After I released the video, a viewer reached out and shared a great resource with me! Check out American Multiple Endocrine Neoplasia Support at www.AMENSupport.org
Thank you for posting this, I have high calcium, low vit D, low phosphorus, high prolactin, inappropriately low parathyroid… This might be what I have.. my endocrinologist has been amazing so far, and I just wasn’t expecting this. I’m 34 years old.
I’m 38. Was diagnosed with MEN at age 16. Im sure I suffered from it way before then but misdiagnosed because it’s so rare. My family was genetic tested and I was the only one with it. Pretty much everything that goes along with this disease I have or have had.
What symptoms? I have MEN I as well, I had high calcium for many years, and a Pituitary tumor (disappeared). Now I have a big tumor in my pancreas. I am 44.
I won this lottery. Bingo I have it, my brother had it, he passed at 50, my dad had it, and two sisters have it. Quite a few in the expanded family do. My issue is I do not medicate for it regularly. I was borderline acromegaly, Cushing disease, Zollinger-Ellison syndrome and I had tumors on my pancreas. I also have tumors on my lymph nodes and had some removed from my duodenum. This genetic defect is no joke.
I have MEN I, my mom has it, and my brother had it. I have had the parathyroid surgery in 2004 and have had to take calcium ever since, but it all depends on how well the parathyroid transplants take.
You made another video! Yay! And congrats on your pregnancy. Pregnancy can be tough so I understand why making a video can be difficult. Add kids to that, and it's even more difficult.
I had parathyroid surgery in 2004 (been on daily calcium ever since). My brother died of a mutation of MEN I tumors in lungs, he was a smoker. My mom has had all three classic symptoms of MEN 1since late 70s or early 80s,10 major surgeries, 75% of pancreas removed, stomach, parathyroid surgeries, pituitary surgery. I now have a 2”x1-1/2” non functioning tumor in tail of the pancreas that I am facing surgery to remove. I had a pituitary tumor but it disappeared back in 2011-12.
What's really sad is that I read more about clusters of families with a history of lung neuroendocrine tumors in families. I saw a geneticist and she said I don't qualify unless I have 2 of the 3p's to qualify. That is the saddest thing I have ever heard in my life. I'm suffering today because I don't qualify. I LIVE WITH THE DAMN SYMPTOMS.......how are we ever going to get ahead to find a cure for this already rare disease. Pretty sad money comes first before the patients needs.
This means so much for me. I'm getting ready for the surgery to remove my parathyroid glands. My father has this disease, I do. My grandma died from complications due to this disease... Unfortunately... I can't find a geneticist in my area. ZES was what I was diagnosed with at first.
Thank you for watching. I"m so glad that this video is reaching people who find it valuable! Maybe check out: www.findageneticcounselor.com/. You can find a genetic counselor based on your zip code or even someone that you can see remotely through phone or video consult.
I have men1 and I like to call myself a teenage mutant ninja turtle idk it makes me feel slightly better about being a mutant I also call myself a reverse shark because sharks don’t produce any calcium lol 😂
Have had abdominal pain in July 2020 and was incidentally diagnosed with a pancreatic NET, and because of years with muscle pain and weakness, I was going through muscle diagnostics, where Hyperparathyreoidism was diagnosed in 2019. Calcium was high in the 1990 ies already, but my GPback then told me I should be glad, I would not get osteoporosis. So it was not followed up. Genetic testing did not show MEN 1, MEN 4. I wonder, if there are rare mutations, that are still not tested.
Video is very informational. The challenge I am facing is that endocrinologists won’t listen to the doctors who have run all the testing over the past 5 years of nightmares I have faced. Low vitamin D High Calcium Inappropriate PTH Extreme hypercalciuria Massive kidney stones Thyroid tumors Parathyroid tumors Pituitary tumor High cortisol even after a dex suppression Striae Purpura What is worse is that my sister who is 3 years older than me went through the same things and was ignored until tumors ruptured along with developing conns.. Any suggestions on how to get endocrinologists to actually listen to facts that a nephrologist is trying to present over and over?
Hey Jusin, I’m so sorry you’re dealing with this challenge. This must be so frustrating! If you have a large academic hospital near you I would search their website and take a look at the endocrinology department and see if anyone on the team specializes in MEN1. Or you can see a genetic counselor to discuss genetic testing. Identifying an MEN1 mutation should help you get the care you need. Feel free to message me on Instagram and maybe I can help find an MEN1 expert near you.
Thank you so much for this info. I see my primary on Wednesday as he is just as frustrated. Hoping they can get me into cleveland Clinic as it is getting bad very quickly.
I had parathyroid surgery a year ago..but all in my family are normal...my doctor said that i hav microcalcification im thyroid...doc put me on a follow up...
I just got diagnosed with MEN1, got diagnosed with pituitary tumors in 2020, hyperparathyroidism in 2021 and insulinoma from pancreatic tumors recently.. I’m absolutely terrified, scared and feeling hopeless, just had a baby in September and I’m now worried about his health as well because I’ve learned this is genetic. Is there any hope for me? And is this cancerous?
Genetic testing is often covered by insurance based on personal and family history. If it’s not covered, most labs offer out-of-pocket testing for $250.
Hello I am yash age 22 years I was diagonised with disease of MEN 1 syndrome on 31 may 2023 and DDX41 mutuation variant on 31 may 2023 so mam mene Surgery of parathyriod done 28 july 2023 and whipple procedure done on 6 september sucessfully & Pituatary arachnoid cyst have on follow up . So i ask that mam this problem need regular investigation every 6 months . In case of men 1 tumor can be reoccur mostly or rarely ? And DDX41 have no clinic find in body check up & scan . I am feeling very bad for my future . I also say that my father was died with disease renal cancer stage 4 it is related to men 1 problem ? I request pls reply me .
I know this is really late. But is it normal for say..no one heard of MEN whatever to get kidney stones…and a dr to take an X-ray or hands …then decide to do surgery to remove parathyroid glands (idk how many) and replace (at least one idk) in the patients arm?
If you’re having your parathyroid glands removed, some of the removed parathyroid tissue might be placed in your arm to try to maintain a normal calcium level. It can also be more easily accessed from your arm in the future if need be. This is a good question for your surgeon who can discuss the specifics of your situation.
I have MEN 1, I had all 4 parathyroid glands removed when I was 26, I have 2 insulinoma’s one in the head and one in the tail of my pancreas and a pituitary tumour, I am nearly 65 years old now, my bone scans are ‘brilliant’ my doc says and apart from taking One Alpha Calcidol every other day I rarely get sick!
After I released the video, a viewer reached out and shared a great resource with me! Check out American Multiple Endocrine Neoplasia Support at www.AMENSupport.org
Thank you for posting this, I have high calcium, low vit D, low phosphorus, high prolactin, inappropriately low parathyroid… This might be what I have.. my endocrinologist has been amazing so far, and I just wasn’t expecting this. I’m 34 years old.
I’m 38. Was diagnosed with MEN at age 16. Im sure I suffered from it way before then but misdiagnosed because it’s so rare. My family was genetic tested and I was the only one with it. Pretty much everything that goes along with this disease I have or have had.
Thank you for sharing ❤️ It’s terrible how often this condition is misdiagnosed.
What symptoms? I have MEN I as well, I had high calcium for many years, and a Pituitary tumor (disappeared). Now I have a big tumor in my pancreas. I am 44.
I won this lottery. Bingo I have it, my brother had it, he passed at 50, my dad had it, and two sisters have it. Quite a few in the expanded family do. My issue is I do not medicate for it regularly. I was borderline acromegaly, Cushing disease, Zollinger-Ellison syndrome and I had tumors on my pancreas. I also have tumors on my lymph nodes and had some removed from my duodenum. This genetic defect is no joke.
Thank you for this information, my husband passed from men1 and both sons have it also
Great information! My endocrinologist just told me that I have this condition but didn’t give me a lot of info. Thank you for this video
I’m so glad you found the video helpful!
I have MEN I, my mom has it, and my brother had it. I have had the parathyroid surgery in 2004 and have had to take calcium ever since, but it all depends on how well the parathyroid transplants take.
Thank you for this info. Now I know lots of questions to ask.
THANKS sooo much
My pleasure! I hope your friends and family will understand your syndrome a little better with this video.
@@CancerGC there is a men1 Facebook support group i shared the video there as well ! Thanks for making us rare folks feel seen 💕💕💕
You made another video! Yay! And congrats on your pregnancy. Pregnancy can be tough so I understand why making a video can be difficult. Add kids to that, and it's even more difficult.
Thanks! ❤️ It’s so motivating to see people enjoying my videos - I have a few interesting topics coming up!
I had parathyroid surgery in 2004 (been on daily calcium ever since). My brother died of a mutation of MEN I tumors in lungs, he was a smoker. My mom has had all three classic symptoms of MEN 1since late 70s or early 80s,10 major surgeries, 75% of pancreas removed, stomach, parathyroid surgeries, pituitary surgery.
I now have a 2”x1-1/2” non functioning tumor in tail of the pancreas that I am facing surgery to remove. I had a pituitary tumor but it disappeared back in 2011-12.
What's really sad is that I read more about clusters of families with a history of lung neuroendocrine tumors in families. I saw a geneticist and she said I don't qualify unless I have 2 of the 3p's to qualify. That is the saddest thing I have ever heard in my life. I'm suffering today because I don't qualify. I LIVE WITH THE DAMN SYMPTOMS.......how are we ever going to get ahead to find a cure for this already rare disease. Pretty sad money comes first before the patients needs.
I have the same and cancer stage four in pancreas tumors in adrenal pituitary pancreas lungs now possibly liver and thyroid
This means so much for me. I'm getting ready for the surgery to remove my parathyroid glands. My father has this disease, I do. My grandma died from complications due to this disease... Unfortunately... I can't find a geneticist in my area. ZES was what I was diagnosed with at first.
Thank you for watching. I"m so glad that this video is reaching people who find it valuable! Maybe check out: www.findageneticcounselor.com/. You can find a genetic counselor based on your zip code or even someone that you can see remotely through phone or video consult.
I have men1 and I like to call myself a teenage mutant ninja turtle idk it makes me feel slightly better about being a mutant I also call myself a reverse shark because sharks don’t produce any calcium lol 😂
Have had abdominal pain in July 2020 and was incidentally diagnosed with a pancreatic NET, and because of years with muscle pain and weakness, I was going through muscle diagnostics, where Hyperparathyreoidism was diagnosed in 2019. Calcium was high in the 1990 ies already, but my GPback then told me I should be glad, I would not get osteoporosis. So it was not followed up. Genetic testing did not show MEN 1, MEN 4. I wonder, if there are rare mutations, that are still not tested.
Thank you so much!
Thank you for watching ❤️
THANK YOU
Video is very informational.
The challenge I am facing is that endocrinologists won’t listen to the doctors who have run all the testing over the past 5 years of nightmares I have faced.
Low vitamin D
High Calcium
Inappropriate PTH
Extreme hypercalciuria
Massive kidney stones
Thyroid tumors
Parathyroid tumors
Pituitary tumor
High cortisol even after a dex suppression
Striae
Purpura
What is worse is that my sister who is 3 years older than me went through the same things and was ignored until tumors ruptured along with developing conns..
Any suggestions on how to get endocrinologists to actually listen to facts that a nephrologist is trying to present over and over?
Hey Jusin, I’m so sorry you’re dealing with this challenge. This must be so frustrating! If you have a large academic hospital near you I would search their website and take a look at the endocrinology department and see if anyone on the team specializes in MEN1. Or you can see a genetic counselor to discuss genetic testing. Identifying an MEN1 mutation should help you get the care you need. Feel free to message me on Instagram and maybe I can help find an MEN1 expert near you.
Thank you so much for this info. I see my primary on Wednesday as he is just as frustrated. Hoping they can get me into cleveland Clinic as it is getting bad very quickly.
Try going to an ENT
I had parathyroid surgery a year ago..but all in my family are normal...my doctor said that i hav microcalcification im thyroid...doc put me on a follow up...
I just got diagnosed with MEN1, got diagnosed with pituitary tumors in 2020, hyperparathyroidism in 2021 and insulinoma from pancreatic tumors recently.. I’m absolutely terrified, scared and feeling hopeless, just had a baby in September and I’m now worried about his health as well because I’ve learned this is genetic. Is there any hope for me? And is this cancerous?
How much does it cost to get tested?
Genetic testing is often covered by insurance based on personal and family history. If it’s not covered, most labs offer out-of-pocket testing for $250.
Hello I am yash age 22 years I was diagonised with disease of MEN 1 syndrome on 31 may 2023 and DDX41 mutuation variant on 31 may 2023 so mam mene Surgery of parathyriod done 28 july 2023 and whipple procedure done on 6 september sucessfully & Pituatary arachnoid cyst have on follow up .
So i ask that mam this problem need regular investigation every 6 months . In case of men 1 tumor can be reoccur mostly or rarely ? And DDX41 have no clinic find in body check up & scan . I am feeling very bad for my future .
I also say that my father was died with disease renal cancer stage 4 it is related to men 1 problem ?
I request pls reply me .
Once all the organs are removed then it’s cured but you will need to take hormone replacements for the rest of your life
@@scarba mam but merko non functioning the tumor
I know this is really late. But is it normal for say..no one heard of MEN whatever to get kidney stones…and a dr to take an X-ray or hands …then decide to do surgery to remove parathyroid glands (idk how many) and replace (at least one idk) in the patients arm?
If you’re having your parathyroid glands removed, some of the removed parathyroid tissue might be placed in your arm to try to maintain a normal calcium level. It can also be more easily accessed from your arm in the future if need be. This is a good question for your surgeon who can discuss the specifics of your situation.
I have MEN 1, I had all 4 parathyroid glands removed when I was 26, I have 2 insulinoma’s one in the head and one in the tail of my pancreas and a pituitary tumour, I am nearly 65 years old now, my bone scans are ‘brilliant’ my doc says and apart from taking One Alpha Calcidol every other day I rarely get sick!
Thank you so much !