm totally lost as to why I'm still not able to get treatment just thought I'd reach out to someone because I'm not really getting anywhere here in the UK.. 😭
@Tiger Bunny Yes you can have it both ways normal pth high calcium, normal calcium high PTH.. You can have primary hyperparathiyroidism, or secondary, as my endo has only put me on vitamin D, my level was 29..he thinks that will cure it.. My calcium is now 2.80, I have kicked him to the curb, waiting to see one in June, I have passed kidney stones, have gal stones, have ostioporosis of both knees and ankles and have ostiopein of my spine.. Still having awful symptoms of hyperparathiyroidism 😩
@Tiger Bunny Hi, I told my endo I should not be taking vitamin D with a high level of calcium and pth.. He dismissed what I said, yes my PTH has come down but vitamin D is 2.80..im no longer with that endo, but I can't see the other one until June 2nd 😠 I'm in the UK and covid is blamed for the waiting lists to see specialist 🤦♀️
@Tiger Bunny Hi... I have loaded my results into the pro calcium app and it says I definitely have hyperparathyroidism, but the endo already knows this he wrote to my gp to inform him but they did nothing until I saw a new gp at my surgery, he as got me the endo app, in June.. 👍
I been so scared to do surgery ..cancelled 4 times ..finally doing it March 3 2023..but the doctor is doing explore ..not the minimal invasive..so worried about my vocal cords ..
Have they come up with any new treatments for HypOparathriodism ?? Not a pleasant way to stay healthy. It feels like more of a guessing game than a treatment plan !! And anyone can tell you that has experienced it , Tetany is no easy problem to live with. Never know when it's going to happen or what can affect it till it happens. Any info would help us learn to cope with this problem.
I have just been diagnosed with primary parathyroid whats the difference.i also had a kidney stone removed 5 years ago and i wasn't told anything about it back then.i wasnt told until i had a blood a test done this year two months ago. and it showed high calcium then i got a test to check my parathyroid level. And i got diagnosed. I have primary parathyroid. I suffer from constant utis and im showing symptoms of having a stome .i have been waiting weeks to have a kidney scan.i have problems swallowing and i have a hoarse voice.i ache all the time in my bones does anyone know what is going on with me .should i be worried
I'm 80 yrs. old, have had high levels of calcium for 15 yrs., of annual blood work, (10.1-10.9), no kidney stones, and endocronologist diagnosed me thru PTH test as primary hyperparathroid disease...sent me to nephrologist, (as I was injured @ age 7, and have only 1 kidney...was sent for kidney ultrasound/doppler...stage 1 result, gfr = 90, 24 hr urine test done, ok..but did not check for calcium, bone density (2 tests done), result, bone density in good range. will see both nephrologist, and endochronoligist in spring of 2023...any thoughts or suggestions?
Hi I am 72years old, my vit d is 22 my calcium 10.5 and pth is 53 I have all the symptons and feel terrible ,my doctor said it's not hyperparathyroid, but I am sure it is ,don't know what to do.
I had 3 of the glands removed ten days ago, they left the 4th one because it wasn't as enlarged as the others. I just looked up my test results. The normal range for PTH is 23 - 97, so yours isn't elevated. Normal for calcium is 8.4 - 10.2, so yours is slightly elevated. My PTH last fall was 104 and my calcium was 10.5 like yours. I've had low vitamin D for years, it goes down every time I stop taking a supplement. They checked my PTH last fall because my bone density test showed a worsening of osteoporosis in my spine. They verified hyperparathyroid disease with a scan, so you might want to ask your doctor about that. I don't remember what kind of scan it was. Have you been having bone density tests? (I'm also 72.)
My labs looked exactly like yours. I had 3 parathyroid tumors removed last week. I disagree with the other person who commented on your lab work. Your PTH Iis abnormal, because is should be very low when blood calcium is elevated ( yours is, don’t believe that it is only slightly- adults over age 25, should NEVER have a calcium above 10mg/dl) . My dr didn’t think I had this either, I had to self refer to university of Wisconsin Madison. Now he is getting pictures of those tumors that he did not think I had
Thank you for your replies, I had a bone scan and I have osteopenia, also I have chronic gastritis, I don't drink and don't take nsaids, and have a very healthy diet,lots of palpitations and blood pressure keeps going up , can't sleep,and always feeling anxious,also losing weight x
@@serendipitymanifest8158 You are wrong about PTH levels. Hyperparathyroid is when the parathyroid glands create too much parathyroid hormone. Hence the word "hyper." When there is too much PTH in the body, it *causes* high calcium levels in the blood, not the other way around. I had my surgery at the UW Madison endocrine clinic. This was explained to me by my surgeon. Also, the lab they use considers calcium up to 10.2 mg/dl, not 10 mg/dl, to be normal for an adult.
@@serendipitymanifest8158 thankyo for your kind reply, I hope you are feeling better after your operation,and get your life back on track, I live in Spain, so I think I might travel back to the UK and go private,I wish you all the best x
So many symptoms, so many years. Hope I can find this surgeon if needed. My primary is doing further tests now for elevated calcium level.
My endocrinologist discovered my high calcium levels. I had horrible side affects. Extreme fatigue and general unwell feelings.I had surgery 2 months ago. They removed THREE parathyroid tumors. Crazy! My energy level improved dramatically. I have to now take calcium supplements. So grateful for great doctors. Salt Lake City, Utah
I just made appt to the norman parathyroid center in Tampa fl for surgery. There the best check them out. I'm out of state so you have to send them your records to evaluate and then they call you to discuss your diagnosis. I'm going for surgery in 3 weeks.
I was diagnosed in 2003 with hyperparathyroidism, my doctor did the wait and see approach my levels came back as normal so I was left, I never felt well eventually being diagnosed with ME/cfs/fibro.. In 2018 I was diagnosed with hyperthyroidism (graves) thyroid was removed due to it being toxic, I have been having blood work for the TSH, T3, T4 and they did a calcium it was raised, they then did pth that was high, the endo diagnosed hyperparathyroidism he put me on vitamin D as I had a deficiency, my PTH went back to normal, but my calcium is still 2.80..he again has said its hyperparathyroidism but is reluctant to treat me as my PTH has returned to normal, my new gp is trying to get me sorted, I have an appointment with the new endo but it's a phone appointment how will this consultant exam me as I have a slight swelling on the left hand side of my neck, I have all the symptoms of hyperparathyroidism 😭 have passed kidney stones, my scan showed ostiopeania and ostioporosis, I'm never off the toilet urinating I'm always thirsty, ect.. I'm loosing the will to live at the moment 😭😭😭😭
My dr (endocrinologist) did the wait and see approach. I started having suicidal thoughts and could not stop crying. I alienated my family with my confusing list of ongoing symptoms I am in hell. Just got ct results 2 adenomas one 6mm and one 7mm. I can't wait to see what's next. 4 years of crazy symptoms.
@@deborahcampbell2425
Deborah that's how I feel, some days I think is it worth going on.. I've read several papers on this subject and High Calcium can be sole destroying, as well as destroying your body. Calcium is very important for cognitively (brain) and other cells, its obvious that endos and doctors don't know much about hyperparathyroidism, but yet this specialist in this video seems to know a lot, its unforgiveable for a so called specialist to leave a person with hyperparathyroidism and not treat the condition, I asked my doctor "what do you want from me" do you want my calcium to go to 3.00 because that is hypercalcemia and COMA,, before you act, 🤷♀️.. I've been now left with ostiopeania of the spine, and ostioperosis of both knees and ankles, AND STILL MY ENDOCRINOLOGIST DRAGGED HIS HEELS!!!.. I have kicked him to the curbe now, just recived a letter today, I have a face to face appointment for the 2nd June 2021..🤦♀️ Just over 2 months to wait,, with these awfull symptoms 😠 do you have any palpitations or a fast heartbeat Deborah? Do you sweat more than normal? I get awful electric like shocks from my head to my feet, I've been told that's a indication of high calcium levels 🤷♀️
Hope you are doing OK and are coping with this, please feel free to ask me anything
Karen💖💖
I have this too, 39, it's hell on earth.
Please contact Dr Deva Boone at Southwest Parathyroid Center. One of the world’s best experts on this condition.
You sound exactly like me 😭
It is VERY important to know that PTH levels should be checked BEFORE the diagnosis of hyperparathyroidism can be made.
It is a simple blood test that must be done if the calcium levels are found to be high.
Actually that's not true you can have a normal pth level with a high calcium level and it can still be hyperparathyroidism, also it can be the other way around a high pth level with a normal calcium level and still be hyperparathyroidism, there is a condition called normocalcemic.. Meaning patients calcium level is within the normal range but the parathyroid hormone is to high.. I myself had a diagnosis of hyperparathyroidism in 2003 after both calcium and pth levels were high, but unfortunately my specialist and doctor did the wait and see approach, after about 8/9 weeks they said my levels had returned to normal, I was left but still suffered some symptoms of hyperparathyroidism but was later diagnosed with ME/cfs fibro... In 2018 after several years of feeling unwell I was diagnosed with hyperthyroidism (graves) my thyroid had to be removed it was so toxic.. I went in to thyroid storm.. Last year because I have regular blood work for my TSH.. T3 T4.. They did my calcium it was slightly raised then they checked my PTH that was high. That was Aug last year, the new endo I was under checked my medical records he found several raised calcium levels going back to 2015..these were never acted upon by my doctor, the new endo recently arranged for me to have the DEXA scan which showed ostiopeania and ostioporosis, I've been in hospital passed kidney stones was in hospital with a kidney stone last year, now my calcium has gone to 2.80..but my PTH as come down because the endo put me on vitamin D, I had a deficiency, the endo has wrote to my surgery saying I have hyperparathyroidism but he will not treat me, 🤷♀️ I have all the symptoms my life is hell😭 my new doctor is now trying to get me another appointment with an endo just recived the appointment its for a phone consultation 🤷♀️ how on earth would that work, for a start I have a slight swelling on the left hand side of my neck.. I've read everything I can on this subject and in nearly all cases the only cure is removal of the offending gland or glands, hope you don't mind me putting this on you but I'm totally lost as to why I'm still not able to get treatment just thought I'd reach out to someone because I'm not really getting anywhere here in the UK.. 😭
@Tiger Bunny
Yes you can have it both ways normal pth high calcium, normal calcium high PTH.. You can have primary hyperparathiyroidism, or secondary, as my endo has only put me on vitamin D, my level was 29..he thinks that will cure it.. My calcium is now 2.80, I have kicked him to the curb, waiting to see one in June, I have passed kidney stones, have gal stones, have ostioporosis of both knees and ankles and have ostiopein of my spine.. Still having awful symptoms of hyperparathiyroidism 😩
@Tiger Bunny
Hi, I told my endo I should not be taking vitamin D with a high level of calcium and pth.. He dismissed what I said, yes my PTH has come down but vitamin D is 2.80..im no longer with that endo, but I can't see the other one until June 2nd 😠 I'm in the UK and covid is blamed for the waiting lists to see specialist 🤦♀️
@Tiger Bunny
Hi... I have loaded my results into the pro calcium app and it says I definitely have hyperparathyroidism, but the endo already knows this he wrote to my gp to inform him but they did nothing until I saw a new gp at my surgery, he as got me the endo app, in June.. 👍
@Tiger Bunny
Sorry my calcium is 2.80...not vitamin D... My vitamin D Is 52..👍
Does it have to be general anesthesia with this surgery?
I been so scared to do surgery ..cancelled 4 times ..finally doing it March 3 2023..but the doctor is doing explore ..not the minimal invasive..so worried about my vocal cords ..
Please contact Dr Deva Boone at Southwest Parathyroid Center. One of the world’s best experts on this condition.
Very good explanation Doctor and so right 🎉
Norman Parathyroid in Tampa Florida is the best.
I live near Buffalo, NY and my insurance will not cover it.
Have they come up with any new treatments for
HypOparathriodism ??
Not a pleasant way to stay healthy.
It feels like more of a guessing game than a treatment plan !! And anyone can tell you that has experienced it , Tetany is no easy problem to live with. Never know when it's going to happen or what can affect it till it happens. Any info would help us learn to cope with this problem.
Thank you for this video. I have an appointment with an Endocrinologist in 2 weeks.
I have just been diagnosed with primary parathyroid whats the difference.i also had a kidney stone removed 5 years ago and i wasn't told anything about it back then.i wasnt told until i had a blood a test done this year two months ago. and it showed high calcium then i got a test to check my parathyroid level. And i got diagnosed. I have primary parathyroid. I suffer from constant utis and im showing symptoms of having a stome .i have been waiting weeks to have a kidney scan.i have problems swallowing and i have a hoarse voice.i ache all the time in my bones does anyone know what is going on with me .should i be worried
I'm 80 yrs. old, have had high levels of calcium for 15 yrs., of annual blood work, (10.1-10.9), no kidney stones, and endocronologist diagnosed me thru PTH test as primary hyperparathroid disease...sent me to nephrologist, (as I was injured @ age 7, and have only 1 kidney...was sent for kidney ultrasound/doppler...stage 1 result, gfr = 90, 24 hr urine test done, ok..but did not check for calcium, bone density (2 tests done), result, bone density in good range. will see both nephrologist, and endochronoligist in spring of 2023...any thoughts or suggestions?
Please contact Dr Deva Boone at Southwest Parathyroid Center. One of the world’s best experts on this condition.
Hi I am 72years old, my vit d is 22 my calcium 10.5 and pth is 53 I have all the symptons and feel terrible ,my doctor said it's not hyperparathyroid, but I am sure it is ,don't know what to do.
I had 3 of the glands removed ten days ago, they left the 4th one because it wasn't as enlarged as the others. I just looked up my test results. The normal range for PTH is 23 - 97, so yours isn't elevated. Normal for calcium is 8.4 - 10.2, so yours is slightly elevated. My PTH last fall was 104 and my calcium was 10.5 like yours. I've had low vitamin D for years, it goes down every time I stop taking a supplement. They checked my PTH last fall because my bone density test showed a worsening of osteoporosis in my spine. They verified hyperparathyroid disease with a scan, so you might want to ask your doctor about that. I don't remember what kind of scan it was. Have you been having bone density tests? (I'm also 72.)
My labs looked exactly like yours. I had 3 parathyroid tumors removed last week. I disagree with the other person who commented on your lab work. Your PTH Iis abnormal, because is should be very low when blood calcium is elevated ( yours is, don’t believe that it is only slightly- adults over age 25, should NEVER have a calcium above 10mg/dl) .
My dr didn’t think I had this either, I had to self refer to university of Wisconsin Madison. Now he is getting pictures of those tumors that he did not think I had
Thank you for your replies, I had a bone scan and I have osteopenia, also I have chronic gastritis, I don't drink and don't take nsaids, and have a very healthy diet,lots of palpitations and blood pressure keeps going up , can't sleep,and always feeling anxious,also losing weight x
@@serendipitymanifest8158 You are wrong about PTH levels. Hyperparathyroid is when the parathyroid glands create too much parathyroid hormone. Hence the word "hyper." When there is too much PTH in the body, it *causes* high calcium levels in the blood, not the other way around. I had my surgery at the UW Madison endocrine clinic. This was explained to me by my surgeon. Also, the lab they use considers calcium up to 10.2 mg/dl, not 10 mg/dl, to be normal for an adult.
@@serendipitymanifest8158 thankyo for your kind reply, I hope you are feeling better after your operation,and get your life back on track, I live in Spain, so I think I might travel back to the UK and go private,I wish you all the best x
Thank you, Doc!!
Ive heard that some people have their parathyroid surgery with the surgeon going through the patient's armpit/chest wall.
No mention of Lithium which is what caused mine .
Well my doctor didnt check after many boughts of kidney stoned cracked my spine negligence a radiologist insisted further investigation 10 years later
Th I s stinks. I feel terrible!!