About JaneRay1940

Aloha and welcome to the Wayward Bus! Let’s clear something up from the get-go: my name isn’t Jane and I was not born in 1940. You might know me from the Yahoo hyperaldosterone support group (where I go by the alias msmith1928, but that’s another story).

So yes, my presence here means I had hyperaldosteronism. I estimate that I had an undiagnosed tumor in my left adrenal gland for about 13 years. It made me fat and anxious and gave me hypertension and low potassium (which can kill you at worst, but at best will cause fatigue, muscle cramps, muscle weakness, numbness, or temporary paralysis – all of which I had). I had the tumor, as well as the entire gland, removed on October 13, 2011.

And like magic, my illness was cured. Well, until March of 2014, when the symptoms began coming back, suddenly and entirely out of nowhere. First the headaches. Then the vision disturbances. Then the hypertension. And finally, the fatigue, muscle cramps, muscle weakness, and numbness, confirmed by a low serum potassium test. At present my medical team can’t seem to figure out what to make of it – it’s not likely hyperaldosteronism in my other adrenal, since I do not respond to mineralcorticoid blockers (which actually ELEVATE my blood pressure). My potassium shifts are triggered, it seems, mainly by carbohydrate consumption and ingestion of medications and/or vitamins. It’s probably some sort of channelopathy, possibly hypokalemic periodic paralysis. By avoiding most dietary carbs and medications I’m actually managing pretty well right now, despite the fact that having no f*cking clue why this is happening isn’t exactly where I would choose to be… given the choice.

Entirely unrelated – at least as far as I know – to my adrenals, I’ve been dealing with food intolerances and malabsorption syndrome since birth. Born allergic to milk, diagnosed in adulthood with celiac disease and fructose intolerance, eating is tricky business for me. Between the ridiculously contaminated American food supply and the superpower known as Conventional Wisdom, it’s been a tough battle, but with the knowledge gained from having been a human being for over half a century, I am finally beginning to sort things out. More or less.

I eat eggs, coconut products, chicken, fish and shellfish, tofu, avocados, olive oil, nuts, rice in small amounts only, and most veggies. I can’t eat much of anything else. By choice I avoid most red meat, as I believe the hormones used in its production are not doing me any favors. I drink water, coffee (black), and tea (green), with an occasional tipple of something stronger once in a while because come on, life is short. Eating is, frankly, tedious as heck, and if a Magic Food Pill a la The Jetsons ever appeared on the market, I wouldn’t miss food one bit. Well, except for avocados; I like them. A lot.

14 thoughts on “About JaneRay1940

  1. I just wanted to say thanks for writing this blog. It is helping me immensely. I just read “what not to say” (a reminder) – so true! I am pleased someone else feels the same way I do!

  2. Hello! I just stumbled upon your blog. Which btw, thank you for writing. Have you found any holistic or natural remedies for hyperaldosterone in any of your findings? I am 27 with hyperaldosterone currently on verapamil and spironolactone. Soon I will want a child and cannot be on the meds. I haven’t found any information on alternative medicine. Background my kidneys look great no tumors no renal shrinking. Pretty much unknown etiology.

    1. Hello and thanks for commenting! Sadly, to the best of my knowledge the only treatment for PA is allopathic. If it’s a tumor, you need it taken out; if it’s bilateral, there’s not many options other than meds. I tried acupuncture, Chinese medicine, various herbs and so forth and – nothing, although I swear by acupuncture for the pain caused by my low potassium. And a very low sodium, very high potassium diet can help reduce or even eliminate the need for meds – the “brand name” diet is the DASH diet and many resources can be found for that via a Google search.

      I have zero experience with pregnancy but from what I understand, the rise in progesterone while pregnant can often suppress aldosterone – so, if you do become pregnant, you may not need meds during that time. However, I’ve also heard that some women with PA tend to develop preeclampsia toward the end of their pregnancies, so – I’m guessing this is a very individual thing.

      I’d highly recommend joining the Yahoo hyperaldosteronism group if you haven’t already – there are a number of women there who have experienced pregnancy while they had PA and they can probably give you better guidance than I can: https://groups.yahoo.com/neo/groups/hyperaldosteronism/info

      Good luck! And thanks for stopping by 🙂

    1. Why would they? Even when I had a suspected (and later proven) tumor, I never had an MRI – just an ultrasound, CT scan, and AVS. And that was so I could proceed with surgery. If my remaining adrenal has a tumor in it, removing it isn’t an option.

  3. I don’t know why, but you popped into my head today while I was eating breakfast and I thought I would stop by to see if you were still updating. So sorry to hear that you have to battle the unknown to find your way to health again. Gwen and I send lots of love and good thoughts to you.

    Be well!

    1. Thank you so much. Still battling, still updating… albeit infrequently, because there are only so many ways one can say “I don’t know” 🙂

      Hope all is well with you!

    1. Thank you Susan – I have not been officially diagnosed at this point (but am following treatment guidelines and so far that seems to be improving things). I’ve bookmarked the link and will check it out!

  4. Hey there – we’vve also “met” over at the Yahoogroup (NJRoadie). wanted you to know I also have huge uterine fibroids and liver hemangioma. I had the fiboroids treated nearly 2 years ago with the plug ’em up thru the artery technique known as UAE. Worked great. My OB also told me hysterectomy was the only option. She was wrong. 🙂

    1. Hi Jill, I remember you 🙂 Thanks for commenting! It’s amazing how little OBs know about the GYN side of things, isn’t it. Glad to know you found a solution – hoping I’m on to one as well.

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