Very low Haemoglobin

[Peri5]

Hi everyone..not posted for a while..I'm dealing with a very low haemoglobin and would be grateful if anyone has had a similar experience and can share some thoughts.

I'm stage 5 Ckd..gfr 9-10..my HB has been declining.in the last month it's gone from 75 (lowest) to 80..I'm on EPO..micera 100 mg once a month and this doesn't seem to be having much effect..

The doctor has ordered more in depth tests like blood film etc..has anyone been through similar investigations..I am vegan and dont touch any animal products..could diet have an effect?

Iv had 2 iron infusions as well..

I'm quite worried about the outcome although I know this needs to be tackled..

Can any shed some light..?

Many thanks..

[Nistha_]

Hey dont worry its going to be okay. My hemoglobin was really low too. You should include beetroot in your diet. It helps increasing hemoglobin. My hemoglobin was back to normal in few weeks.

[Peri5 in reply to Nistha_]

Many thanks for your kind reply Nistha..I will certainly try beetroot..need to do something..quite worried..I'm glad your level has risen.appreciate your help..

[KidneyCoach NKF Ambassador in reply to Nistha_]

Beetroot is high in potassium so please use caution.

[Peri5 in reply to KidneyCoach]

Thank you KidneyCoach for letting me know..I'll include just little bit in salads etc..

My potassium does go up from time to time..will be careful..

[Jayhawker]

I have really low hemoglobin as well. Before they started treatment for me I was severely anemic with hemoglobin of 5.6 I well remember that! I was winded just going from lying to sitting up in bed. I could barely walk from my bed to the couch in the living room, not more than 20 feet from my bed. Once I managed to make it to my couch I would lie down again and just sleep. It was a struggle to get to the bathroom, etc.

Anyway, my nephrologist tried various treatment options as well. He ultimately decided to try a combination of Procrit injections and an iron medication called auryxia. I take 2010 MG of this medication three times a day with my meals. It keeps my hemoglobin close to 10.5. So, now I'm only mildly anemic and am definitely functional.

Your doctors will get this figured out. Just keep working with them.

Jayhawker

[steve680 in reply to Jayhawker]

My hemoglobin is down to 8, which is the lowest it's ever been. I'm starting iron infusions next week. My doctor said the iron has to be done first or else insurance won't pay for the EPO injections. I have noticed more rapid heartbeats than before, which I've read anemia can do. Basically, an HB of 8 is about half of normal. I'm sure I'll feel better once I start the EPO.

[Peri5 in reply to steve680]

Hope you feel better soon..

[TaffyTwoshoes27 in reply to steve680]

I was not told that about the "iron must be administered first before insurance will pay for EPO". I will ask my doctor (since the RenalN Nurse mentioned the EPO). She said my iron labs are fine. She wants me to talk to Neph b/c my hemoglobin dipped from 11.6 to 10.6 after being hospitalized with dehydration, low electrolytes and a first incidence of AFib. 10.0 - 11.0 is the acceptable range. I declined the treatment since I was still recouperating from hospital stay and I was put on a new medication in the hospital. I am not a big believer in making too many "tweeks" to meds all at once. The Renal Nurse also wanted to give me a flu vaccine. I turned that down too. I had the vaccine a couple weeks later.

I have wondered about taking the product "Super Beets". I am on PD, so am not quite as susceptible to overdoing potassium.

BTW: in a month after being discharged from the hospital, my hemoglobin went to 10.8, so I think the body just needs time to heal.

[Peri5 in reply to Jayhawker]

Thank you so much for your kind response..that's a really low haemoglobin you had..sounds like a difficult time..I dont have too many symptoms at the moment even though its low..i do get headaches from time to time..

Iv been taking micera for a while now..since last year..they started me on 50 mg every 2 weeks and then upped it to 100 a month..also venefor iron injections..the consultant expected some improvement but it's not really done the trick..they did mention epo resistance which is what worries me..dr has advised to increase to 120 mcg.my iron stores are well topped up ,folic acid and b12 all ok..so bit of a mystery.

The next step is an investigation,blood film,haemolysis assessment and reti count..also refering to hematology..

It's all a mystery at the moment..I'll be getting these tests done on monday..

I take immunosupresent Azathiprine..I'm thinking could this br effecting my bone marrow.been on it 30 years..will certainly keep everyone updated.. many thanks for writing back..

[Herkidney]

Procrit worked very well for me. Ask your nephrologist if Procrit would be an appropriate medication for you. It is a rather expensive medication, so hopefully your insurance company will cover it.

[Peri5 in reply to Herkidney]

Thanks for getting back to me..I'm living in UK..so I access NHS treatment..I will certainly check about the injection you've mentioned..iv heard its effective

[Bunkin]

Mine is low. My doctor prescribed Procrit but I’ve been waiting over a month for my insurance to ok it. Hopefully it will help if I ever get it!

[Peri5 in reply to Bunkin]

Hi Bunkin..how are you??long time we've been in touch..hope all is stable..I think low haemoglobin is common with us patients..i hope you get procrit so you feel the best you can..I was listed on transplant list is August but now been suspended until this is sorted..

[Bunkin in reply to Peri5]

They suspended you due to low hemoglobin?

[Peri5 in reply to Bunkin]

Yes..they apparently want to investigate the cause of the HB being so low..

[Bunkin in reply to Peri5]

That just seems crazy to me! I’m praying for you. I may be in the same boat then. I had no idea

[Peri5 in reply to Bunkin]

If your doctors can sort out your HB with epo injection and it rises you will be ok.it would be risky to go ahead with an op if the level was too low..they need to be 100 percent sure before going ahead....praying for you too..

[Bunkin in reply to Peri5]

Thank you!

[rabbit01]

I have the EPO injection once every two weeks. Been on it for 3 months and only recently has the haemoglobin gone up. I hope yours does too.

[Peri5 in reply to rabbit01]

Hi rabbit01..good to hear from you..hope all is well your side.oh ok you've been on epo recently..how low did your HB go?iv been on it a while but it doesn't seemed to have worked..drs suspect some underlying cause..do you feel better with the injections?

[rabbit01 in reply to Peri5]

I can't say I feel any better. The numbers are gradually increasing.

[Peri5 in reply to rabbit01]

That's a good sign..will take some time to kick in..

[rabbit01 in reply to Peri5]

The haemoglobin went down to 80 at the lowest point but is currently 113.

[KidneyCoach NKF Ambassador]

Kidneys tell the bone marrow to make red blood cells. When kidneys fail the production of red blood cells is interrupted. Iron and red blood cells rely upon each other. Anemia is very common in CKD 5. You are among friends. I've taken venofer (IV iron) and EPO for 16 years adjusted per lab values. Then switched over to MIRCERA and venofer for the past 3 years. Hopefully your levels will even out and you'll be feeling more energetic soon. Hang in there. Blessings

[Peri5 in reply to KidneyCoach]

Many thanks KidneyCoach for your kind reply..appreciate you sharing your experience..I am currently on the same treatment that you have mentioned..micera and venofer..can ask what strength of micera did you take?my dr is planning to increase the dose to 120 mcg..also an aniema investigation,referral to haematolgy.. also planning to check for bleeding..colonoscopy.. and endoscopy..I dont have any symptoms.. I do get tired sometimes but nothing excessive..I'm on a drug Azathiprine for 30 years..for lupus..wondering if that has affected my bone marrow..I guess the tests will hopefully shed light on this..many thanks for your reply..I will do my best to stay positive.. best wishes

[Peri5]

I'm glad your brother could have his surgery.. yes it seems kidney patients all have this issue..

[KidneyCoach NKF Ambassador]

I don't know specific values off hand only that it's classed as a high potassium food. In those with CKD stage 4-5 potassium must be controlled as kidneys cannot regulate it well. Too much potassium in the blood can cause heart to stop so controlling levels is key.

[KidneyCoach NKF Ambassador]

The cause of anemia in kidney failure patients IS known. The kidneys produce a hormone called erythropoeitin. This hormone stimulates production of red blood cells from bone marrow. When kidneys fail the hormone is lessened or missing so red blood cells are not made causing anemia. This also impacts the longevity of red blood cells.

Medications such as synthetic hormone like EPOGEN, PROCRIT, ARANESP, MIRCERA are all drugs that mimic the hormone in red blood cell production. Prior to these drugs blood transfusions were the only treatments available for low HGB.

I've been taking the injections every 2 weeks to 3X week for 19 years. They do work for most people.

Average HGB for normal functioning kidneys female my age group is 12-15. For men I believe it is ABOUT 14-17.

Empower yourself through education. Check out kidneyschool.org Blessings

[TaffyTwoshoes27]

I do not believe "all" kidney patients have low hemoglobin. Mine has never been low since finally being diagnosed with CKD. It "may" have been low before I was diagnosed with CKD because I was very sick, did not know what was wrong and was anemic. It hasn't been low(in fact, it had been as high as 13.7 this year), so I would not say ALL kidney patients have low hemoglobin.

[Peri5 in reply to TaffyTwoshoes27]

It may not be the case for everyone but its seems to be a majority..once the gfr declines its unable to produce ethroptein hence patients need top ups with epo injections..I hope your HB stays at a good level.

[TaffyTwoshoes27 in reply to Peri5]

Thank you. Lately, my KT/V has been declining. That has been a source of some stress to me. I noticed that I was urinating less volume as well as less frequently. That has something to do with the Kt/V declining, but I don't know why that came on so suddenly. I learned that there was a medication I was taking from the gastroenterologist that had a side effect of producing less urine. I am not on that drug now (quit it in prep for transplant about 2 weeks ago), and I am eager to see if my urine output will increase. Since I am on dialysis (PD), my nephrologist says that GFR is not as much of an indicator as it was when I was in CKD.

[Carillon]

How do you feel with a GFR of 9-10? Are you functioning besides the effects of low hemoglobin? How long have you been at 9-10...

[Peri5]

Hi Carillion..to answer your question I am feeling ok at the moment....I do feel tired at times but not out of breath.still able to eat,walk up a hill etc....my gfr has been declining steadily since last year..I do urinate at night quite abit..I guess that is the most noticable problem.my dr wants me to start pd but I have not yet had the surgery.

[Hidden]

To answer your question I've included an article from the NKF. In short, it has to do with the prevalence of a specific gene. Read the article for more detailed information.

kidney.org/atoz/content/Afr...