Kindly help with Low Iron question/s for my son

Hi everyone, Andy and Danielle,

So happy to find this site. I am mom to "starboy" nearly 4 years old and unfortunately we have just been diagnosed with suspected Thalassemia. There is a bit of confusion with our test results which I hope to clarify with your help.

We've just begun our journey so we still have more testing to do. Meanwhile, I hope to be able to ask a few questions  to augment my research and doctor meetings.

So far we've done Hgb Electrophoresis, HPLC, a few CBC's, Osmotic Fragility and Serum Ferritin. He has completed an MRI which shows Splenomegaly, Hepatomegaly a distended gallbladder and a possibly unrelated kidney cyst (appears to be Bosniak Type I) which measures 5.9 x 5.9 x 5.7 CM in the lower pole of the left kidney. We are still consulting with the urologist. He also has a right bundle branch block which the cardiologist is interpreting as normal variant at this time since his heart is not enlarged and he is not presenting with the "typical sounds" on auscultation.

Do to his health issues and my own (numerous, auto-immune, pituitary), I'd like to apologize in advance for not being a regular forum person even though I'd like to be as reciprocal as possible. I hope for your understanding and thank you all for any help or guidance you may give us.

Sincerely,

"G"

Hi G,

Do you have the results of the electrophoresis and the CBC? The MRI results suggest thal minor and the blood test results should be able to aid the diagnosis. If you can post them, I can give you my opinion.

Hi G,

Do you have the results of the electrophoresis and the CBC? The MRI results suggest thal minor and the blood test results should be able to aid the diagnosis. If you can post them, I can give you my opinion.

Hello Andy,

First of all, thank you so very much for your time! I'm actually still reeling from a rather surprising meeting with the hematologist and urologist. Here are the info from the tests we've done. (Below, after my novel - sorry)

The hematologist was a great disappointment - I asked him what type of Thalassemia he thought my son had, he says "oh that's just trait". When I said 'but he has a very enlarged spleen, liver and gallbladder', he said "that's normal with thalassemia".

When I asked are there any other supplements or treatments that we can give him to prevent more damage or to improve his growth/health, he said "you're still giving him Folic Acid daily right?". I asked about Hydroxyurea, Wheatgrass, etc. and he said the Hydroxyurea has too many side effects. Just stick to the Folic Acid and that should be fine.

He went on to say (I was freaking inside) "you'll just have to accept that you can't do anything about his condition" - if his Hgb goes below 10 we can begin transfusion therapy, but until then, just do monthly CBC's".

So, it's obvious we had the wrong guy. We have one more hematologist we can check out but it seems I can learn more from this forum. Also, everyone's leaving for Holiday breaks and all his doctors aren't back till January 3rd.

To complicate things further, the urologist feels we need to remove the left kidney cyst (as soon as feasible) but he said that he needed a definite answer on the Thalassemia as it would be  an issue for surgery - also he believes we would have a hard time getting clearance for the surgery at the Kidney Institute without the information.

Starboy's spleen is 9.6 cm in length with the upper limit for his age being 9cm. His liver span is 10.8 cm craniocaudally - upper limit is 9.8. The gallbladder is distended but no calculus or pericholecystic fluid seen.

He weighs 30-31 lbs and has not gained weight since April  of 2011, he also remains at 37 inches and has not grown since then either. He is failing to thrive. He has dark circles under his eyes, he is very pale, his hands, fingertips, ears and lips are very pale. He gets a bunch of small bruises from everyday bumps.

He's had the measles and various sinus infections, UTI's and things of the same nature since age 2 but it has increased in frequency this year when he stopped drinking his Silk with Vitamins. He just decided at age 3 that he no longer wanted to drink milk. He consumes a very healthy amount of yogurt and cheeses so I'm not too worried with that aspect.

We had just been giving him a multivitamin and now Folic Acid since all this went down. Of course now that I've begun to read various posts on the forum I will be adding supplements. I will be calling the Dr. Wheatgrass distributor here tomorrow and I've obtained Retinol Palmitate 25,000 IUs but not yet begun and just added ascorbic acid with zinc (aa 100 mg per 5 ml/ zinc at 27.44 mg per 5 ml) and B1 B6 B12.

I personally take 50,000 IU of Vitamin D (plus all other vits) per week but they don't have a syrup version and the capsule is too large for him to swallow. I would appreciate if you could direct me to any additional threads I could follow regarding supplements.

In addition, we've exhausted the testing capability of the University here - they're the only ones in the country that does HPLC and there is no further testing available. I'm currently looking for the closest comprehensive testing center to us here in the Philippines. It seems we might as well go to India?

Starboy and I have to leave the country to refresh our visas anyway - so the trip will be dual purpose. Also, if you or anyone can direct us to a testing center in So. California so that my husband and adult daughter could possibly do theirs there before they come here for a visit or should we go ahead and spend the money and all 4 of us travel to India to do the tests there? My daughter is just a half sibling however. We have to do the tests no matter what so that we'll know exactly what we're dealing with. It's just a question of logistics and costs at this point.

We are not rich, but we will gladly spend everything we have for our boy.

My goodness I have written so much, I hope I don't give you a nose-bleed.

Tests:

Hgb Electrophoresis - HbA - 97.5%, HbA2 - 2.5% - likely Alpha Thalassemia Trait


HPLC  - Suspected Beta Thalassemia

HbA2 - 2.5%

HbF - 1.1%

Unknown 1 - 0.2 %

P2 - 3.5 %

Unknown 2 - 0.5 %

P3 - 3.7%

Unknown 3 - 0.2%

Ao - 88.4%

*(My HPLC numbers are exactly the same, shouldn't they be slightly different?)

CBC - (The numbers fluctuate from week to week/lab to lab) here's just 1 from October that was used for the HPLC correlation. Another CBC was done today and should be available by tomorrow.

Hgb            106   (115-135 g/dl)

Hematocrit         0.32   (0.34-0.40)

RBC              4.12   (3.9 - 5.3 x 10^12/L)

MCV            77.00   (75.00-87.00 fL)

MCH            26.00   (24.00-30 pg)

MCHC         0.34   (0.31-0.37)

RDW            14.90   (11.50-14.50)

WBC            8.40   (4.50-10.00 x 10^9/L)

Platelets         570   (140.00-440.00 x 10^9/L)

Serum Ferritin             23.75 (3.30 - 127.00)

Osmotic Fragility          INCREASED (suggestive of spherocytosis)


*Anisocytosis
*Hypochromic

Osmotic Fragility       INCREASED  (spherocytosis?)



Thanks again! Please advise if you need anything else.


With my utmost appreciation,

G

Hello everyone,

I'm posting here because it seems like my son IS thal minor (I introduced us here http://www.thalassemiapatientsandfriends.com/index.php/topic,4294.0.html).  

I hope someone can help with my question/s or at least direct me to the right thread? Thank you in advance for your help.

We are meeting with the new hematologist again tomorrow to discuss how to approach the low iron. My son is having surgery (remove 6cm kidney cyst) the week of Jan. 24 so just concerned about his levels. The new guy is so much nicer and more knowledgeable and ordered the TIBC whereas the old doc said it wasn't necessary cause of Serum Ferritin was already showing he WASN'T iron deficient. He even knew about wheatgrass, etc. so was very supportive when I said I wanted to try supplements. He also said he would investigate where we could do DNA testing (maybe HongKong instead of India). If anyone can pipe in on that, would also greatly appreciate it.

We just met with the new hematologist Friday, got the results of TIBC tests and new Serum Ferritin just now. Also my son, weirdly (last 7 illnesses now in 6 months) has an increase in Hgb when he has a fever. Does anyone know why this happens? His normal levels seem to hover at around 10.1-10.6 but when he's sick it goes up to 11+? Just happened to notice this and confused. He has a fever of 38.7 for the last 2 days and had vomiting but is starting to be better now. Just mild fever this morning.

Should I anticipate an adverse reaction to the normal iron supplementation and ask directly for injections? We don't have a large margin for error because of the upcoming surgery... My husband's sister who is Alpha Thal trait (just found out) is averse to iron also.

I've attached the results of the tests. His previous Serum Ferritin was 28+.

 Hope everyone is having as great a holiday as possible.

All the best,

G

Hi G,

I have merged the two topics under thal minor.

I have a question about the prior post. There are two sets of Hb percentages. One includes no HbF and the second includes 1.1% HbF. Also, both "suspected beta thal" and "likely alpha trait" are both mentioned. Do you know which one is correct for your son? The normal HbA2 is unusual for beta minor but if iron deficiency was also involved, it would lower the HbA2 level. If 1.1% HbF is present, it would increase the likelihood of beta minor. If none is present, along with the normal HbA2, alpha trait might be expected.

Hgb Electrophoresis - HbA - 97.5%, HbA2 - 2.5% - likely Alpha Thalassemia Trait


HPLC  - Suspected Beta Thalassemia

HbA2 - 2.5%

HbF - 1.1%

Unknown 1 - 0.2 %

The iron tests seem to confirm iron deficiency, but iron supplements should always be given with caution with thal minor, but a one month trial is appropriate. I would suggest asking the doctor if iron injections might be a better route than oral iron, as oral is known to cause problems for many people. If iron does not raise the Hb, further evaluation of thalassemia trait should be taken. A DNA test may be required. Was he sick when the iron tests were done?

The reason for the higher Hb when ill may simply be the reduced fluid volume in the blood as a result of vomiting and/or lack of hydration due to intestinal illness. When the fluid volume in the body is lower, the hemoglobin percentage will rise as a percentage of the blood volume, but the actual amount of hemoglobin molecules in the blood haven't changed.

Hi Andy,

Thanks so much for replying and so quickly! Merging the topics really helps - thanks!

The Electrophoresis was done initially and the HPLC was ordered to confirm. That is the reason why I was confused also because of the HbA2 range and the lab comments. However, this was before we had TIBC (which the original hemo should have ordered). Now that I've read your comment it certainly would point towards the low iron level artificially lowering the HbA2. I guess we could retest again in the future or just do DNA.

We would really like to do a DNA test but because it would be out of pocket, we're hoping to do it somewhere here in Asia instead. We're California residents but staying with family as we go through all the health issues cause it's just not affordable in L.A. right now and we got priced out of our insurance due to my health issues [they keep raising premiums till you give up  ].

Just not sure which exact type to request. My husband is pure Welsh (at least 7 generations), and my paternal grandparents are each pure Dutch and German (at least 6 generations), my maternal grandfather is from Valencia, Spain (at least 7 generations) and my maternal grandmother is Filipina (goes several generations back - but highly doubt if she's pure native Filipino). So not sure if targeted analysis would work as the kits only cover certain groups, right?

As far as the Hgb rising during illness - I only noticed because I was compiling his folder and realized that the times he was sick with fever, cough, cold, measles, uti, stomach flu, etc. he had those CBC's with the Hgb in the 11 range. Just made me curious as from what I've read, it's supposed to go down when he's sick. But he usually hovers at 10.0 +.

Ex:  (sorry not full CBC)  measles,   RBC 3.7, WBC 16.4, HGB 11.4, HCT 0.35, Platelets 355

However, I just found labs for when he had diarrhea/vomiting

Ex: RBC 3.5, WBC 4.6, HGB 10.2, HCT 0.31, Platelets 266


(so, yeah, I'm just confused still)


He's only been on folic acid since mid October when we found out about the Thal.

On Friday, he wasn't sick yet, we did this TIBC, SF and CBC, clotting test, then Saturday morning, he vomited a couple of times and had the fever, now he just has a runny nose and seems to be getting over a short bug. So he wasn't obviously sick then to me but it may have already been in his system.   

I will ask about the iron injection tomorrow for sure and share whatever the doctor says then. I'll bring up the increased HgB also to see how he answers that.

Btw, I've tried to call the distributor of Dr. Wheatgrass here a few times already and the company told me the individual listed is the one to contact. I've sent him 2 messages and still have no reply so...


Anyway, that's all I've got for now and my husband sends you his most sincere appreciation as well as I shared this site/thread with him.

Thanks again from us all!

G