Iron too low

[Chirley]

Hi, I don't know what's happening. On my last admission for transfusion my doctor said that it was probably time to start iron chelation because I have had 5 units of blood every 5 weeks for the last 2 years. Well, he ordered an iron level and ferritin. They were so low as to be unmeasurable. (I got the results from my GP, not my consultant.)

I don't understand how this can happen. Has this happened to anyone else ? I didn't know whether to be relieved or not. It is just making me more puzzled than ever. I thought the body couldn't get rid of excess iron. So what's happening to the iron from my donated blood ?

Also, does anybody else get migraines when they are anaemic ? 85 or less. This has only been happening to me for the last couple of months. It starts with a visual disturbance and progresses to full classic migraine that goes away about 24 hours after the transfusion. I had an MRI which showed evidence of previous meningitis with ongoing inflammation (didn't know I'd had meningitis) I don't know whether the headache is from anaemia or the spinal covering inflammation.

It's full moon and I think it's making me cranky......feeling a little sorry for myself I think. I know I'll get over it, so please forgive me for my whining.

Chirley

[Birgitta-A]

Hi Chirley,
Perhaps you should ask for new tests - as you wrote the test results you received are not realistic when you have got so many units of packed red blood cells.

As I have said before I think your consultant makes uncommon ordinations - I have still not read anywhere about 5 units of RBC:s every 5:th week. Most patients get 2 units because the HGB should not be so low that the patients are tired or other have symptoms like headache.

Do you know if the meningitis is caused by virus? Is it supposed to disappear without treatment?
Kind regards
Birgitta-A

[Marlene]

What was your iron when you first started having problems? Do have any prior test results to compare?

I would also consider possible bleeding somewhere. That's the most common way to loose iron is through blood loss like an ulcer, your periods, etc.

John would get headaches with low HGB also.

I too would get retested. I know I sound like a broken record, but make sure they checked your B12 and folate also.

[Birgitta-A]

Hi Marlene,
You know we don´t feel when the ferritin value is too high. The liver, heart and other organs are slowly damaged without symptoms . My dr has controlled my liver tests once a month since dx and they have never increased (I don´t drink alcohol and have never taken any drugs since I havn´t been ill before I got MDS). I started with Desferal after about 40 units of RBC:s - they often mention 20 units as a limit for chelating therapy.

Yes, B12 and folate were OK when I had my dx - I now take both and B6 as well as multivitamins without iron. I have read that when you have hemolysis as I have you need lots of folate.
Kind regards
Birgitta-A

[Chirley]

Hi,

Thanks for the replies. I was originally diagnosed with iron deficiency anaemia. I have had 5 BMBs, 3 showed no iron stores and 2 showed normal iron stores. The reason that the haematologists decided that I had evolving MDS was because even in the BMBs with normal iron , they still showed hyperplasia, dehaemaglobinisation and dyserythropoiesis. This along with the low white cell count indicated something more than just the iron deficiency. Also after I had iron infusions the reticulocyte count was expected to increase but it never did. I was told that I must never have another iron infusion because of the bad reactions that I've had to them and last time I developed a little bit of kidney failure as well as the all over blisters, rash and fever.

I have had a couple of tests that have come back positive for bleeding in the bowel but no cause has ever been found. I have had gastroscopies, colonoscopies and capsule endoscopies (swallowing the camera and walking around with it for 24 hours). I have Barretts oesophagus and had some colon polyps removed. Other wise nothing else was found.

Yes I agree with you that 5 units every 5 weeks isn't optimum but this is the only thing he will consider and I don't want to change doctors again and go through all those tests, probes, questions etc again. I would prefer at a minimum 4 units every 4 weeks because it is in that last week that I feel the worst and it's very hard to cope with just daily tasks at home let alone going to work as well. As for the meningitis, it can be viral or bacterial but as I didn't know I had it, I don't know which one I had.

My GP said that he would call what I have "bone marrow failure secondary to iron metabolism error". It sounds like something he made up on the spur of the moment.

Any way there is no point thinking about it. I still have a problem no matter what's causing it and I just have to suck it up and get on with it.

Thanks again,

Chirley

ps B12, folate has always been normal

[Marlene]

Hi Chirley,

Sounds like a real medical mystery. It must be very frustrating try to work through this. If your GP thinks its a metabolic disorder, has he referred you to someone who specializes in metabolic diseases?

Marlene

[mannythedog]

Hello Chirley,

I am sorry I have nothing to add; however, Pop and I are thinking about you.

Scott

Son of Bob