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:
Albumin Low? Celiac disease = malnutrition.
Migraines usually resolve on a gluten free diet if you have celiac disease! 
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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I understand that kidney disease can cause anemia by not producing enough blood cells. (I have Thalassemia which means that my blood cells are too tiny (genetic) and it causes anemia, but I also had iron-deficiency anemia caused by malabsorption from celiac disease. I think you should ask your doctors why you are iron deficient.
It only takes one positive on the celiac panel to move forward to an endoscopy. I personally tested positive on the DGP IgA which is not common, yet I had severe intestinal damage. My only symptom? Anemia. I was actually just lucky that I saw a GI for a routine colonoscopy cancer screening. He spotted my life-long issues with iron-deficiency anemia. Other doctors blamed my Thalassemia for my low hemoglobin.
Learn more about celiac testing from this algorithm:
https://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf
https://www.questdiagnostics.com/dms/Documents/Other/celiac/celiac-gluten-diagnostics.pdf
http://www.uchospitals.edu/pdf/uch_007935.pdf
I am passionate about celiac disease. You stated that you had one positive on the celiac panel. Your doctor was woefully mis-informed that you needed the entire panel to be positive. Researchers know that genetically about 1 in 125 people have celiac disease. Only 20% are actually diagnosed. They also know that there is possibly a genetic link between TD1, Hashimoto’s and Celiac Disease (or at least these are most commonly linked). By addressing celiac disease (obtaining a diagnosis or ruling it out) might help resolve your kidney issues. Celiac disease is systemic. Inflammation can impact the entire body.
I wish you well!
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There is a motto in medicine: When you hear hoof beats, look for horses, not zebras. The meaning is clear: when you are looking for the likely cause of any condition, look for what is most likely and most common as the cause. For a patient with declining renal function (as measured by elevated creatinine and decreasing GFR), the anemia is clearly caused by renal disease. Patients with renal disease can present with catastrophically low hemoglobin levels, and they often need an initial transfusion, and after that a maintenance dose of erythropoietin. At your typical dialysis unit, all the patients will be taking EPO, which is given intravenously through the dialysis machine.
I agree with others that it is never too early to start looking for kidney donors, since the selection process, which involves blood typing, HLA group testing, cross-matching (to check for pre-formed antibodies), and a general exam to determine that the patient is medically fit to be a donor, especially with respect to overall renal health, is extremely rigorous, so you will lose a lot of willing donors in the screening.
Ethical committees will also strain to find some reason to oppose the transplant. I have even seen a patient who was 18 years old be refused a place on the transplant list because the ethical committee deemed her ‘too immature’ to handle I transplant, which made me furious, since I can’t see how anyone can be too immature to have their life saved.
But you seem to be worrying more than you should, since stage 3 renal disease is not a medical emergency. You still have many years left before having to start dialysis, if your decline in renal function goes at the rate it normally does in diabetic nephropathy. With a renal diet, proper management of hemoglobin levels, and captopril class anti-hypertensives, you can draw out the process of decline. Some promising research into anti-inflammatory drugs also suggests that there could be medications developed soon which will further slow the decline in renal function. You also don’t give an indication of your age, but far more people have stage 3 renal disease than will ever wind up on dialysis, since they will die of old age (renal function naturally declines with age) before progressing far enough in their diabetic nephropathy to require it.
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Very nice post.
Captain: You may want to visit the ‘I Hate Dialysis’ website, which is the world’s largest kidney disease website and has a comments section for patients you are in the pre-dialysis stage.
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