Has anyone been wrong about their gout?

Stopping Gout Together Forums Help My Gout! The Gout Forum Has anyone been wrong about their gout?

This topic contains 16 replies, has 4 voices, and was last updated by  Keith Taylor 1 year, 11 months ago.

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  • #2003

    Lowell Andrew F.
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    Well, I had my rheumatoid apt today finally, and was told to clear all notions that I have gout.

    Please see my past notes under my name (or A-Lo) and you will see that it seemed pretty clear that I had at least a “pre-gout” but the doc insists it does not exist and must be a B12 (or other) deficiency. I have to trust him as he’s the doc, but based on what others have written here and what my friend went through, I do have to wonder if there is a pre-stage that doctors will not recognize or care about because it is not a dangerous situation (YET). In any case, I got healthy this summer! Thanks for all the help to Keith et al., you guys have been great and I will post here if I get a definitive answer on this condition. I WISH it were gout as I would know I treated it correctly, but after 8 weeks of allopurinol and lowering uric acid from 6.4 to 4.4, I feel the same. The pain is in my fingertips and tips of my toes only, and my extremities fall asleep a lot and have major numbness. I’m sure there will be naysayers and I can see this being either case and will continue to be very careful with diet in case there’s a chance of gout. Best wishes and hope I didn’t waste anyone’s time, but maybe someone else will be in this same predicament and it may help them to read my journaling and (moreso) the replies from the community.

  • #2009

    Patrick
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    Good Luck to Andrew. I just have a question. Are you still taking Allopurinol or did your doctor only prescribe you a 2 month (8 week) supply?

    I ask because whatever MG’s you were taking (100 MG, 200, 300 etc.) obviously seemed to work for you and I’d be concerned for you if you stopped taking the medication now. 8 weeks is a very short time frame to undo what could have been several years worth of Uric Acid crystal build up.

    If your doctor doesn’t think you have Gout, then why did he/she prescribe you a medication that has been proven to reduce Uric Acid…..the cause of Gout in the first place? That doesn’t even make sense. That’s like a doctor prescribing Lipitor to a patient to reduce Cholesterol, but telling the patient she doesn’t have to worry about plaque build up in your coronary arteries or future heart issues.

    Very head scratching, and these are questions you should be asking your Rhuemotologist very pointedly. Good luck and try and stay pain free.

  • #2014

    Keith Taylor
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    I agree with you 100% Patrick.

    Andrew has displayed all the classic signs of gout attacks during uric acid lowering. As uric acid has been 7.1 in the past, that is a guaranteed buildup of uric acid crystals. We have absolutely no idea how long that burden has been accumulating. But, I never assume it is under control until the gout patient has gone six months with both of the following:

    1. Uric acid consistently below 5mg/dL.
    2. No gout pain symptoms.

    How doctors can get it so wrong confounds me. But, I’ve been doing this long enough now to know that they frequently get gout management totally wrong.

    I hope Andrew can answer one question:

    What is the name and address of the so-called rheumatologist you have just consulted? I want to warn other gout sufferers to stay well away.

  • #2018

    Lowell Andrew F.
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    Guys, thanks – @ Patrick, it’s 2 different docs (actually 3). My primary diagnosed gout at uric acid level 6.4 based on that and my symptoms of pain (7.1 was last year and no probs). My best friend who’s a doc then said that was ridiculous as I don’t have the right symptoms, and then the rheum doc said there is no such thing as pre-gout. I figure there is, because there is always a point at which you are close to having gout but don’t know it.
    My uric acid is at 4.4 on the latest tests (last week) but I still have significant pain in fingertips/toes, but it moves around to all of them, it does not stay in one place like it should.
    The B12 test should be out today. I have to wait a month for my EMG (nerve test on fingers) to know more. Sorry to add to any confusion!

  • #2019

    Patrick
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    Then the question I’d ask my doctor friend is “What is it EXACTLY that is the proper Gout symptoms, since I have a Uric Acid above 7, and the joints in my fingers and toes hurt?” And why then was I prescribed a drug that SPECIFICALLY targets the main cause of Gout, Uric Acid?

    These should be very basic and simple questions any doctor worth his salt should be able to answer, even if the guy is your friend.

    As Keith and others have pointed out very often, Uric Acid has very harmful long term affects on the joints and elsewhere. I’d like to know if that’s his response, otherwise there is absolutely no reason to prescribe you a Uric Acid reducing drug.

    Whatever the reason, keep that Uric Acid as low as possible and if you are not taking Allopurinol or Uloric, good luck.

  • #2031

    Keith Taylor
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    Andrew, you’ve got better percentages than me! You’ve got one third (33%) doctors who understand gout. I’ve only manage one in five (20%)! ❗

    Actually, you are probably nearer two thirds. Your rheumy said there is no such thing as “pre-gout”. He has some gout knowledge, but he needs a good thesaurus. What you describe as “pre-gout” is known in the medical profession as “inter-critical gout”. Patrick just reminded us how dangerous inter-critical gout is. Even when you have no obvious gout symptoms, uric acid crystals are dangerous.

    Why not invite your doctors here? I can congratulate your primary doc. I can show your best friend my gout symptoms survey that proves gout is more than a swollen big toe. I can help your rheumy create a gout thesaurus linking medical gout terms with common layman gout terms.

    I don’t really like all this doctor baiting. I’m here to help you, Andrew. Not try prove medical points. You have a uric acid problem that should be easily controlled. If allopurinol isn’t right for you, there are other uric acid lowering meds. If pharmaceuticals don’t suit you, there are herbal and lifestyle options.

    You might have noticed that I tagged this topic “Gout Victims Group” earlier. That’s because I thought you’d given up on trying to control uric acid. I hope I’m wrong.

    Let me know how I can help you move forward, and control your gout in a way that makes you happy.

  • #2032

    Keith Taylor
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    Andrew, I just noticed “significant pain in fingertips/toes, but it moves around to all of them, it does not stay in one place like it should.”

    When you are lowering uric acid, symptoms often move around in the way you describe. It is common to experience gout pain in joints that you have not previously noticed. It is common for multiple joints to be affected where previous gout attacks only affected one or two joints.

    Why is this?

    If you remember earlier (your Triggers topic, I think), I described how lowering uric acid can trigger gout attacks. The burden of uric acid crystals is spread unevenly throughout your body. Different rates of crystals dissolving produce different effects. Sometimes, crystals just produce mild feverishness or itching. Other times, it’s more acute. This is essentially random, because it’s from crystals that formed many months and years ago.

    Like renovating an old house. Ceilings drop on your head in rooms where you never had problems before. Wear a hard hat for six months (or longer) until all that dangerous old drywall has gone. (apologies if I got the wrong American term for what we call plasterboard).

  • #2034

    Lowell Andrew F.
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    I’m still here! 😉
    I hope you are right Keith, and I trust you are, so I am continuing a good gout diet. But I’m a bit shy of the meds right now with the scope of the rash I’m still dealing with..I wish they’d given me a med for THAT right now.
    Anyway, it’s called sheetrock, and you’re correct! So I will continue to be careful. The nice thing is, though I can feel the “leaks” happening when I eat poorly now, I think – not totally sure but we had one more portion of crab in the freezer, my wife ate most but I had a little, and 2 days later (seems to be my timing on this) I felt some more pain. So, I’m definitely back on the right diet, but I’m not sure about meds yet. I wasn’t careful at *all* before now so I feel like I should be able to control it.
    As I may have said before, I hope to God this is gout because the alternatives sound worse (R.A., neuropathy) both which may cause lifelong pain and without solutions like proper eating. I do have a brother and an uncle with R.A. so part of me still thinks that remains a possibility, as the glycemic index affects how you feel with that disease as well.

  • #2038

    Keith Taylor
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    Sheetrock! I had it lurking at the back of my mind. It’s been too long since I watched Ty and the gang on EM:HE. Bad analogy anyway.

    My summary is this: You’ve had a bad experience with allopurinol. It’s right to stop allopurinol if a rash shows. There are alternatives. If you don’t want other medicines, then diet might be right for you.

    But, you must continue with monthly uric acid monitoring.

    Obviously, I’m taking a remote view of your situation. But, the most likely explanation is your recent pains are a result of old uric acid crystals dissolving. It’s vital to continue that process to save further damage to your body, and continue your recovery process. That means keeping uric acid below 5.

    I’m intrigued to know more about your gout diet. Let’s hope your advisers on that are better than your doctors.

  • #2044

    Lowell Andrew F.
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    Thanks Keith! I’m basically following your diet guidelines and have read a lot here, plenty of veggies in variety, lots of fruit & nuts as well – everything pretty much fresh, no sugar, lots of low fat dairy and never HFCS (or even just CS). I’m looking at it as if it were the paleo diet, in general, and I like those food types. Fortunately this summer was a great time to do that while prices went down, it may get harder in the winter. My uric acid was last at 4.4 and I feel good this week so far! The longer I’m at work the more it seems to hurt (Friday’s are always worst) So I blame my work for gout 😉 haha.
    I also just picked up some supplement pills from amazon but looked for what to get here and didn’t see it. Is there a page I’m missing that details the best supplements? It’d be cool if we could click a link here to order and they gave you some kickbacks for the sales. Also thinking of getting home uric acid test kits. Thanks as always!

    • #2046

      Patrick
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      Andrew,

      The most probable reason you don’t see a page for supplements on this site (feel free to correct me Keith) is because there really is no HARD evidence to conclude supplements such as Cherry Pills, Cherry Juice, or the like have anything more than a plecbo effect on Gout sufferers. Yes, they have redeeming benefits for one’s health, but to say they have a specific effect on Uric Acid (what is the real problem) or Gout in general hasn’t been proven beyond a reasonable doubt.

      I fell into the “Cherry Juice/Cherry Pills” remedy also. I still drink/take them. What can it hurt, right? But when I first started this journey, they did abslutely NOTHING to remedy what the real problem was…..Uric Acid reduction. Until that is taken care of, you can drink 100 gallons of cherry Juice and all you may have in return is pleasant smelling urine.

      Some claim analgesic effects from some supplements, but I’m not sure of all the ones you are talking about. Water and proper hydration are your better solutions, but I’m not a doctor, and NO I don’t play one on TV either.

  • #2048

    Jean Clyne
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    Re cherry extract, when I first started taking it, got very uncomfortable pain, pins and needles, tingling in random finger joints, feet and knees within a short time of taking it, so assume that showed it working to help clear uric acid out of joints. This only happened for a short period of time in the beginning, but
    I still take it 8 months in. By the way, my uric acid tests , twice show normal levels below 5 mg/ dl. Total vegetarian diet and very little sugar have eliminated symptoms, as well as 1 celebrex anti inflammatory every 3 days.

  • #2062

    Keith Taylor
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    Andrew: “It’d be cool if we could click a link here to order and they gave you some kickbacks for the sales”

    Thanks for that. I’ve been going through a phase where I’ve concentrated on providing better information, rather than chasing the dollar. It won’t last! I still need to get Gout Diaries, and Structured Help going. And, I have to conclude what to do about GoutPal and Social Networks with Carolyn. I do have lots of links to Amazon.com (and amazon.co.uk and amazon.ca) and eBay and Walmart, etc. But, like lots of other things, the only way to find them is using the Search Box (top right). I will organize these better next year. In fact, I’ll have to. I’m funding my 2017 USA trip out of pension. 2018 and beyond depends on me getting my finger out, and returning my commission income to the heady days of 2011.

    Patrick: “The most probable reason you don’t see a page for supplements on this site (feel free to correct me Keith) is because there really is no HARD evidence to conclude supplements such as Cherry Pills, Cherry Juice, or the like have anything more than a placebo effect on Gout sufferers”

    Not a correction, Patrick. More of an explanation. There are good and bad gout resources. As per my reply to Andrew, I’m going to organize info on gout resources better. There are also doubtful resources. I can argue a good case for placebos, even though I’m not personally convinced. Ultimately, if a gout resource does no harm, I will not ban it from GoutPal. I might explain why I think it’s pointless for me (like home uric acid meters). But, if somebody is going to buy it, I’m grateful for any commission I can get. To summarize:

    • Bad resources should not appear on GoutPal (tell me if they slip through).
    • I will encourage good resources where they fit the right individual.
    • I’ll take the cash where I can get it, if it’s non-exploitative. That’s my way of funding this service. It might not be perfect, but I prefer it to marketing false hope.

    Jean: I’m not quoting anything, just apologizing to you. I’ve neglected responding to your posts. Thank you for your patience, and for your continuing support. I’ve put your other posts on my action list. I’ll respond soon.

  • #2081

    Lowell Andrew F.
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    Update:
    I’ve shown positive for RA in the 14-3-3 eta protein test (which I believe everyone suspecting RA should do if they haven’t, as the RF test gives false negatives) . This makes the gout possibility even tougher as it could be both. Who knows. I’ll keep seeing more docs I guess, until we figure it out. The difference they keep saying is gout doesn’t move around as much, but you guys all say it sure does! And mine definitely is. Right now all of my fingertips hurt and last night it was my feet – toes, arches etc. I’ve been off the gout meds and went from uric acid 4 – 6 in about 2 weeks, even on a strict diet…
    PS Starting on uloric as a preventative today, as allopurinol failed me. I guess once you get the uric acid level down for a while, then if there’s still pain moving around it’s RA?

  • #2083

    Keith Taylor
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    Uric Acid Diet
    I find ‘careful’ is usually better than ‘strict’ when it comes to uric acid diet. Start with EFSEP (Eat Food. Sufficient. Especially Plants), then tweak. From your post #2044, you seem to tick the ‘Eat Food’ box. That means, you appear to eat real food, and avoid processed food-like substances. I’m with you on that. Just today, I vowed to stop buying any foods that contain ingredients I wouldn’t eat by themselves. Despite my urging people to ‘read the label’ I’ve been getting lazy. I thought I was good switching from an animal burger to a plant burger. Until I read the label, and saw: “Calcium carbonate, added iron, niacin, thiamin, annatto coloring, glucose-fructose syrup, modified maize starch, diphosphates, sodium carbonates”. 😮 I’ll be making my own veggie burgers, in future.

    As for the other 3 boxes:
    *- Sufficient – My bathroom scales tell me, I’m failing that, but improving. I’m now trying to cut down on too much bread & pasta.

    *- Especially Plants – For me, that’s fish about 5 days a week, and meat about once a week. Or, at least that’s my target! 😉

    *- Tweak – This is well overdue for me. I’ve been trying to focus on EFSEP. But now is my time to look more closely at specific food improvements. I haven’t made my gazpacho soup for gout in a long time. I think I need to create a winter version of that, now. Also, I’m thinking about researching quercetin. So, look out for a red onion soup recipe.

    You’ve got me thinking there, Andrew. 2 soups is too strict! I’m going to aim for a different plant-based soup for each day of the month. I just need to find a better way to enjoy soup. That is, without 2 slices of thickly buttered bread!

    Rheumatoid Arthritis (RA)
    It’s a shame about the RA, Andrew. I think lots of gout sufferers also get rheumatoid arthritis. I don’t think there’s a causal connection. There are likely management connections regarding anti-inflammatory pain relief, and low-inflammation diet. But, on balance, I’d say it’s best to get uric acid under control, then that part of the inflammation problem is solved (in at least six months).

    Moving Gout
    Anyone who thinks gout doesn’t move around is ignorant. Best to send them here for some training and enlightenment.

  • #2095

    Lowell Andrew F.
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    Keith will either love or hate me for this post 😉
    I’ve discovered aside from having a genetic disposal to RA, there is a possibility that lead exposure brought my pain out and I may have what is called “saturnine gout”. Anyone heard of it? I’ll go search but wanted to put it here for others – there are studies that show elevated levels of lead (not even close to the top of “normal range” indicated on bloodwork) can trigger gout! Hopefully more soon on this. Another rheum doc to see Friday…

  • #2107

    Keith Taylor
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    I love it, Andrew! 😀

    I’ve heard of saturnine gout. But, I thought it was part of history, given that lead plumbing has virtually died out.

    There are lots of environmental toxins that can cause secondary gout. I tend to lump them all together, but it might be better if I investigate specific toxins more (?)

    The answer, as with all secondary gout causes, is to get rid of the root cause if you can. But, this often takes a long time. So, it’s usually best to take something to lower uric acid, until the root cause can be stopped. Or, in case it can’t be stopped.

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