Keith’s GoutPal Story 2020 Forums Please Help My Gout! How often should I have blood test ?

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  • #17745
    nokka
    Participant

    I’ve been taking 200mg of allopurinol for 5 years now. I’ve not had a proper flare in that time – it took a few months to settle everything down when I first started, but since then everything has been fine. I’ve had an annual blood test to check uric acid levels and also a Liver Function test. They’ve always been fine.

    I have phoned today to book my annual blood test and been told I don’t need one. The GP is to ring me after the weekend to talk this through, but my general feeling is that, even if we don’t have symptoms, we should still have a check.

    How often do you guys have blood tests – and what is the general view on frequency if no symptoms ?

    #17757
    Keith Taylor
    Keymaster

    Hi @nokka

    It’s very good to hear from you again. I’m glad your gout is well under control.

    I’m amazed at your doctor’s response. These days, medical management id focussed on prevention, which is a good thing. I thought all doctors encouraged annual checks. I certainly cannot imagine why a gout sufferer would go for longer than a year without a uric acid check. For anyone on allopurinol, febuxostat, or other uric acid lowering treatment, I believe Kidney Function and Liver Function tests are also important.

    This is the best way to ensure that uric acid stays safe. In the unlikely event of an adverse reaction, the other tests will pickup any signs at an early stage.

    This is so ingrained in my health beliefs that I can’t even remember where the recommendations for annual checks came from. Both UK practices that I have attended have made annual checks a routine where you go for blood tests, have a telephone interview, and only consult the GP in person if there are any issues. For the life of me, I cannot imagine why a period longer than a year would be suitable for anybody on daily medication – unless it’s cost-cutting at the risk of optimal healthcare.

    I’d be interested to know why your doctor thinks it’s OK to go beyond a year. Does he think you should wait until serious ill health strikes before you bother him?

    #17768
    nokka
    Participant

    Yes, that was my thought too. I’ll see what he has to say when he rings me on monday and update then.

    #17851
    nokka
    Participant

    Very quick U turn by the doctor who rang me. On explaining that I consider having an annual blood test for a long term medicine a good idea – he quickly agreed. I asked why the test had been questioned in the first place and he spluttered something about last year’s result being OK so should remain OK. My view this is more to do with a much larger Practice taking over my smaller GP Practice and trying to make cuts.

    Anyway all OK. Thank you, Keith for your helpful advice as always.

    #17853
    Keith Taylor
    Keymaster

    That’s quite unbelievable, nokka. I’m glad they’ve come to their senses and arranged for your blood test. I hope the results are everything you want them to be.

    Let this be a warning to other gout patients – you really must take control of your own gout treatment. Your health is too precious to risk poor treatment for any reason.

    #18290
    nokka
    Participant

    I had my latest blood test. I expected the usual result, which has always been somewhere between 320 and 330 mmol. However, the GP rang me a few days after the test to say the test has shown 380mmol. He asked if I wished to increase by dose to 300mg of allopurinol as current policy was to get below 300mmol. Or whether, as I haven’t had a flare in 5 years since starting meds, I wished to stay as I am on 200mg. I said I’d think about it.

    Any views on this ? Could this have been a rogue test result which quickly settles to my normal range ? Do you think it is likely that our levels of urate increase as we get older ? (I’m 55 now – first attack at 40, started meds at age 50). I don’t think I have dramatically changed diet in the last year since my last test, so a little confused by the increase. I am aware though that I am getting more tingling sensations recently, which was a big feature after my last full blown attack 5 years ago. Any thoughts gratefully received.

    #18295
    Keith Taylor
    Keymaster

    I?ve tried to establish a link between uric acid and age. The evidence is mixed, with some studies reporting uric acid increases with age, and some reporting decreases. This is complicated, as a lot of the percentages are across different groups of people. I.e. what we really want are studies that track individuals over several years, and compare uric acid levels at different ages. I can?t find anything that simple.

    I?ve also looked to see if allopurinol effectiveness decreases with age. There is a suggestion that it might, but again, the information is not based around trends for individuals over many years.

    I like that doctors policy is to get below 300mmol/L (5mg/dL). Maybe it is a good idea to go to 300mg allopurinol now, but if you have doubts, best to get another test first.

    #18306
    nokka
    Participant

    Thanks for your input, Keith. I reckon most people who have gout are under-excreters. Also most people start to get gouty symptoms in middle age, which rather suggests our ability to excrete decreases with age. Whether that continues to decrease the older we get is open to debate. Perhaps when we get much older our bodies slow down and therefore we produce less urate for that reason. I guess we have to continue to monitor and be aware of what our urate levels are.

    I have decided after consideration to move to 300mg per day. That seems to be the standard amount anyway and I feel 380mmol as a blood reading was just too high. I have over recent times been more tingly also, so I think it would be silly to ignore the signs.

    I’ll let you know if and when things change. Keep up the good work, Keith. This site has been an enormous help to me and, without doubt, many others.

    #18334
    Keith Taylor
    Keymaster

    nokka, you’re right about continuing to monitor and be aware of urate levels. That takes us back to your original post. It’s madness to me that any medical staff should think it right to go for more than a year without a uric acid test. That’s also the opportunity for a full range of tests to measure other important body functions.

    For me, annual testing is one of the few fixed general rules about gout. Most aspects are very personal. Each person has their own profile of uric acid production and excretion, and these change up or down with age. So personal targets and dosing that is adjusted for blood test results are vital. It seems wise to go to 300mg now, but I have an issue with describing it as a standard dose. I do not believe in standard doses of allopurinol – only personal doses that change over time. In a few years time, you might go back to 200 or increase to 400. The only wrong dose is the dose that fails to make you safe. I’ve been personally horrified by a friend who got the ‘standard 300 mg allopurinol dose’ for many years. He never got any dose follow-up testing/adjustment. As a result, the last few years of his life were filled with gouty misery, despite his belief he was doing everything right. I’m so pleased that you have the power to fight for your right to blood tests, and have the knowledge to make your uric acid safe.

    If I’ve played a small part in that, your kind comments make me very happy indeed. It’s nice to think we might be swapping gout stories for many more decades.

    #19139
    Graham
    Guest

    Uric Acid Blood Test Results are in!

    Hi there

    Thanks for taking the time to do the website, it’s been a great help.

    I’ve been diagnosed with gout and had my blood tests a fortnight into the last bout, I was .55, I am assuming mmol/l? If I am honest I forgot to ask the units . Generally I get a full session that lasts about a fortnight on my left big toe about every 18 months and shorter sessions of day or two long ouch more frequently.

    I am 5’8 and 15 stone. I work all day stood up at a workbench with a concrete floor. I’ve recently installed some 1/2 inch vulcanised rubber to help with the cold. Exercise isn’t much more than an occasional 2 mile cycle to the workshop. At least one of my uncles suffered very badly with gout (according to my mum).

    Since finding out is probably gout (6 weeks ago while waiting for the blood results), I’ve lost half a stone just through eating more properly, been drinking much more fluids and drinking 330ml of cherry juice a day.

    This last bout came off the back end of eating and drinking things like porter beers, fructose enriched fruit juices and a host of other stuff that I have since learnt may not have been the wisest of choices.

    My doctor has been very helpful offering medication or, as the attacks haven’t been too frequent, the option for me to see if I can control it through diet. I have opted for the second choice for the moment. The only thing that seemed odd was her advice not to buy a uric acid tester and I wondered what your thoughts might be on this; I am leaning towards buying one but would like some advice. Otherwise I am uncertain how I can check any dietary changes are any use?

    Once again, thanks for the help and support through your website, it’s so far proven invaluable.

    Kind regards

    Graham

    #19158
    Keith Taylor
    Keymaster

    Thanks, Graham, I’m glad my gout website has helped you.

    From the uric acid summary below, you can see that 0.35 is the absolute maximum to avoid gout, and 0.30mmol/L is the safe level to allow for natural fluctuations. I don’t know of any diet improvements that can lower uric acid by almost half. My personal advice is that you should focus on a diet that is good for general health. I recommend alkaline or Mediterranean Diets, but you should discuss this with your doctor. As a general guide, most things that are bad for gout are also bad for general health. Avoiding processed food with additives is healthy. I always think that, if there is an ingredient you wouldn’t order as a dish in a restaurant, don’t buy the “food.” Fructose Fricassee? I don’t think so!

    It is almost certain that your gout is genetic. Other possibilities are certain medicines for other health conditions, or exposure to lead or other environmental toxins. If it is genetic, the only option is uric acid lowering medicines. I’d advise arranging for a 24-hour urine test. This will help your doctor decide which medicine is best, though allopurinol works in all cases, so most doctors do only do this test if there are complications.

    People have accused me of pushing pharmaceuticals. That is certainly not true, as I am a firm believer in natural healthy eating. I simply do not know of natural ways to halve uric acid, just as I don’t know of diets to cure short-sight. I wear specs, and take allopurinol. I also eat healthy most of the time.

    On uric acid meters, I tend to side with your doctor, for two reasons.

    1) Getting consistent results is hard. You have to be very precise in the way you test yourself. Think of the exact routine that nurses adopt when taking blood samples. Then add the complications of potential contamination from capillary blood compared to venous. It is possible to adopt a strict regime and get accurate results, but you have to be very controlled, and persistent.

    2) I used to think that my uric acid tester would help me identify better food choices. It really is not that easy. To link certain foods to uric acid changes, you have to test, retest, and continue testing until you get 50 accurate associations. Your diet has to be boring as hell to do this. To be clear, you have to eat exactly the same food for 14 days, then introduce one change for 14 days, and keep recording your results. To remove any doubt, you have to repeat this 50 times. That is the scientific way, though you might get useful feedback with less rigorous testing. On reflection, I should have got healthy eating habits first, then used a tester to tweak a healthy diet for lower uric acid. I eat healthier now than I’ve ever done in my life, but I still don’t have enough consistency to get accurate scientific data from any changes I introduce. If you are determined to test your own blood for uric acid, I can help you work on removing inconsistencies. You have to be prepared to spend a lot of time on this.

    In summary, I think healthier eating is always a good idea. Fad diets are useless, but eating styles that are universally accepted as generally healthy will always be good for gout, especially if you slowly lose weight. Little tweaks like extra coffee and low-fat milk help. This will reduce uric acid, but is unlikely to make it safe. Also, dietary changes take months to have positive effects, and every day that uric acid is over 0.35mmol/L is another day of joint damage, even if you are not in pain. Consider allopurinol as a damage limitation option until diet improves. If all goes well, you can reduce the dosage, possibly to zero, in future. That saves your joints from permanent damage.

    I hope this helps you Graham. If anything I have written isn’t clear or helpful to you, please let me know. I’ll try to do all I can to help you work with your doctor to keep you safe from the ravages of gout.

    • This reply was modified 6 years, 10 months ago by Keith Taylor. Reason: Changed 'a year' to 'future' as we never know how long it will take
    • This reply was modified 3 years, 5 months ago by Do Not Post.
    #19161
    Graham
    Guest

    Thanks for the speedy feedback. I have been looking into things as best I can and must admit that the damage limitation idea of meds, diet change and future potential meds cutback is starting to look a little more like the root I will take.

    I take it .55 is a little bit worse than I imagined?

    The only medication I take regularly is Omeprezole 20mg. This used to be daily, but some months ago I stopped drinking diet coke as I noticed it was always making my nose feel stuffy after drinking and the daily need for omeprazole dropped to about fortnightly within about a week.

    At least one of my uncles suffered badly with gout.

    Looks like a change in diet is long over due, I used to be very fit and healthy but have allowed *ahem* middle aged spread to take root a little more deeply than I like to admit to. I shall look into the diets you mentioned as I like Mediterranean food.

    I will most likelt act on your advice and see the doctor again and go for immediate damage limitation through the meds coupled with a changed in dietary habits.

    Joy of joys 🙂

    Happy new year and thanks for the support you offer everyone 🙂

    #19162
    Graham
    Guest

    Was just noodling through the facebook pages and noticed this picture: https://www.facebook.com/GoutPal/photos/pb.139403300784.-2207520000.1420242074./10152488103010785/?type=1&theater

    That’s pretty much exactly what my left foot goes like. Been trying to make head and tail of alkaline diets and must admit to being close to admitting defeat (for the moment). If I have it right I need a high alkaline diet vs acidity (about 80/20) but the acid levels aren’t the acidity of the food when it’s eaten, rather when it’s digested – which can be vastly different things?

    The first step would seem to be to simply start eating a balanced, portion controlled, none processed diet with plenty of fluids and then fine tune from there?

    Once again, thanks for the help and apologies if I seem to be pestering.

    Kind regards

    Graham

    #19168
    Keith Taylor
    Keymaster

    Hi again, Graham.

    First off, you are not pestering. I run this forum because I like helping people control their gout. Your messages are exactly what I want every day. If you don’t want to wait for messages to be moderated, you can log in before you post. As you are on Facebook, that’s very easy. Just click the Facebook button and ignore the username/password boxes. The forum software will accept your Facebook details, but it does not see your Facebook password.

    The relationship of gout to Omeprezole is not clear. Another gout sufferer asked about it recently, so I looked for relevant research. My results were inconclusive, but there is not very much research. In this situation, I tend to believe that there is no strong link between Omeprezole and gout. As you say, you only take it every other week now, so I can’t see that this would cause a significant uric acid increase. The only way to tell is to get uric acid blood tests without Omeprezole and compare them with tests after taking it.

    I know exactly what you mean about the middle-age spread. You’ve passed the biggest hurdle by recognizing you have to do something about it. Now all you need to do is take action.

    I understand your difficulties trying to work out alkaline diets. I’m trying to condense the research into something easy to understand, but it’s difficult. I know there has to be an easy way to explain it, but I’m struggling to find it. The closest I’ve got to is a phrase from a nutrition writer who says, from memory: “Eat food, not too much, mainly plants”

    I hope I remembered that correctly. His points are:
    1. We should eat real food, not the food-like substances manufactured and sold by certain sectors of the “food” industry. This eliminates lots of additives from our diet that might contribute to increased uric acid.
    2. By eating just enough food to maintain our personal level of physical activity, we avoid weight gain. Excess weight has been shown to be associated with gout in many studies.
    3. Fruit and vegetables are not associated with increased uric acid, whereas meat consumption is associated with increased uric acid.

    Point 3 is harder to accept for most people. As someone who enjoys meat, and having been brought up to relish it, I automatically rebel against the idea of becoming vegetarian. Yet, I love eating fruit and vegetables. My way forward has been to push myself into reducing meat consumption, in favor of plant-based meals. I love spicy food, so vegetable curry has become a regular feature in my diet. Many meat-based recipes can be improved by adding lots of vegetables. For example, a mince-based recipe such as shepherd’s pie is much nicer to me if half the meat is replaced with mixed vegetables. If you then serve it with a selection of steamed or roasted vegetables, you soon have a tasty meal that is a good part of an alkaline diet. I now avoid buying meat, and I realize that the basis of a good diet starts with changing shopping habits. If you have a healthy shopping basket, you have to eat healthily. In terms of an alkaline diet, this means for every meat/fish product that you put in your shopping basket, you have to add at least 4 fruits or vegetables. As soon as I realized that, I realized how easy it was to make your diet healthy. I also realized that it is quite a challenge to make that change. I have found that gradual change works best.

    Shop as normal, then look at the ratio of meat/fish to fruit/veg. Each week, swap one flesh for plants. It helps to seek out some tasty recipes for fruit and vegetable that you enjoy. Always remember that this is not a diet, but a style of eating that promotes good health, without being fixed regime. Gradually, you improve your eating habits, then one day, you realize that you eat to live, not live to eat.

    Obviously, this is my personal approach. It might not work for you, but there is probably lots of things you can do. That’s the beauty of this forum. We can all offer different experiences, and choose whichever way works best for our self.

    #19171
    Graham Ashford
    Participant

    As a summary of what I think I understand so far.

    Cut back the meat, eat more veg, avoid processed foods and generally take the healthier options of food that most of us know we really ought to be doing anyway. To aid with this I will try and get a better handle on alkaline foods (once digested) but always ensure there is some acid in the diet after digestion (around 20 – 30%)?

    Additionally I am still a little confused over the uric acid tests and ph urine tests. I am wondering whether the urine tests (taken each time I go to the loo) would give a nice understanding of tactical acidic levels in my urine and as such me; but wouldn’t a uric acid blood tester help with a more strategic idea of knowing that I am headed in the right direction if taken once a week or even month? Or, is the urine ph as good if not better indicator with accurate records?

    Lastly I have an appointment to see about daily meds in the immediacy to get me down from the apparently dangerous levels of .55.

    I’m more than happy to make dietary changes to my life and frankly use this as a long over due spur to make some much needed changes to my once quite healthy lifestyle, but just want to make sure I am slowly headed in the correct direction 🙂

    As ever, thanks for the time.

    #19246
    Keith Taylor
    Keymaster

    You’re right in your second paragraph, Graham. Protein foods are acid forming, so keeping these to around a quarter is a good general rule.

    Uric acid and urine pH are two completely different subjects. Uric acid is the specific organic substance that is the foundation for gout when it turns into crystals. Aim as low as possible for uric acid. Urine pH is a measure of total acid/alkaline load at your kidneys. Increasing it through an alkaline diet makes uric acid more soluble and helps excrete more. I hesitate to use the word ‘aim’ in this context, but aim as high as possible for urine pH.

    A weekly uric acid blood test will certainly help you understand if your strategy is working for you. My only concern is that, until you take the time to learn to test consistently, it is easy to be distracted by the occasional false reading. You can reduce this my being meticulous in cleanliness and have an exact testing routine that always produces the same drop size.

    I feel you are doing the right things to promote a healthy lifestyle. Keep posting, and I’ll try to keep encouraging you to improve.

    #19271
    Graham Ashford
    Participant

    Keith

    Thanks for the reply it is very helpful as I try to get a handle on things as there is a lot of confusing info out there. Here’s another attempt at the uric acid, urine ph value understanding.

    1. Urine pH is a measure of my urine’s pH, not my blood which for generally being alive needs to be about 7.4.
    2. Urine pH is a reasonable measure to help resist forming kidney stones through too much acid or alkaline but little else.
    3. Maintaining a healthy urine pH (about 7 – 7.5) is an useful indicator of how my diet is affecting my kidney and urine.
    4. By using this technique of measure I can gain a useful guide (but only a guide) that my new eating regime is healthy – against this measurement only.
    5. Combined with what I (hopefully) understand about eating, now specifically thinking about my gout, I stand a better chance of strategically lowering my uric acid levels.
    6.However the only sure measure of uric acid levels are through blood tests (best done by the doctor) but also by myself (over time as a less accurate trending tool).

    My newly revised plan is:

    Continue trying to eat a healthier mix/proportion of healthy food (following 80/20 rule) lowering my weight by 1-2lbs a week.
    Drink plenty of fluids including about 4 cups of coffee, 1 cherry juice and water (sometimes with fresh lemon to add taste.
    Take 1x 100mg Allupurinol a day (just prescribed from the doctor).
    Eat plenty of fresh fruit and veg as snacks rather than ‘snacks’.
    Keep my feet much warmer in the workshop with the addition of rubber flooring, thermal socks, heating and massage during the working day.

    I’m thinking of getting a uric acid tester (not to live by so much but measure any trending over time and I enjoy this sort of thing), but will use doctor’s blood tests as more accurate measures. I was thinking this one looked ok nand wondered of your opinion?

    http://www.goutcare.co.uk/uric-acid-and-glucose-meter-kit-with-an-extra-25-uric-acid-test-strips-and-10-free-sterile-wipes.html

    Anyway, as ever, thanks so much for your thoughts, already eating better I have lost just under half a stone in 3 weeks which I am very pleased about, I appreciate your time and any feedback.

    Kindest regards

    Graham

    #19278
    Keith Taylor
    Keymaster

    Hi Graham,

    That plan looks excellent to me. I also like your 6 point summary, or rather 5 of them.

    Point 2 is not completely correct. It is true that alkaline urine pH will reduce kidney stone risks, at least from urate stones. However, there is a significant body of evidence that suggests an alkaline diet has many other health-promoting properties. Of course, this inevitably leads to wild claims, often used to promote expensive supplements. My take on this is to avoid supplements, and change my diet to be more plant-based. I setup foodary.com to explore the general aspects of alkaline diets, though I don’t spend as much time on it as I would like. If you are interested in exploring general health benefits of alkaline diets, then I have a forum at foodary.org, and I would appreciate any interest you might show in that project.

    Interestingly, Mediterranean-style diets are intrinsically alkaline forming, though not usually tested for effects on urine pH. There is a wealth of information on health benefits and Mediterranean diets. Again, for anyone interested, foodary.com is my place to explain general health benefits of personal eating plans. This goes beyond the gout focus that I discuss here.

    On uric acid meters, I do not believe that any one meter is better than another, as I think the basic technology is similar. That leaves us with quality, after sales-support, and price. I’m not in a position to compare quality or after-sales. My best price search found Urit 10 Uric Acid Test. I’ve always had excellent after-sales support from amazon.co.uk but this does not include technical support.

    Congratulations on the weight loss. 7 pounds in 3 weeks is excellent. I hope it has given you a basis for better eating habits that will help sustain more improvements to your health.

    Thank you for your continuing support, Graham

    #19328
    Graham Ashford
    Participant

    Once again thanks for the feedback.

    Thought I’d write up my Alluprinol 100mg experiences so far, as much for here as for my own records if that’s OK?

    Took the tablet (about 0900) with some porridge, berries, glass of water and a cup of black instant coffee and thought I was going to be sick about a minute later, wasn’t in the end but spent most of the day feeling ill (nausea and drowsy) and a couple of bouts of diarrhoea. Been able to function all day, just not feeling too well. By about 2000 last of the nausea left me.

    I don’t normally react to tablets and there’s an outside chance I may have just been ill in general I suppose.

    The plan at the moment is to continue with the same food each day and tablet regime and see whether or not the same thing happens. If it does I guess it’s another trip to the doctors to see if there’s a slightly less reactive plan B 🙂

    All the best

    Graham

    #19380
    Keith Taylor
    Keymaster

    Oh dear, Graham, I’m sorry to read about your sickness. I do hope it is not allopurinol related. The only way to tell is to see if it continues every time you take it. Another idea is to try allopurinol before food, or an hour after.

    Sometimes, it’s just coincidence. Sometimes it’s anxiety-related. If all else fails, there is now the alternative of febuxostat (Uloric/Adenuric).

    #19390
    Graham Ashford
    Participant

    So far no re-occurrence of the first day’s symptoms, so hopefully a bit of bad luck timing on an illness or maybe first time blues? Either way so far so good, thanks for the thought.

    #19419
    Keith Taylor
    Keymaster

    Excellent news, Graham.

    #19851
    Graham
    Guest

    All seems to be making positive progress so far. Following the plan above and your eating advice I am down to 14 stone 2 lbs so far lightest I’ve been since I passed through that weight). So feeling quite upbeat about. I occasionally feel my foot ‘starting’ to have a flare up that never quite seems to bite, I’m always trying to make sure that I drink enough fluids.

    Since paying more attention to my feet in particular I have noticed that my feet get very cold at work. Something I have always ignored in the past knowing that a hot shower at home will thaw them out. However, I have noticed that the cold gets through to myleft foot a few hours ahead of the right and almost all of my flare ups have come to my left foot.

    I decided to buy some heated insoles for when I am in the workshop, and plumbed for the X5 Blazewear ones and they have been superb, I’ve written a review on my website here in case anyone’s interested: http://greenleaf-workshop.co.uk/blazewear-x5-heated-insoles-review/ I utterly recommend them, my feet haven’t been cold in the workshop since.

    As ever, thanks for the continued support and help.

    🙂

    #19855
    Keith Taylor
    Keymaster

    I like the sound of that, Graham. That’s 2 good news posts today 😀

    Dehydration and prolonged exposure to cold are two things bad for gout, so it’s great that you’ve got them covered.

    Gout is bad because it comes and goes. I’m not saying this to prick your bubble! It’s great that you are more comfortable now. I’m just saying that were here for you to help through any future bad times, as well as celebrating the good times.

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