Appeal for Advice about Anemia of Chronic Disease

[LinDonaldson]

Hello there,

I was diagnosed with Myxedema in 1994. This is my first post for a couple of years. I dropped out because of my health but I am beginning to recover.

I have been diagnosed with Anemia of Chronic Diseases (ACD) which is also called anemia of nflammation (AI). The consultant treating me is rude and ignores my questions. Up until my last two treatments he arranged for me to have a blood transfusion and an iron infusion every three months. He now tells me that he will only arrange for blood transfusions. Yet he will not tell me why. Some papers I have read say that iron infusions are not beneficial and others say that iron infusion rather than blood transfusions are the recommended way of treating ACD. I will ask for a change of consultant but please tell me do any of you have any better information about treatment? All I know is that if I only have blood transfusions then I still notice a pulsating sensation in my head and rapid heart rate. I am 64 and fighting to remain clear of heart failure or stroke. Unfortunately, I still feel fatigued. I know I should have a full blood count to see if my iron levels have reached a normal range but the whole process is so exhausting. Any ideas would be very welcome.

[humanbean]

This link explains what is going on in Anaemia of Chronic Disease (ACD) and I found it very helpful in understanding the problem :

irondisorders.org/anemia-of...

The following link is a UK page and it describes the kind of treatment the NHS would do in ideal circumstances :

patient.info/doctor/anaemia...

For information about different kinds of anaemia see this useful summary :

irondisorders.org/Websites/...

Problems arise when someone has multiple causes of anaemia. For example, iron deficiency leads to ferritin being low. ACD leads to ferritin being high. With both of those in the same body you'll end up with ferritin looking normal, being told you are fine, go home, stop bothering us - but have a prescription for anti-depressants.

You need to get copies of blood tests to find out what is actually going on. If you can afford to do so you could pay for testing yourself, but it could get very expensive.

If you feel worse without the iron transfusions and your heart rate increases a lot (i.e. you develop tachycardia) then you probably do need iron.

I had both ACD and iron deficiency because of a GI bleed. I got no help to recover from doctors, even after they found and fixed the cause, because my ferritin never dropped below range. It was only when I bought a copy of my GP notes that I found out I'd had under the range iron and total iron binding capacity three years before being "fixed".

In order to get better I had to treat my thyroid, I had to fix my nutrient deficiencies, I had to take prescription-strength iron tablets which I bought without prescription from a pharmacy, and I had to go gluten-free. Until I went gluten-free I absorbed the iron very poorly. I also changed my diet in other ways - I reduced my carbs and increased my good fats. The tachycardia and chest pain I suffered with reduced and gradually went away as my iron levels rose. I still have a pack of beta blockers and I take one to slow my heart down on the very rare occasions I still need to.

[LinDonaldson in reply to humanbean]

Hi Human Bean,

Thanks for the information. I will go to my GP and ask for print outs. I know my haemaglobin levels never go above 11 even after a transfusion. They have dropped as low as 4.

I have multiple chronic disease sadly. Apart from hypothyroidism I have type 1 diabetes, osteoarthritis, asthma, and fibromyalgia. Related issues are very low vitamin D3 and ACD> My thyroid levels seem OK but I was better when taking T3. I had to stop taking it in order to have aortic valve replacement (3 years ago). I try to control the diabetes, although my sugar levels go up and down due to mental and physical stress. The blood tests show that I am normally inside range. Yet the highs worry me. (seeing consultamt). I am in a lot of pain due to the athritis. I control Vitamin D3 issues. I also have GI issues and am awaiting a fibroscan for my liver. The latter will show if I am producing hepcadin. As it is this chemical that impairs ferritin release in to the blood stream. My ferritin stores are high but I do not know what my serum blood levels are like. Lastly my blood results show fairly high levels of inflammation markers.

I underwent a range of tests to see what type of anaemia I had. These tests included a bone marrow aspiration (ouch). The outcome was ACD. Before that I had years of taking prescribed and over the counter supplements and eating iron rich foods. However, I do need to have a review of my diet and will try excluding gluten. I will read your rely again and take note of your very useful advice.

I am sorry you have the same condition and impressed by the way you have tackled it.

Thanks so much for taking the time out to reply.

Kind regards

Lin