Help With Complex Potential Kidney/autoimmune Problems

[Emptyset]

Hi all, I wasn't sure whether to put all of this in the same post but I think it's a good idea because I think the problems may be related.

I was diagnosed with a UTI last August here in Bangok. It was persistent and required around 3 weeks of antibiotic treatment before I felt better. The urine test was clear, but the doctor diagnosed it through a swab of the urethral fluid. After the antibiotics, I felt better but still experienced some pain (in the urethra and also a dull pain around the lower back, not when urinating though) - this has persisted for the last few months. I happened to register with new doctor in the UK last week and a nurse gave me a couple of basic tests including a urine test, and was called in to see the doctor because proteins in the urine apparently pointed to a suspected kidney problem. She told me to return in three or four weeks for another test, and if the problem was still there, they'd send me for more tests. Unfortunately, I can't do that because I'll be in Thailand for the next three months or so. Anyway, in the last few days I've been feeling a kind of inflammed feeling around the groin/lower back area, tiredness and the pain in the urethra is slightly more than usual. It's similar to when I was first diagnosed, except the pain is less and there are no GI problems (initially, the UTI was coupled with heavy diarrhea, the worst I've ever had, which appeared to puzzle the doctor, but this also subsided w/the antibiotic use) or heavy fever.

I'd intended to ask for advice on here about what I think might be related (or behind) all this. I've had persistent health issues for the last three years. It all started with a UTI diagnosed again here in Bangkok three and a half years ago. But despite the antibiotics, a low feverish feeling and tiredness persisted for over two months after. A doctor in the UK diagnosed me with Reiter's Syndrome, an autoimmune disease. Anyway, after about three months I felt much better and pretty much back to normal. But about 6 or 7 months later, I had some sort of fever, which I suspected was an upper respiratory tract infection but in retrospect might not have been (I remember a sore throat, but can't remember if there was a cough or not). I was feeling feverish and more tired than I've ever been in my life for several weeks after, but I thought it was probably just a bad infection and was giving it time to go away on its own. After 6 weeks I went to the doctor, as I still felt very unwell - I probably shouldn't have left it so long but I hate going to the doctor, so... my hair was falling out - I recall the pillow being covered in hair every morning, and I felt cognitively extremely sluggish and not myself at all. After a week's treatment of antibiotics which did nothing, the doctor sent me for a few tests and my TSH came back at 9.6. So the doctor said I was clearly hypothyroid and the symptoms were down to that. Yet after initially feeling slightly better on Synthyroid (possibly a placebo effect), it didn't seem to be helping at all, and I was actually feeling slightly worse after a couple of weeks. The doctor told me to stop taking it and gave me another thyroid test - which came out at, IIRC, 4.9.

The problem was, even after the doctor said that the thyroid appeared to be back to normal, I was still feeling the same symptoms. And I still pretty much struggling with the same symptoms now, to a lesser extent than when the fever began, but still so much as to cause a dramatically reduced quality of life. This is mainly because of the cognitive issues I've had, I find I'm unable to deal with things intellectually in the way I could before I got sick. I just don't feel myself. My hair is still dry, thin and falling out. I don't seem to enjoy things the way I did before (like a mild anhedonia), I also struggle to maintain the same interests or have the same drive or motivation I had previously. I always feel below par healthwise, even on good days, but on bad days I get a fuzzy, washed out feeling that's hard to describe. It's like nothing I've ever felt from any other illness - almost a chemical feeling (either too much or too little of a certain chemical), or perhaps it's just the feeling of inflammation. This is sometimes accompanied by a mild feverish/hot type feeling. I've had trouble describing it to doctors and some relate it to a form of anxiety or depression. I'm 100% sure it isn't, the symptoms are totally physical - rather than, say, starting with mood and then manifesting themselves physically - and my mood seems to be affected as a secondary effect of feeling so below par all the time. When I first had the symptoms my mood wasn't affected at all, other than being unable to derive the same enjoyment from intellectual tasks, but now I'm feeling lower because all these health problems are affecting my life so much. Like most people, I've experienced anxiety and, very rarely, the odd day of depression and if you'd experienced these symptoms, there's no way you'd think it was in any way anything similar.

Anyway, apart from those symptoms, tests have also shown elevated liver enzymes - I was actually sent for a liver scan, and it was fine - and consistently lowered blood platelets since the symptoms began. The thyroid tests have been all around 5, except the last one which was 3.2 or around there. So the thyroid appears to be ruled out as the major culprit - perhaps the intial hypothyroid result was a secondary phenomenom. I'd been thinking these symptoms could be caused by an autoimmune condition, particularly as I've been diagnosed with Reiters Syndrome the year before. I'm not sure which immunology tests I've had, I know I've had ANA once which was negative - though it should be noted that I've been feeling pretty well each time I've had the tests done (thyroid included). I'm wondering if the tests might come out different if performed when I'm feeling at my worst. I've also had thyroid autoantibodies done, which again was fine. Also, I've been negative for all major diseases they've tested for (HIV, Hepatitis, STDs etc).

What I'm thinking is that I should deal with the kidney problem first, and then see a specialist in autoimmune problems. The problem is I don't have insurance here other than basic travel insurance and I don't think that'll cover any of this. So to save money I thought I'd first go to a labatory down the road from here in Saphan Kwai - which offers professional tests for relatively little money compared to the same tests in a hospital. I'll have the general tests done there and then present them to a doctor. I'll try to get BUN, Serum Creatinine and another urine test done there. And if it shows a problem I'm wondering whether I should go back to the urologist I saw last time at Phayathai hospital (which I wasn't too pleased with, the doctor was good but it cost over 5000 for some basic tests and a consultation - I bought the antibiotics he recommended myself at a pharmacy), or should I go directly to a kidney specialist?

So, as I say, the reason I included the stuff about the other health problems I've been having in the last few years is I suspect they may be related. I know Lupus can cause liver/kidney problems and perhaps other autoimmune conditions can too. So when I've dealt with the kidney issue, I'd like to see a doctor that specializes in general autoimmune problems to see if he can figure out what the underlying problem might be. Can anyone recommend one? And does anyone know what the other basic immunology tests are for autoimmune conditions? I know the lab does the ANA test, which I'll have repeated, but it'd be useful to have any other basic tests done there too, to try and save some money.

Sorry for the long post, I didn't think it'd take so long to explain things. But any advice would be much appreciated! Thanks.

[jrtmedic]

As you observe a complex and somewhat confused picture! I am not surprised you are concerned.

A site like this is perhaps not the best place to secure good advise about your problem and how to manage /diagnose/treat it.

Reiters Syndrome is not common and is a type of reactive arthritis which affects the eyes, urethra and joints. The syndrome is triggered by a bacterial infection acquired (usually) either sexually or via "food poisoning". Doctors may wish to exclude the possibility of your having a septic arthritis as a result of the original infection.

Your comments relating to your thyroid and the possible kidney problem highlight the difficulty of addressing your condition on a piece meal basis.

Ideally you should consult a Physician who will investigate your problem(s) in a structured and logical manner based on your history and a comprehensive physical examination. You may have difficulty in securing an approach such as I describe outside the "high end" private hospitals in Bangkok. It would of course be beneficial to find a physician who has had training/education in the West as language and cultural differences can impede the investigative process. You would also need to avoid the (often expensive) "blunderbuss" approach to investigation but I appreciate this could be difficult.

If at all possible you should return to the UK. Consult with your GP who will ensure you are appropriately investigated and who will , if necessary, instigate a specialist referral.

Apologies for not being more helpful. Best wishes

JRT

Edited January 4, 2013 by jrtmedic

[Emptyset]

As you observe a complex and somewhat confused picture! I am not surprised you are concerned.

A site like this is perhaps not the best place to secure good advise about your problem and how to manage /diagnose/treat it.

Reiters Syndrome is not common and is a type of reactive arthritis which affects the eyes, urethra and joints. The syndrome is triggered by a bacterial infection acquired (usually) either sexually or via "food poisoning". Doctors may wish to exclude the possibility of your having a septic arthritis as a result of the original infection.

Your comments relating to your thyroid and the possible kidney problem highlight the difficulty of addressing your condition on a piece meal basis.

Ideally you should consult a Physician who will investigate your problem(s) in a structured and logical manner based on your history and a comprehensive physical examination. You may have difficulty in securing an approach such as I describe outside the "high end" private hospitals in Bangkok. It would of course be beneficial to find a physician who has had training/education in the West as language and cultural differences can impede the investigative process. You would also need to avoid the (often expensive) "blunderbuss" approach to investigation but I appreciate this could be difficult.

If at all possible you should return to the UK. Consult with your GP who will ensure you are appropriately investigated and who will , if necessary, instigate a specialist referral.

Apologies for not being more helpful. Best wishes

JRT

Thanks JRT. I would certainly prefer to be back in the UK to deal with the recent UTI/kidney issue. Unfortunately it's not possible right now because I've got a million and one things to do here in the next couple of months. I thought one of the benefits of being here was that I could see a specialist in autoimmune conditions (possibly Bumrungrad would be a good bet?) - to at least rule that possibility out. I'm not sure the problems are caused by the Reiter's Syndrome, because after the initial few months following the UTI, the symptoms subsided and I felt much better. After I was ill with a fever the second time, the symptoms were quite different to when I had Reiter's. With Reiter's I had joint pain, a red rash on my hands, pain when urinating, a low fever and felt very tired. But after I was sick the second time, as I describe above, the main problems were cognitive, feeling tired/foggy (but a very different sort of tiredness to the Reiter's induced fatigue, it's hard to describe these things adequately), hair loss etc. All of those coud be thyroid related, hence the GPs in the UK focused on that angle. One doctor suggested, given my TSH had recovered to something like normal, that I might've had an acute thyroid crisis - or something like that - and my thyroid had recovered somewhat but was still fluctuating, hence the symptoms. However, he said if that was the case it was a matter of waiting and hoping it'd get better because it's not treatable.

-

The problem is, I feel like I've lost 2 and a half years already with this, given that the symptoms often severely affect my quality of life (especially, to reiterate, the cognitive dysfunction, which is mainly memory and concentration problems). And given the liver, and now subsequent possible kidney problems and low blood platelets, I felt that other autoimmune disorders should've been considered - yet two of the three GPs I saw in the UK didn't seem very knowledgable about these issues. I'd like them to have at least investigated the possibility of lupus etc - but only one doctor seemed interested in following up that angle, and I only managed to see him twice in two years (for some reason, he was very difficult to see). He suggested that it was probably an autoimmune issue, but the last GP I saw there said that as my TSH was within the normal range again, he had 'honestly no idea what could be causing you these problems.' And that I'd just have to wait and see. So regardless of whatever the UTI/kidney issue might turn out to be, I definitely want to see someone who specialises in autoimmune conditions, as they seem particularly difficult to diagnose.

Anyway, thanks for taking time to reply, appreciated.

Edited January 4, 2013 by Emptyset

[Sheryl]

Well first of all, while the idea of a single disease entity that accounts for all your problems is appealing, I think it is also most unlikely. There are probably two or more things at work here, and they fall under f=different medical specities.

Kidney: the only indication of a kidney problem (as opposed to a urinary, or genitourinary, infection) as I understand it is a one-time finding of protein in the urine-- which often accompanies UTIs and other infections, in which case it may not indicate a renal problem. Whether or not you have need of a nephrologist (kidney specialist) will depend on whether or not you still have proteinuria and whether or not it is in the absence of a UTI (for which you also need to be evaluated, see below).

The urethral symptoms you describe sound to me like possible chlamydia, which is also suggested by the fact that a urethral swab was needed for diagnosis. Nonspecific urethritis is also possible. In either case, you may still have it. In addition to a urinalysis, should get a urine culture and, if negative, a urethral swab.

The extreme fatigue, hair loss and general mental fogginess you describe do sound very, very much like a thyroid issue, I know you say the repeat TSHs have been normal; were free T3 and T4 also measured or only TSH? In any case a repeat thyroid panel inclusive of free T3/T4 is definitely indicated as is a serum cobalamin to rule out B12 deficiency. If it is neither thyroid nor mild B12 deficiency, CFS may be a posisbel consideration. In which case, Thailand is not a good place for either diagnosis or management.

I am not sure why you think you may have lupus, nothing mentioned other than the proteinuria (for which there are many possible reasons) fits. It is also rare (though not impossible) for someone with lupus to be ANA negative. No harm in repeating the ANA though.

In summary I suggest you get the following tests:

complete blood count (rule out anemia, infection

urinalysis

urine culture; if negative, culture of urethral swabbing

serum cobalamin level (rule out B12 deficiency)

thyroid panel (TSH, free T3/T4)

ANA

ALT, AST

If the lab you use cannot do a urethral culture, I'd suggest the Thai Red Cross Anonymous Clinic (see details under the pinned HIV thread. Very inexpensive, and they have probably more experience with chlaymidia and non-specific urethritis than anyplace else. In fact with the exception of the ANA, thryoid panel and serum cobalamin, they can do all the tests mentioned for you.

If the above shows persistant proteinuria and no UTI/GU or other infection that might account for it, then a visit to a nephrologist may be in order.

For the fatigue/fuzziness, let's see what the tests show. You frankly aren't going to get anywhere in Thailand with those complaints other than the tests I just mentioned and treatment of any abnormality they show.

BTW, just how elevated were your liver enzymes? Alcohol intake? Any regular medications or recreational drug use?

I am not sure

[Sheryl]

P.S. - can't believe I forgot - should also check your testosterone levels (assuming you are male- other hormones if female). And have them do an ESR (sedimentation rate) along with the CBC.

[Emptyset]

Sheryl, sorry for not acknowledging your very helpful post before, but I thought I'd wait until the results were back before I followed-up.

Anyway, I had all the tests suggested. Obviously the immediate problem is the UTI/kidney issue. The kidney tests I had (BUN, creatinine) are within the normal range and there is no proteinuria. However, the symptoms I described above persist. I called Phayathai Hospital where I had the urethral culture done, and they said that the UTI was caused by a staphylococcus infection. Unfortunately, they didn't tell me which specific staph bacteria is causing the problem, but my symptoms precisely match staphylococcus saprophyticus infection. This appears to be rare in men (I'm M/27), but can cause complicated UTIs. And I've never taken the recommended antibiotics for it. So I suppose the next step would be to take this to a urologist for him to suggest treatment? Any recommendations would be much appreciated, though I've found some useful suggestions for good doctors already on TV.

Regards the other tests Sheryl recommended - the majority were all OK/within the normal range. ANA was negative again so I think that conclusively rules out Lupus. I'm not even sure why I thought Lupus was a possibility. I guess it was because with the suggestion of kidney problems, elevated liver enzymes and some of the other symptoms sounding similar, I thought it may be a possibility even though I've never had the dermatological symptoms. Anyway, thankfully it's not that.

The tests that were out were the white blood cell count (4,100 - normal range 5000/10,000) - I'm guessing the bacterial infection could account for that. It says 'platelet smear' is slightly decreased, along with a plt.count of 125,000 (normal range = 150,000 - 450,000). That slightly low platelet count has been consistent for the past two years. The other thing is the thyroid, which seems a bit odd to me. T.S.H is back up at 5.6 (0.27/4.20), yet free T3 is higher than normal at 4.84 (2.02/4.43) and T4 is at the top end of normal. So I really don't know what to make of that. I do think, as Sheryl suggested, that thyroid symptoms most closely match my own. And it's been the only test that's been consistently out (other than the slightly low platelet count). Anyway, the other tests, testosterone, b12 etc were all fine. Testosterone was actually slightly higher than the average range. The liver enzymes were within the average range, although a little on the high-ish side. The odd thing about that is that when I was sent to the hospital for a liver scan due to elevated liver enzymes, I hadn't drank for two months whereas now I'm probably drinking 2-3 units a day, averaged out over a week. So I'm just not sure where that leaves me... perhaps the doctor that suggested that the thyroid was fluctuating slightly after an acute problem was correct. But if that's the case, it can't be treated and leaves me with symptoms I'm finding very difficult to deal with. I have read CFS sufferers anecdotal reports of their symptoms, but I think mine are much more closely matched to those who suffer thyroid problems, though as I say, I realize how difficult it is to describe these things.

It's really odd, I know I've already said this, but it just happened overnight. One day I was well (even though I'd had the Reiter's syndrome the year before, I felt completely recovered from that) - the next I had a fever and I've never felt right since. The one other thing I can think of is that I developed a condition which looks a lot like http://en.wikipedia.org/wiki/Lichen_sclerosus - I first noticed this about three weeks before I developed the fever. To be honest, I haven't had a doctor look at it, partly because it's embarassing and partly because it hasn't caused any trouble and is barely visible under most light now (though it was far more apparent when it first appeared). I hadn't thought previously that it was worth getting looked at because it seems quite insigificant, but I noticed when I looked it up again recently that it's linked to autoimmune/thyroid problems, so it'd be an indicator if nothing else I suppose. I was thinking of asking the urologist about it, but I'm guessing that I'd have to see a dermatologist to have it properly diagnosed?

Thanks again Sheryl, for the previous very thorough post. I think you've already saved me a lot of time and effort, as I was likely heading off in the wrong direction. I can't thank you enough.

[Sheryl]

There is no kidney problem. Just a lower urinary tract infection or possibly prostatitis. So yes, see a urologist.

WBC of 4,100 and platelets of 125,000 rate are of no clinical significance. Do not worry about test results that are just a little bit above or below the reference mean. Some hospitals would give wider ranges. These are probably normal for you. Ditto liver enzymes that are just a tad above normal. These reference ranges for normal are not set in stone.

In addition to a urologist it sounds like a consultation with an endocrinologist would be wise, I suggest Dr. Roassannee at Bumrungrad. Bring all test results with you obviously to avoid unnecessary repeat.

[Emptyset]

There is no kidney problem. Just a lower urinary tract infection or possibly prostatitis. So yes, see a urologist.

WBC of 4,100 and platelets of 125,000 rate are of no clinical significance. Do not worry about test results that are just a little bit above or below the reference mean. Some hospitals would give wider ranges. These are probably normal for you. Ditto liver enzymes that are just a tad above normal. These reference ranges for normal are not set in stone.

In addition to a urologist it sounds like a consultation with an endocrinologist would be wise, I suggest Dr. Roassannee at Bumrungrad. Bring all test results with you obviously to avoid unnecessary repeat.

Once again Sheryl, your advice is much appreciated. I shall go to see Dr Roassannee after I've got the UTI problem sorted out. Thanks again.