RE: Re: New to this club~update...

[Guest guest]

Yes May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jan 17, 2012, at 21:18, maggiekat7 <ljurkovic@...> wrote:

Thank you, I told the neph doc that I had a horrific reaction to dye when I was 14 during an angiogram, but she assured me that dyes have come a long way since then and seemed quite confident that I wouldn't have an issue. What good does the contrast do? Can they see what they need to without it? Is there a way to support the kidney to deal with the dye?

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> From: maggiekat7 <ljurkovic@...>

> Subject: New to this club~update...

> hyperaldosteronism

> Date: Tuesday, January 17, 2012, 7:59 PM

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> Well, I guess I'm an official member of this club....Doc 2 (Cardio) diagnosed me with secondary hypertension and primary hyperaldosteronism.

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> Doc 3 finally called me back and said that new labs ruled out pheo, but confirmed supressed renin and high aldosterone. Thus, hyperaldosteronism as well.

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> Nephrologist Doc 4 this afternoon ordered an MRI/MRA with contrast as a next step to determine unilateral/bilateral, adenoma, or hyperplasia or possibly nothing to be seen on the adrenal glands. Doubled my Norvasc, said to stay on the Losartin. BP 160/109 on One Norvasc and 100mg Losartin. Guess I stay on the K tabs too. None of them want me to start the Epler (which on my ins. is the same $10 copay as Spiro, all docs will give me either, up to me) until after scan. They all now say that I may need AVS after scan and don't want me on Epler until after AVS. Potassium good now 3.9 on 4 ktabs. Sent me for more labs...magnesium, uric acid, bunch of other stuff I've never been tested for. When Doc 3 called, he said that he had to do a literature search in order to figure out my labs, and had to consult a radiologist in order to know what kind of scan to do. His office later called and said he wanted to send me for a CAT scan with and without contrast.

> Doc 4, Neph, knew all about renin issues, hyperaldosteronism, adenomas, hyperplasia, talked to me for 2 hours....for now, she is the captain of my ship. So, I am staying on BP meds that are doing a marginal job of managing BP, and getting the MRI/MRA with contrast very soon.

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> I found out that NIH has studies that will evaluate and treat this for free. Then I looked at MD , and they eval and treat this as well, even benign issues. Winship at Emory has a team dealing with it as does Mayo. I applied for an appt. at both MD and Winship because if I do the AVS, I may consider those places. Winship is here where I live, and I go to MD all the time anyways because my step Mom has end stage cancer and is being treated there. It's my home away from home and I have a lot of regard for them. My goodness, my stepmom was supposed to have 6 months to live in 2008! MD already responded to my request.

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> So, guess how I got Doc 3 to call me back? I called Doc 2 (Cardio) and knew that she wanted to consult with him, so I called her office and asked if they had consulted and if he'd sent the labs drawn last wed.? Told her office that I had called them Friday, Monday and again this morning but hadn't gotten a return call, didn't know if the labs were back or not, nothing. Then, I called the Doc 4 (neph)'s office and told them the same thing and that I assumed that she would want those labs before our consult, wouldn't she? Maybe she could get them, as I could not even get them to call me....then the Doc himself called me with the labs!

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> Amazing.

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[Guest guest]

I've had two CTs and an MRI, none done with contrast. There are apparently times when contrast is required but I don't think looking for an adenoma on an adrenal is one of them. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of maggiekat7Thank you, I told the neph doc that I had a horrific reaction to dye when I was 14 during an angiogram, but she assured me that dyes have come a long way since then and seemed quite confident that I wouldn't have an issue. What good does the contrast do? Can they see what they need to without it? Is there a way to support the kidney to deal with the dye?>> Please be aware that there are a couple of us on this hyperaldosteronism site who have kidney problems due to contrast dyes being used on CT scans.