Struggling with Diabetic Stage 3 CKD- Some help needed


Hiya! I thought the same thing- Maybe it’s my BP medication that’s making the swelling worse? However I took myself off my BP med (I am on a very low dose because my BP raises slightly when I’m sleeping) just to see if that might be the cause, but it didn’t seem to help at all. I’ve completely thought about getting the daith piercings, which is something I might revisit. I just have… wow, I have a lot of piercings already so I’ll probably pop a few out just so I don’t scare anyone with new ones haha. Do they work for you?


I was tested years ago for celiac, and had one positive marker, but absolutely no symptoms at the time. (I believe I was tested because I had an issue with my liver enzymes randomly elevating. Strange event, they went back to normal after a few weeks, never had any symptoms, never happened again.) This IS something I brought up to my nephrologist, due to my lack of ability to absorb iron, and I’m going to talk to my GP about being tested for it again. Surprise, my nephrologist wasn’t any help in that area, at all. She said “Oh, I don’t do celiac.” So… to another doctor I go about that. This was GREAT that you brought it up, though, because I completely forgot that I had one positive marker for it a long time ago, and I had no idea that you could develop it later on. (I suppose you can develop anything later on…)


They work soooo so good for me. I haven’t had a migraine Since I got them.
The change of medicine helped a lot with my swelling but the thing that
keeps it down the most is the torsemide. It’s a diaretic so it just flushes
all that e tea water out. I take 2 doses a day and it’s made a world of


Hey Captain, you will feel better with the EPO shots and find you have more energy, though you have to keep in mind that it works only gradually, so don’t expect any significant results for a few weeks. Some patients complain about the sting when they inject it, but diabetics at least have some familiarity with subcutaneous injections.


I’m going to look into getting them, then. I suffer quite badly from migraines! I take 40 of torsemide, but it doesn’t seem to do much at all for me. I’m hoping the new med does something to help with retaining albumin in my system, because that seems to be the main problem. I have very low albumin. I’m not sure why none of the medication I’ve been prescribed is working…


Hahaha every time I go for any kind of procedure that involves needles of the like, I get the nurse/doctor going “Are you ok?! Are you ok?!” and I usually just smile and remind them that I’m diabetic and I’ve been used to needles since I was 10! I’ll tell you what’s going to KILL me though, are those four hour sessions hooked up to an IV for the iron infusions. THAT’S going to drive me crazy! I’m almost ready to ask my doctor if I can just get the IM injections, because I can deal with the side effects and they wouldn’t bother me. I’ve heard that this is a better way to receive iron, though, and I’m completely looking forward to feeling better. It’s difficult to deal with problems, even small ones, when you just feel like crap all the time.


One positive is all that is needed to move forward with an endoscopy. I tested positive on only the DGP IgA on the celiac antibodies panel (even in follow-up testing), yet I had moderate to severe damage and NO GI symptoms — just decades of anemia! Celiacs can be asymptomatic! The other issue discovered was osteoporosis when I sustained vertebrae fractures doing NOTHING two months after my celiac diagnosis.

Because you have a higher risk, insist on the full celiac panel!

Here are the celiac antibodies tests:


Albumin Low? Celiac disease = malnutrition.

Migraines usually resolve on a gluten free diet if you have celiac disease! :blush:


Captain: The iron infusions won’t go on forever, and soon you can switch to taking iron tablets to help the EPO work.

If you don’t like sitting around for i.v. iron infusions for four hours, you may have trouble with dialysis, for which the normal schedule is one four-hour session three times a week, but most modern dialysis centers have a private tv at each patient station, or you can listen to music through a headphone, or read a book. Some people also sleep, especially since blood pressure drops because of the removal of fluid from the bloodstream during the procedure, and this will induce sleep.


I’ve tried a NUMBER of different diets for the migraines, that’s a whole struggle in and of itself. I tried Keto, gluten free, grain free, everything. The migraines, we determined, are caused by hormonal or environmental changes. I did have the endoscopy for the celiac test, I believe that’s where the positive marker came from. I’ll be talking to my PCP about it at the next visit to explore that avenue


Welp, the goal is NOT to get to a point where I need dialysis, even if that means a transplant. The iron infusion wasn’t to bad! I went in, and it turned out that it only took about an hour for the first dose. So… My doctor was off about that, too. Or misinformed. I’m not sure why she told me four hours. I had a strange reaction to it- the hand that the IV was in swelled up, but other than that, everything went fine.


When you say, “even if that means a transplant,” you sound as if you might not want that, when in fact, it’s the best possible treatment for diabetic renal disease, and is especially effective if the transplant is performed before end-stage renal disease. Kidney transplants were first performed in France and Austria in the first years of the twentieth century, and first performed successfully by Murray in the U.S. in 1954, so now they have become fairly routine. A renal transplant from a live donor will last about 15 years, and one from a deceased donor will last around 10 years, and most patients report that they can return to a normal life once they get one.

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