Struggling with Diabetic Stage 3 CKD- Some help needed

Failing kidneys will cause your blood pressure to rise, but increased blood pressure will also promote the progression of kidney failure, so it is difficult to distinguish cause from effect. But if your blood pressure problems clearly began before renal problems were detectable, blood pressure could have been a cause rather than an effect.

Anemia is a classic symptom of declining renal function, since in addition to all the many other things they do, kidneys also produce erythropoietin, which supports normal hemoglobin levels. You should be taking one of the many forms of synthetic erythropoietin to boost your hemoglobin levels, though correction to normal values is dangerous, so expect your doctor to permit a hemoglobin level of no more than around 110, rather than the normal 120 for women. (For men the normal values are around 140, so they are in an even worse situation with renal failure, since their anemia has to remain even more severely uncorrected.) You will have to take an iron pill in order for the synthetic erythropoietin to work.

Hello! I have been CKD for 4 years now in stage 3, pretty close to stage 4. I suffered from sever edema for the first 2 years and I couldn’t figure out why. It was one of the blood pressure medications I was on. I would suggest asking your doctor if you could switch things up to find the right combination that works. I currently take lisinopril, astorvatin, and a biiiggg dose of torsemide to keep the swelling at pay. Now instead of everything being painful and swollen I sometimes maybe get a little swelling in my ankles. I also dealt with migraines caused my medication. I got a daith piercing in both ears which is a pressure point known to help with migraines and it has cut all headaches down to maybe once a month. We could be twins on our diabetes journey to CKD so I hope this helps. I have had so many doctors just assume I knew what to do or what they were talking about and I learned fast that you HAVE to bluntly tell them you need a bigger explanation and you need a different plan of action. Good luck to you!

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Please tell me that you have been throughly screened for celiac disease. I only presented only with life-long anemia when I received my celiac disease diagnosis. Some 10% of TD1s can develop celiac disease at any time. It is systemic and like Lupus and many other autoimmune disorders, it can affect many organs beyond the gut.

Insist on a full celiac panel.

I spoke to my doctor, and FINALLY my anemia is being addressed. I’ll be going on an EPO as soon as I finish Iron infusions. Apparently, I’m extremely iron deficient, so once my iron is up, I’ll be getting Procrit to boost my hemoglobin. My nephrologist believes that the reason my kidney function has gone from bad to worse is because of the anemia. She also gave me a medication (forgot the name) that I’m to take half an hour before the torsemide. I’ve noticed a small amount of change. The Lisinopril has also been switched to Diovan, but I have small hopes that this is will not cause me headaches also, since it’s listed as a side effect. I have read that it works better along with Amlodopine, which I am also on, so I have some hope that it will help with the swelling issue.

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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…)

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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
difference.

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.

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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:

http://www.cureceliacdisease.org/screening/

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.

Honestly at this point, i would LOVE a transplant. This whole game of getting the crap scared out of me by doctors preaching imminent doom to me every time they see my numbers when they come back is utter crap. I think the stress and anxiety are what’s killing me!
However, after a rough weekend, I got my numbers back and they are doing worse again. I finished my iron infusions and am now going to move on to the procrit, and have an appointment with my doctor tomorrow. at this point, I don’t know if I should check myself into the hospital or not, because my kidney function is RAPIDLY declining. I’m going to see what my nephrologist wants to do when I see her tomorrow, she seems to think that once the anemia is fixed the kidney function will get better. I’m just not… sure what I should be doing at this point. Do I start asking the people that offered to give me kidneys to get themselves tested to see if they’re a match? Do I check into the hospital? Do I wait it out and see what the nephrologist wants me to do? I just have no idea and I’m so stressed, depressed, and full of anxiety.

I would consider there to be no downside to that approach. Potential upside.

Note - Ask the hospital for the testing procedure. My experience is the hospital will want to run the tests and may not accept results from outside labs. Discuss with the hospital first. There are many ways and many procedures. The procedure that counts is the procedure that your hospital has.

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I do not understand. Iron infusions can temporarily help to resolve iron-deficiency anemia, but what is the root cause of your anemia? You must have some severe blood loss, you are not absorbing iron or you are not consuming iron from dietary sources. You said you were positive for celiac disease, but you are not addressing it? You tried the gluten free diet, but you are eating gluten now? This could be the root cause of many of your current problems. Celiac disease can be asymptomatic. Please talk to your doctor and get to a GI. You deserve to find out the root cause of your issues. I can not believe your doctors can not look beyond their own specialties!

The root cause of my anemia is kidney disease. Kidneys produce EPO, which tells your body to produce blood cells. When your kidneys are damaged, they will not release the protein that tells your body to produce enough blood, so a synthetic EPO is needed. The synthetic EPO needs Iron in order to work, and I am a bit iron deficient. My doctor wanted to bump up my iron to make sure the EPO would work. I only had one positive marker for celiac, and I believe you have to have more than one marker to have a confirmed diagnosis.

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