Macrocytic

[orangecity41]

I have low RBC low Hemoglobin . Has anyone else have these conditions? I read that it could be associated with CKD. If so , what has the treatment been?

[newbie1956]

OC yes,

I've had low Hemoglobin & low Hematocrit along with CKD, for at least 2 years. My nephrologist ordered Procrit injections (easy, zero problems) twice a month, but only once a month now. My RBC has climbed to 10.6 but i think it's a little different for men. Lot's of info on Google, but why not ask your doctor about Procrit. 💉

Agape / Stay warm

[orangecity41 NKF Ambassador in reply to newbie1956]

I will ask about Procrit. My RBC is at 4.16.

[Bassetmommer NKF Ambassador]

Quite common. My hemoglobin before dialysis bounced from once 8.8 to 10.4. But for the most part, stayed around 9.8 to 10.1. After dialysis, which strips iron..... isn't that wonderful.... it went down to 9.3 then 9 then 8.8.

I tried OTC iron, did nothing. I ate good iron veggies and oatmeal.... nah, did not do much.

Before dialysis, I had an iron infusion this summer which brought it right up over 10. Now I take iron which is put right into the dialyzer when I am on. AND... I have to have an EPO shot. Love it. No wonder my attitude is bad on dialysis.

[Tuffcookie71 in reply to Bassetmommer]

Bassermommer. My boyfriend, age 78, is currently in the hospital. He is a hemodialysis patient. He had triple bypass surgery, at the end of Oct., and hasn’t been the same since. Currently, his hemoglobin count is down, so much, that he is requiring frequent transfusions. I have been reading about the EPO medication. Can you share more of your experience with it? Thanks, so much!

[eyeBRing in reply to Tuffcookie71]

I HAD EPO INJECTIONS SELF ADMINISTERED ONCE A WEEK FOR 10 WEEKS AND THEN TOLD TO STOP BECAUSE MY IRON LEVELS AND BLOOD COUNT WERE PERFECT. NO SIDE EFFECTS WITH THE FIFTEEN MIUTE IRON INFUSION WHICH I HAD BEFORE THE EPO AND EVERTHING WENT WELL/ HOPE THIS HELPS

[Bassetmommer NKF Ambassador in reply to Tuffcookie71]

"Epoetin injection is a man-made version of human erythropoietin (EPO). EPO is produced naturally in the body, mostly by the kidneys. It stimulates the bone marrow to produce red blood cells." Mayo Clinic

I had mine shot right into my arm. NO pain. And no side effects.

[Hidden in reply to Bassetmommer]

Which I believe is the Procrit that Newbie mentioned.

[Tuffcookie71 in reply to Bassetmommer]

Do you remember how long it takes to see results?

[Bassetmommer NKF Ambassador in reply to Tuffcookie71]

Results from EPO is measured in your lab. Did I feel any different..... hard to say because they also gave me 200 ml of iron in my dialysis. The iron made me feel wonky while it was being administer so they cut it back. Did it give me more energy.... maybe.

[orangecity41 NKF Ambassador in reply to Bassetmommer]

Thanks for info. I will discuss with my Doctor. I guess there is much to consider. I even had a previous Doctor say did not like the treatment for anemia? but was not that low then.

[Dana66CKD]

Yes, I have low RBC, hemoglobin/hematocrit levels since fall 2022.Also, intermittent low white blood count - monocytes, lymphocytes and intermittent bouts of lightheadedness. Now have Hematologist and she has checked Vit. B-12/Iron panel. Also checked epoetin level. I have Stage 2 ckd, which seems too soon for all these changes? But also have autoimmune disorder (secondary Sjogren's syndrome), so possibly related to all? IDK! It's alot to mull over with few definitive answers.

I started taking supplemental Iron once daily (324mg) but stopped till side effects disappeared, then resumed taking only 324mg/once per week.

Bouts of lightheadedness mostly gone, but need to recheck cbc/wbc. Last Epoietin level @ 87% Jan. 2023. Supplemental iron approved by Nephrologist.

Hope all or any of this info helps you in any way.🙏 Take care

[TableTennisMama in reply to Dana66CKD]

For lightheadedness I found a kelp tablet once a day got rid of it. I don’t know why that worked.

[orangecity41 NKF Ambassador in reply to TableTennisMama]

Might ask about the Kelp tablet.

[orangecity41 NKF Ambassador in reply to Dana66CKD]

Thanks, might ask about a Hematologist referral as I have the other conditions you mentioned. I did get a B12 shot and now taking vitamin b12.

[orangecity41 NKF Ambassador in reply to Dana66CKD]

I will discuss with my Doctor on what iron supplement is best for me.

[Dana66CKD in reply to orangecity41]

Yes. We all react differently, but many of our symptoms are similar, such as being more sensitive to cold. Anemia accounts for this too. Wouldn't it be great if science developed pill to fix, like they fixed patients with Hep C. Maybe someday...😍

[MoMo7251]

I have low RBC quite often. Got CKD stage 3 and VASE also known as watermelon stomach which leads to Iron Deficiency Anaemia. I take 324mg level Iron tablets once every day. Had camera down throat with plasma laser to cauterise bleeding it but still get blood loss. It’s a bit like wack a mole trying to find affected areas. In the meantime it’s treated by blood transfusion and a clotting medicine called Transanemic Acid 2 tablets a day. I may be on frequent transfusions for chronic anaemia in the future. It takes away the exhaustion and breathlessness/ wheezing straight away. I have blood tests every 3 months for RBC levels.

Edit

Forgot to add that I’m Diabetic 2 on Metformin and insulin (Lantus and Nova Rapide)

[Dana66CKD in reply to MoMo7251]

So sorry. That's alot to contend with.

[bbeba103]

Hi everyone,

I have been with amenia for awhile now just around July I believe was admitted after my visit with Neurologist since they ordered labs every time I have an appointment. Here I'm yet again with my hemoglobin levels dropping, I was admitted in October at the closes hospital near my house the hospital I attend for all my medical needs is about a 30 minute drive. So I had no choice to go to one closer to me at the time of being hospitalized my hemoglobin was 10 later I was told 11. I was on Elquis twice a day according to the main hospital I get treated they believe the Eqluis is behind this, yet can't say for certain. I was treated with a heparin drip in the icu to keep a close on me, put back on the Elquis although the main hospital I get treated decided to stop the Elquis. According to them I'm bleeding out yet can't find from where, after two colonoscopies one failed they still couldn't find anything. On the second colonoscopy to remove some polyps they needed to stop the procedure, because my blood pressed went low. The GI doctors also ordered test of my esophagus, and stomach to see if I was internally bleeding " nothing " they found I have a nodule, a hernia, stomach polyps due to the acid reflex, and Gerd " la grade c reflux esophagitis " which a year ago I didn't have. The oncologist that I see says all my other blood work is okay, yet it's a mysterious on why I'm so amenic. I was told that yes CKD can cause so amenia, but not this severe. In October I was 8.6 in hemoglobin after being discharged, again was checked a few weeks later my hemoglobin was 6.9, was told to stop taking the Eqluis til the team working on my case would discuss my case. A few days later was called to get back on the Eqluis from fear of me having a thrombosis, a day or two I get the call to stop the Elquis, and to start taking asprin 325 mg til my next colonoscopy that was due January 10th, yet was pushed back to February 2, because the Dr performing my procedure had to reschedule. About two weeks ago I was back in hospital for more labs my hemoglobin was 6.8 so it dropped again. I'm on iron pills, but at this point doesn't seem to work was told to continue doing what I'm doing after the New Year to go back to the hospital for more labs to see if my hemoglobin continues to drop. I can't get an iron transfusion, because around 2015 had one nearly killed me. Also my creatinine levels are high my egfr is 40, my potassium levels are also the highest they have been since being diagnosed with CKD. Also the protein in my urine is very high it's never been this high so I was put on a new medication " losartan 50 mg " to see if that helps to bring down the protein in my urine. To say I'm sad doesn't even describe this continoues roller-coaster of emotions. Sorry for such a lengthy rant.

Hope everyone has a great 2024

Stay blessed

[OldTownhammock in reply to bbeba103]

You came to the right place to rant🥰.

[bbeba103 in reply to OldTownhammock]

Thank you ♥️

[drmind in reply to bbeba103]

Sorry to hear about all the troubles. Praying and hoping a solution is found soon

[orangecity41 NKF Ambassador in reply to bbeba103]

Sorry to hear of your situation.

[drmind]

Sorry to hear about this condition. There is a lot of Google info on this and a few indicate a connection to CKD as well as diet. What's your medical people recommending.

[bbeba103 in reply to drmind]

Hi,

So far all they keep telling me I bleeding out from somewhere, that's why we are doing another colonoscopy one to remove the remaining polyps they couldn't remove. Also do another gastroenterology do a biopsy on the nodule found in my stomach, which they didn't do the first time. Also have me swallow a capsule that will record everything inside my body, why they did but unfortunately the capsule took awhile to travel from my stomach to my small and big intestines. They believe my stomach muscle was so weak from the anesthesia from repeating the procedures back to back. By the time capsule got to my small in intestine the capsule stopped recording it only can record for 8 hours. The issue later became that the capsule would get stuck in my small intestine. " luckily it traveled to my big intestine " not causing any issues. My Neurologist suggested if my hemoglobin gets any lower I need to go the hospital for a blood transfusion, I was told since I have kidney disease it's not surprising that my potassium is higher the usual to avoid eating anything that might make it get worse. Throughput this journey all I hear is you are " Stable " which I keep thinking so many things when they say I'm " Stable" they are hoping with the capsule test they are repeating in February they will find the source of my bleeding. I forgot to mention in my first comment that I don't have lupus or any auto ammune disease unless they missed it, but all the test so far come as negative. I did find our I have osteoarthritis the reason why a few months ago I had joint pain that come and go, also my hair has become thinner out of no where. So it's a waiting game til GI finish doing all these tests again. I'm also thinking of seeking a different opinion after they finish doing all these procedures.

Thank you for your reply

🙏

[drmind in reply to bbeba103]

Actually I'm wondering if so many colonophies are good? Good grief so much prep for these could be deleterious. I would get a 2nd opinion as soon as you can. Are you near a large medical facility where you can have that done?

[bbeba103 in reply to drmind]

Hi,

I was wondering the samething my first colonoscopy was done 2022 while I was admitted to the hospital by my Neurologist. My hemoglobin at the time was 5.4 so they figured while I was there to get it down. That was a fail I didn't start the preparation til 9pm waiting for the pharmacy to bring it up to my floor. By 4 am I couldn't tolerate it developed a fever do wasn't fully cleaned. Second colonoscopy was a few months ago 2023 also while admitted to the hospital again had the same issue so a second colonoscopy was ordered for the following day. They couldn't fully finish removing all of my polyps, because my blood pressure went low so they stopped it. Now I'm scheduled for 4th colonoscopy on February 2 if I don't get admitted before that if my hemoglobin has gotten any lower. I'll find out after the New Year after new labs are ordered. I go to UI Chicago, four years of this back, and forth yet they can't figure out exactly why I'm so amenic.

😞

[bestmom247 in reply to bbeba103]

Is there a Mayo Clinic near your? And by near, I mean mine is 4 hours away in Jacksonville, Florida and I make the trip when necessary. They find the answers and give it to you straight up. And in a manner that you can understand. Love my Mayo CLinic.

[bbeba103 in reply to bestmom247]

Hi,

I'm in Illinois glad you're able to go and get some good medical answers. ♥️

[bestmom24 in reply to bbeba103]

Check the internet for a Mayo Clinic near you. Worth the trip

[bbeba103 in reply to bestmom24]

Thank you

I live in Illinois

[bestmom247 in reply to bbeba103]

mayoclinic.org/chicago I don't know how far you are from Chicago, but this site is worth checking out.

[bbeba103 in reply to bestmom247]

Thank you I'm about 6 hrs away..

[bestmom247 in reply to bbeba103]

I am 4 hours from Jacksonville, but went through all of their hoops in 3 days overnight trip and was worth every peny to get on their Transplant list. BTW I am 70 years old. I though that would be too old, but it is not for them.

[bbeba103 in reply to bestmom247]

That's awesome that age wasn't a factor to be put on the transplant list.

🌹❤️

[orangecity41 NKF Ambassador in reply to bestmom247]

I am in Central FL near Daytona.

[bestmom24 in reply to orangecity41]

Halifax Hospital is another wonderful transplant center. Very knowledgeable, educational, and everyone there are just so kind.

[orangecity41 NKF Ambassador in reply to bestmom24]

Halifax is here in Daytona.

[orangecity41 NKF Ambassador in reply to drmind]

I have had many colonoscopies and polyps removed but since over 80 now do not get them unless a big need.

[orangecity41 NKF Ambassador in reply to drmind]

So far nothing recommended, just being watched . I have an upcoming appointment and will discuss. One previous Doctor even said did not like the treatment for it.

[WYOAnne NKF Ambassador in reply to orangecity41]

I think it is real common to have anemia with CKD. The two years before my transplant I had to give myself Procrit injections. After my transplant I did not need it anymore.

[Phillip46]

I have stage 4 kidney failure and have been getting procrit injections for about one year or more. When my hgb goes below 11, I get the injection at the hospital. Initially, I had the hgb tested biweekly, and the last 6-7 months, the nephrologist changed it to monthly. I don’t know why, but the injections , when needed, are done at my local hospital.

[orangecity41 NKF Ambassador in reply to Phillip46]

Right now my hgb is 13, so might not meet criteria for procrit. I am on medicare.

[Phillip46 in reply to orangecity41]

IDK, I am on Medicare too, but the nephrologist has orders for getting procrit if my hgb is below 11. I really don’t feel any difference when I get the shot or don’t get it.

[TableTennisMama in reply to Phillip46]

strangely they put my qualifying level at less than 10. So I end up feeling quite tired and without energy before I qualify to get a Procrit shot. I wish mine was at 11 like yours.

[Dana66CKD in reply to TableTennisMama]

Women's and men's H&H levels are different, so anemia or low count criteria depend on this. I'm stage 2 ckd but blood count fluctuates so much now. Had good results last visit with hematologist but count needs to be monitored routinely. I'm feeling better, no recent bouts lightheadedness so that's wonderful! Gives me a feeling of more independence ❤

[orangecity41 NKF Ambassador in reply to Dana66CKD]

I am going to check with Primary Doctor on referral to hematologist.

[5157]

I am stage 4,76 yrs young.I have anemia last reading was 9.6,hgb..My nephrologist will not give me procrit unless my hgb is 9 or below. I do not have an iron deficiency anemia. My red blood cells do not manufacture like they should. Per my nephrologist,anemia is part of having kidney disease.

[orangecity41 NKF Ambassador in reply to 5157]

I was diagnosed at stage 3b and 82 years young. I think my situation is similar in that my hgb is not near 9, and likely Medicare will not cover it at this level. Just have to do what I can to and make the best of it. Likely anemia is part of CKD. Thanks for sharing. Happy New Year!

[Darlenia]

Agree with what everyone has said here - the kidneys, besides removing toxins, also manufactures the hormone erythropoietin that stimulates red blood cell production. So over time as kidney function reduces and red blood cell production decreases most everyone winds up with iron deficiency, anemia, etc. (That's also why a lot of those with kidney issues complain of feeling cold.) To counter this, most nephrologists prescribe iron tablets, then move to iron shots or infusions, and finally to Epoetin injections. Epoetin mimics the normal hormone; hence, it stimulates the body's red blood cell production. It's a very expensive treatment. Thankfully, Medicare paid for it - paying the center $2K a couple of years ago. Of course, there are also other situations where the sudden appearance or acute nature of issues may mean there may be something else at play - internal bleeding, etc. And that needs to be taken serious and investigated too. Hang in there, Orangecity! I think you're in good hands at the moment and your issue will be addressed one way or another.

[orangecity41 NKF Ambassador in reply to Darlenia]

Thanks for sharing the information. My Doctor wants me to use Iron supplement 3 days a week. About feeling cold, I live in FL and like the warm weather. I do not feel too hot outside even if in 90's. Happy New Year!

[Darlenia in reply to orangecity41]

Happy New Year to you too, Orangecity! As long as the "sun shines and the rivers flow" , we have much to look forward in 2024! Blessings!