Permanent kidney problems?

[winston]

A little bit of backstory seems customary;  After a lifetime of "IBS", ad-hoc dietary restriction, bouts of hypoglycemia, inconveniently frequent urination,  hospitalization for hypovolemia, and surgery to repair my lower bowels, I had several gout attacks.  It was the final straw.  I decided I could not be the most unfortunate person on the planet with several seemingly rare and 'idiopathic' disorders.  After quite a bit of reading I found myself drinking a bottle of apple juice with great trepidation in an ill-advised self-administered fructose challenge test.  The results left me quite ill for a week but grinning ear to ear.  It is over 9 months later now and with complete dietary exclusion of fructose I feel like I'm living life on 'easy mode'.  I'm still waiting on genetic results, which my insurance wouldn't pay for, but I have had my full genome sequenced at my own expense.

The one exception to my new-found health is that my polyuria did not go away. A nephrologist has confirmed that there is tubule damage.  My kidneys leak various things, and they drag a lot of water with them.  Do any of you still have this problem?  I pee some 4 liters a day even with a careful diet.  My sodium and potassium are low.  The only treatment so far is desmopressin and electrolyte replacement.  I would love to hear from the rest of you about whether this condition improved over time or persisted at all.  If anyone has received other treatment options I'm all ears.

Very happy to read your stories and not feel so alone with this.  In particular I had some terribly judgmental doctors which I now see is not uncommon.

[charlie]

Hi Winston, good to meet you. My daughter doesn't have HFI, but Fructose Malabsorption (still slightly debatable) and sucrase-isomaltase deficiency so can't have sucrose or starch too. Also better on Lactofree milk. She has alot of urinary problems and age 12 is still incontinent most nights, although when we get the diet really right we are now hitting some dry nights. If she eats alot of the wrong foods she will still flood in the day too. I think for her it is the body trying to flush itself out because she certainly doesn't overdrink.

We started out thinking it was HFI, hence being here, but here gene tests and liver tests said no, so we carried on looking for answers and by a process of elimination got where we are.

Hope you find some answers, and yes, you are not alone.

Charlie

[colormist]

Hi Winston!

I had to look up Polyuria! Do you drink 4 liters a day? I tend to only urinate as much as I drink. I'm not sure if that's abnormal or normal. Sometimes I drink more, sometimes less. I don't think I've ever had a production of 4 liters. I have a higher need for water and higher production on days where I've ingested a small amount of fructose. I can always tell how much fructose I've ingested by the color of my urine. Every time I've gone into the doctor, they tell me I'm dehydrated (due to the color of my urine) and I seriously doubt their medical knowledge, but I never feel like arguing with them. I do find myself getting up in the middle of the night sometimes to go to the bathroom--particularly if I've drank a glass of water or two a few hours before bedtime.

Can I ask how old you are? I've noticed that my kidneys hurt quite a bit when they're flushing out fructose. I wonder if the level & duration of trauma your kidneys have been going through due to ingesting fructose might have caused polyuria. Of course, it could always be an unrelated issue.

[winston]

I'm in my mid 30s. HFI causes inflammation of the proximal tubules (a component of the kidney) which causes you to flush out all sorts of things that you're supposed to keep in. This can change the color and PH of your urine. With a lot of fructose you would experience acidosis, which is some of what makes you feel so ill.

I do indeed drink 4+ liters a day without medication. The issue is that I pee enough to become hypovolemic (like dehydrated, but low sodium). If I don't drink enough my heart rate becomes rapid and weak. My kidneys literally don't hold enough blood in on their own. After the advice of a well-meaning endocrinologist I voluntarily restricted my fluids to 2L a day for several days and ended up hospitalized in a mild state of shock.

There are several indications in your labs that will tell you if you're truly dehydrated. The levels of sodium in your blood and the BUN:creatinine ratio are reasonable indicators, depending on your kidney health. I don't think color is more than a rough guide.

[sapphire]

Hello Winston,

I am a new comer to the group...how exciting.
I am 49 years old and i am one of the babies from Switzerland they talk about in the research papers. My brother is the second child.

I can very much relate to the polyuria, hence the hypokalemia. The hypokalemia has caused heart palpitations and feeling not well. Caridac wise all was good, thankfully, but the serum K+ was moderately low. I was discharged with the instructions of "eat more bananas to bring up the K+".
Finally I had convinced my family MD to put me on K+ pills which i tritrate myself, depending on how much I have diuresed that day. It doesn't help that I LOVE my 2-3 cups of good coffee.

Since the K+ PO replacement, I rarely feel ill and do have biyearly blood works just to monitor everything. What you have shared really makes me question why the polyuria... I will be seeing a medical internist who will look at the whole picture. He is not familiar with HFI but I hope he does his research prior to the appointment. I wonder if I have adrenal fatieque due to ongoing physical stress on the body. I sometimes also crave salt...

I do have a question, Dr. Tolan seems to be the leading researcher for the HFI. Has anyone been able to reach him?
I wonder if there are any longitudal studies going on following HFI suffers over their life span to identify health issues that arise.

Cheers!
Angela

[colormist]

Hi Angela,
I contacted Dr. Tolan once about his website and let him know about the HFI stories I post on my blog. He responded within a week and was excited about the stories, so he has been known to respond if you contact him through his website.

[christopher]

Hi Winston. I also believe that I have some sort of kidney damage. A few years ago in an attempt to become fit and healthy I started exercising and adjusted my diet to include more fruits, and I also started sweetening my oatmeal with fructose instead of normal sugar. After a time of doing this I got weird symptoms and I started trying lots of different things. For example I really stank of ammonia as soon as I started sweating when working out, ridges appeared along my nails (hands and feet), fatigue and depression set it, my heart rate during all forms of exercise went up by a lot and I could not exercise as hard, and more. In an attempt to "cure" this I started trying out the Ph-diet and supplementing with bicarbonate (I now believe this diet to be bogus) but I got colicky pains in my flanks from doing this, as well as pain radiating down into my groing - I now believe this to be passing of uric acid kidney stones which later dissolved in the alkaline urine (due to ph-diet - uric acid stones will dissolve in high Ph). While checking the pH of my urine during this time I once noticed I had peed out what looked like part of a small vein or something like it - like a tube. So yes - I believe I might have some kidney damage.

Have you read about using the ketogenic diet to reverse kidney damage? There is not a lot of medical literature on it, but it is very exciting.