I saw GP yesterday as I had an acute pain in my side and groin. I was diagnosed with kidney stones and warned to expect severe pain which, fortunately, has not been too bad. I am to go for an ultra sound scan as soon as it can be arranged - whenever that may be. Also I have to take a tea strainer into the loo and filter my urine - I leave this to your imagination and hope it's not too much first thing in the morning.
But the most alarming thing about the appointment was getting the results of my recent routine blood test for PMR/GCA. My ESR is at 49, almost the highest it's been since I was first diagnosed some 19 years ago. I was shown the graph of the readings on GP's screen and it's been steady mid to low twenties for most of that time. It's possible that the kidney stones could have affected this reading and I'm to have a further blood test at the end of the month so hope it will be lower.
The GP I saw - new to me - seemed very good and knowledgeable until I asked about adrenal insufficiency which he said couldn't happen below 2.5mg and he said he had never encountered a case above that in 30 years of practice. QED! Thanks heavens for this forum which has kept me so much better informed but I wonder what one does if encountering this attitude when showing symptoms of adrenal insufficiency before getting that low.
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maria40
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Another resounding WRONG!!!!!!! There is a lady on this forum who had got to 2mg and felt fine - until her rheumy sent her for a routine synacthen test because that was what he did (good man). She was found to have NO adrenal function at all. Cue major panic and emergency kits and dire warnings about doses when ill and a switch to hydrocortisone - which didn't suit her at all and she went back to pred. She's OK - but it can happen. There was a recent article froma London endo group that many can function on 2-3mg.
Your kidney stones sound agonising. I am sure we get braver. I hope that your inflammation levels soon settle, everything has an impact. What is your current dose of Pred?
The Endocrinologist that I saw, really had a different take on the Adrenal issues. Perhaps the GP meant 2.5 for an Adrenal crisis? I have been told 3 mgs for my final Synacthen Test. The Endo paid attention to the failing results at 5.5 though. If you are worried, perhaps an Endocrinologist referral could be put in the system. My GP looked shocked when I stated that my fatigue could be related to my Adrenal function and said “ oh I don’t think you have Addisons”! My Rheumatologist referred me .Good luck with all this!
Thanks. I'm not in too much pain which I hope indicates that I have passed the worst of the stones. I've just reached 6mg on DSNS. But I'm now wondering whether I should cut the calcium in my diet which is slightly worrying as my last Dexa Scan results weren't good. putting me in the osteoporosis range
I was wondering about this. I take AdCal and have a fairly high calcium diet with plenty of cheese and yogurt. I also find high potassium food like bananas and pumpkin seeds good for my SVT. GP didn't mention calcium but I assume I should continue with the AdCal as I am, according to my last DexaScan in the Osteoporotic range.
Given the stones I'd speak to the consultant. I developed grit in the bladder (very irritant and caused cystitis!) any time I didn't drink enough. I know others who developed grit like that or even gall stones because of the calcium.
My T scores were: Lumbar spine -2.1 L1-3; Hip -2.5; Femoral neck -2.2; Forearm -3.7 RT; I understand that the hips and forearm are osteoporotic. I'm rather dreading the rheumatology appt as I'm sure they's want me on Prolia or something similar.
I don't have a consultant yet for the kidney stones; I suppose that will come after the ultra sound . In the meantime I'll take your advice and take only Vit D.
I had my first kidney stone when I was about 17 & currently have a lot in both kidneys so know a little bit about them. Not all kidney stones are made of calcium, so if you do manage to catch one, see if you can get it tested; you will then know what food to avoid. An easy way of doing your straining is to use something like an icecream container, & strain from that.
Hi Maria. Sorry to hear your news. In respect of checking for adrenal insufficiency, my Rhuemy said our local hospital will only undertake test for those on or below 3mgs. He said policy differs from hospital to hospital. Unfortunately our three hospital options all belong to the same trust so no doubt have the same policy. Hope they get to the bottom of the cause and management of your pain speedily.
P.s. both my doctor and Rheumy have given up with blood tests on me as I constantly have infections which skew inflammation levels. Hopefully your results are infection related rather than PMR flare. Not that you want either!
My Endocrinologist has had me tested again today now I’m at 1/0.75mg, even though I’m feeling better and my results were fair 18 months ago. So, why can’t you possibly have problems at 2.5mg?? Can’t see their reasoning.
Sorry you’re having to do ‘home gold panning’ but it could possibly upset the inflammatory markers if there is grumbling inflammation due to the stones.
Discovering I don't have the aim either- have resorted to a sieve which gives me a wider field. I've so far been lucky with the pain. Before I knew what it was, I did have quite a lot of discomfort on Monday night but fingers crossed only a few twinges since. Perhaps this too HAS passed! Hope so, as I have a couple of hours on a bus today.
I too developed kidney stones having been prescribed A A and Cal D 3 two attacks three weeks apart. Not much fun being in the back of an ambulance in the early hours of the morning on intravenous morphine. Stopped taking above calcium supplements and never had a problem since, I now take vit D and vit K2, neither my GP or the urologist picked up that the calcium was the cause of the kidney stones it was my nursing training that linked the two.
Kinda new here. Just would like to know if any of you have had trouble with Vit C. I took Vit C 1000mg for a few days and had very unusual pains felt like UTI kinda pain. Has anyone had trouble with kidney stones with Vit c ?
I have not been diagnosed with PMR or GCA but my ESR is 64. CRP 6.8 for a while now couple years. so might be something like that. They keep saying you’ve got inflammation but I have not got any other pains etc. Not sure what to make of it. I have not had an official diagnoses of any kind. So I thought I’d ask about it here.
I'm sorry - but any expertise here is with PMR and GCA so we may not have experience that could answer your question. Too much vit C is excreted via the kidneys so could well lead to bladder discomfort.
Your doctor is hoping you catch a stone so it can be analyzed to see what type it is. Here is information on various types, and what kinds of foods and drinks can assist in stone making:
Unlisted here is the possibility of stone making due to undiagnosed and untreated UTIs.
Regardless of the type, drop the following from your intake immediately: coffee, tea, cola, chocolate, salt and any other caffeine sources. Drink at least 2 liters of plain water (not mineral water or sparkling water) every day until you get a stone analysis. I know, that's a lot, but it will help the stone(s) to pass and prevent the formation of new ones, an outcome truly to be desired. You might find a small saucepan with a handle easier to manage collection (drop your drawers all the way to your ankles or take them off). Strain your sample through a clean coffee filter. If you're not sure whether you see something, submit it anyway. Stones can look a lot more like grains of pepper than pearls, though they can feel like basketballs.
Pass on the organ meats, sausage and liver pate, unnecessary carbs, seafood, and nuts, too. NO processed or canned foods. You can add things back after you know what kind of stones you make. No need to feed the beast right now. A few weeks of skipping your calcium and Vitamin C supplements until you know what you're dealing with won't hurt anything.
Last time around, about 10 years ago now, I had a large stone that was not going to budge, which was dissolved by an ultrasound procedure. I had no symptoms at all of any kind - felt just dandy - until I had a temperature of 105 degrees farenheit, passed out, was hauled off the Staten Island Ferry and put in an ambulance to NYU Medical Center. Fastest trip to midtown Manhattan ever! Yes, I had a kidney infection caused by the blockage of the stone. Thankfully, all resolved after a few days of antibiotics and dissolving the stone with no discernible damage.
It was a oxalate stone, so no more spinach salads for me (boo hoo). Also cut coffee to 1 cup a day, and now drink no more than 1 cup of tea. Coke is a treat I allow myself once in a very great while as is a gin or vodka and tonic. At least a liter of water every day. NYC has really good drinking water, but I installed filters on my faucets, carry a water bottle with a filter, and keep a pitcher with a filter in the office fridge. That keeps a lot of plastic out of the ocean. Otherwise, I eat the rainbow - everything in moderation - as Grandma taught me.
Not everyone has a great deal of pain depending on the size and shape of the stone, but go the the Emergency Room right away if your pain level is anything higher than a bit of discomfort, or if you find blood in your urine. Take your temperature every couple of hours, too, to monitor for infection.
With luck, this will go rather easily for you, but don't let anyone talk you into not getting the proper imaging of BOTH kidneys and your urinary tract and bladder, and a proper and thorough urinalysis. Just cause you feel better does not mean you're done.
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