Anaemia or CLL? Time for re-referral?

[NavyDavy]

Surfacing after periscope depth for some time.

Well...... over the past 3 years my wife has suffered Covid, Shingles, breast cancer and a cardiac arrest in that order. Very traumatic, especially for a fitness ‘guru’.

She still ‘works out’ daily in the gym, or alternates with a 5-mile walk and is active despite the copious medication she has to take and SpO2 monitoring, etc. No ‘night sweats’, lymphadenopathy, weight loss, etc. Some tiredness as opposed to fatigue. She has been W & W for the past 14 years, but latest ‘bloods’ have taken an odd turn:

Year......................2019 2021 2022 2023

ALC.......................14.23 14.26 8.67 8.98

Platelets..............284 262 253 285

Neut Abs.............3.12 3.01 3.58 3.69

Haemoglobin....13 12.7 11.1 9.2

RBC........................3.98 3.89 3.59 3.33

The G.P. is now conducting further blood tests with regard to Anaemia and Iron Deficiency. No mention of CLL. Yet the ‘treatment trigger’ is there for the Haemoglobin, below the 10g/dl threshold.

I am of the opinion that she should be referred back to the Haematologist rather than aiming to correct the Haemoglobin level by treating for Anaemia.

Also, could this be a case of Autoimmune Haemolytic Anaemia as discussed in 'Livingwith67’s post a couple of months ago?

I’m interested in how the ALC has dropped significantly over the past 2 years and the increase in Neutrophil Abs, which I presume is very positive. Also the Platelets figure is the highest recorded since CLL was diagnosed 14 years ago.

I always produce graphs for each individual ‘blood’ figure and they all look really optimistic, however, the graph for the Haemoglobin is now very sinister-looking.

As ever, interested in the comments and much valued experience of our members.

Dave.

[HopeME]

Hi Dave:

I’m with you being concerned about anemia as a potential trigger for CLL treatment. I don’t know how many blood tests she has had but once that hemoglobin drops below 10 it’s definitely a red flag for a CLL patient. What country is she being treated in? I’ve been through this twice. The good news for your wife is that she has been in w & w for 14 years which likely means she is mutated. Once she has a treatment she will Likely go into to a long remission. Be pushy and get her to a CLL expert. GPs don’t see enough of this disease to understand it well.

Best,

Mark

[NavyDavy in reply to HopeME]

Thanks for that, Mark. Yes, this is the first blood test with the Haemoglobin under the 10. All other tests it's in normal range. We are in the UK and as you rightly say, GPs here are in the dark and ours is no exception. Another week until the telephone appointment with GP to discuss the matter. I'm going to try and contact the GP to remind them of the Haematologist's letter where it states "If the re-referral criteria is reached our team will undertake to review her promptly upon receipt of a referral letter from yourself (GP) without the need to unnecessarily invoke the 2 week wait pathway." It sounds as though the Haematologist wouldn't want to waste time.

Interesting about the mutation too. Was hoping that would be the case 🤞

Cheers again, Mark.

Dave.

[RosettaClapp in reply to HopeME]

Interested to hear you say that if you get 14 yrs W&W you're mutated.. I was 4yrs W&W and was told I was unmutated...

[NavyDavy in reply to RosettaClapp]

Hi Rosetta,

Did you have a test to see whether or not you were unmutated? We were told you would only have that test when treatment was imminent? This is in the UK......

[Newdawn Administrator]

Hi Dave,

Your wife has had a very tough time (and you along with her). Just a thought which may have no clinical relevance but it’s based on my husband’s experience after suffering a heart attack recently. He’s had a successful triple heart by-pass and is now on the usual ‘cocktail’ of meds. He doesn’t have CLL but the cardiac episode/surgery/meds caused his platelets to increase massively and his haemoglobin to plummet. Blood thinners in particular seem to be implicated. I wondered if your wife is on a similar cocktail of meds following her cardiac arrest?

It could of course be the natural progression of her CLL or indeed AIHA but the blood tests and her doctor’s investigations will reveal the cause.

Best wishes to you both and admiration for surviving such a traumatic time with positivity.

Newdawn

[NavyDavy in reply to Newdawn]

Thanks, Newdawn. I was sad to hear about your husband, but it's fortunate you had the sense not to wait an hour for the ambulance. Ours arrived within 10 mins of my call and she had the 'STEMI' in the back while en-route to hospital. Fortunately all 'wired up' so they got the heart going, but still caused damage. Any longer time frame and I wouldn't be posting here now.😪. I'm very pleased to hear his treatment was a success, despite the meds!

The cocktail of meds, both Cardiac and Breast cancer, has been a problem. She has had numerous contra-indications to contend with and we were also concerned how the CLL would be affected. The STEMI was exactly a year ago, a CBC 4 months later did register a drop in Haemoglobin from around 13 previously to 11. That is now 9.2. Platelets decreased slightly on that same CBC to 253 from a previous 262, but last week's CBC showed an increase to 285. So not sure how long it would take for cardiac meds to take effect on platelets? She started off on 3 different blood thinners, now down to 2. It's something certainly worth pursuing.

With regard to the AIHA, we may insist on a Coombs test just to settle that aspect one way or the other.

What is interesting is that since the STEMI her ALC, on 2 x CBCs and both 8 months apart, has dropped from around 14 to 8? Didn't know they could fluctuate that much.

Thanks for your best wishes, Newdawn. The very same to you and your husband. So yet another experience to notch up🥴

Dave.

[Poodle2]

Hi Dave, sorry to hear about all the troubles. Your wife has had a very long w&w period. You definitely need to get the doctor to run more tests to determine what's behind the anaemia. Definitely make sure your wife sees a CLL specialist.Once my Hb went below 100, there was no coming back from it without treating my CLL. I had two iron infusions that actually helped for about 4 weeks each time but it wasn't a long term solution. I did go another 9 months before I started treatment but it was very hard. I was getting sick with all sorts of infections and the fatigue became almost unbearable, it was really affecting me...so I hope they can determine the cause of the Hb dropping, it is quite likely to be caused by her CLL. It is good to know it does not seem to be affecting her that much yet.

All the best,

Petra

[NavyDavy in reply to Poodle2]

Hi Petra,

That is interesting re the iron infusions and their short term solution.

You mention a delay in starting treatment. Was this decision made irrespective of your low Hb reading or did your other ‘bloods’ have to ‘come into play’?

Fortunately my wife has not been affected by sickness or fatigue so far, although we are now very much aware. You've certainly had to struggle with fatigue and illness, etc.

The GP has arranged further tests, but around the anaemia aspect, although we were hoping for a full CBC just to confirm the previous result. A CLL specialist referral will be sought.

Hope you are still feeling okay and your numbers are good, Petra.

Kind regards,

Dave.

[Poodle2 in reply to NavyDavy]

As I already mentioned, I lasted 9 months. By then my lymphocyte count went up from in 70K to 140K, my neutrophils were 0, massive spleen, lots of nodes, repeated infections, very symptomatic. It all happened quite quickly though, I would say in a space of 6-8 weeks. It does not mean your wife's journey will be the same. My consultant was happy with my Hb staying stable at around 96-98, it was like that for about 6 months. At the time of the next dip (to 88), all the other problems (mentioned above)started to happening. It was clear to me treatment was coming. To be honest with you, by then - I couldn't wait to start.

All the best to your wife.

P.S. The low Hb is a bit of problem though as the treatments usually do knock it down even further and if you start with a low Hb, it will almost certainly dip even lower when you start treatment, I needed blood transfusions (like many others who started with similar numbers). It might not be a big deal to some but I would have preferred avoiding them completely, it comes with risks too...so just something to consider too.

[NavyDavy in reply to Poodle2]

Thanks again, Petra. That's quite a journey you've been on! Good information yet again, much appreciated.

[Jm954 Administrator]

Hi,

From what you've said I'm not at all sure that your wife's anaemia is due to her CLL which appears tom be very indolent. It is possible that she has a well compensated haemolytic anaemia where she is able to make red cells just about at the same rate but her Hb is showing a slow stay decline and that makes that less likely.

It will be important to know her MCV but from the results you've given I've calculated the MCH to be approx 27.7 which would not indicate marked iron or any other deficiency. Obviously it's important to find out why she's become anaemic and so she needs a battery of blood tests to check Iron, TIBC, Ferritin, B12, Folic acid, direct anti globulin test, LDH, LFTs, retic count and and thyroid function tests T3 and T4.

The combination of those results should give enough information to decide on the next steps in sorting it out. I hope it's something simple and easily corrected. Let us know

Jackie

[NavyDavy in reply to Jm954]

Hi Jackie,

Appreciate the direction your reply is highlighting.

It does seem odd that all the other 'bloods' are looking good, relatively speaking, yet the Hb has nose-dived.

The MCV measurement is within range at 90.4 and the MCH figure you quoted, Jackie, is spot on at 27.7.

I’ve checked the CBC further and found the Ferritin reading to be 7 ug/L, which I understand to be quite low. Serum B12 reading was 258 pmol/L, low, but just within range. Serum Folate reading 10.1 ug/L again within normal range.

We are hoping that the further tests the GP is conducting will address the other checks you mention. I must admit, I’ve not heard of some of them, so grateful for that information.

Looking forward to getting the results this week. Hope it is something easily corrected. We’ll be sure to update as it seems a situation others have also experienced.

Many thanks, Jackie.

Dave.

[Jm954 Administrator in reply to NavyDavy]

That's a really helpful reply. The ferritin is low and it also tell us something else, that your wife does not have ongoing high levels of inflammation, such as arthritis, which can also cause anaemia.

Most anaemias that are due to deficiencies or hypothyroidism cause changes in the size and/or Hb content of the red cells but that isn't the case for your wife. There is the outside possibility that her spleen is enlarged and storing large numbers of red cells or there are specific illnesses that cause a shortage of red cells despite everything else being OK. A quick feel of her tummy by the doctor would tell you about the spleen but a bone marrow test might have to be considered if everything else is fine. That would show what is happening in her bone marrow and how many early red cells there are.

Jackie

[NavyDavy in reply to Jm954]

Thanks again, Jackie. Again, useful information. A spleen check would easy to carry out as well. We had the results of last weeks test this morning, but sadly they were just a repeat of the previous test. Presumably to check the original figures. So no additional tests to find the cause of the low Hb and Ferritin. The figures on both tests are very similar. GP was due to phone today, but hasn’t done so. We have a number of topics to pursue when she does thanks to the replies.

Dave.

[Jsk1950]

I am too anaemia on last blood test , had FCR treatment in 2019 . Remission since , but my serum B12 reading was 2000

[NavyDavy in reply to Jsk1950]

Hi Jsk,

That B12 reading seems on the high side? Is that 2000 pmol/L?

Pleased to hear of your remission.

[FarmerJacks]

When prescribing me a whopping dose of Prednisolone for my AIHA, my hematologist said that the steroids would help the CLL as well. The steroids corrected my AIHA and did help the CLL. (But then coming off the steroids is another and difficult path, not without lots of side affects).

[NavyDavy in reply to FarmerJacks]

Thanks for that, FarmerJacks. I’ve been reading about Prednisolone. Agree that steroids can bring about other issues. Especially when taking other meds. Apparently some patients are also receiving Rituximab to treat AIHA.

Dave.

[Wen_dy]

Hello NavyDavy, I have been on W&W without issue until a couple of years ago when my Haemoglobin started dropping, on three occasions I was admitted to hospital for a blood transfusion and then prednisone on a reducing dose. I am currently on my fourth episode so the same round of treatment. My strong advice is to get your GP to refer you to a haematologist or her CLL specialist. I had a huge amount of tests and investigations and it was then I was diagnosed with AIHA, ordinarily they wouldn’t be treating my CLL as my levels were all acceptable but it is the CLL that is triggering the AIHA. My haematologist has been keeping a very close eye on me and has decided to start treating the CLL hoping to put a halt to the AIHA .

Good luck

[NavyDavy in reply to Wen_dy]

Hi Wendy,

I was reading some of your earlier posts the other day with some great replies and a wealth of AIHA information in them.

Looking at the figures, apart from the Hb, we are really pleased with the slow progression of the CLL. Maybe, as you mention, AIHA is going to influence the start of treatment? My wife has no history of anaemia, etc. It does seem that the Ferritin will be an important factor as B12/Folate are within normal range. Will seek a TICB to see what is happening with the Iron and Coombs test to see if CLL is having an effect.

Hope your present treatment is proving positive for you, Wendy.

Dave.

[Quarry]

Gracious, you both have been put through the mill....hope next few years easier

Is she not with a specialist? She should be as a matter of routine (GPs only see a few CLL cases in their lifetime). You should insist on a referral.

There could be many other causes for the HB drop, so your GP is right to look at everything. AIHA can be caused by CLL whilst CLL is pretty minor / nowhere near needing treatment (as in my case) - it can also be treated outside CLL treatments. There are other tests a CLL specialist would do to check if possible AIHA (eg positive DAT is an indicator ) - other standard indicators are a rise in reticulocyte count, bilirubin and LDH, and a fall in serum haptoglobins - these might have been done in the GP's blood tests.

As a matter of routine, she should have been referred, as it does take a specialist to wade through the many pathways. Each of our CLL presentations in unique!

[NavyDavy in reply to Quarry]

Hi Quarry,

The haematologist discharged her into the care of the GP about 5 years ago, stating that a re-referral would be required if the following criteria was reached. The standard Hb drop, Neutrophil drop, platetet drop, ALC doubling. So other than that, just the CBC every year. Not even sure if the same staff are still working at the hospital. The GP did fail to ring today, as arranged, so it looks as though tomorrow there is going to be a great deal of ‘proactivity’! Sadly, none of the indicators you mention were measured in the recent test. Yet in Spain, where we used to live, those items were measured as a matter of routine. The last 5 CBCs in the UK have been very basic. Agree also that a Coombs/DAT would be most useful.

Thanks, Quarry.

[Pearlpink]

Hi. I would get GP to do an urgent letter to haematologist saying your wife’s HB has dropped and could they see her. As you’ve said, the haematologist has said he would see her straightaway if anything changes, and an HB of 9.2 is significant. Any CLL specialist would be happy to see her with such a complicated history of cancer etc.

in the meantime ask the GP to do the basic tests for AIHA so that it is available by the time you see them.

If you ring up the consultants Secretary at the hospital and ask them to watch out for the letter, they will make sure it’s seen as soon as it comes in.

As everyone has said, AIHA is still quite rare but it’s important, and very few GPs will come across it.

All the best! Go with your gut, you’ve seen your wife through some pretty horrid illnesses so just emphasise to your GP that you would rather she was referred urgently. If haematology find that it’s something else, then fine. My ferritin was very low but my HB drop was due to my ClL.

All the best!

[NavyDavy in reply to Pearlpink]

Hi Pearl,

I think that may be the next course of action, although contact with the GP is proving a bit of a hurdle. We have a telephone appointment this coming Sunday, There’s a 10 day wait in this neck of the woods. A request for an urgent callback today proved negative. Thanks to the advice and information received in this post we have a good idea of what to ask for and the possible directions this may take. Interesting that you had the same low Ferritin and Hb as my wife now has.

Thanks, Pearl.

[skipro]

wow Hbg that low is a scare

As a surgeon I would be thinking transfusions

You should definitely check for internal bleeding with

Stool guiac on 3 separate dates and if positive have upper and lower G.I. endoscopy.

Also is she having unusual or heavy periods

Had any injuries

I’d recommend seeing a hemeoncologist asap

Skipro

[AussieNeil Partner Administrator in reply to skipro]

The trigger for packed red blood cell transfusions with CLL seems to be haemoglobin dropping under 8. We've had members reporting their haemoglobin dropping under 6, which is rather scary, considering under 6 is when there's a risk of organ damage from insufficient oxygen.

Neil

[NavyDavy in reply to AussieNeil]

Yes, I remember reading in a post of yours Neil, a while back, regarding your very low Hb and the start of treatment? Something not recommended if I've remembered correctly?

[NavyDavy in reply to skipro]

Hi Skipro

Not sure if I've misled you over the Hb reading. It's 94 g/L just below the reference level of 120. Some CBCs, particularly Spanish, report the values in g/DL. Thank you for your concern and advice though, much appreciated.

Dave.

[OSUfan]

Kidney hormone release is a factor in hemoglobin production in the bone marrow. my chronic kidney problem is holding my hemoglobin below normal levels says both my CLL specialist as well as my kidney specialist.

[NavyDavy]

Thank you, OSUfan, that is something we were not aware of.

Beginning to see the large number of issues that can affect haemoglobin. Also, was not aware of the kidney hormone function in the manufacture of red blood cells. Not an ideal situation for one with CLL. Interesting reading on that topic, appreciate that insight. Fortunately my wife's eGFR is normal and the other renal figures seem to check out.

Hope the Calquence is still working well for you🤞

Dave.

[NavyDavy]

Hi,

Just a brief update. GP phoned today, quite apologetic, to say that a referral letter has been sent to the Haematologist today, also requesting advice on which tests to conduct in order to assist with analysis of the Hb drop.

My wife also had a follow-up appointment with the Breast Cancer clinic today and the oncologist, obligingly, checked her spleen and gave her the thumbs up. The oncologist was also concerned at the number of medications she was currently prescribed for both the breast cancer (Tamoxifen) and the chronic heart disease. Apparently many of these have contra-indications and Tamoxifen itself is known to cause anaemia and low blood counts in some patients.

So some progress. Ever grateful for the advice of our wonderful members. 😊

Dave.