Keith’s GoutPal Story 2020 Forums Please Help My Gout! Gout Symptoms Damn do I have gout? Will see doc need some input please :-(

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  • #4662

    CC_Alaska said:

    Well…there's another way to diagnose it: Tuff it out this time and if it's Gout; IT WILL RETURN….probably about a year or so from now when you have completely forgotten about the first incident. Sorry…thats my tongue in cheek humor.


    So CC_Alaska had it right then!

    #4663
    vegetarianGuy
    Participant

    Yeah CC_Alaska was on to something. Ok I will take a break from the forum. This gout businnes really sucked too much out of me.  Good luck to all the confirmed gout sufferers. Either way I will be keeping an eye on my diet and my uric acid levels. Peace out.

    #4668
    vegetarianGuy
    Participant

    I just can't leave you guys alone Laugh Got my Artic kit today. Kind of addicted to pricking my fingers now. Made 10 pricks in all, 4 for actual testing and 6 as test runs (sticking with level 5 prick). No more tests for today unless I start on my feet.

    My results of the 4 actual tests between 11 and 11.15am. All done properly with thoroughly washed and dried hands. Blood drop fully covered the test area in all 4 tests.

    test1- 309/5.1

    test2-298/5

    test3- 375/6.3

    test4- 375/6.3

     In the last two tests I overflooded it with 2+ drops. The last two readings must be accurate then.

    375/6.3 is looking good I must say from 490 I apparently had.

    #4669
    vegetarianGuy
    Participant

    Ok ate food and two hours later did two more tests one after the other and it's up now.

    test5- 470/7.8

    test6- 494/8.2

    Why 24 point difference between tests5 and test6 when they are only one minute apart?

    #4671
    zip2play
    Participant

    I would attribute the range (7.8-8.2) to expected testing error. I would interpret them as essentially the same reading, 8.0, with an error of +- 3%. That's quite good for a home test.

    Big difference after a meal though, eh. (What was the meal? high purine? meaty?)

    Brings up an interesting point though. Since we generally have out blood drawn in a doctor's office on an empty stomach (to get a reliable triglyceride and LDL cholesterol level) we might all be walking around with uric acid considerable above what our lab tests say.

    VegGuy…you must be rich because those strips are a couple bucks apiece, right?Cool

    #4674
    vegetarianGuy
    Participant

    zip2play said:

    I would attribute the range (7.8-8.2) to expected testing error. I would interpret them as essentially the same reading, 8.0, with an error of +- 3%. That's quite good for a home test.

    Big difference after a meal though, eh. (What was the meal? high purine? meaty?)

    Brings up an interesting point though.

    VegGuy…you must be rich because those strips are a couple bucks apiece, right?Cool


    Ok read the user guide from start to finish and according to the manual:

    Point 1- Putting two drops or adding a second drop will give false reading. I am guilty of doing that Cool

    Point 2-  To get accurate reading you must be on empty stomach Wink

    Since we generally have out blood drawn in a doctor's office on an empty stomach (to get a reliable triglyceride and LDL cholesterol level) we might all be walking around with uric acid considerable above what our lab tests say.

    Refer to my second point from the guide book. Looks like accurate readings are the ones that are done on empty stomach.

    Anyway what I ate for lunch was 4 x boilled corn on the cob, ravioli with spinach stuffing, plain probiotic yoghurt with fresh cherries cherries. I was hungry 🙂 Hey I am veggie so no meaty stuff for me.

    I am not rich just paranoid when it comes to health Wink  Yeah they are  just under £1 for each strip. Still less than a pint of beer. It was first day so I got carried away.

    #4676
    zip2play
    Participant

    I am amazed that a meal like the one you had would raise your uric acid even an iota.

    Anyways, my point about uric acid testing on an empty stomach is a good one. After all, the solubility of uric acid is not affected by a package insert, it remains what it is. THus there's no advantage to knowing that part of the day, with an empty stomach, your uric acid will remain in solution if post-prandially you will have serum that is highly supersaturated with UA just looking for a joint to hammer. Probably some testing at both times is an excellent idea.

    Hmmm, just under a pound apiece…that's a LITTLE cheaper than I thought they were.

    #4681
    hank
    Participant

    That's probably why if someone detected with high UA under normal lab circumstance(empty stomach), he/she is already at tipping point of threashold across the supersaturaion. Plus with the gout related defficiencies(over produce/under excretion), crystal would come enmass as soon as they capture the joint. This concludes dietary does make a difference expecially if you are not treated long term.

    #4761
    trev
    Participant

    I'm sure most, but probably not all, sufferers of Gout would like to follow a dietary cure rouite if they could.

    Due to the fact that levels of UA in the blood are so variable and triggers so individualised this becomes something of an unobtainable 'Holy Grail'- and to default to the  drug cure is all too easy, especially if pushed by your Doc!

    I would have thought 3% was a good accuracy for home testing given the equipment spec of 6x that- so so long as you do the tests under similar time and conditions then to look for a 20% overall reduction in UA over time, would be readily attainable- if you are prepared to stick to a tough diet totally for long enough.

     My 2c – no expert!

    #4762

    Trev, I think you are right about gout sufferers preferences for dietary cures.

    I just wish they would treat it more seriously and methodically.

    Perhaps thy will read a better approach to gout and diet.

    #4780
    vegetarianGuy
    Participant

    Guys I am back. To recap the pain that I felt in a 1cm diamater area on my left toe joint on pressing with my finger had gone for last few weeks.  The area never felt completely normal though but atleast the sharp pain which i felt on pressing with my finger was gone. I even bought Nike FREE line of shoes for extra comfort (nice comfy shoes btw). Strangely the left shoe always felt slightly tighter than the right one even though there is no obvious swelling. 

    Anyway today I went for a long walk with my wife. We walked 4 hours at casual speed. Drank water and ate tons of fruits. By the end of the walk my left  toe joint was hurting again. The pain when I press with my finger is back with original force. I have no typical gout like swelling or any discolouration. I can walk kind of normal but don't feel normal nor have felt completely normal there ever since I had this problem2+ months ago.

    Atleast the pin point accurate pain on pressing had gone but even that is back after today's walk. additionally my right toes at the exact same spot is not  feeling completely normal  Although there is no pain on pressing the right toes joint.

    I am starting to think that maybe I have something other than gout. Ok I really don't know what the hell I have Embarassed  I think I will have to see another Rheumatologist. This is breaking my heart!

    #4778

    Here to help the heartbroken.

    Stating the obvious, you need a proper diagnosis, or you risk wasting time and money.

    I would advise that, whether you return to a doctor, or find a new one, insist that the pain is destroying your life and you must have a diagnosis. Do not offer opinions until you have that diagnosis, simply state the symptoms, but exaggerate the effect they are having on you.

    Do not be seen walking. Get wheeled to your appointment, and if you must get to your feet, hobble and limp. I know you’re British, and a wince is too emotional, but we really need (stifled?) screams. When confronted by people who have perfected the art of faking concern for your health, you must play your part and take your role of the needy patient seriously. Do not disappoint by being anything less than the perfect patient.

    If you feel a relevant point might have been missed, you must express it in the form that “Dr X said I might have …” or “Dr Y said if nothing improves I might be tested for …”

    The clear diagnosis for joint problems, when X-rays reveal nothing is to invade the joint. Normally this is done painlessly with joint fluid aspiration, but might extend to surgery. CAT scans are a possibility, and a growth area for gout diagnosis, but I do not think the techniques are mainstream enough to expect anything yet.

    The other alternative is to try zip2play’s colchicine diagnostic test – if colchicine fixes the pain, the chances are that it is gout.

    #4792
    trev
    Participant

    When I first got gout in my L.ankle, a few years back, I was caught out enough to get it x-rayed in casualty. It felt like it was broken- and I had actually broken this same ankle 20+ years ago.

    I mentioned I suffered from gout and they brushed the comment aside.

    Nothing detected , and I got pained looks as presumably an imposter would.

    After a decent few days interval,' Big G' showed its hand and the ankle went through the usual.

    Until we get that double energy x-ray [developed in Canada] we will never get a fair hearing (on average, anyway) – unless lucky enough to meet a fellow sufferer.

    http://w1.siemens.com/press/en…..905045.htm

    On the issue that I first meant to address here, your symptoms ,Veg Guy, sound just like mine, and that is indisputably gout!

    Yours may not be, but I would guestimate much higher than 50/50 chance and the fact that you are here seems to indiicate your suspicions also.

    Good move- the more you know the better, though everyone would wish the problem miles away- with a bent politician,say!

    TBH – if you got away with 4 hours on the hoof you were lucky and I would expect you might pay the price sooner, rather than later.

    This will depend on your SUA status more than anything- but without some Colchicine, as a standby treatment backup I can understand your wanting to get a diagnosis as you won't get the drug without one.

    I think it's good that you at least don't have to go through the worrying business alone- as many (including me) have done in the past and at least here, people really do 'get it', for once – in more ways than one!

    #4794
    vegetarianGuy
    Participant

    Thanks guys. I read you mails few times but did not reply as  I don't know what to write Cry  I go to two  doctors they bloody say X-ray is all clear and swelling is not big enough to be able to draw fuid from the joint and I apparently don't have gout. The rheumatologist “specialist” suggested that maybe my feet are too wide Yell I am not buying that.

    What I don't understand is-

    a) Why my pain is not as hardcore as typical Gout patient where even slight movement or contact is painful? I don't have pain in the morning thing either.

    b) Why is my swelling not hardcore either? Or redness as I have seen in typical Gout patient photos?

    c)  Why is the pain in such a specific small area on the top of my left toe joint?? Although not exactly pain like in the right toe joint but I am feeling things on my right toe joint as well. That can't be coincidence.

    I will call my hospital's Rheumatology department and take it further from thereYell THANKS FOR LISTENING AND KEEPING ME SANE! :-)

    I had deleted the earlier photo so I have re-uploaded it incase anyone is still curious.

    #4795
    vegetarianGuy
    Participant

        >Good move- the more you know the better,

        Yeah I took an online “Test your Gout knowledge” test and got the answers 100% correct.


    >Yours may not be, but I would guestimate much higher than 50/50 chance and the fact that you are here seems to indiicate your suspicions also.

    According to another online  “Do you have Gout” test I got 30% probability based on my symptoms. I think  in reality it is probably 65% + chance that I have Gout.

    #4797
    trev
    Participant

    This lapsed site http://www.podiatry-arena.com/…..php?t=1242

    has some interesting comments about rheumatologists, but more to the point are some pointers as to the establishment mechanisms of gout in the toe- a favourite spot!

    Your pic doesn't show much to identify, so I can see why you can't get a diagnosis.

    Don't forget Gout is a form of arthiritis and the specialists may not be 'Gods'- but they do see a lot of cases for comparison

    I have a pic of my recent attack which would put yours to shame ;-D  – but I keep forgetting my sites where I can post my pics -and all old mails with links/passwords etc. gone on upgrading.

    Is there a simpler way to do it here?

    Since the attack the skin has peeled off like sunburn- attack as usual not a lot of fun- especially as I omitted the icecream treat at the time !

    #4798
    vegetarianGuy
    Participant

    Just got off the phone with Siemens and have been informed that two of my local hospitals HAVE DECT (Dual Energy Computed tomography instead of joint aspiration) machines. So I know where I am tying to go next Cool Not sure if the hospital doc will send me any where near the machine but it's better than going to a Rheumatologist in private practise with no direct acess to the machine.

    Looking at the image from http://w1.siemens.com/press/en…..905045.htm

    I assume the red parts are the crystals. The photo looks that of an advanced case. I wonder if it is any good for someone with early stage of Gout?

    #4801
    zip2play
    Participant

    My God, that is WONDERFUL. It seems to be an instantaneous definitive diagnosis if the red stuff is ONLY urate (but I know that nothing is ever quite so straightforwardWink.)

    But IF the red stuff is only urate look at the wonderful precision for the SMALL deposits all over the foot BESIDES the two obvious huge tophi on the bunion joints. So yes, it would be VERY good for decting deposits early on before there is any external evidence.

    I have never HEARD of those DECT machines but I'll bet that my insurance (U.S.A.) would not cover it although I would LOVE to have my right hand assayed…and my left KNEE.

    Fascinating stuff, VegGuy

    #4802

    I do believe that this is actually a great breakthrough. I had seen the press release a few days earlier, but it wasn?t until I saw the Siemens page that I realized the true significance.

    Their description is clear ? red = urate, blue = bone or calcium.

    Gouty Hand With DECT

    The real beauty of this is that the technique, by my understanding, simply involves loading the scanner with the right settings to scan the unique wavelength for uric acid deposits.

    From a brief look, it seems the technology is truly revolutionary. Much easier to detect the early stages of gout. They note that they frequently found unexpected uric acid deposits around tendons and ligaments. This happens before any clinical manifestations of gout, but renders affected tendons and ligaments susceptible to tears.

    So it looks like the beginning of the end for joint aspiration as the most reliable gout diagnostic. Probably a good thing. They note that one of the weaknesses of joint aspiration is the difficulty in performing the procedure when there is inflammation. Vindication for my earlier comment questioning the inability to test when there was NO swelling!

    #4808
    zip2play
    Participant

    I find something very thought  provoking about the first set of pictures, the tophi riddled feet.

    The RED of the urate is easily seen, but look at how the BULK of the tophi, especially the right bunion, is colorless (presumably blue according to the article.) Can we presume that the inflammation of gout is INITIATED by uric acid with urate remaining to be slowly replaced by CALCIUM, or bony overgrowth? That would certainly explain the reluctance with which some of these tophi dissolve even in face of preposterously low serum uric acid.

    The tophi LOOK like they were created by uric acid and then replaced by a calcium layer and then ANOTHER uric acid layer, replaced again with calcium…each time the urate forms atop the old calcium tophus.

    (Perhaps gout and pseudo gout are not that divorced from one another after all???)

    Hmmm, problem #2:

    Look hard at the blow up of GP's HANDS picture. Can anyone readily differentiate the red blood stream from the gout accretions? I can't and it would seem to be a problem source. Look hard at vast areas of red well away from the joints that look like capillary beds and then look at the affected joints thinking in terms of vasculature. Then the gout deposits aren't so cut an dried? If they can choose any color for the attenuation differences then why does the boloodstream have to be the same color as the urate????

    Look at the very tip of the left little finger…urate or bloodstream?

    #4809

    Thought provoking indeed.

    Now that you point that out, there is a similar effect on the hand image in my previous post, particularly on the right hand forefinger (click on the image for larger view).

    There are two more uric acid deposit images on MD Consult, but these are not as large, so difficult to make out the detail.

    I?ve emailed Siemens to try and get more images, but still waiting response. If I can strike up a dialog with them, I?ll ask about the calcium interpretation.

    A few things strike me about interpreting these images.

    Firstly, we are looking at reproduced photographs of indeterminate quality. These images are an interpretation of electronic data that the operators / diagnosticians will have access to.

    Secondly, we have no physical examination process to support interpretation.

    Finally, these images are quite possibly part of the work-in-progress, i.e. they may not be part of the study that accompanies vegetarianGuy’s first DECT image. In the text, they are very positive about the diagnostic quality of the process compared to traditional means.

    #4810
    trev
    Participant

    I noticed the RH vein also and wondered why the LH didn't so present.

    Maybe there are depositions on the RH veinous system not present on the LH

    In this case- it's possible that the discrimination of the scanner can't differentiate between certain of these variables.

    Also of interest is the suggestion that calcium and gout tophi are intermingling – this would help understanding but first thoughts are how much more complicated gout treatment could get with extra knowledge available now- but it must be a way forward.

    In course of treatment scans would be invaluable to address the re- triggering of attacks, whilst stabilising SUA.

    ***  Goutpal- if you can would you attach my recent 'attack' pic here as I can't do this at present!

    It would illustrate a typical attack and the fairly clear other foot to compare.

    #4874
    vegetarianGuy
    Participant

    Hello friends. I visited my GP today as I could not get direct Hospital appointment. My GP today referred me to the Hospital Rheumatology department. I have to wait for my appointment to come through now.

    Basically since my last post my readings have continued to be high. Ranging from 6.4 to 8.8. Today I took my reading first thing in the morning and it was 8.7. Then I measure it at my GP's place and it was approx. 8.7 too.

    My left toe continues to be in medium level pain. Not excruciating pain like typical gout sufferers though. I have also started to feel strange senstion in my right toe these days (no pain though).

    As things stand it is looks 95% certain to me that I have Gout Cry My reaserch basically has counted every other possibility almost out. Additionally I see two small white bits on my finger. I am not sure if it is Tophy or just some hard skin thing. I will post a photo later. If it is Tophy then boy I have gone from normal to screwed very fast! Confused

    Still holding on to the 5% chance that it was all a bad dream but I am starting to accept the invitable….

    I will come back with some Gout controlling questions later, currently I am too depressed.

    #4875
    zip2play
    Participant

    Indeed, it's depressing but look at it this way. Gout is a completely manageable disease that is no longer life threatening. With proper management, attacks of pain can be brought down to ZERO.

    Think how much more depressing a diagnosis of multiple myeloma, melanoma, or early onset Alzheinmer's or Parkinson's would be. By those standards, gout is just a stroll in the park.

    #4879
    vegetarianGuy
    Participant

    zip2play thanks for the reply. Yes you are right but based on my luck I wil probably get all of those diseases as well. Trust me, plenty of diseases on both my mum and dad's side to go around for me. Looks like everything my dad got later on in his life I am getting in my 30s!

    Man so many years of good diet, healthy living, no smoking or alcholol and what do I have to show for it? Yeah Gout in my30s! Wink Ok I am fit atleast but that will go downhill fast if I can't do much fitness.

    Ok some “IF”questions-

    -Q1) If I go on Allopurinol eventually and my blood uric acid  reading go under 6 then from my understanding I have to continue taking it for rest of my life to keep levels down. That is fine but can I continue doing fitness? Moderate weights? Cardio? Biking? Or do I have to wrap myself in cotton wool?

    -Q2) From the posts here it seems that diet can only do so much with the exception of maybe red meat, alcohol and few other food items that I have not consumed in 10 years anyway. So my question is that if eventually I am on Allopurinol with readings lower than 6 then do I have to watch out for high protein foods like chickpeas, tofu or other high protein vegetarian products?…..beans that some seem to suggest are a NO NO?

    Won't Allopurinol take care of that side of things?

    -Q3- Possible side effects of allopurinol according to wiki have been included below. How will I know if I am having just mild side effects or some of the more serious ones? What happens to the few who can't take allopurinol? Are they shafted? Confused

    The most serious adverse effect is a hypersensitivity syndrome consisting of fever, skin rash, eosinophilia, hepatitis, worsened renal function and, in some cases, allopurinol hypersensitivity syndrome. Allopurinol is one of the drugs commonly known to cause Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TENS).

    Allopurinol can cause severe pancytopenia if given with azathioprine or mercaptopurine, due to inhibition of xanthine oxidase which metabolizes these drugs. It can also cause breast enlargement in both males and females

    In conclusion I would like to say that  human body is nothing but a pile of  fatty red yellow stuff inside a skin bag EmbarassedYell

    #4880
    vegetarianGuy
    Participant

    Here is close up of two white looking spots on one of my finger (left hand). Different views of the same spots. Spot A is more defined and 1-2mm raised. Feels almost like a grain of salt when I rub with my thumb. Spot B is flush and not raised.  Could these spots be Tophy?

    Would it not be bit early for Tophy if I have not even had a severe full blown painful acute Gout attack?

    I will obviously show it to the expert when I get my hosptial appointment but as it could take anything from few days to few weeks to come through……

    #4891
    zip2play
    Participant

    Yes, VG it could very well be a tophus, or not. THe color is right, the placement is right  but it is a good deal too small for “average.” But then I am not too sure of what a “skin involvement tophus” would look like only refugees from an infected joint…and they are bigger.

    If I get around to my camera and photobucket, I'll show you a couple typical small tophi that I have left on my little finger.

    To answer your early questions.

    Once you get on allopurinol there will be no effect on your exercise tolerance.

    If you get your uric acid consistently below 6 or even 5 you will be able to eat ANYTHING you want.

    Those side effects are quite rare, the most likely after many years is an allopurinol skin rash.

    And an afterthought…from your reposted picture: Yes, it looks like a gout attack in your left bunion joint. I can see swelling and redness.

    #4893
    vegetarianGuy
    Participant

    Thanks for the post and the info  zip2play Wink Anything and everything is nice to read  for my current state of mind.

    If it is less hassle for you then you could mail me the images at-

    [email protected]

    You know you say that the white marks seem smaller than average but don't they start from small and gradually get bigger? They have to start small….no?

    #4898
    vegetarianGuy
    Participant

    Ok it's late in the night and I think I have read almost all gout related post online and on this forum. I feel like ranting Smile

    1st Rant- Waiting for the hospital to call me and give me an appointment with the next specialist is testing my patience. I want to get started with my treatment asap!

    2nd Rant- I think lot of doctors are useless. My bloody test readings from 2006-7 clearly shows that my blood uric acid readings were close to 8….. but the doctor told me back then that everythign was ok with my blood! I wish I had seen the sheet back then and not in 2009 when I asked for a copy of current readings.

    Which brings me to the clueless specialist I visited privately. Unless the toe is size of a football they don't take things seriously. Bloody hell if someone has high uric acid readings, Gout in the family, unexplained pain in the toe for 2-3months and older high blood uric acid readings from 2-3 years ago then obviously there is something wrong!

    3rd Rant- From my research strict vegetarians who are very fit, active, healthy and eat balanced diet have an extremelly low chance of getting Gout unless via their parents. My dad, granddad and great grandad were/are hardcore excess meat eaters and very greedy when it came to rich food. Thanks for screwing my life as I wil be paying the price for their lack of control! Yell This part of my situation is what I find most unfair! I wonder what my condition would have been right now had I been eating like them Confused

    4th Rant- I have a holiday planned in a week that involves fair amount of walking. I really don't know if I should cancel it or not. Hopefully drinking lot of water and resting a lot will keep things in check. I am just worried that I might get hit with my first hardcore Gout attack. If anyone is still reading then any suggestions to not get caught out while I am hiking? Btw in last two months I drank enough water to fill an Olympic sized swiming pool

    #4899
    vegetarianGuy
    Participant

    I have always had slight knee problems ever since I was a kid (non Gout related). I wonder how many times the discomfort I felt in recent years was related to my old problem and how many times mabye due to crystal formation.

    One thing is know 100% for sure currently- My toe joints and both knee joints are perfectly healthy  ie. there is no cartilige wear or any damage to the bones. So I hope that means that I am at early stage of Gout. On the other hand if the things on my finger is Tophi then I really don't   know what to make of it all as far as which stage I am in is concerned.

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