CKD3B and reduce haemaglobin

Thank you so much for your prompt reply Lyn.  Yes I do have a good diet.  I also have wheatgerm every morning which is high in folic acid.  Also have plenty of watercress.  Interesting about the B12 as well.  I guess, I'll know more when I receive the pre-arranged call from the GP on Monday.  Meanwhile, your reply is reassuring.

Hi my daughter was put first on iron supplements but then epogen shots because the kidneys stopped producing red blood cells.

aidi, thank you for your interesting reply.  I haven't heard of epogen shots - think the kidneys are such a complicated organ, and I've only got the one anyway!  I do hope your daughter is doing well on the epogen.

Hello,

I think that you only get offered EPO when your blood count falls quite low and  your GFR also.  You could look at the NICE Guidelines which act as a protoocol for doctors.

Will do.  Thanks again Lyn.

Thanks for the information, Helen.  My red cell count is 3.72 and checking online normal range appears to be 4.2 to 5.4, so it does look like an iron deficiency.  The receptionist said she didn't understand enough about reading the results over the phone to help any further.  So I will learn more tomorrow hopefully when a GP has arranged to ring me..

Good to hear you're on an even keel at the moment - hope it stays that way.

Hello,

Hopefully you can get some iron tablets and they will help, they take about two weeks to feel any benefit but then you should feel better and if not there is plenty more to be done.  Good luck I hope you get it sorted.  I hope I can stay like this until I have my transplant too, shouldn't be shortlt now so fingers crossed.  Take care of you x

Hello,

How did your appointment at the doctor's go?

Lyn

Thank you Lyn and Helen for your posts.  It seems there are a few abnormal results but the GP said there has been a slight improvement in the HB since the previous test a month before so seems happy to leave it for now.  Has given me another blood test form to get ESR and CRP inflammatory markers checked to rule out return of an auto immune condition so it seems the cretinine/urea at least will be re-checked then.  I won't rush to do it but give it a bit of space to allow for any improvement - fingers crossed.

Serum creatinine which is 117nmol/L (normal range 49-90)

Serum urea which is 11.4nmol/L (normal range 2.50-7.80)

eGFR - 40

Haemoglobin is 112 g/L (normal 115-165 g/L)

Haematocrit is 0.36 ratio (normal 0.37-0.47 ratio)

​He mentioned potassium salts are low - not sure which one of those above is relevant.

​As I said, he mentioned that the HB has slightly improved from the previous test at the end of December, so he seemed happy with that?

I have recently been prescribed Doxazosin for high blood pressure alongside my usual Losartan, so I'm wondering whether it is that which has caused a rise in the creatinine and urea in particular, as a previous BP pill some time ago caused a rise in creatinine then.

​Good to hear from you both - good to talk, as they say.  Many thanks and good luck to both of you as well.

 

Hello,

That sounds promising.  My own HB is currently 10.4 though my iron store (Ferritin) is slightly too high  (should not be over 500 in patients with CKD).

I am hoping that taking ferric acid and B12 will provide what is needed for my red blood count to improve again.  It is good that you don't need to take iron tablets yet.  I have found that they are reasonably well tolerated though they do tend to clog you up a bit.  I eat lots of fruit to combat that but that's OK.  I feel pretty well in myself although my GFR is only 27.  I hope you will, too.

 

Thanks Lyn - long may you continue to feel "pretty well".

​What bugs me a little is that no-one mentioned there was a problem with my bloods in the previous blood test, yet now the GP has told me that this latest test has shown a slight improvement!

Hello,

I find that I have to monitor my own blood tests.  I go to the renal unit every six months and they give me the forms to take in to get my bllod tests done every three months at the hospital. When I went for the last appointment with my GP, she looked up my hosptal records on the computer.  When they come up on the screen, there is a button the renal doctor has to press to say that the tests have been viewed and my interim ones were not looked at at all because the button had not been pressed.  I'm on patiet view which enables you to see most results but unfortunately, nor B12 or folic acid so I did not know that mine had been out of range for 6 months.  I think that you could get yourself put on Patient view if you ask your doctor.  It shows all the usual blood count measures,  haemoglobin,haemocrit, MCHC, platelets, white bllod cells etc and also Iron, Ferritin, transferrin and transferrin saturation, and there are buttons you can press to show you what each measure is and why it is important.  You can look at graphs of all the measures to show whether you are improving etc.  It is really very useful.

Best wishes.

Lots of helpful advice there Lyn, thank you - I will check out Patient View.

Hello,

Low potassium is unusual for us kidney people it usually goes the other way.  There is no reading for potassium there, ok is around 4 but too low is as dangerous as too high.  I wouldn't reach for the bananas yet but jacket spuds and steam your veg will help it rise just don't go overboard with too much posassium rich food in one day limit it to one or two portions and see how you get on if you are due to be re tested shortly.  I do hope you get your BP meds sorted I know you have quite a struggle finding something that works but also suits.  Hope you feel better soon x

Helen, sorry, I omitted my serum sodium results from the list.  Have just spotted it on the list following your reply and also having checked my new blood test form and find that GP has written "Na 129 - monitor".  Didn't have a clue what Na was so have looked it up and found it is low potassium salts - it should be between 136 and 145 having checked online.  Low potassium is described as hyponatremia and can be caused by underactive adrenal glands, many BP medications and kidney disease among others.  The latter is obviously a likely cause, as is BP treatment, but underactive adrenal glands is also a possibility since 5 years of steroid treatment a few years ago could have taken its toll - my ESR and CRP inflammatory markers are to be checked on the next blood test and the results of that test should proide an answer one way or the other.  So it sounds as though bananas and jacket spuds are the way to go before my next test.  Thanks Helen for your support, especially kind when you have more than enough going on in your life at the moment. 

No problem Mrs O I think we help each other out as we all have different experience I think you do terribly well, keep us posted x

Hello Helen,

I think it is really helpful to share experiences too. Clearly there are differences in treatment around the country too.  I have just started to take folic acid and have just had a really bad reaction- although this is very unusual appartently.  My doctor has changed the pills to a liquid form but I still have the same problem with it.  I'm in a bit of a bind- my folic acid count has just been found to be very low - they have only just started to measure these two in my area-so I need to improve it and I also need to take Vitamin B12 but my GP says she can't prescribe it until my folic acid level is better.  What to do?  I eat a healthy diet so it seems it is an absorption problem. I am going to try splitting the dose in two today to see if that is any better.

Hello,

Its worth a try to split the dose, when I had to take amlodopine I couldn't take that all in one go it sent me loopy but was ok in two lots through out the day.  Yes I agree treatment is quite different, there was a lady that posted on here asking when she would start dialysis as she had a GFR of 24% and was told that it would happen at 20% and she would also be put on the list for a donor at this point.  We both live in Wales me in the north her in the south so the same country and I waited until I was 15% to go on the list and 9% before I started dialysis. No one is wrong its just things are done differently and a lot comes down to cost too sadly.  I think if you don't absorb it no matter how much you eat it wouldn't make any difference, I am the same with protien leakage and no matter how much I eat of it it wouldn't replance the vast amounts lost.  What are we like eh. I hope you get your folic acid sorted if you are having liquid for all the better as you can split it a number of times if need be as long as you get the whole dose in the day then you may be able to have your vit B then you will feel better.  I have been lucky and only needed two iron infusions (tablets didn't do it) and EPO for a little while I only need on BP tablet and vit D this is what I can't seem so keep hold of.  Have appointment tomorrow to see how that and the rest of my bloods are so fingers crossed I will stay ok until my bestie hands over one of her kidneys shortly.  I still get tired and we are going through massive changes at work at the moment and the occy health have said I shouldnt sit in a training room for 5 weeks as I will go to sleep but my work are very good and have listened to my suggestions to get round it so I will have a go.  I know I am very lucky to still be able to work but I have excellent family and friends in work who will tell me to go away if they think I look like I am struggling and I have support of my bosses too and they listen to me.  It also allows me to teach my children that you don't just have time off school/college/work for daft reasons.  Lovely to speak to you Lyn I would love to here how you get on. x

Hello Helen,

You have so much more to contend with than I do.  It's good to see how positive you are and how well you are coping.  I'm glad that you have such good support from your family and friends and can keep working. I am retired now but worked until I was 65.  Luckily I had a job that was very flexible.  I too am lucky to have a friends and a husband who supports me.  I also have a grown up daughter who lives just round the corner with her husband and two young children.  We help each other.  I look after her  18 month old daughter, Molly, while she does a distance MSc in Ecology from Edinburgh and she is always available to help if we need it.  Her son, Harry has just started school at 4.

Your work mates and bosses sound very understanding.  What job do you do?

I do hope that you can get your transplant soon and that all goes well.

Keep in touch,

 

Lyn,

We all have our own struggles.  My youngest is 5 and oldest is nearly 18, I work in Civil service and we have our own business so I have a lot to do with that.  Its good to keep as busy as possible however I do got to bed very early.  I am glad you also have a good support network it is important.  My mum was told she was too old to be a doner and my brother is insulin dependent so he couldn't do it and I lost my Dad a few years ago hence the friends stepping in.  take care x

HI, my gfr has gone up from 47 to 57 but my potassium is 3.5. Once it was 2.5 and i had k tablets but nothing I do brings it up??