What's your ferritin level?

Dore,

Because high ferritin levels in transfused patients already indicate iron overload, these other iron tests are not necessary. Instead, an analysis of the real iron load, using methods like MRI, SQUID and T2* are used to determine the true iron load. In non-transfuing patients, the complete iron panel is used to determine if and why anemia or iron overload conditions occur. In your father's case, the iron panel is used to determine when he should do a blood-letting (phlebotomy) to reduce his iron.

If you also have mild hemochromatosis it does explain your inability to lower your ferritin to the level you would like to see, as you have to deal with iron overload from transfusions and absorption in the intestines.

Thank you Andy. I know I got double trouble with getting the fe down. I have not had any of those tests in the last 10yrs, but there is light that the t2* will be done in the summer. So somehow they should have test that. Let we make I deal. I will restart posting in this topic when my fe is under 2000. ;)

Dore,

Make sure that whoever does your T2* has proper software and experience with the test. 

In July/08 my son had a T2* in Oakland and then the test was repeated here in Canada a few days later to see if we were able to get the same results.  There was a difference between the results as the test in Oakland found no elevated iron levels in his heart, but the one done in Canada found slightly elevated iron levels in his heart.  We are hoping that over time the test here can be calibrated such that patients here can have it done, because it is not possible for all patients to travel to Oakland every 6 months or even every year. 

Sharmin

Update

In February I have had 3 blood transfusions and yesterday I had my first for March. At the second transfusion I had a ferritin of 2386.......now I got a ferritin of 1534!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I still can not believe it. When I found out I yelled through the room of chemo's (and tx). I am so happy. I was very, very ill yesterday, but it's all worth!!!

 

Today I will make a lil trip with my mother by car through the sun, because we have had an invitation to celebrate Iran New Year. And dad promised me to take out for dinner (*****) when it came under 2000.

Dore, congratulations my friend...way to gooooooooooo, i am soooooooo happy for you, keep up the good work.
manal

Sharmin

  Dore ,

Umair

Hoera U deed het.




                                   

Zaini.

After such a great news from Dore, I don’t want to spoil it (Congrats Dore!! ), but here are my SF levels from last Thursday: 6068

My hb was a bit lower this time, 9.5. Just a reference, I’m in my mid 20s and weight 42-43 kgs.. I’d like to post some of my other results to keep track and keep you updated, where would be the best place to do so?

Andy, my ALT and AST levels were lower than before, so, looks like Nigella has already started working for me! Thank you and everyone else for all your advice on it.

One other thing I noticed on my report under morphology is a comment on “Giant Plts” would that be giant platelets? My platelet count was normal at 210. Would I be at a risk for clot/blockage in my bloodstream? I’ve actually not been paying attention to such comments, but noticed this comment was not there since at least Dec 5th, 2008. Other blood slide review comments were as follow:
Abnormal A, 5-20 nRBC/1….(didn’t get full comment on my report) and giant plts.

Andy and other members, do you have an idea what all this indicates? I have experienced palpitations in the last month, and my last transfusion was suboptimal in the way they transfused it and I didn’t feel too good for a couple of days after that. One other note on my results: I saw possibly the biggest ever drop in my hgb levels. They went from 15 to 9.5 in 4 weeks – 2 days. On average, my hb drops about 1.1-1.3 unit in a week. This was a bit larger drop in hb. I also felt extra fatigued the last 3-4 days before trans.

I did not see my hematologist this time, and just noticed the comment on giant plts now, which is kinda worrying me. I’d appreciate any comments on it.

Thanks a bunch!
SF

Hi SF ,
as far as i know Heart palpitation is a Sign/symptom of Iron overload in heart ...
although i m an old member but i dont know much about interprating/reading reports and kind of stuff, i also dont know much abt thal ...

Best Regards
Take Care
Umair

SF,

As far as i remember you are only on desferal right? i wish you can get L1 too,i know its not approved in US,you don't have any relatives in Pakistan who can send L1 to you,well your doctor will approve it or not that's another problem,but combination therapy is the best,Umair's ferritin levels were pretty bad too but he brought them down with combination therapy.I remember you said you used to have IV desferal too sometimes,that ought to bring your ferritin levels down,why are they elevating then

Zaini.

SF ,
thats absolutely right wat Zaini Sis  mentioned about me , my S.fe was round abt 13200 before starting combination therapy ( last year in may ) , and ow my S.fe only 2060 that is great decrease , Deferiprone + Deferoxamine = Best Combination Therapy ... why FDA isn't approving Deferiprone , i never faced any of its side-effects , it working superb for me , i hope that it will be approved in US soon. ..

Best Regards
Take Care
Umair

Thank you all for your nice words. No worries SF. It is ok to ask you questions. I have been put on this aggressive way of deironing (trying several things) and after almost 6 years we are seeing this drop. I can not stop thinking about. I even found out that I started at the age of 6 years with chelation therapy. Indeed I am almost an employer since 18 year ;). It's a pity I still feel ill and very weak since the tx.

SF,

Some possible causes of giant platelets are vitamin B-12 deficiency, folate deficiency and reticulocytosis. The lower than normal pre-transfusion Hb could be the cause of reticulocytosis, as the bone marrow becomes more active trying to compensate. So, the question is why has your Hb dropped more than normal during this period? Possible reasons are an antibody reaction or infection. This could be a temporary drop if you have had a cold or fever recently. The heart palps are of concern and could be related to iron load in the heart. Faithful chelation is the long term treatment for this, but with heart palps, it is very important that you are taking calcium and magnesium together, along with vitamin D. Calcium imbalance can contribute to palps if you are not also taking magnesium. The two minerals control either side of the heart beat and if you take calcium without magnesium it can lead to palps.

Even though Ferrirpox is available in the US under a special program, it is not available as part of combination chelation. It is only available to those who have shown an intolerance to both desferal and Exjade. This will change once Ferriprox is approved, but until then, you must be aggressive with desferal if you wish to lower your ferritin level. There is some chance you may find a doctor willing to allow both desferal and Exjade together, even though it 9is not officially approved in combination. However, the fact that some patients like Masuma in Texas have been able to use combination chelation with these drugs tells me that some doctors are willing to prescribe this when it is necessary. Masuma had a big scare, finding herself in the ICU with congestive heart failure but with aggressive chelation using desferal and Exjade, she turned things around completely. By the way, she is also originally from Pakistan.

You should continue to use the herbs and also pay special attention to supplements, especially B vitamins, calcium and magnesium, with vitamin D. And of course, you need to get your iron load under control. If you would like, I can also put you in touch with Masuma. She may be able to advise you about the combination chelation.

Update

In February I have had 3 blood transfusions and yesterday I had my first for March. At the second transfusion I had a ferritin of 2386.......now I got a ferritin of 1534!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I still can not believe it. When I found out I yelled through the room of chemo's (and tx). I am so happy. I was very, very ill yesterday, but it's all worth!!!

That is wonderful news, Dore!!! Congratulations!

Umair & Zaini,
Thanks for your replies. Zaini, I used to get IV desferal when I had a port but I got it removed last year in July. Since then, I've been on the SubQ, and it's been hard to comply..

Andy,
Thanks for your explanation on the giant platelets. About the lower Hb count.. I just remembered that about 3 wks ago, I got a MCV4 vaccine that resulted in some fever and chills for 2-3 days post vaccination. Fever would have caused extra hemolysis.

When I go to OCH, I'll ask for L1. I know some thals are on it at OCH. I'll ask Dr. Vichinsky for it. I don't have an appointment set up yet. In the meantime, I'm trying to really be more aggressive about doing desferal than I have been in the past. I'm also thinking about going in for an IV desferal over a weekend in the next couple of weeks.

About Vitamins & Minerals, I have this Calcium + Vit D chewables with the following:

Vit D: 400 IU (100% DV) - in form of Chlecalciferol
Calcium: 600 mg (60% DV) - in form of Ca Carbonate
Magnesium: 40 mg (10% DV) - Mag Oxide and Magnesium Stearate
Zinc: 7.5 mg (50% DV)
Copper: 1 mg (50% DV)
Manganese: 1.8 mg (90% DV)
Boron: 250 mcg

Andy, I'd like to know if this would be something to start with. It instructs to take one tablet twice daily.. That would not give me enough Magnesium. I have looked up foods that have Magnesium but most of the foods rich in magnesium are, unfortunately, also rich in iron (spinach, okra, broccoli, nuts, etc)

I might want to hold off on exjade as I experienced many side effects when I was on it. For now, I'd do IV desferal over the weekends along with SubQ during the week and would also think about combo therapy with L1.