Have I cardiac haemolytic anaemia or haven't I?

[Taviterry]

I have been borderline anaemic for some years and it seems that my TAVI a year ago and the consequent medication may have pushed me over the threshold. On May 31 a haematologist wrote to my GP following tests on March 5 to say that "it is likely [that I have] cardiac haemolytic anaemia".

But on April 30 and on July 23, I had blood tests at A & E (to where I went with exhaustion) and was told I was NOT anaemic. Yet to me the latest results suggest I am, with the following, in chronological order, outside the reference range.

red blood cells: 3.80, 4.15, 3.9

Haemoglobin: 117, 129, 124

Haematocrit: 0.36, 0.39, 0.355

Haptoglobin: not tested, not tested, <0.08

Ferritin: 82, not tested, 549 (!)

The spectacular increase in ferritin follows an iron infusion on May 30 and appears to be too much of a good thing (reference range is 30-400) and may partially explain my current fatigue. The other factor is low Vitamin D, and my GP has suggested tablets.

I'm having more blood tests on August 5 and a telephone appointment with the haematologist on the 9th.

Somewhat technical, I know,but comments would be of interest, please.

[Lezzers]

Hi tavitery

It was interesting reading about your anaemia. My husband has heart failure and he's been anaemic for years, as long ago as probably 2018 all his bloods have been below normal range.

Iron tablets don't work for him because of his HF so he had a couple of iron infusions in 2022 & that really helped with his fatigue.

Because he was so poorly last year his cardiologist asked his nurse to look into giving him another infusion. However because his ferritin was too high (like yourself this was caused by the infusion) he couldn't have another one despite all his bloods being below normal. When I asked his nurse to explain how you read the results with the ferritin etc & was told it's too complicated to explain!😳 So is it possible that the ferritin being high means you're not anaemic despite the abnormal bloods?

He's recently has his 6 monthly blood results & again his bloods are below normal, however they don't seem to have tested his ferritin this time!! Will get his last few results out and check the levels against yours.

Ps: my husband also had to take it D tablets for a time last year

[Taviterry in reply to Lezzers]

That's interesting and useful, thanks for your reply. I've just seen my discharge letter from A & E and that says "impression not anaemic". When I'd asked the staff what then was my problem, they said they didn't know. (BTW they were all excellent.) The doctor noted my high ferritin and low Vit D but didn't mention what I found out later from Dr Google, that both these could lead to "heavy" arms and fatigue. I did mention a nasty insect (not tick) bite I had ten years ago that gave me a 38 ferritin level which gradually increased over the years, and the A & E doctor arranged a test for Lyme Disease. (I had several of these ten years ago, and all proved negative.)

[Lezzers in reply to Taviterry]

Bloods are as follows;9 Jul 2024

Red blood cells 3.73. Normal range 4.5-5.5

Haemoglobin concentrate 125 normal 130-170

Haematocrit 0.374 normal 0.4-0.5

Haptoglobin??? I've never heard of this

12 April 2024

Red blood cells 3.76

Haemoglobin concentrate 127

Haematocrit 0.384

15 Nov 2023

Red blood cells 3.48

Haemoglobin concentrate 120

Haemocrit 0.34

In addition to the above his mean cell haemoglobin level is always above normal 33.5, 33.8, 34.6. normal range 27-32. His total white cells count fluctuates between normal & below normal. His lymphocyte count is always below normal. It was the abnormal lymphocyte count that made me start jumping as that can be an indication of cancer. Unfortunately he did have to have cancer treatment in 2021 but his lymphocyte count still remains abnormal, though no one seems to be concerned about any of the results. He does now have a new oncologist & will mention the results again at his appt on August.

Interestingly, and something I've missed is the fact his ferritin has not been tested since his nurse said it was too high last year!

Hope this is helpful in some way. Tbh, the results don't mean much to me. Presumably as no one is bothered about them is that because though they're abnormal maybe they're not too abnormal?

Will check the ferritin count & let you know

[Taviterry]

Haptoglobin testing is used mainly to help diagnose and monitor haemolytic anaemia and to distinguish it from anaemia due to other causes. My level seems very low (reference range 0.4 - 2.68). That apart, your husband's blood results seem similar to mine?

[Lezzers in reply to Taviterry]

That makes sense, my husband's anaemia is caused by his HF so they know what the cause is. Yes, I did think the levels were very similar. Haven't yet checked the ferritin, I've literally got so many results to look through as he was having bloods pretty much every week for months. But I would think the high ferritin issue would be the same regardless of the cause of anaemia?

[Taviterry]

Having spent the last year concentrating on food and supplements that aim to boost my iron, I'm now checking out those to lower it! (Sigh.) I had guessed that eggs might be bad, so omitted them from yesterday's Big Shop, but now have discovered that they're good. Red wine is good, not that I drink it very often - perhaps until now ...

Vitamin C is now bad, because it improves the absorption of iron.

[Drummer20 in reply to Taviterry]

I’m worried you are cutting out foods that are good for you to manage this.You need advice about self management.If you have had infusions the results aren’t straight forward .If you have been told you are anaemic then not I wouldn’t cut out foods that boost iron absorption they are so important for other nutrients too.Sometimes these things are due to the liver not being able to break down the blood cells quickly enough.Sorry if I’m wrong its just the reason for high ferritin is complicated.

[Taviterry in reply to Drummer20]

Informed dietary advice is difficult to come by! And I suspect that my GP and surgery pharmacist won't be able to offer more than general information. My iron is 18.00 (reference range 5.83 to 34.5, so not too bad). Authoritative websites suggest that I should avoid foods rich in iron and Vitamin C, but I need to be careful with some of the foods they do suggest because they are not recommended with anti-coagulants! Mushrooms and eggs are good.

I was very OK until about nine days ago, so hopefully can now get the levels down to return to a reasonable life.

I do have a nutritionist friend, but suspect her knowledge might not be comprehensive enough to help.

[Eddie64]

could I ask where everyone are getting their results from please,as I also have been diagnosed with anaemia and low d but they can’t find out why ,I had ha and 2 stents fitted 3 years ago,and I’ve just had endoscopy because they found blood in my stools,that’s come back negative,they have booked me in for the camera down my throat,don’t know when that will be ,what else can cause anaemia

[Drummer20 in reply to Eddie64]

I’m a retired nurse and a busy body.There are a lot of different types of anaemia.Anaemia caused by lack of iron,or caused by blood loss ,anaemia caused by poor diet,anaemia caused by lack of vit B12 which can be caused by a problem with the small intestine like crones and inflammation in the bowel also coeliac disease.There is also anaemia caused by diseases that affect how the red cells are made and broken down in the liver.also malignancy.Haemoglobin carries the oxygen around the body in the red blood cells.After an operation haemoglobin can go down to 80.In a young person who is able to eat a range of foods it can come back up to normal range in a week or two.Sometimes iron tablets are given sometimes a blood transfusion is needed if the person is breathless and weak.Anaemia due to heart failure has to be treated in a different way.Which Im not familiar with.Sorry if this is too long and not what is being asked.

[Eddie64 in reply to Drummer20]

That’s brilliant thank you,now all I can hope for is they find witch one it is lol

[Taviterry in reply to Eddie64]

Results of my blood tests are usually on my on-line hospital records within a few hours and with my GP within a day. I can understand the need for progressive tests, but it can be a little wearing because of the delays in fixing appointments and discussing results. My GP referred me to Haematology in November, a consultant saw me in early March and arranged tests for the same day and I had an iron infusion and telephone discussion at the end of May.

[fishonabike]

thank you for drawing attention to your unusual condition - your post has prompted me to look it up and find out more about this unusual form of anaemia

i will be interested to read about future developments - i hope that you will be having further investigations to confirm the diagnosis and find out the cause, and that this will lead to effective treatment for you

i hope that your nutritional efforts give some benefit, but suspect that these can only be supportive as the cause needs to be identified so that you kow exactly what yo are dealing with - Good Luck

[Taviterry in reply to fishonabike]

Thank you. The cause is the tissue valve that was inserted 53 weeks ago, perhaps not helped by some of my medication.( An original damaged valve can also cause CHA.) A gastroenterologist ruled out blood loss without feeling the need to go "up and down" . Some of my more esoteric blood results suggested one or two potential nasties might be the cause, but the haematologist reassuringly ruled these out.,

[fishonabike in reply to Taviterry]

so it's acquired rather than inherited

[Taviterry]

It can be inherited as well as acquired. nhs.uk/conditions/rhesus-di...

[Taviterry]

I'm feeling a bit better, though a few symptoms still present (as doctors might put it). But I was surprised to get a phone call from the hospital at lunchtime to say it was sending a courier with high-strength Vitamin D tablets - on a Sunday. I did say that I was taking some low-strength tablets(10mcg) but apparently I need something stronger. A few hours later, a colleague rang to ask if anyone could collect them from the hospital, six miles away. I said that I was coming in anyway on Wednesday, but she seemed to think that wasn't soon enough, and confirmed that a courier would deliver them.

In November 2023 my 25 hydroxy Vit D was 63 nmol/L, on Tuesday it was 38 (NHS reference range 50-200). Since a skin-cancer scare ten years ago, I protect against the sun and take low-strength Vit D tablets -and following my hospital visit my GP had recommended that I buy some that were stronger - 25mcg (also labelled as 1000iu). I asked the first lady who rang me today what strength I was being sent, and she replied "800" ...

I'm very impressed that there were staff on duty on a Sunday to ring me and arrange a courier, but wonder if the Vit D insufficiency needed such an urgent response. And some non-NHS websites suggest that 38 nmol/L is normal...

EDIT: The pills have just arrived by taxi. (When I took a taxi home on Tuesday it cost £22.50.) They're 800iu Colecalciferol (Vitamin D3) which, it seems, I can buy over-the-counter, albeit in lower strengths.

I'm puzzled ...

[Taviterry in reply to Taviterry]

I'm unsure whether updating an old thread makes it prominent but ... I've just read that people with haemolytic anemia should not supplement with iron, as the condition produces its own iron (and it can take a long time for the excess to leave one's body.) My last test ten weeks before the iron infusion showed low iron at 11 (range 12-31) and ferritin at a not unreasonable 82 (30-400). Seven weeks after, the readings were 18 and 549, with my GP saying it was OK to resume 332mg ferrous fumarate...

Sure, there are apparent contradictions here and many other blood readings, and the latter have to be looked at together.