The mystery continues.

2 days off of eplerenone and 4 20 mEq doses of potassium later, I can say that I feel (almost) back to normal. Blood pressure is running consistently 120s-130s/70s-80s, just like a normal person. Muscle spasm and headache almost entirely gone.

And while overall that’s good news, the following questions remain:

  1. Why did eplerenone, an anti-hypertensive, cause my BP to go up?
  2. Why do I keep dumping potassium?
  3. Why do I have mildly elevated aldosterone and mildly low renin, if I’m not responding positively to the category of drug typically prescribed to treat this?

And yeah, there are probably more questions. And there are probably no answers in sight for the foreseeable future. And I’m exhausted just thinking about it.

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Interesting study of PA patients.

It’s a small study of just 26 patients, but worth a read: Evolution Features of Hypertensive Patients with Primary Aldosteronism. Treatment of patients with unilateral (what I had) and bilateral disease was compared. What I found most notable was the three deaths in the study group, all of them patients with hypokalemia.

Hypokalemia (low potassium) was, for me, the biggest risk factor, and the one that was most ignored – when I was first diagnosed with low potassium (nearly three years before I actually received a PA diagnosis!) I had actually had it for 3+ years running, yet not a one of the doctors I saw during that time mentioned it or treated it.

It sounds a bit dramatic to say this, but the whole time I was sick, particularly the last 5 years of my illness, I felt like I was going to die of whatever I had long before The Experts figured it out. All that The Experts could see was the hypertension, despite the fact that in terms of lifestyle I was a textbook picture of health – not overweight, didn’t smoke, didn’t drink, didn’t eat junk food, etc. The Experts were so blinded by those systolic/diastolic numbers that they couldn’t see the real killer at all.

Reader beware.

I’m not going to name it or link to it, as that would add legitimacy in Google’s eyes, but – there’s a blog out there by a patient with an adrenal tumor that has recently come to my attention, and frankly, I find it really disturbing. That being said – consider the following to be just my opinion; what works for me may not work for you, and vice-versa. What I believe may not fit your belief system, and vice-versa.

Once again, the following opinion is mine and mine alone.

The blog’s author claims that she was scheduled for surgery but then was pointed to a nutritionist who could “starve her tumor” via a dietary approach, so she called off her surgery. She provides the nutritionist’s contact info, but it is ambiguous as to whether or not she is actually trying to sell his or her services. She provides some detail about the diet, which looks like a hybrid of Paleo/Primal eating combined with some herbal stuff. There is nothing wrong with any of this per se; as most of you know, my diet looks pretty much like this and I believe most PA patients could benefit from ditching processed foods (this means you, bread and pasta and baked goods!) and eating real foods and more vegetables. BUT – and this is a BIG BUT – I would never, never claim that it will “starve a tumor.” Because you know why? That just isn’t good science.

I’m no doctor. Heck, I don’t even play one on TV. But I do know that a tumor is a genetic mutation, and your genes don’t care if you are eating green kale smoothies or Swanson’s TV Dinners – if you lose the gene lottery, congratulations, you have a tumor! And while what you eat can influence how that tumor behaves, it will not – I repeat, it WILL NOT – make the tumor go away.

Most of us with PA learn that sodium makes us feel like crap. This is because it provokes the tumor to produce more hormones which make us sicker. Similarly, the type of breast cysts that I have are believed to be influenced by estrogen, so I minimize plant estrogens (soy products) in my diet. But in both cases, elimination of dietary sodium or dietary estrogen will NOT make the tumor or cyst go away; it will just minimize the damage done.

Thanks to my food intolerances, I ate a diet very similar to the one addressed on the blog-that-shall-not-be-named for close to 15 years while the tumor was still in my body. And outside of some misguided side trips involving hypertension meds before I actually had a correct diagnosis, I got by without medication most of those years. While I have no way to know if the tumor got bigger, I do know that as the years passed, my symptoms got worse and worse, and by the summer of 2010 – 13 years after my first ER visit for PA symptoms – my low potassium came close to killing me (saved only by ER visits and electrolyte drips) regardless of how many heads of kale I ate.

I may have some added difficulties to a dietary approach to tumor management thanks to damage caused by a lifetime of undetected celiac disease – I am unable to fully absorb nutrients from food like a “normal” person would. So this may complicate things, but – in my own experience, combined with the experience of the dozens of other PA patients I know from the Yahoo group, managing an adrenal tumor via diet alone is not a one-size-fits-all solution. While a processed-food-free, low sodium, high potassium diet is a GREAT idea for ANYONE, it is not a magic bullet that will “starve a tumor.”

The aforementioned blog – okay, the blog-that-shall-not-be-named – appears to me to be sketchy enough that nobody would take it as actual medical advice. But then I’m trained in this stuff – I’ve got a master’s in Information Science and I keep a roof over my head by knowing how the Internet works. And I am constantly surprised by those around me, often with advanced degrees in fields other than my own, who are unable to discern between a legitimate website and one that is… less than legitimate.

My intent here is not to bash what works for someone else – just to point out that, with our often-misunderstood condition, one should use extreme caution when following the advice of others. (Including my advice!) Think critically and think analytically. Keep science and facts in mind. And with your tumor, as with life itself – if it sounds too good to be true, well, I hate to break it to you but it probably is false.

 

Brave.

While I’ve tried to keep my posts here more general and less personal, tonight I’m going to make an exception. Although what I am about to write is specific to me, right here, right now, I decided to post it here rather than on my personal blog because I’ve got a feeling that some of what I have to say may resonate with others who have or have had PA.

A few weeks ago, a friend’s ex-husband killed himself. When my friend was telling me about this, somehow her words segued into talking about me and my illness and how she thought I was so very brave to have remained so stoic throughout it all, and that most people couldn’t be that brave, certainly she couldn’t. Frankly, I’ve felt like an impostor ever since.

There are days – today has been one of them – when I am anything but brave, anything but stoic. I am, however, honest to a fault, and I will look the beast that is tormenting me right in the eye and acknowledge that it sucks: it sucks that I spent a full one-third of my life sick with an undiagnosed illness. It sucks that I can’t see worth a damn at night yet I continue to drive because the law says that I can. It sucks that I have a weird tumor in my liver that I am not quite convinced isn’t the source of the other health issues I have, even though my medical team insists that it’s nothing to worry about. (Remember, my last medical team insisted that I didn’t have PA when I knew full well that I did.) And I know that despite all of the above, it could still suck so much worse. So if acknowledging that it could be worse and getting on with my life is bravery, then, maybe. But I’m doubtful.

I was sick – really, really sick – for a full 15 years of my life that I know of, probably longer. My first PA-related visit to the ER occurred three months after my 30th birthday; my actual diagnosis of the disease did not occur until I was midway though my 45th year. If you think about it, those are the years during which most of my peers did the things that really mattered: find partners, have families, travel, attend grad school, build careers. While much of that has never been of much importance to me – I’ve known since I was a small child that I had no business passing my genes on to another generation, so the partner/family/kids thing was out – I did spend 10 of those 15 years in a very, very unhappy relationship, and I did go to grad school, but I did both of these for all of the wrong reasons.

I’m not going to delve too deeply into the partner thing other than to say that even though the choice to end it was mine, I came out of that relationship feeling like a real loser for being unable to make it work. Half a year later when I was diagnosed with PA, it all became clear to me that I wasn’t a loser and there was a very real reason why I couldn’t make it work, and I was fine with all of that and got on with my life. Well, got on with the business of getting tested and operated on and so forth. But now that all of that is behind me, I’m sort of mourning the loss of those ten years, not only to an illness but because of how different things may have turned out had I had the strength to walk away sooner rather than later.

As for grad school – I always knew I’d go to grad school, and knew it would either be for library science or for history. I chose the former because it seemed more practical. Um… it wasn’t. I hated every minute of it and now that it’s over and done I’m pretty certain that I will never actually use my library science degree to work in a library, my student loans will follow me for the rest of my life (and well into the afterlife). While it wasn’t an entire waste of time – part of why I have a reasonably steady job now is the degree, even though it’s by no means necessary to have one in order to do what I do – in retrospect, I can only wonder WHAT WAS I THINKING?!

And that – what was I thinking? – is precisely the point of why I am posting this at all. Nearly two years to the day since my PA surgery, I know full well that ever since the moment I came out of anesthesia, my brain works in a very different way than it did while I had the tumor. And some days – again, today is one of them – I can’t help but wonder what choices I would have made had my brain been working at its full capacity, rather than in a PA-addled fog of inertia.

So there you have it. Going through an illness, getting tested, having surgery – all of that is a walk in the park compared to what I’ll refer to as real life. What requires bravery is facing the latter, full-on, eyes wide open, making well-informed choices and seeing them through. And while I’m capable of this now, what is bothering me right now are the 15 years of my life during which I wasn’t – while I was sick, nearly every decision I made was at the time the safe choice rather than the right choice.

There certainly was no bravery involved.

National Institute of Health info for PA patients.

The following is an edited version of a post on the Yahoo hyperaldosteronism group that I felt was too good not to share. While I thought I had a hard time with my PA diagnosis, after following the stories of others on the group over the years, it turns out mine was basically a walk in the park in comparision. When I was frustrated with the response of my medical team, at one point I came close to cashing out my 401K to fund a trip to NIH (to pay my way as well as a friend’s) – I ended up not having to go that route, but had I known some of the following I might have approached things differently.

~ ~ ~

“In my journey to find the right answer as to whether or not to have an adrenalectomy, I decided to contact NIH.  I was surprised to learn that NIH will take a look at the medical records of PA patients, for free, if you are needing advice on whether or not to go forward with surgery, based on testing you’ve already had.  Or you can speak with them before you’ve had anything done to see if you might fit into one of their protocols of research, as many of you already know.  I got the name & number of Dr. Richard Chang, Interventional Radiologist (who does some of the AVS procedures at NIH), thanks to John (in our forum).  When I called Dr. Chang’s office at 301.401.0256, I first spoke with an assistant named Micheal Walters who was very kind and encouraging.  Dr. Chang soon called me back and asked me to email any and all records.  I did just that and he forwarded them on to the other endocrine doctors who reserach and treat PA there at NIH.  One of those doctors is Dr. Lyssikatos, who contacted me just today.  He asked me to order my CT abdominal scan as well as the AVS CD.  They want to view those before advising me on whether or not I might be a candidate for surgery or repeat AVS.

Dr. Lyssikatos advised that one must be off Spironolactone  2 1/2 to 3 months prior to AVS!!!  I was only off 1 month!  Eplerenone is only 4 weeks discontinuation before AVS. He also told me that the Metaprolol my cardiologist placed me on, prior to the AVS, affects Renin levels. 

The downside to using NIH is that you are have to pay for a plane ticket and if anyone comes with you they will have to rent a hotel & pay for their own food.  Everything else is paid for.  I wouldn’t normally trust a government funded facility (the VA comes to mind) but I’ve done my research and thanks to many in this forum, I feel very confident that NIH has probably the most experience doing these procedures.  Dr. Chang told me he generally does an AVS 1 x week.  Also, if you have complications after the surgery after you’re back home, you’ll need to make arrangements ahead of time with a surgeon or endo who is willing to do followup care.  The upside is the great treatment you will receive while there (massages – oh yeah!).  They don’t toss you out of the hospital the next day after surgery, as so many hospitals do.”

 

Wait, not so fast.

Met with the surgeon, who sent me for a CT scan today. An hour later he called me and asked if I wanted the good news, or the bad news first.

I opted for bad, at which point he started talking about my hepatic hemangioma. Been there, done that, ignoring it for now – yeah, I’m being pretty blase about a cyst the size of a strawberry in my liver. But my primary care doctor strongly believes it’s harmless, so I’m going with it.

The good news – the CT scan showed no evidence of an incisional hernia, so, I’m not being rushed off to surgery next week. HOORAY for that. But the scan showed considerable scar tissue from my adrenalectomy, which is now being blamed for my current painful situation. And which there really isn’t much to be done about.

To me, that last bit is actually the bad news – nothing much to be done about it. And if that’s as bad as it gets, I’LL TAKE IT. Not sure if this is the end of it or not; I’m meeting with my primary care doctor on Wednesday to find out more.

Whew. Dodged that bullet. Now if someone could only just stop this pain in my belly… 🙂