Virginia's Hyperaldosteronism

[Guest guest]

Dr. Grim: Recall that she has 3 small kids and needs to get back ASAP. AVS can be done later if indicated.  But I have only been doing this since 1963. So it is her choice on his soon she wants to get better and caught up. Then the fine details can be worked out I would think.

Serum sodium is high only is Grim stage 4 PA IE ADVANCED cases.

I think you're in line with what my PCP was thinking.  He doesn't like my BP being this high for this long (obviously many others in the group have much higher BP's than I do, but my PCP has been my Dr. since I was a baby and hasn't liked my BP progression in the last 4-5 years).  He just wants to get me under control and quit screwing around.  I will discuss with him this week before I make any decisions about the spiro, especially considering it's going to be another 4 weeks before I even have an initial discussion with my new endocrinologist.

 

I have read your " evolution of PA " paper a couple of times but I'm still trying to understand everything. I was worried I might be at stage 4 already becuase my K has been so low, especially with trying so hard to have a high K diet & the ridiculous amount of supplements I've been taking.  But maybe not?  I know my BP doesn't even seem that bad compared to everyone else I've been reading about.

 

Dr. Grim: You might remind your Indian Dr that I saw the first ever reported Indian with PA WHEN I was Dr. Conn's Fellow in 1969. He can with a letter of introduction from Indira Ghandi. He was so week he was in a wheel chair. Stayed till surgery done and walked out without the WC. IF SHE Searches JW Conn and PA Pt in Indian lit she will see it. Published in 1972 or so.  She must have missed class on PA day. But we will get her up to speed. My one on one consulting fee is only $500 for a year. Can be paid in $100/month till done. Most are back on their feet in 3 months. Wish u had found us earlier.

 

I think I would be a fool to not consider having you consult on my case.  Let me work out the logistics and also get my PCP on board. I discussed with my husband though and our initial impression is we would like to work it out. 

 

 I don't think I will be seeing endo #1 again now that I have been referred to endo #2...but my PCP still works with her regularly.  I'll pass along your article and leave it up to him to update her maybe? 

 

Dr. Grim: If possible you might be able to get there quickly. Contact them now to see. Then you have the answers in about 10 days in DC.

 

Referring to NIH?  They are located in D.C.?  10 days....and travel....right now that seems like such a big committment.  But the thought of having sooner treatment is very tempting too.  I wonder if I should see how my initial visit with WASHU Dr.'s go and if things seem to be moving in the right direction?

 

Dr. Grim: If u are nursing would not do the Spiro. The urine numbers we need the 24 hr volume but first glance you are DASHING very well. As mor K in urine than Na. But need the urine volume on that sample.

How many times a night do u get up to pee?

Unfortunately I had to stop nursing anyway because the excess K would have probably killed my son by now (his levels were at 7.8 and I stopped nursing immediately).  Right now my son's Dr.'s (PCP & Hematologist) are not considering letting me nurse on spiro, we will see if his formula continues to cause him to need blood transfusions (due to his G6PD the soy might be contraindicative for him--no commercial formulas in the US made without some form of soy) they might consider letting me nurse again if I am only on spiro.  Dianne had mentioned maybe contacting LeLeche League for breastmilk, but unfortunately for my son he cannot have certain substances that would normally be OK for breastmilk, like aspirin or fava beans, if the donor had consumed these it would be lethal for my son.  I've considered trying to do a " 1-on-1 " breastmilk donation where I work directly with the donor mother, but with everything going on these things are difficult to arrange.   

 

Hopefully the 24 hour urine test will be in the lab work I asked endo #1 to mail to me and I should get it in a few days.  I didn't see a volume on the urine sample I had mentioned, with my levels at 74.4 for K and 37 for Na......I might just not know what I'm looking for.  I will submit the 24 hour results as soon as I get them though.

 

When I first went to the Dr. about 8 weeks ago I was easily peeing 4-5 times a night, and as I had mentioned previously, drinking about 2 gallons.  I am now drinking only about 1 gallon a day, and usually I get up once a night to pee.  Sometimes 2x.  Just out of curiousity, why does that matter?  I'm assuming increasing my K has helped with the " extreme thirst " symptoms?

 

 Dr. Grim: Chance is not zero but very low and am not aware of bilateral Ca causing Conn's.  But may be a report somewhere. Put that at the bottom of your worry list.

 

 That's good to know.  Do they usually diagnose ademas being malignant after they are removed? 

 

Thanks Dr. Grim for all of the feedback. 

 

-VIRGINIA-