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How am I still anemic?

Anon2023 profile image
19 Replies

hi folks. I’m hoping for some advice. I had open heart surgery in sept 21 and then again in Jan 22. I had a blood transfusion after the second one (1 bag). I’ve been anemic ever since. They started giving me on iron tablets 3 months ago , after dietary changes didn’t improve things , but my iron stores have still remained low. I now need an iron infusion. I’m wondering what may be causing this as I’ve had no heavy bleeding since the op although I’m on warfarin. My diet is iron rich. Can having a mechanical heart valve cause iron deficiency? I’m also have hypothyroidism but it’s well controlled by levothyroxine. My levels of fatigue have been getting much worse in recent months which I put down to bisoprolol but could be caused by anemia. If anyone has any ideas I’d be grateful.

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Anon2023
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19 Replies

Hello :-)

I am really sorry I do not have any answers for you but I am sure others will and maybe you could ask your Doctor or if you still have a Consultant what is causing this could be something really simple

But what I wanted to say is I have just read what you have been through on your profile and I think you are a strong lady and was amazed at what you have coped with not shocked that it would leave you with health anxiety which I hope is improving a little

So dealing with all you have I am sure this iron problem you have at the moment you will come out on top eventually :-)

So much respect for you and sending you lots of best wishes that you feel better soon :-) x

Anon2023 profile image
Anon2023 in reply to

Hi. Always lovely to hear from you 😊. I was thinking of changing my bio as I wrote it when I was still a bit shell shocked 😂. I’m also thinking of changing my user name to something a bit more interesting!! I think I was just incredibly unlucky in some respects but also very lucky that my heart surgeon was amazing, as was the stroke team. I’m still alive and feeling stronger. The stuff like anemia are just minor inconveniences really. This forum has been brilliant for supporting me along the way and you have been lovely. I hope you are doing ok and that you are coping with the heat. I live in the north east so it’s not that much of an issue although the wall to wall sunshine has been a shock to the system!! X

in reply to Anon2023

Hello :-)

I so would not change your Bio

I think it helps when we can read what someone has been through to get a better understanding where they are coming from and to have gone through all what you have I would leave that on !

Having said all that I have nothing on my Bio maybe there is not enough room to say how crazy I am not sure why I have never put anything on other than that :-)

What is wrong with your user name it is not boring at all but if you do change it then don't change your profile pic as well or I won't know who you are :-D

I actually recognize members more through their profile pics than their usernames to be honest :-)

Yes I agree what is a little bit of anemia compared to what you have come through but I would ask them to explain why you are struggling with holding on to Iron to give you piece of mind :-)

O you are so lucky if it is not to hot where you are I am struggling in this heat I cannot wait for it to get cooler :-)

Lovely talking to you :-) x

Hi, The problem with Anaemia is that it's so difficult to determine the cause., I've had it for about 4 years now, been on iron tablets until recent infusions, had 6 units of blood over April /May and a procedure for a minor bleed, and my Haemoglobin has now risen to 121. Quite high for me, The consensus from Doctors and Cardios is that I have Haemolytic Anaemia caused by my Mech Valves destroying red blood cells too early. Medication is Folic Acid. I hope you don't have this. Do you know what blood count is?

Anon2023 profile image
Anon2023

Hi. I was hoping you would reply as I remember you saying about your anemia, so thanks 😊. I dont know what my count is at the moment as the hospital rang and spoke to my husband just to book me in for the infusion. I think previously it was about 8 or 9? Not sure though but it was enough to put me on iron tablets which don’t seem to have made much of a difference. I hope you don’t mind me asking but What tests did they do to identify your Haemolytic anemia and is the treatment working? Do you feel better? Thanks again for your reply, I really appreciate it.

in reply to Anon2023

Hi, It took a while to get there, as the GP originally had me down as having iron deficiency, which was fair enough. It was only later on that my haemoglobin levels dropped, and the Cardiologist and Haemotologist eventually diagnosed Haemolysis. Simply by markers in my blood tests. Also as Mech Valves can cause Haemolysis and my Aortic and Mitral valves have leakage, Haemolytic Anaemia was therefore diagnosed. I'm only on Folic to replenish my blood, but haemoglobin is always lower than it should be. Because I also have HF, it gets a bit muddled with what causes what anymore, but since I've been on Bisoprolol and Entresto my health has improved. To be honest, I've had it explained to me a couple of times and it goes over my head.

It's probable that your bloods have already been checked to rule it out, but may be worth asking.

Anon2023 profile image
Anon2023 in reply to

Hi. That’s great thanks. I suspect that my bloods haven’t been thoroughly checked as the hospital just did a recent routine iron level test to prescribe new meds. I think I’ll need to speak to my gp but it’s easier to get an appointment with Lord Lucan. I’m just trying to get to the bottom of why I’m so exhausted in recent months. It could be anemia, hf or meds who knows!! Thanks again.

in reply to Anon2023

Hi, I find it odd at times with blood tests, it's as though they only check for what they ask for or if it suits any given narrative. The Medical Centre took blood on the 26th July for Haemoglobin level, and then again on 12th August for my Kidney function, barely 3 weeks apart. At a time when appointments are at a premium, it would be more sensible to carry out the tests at the same time.

I hope you get to the bottom of it and the sooner the better.

Am I right in thinking you were at the Freeman, if so, are you still under their care or reverted back to a local hospital?

Take care

Anon2023 profile image
Anon2023 in reply to

Hi. I know. Whenever I have a gp appointment they will only deal with one issue at a time now and you need to make another appointment if you wish to discuss anything else. It’s crazy. I was at the Freeman but I’ve been discharged by them back to my local hospital.

Clerkenweller profile image
Clerkenweller

I have no knowledge of mechanical valves but post stent i was put on a quite large array of drugs as the result of the discovery of an aortic aneurysm. After 2 years I developed anaemia. The cause was not discovered for 6 months until I was hospitalised and given three units of blood and one of iron. Then an endoscopy discovered slow bleeds in the atrium. I believe it is referred to as ‘watermelon stomach’!! Because of my meds I don’t clot. Apart from fatigue I also experienced severe night cramps and constipation. If those symptoms ring a bell it might be worth recounting my story. The condition was fixed by another endoscopy where the weeping vessels were cauterised (no pain involved). Now I’m right as rain.

Anon2023 profile image
Anon2023 in reply to Clerkenweller

Hi. Thanks for replying. It’s great that you are feeling better now but worrying that they took so long to discover the cause of your anemia. I don’t get cramps and I’m not constipated but I am very fatigued. I’m going to do an e consult with my gp and urge them to get to the bottom of this and I will mention what happened to you incase it’s the same for me. Thanks again.

Becksagogo profile image
Becksagogo

About three weeks ago I was struggling to do anything and blamed it on the heat, age and heart condition. This bought on anxiety and depression.Then they checked my blood and I too needed an iron infusion; ever since I've been like the Duracelle bunny! My whole demeanour has changed and I am happy!

My last infusion was about a year ago and it really does make a difference. I am now going to be monitored more regularly. Iron tablets don't work for me and I don't eat much in the way of iron rich food.

Like you, I can't put it down to anything such as internal bleeding and whilst I am currently taking Warfarin, previously I was on Rivaroxoban.

The only down side for me is weight loss. I am down to 42 kilos . Its difficult to get clothes for a woman of my age, in my size 6 to 8.

Anon2023 profile image
Anon2023

Hi. Thank you for replying. I’m pleased that you are feeling better. I’ve got the infusion next week and will keep my fingers crossed that it does the trick. I would much rather feel like the Duracell bunny than the walking dead!! Thanks again.

irishwife93 profile image
irishwife93

Hi @anon2023! Welcome to the forum.

My husband experienced a similar problem and I received some great advice from this forum! His iron levels dropped to about 3.2 and he received two iron transfusions, he’s feeling a lot better now. We still haven’t gotten to the bottom of the cause and he’s got many referrals on the go now, but a cardiologist did mention there’s now evidence of heart failure as a direct cause of iron deficiency. Your levels sounded quite low too at 8, so it’s worth pursuing a haematology referral to see whether you have haemolytic anaemia or something similar.

If you are on any proton pump inhibitor medications to neutralise stomach acid then you will likely not absorb much iron, as acid is required to release the iron molecules from food! My husband takes Lanzoprazole twice daily as he has a history of stomach ulcers and because of all the heart meds he’s at a higher risk of bleeding. If you take similar medications like Omeprazole this may be contributing to your issue. I’d recommend to keep taking them as they do prevent any dangerous bleeds from occurring.

Another point to consider is that Iron tablets are notoriously difficult for the gut to absorb, it helps taking them with vitamin c - so a big glass of orange juice or soluble vitamin C, or try an oral spray which is absorbed better into the blood stream from the vessels in your mouth. I found a spray by the brand “Better You” at boots. My husband started taking it just days before he was transfused so I can’t comment on the efficacy of the spray but the reviews on the Boots website were very good.

Drinking tea or coffee with your meals will reduce iron absorption so better to leave some time in between. Dairy products also reduce the absorption. So avoid having a glass of milk with your red meat. I’m sure small amounts of dairy like cheese sprinkled on spag bol are fine, and if you’re going to have an icecream or yoghurt on it’s own there’s no iron to absorb anyway!

I hope some of this information is helpful and if you do find out the cause of your iron deficiency please let us know if you are happy to share, as it seems like such a common problem in heart patients!

irishwife93 profile image
irishwife93 in reply to irishwife93

Sorry it’s worth clarifying here my husband has heart failure and that could be the cause of this iron deficiency, I’m not that heart failure is the cause of yours at all!

Anon2023 profile image
Anon2023 in reply to irishwife93

Hi. Thank you for your reply. It was very helpful. I do take omeprazole so that’s interesting. I also have hypothyroidism which could be another contributory factor. I have heart failure too although I’m told that it’s mild/moderate. When you have a heart problem it just seems to be one thing after another!! I I’ve been out and bought some vitamin c tablets and folic acid so I’m hoping it’ll help. I hope your husband is doing well. Thanks again for the advice, I really appreciate it. X

Raylpa profile image
Raylpa

Hi Anon I am currently receiving oral iron therapy from GP as have have iron deficient anaemia. As others have indicated a possible cause is malabsorption of dietary iron. Plant iron sources are in particular poor at being taken up by the digestive system. Iron needs vitamin C to be absorbed and calcium and fibre can inhibit absorbency too as can tanning in grapes and tea! So avoid tea with meals it’s not easy this iron thing! Good luck

Anon2023 profile image
Anon2023 in reply to Raylpa

Thanks for replying. That’s good advice. I’m hoping that after my infusion next week I’ll start to feel human again 😊I bought some high strength vitamin c tablets today and folic acid. I’m hoping they will help.

Raylpa profile image
Raylpa

👍 ☘️

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