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Feeling discouraged and too many specialists
I’m feeling so defeated tonight. While waiting for my Mayo Clinic appointment, I have continued to lose muscle mass in my arms and legs. I’m bruising easily and the night sweats are unbearable. I have a pain in stomach waking me at night and my oxygen level is dipping. My potassium level dropped and I was given potassium pills at the ER. My blood work came back with low lymphs and high hepcritin. I went to a neuroendocrinologist at Mass General today in hopes that he could at lease get the ball rolling as one of my first symptoms was high cortisol on a previous 24 urine. However I also had elevated 5HIAA back in December but my local Dr thought it wasn’t too out of range then. So I expected more from Harvard. More digging. More expertise. More action. He was only interested in my pituitary. When mentioned my other NET related symptoms he wanted to refer me to a GI doctor. I made a huge mistake. I thought even if we are not sure if it was a suspicious mircoandenoma with MRI he would at least. Run other tests. He said he is only pituitary and did nothing other than give my another urine and more of the same labs not a single NET blood test. He said Cushing takes months to diagnose. He ignored and didn’t even refer me to a NET specialist.No help. No scans. No Care. I don’t know what to do.
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Hello @phoebeghostwriter
I am sorry to hear that you are still searching for answers. If you need to find a NET specialist, here is a link from the Carcinoid Cancer Foundation that lists NET specialists all over the U.S, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. You might see if you can find one that is near to you and then ask for a referral from your PCP if a referral is necessary for your insurance coverage. A GI doctor might also be able to help you at this point.
You said you were waiting for an appointment at Mayo. Has one been scheduled yet?
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1 ReactionAwe, thanks for the follow up. 🙂 I have a serotonin and chromein G test in progress to see if I’m led in that direction or if it’s Cushing. Once the results come in this weekend I’ll have maybe better direction. With my symptoms all over the place, no one knows what to do with me- high cortisol, low cortisol, RA, weak thin legs, etc. Mayo isn’t scheduled until March.
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2 ReactionsMt. Sinai team in NYC with Dr Willin does telehealth after sending all records and cd to them they respond quickly. I have watched their education sessions and complex cases. this is the NET team in Mount Sinai NYC just athought good luck
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3 ReactionsThanks for the added resource, @cvb. Are their education sessions available on their website?
yes they are just reference Dt. Willin and net team and their patient caregiver presentations are excellent. They had a lung net one with their lung surgeon Dr. Kaufman who is excellent.
Call Mayo daily and also ask to be put on cancellation list. We have been with Mayo since 2002 and have done this many times and quite often our appts get moved up. They don’t mind you calling daily at all. I hope you get seen sooner and that they can give you some answers.
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3 ReactionsI hope that you had diagnosed i had the same symptoms of cushing with normal pitutary MRI but there was mass in lung producing ACTH it was removed and the pathology result was NET after years a recurrance happend with metastasis in lymphnodes i took sandostatin lar for a year with no result now i am taking radition
if any one has a phone no. of NET i can disscuss with him because i am from sudan .
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2 ReactionsMy husband has Net that metastasized to his liver. We started at MGH but are currently at Dana Farber. We have had very good results from Dana Farber and they are close enough for our appointments. Wishing you the best.
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2 ReactionsWelcome to one of the world's crappiest clubs.
I'm in exactly your spot.
Many elevated endocrine markers, hyperparathyroidism w/2 adenomas already removed & it's recurring, many elevated tumor/inflammation markers. But each specialist only deal with their tiny piece of the puzzle. Where are the multiple endocrine neoplasia teams!
I'm going to insist on PET/CT with my PCP. Not with a MEN-specific contrast, b/c I could be wrong. They could be other tumor types or fibrosis of major organs like kidney or liver. I'M NOT A DOCTOR!
I sure would like one, though.
I'll fly/drive where I can order imaging myself, if need be.
Good luck. It's rough out there.
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3 ReactionsI was at Mass general last summer and they seem to employ the ‘let’s watch it grow strategy’ . They fiddled around for for month’s to get my sugar under control while my tumors doubled in size. My NET is an Insulinoma, pancreas to liver and was told not to worry, Liver failure is painless!
Go to Dana Farber ASAP, they have saved my life so far. Started chemo treatment’s immediately and reduced the tumors by 50%.
This is very confusing, at least it is for me, I never took medication for anything and can’t remember the last time I was sick until now.
Good luck, best wishes
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