Interventional radiology.

My date for a consultation with the interventional radiologist is next Wednesday. Apparently in addition to discussing AVS, the possibility of embolization of the adenoma, rather than surgery, will be considered. This caught me by surprise, as this is the first I’ve heard of it.

A quick lunch-break Google yielded a promising article:

Aldosteronomas: Experience with Superselective Adrenal Arterial Embolization in 33 Cases (link opens PDF)

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Insulin resistance and aldosterone.

Two doctors familiar with my case are convinced that my insulin resistance will go away as soon as the aldosterone overproduction is stopped, whether it is by surgery or eplerenone. I don’t want to get my hopes up, but – what can I say, my hopes are up 🙂

Here are a few relevant articles on the relationship between aldosterone and insulin resistance and/or Type 2 diabetes:

Role of aldosterone and angiotensin II in insulin resistance: an update (link opens PDF)

There is abundant evidence linking aldosterone, through non-genomic actions, to defective intracellular insulin signalling, impaired glucose homeostasis and systemic insulin resistance not only in skeletal muscle and liver but also in cardiovascular tissue.

Insulin Sensitivity in Patients with Primary Aldosteronism: A Follow-Up Study

Conclusions: Insulin resistance is present in patients with tumoral and idiopathic aldosteronism, but the defect appears less severe than in patients with essential hypertension. Treatment with surgery or aldosterone antagonists restores rapidly and persistently normal sensitivity to insulin.

Salt, aldosterone, and insulin resistance: impact on the cardiovascular system (link opens PDF)

Current clinical knowledge points towards an impact of salt restriction, RAAS blockade, and MR antagonism on cardiovascular and renal protection, but also on improved insulin sensitivity and glucose homeostasis.

One step closer to AVS.

I’m in the midst of scheduling a consultation with the interventional radiologist who will be doing my AVS. I’ve been reading tons of abstracts that make me certain that having this procedure first, rather than skipping straight to the surgery, is the way to go.

However. I’m going into it as fully educated as I can be, so I’m constantly on the lookout for more information. I thought this merited sharing here – a PDF of a consent form for the procedure from another hospital (not the one where I will be having it done), most notably, the risks:

Risks associated with the procedure include, but are not
limited to, pain or discomfort at the catheter insertion
site, bleeding at the site, injury to a blood vessel,
infection which may result in an infection of the blood
stream, the development of a blood clot (embolization),
and stroke. Risks associated with the x-ray contrast
material include an allergic reaction and reduced kidney
function. The medications used for the moderate
sedation are associated with the risks of aspiration
(inhaling food or liquid into your lungs) or respiratory
depression. In addition to these potential risks
associated with the procedure, the x-ray contrast
material, and the moderate sedation medications, there may be other unpredictable risks including death.

Hmmm yeah. I guess they’re legally bound to throw that “death” bit in there.

Also of interest was the description of the procedure:

An adrenal venogram involves the placement of a
plastic tube (catheter) into a vein in your leg near the
hip. Some numbing medicine will be injected in the
skin over the vein that will be used before the
catheter is inserted. Intravenous medications may
also be given to you to make you more comfortable
and relaxed. This is known as moderate sedation.
Once the catheter has been placed into the vein, it
will be advanced through the blood vessels. During
this time, x-ray contrast material (x-ray dye) will be
injected through the catheter and x-ray pictures
taken. You may be asked to hold your breath for
several seconds as these pictures are taken. During
the injection of x-ray contrast material, you may
experience a warm feeling or a strange taste in your
mouth. Both of these sensations are temporary and
will go away soon. After localizing the adrenal
veins with the venogram, blood will be drawn
through the tube and sent for laboratory studies. The
laboratory studies take a week or more and the
results will not be available today. At the
completion of the venogram and blood sampling, the
catheter will be removed and pressure will be
applied to the insertion site until the bleeding has
stopped. To help prevent bleeding, it will be very
important for you to lie flat in bed without moving
your leg for two hours.

You know, I’m almost more worried about the “lie flat in bed without moving your leg for two hours” bit than the rest of it! Stillness was never my area of expertise.

In conclusion, though – it’s not as if I have much choice. This consent form spells that out in no uncertain terms:

There is no alternative to adrenal vein blood sampling.
You may choose not to have the procedure done, and the
cause of the elevated aldosterone in your blood will not
be determined.

 

Eating and PA.

I’m still waiting for my specialist to make contact with the interventional radiologist who will be my physician of choice for the AVS. Waiting is annoying, quite frankly. Equally annoying is dealing the restricted food options for someone with untreated PA.

Food is already challenging enough for me as it is – I have a condition called fructose intolerance, which essentially means I can’t metabolize fructose. Fructose is, of course, in just about everything that comes out of a package in the American food supply, as well as plain old table sugar. But nobody should be eating that stuff anyway! Sadly, though, it’s also in most fruits, many grains, and even some vegetables. I’ve been dealing with this for a long time and it’s not usually that big of a deal.

But PA presents a whole other aspect of food restrictions: sodium. Again, it’s in everything and anything that comes out of a package in the American food supply, but it’s also naturally occurring in… well, just about everything.

PA causes salt (and water) retention. I think it’s pretty well-known that restaurant food tends to be over-salted. For me, a single restaurant meal can mean the difference between my clothes fitting or not – I’ve noticed an average water weight gain of 2 pounds when I eat out, but I’ve seen this go as high as SEVEN pounds. In addition to clothes not fitting, my blood pressure goes up, I get headaches, I feel bloated, and tend to get nausea when this happens. Bottom line – it’s not worth it, so I’m limiting my restaurant eating to “only when there is no other choice.”

The recommendation is that anyone with PA should keep their sodium intake under or around 1500mg/day. I’ve used Fitday to track mine, and interestingly, even adding absolutely no sodium to my food (which is mostly eggs, nuts, chicken, fish, and leafy green veggies, and nothing else) I’m still on the high side of 1500mg, and this on only around 1300 calories a day. So, even if you think you’re eating “no sodium,” chances are you aren’t 🙂

Here is another perspective on dealing with eating when you have PA, as well as some other general recommendations. I don’t completely agree with everything she says, but then, we’re all different with this disease. Caffeine doesn’t bother me, so I continue to drink coffee and green tea. And as for Gatorade and the like – since they are made with high fructose corn syrup, I wouldn’t drink them under any circumstances. I did find it interesting that she advocates avoiding sugar as well as salt – since I can’t eat sugar and haven’t eaten it in many years, I have no idea how it would affect me now that I have PA. Personally, I think we all would do well to restrict or eliminate sugar and sodium as much as possible, whether we are hypertensive or not.

Post-op clinical study of PA patients.

I’m waiting for my doctor and his interventional radiologist of choice to stop playing phone tag and actually talk to each other regarding my (hopefully) upcoming AVS. Nothing to update in that department.

I did run across one – one! – study that followed patients who had laparoscopic adrenalectomies for several years after their surgeries. There are lots of facts and figures and charts, and the article can be found here:

Small tumor size as favorable prognostic factor after adrenalectomy in Conn’s adenoma

A few takeaways that are relevant to me (bold is mine):

In the last few years, several studies highlighted the negative effects of aldosterone excess on the heart, the blood vessels, the kidney, and the brain (4, 5), as well as on the glucose metabolism and insulin sensitivity (6, 7), indicating the need for a prompt diagnosis of PA and a correct therapeutic approach.

My doctor seems confident that my insulin resistance issues will resolve post-op, so, this sounded hopeful to me.

It is noteworthy that in the present study we found that small adenomas were responsible for higher aldosterone levels (both in the upright position and postsaline) and for lower serum potassium levels compared with adenoma bigger or equal to 20 mm diameter.

This seems counterintuitive – the bigger the tumor, the more aldosterone, one would think, right? Apparently not. Mine is only 1cm.

In conclusion, in order to avoid inappropriate and prolonged therapy and to prevent irreversible organ damage, an early and correct diagnosis of APA is mandatory, as in a high percentage of cases diagnosis means recovery.

This one has me worried, a little bit. What is early and correct diagnosis, anyway? And what’s this about irreversible organ damage?? The average time to diagnosis in the United States is 6 to 9 years, I’ve heard. The article posits that the maximum time before diagnosis averages a maximum of 6 years in patients whose surgeries were successful. I was diagnosed with hypertension – incorrectly and treated incorrectly, of course – almost 10 years ago, but showed early signs of PA closer to 15 years ago.

Assuming surgery is indicated, none of this is enough to talk me out of trying it. According to this article, I have a lot going in my favor – gender, low BMI, and only moderate (not severe)  hypertension, not to mention the fact that my adenoma is only 1cm.

I’ve talked to a few PA patients who had adrenalectomies and still needed meds post-op. All of them desccribed themselves as sedentary and admitted to needing to lose a few pounds. One of them was over 60; the other two were in their 40s. They all seem to fit the profile of the typical patient whose surgery is not 100% successful – age, activity level, and weight  are all factors that could contribute to essential hypertension, which I am pretty certain that I do not have. Additionally, I think I’ve talked with 3 or 4 others whose surgeries *were* successful and who no longer need any meds.

I only wish I had more to go on than a lone study of 42 patients, combined with the few that I have conversed with personally. Better than nothin’, I guess.

ETA: another full-text article can be found at the link below. This one followed 52 patients.

Factors determining cardiovascular and renal outcomes after adrenalectomy in patients with aldosterone-producing adrenal adenoma.

(Scroll to the bottom, there is a PDF link.)

 

Aldosterone suppression test – the aftermath.

I thought I’d escaped from the aldosterone suppression test entirely unscathed, but I may have spoken too soon. Still, this is no big deal, but I thought I’d put this out there in the interest of fully documenting everything.

A couple days ago I woke up with a bright red spot in my left eye. Apparently it’s a subconjunctival hemorrhage, likely caused by the elevated blood pressure during last week’s testing. If it doesn’t go away, or if another one shows up in the other eye – well, then I get to worry. For now, it’s “wait and see.”

Perhaps more annoying is the 4 pounds I gained as a result of the sodium ingestion that are just not going away. When you’re as vertically challenged as I am, that’s practically an entire clothing size.

Needless to say, I’m more uncomfortable now that I was during the three days of sodium loading. But hey, it could have been worse, so I can’t complain. At least not too much.

Subconjunctival hemorrhage

AVS – a successful account.

I’ve been reading accounts of AVS over at the Yahoo Hyperaldosteronism message board (member-only, but easy to join). There has been a bit of debate as to whether or not AVS is necessary – lots of talk of skipping it and going straight to surgery. There have also been accounts of people whose PA turned out to be bilateral, something that can only be found via AVS. The following is from one of those people.

I had my AVS done at the University of Michigan by Dr. Cho, an interventional radiologist. Different hospitals have different protocols, some want you to go off all medications before AVS but the UM does not. I was very glad to hear this since I feel very, very bad when not taking spiro. Dr. Cho spoke to me in the pre-op area and told me that he had done over 600 AVS and explained the test to me in detail. He also explained potential complications, including rupture of a vein, infarction of an adrenal gland and adrenal hemorrhage – all which would require admission to the hospital. He was pleasant and answered all my questions in an unhurried manner.

I signed my permit and the nurse started an IV and took my vital signs and a brief history of my problems. When I was taken to the procedure room I was given 1 mg of Versed and 50 mcg of Fentanyl, which made me feel quite mellow. I was not asleep during the procedure but felt no pain. A local anesthetic was injected into my right groin and I felt only slight pressure when the catheter was inserted. I could see the catheter being manipulated on the fluoro screen and it was interesting to watch. They took blood samples from the various areas and had no problem cannulating both of my adrenal veins. After the catheter was removed a tech held pressure on the area for about 10 minutes, then applied a bandaid to the site.

In the recovery area I had to lie flat for one hour and keep my right leg straight, but that did not keep me
from scarfing down a sandwich and juice. My vital signs were monitored for one hour and then I was discharged. I was told that I might have some minor pain in the groin site but Tylenol should take care of it. I had no pain at all and the next day could barely see the insertion site when I removed the bandaid.

My AVS was a piece of cake but I realize others have not been as fortunate. My advice to anyone having an AVS is to ask the radiologist before hand how many AVS he has performed. Then ask him how many were SUCESSFULLY performed and what his complication rate is. Also, get a price first or have very good insurance. These puppies ain’t cheap and the price varies tremendously. One member here got a bill for $27,000 for his AVS.

That’s basically the best I can hope for. Doesn’t sound *too* scary, except for that bit at the end about insurance.