@janfam , Yes. My hormones all normal. But my ct scan and mri show a very lipid poor mass- they can’t determine if it’s just lipid poor adenoma or a “silent” pheochromocytoma based on the scan- we have been watching and scanning every 6 months for a while… size is stable so I am not sure yet what I will do. Best wishes for an uneventful surgery and speedy recovery! Lots of positive wishes coming your way! Keep us updated on how it goes!
If you don't mind sharing, how did you get your doctors to look for the mass in the first place? I have had 2 parathyroid adenomas removed (March 2021) and my PTH and Calcium are creeping up, again. I have had one increased and one normal lab for both 5-HIAA and metanephrines. Those were checked due to PACs/PVCs and intermittent HBP (160/110 at the highest). I have normal-ish BP now (130/90). I have had one elevated (3X upper limit of normal), and one not, gastrin. (Only on H2 blockers 20 mg at time of each test.) I have had 3 elevated chromogranin A labs. I have high titer (1:1280) speckled ANA that doesn't seem to be rheumatological. I quite obviously have had neuroendocrine tumors already. And I cannot get an endocrinologist in either Maine or Massachusetts who will even check for a multiple endocrine neoplasia.
The hyperparathyroidism is recurring and I cannot get anyone to look for an answer to stopping it.
Hi @parve. Can you share which surgery you had? How are you feeling? I am four weeks post operative from a mini back scope right adrenalectomy. I had what they thought was one tumor which they monitored for the past seven years. At the time of surgery it was 2cm x 2cm x 2.5cm. my adrenal gland was twice the size it should have been. When they did the biopsy they discovered my adrenal gland was full of many small nodules that were to small to show up on CT scan. My surgery took 25min and I was home discharged the next morning. However this procedure is not readily available or practiced at most hospitals or by many surgeons.
Thanks
Dawn
If you don't mind sharing, how did you get your doctors to look for the mass in the first place? I have had 2 parathyroid adenomas removed (March 2021) and my PTH and Calcium are creeping up, again. I have had one increased and one normal lab for both 5-HIAA and metanephrines. Those were checked due to PACs/PVCs and intermittent HBP (160/110 at the highest). I have normal-ish BP now (130/90). I have had one elevated (3X upper limit of normal), and one not, gastrin. (Only on H2 blockers 20 mg at time of each test.) I have had 3 elevated chromogranin A labs. I have high titer (1:1280) speckled ANA that doesn't seem to be rheumatological. I quite obviously have had neuroendocrine tumors already. And I cannot get an endocrinologist in either Maine or Massachusetts who will even check for a multiple endocrine neoplasia.
The hyperparathyroidism is recurring and I cannot get anyone to look for an answer to stopping it.
Hello @larak and welcome to Mayo Connect. It sounds as if you have a number of problems and do not feel that you are getting answers. Is that correct?
You posted that, "I quite obviously have had neuroendocrine tumors already." Have you had surgery for the neuroendocrine tumors? We have a NETs Support Group, that you might find helpful for members with NETs. Here is the link to that group, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
If you feel that are not getting answers, I encourage you to get a second opinion. Perhaps a consultation from a major medical center in your area or you might consider a consultation with Mayo Clinic. Here is a link that will direct you to a Mayo appointment, http://mayocl.in/1mtmR63.
@larak, What are your most difficult symptoms currently?
Hi @parve. Can you share which surgery you had? How are you feeling? I am four weeks post operative from a mini back scope right adrenalectomy. I had what they thought was one tumor which they monitored for the past seven years. At the time of surgery it was 2cm x 2cm x 2.5cm. my adrenal gland was twice the size it should have been. When they did the biopsy they discovered my adrenal gland was full of many small nodules that were to small to show up on CT scan. My surgery took 25min and I was home discharged the next morning. However this procedure is not readily available or practiced at most hospitals or by many surgeons.
Thanks
Dawn
My tumor was found in the left adrenal gland after I did a CT Scan for pain in my right side (kidney). So it was an incidental finding as I had no symptoms related to Pheochromocytoma. I was treated for the kidney infection and followed up with surgeons about the Pheochromocytoma. I am today a week old after surgery and still feel a bit weak..I get exhausted quickly. They did a laparoscopic surgery so I have four puncture points on my side. I just saw the surgeon today and he says I’m okay. Really want to be back to my active self
If you don't mind sharing, how did you get your doctors to look for the mass in the first place? I have had 2 parathyroid adenomas removed (March 2021) and my PTH and Calcium are creeping up, again. I have had one increased and one normal lab for both 5-HIAA and metanephrines. Those were checked due to PACs/PVCs and intermittent HBP (160/110 at the highest). I have normal-ish BP now (130/90). I have had one elevated (3X upper limit of normal), and one not, gastrin. (Only on H2 blockers 20 mg at time of each test.) I have had 3 elevated chromogranin A labs. I have high titer (1:1280) speckled ANA that doesn't seem to be rheumatological. I quite obviously have had neuroendocrine tumors already. And I cannot get an endocrinologist in either Maine or Massachusetts who will even check for a multiple endocrine neoplasia.
The hyperparathyroidism is recurring and I cannot get anyone to look for an answer to stopping it.
This is very good, helpful information.
Im in Oklahoma, and have found that doctors are very uneasy about this condition. Im muttling through by taking a cortisol replacement which is bovine dried adrenal cortex. Waiting to see a Liver guy.
Hello @larak and welcome to Mayo Connect. It sounds as if you have a number of problems and do not feel that you are getting answers. Is that correct?
You posted that, "I quite obviously have had neuroendocrine tumors already." Have you had surgery for the neuroendocrine tumors? We have a NETs Support Group, that you might find helpful for members with NETs. Here is the link to that group, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
If you feel that are not getting answers, I encourage you to get a second opinion. Perhaps a consultation from a major medical center in your area or you might consider a consultation with Mayo Clinic. Here is a link that will direct you to a Mayo appointment, http://mayocl.in/1mtmR63.
@larak, What are your most difficult symptoms currently?
I did have surgery on 3/24/21. 2 parathyroid adenomas were removed. Numbers were good for a bit. However, now PTH & Ca are creeping up, again.
No one looked for an overall reason for the adenomas. I had those other weird labs I mentioned. And it really seems like that mountain of labs, having had tumors already, and having osteopenia isn't enough for scans. I don't get it.
I am in the greater Boston area and have gone round and round with Mass General Brigham. Everyone looks at their one area and says there's not enough there: genetics, pituitary, adrenal. No one is looking at the whole picture.
I am currently being treated for pheochromocytoma symptoms such as high blood pressure and high ocular pressure which lead to glaucoma. HPB meds and Glaucoma meds so far. I have Adrenal tumors on both kidneys and the are slowly growing.
Hi @parve. Can you share which surgery you had? How are you feeling? I am four weeks post operative from a mini back scope right adrenalectomy. I had what they thought was one tumor which they monitored for the past seven years. At the time of surgery it was 2cm x 2cm x 2.5cm. my adrenal gland was twice the size it should have been. When they did the biopsy they discovered my adrenal gland was full of many small nodules that were to small to show up on CT scan. My surgery took 25min and I was home discharged the next morning. However this procedure is not readily available or practiced at most hospitals or by many surgeons.
Thanks
Dawn
I was going to have a 4cm mass removed in Miami. He said he may have to open me up through abdomen due to previous scar tissue. I am now going next week to the Carling Endocrine Hospital in Tampa for a mini back scope procedure. I’m told people fly there from all over the country. I will keep everyone posted.
I am currently being treated for pheochromocytoma symptoms such as high blood pressure and high ocular pressure which lead to glaucoma. HPB meds and Glaucoma meds so far. I have Adrenal tumors on both kidneys and the are slowly growing.
I was going to have a 4cm mass removed in Miami. He said he may have to open me up through abdomen due to previous scar tissue. I am now going next week to the Carling Endocrine Hospital in Tampa for a mini back scope procedure. I’m told people fly there from all over the country. I will keep everyone posted.
Connect
Connect
Like
Helpful
Hug
If you don't mind sharing, how did you get your doctors to look for the mass in the first place? I have had 2 parathyroid adenomas removed (March 2021) and my PTH and Calcium are creeping up, again. I have had one increased and one normal lab for both 5-HIAA and metanephrines. Those were checked due to PACs/PVCs and intermittent HBP (160/110 at the highest). I have normal-ish BP now (130/90). I have had one elevated (3X upper limit of normal), and one not, gastrin. (Only on H2 blockers 20 mg at time of each test.) I have had 3 elevated chromogranin A labs. I have high titer (1:1280) speckled ANA that doesn't seem to be rheumatological. I quite obviously have had neuroendocrine tumors already. And I cannot get an endocrinologist in either Maine or Massachusetts who will even check for a multiple endocrine neoplasia.
The hyperparathyroidism is recurring and I cannot get anyone to look for an answer to stopping it.
-
Like -
Helpful -
Hug
3 ReactionsHi @parve. Can you share which surgery you had? How are you feeling? I am four weeks post operative from a mini back scope right adrenalectomy. I had what they thought was one tumor which they monitored for the past seven years. At the time of surgery it was 2cm x 2cm x 2.5cm. my adrenal gland was twice the size it should have been. When they did the biopsy they discovered my adrenal gland was full of many small nodules that were to small to show up on CT scan. My surgery took 25min and I was home discharged the next morning. However this procedure is not readily available or practiced at most hospitals or by many surgeons.
Thanks
Dawn
-
Like -
Helpful -
Hug
4 ReactionsHello @larak and welcome to Mayo Connect. It sounds as if you have a number of problems and do not feel that you are getting answers. Is that correct?
You posted that, "I quite obviously have had neuroendocrine tumors already." Have you had surgery for the neuroendocrine tumors? We have a NETs Support Group, that you might find helpful for members with NETs. Here is the link to that group,
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
If you feel that are not getting answers, I encourage you to get a second opinion. Perhaps a consultation from a major medical center in your area or you might consider a consultation with Mayo Clinic. Here is a link that will direct you to a Mayo appointment, http://mayocl.in/1mtmR63.
@larak, What are your most difficult symptoms currently?
My tumor was found in the left adrenal gland after I did a CT Scan for pain in my right side (kidney). So it was an incidental finding as I had no symptoms related to Pheochromocytoma. I was treated for the kidney infection and followed up with surgeons about the Pheochromocytoma. I am today a week old after surgery and still feel a bit weak..I get exhausted quickly. They did a laparoscopic surgery so I have four puncture points on my side. I just saw the surgeon today and he says I’m okay. Really want to be back to my active self
-
Like -
Helpful -
Hug
5 ReactionsThank you for sharing.
This is very good, helpful information.
Im in Oklahoma, and have found that doctors are very uneasy about this condition. Im muttling through by taking a cortisol replacement which is bovine dried adrenal cortex. Waiting to see a Liver guy.
-
Like -
Helpful -
Hug
3 ReactionsI did have surgery on 3/24/21. 2 parathyroid adenomas were removed. Numbers were good for a bit. However, now PTH & Ca are creeping up, again.
No one looked for an overall reason for the adenomas. I had those other weird labs I mentioned. And it really seems like that mountain of labs, having had tumors already, and having osteopenia isn't enough for scans. I don't get it.
I am in the greater Boston area and have gone round and round with Mass General Brigham. Everyone looks at their one area and says there's not enough there: genetics, pituitary, adrenal. No one is looking at the whole picture.
-
Like -
Helpful -
Hug
2 ReactionsI am currently being treated for pheochromocytoma symptoms such as high blood pressure and high ocular pressure which lead to glaucoma. HPB meds and Glaucoma meds so far. I have Adrenal tumors on both kidneys and the are slowly growing.
-
Like -
Helpful -
Hug
3 ReactionsI was going to have a 4cm mass removed in Miami. He said he may have to open me up through abdomen due to previous scar tissue. I am now going next week to the Carling Endocrine Hospital in Tampa for a mini back scope procedure. I’m told people fly there from all over the country. I will keep everyone posted.
-
Like -
Helpful -
Hug
2 ReactionsHello @packard68 and welcome to Mayo Connect
From your post, I see that you are being treated for adrenal tumors on both kidneys.
Were you having symptoms that led to this diagnosis? How are you feeling currently?
-
Like -
Helpful -
Hug
1 Reaction@janfam Dr Carling IS AMAZING! I am forever grateful to him and his team!
You are in good hands!!
Dawn
-
Like -
Helpful -
Hug
3 Reactions