Thal Minor Receiving IV Iron Infusions - new to all this, please help!

Hi, all! I am new to the site and really to trying to learn about my thal minor. I am not even sure at this point if I have beta or alpha. I am going to ask my hematologist to check for me at my next visit. I joined this website because last week, my hematologist told me I need to get Iron IV Infusions for the next 8 weeks. I have been going to the hematologist because about a year ago I had a pulmonary embolism after the birth of my daughter. I take coumadin and a baby aspirin every day. They just started trying to wean me off of the coumadin so my dose just changed last week from 8.5mg per day to 5mg per day and my target range is now 1.3-1.8. The reason the doctor wanted me to start the iv iron is because my hematocrit was low so they ran an iron panel which showed low results. My hgb is low, hct is low, mcv is low, mch is low, mpv is low and rdw is high. My Iron Serum is low and saturation is only 5%, additionally, my Ferritin Serum is low. All of this is new to me so I am not sure what it means and from what I have been reading, it seems like us thal folks shouldnt get iron because it could cause iron overload. I am just looking for some help to see if I am being treated correctly or at least to know what questions to ask when I go back this Friday. I really like my doctor and know he wants to do what is best for me; I just dont understand enough of this stuff to know what questions to ask. Thanks in advance for helping me with this new and overwhelming situation!

Hi Trista and welcome to the group,

Although it is true that thal minors are often erroneously given iron when they do not need it, some thal minors will also have iron deficiency, just as non-thals. Your doctor has done the proper tests and the results do show that you are iron deficient. Iron supplements are necessary at this point and hopefully your doctor can find a supplement that is not hard on your digestive system. Trust your doctor on this as he has run all the correct tests and I believe as you have said, that he is a good doctor.

Hello Trista,

I hope Andy's post will help you through,if possible, do post your test results here,

 

ZAINI.

  So, I went for my third infusion today and my labs are still really confusing to me. They are running tests for Vitamin B Deficiency, Reticulocyte Count, and checking for occult blood in urine & stool. So, here are my labs - just curious if anyone might have idea of what all of this points to as a cause for why I would be iron deficient when I really have never had this problem in my life up to this point.

Date   Norm Low   Norm High   22-Oct   26-Oct   2-Nov   8-Nov
WBC   4.50   10.50   5.70   5.30   5.50   6.20
Ly %   20.50%   51.10%   39.10%   43.00%   43.30%   23.90%
Mo %   1.70%   9.30%   2.70%   3.10%   4.40%   3.80%
Gr %   40.00%   60.00%   58.20%   53.90%   52.30%   72.30%
Ly#   1.20   3.40   2.20   2.30   2.40   1.50
Mo#   0.10   0.60   0.20   0.20   0.20   0.20
Gr #   1.40   6.50   3.30   2.90   2.90   4.50
RBC   4.00   6.00   4.79   4.76   5.01   4.71
Hgb   12.50   15.00   11.20   11.20   10.90   11.20
Hct   37.50%   46.00%   33.90%   33.50%   36.70%   35.80%
MCV   80.00   99.90   70.90   70.50   73.20   76.00
MCH   27.00   31.00   23.40   23.50   21.80   23.70
MCHC   33.00   37.00   33.00   33.40   29.80   31.20
RDW %   11.60%   13.70%   16.60%   16.60%   17.70%   18.90%
PLT   150.00   450.00   329.00   329.00   333.00   285.00
MPV   7.80   11.00   6.90   7.00   6.70   6.80


Thanks in advance for your insights...
Trista

Hi Trista,

I don't know everything about your tests but it is very clear that your hb is quite normal,or i would say 12.5 ia a good hb ,definitely above normal ranges,and your HCT is also good,I don't know why they are giving you iron infusions  ,i think you should ask your doctor this question.

ZAINI.

Thanks so much for responding to my post. It is so awesome to see that you really care about all the people on this site.
The first two columns are just the low and high ranges of normal for the test. my results start with the 3rd column and go to the right from there. Sorry for the confusion....I am hoping that maybe this week they will have some results from some of the other test they have run so I can figure out why this is happening.

Hi Trista,

Sorry i got confused with so many columns,but still i'd say that hb of 11.2  is not bad,at least not bad enough to get IV iron infusions,you should seriously think about getting your ferritin level checked.Andy !!! any thoughts?

ZAINI.

In her earlier post, Trista did mention very low iron readings which indicated iron deficiency. Her Hb is normal for a thal minor but the iron levels were quite low.

The reason these other tests are being run is to see if there any be other factors such as internal bleeding or B-12 deficiency at work here. The tests are routine and nothing to be alarmed about. Hopefully, they will help clear things up.

I am going in on Thursday for another IV & hopefully they will have the results of the B vitamin bloodwork & reticulocyte counts. Will keep you posted....

Well, I am back with results of some tests...
My reticulocyte count was 1%; the normal range was .5-3% so I guess that is good.
The B12 was at 467 (norm range of 211-911)
serum folate was 13.3 (norm range was anything greater than 5.4)
The B1 (Thiamine) Plasma was 7.7 (norm range 4-20).
Vitamin B6 was 6.2 (norm range 2-32.8).

My hematacrit went down again last week & again this week. I am down to 34.1% which is almost as low as the day I started the infusions. I dont understand how/why this could be happening. This week they decided to take some blood to test for Thyroid functions & there was a note in my chart from the doctor to let him know if my heart rate is lower than 60 when I come in for infusions. So, it seems to me just more of hurry up & wait 

Hope everyone has a Great Thanksgiving!!!!!

Hi Trista,

Welcome to the site. I see you are from CO as I am. My wife is Thal Inter. and we had a wonderful baby boy last Christmas. The doctors we saw were all very caring BUT, 2 different approaches from 2 different Hematologists, which led us to always follow up with our own research.

Good luck.
Bharat

Thanks for your words of wisdom & congratulations on your beautiful baby :smile

Hi, all! I am happy to report that after many weeks of these infusions, I made it back into the normal range for hematocrit and hemoglobin. They were 37.6 and 12.6 respectively...Next week they will test to see if my stores have been replenished. Several of the other things on the CBC are still out of whack but I am just so happy to have some energy again They still don't quite know what caused all this but I go in for a colonoscopy and endoscopy at the end of the month. I also met with the gynecologist who said I should get an ablation to help my periods go away as he thinks this is probably the cause. Whatever the case, I am just so thankful to be feeling like my normal happy energized self again. Hopefully, I can sustain my iron levels on my own so I dont have to do IV's ever again. Not that they were that bad, it is just a lot of time out of your week when you are full time employee, wife, mother to 2 small girls and active member at church. Praise the Lord that I am feeling better & thank you Jesus!!!!

Well, I was only in the normal range for 2 weeks & then i went back down... The other weird thing is that my granulocyte counts are always elevated even though my white blood cell count is in the normal range. Anybody have any ideas on why this might be? I had the colonoscopy/endoscopy last monday & have not heard any results. They did take 4 biopsies & said that my small intestine looks "scalloped", whatever that means. They sent me for x-rays on Monday so we are waiting on those results as well.
My hemoglobin is staying up (around 12.5) but the hematacrit went back down to about 34.8. It is so frustrating to have these issues and not have a fix for them. If anyone has any insight into the high granulocyte count, I sure would appreciate it.
Thanks
Trista

Scalloped small intestine is sometimes associated with celiac disease, which is intolerance of the gluten found in many grains. The high granulocyte count can be caused by many things including infections, allergies and certain medications.

http://www.labtestsonline.org.uk/understanding/analytes/differential/test.html#what

Neutrophils can increase in response to bacterial infection, inflammatory disease, steroid medication, or more rarely leukaemia. Decreased neutrophil levels may be the result of severe infection or other conditions, such as responses to various medications or chemotherapy.

Eosinophils can increase in response to allergic disorders, inflammation of the skin, and parasitic infections. They can also occur in response to some infections or to various bone marrow malignancies.

Basophils can increase in cases of leukaemia, long-standing inflammation, the presence of a hypersensitivity reaction to food, or radiation therapy.