Many people with sore toes, feet, or other joints find it difficult to get a clear diagnosis.

Over the years, the gout symptoms forum has seen many people who are totally frustrated.

I am not talking about people who refrain from visiting their doctor, who talk with their mates in the pub, and decide that a swollen foot must be gout. I’m referring to people who have consulted doctors, presented suspicions of gout, yet been told they can’t have gout, for whatever reason.

In my case, I was originally told by my family doctor (since retired) that I could not have gout, as swelling was in my ankle, not my big toe. Joint fluid analysis by a rheumatologist confirmed that I did have gout. It’s a shame I had to endure 4 days in hospital to get that simple test, but at least I knew exactly what my problem was.

I will summarize other old forum discussions about this issue, but I want to start this new discussion now, as another contributor has the same problem.

If you have had trouble getting a gout diagnosis, please share your experiences here. It may help if you read about gout symptoms first.

8 Comments

  • Rakhal

    It has been 8 years and many doctors and I’m still not sure I have gout. The first 2 times both feet swelled up after long hikes, the swelling was on the top of my feet at the base of my toes. It was very difficult to walk until the swelling finally went down in about a week. The swelling was not hot or red. These instances were about 4 years apart. About 2 years later my foot swelled at the base of my left toe and turned red and my toe curved inward, the pain started after a long hike. After about a month I saw a foot doctor and was diagnosed with a bunion and given NSAID’s and a boot. It went away in a couple weeks. I was fitted with custom orthotics and my feet never got used to them, eventually they both swelled up on the top of my foot around the base of my toes. A blood test showed high uric acid and further research showed I’ve always tested high for uric acid, between 9 and 11. Because the symptoms were not textbook, i.e. not red and hot, and he could move the toes around without much pain, he hesitated to diagnose gout and sent me to a reumatologist. He tested me for many things such as reumatoid arthritis and I came back negative, he said he couldn’t aspirate the fluid because it wasn’t that swollen and wasn’t an easy joint like the big toe, he said he doubted it was gout. I’ve been to 2 more foot doctors and 1 general physician since then and gone through 2 more pairs of orthotics and no one has been sure of a diagnosis. My orthotics again result in my feet swelling up, one time so painful that I couldn’t stand the quilt of my bed resting on it, which made me think of gout. My “attacks” now seem to start in the top of one foot (again not hot or red), usually but not always after walking a lot, and move to the ankle, then some times move to the other foot and ankle. It’s not so painful I can’t walk but pretty close. It hurts the most if I sqeeze my foot together or rotate my ankle. The pain usually lasts 3 weeks to a month. Lately my knuckles and knees also seem a bit sore but I don’t know if it’s in my head or I’m just getting older or it’s gout. I am 41 and 6’3″ and 20 pounds overweight, and I drink a lot of wine and eat a lot of rich foods. That and the high uric acid would suggest gout but I never have the textbook symptoms of, fast onset at night, big swollen red and hot joints…etc. Also all my x-rays have never shown any signs of damage from gout. I dont want to just start taking a life long medicine because it might help. Does this sound like gout? Can some one help me where so many doctors have failed?

    • James F.

      Your situation is just like mine. I have been misdiagnosed for over 10 years. Doctors just will not listen. I finally have a doctor at Kaiser who will put me on Allopurinol But it wasn’t easy to convince him. He wanted it be everything but that. Gout is really a very aggravating condition that takes away quality of life. If you we can get rid of those crystals swelling our joints and muscle tissue especially in the feet then it would be enjoyable to walk again. Good luck!

      • Too true James.

        A great deal of the problem lies with the way uric acid test results are reported. Because the labs use statistics to record a “norrmal” range, this statistical norm gets confused with a medically acceptable level.

        I would expect qualified health professionals to have more commonsense, but we all know that commonsense is rarely common.

        The answer is simple, and as gout patients we have to insist.

        If uric acid is above six, and we have any joint pain, then we must lower uric acid to 5mg/dL or below. Uric acid blood tests should be accompanied by liver function and kidney function tests when on uric acid lowering meds.

        Gout treatment in 2 sentences.

        Of course, we are really discussing diagnosis here, but those 2 sentences also work as a diagnostic tool where there is doubt. Allopurinol is cheap and safe. If the pain goes away in six months, then you confirmed the diagnosis of gout by fixing it.

  • hansinnm

    Rakhal,

    You may not like what I am going to tell you, but that’s up to you: “Can someone help me where so many doctors have failed?” You asked for it!

    No one can/will help you. Only YOU can do that. Forget the greedy doctor who is just in it for a fast buck. The time has passed where a DOCTOR used his brains, knowledge, experience, and compassion to help and heal other human beings, particularly in this country, if you live in these United States of America. Today’s doctors get their instructions from “doctor-teachers” who get their info from the pharma industry how and what pills to prescribe and to perform as many tests as insurance companies, including Medicare, will pay for. (I better get down from my Sunday soap box.)

    Rakhal, you are way ahead of many gouties who have come to this forum. You know your uric acid level. It is 2-3 times too high for comfort. If you want to get to my age and still be doing things younger people have a hard time doing, get that level down to 4-5. Your over-weight, your booze, and rich food is not helping you situation, however, forget working on those to reduce you UA level.

    Here is what you need to do: Get a rheumatologist who will WORK WITH you not against you. Get a prescription for Allopurinol of 100mg strength and take that for 2-3 weeks to find out if you are allergic to it or not. The majority of people are not. (If you are, you have Uloric to choose from, but that is $5 a pill and it may kill you before gout does, but to my knowledge, gout has not killed anybody, yet.) Then increase the amount to 300 mg for 4-8 weeks and get a UA test to see where your level is. Hopefully it has come down. If it has dropped by 2-3 points keep going with 300 mg, if not, double the Allo to 600mg and get another test after 2-3 months. (Some people, like Keith has gone as high as 900mg to get the UA in the right range.)

    Both, Allo and Uloric, are medications which reduce production of uric acid, thus lowering the level. Another type of medication, Probenecid, causes the body to get rid of excess uric acid, however, there are chances of getting kidney stones, if taken too long. Allo has been around for more than 40 years and Uloric about 4years, now. But neither have serious side effects, except Allo for allergy.

    Now, why do you want to get that UA level down to 4-5 mg???
    They hurt They hurt
    1. TO PREVENT GOUT ATTACKS. They hurt !!! [Colchicine (2x.6mg) a day for 6-10 days for reduction of inflammation, and Naproxen/Aleve (2x500mg) a day for about 3-4 days for extreme pain]
    2. TO PREVENT THE FORMATION OF TOPHI. They hurt even more and deform your feet, hands, and other parts of your body.

    That’s it!!! I could write a book for you, but I have more important things to do, that is: Doing NOTHING, and therefore I don’t have the time to write that book. But as the saying goes: One can lead the donkey to the trough, but one cannot make him drink. Now, I led you to the trough, it’s up to you to do the drinking, meaning: Get that UA level down to 4-5mg/dL.

    One more reminder: When you get your blood tests taken, make sure that it is a “Complete Metabolic Panel” test. It shows if any liver and/or kidney problems have entered the picture. (Your rheumatologist aught to know that!)

  • hansinnm

    Rakhal,
    You may not like what I am going to tell you, but that’s up to you: “Can someone help me where so many doctors have failed?” You asked for it!

    No one can/will help you. Only YOU can do that. Forget the greedy doctor who is just in it for a fast buck. The time has passed where a DOCTOR used his brains, knowledge, experience, and compassion to help and heal other human beings, particularly in this country, if you live in these United States of America. Today’s doctors get their instructions from “doctor-teachers” who get their info from the pharma industry how and what pills to prescribe and to perform as many tests as insurance companies, including Medicare, will pay for. (I better get down from my Sunday soap box.)

    Rakhal, you are way ahead of many gouties who have come to this forum. You know your uric acid level. It is 2-3 times too high for comfort. If you want to get to my age and still be doing things younger people have a hard time doing, get that level down to 4-5. Your over-weight, your booze, and rich food is not helping you situation, however, forget working on those to reduce you UA level.

    Here is what you need to do: Get a rheumatologist who will WORK WITH you not against you. Get a prescription for Allopurinol of 100mg strength and take that for 2-3 weeks to find out if you are allergic to it or not. The majority of people are not. (If you are, you have Uloric to choose from, but that is $5 a pill and it may kill you before gout does, but to my knowledge, gout has not killed anybody, yet.) Then increase the amount to 300 mg for 4-8 weeks and get a UA test to see where your level is. Hopefully it has come down. If it has dropped by 2-3 points keep going with 300 mg, if not, double the Allo to 600mg and get another test after 2-3 months. (Some people, like Keith has gone as high as 900mg to get the UA in the right range.)

    Both, Allo and Uloric, are medications which reduce production of uric acid, thus lowering the level. Another type of medication, Probenecid, causes the body to get rid of excess uric acid, however, there are chances of getting kidney stones, if taken too long. Allo has been around for more than 40 years and Uloric about 4years, now. But neither have serious side effects, except Allo for allergy.

    Now, why do you want to get that UA level down to 4-5 mg???

    1. To prevent gout attacks. THEY HURT!!! [Colchicine (2x.6mg) a day for 6-10 days for reduction of inflammation, and Naproxen/Aleve (2x500mg) a day for about 3-4 days for extreme pain]
    2. TO PREVENT THE FORMATION OF tophi. They hurt even more and deform your feet, hands, and other parts of your body.

    That’s it!!! I could write a book for you, but I have more important things to do, that is: Doing NOTHING, and therefore I don’t have the time to write that book. But as the saying goes: One can lead the donkey to the trough, but one cannot make him drink. Now, I led you to the trough, it’s up to you to do the drinking, meaning: Get that UA level down to 4-5mg/dL.

    One more reminder: When you get your blood tests taken, make sure that it is a “Complete Metabolic Panel” test. It shows if any liver and/or kidney problems have entered the picture. (Your rheumatologist aught to know that!)

    • I have kept this discussion going, as it was an early classic example of how not to use the gout forum to ask about getting a gout diagnosis. First there is not enough information, so the old discussion was a constant stream of supposition. Mainly, it is your doctor’s job to diagnose gout – it cannot be done remotely. Indeed, it is dangerous to have a whole foot swollen like a balloon. It needs immediate attention from your doctor or a visit to ER.

      As we have discussed many times, swollen feet are a gout symptom, but it could easily be something else. This forum is a good place for discussing what your doctor has told you if you didn’t understand him. It is a bad place to seek a clarification of symptoms.

      One part of the discussion that did give positive value was the description, from a different contributor, that his gouty joint was shiny. Shiny seemed to be a new descriptor to many viewers, but once you see it, you realize how true it is.

      If your swollen foot is red and shiny, it could be gout – but it could be something else, so get it checked by a physician not a forum.

  • contragout

    For cases where the symptoms are atypical, and ‘the doctors aren’t sure what it is:
    There’s a suggestion in this thread, to ‘just begin taking allopurinol’ — be careful here, because if you do have gout, that drug can precipitate an acute attack.

    In my case, this is close what I did — but instead, with half a tablet (50mg). With hindsight, I probably should have broken that half-tablet once again, to bring it down even more (25mg). One can always take more, but after having swallowed the tablet, you can’t ‘get it back’ … 😉

    So far as I know, the only condition that will ‘flare’ after taking allopurinol is — gout. And barring allergy, from 25mg, side-effects would be almost impossible. You should have analgesic tablets and a cold pack close at hand, and even then, be prepared for several hours of discomfort.

    Within twenty minutes, I was certain I had gout — without an aspiration biopsy. And yes, my serum uric acid levels were never in the ‘gout risk’ range.

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