red cells low

[welshlady52]

Hi bit worried as i saw consultant yesterday and he said my red cell count is a bit low...i am taking an iron tablet every day and have been for a long time as i have a history of aneamia....anyone ever had this problem with CLL? Thank you

[Cammie]

Welshlady

This is common with cll as the bone marrow gets crowded out with immature lymphocytes it is unable to manufacture enough red cells.

It depends upon what cells are affected. If it's platelets then there is a need to just keep an eye out for example mine have always hovered around 100 to 140 throughout my 16 years experience with cll even now after second treatment they are still low.

Nothing really to worry about unless they drop to under 80 when the risk of not clotting will be taken into consideration.

When you next see your med team get them to clarify which cells are affected and to put your mind at rest ask what this means for your condition.

Don't worry !

Geoff

[welshlady52 in reply to Cammie]

Thank you...its not my platelets,its my iron level that is low...

[Cammie in reply to welshlady52]

In that case it's red cells caused by an iron difficiency?

Have you suffered with AIHA? Or Iron deficient anemia?

This causes insufficient heamoglobin and can cause fatigue and shortness of breath etc.

My comments above still stand and unless the cells fall dramatically taking extra care with diet as advised will assist.

Hope you feel better soon but don't worry

Geoff

[welshlady52 in reply to Cammie]

What is AIHA? Yes i have been aneamic for years and i take 1 iron tablet a day....yes i have been feeling so tired recently. Thank you so much for replying....

Linda

[AussieNeil Partner Administrator]

It's a common problem with CLL, because not only does our CLL eventually crowd out our red blood cell making factory - our bone marrow, but it is also common in the later stages to have a gradually enlarging spleen, which filters out more and more red blood cells before they need to be withdrawn from service'. Then there's commonly a degree of auto-immune haemolytic anaemia (AIHA) with CLL, where our CLL disrupted immune systems tends to create antibodies that attack our red blood cells (or our platelets, when the condition is called Immune Thrombocytopenic Purpura (ITP)).

The best measure of the degree of your anaemia is your haemoglobin result. If your consultant hasn't ordered any additional tests, they probably aren't too worried. If you are finding you are becoming easily puffed, you can ask your GP to do a range of tests to check if other factors are impacting your body's energy levels and ability to make red blood cells, namely Thyroid Function, Iron Studies/Ferritin and vitamin B12/folate. (Your body needs more than just a good supply of iron to make red blood cells.)

I had these tests done 18 months ago and they came up OK, so my anaemia is due to my CLL. My CLL specialist has just requested I do these again. It's a simple fasting blood test.

Neil

[welshlady52 in reply to AussieNeil]

Thank you....i was a bit concerned as i am already taking an iron tablet every day...and have been for a long time. Waiting for my gp to ring me now in regards to taking an extra iron tab

[AussieNeil Partner Administrator in reply to welshlady52]

Per my reply, you may need something other than additional iron. It could be that you lack folate or B12 (and sometimes we need to have injections of B12 as we can't absorp it from tablets) so that your body can make use of the iron you are already taking...

Neil

[welshlady52 in reply to AussieNeil]

Thank you. He said not to take extra iron tablet...just try and eat more iron rich foods....such a worry isnt it

[Hidden]

Your consultant will look at the trend in your Hb results. Sadly falling Hb is a signal to start treatment. Early in my CLL journey I asked about taking iron tablets and the consultant said no point. But I included iron rich foods in my diet anyway. No amount of supplements will stop the red cells being crowded out as CLL progresses. Now on round 4 of FCR and Hb has gone from 94 (the signal to start treatment) to 122. FCR has worked well and my diet is very much iron inclusive but no tablets. Good job I enjoy liver and bacon casserole!

[welshlady52 in reply to Hidden]

He never said anything about needing treatment at all.....everything else is fine...no swollen lymph nodes anywhere...no swollen spleen....surely i wouldnt need treatment yet???

[Hidden in reply to welshlady52]

Didn't mean to spook you. You don't need to have another appointment for 3 months, good. The consultant is looking for trends over time. So is your Hb falling regularly? I had no other reason to have FCR other than a year of falling Hb to become regularly under 10. This was a sign that the bone marrow was becoming overcrowded (I think) and action was needed. It was a shock as I thought I needed lumps and bumps etc before treatment. Don't panic. Have an iron rich natural diet and get on with life.

[welshlady52 in reply to Hidden]

No this is the first time he has ever mentioned it

[Hidden in reply to welshlady52]

What was your Hb?

[welshlady52 in reply to Hidden]

He didnt tell me

[Hidden in reply to welshlady52]

So no panic or worry needed now but a question for your consultant next time. Your Hb needs to be above 10 or 100. Hb can go up as well. Remember trends can take a long time. My Hb went down over 18 months. Time to stop worrying and get on with life.

[Quarry]

You need to understand why they are low, so I hope your consultant will tell you. There could be many reasons, but it is important to know why.

There is mention of AIHA in the replies above. This is can be caused by CLL (fairly rare, I think 1 in 10) and is where you spleen sets about destroying your (healthy) red blood cells. Result is HB is lowered, billi is up, spleen is swollen (though I never felt that) and reticulocytes are up. Reticulocytes are baby red blood cells (up because you start manufacturing more in the bone marrow to compensate for the destruction) and measuring them is not part of a standard blood test. If you don't fully compensate for the destruction, red cell levels will obviously drop. In the small chance it is AIHA, you need good monitoring and then if it gets out of control, treatment for the AIHA.

So you need to be persistent in asking what is causing the low red cell count. Hope you get answers!

[welshlady52 in reply to Quarry]

Not seeing him for 3 months now....bit confused tbh...someone just said its a sign i need treatment....ive no swollen lymph nodes anywhere nor spleen. What is AIHA?

[Quarry in reply to welshlady52]

If your consultant does not want to see you for 3 months, you don't need treatment (for CLL nor (in the unlikely case you have it) AIHA)! In your post, you mentioned your red cells a only 'a bit low' - they do go up and down and you need to look at trends over time, not an individual reading. Your consultant is obviously not worried (if they were, you would be having blood tests monthly or even weekly).

It is easy to get carried away with CLL and believe things are out of control and us people on the end of a computer line do not have either medical skills nor full access to your blood numbers/symptoms. I would trust your consultant, they will know much more than us! All of us are different, we can only say what happened to us (in our individual case)

For information, AIHA is Auto Immune Haemolytic Anaemia - it is a CLL complication, but less than 1 in 10 get it. Your CLL cells trick the spleen into thinking your red blood cells are the enemy (or a disease) and so it starts destroying them.

You say you have a history of anaemia....it might be nothing to do with CLL. If you feel breathless on exercise (say walking up stairs) or v tired, you can always see your GP and get bloods done through them. They can treat non-CLL causes.

Hope all goes well

[welshlady52 in reply to Quarry]

Thank you so much for replying and for caring..means such a lot

[AussieNeil Partner Administrator in reply to welshlady52]

3 months is good! AIHA or Auto-Immune Haemolytic Anaemia is when your body's immune system attacks parts of the body (Auto-Immune) and the parts it attacks are the red blood cells (Haemolytic) causing Anaemia. One trigger for starting treatment is if your haemoglobin falls permanently below 10, but that may not happen to you - your body may be able to make sufficient extra red blood cells to keep it above that. Importantly, your specialist is aware of your anaemia, is keeping an eye on it and obviously isn't too concerned if your next appointment is 3 months away.

Neil

[welshlady52]

Thank you so much Neil..it means such a lot when people take the time to reply and to care x