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Diagnosed with Low Renin Hypertension. When should I see an endocrinologist?

Posted by @dawn_giacabazi, Apr 8, 2016

Been alittle while since I have visited the group. Several to Mayo clinic & hospitalizations. Still the endocrine system baffles me! Left adrenal gland over producing aldosterone with level 32 but right side has approx 2cm myolypoma,level 4. Hyponatremia, hypokalemia, 5 HTN drugs to try to control blood pressure. When or do you consult with an endrocrinologist?

REPLY

Hi @dawn_giacabazi, and welcome back to Connect.

You wrote about Low Renin Hypertension in November – is this still the diagnosis you’re managing? Have you been seeing a specialist at Mayo Clinic? I’m including a link to Mayo’s endocrinology department, which has a list of endocrinologists. You can click here (http://mayocl.in/1mtmR63) to make an appointment. I’m also tagging @azslp and @ellensa who have wrote about their experiences visiting Mayo’s endocrinology doctors.

They have since changed my dx to secondary aldosteronism, hyperkolemia, hyponatremia, severe resistant hypertenson. Right adrenal gland mylapoma lypoma. I guess my question is – At what point is endocrinologist consulted or is this not an issure for that department? Whats the best practice in that referral process?

@alysebrunella

Hi @dawn_giacabazi, and welcome back to Connect.

You wrote about Low Renin Hypertension in November – is this still the diagnosis you’re managing? Have you been seeing a specialist at Mayo Clinic? I’m including a link to Mayo’s endocrinology department, which has a list of endocrinologists. You can click here (http://mayocl.in/1mtmR63) to make an appointment. I’m also tagging @azslp and @ellensa who have wrote about their experiences visiting Mayo’s endocrinology doctors.

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Hi, Alyse.

Yes, I was a patient at Mayo Clinic – Rochester from 2000 until 2012. I then saw doctors at Mayo Clinic – Jacksonville in 2013. My core issues are thyroid cancer, so I visited with an endocrinologist at each facility and also had 3 related surgeries in MN. And over the course of 13 years, I had appointments with many other specialties as well. I love Mayo Clinic and always recommend it when I hear of someone’s serious health issues that aren’t being managed well.

The reason that I have moved on from Mayo Clinic is that my endocrinologist left Mayo in 2012. That’s when I moved my care from MN to the Mayo FL facility (much closer to my home in GA). But ultimately I followed my endocrinologist and am currently a patient at his new facility.

Thanks for checking, and I’m very happy to report on my positive Mayo experiences at any time.

Dawn – you’re asking all of the right questions. I would also want to know what the proper next steps were. But since each person’s diagnosis is different, I would suggest talking with your primary care physician or the physician who changed your diagnosis. Did they recommend you see an endocrinologist?

In regards to best practices for referrals, the folks in the appointment request department (http://mayocl.in/1mtmR63) should be able to give you answers specific to your case since you’re a patient at Mayo Clinic. Please let us know what you find.

Thanks

Happy to report meds are finally working. Spironolactone kicked in so we’ve been able to reduce the other medications. Done to only 3 medications and feeling better. Left side of the adrenal gland still over producing Aldosterone but the levels have reduce a bit. 🙂

@dawn_giacabazi

Happy to report meds are finally working. Spironolactone kicked in so we’ve been able to reduce the other medications. Done to only 3 medications and feeling better. Left side of the adrenal gland still over producing Aldosterone but the levels have reduce a bit. 🙂

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Throwing confetti! This is fantastic news Dawn. Keep us posted.

Update!!!! So FINALLY have an appointment to see endocrinology 7/20 .. Seen Urology today they believe I have a lesion in the bladder exspected to be the cause of my fainting spells during urination. You know it’s probably not a good thing when your doctor says to you, “You know your the patient they write the addendums about” lol. 😉

Fainting spells during urination? That sounds concerning. What are the next steps about the lesion on the bladder?
I’d like to see those addendums 🙂

So the fainting spells are called a micturition syncope episodes they suspect it is from a neuroendocrine tumor. I will have a cystoscope for biopsy then see Dr Chang, endocrinologist on the 20th. They will keep me over night for observation because of my blood pressure and heart rate instabilities. He is quite sure once the cut to get the biopsy my BP will ho crazy. My body really hates anesthesia. 🙁 It thinks it’s auditioning for Sleeping Beauty. Lol

As for the addendums he was kidding around (I think). He was giving me a hard time about it so complicated to treat and there was no way he was touching me. 🙁

Dawn, I have been waiting for this welcome update on your status and see solid grounds for encouragement. I had similar experience with my urologist and anaesthesiologist; within a few days after biopsy in my bladder, they were joined by my nephrologist and her chosen endocrinologist for post-operative care and diagnosis focused mainly on my blood pressure. It didn’t act up as expected! Differences between us metabolically obviously will lead to different experiences, but I am strongly confident that you’ll come through this with renewed confidence of your own that your doctors are getting things right and under control. Best wishes for your cystoscope procedure and your new relationship with Dr. Chang!
Martin

@predictable Thank you Martin. It’s been a bit rough lately. Heart rate this morning 180 – horrible headache but normal sinus rhythm. 🙂 But God is good and it says he only gives us what we can handle. So I will dig deep and get through this. 🙂

Headed to the doc to get the results of my weekend testing. 24hr urine & CPK. Weekend was full of severe muscle cramps all over my legs and my abdomen.

Heading back up to Mayo Clinic Rochester in 2 weeks. 🙂

Update:

Back to Mayo clinic Aug 4 & 5

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