Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jan 22, 2022
I must say that I’m shocked! And sorry for such a disappointing visit.
There are other pituitary centers that are excellent. Is the Mayo appointment request pending?
When my daughter got the diagnosis from the first endocrinologist and only physician who realized something was actually wrong with her, we started looking into the best hospitals for her. She lived in Florida then. We ended up going to UVA in Charlottesville, VA. We also looked into NIH and Mayo.
It does not take years to diagnose Cushing’s- it may take repeat testing, but is expected. The MRI also has to be specific for detection- it will be repeated at the facility you chose.
Check back with Mayo- even if you have to see an internist first.
Can you let me know how your planning is going?
@astaingegerdm Hi! It’s been awhile and somehow I missed this one. Thanks so much for your response too. I had a repeat MRI at MD Anderson and they said it was clear. However, I have my first visit to Mayo next week. I have high serotonin, abnormal cortisol (fluctuations sometimes normal) and tested positive for IGF and getting some unusual hair growth now. So I’m so confused lol- pretty sure I have a tumor somewhere… I know for NET tumors the gold standard is the Gallium 68 or 64 but I wonder if anyone knows how they diagnose or find a etopic acromegaly? I was surprised that the endocrinologist I saw didn’t run a CBC count during my visit and said “that the Mayo Clinic IGF test isn’t reliable” and would retest me (in 8 weeks!.. that’s a long time with muscle wasting…) I find that hard to believe it’s a false positive and she so easily dismissed it. I doubt Mayo will do so….
Additionally it Looks like NET tumors responses to somastatian receptors during the PET but I also see literature thst somastaitan is used as a treatment for both? Does anyone know if a gallium find neuroendocrine and a possible rougue acromegaly? @colleenyoung
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 14, 2022
I sincerely hope you get a thorough work up at Mayo. It is very confusing I admit, but as you say - you have something. It’s not too late for you- I know you are very upset about symptoms such as muscle wasting. Once a treatment is found, you will restore lost muscle.
I was looking at articles to help outline the testing needed for diagnosis and treatment.
I found one- a long scholarly one by NIH -from 2015 that at the end gives you a good summary. Look at the end for Executive Summary. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4526141/pdf/nihms-692685.pdf
I sincerely hope you get a thorough work up at Mayo. It is very confusing I admit, but as you say - you have something. It’s not too late for you- I know you are very upset about symptoms such as muscle wasting. Once a treatment is found, you will restore lost muscle.
I was looking at articles to help outline the testing needed for diagnosis and treatment.
I found one- a long scholarly one by NIH -from 2015 that at the end gives you a good summary. Look at the end for Executive Summary. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4526141/pdf/nihms-692685.pdf
@astaingegerdm thank you. My CBC count is starting to show stress on my liver and pancreas (and low creatine kinease, lower lipase and elevated liver I went from normal 15 AST to 40 in less than two months) and experiencing a lot of nerve pain, right now I only have internal medicine and rheumatoid on the books although they are trying to move up endocrinology and I now have neurology in April. By chance I went to ER and have a small bowel thickening that needs to be examined and most GI in FL only do colonoscopies. I’m on a wait list for gastro but they said the list is really long. Time is important now. I don’t know how much internal medicine can order that isn’t department specific… I.e. growth hormone suppression test, or a gallium 64. I may have to fly to Texas (not MD Anderson) to get the gallium approved and then fly back to Mayo if they can’t do it until GI- but not being well and having a 6 year old at home thst needs me- it’s a lot. I hope I can get everything done at Mayo.
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 14, 2022
@phoebeghostwriter - I’m so sorry that I failed to understand the full scope of your symptoms!
Let’s hope Mayo doctors get together and get you the right testing!m now!
@phoebeghostwriter - I’m so sorry that I failed to understand the full scope of your symptoms!
Let’s hope Mayo doctors get together and get you the right testing!m now!
@astaingegerdm Amen! Lol I have a little boy to raise. 🙂 But yeah, I need Mayo’s help. I pray this comes together on this trip and God can fight this battle with me- and this is just for a diagnosis. Trying to stay strong for the long game.:)
It’s good news that you are going to a pituitary center next week!
There is also Mayo Clinic in Jacksonville, FL with excellent endocrinologists.
It seems that you are wasting time with your doctors now.
My daughter had pituitary surgery and has not had any recurrence.
Recovery was tough initially- she needed replacement hydrocortisone for a while while the body healed. She is doing very well now.
Could you please get back to us after your appointment next week?
@astaingegerdm Amen! Lol I have a little boy to raise. 🙂 But yeah, I need Mayo’s help. I pray this comes together on this trip and God can fight this battle with me- and this is just for a diagnosis. Trying to stay strong for the long game.:)
@astaingegerdm Amen! Lol I have a little boy to raise. 🙂 But yeah, I need Mayo’s help. I pray this comes together on this trip and God can fight this battle with me- and this is just for a diagnosis. Trying to stay strong for the long game.:)
@astaingegerdm Amen! Lol I have a little boy to raise. 🙂 But yeah, I need Mayo’s help. I pray this comes together on this trip and God can fight this battle with me- and this is just for a diagnosis. Trying to stay strong for the long game.:)
It has been a while since you last posted. I was thinking about you and wondering how you are doing. Did you get to Mayo for an appointment? I'd love to hear from you.
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I must say that I’m shocked! And sorry for such a disappointing visit.
There are other pituitary centers that are excellent. Is the Mayo appointment request pending?
When my daughter got the diagnosis from the first endocrinologist and only physician who realized something was actually wrong with her, we started looking into the best hospitals for her. She lived in Florida then. We ended up going to UVA in Charlottesville, VA. We also looked into NIH and Mayo.
It does not take years to diagnose Cushing’s- it may take repeat testing, but is expected. The MRI also has to be specific for detection- it will be repeated at the facility you chose.
Check back with Mayo- even if you have to see an internist first.
Can you let me know how your planning is going?
-
Like -
Helpful -
Hug
3 Reactions@astaingegerdm Hi! It’s been awhile and somehow I missed this one. Thanks so much for your response too. I had a repeat MRI at MD Anderson and they said it was clear. However, I have my first visit to Mayo next week. I have high serotonin, abnormal cortisol (fluctuations sometimes normal) and tested positive for IGF and getting some unusual hair growth now. So I’m so confused lol- pretty sure I have a tumor somewhere… I know for NET tumors the gold standard is the Gallium 68 or 64 but I wonder if anyone knows how they diagnose or find a etopic acromegaly? I was surprised that the endocrinologist I saw didn’t run a CBC count during my visit and said “that the Mayo Clinic IGF test isn’t reliable” and would retest me (in 8 weeks!.. that’s a long time with muscle wasting…) I find that hard to believe it’s a false positive and she so easily dismissed it. I doubt Mayo will do so….
Additionally it Looks like NET tumors responses to somastatian receptors during the PET but I also see literature thst somastaitan is used as a treatment for both? Does anyone know if a gallium find neuroendocrine and a possible rougue acromegaly? @colleenyoung
I sincerely hope you get a thorough work up at Mayo. It is very confusing I admit, but as you say - you have something. It’s not too late for you- I know you are very upset about symptoms such as muscle wasting. Once a treatment is found, you will restore lost muscle.
I was looking at articles to help outline the testing needed for diagnosis and treatment.
I found one- a long scholarly one by NIH -from 2015 that at the end gives you a good summary. Look at the end for Executive Summary.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4526141/pdf/nihms-692685.pdf
@astaingegerdm thank you. My CBC count is starting to show stress on my liver and pancreas (and low creatine kinease, lower lipase and elevated liver I went from normal 15 AST to 40 in less than two months) and experiencing a lot of nerve pain, right now I only have internal medicine and rheumatoid on the books although they are trying to move up endocrinology and I now have neurology in April. By chance I went to ER and have a small bowel thickening that needs to be examined and most GI in FL only do colonoscopies. I’m on a wait list for gastro but they said the list is really long. Time is important now. I don’t know how much internal medicine can order that isn’t department specific… I.e. growth hormone suppression test, or a gallium 64. I may have to fly to Texas (not MD Anderson) to get the gallium approved and then fly back to Mayo if they can’t do it until GI- but not being well and having a 6 year old at home thst needs me- it’s a lot. I hope I can get everything done at Mayo.
@phoebeghostwriter - I’m so sorry that I failed to understand the full scope of your symptoms!
Let’s hope Mayo doctors get together and get you the right testing!m now!
-
Like -
Helpful -
Hug
1 Reaction@astaingegerdm Amen! Lol I have a little boy to raise. 🙂 But yeah, I need Mayo’s help. I pray this comes together on this trip and God can fight this battle with me- and this is just for a diagnosis. Trying to stay strong for the long game.:)
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Like -
Helpful -
Hug
2 ReactionsMayo endocrine is amazing in Jacksonville. I highly recommend whoever is in need start the appt scheduling process. They are wonderful!
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3 ReactionsI hope things are going well, Phoebe.
Hello @phoebeghostwriter
It has been a while since you last posted. How are you feeling? Have you been seen at Mayo yet?
Hello @phoebeghostwriter
It has been a while since you last posted. I was thinking about you and wondering how you are doing. Did you get to Mayo for an appointment? I'd love to hear from you.
-
Like -
Helpful -
Hug
1 Reaction