The doctors arent listening!

Hi Andy/ everyone, I went to see a cardiologist today. Presented all my symptoms of chest pain, breathlessness, palpitations, shortness of breath, dizziness, fatigue, regurgitation in heart etc. Took one look at my serum ferritin and haemoglobin and said oh you are anaemic. I know Im anaemic not because of the serum ferritin but because of the low hb. I tried to explain that my iron readings are probably not a true reflection because im thal and our iron readings more often than not come up as low even when they arent. I told him I want to get an MRI done to check for iron overload in my heart given that I have never chelated and would have been accumulating iron over so many years. Not necessary he said. He is convinced that I cant have iron overload because my ECG, Echocardiogram and x-ray all came back ok and because of my serum ferritin and transferrin levels which are low and mid range respectively. So he isnt going to do the MRI but instead wants to hook me up to a 48hr monitor to try and pick up any irregularities in my heart. What are you thoughts please.

I think the 48 hour holster will be a good option.  It'll be able to pick up any abnormalities that you are experiencing. 

Hi Sharmin, thanks for responding. Because things are sooooooo expensive down here, I've had to decide on what to do first as a matter of urgency and have opted to go straight for an MRI tomorrow (without my doctors knowledge) . Thought I might as well get this done as this will pick up/ detect any iron overload which is what I'm thinking is responsible for all my symptoms. I'm also going to do my UIBC, TIBC and serum Iron. Also with re: whether I'm intermedia or Major. Well I was told I have alpha thal but can't remember the doctor mentioning whether it was minor, intermedia or major though I dont think I'm major given the fact that I've never had to get transfused and have fared ok till recently. But my plan is to do the MRI, UIBC, TIBC and serum iron. I did my Serum Ferritin and Transferrin about 2 weeks ago. I will then do the DNA analysis at the end of the month to ascertain if I'm intermedia. I did the hb electrophoresis for Beta bout 2 weeks ago also just to be absolutely sure I don't have beta thal and I dont. So it's definitely alpha thal and I'll confirm what type at the end of the month. So tomorrow is the D-day. (and heart skips a beat) I'm praying to God for a miracle here . But there is nothing He can't do. It could still turn out that I don't have iron overload afterall and was just strangely but truly low in iron.

Hi Andy/ Sharmin, please i need your advice. Im at the hospital. Apparently they dont do Cadiac MRI. Please what other tests can I do to check for uron overload on the heart. Urgent please

Hi all, I couldnt get the Cardiac MRI done as I had hoped. Had to do with some weird thing about  being able to do do a chest MRI but not cardiac MRI. But anyways Im just wondering now if I should do the liver MRI and test for iron overload that way. I mean if a person has iron overload in liver and starts chelation for that then that ought to take care of excess iron in heart right. Andy/ Sharmin/ anyone kindly respond. I desperately need your advice here.

If your regular iron panel tests, such as serum iron and saturation are not above normal, there is virtually no possibility that you have an iron load in your organs.

What is your Hb level? Are you taking any supplements?

Hi Andy,  sorry I'm just responding. I haven't logged on in awhile so I'm m just seeing your response. Woow I have certainly succeeded in confusing myself haven't I . I was under the impression that you could still have iron overload despite iron panel test results that show iron deficiency. I see I was totally off with my thoughts on that. Forgive my ignorance. There is alot of info to take in and I'm still learning. So based on what you've said,  I do have iron deficiency then. Results below. Serum Iron 19.76 - range 37-145. Ferritin 7.42 - range 13-150. Transferrin 33.5 - range 20-50. TIBC 96 - range 250-450. I guess that is why my RDW is also high ie 19.3 which is in line with someone who is iron deficient. So I have two questions. 1.) Is it okay for me (a thalasseamia intermedia patient) to use Spatone to raise my iron? 2.) My TIBC  is mid range.  Certainly not complaining but one would have thought it would be on the high side as it would have been trying to absorb iron due to me being severely iron deficient. Any ideas why this is so? Lastly,  you asked about my HB level.  Last time I checked,  it was quite low ie 7.2

At this point, it's best to take the iron supplement for one month and then test again. If anything changes upwards, you can be sure there is deficiency. Even when intermedias don't show their true iron load, they will usually test on the high side. It seems very unlikely that you could have an iron load with such low numbers all around. One other number to take a look at is the RBC from the CBC. It can sometimes give a better idea if iron deficiency is present, but I think the real answer is that there is no perfect test for iron load outside of MRI. Many of the reports I've been shown will have at least one value that doesn't fit with what is expected, si it really is hard to definitely diagnose deficiency. In the end, a one month trial has often been the final part of the diagnosis.

Hi Andy, thanks for the advice. I have started taking Iron tonic. Was advised by a Hematologist to take double dosr for two weeks with vit c, folic acid and B12 and then re-test. But I must say that first night of using the blood tonic, I slept like a baby for the first time in weeks. Plus the chest pain has dissapeared, I can now sleep on my left and Im feeling much better. So thank you. I guess having heavy periods has been a blessing in disguise somewhat as it helped prevent iron overload. I just should have monitored my iron levels more closely to ensure it didnt result in IDA. Also just as an experiment, I am using only the iron suppliment. I want to see if my hb will go up alongside my iron levels without using fluted pumpkin leaves. What do you think?

I think you wait and see if your Hb rises. Usually, you will see some change after one month. If it rises, continue taking the iron.

Hi Andy, will do just that. Thanks for the advice. Also I just started using Tumeric. I am taking it three times a day but noticed a stabbing pain in my chest on the second day of use. My chest pains had drastically reduced (no dissappered is more like it) since I started taking my iron suppliments. But when I started taking Tumeric, I noticed the sharp pains almost immediately after. I thought Tumeric is supposed to be beneficial to Thals. Any idea why this is so? Your input as ALWAYS will be HIGHLY appreciated. Thanks

That sounds like heartburn, which can be an issue when taking spicy herbs. What form are you taking it in?

Hi Andy, thanks for the response. I was taking the Tumeric in powdered form. I have stopped it for now and the chest pains have reduced alot. Maybe I need to reduce the quantity though I was doing a teaspoon thereabout. Also I am feeling way better now (I think my hb has definitely gone up too as Im feeling really good) but I will be repeating my blood tests at the end of the month. Also would there be any harm taking iron supplements every couple of months given that my periods are quite heavy and will start the iron depletion cycle again at the end of the month? Thanks a mill Andy

Try it in capsule form after a meal. A teaspoon may be a bit high for a dose.