October 29, 2018 at 1:21 pm #8671
I was afraid this day would come…I would like to use this thread to be a log of my experience treating my gout.
My father had terrible gout attacks for decades while I was growing up. As a boy and as a young man I watched him howl in pain during his worst attacks. Sometimes he would stay in his recliner for days at a time, wretched and irritable because of the attack. I know attacks were not rare for him because I have so many memories of them over the years. Now the first gout attack of my life has happened to me at age 27. Eight days ago I woke up in the middle of the night because my right big toe felt like it was on fire or being stabbed, it was excruciating pain. But as I lie awake that night, more poignant was the creeping fear that I had just been given confirmation I am in for the same life sentence; my father’s genetic vulnerability to gout appears to be mine as well. A walk-in clinic confirmed that it was a gout attack. My uric acid level was 581 umol/L, or 6.57 mg/dL.
But I don’t plan to take this lying down (or rather lying down as little as possible). At my age I can’t fart around with this, I have to figure out how to keep my uric acid levels under control for the rest of my life or I will risk permanent joint damage and progressively worse attacks.
I have been doing a tonne of research this last week, which is how I found this forum. I see there is healthy debate over allopurinol and other more alternative therapies such as diet controls of various kinds, Vitamin C supplements, intravenous iron reduction, and taking over the counter supplements which have some evidence of XOI-resembling action like copper and zinc compounds. If I can, I would prefer to avoid a lifetime on allopurinol.
I also want to be scientific about this, I don’t want to make 8 changes to my diet and habits and then not know which thing worked and which thing didn’t.
I am seeing my regular physician this afternoon to talk about my uric acid levels in a blood test performed 5 days ago. Will update later today.
November 1, 2018 at 3:22 pm #8677
November 2, 2018 at 5:14 pm #8679
You are right! I was using a creatinine unit converter instead of one for uric acid. I noticed lots of studies used mg/dL but my lab result was in μmol/L, so I did a quick conversion on a web-based calculator somewhere.
Now that I think about it I guess a mole of uric acid does not weigh the same as a mole of creatinine, which would make the numbers wrong because a heavier molecule means there is more mg in a mole…flashback to high school chemistry. Thank you for pointing out my mistake because I’m not sure I would have noticed it otherwise.
My uric acid level was 581 μmol/L or 9.77 mg/dL.
Since my last post I have burned my way through 3 GP’s, each of whom were surprisingly dismissive and told me to drink more water and avoid red meat, shellfish and a few other high-purine foods before sending me on my way.
The only problem with that advice is I already barely ever eat red meat or shellfish and I drink about 6L of water a day. And, one doctor told me to avoid meat altogether while another doctor told me to avoid lentils and beans! How am I supposed to eat enough protein in a day if I’m supposed to avoid all meat and lentils and beans??? I can’t only eat cheese!
I also wasn’t satisfied with those answers because my research seemed to suggest that diet plays a more limited role than these doctors implied. I also wasn’t satisfied because my toe joint hurts most of the time now, just a low-grade pain and small amount of inflammation ever since the attack 9 days ago. I need a GP who is willing to investigate and monitor this with me and help me find better solutions.
Yesterday I met with a doctor who was very critical of the tests the previous doctors had ordered as not being investigative enough. He ordered foot x rays to rule out joint damage and several blood tests to rule out other kinds of arthritis that are not gout. I also persuaded him to test my uric acid again as well as my ferritin levels because of the research I have read about the relationship between iron and uric acid/gout. He wasn’t sold on the idea but was willing to investigate it.
I didn’t realize that finding a good family doctor who had good knowledge about gout would present such a challenge. But now I feel like I’m making progress again.
November 3, 2018 at 8:25 am #8680
nobodyParticipantŦallars: Ŧ 505.72
I’m in a bit of a hurry but here’s the best I can do right now:
-the red meat thing is in all likelyhood nonsense (other types of meat are no better) and many legumes are fine
-if you wanted to avoid all meat and legumes anyway, you could get the proteins lacking in most other plants from eggs and dairy (not just cheese)
-your uric acid test result is too high for dietary tweaks to have a real chance of working anyway (but see whether a second test confirms the first result or not)… sorry but you’ll most likely be needing a daily XOI pill if you have gout!
-even if you were to find another way somewhere down the road, if you have gout it’d be best if you took a XOI for at least a couple of years… and the less you delay, the better!
-it’s a good idea to test for other diseases first but chances are you have gout
November 5, 2018 at 4:04 am #8689
Thanks for the input. I tend to agree with your points that red meat, and diet generally, is not the solution to my problem (at least not sufficient on its own). Also, some of my gout education this past week has come from your other comments on the forum, so thank you for those.
Notwithstanding that my doctor has not yet ruled out other conditions, I do see that XOIs are the smart choice here. I remember Keith writing somewhere that one can approach long-term medication with trepidation a lot like a child being unhappy about the prospect of wearing glasses for the rest of their life. I admit some of that anxiety applies to me.
Your suggestion of committing to XOI treatment for a couple years, and not necessarily forever, to clear up uric acid crystals is a valid one, which I had not yet considered. It’s something I may very well discuss with my doctor if and when I get a positive diagnosis. 🙂
November 5, 2018 at 4:33 pm #8691
nobodyParticipantŦallars: Ŧ 505.72
To clarify: you’d need to find an alternative way to lower your uric acid if you were to sucessfully quit your XOI after a few years. Some people have borderline uric acid and could perhaps simply take a long break from XOI therapy without harming themselves but your uric acid is high enough that you’d only be safe if you found an effective alternative (close monitoring of your uric acid would tell if the alternative actually works in your case).
November 5, 2018 at 5:40 pm #8693
Not to worry I did understand that from your original comment. Quitting XOI’s without finding a successful alternative to reduce uric acid levels would only cause gout to reoccur in the future.
You should log in to GoutPal to reply to this topic.
If you need more information, get it from GoutPal’s Log-in Help.