Hb=9.6 :(

Hi everyone.  I was diag thx to my daughter's peds.  She tested her and found the BThal.  After years of iron supplements that went nowhere and never fixed my unknown anemia...

10 years after my diag I've been through a rollercoaster.  Today I went to the doc and my Hb was 9.6.  Mine usually hovers around 10.5 +/- .4.  I'm miserable, sleepy, tired and just feeling awful.  Everything hurts, my joints, my head.  I have tinnitus and awful allergies.  My neck constantly pains me, my eyes have good days and bad.  Not to mention my achy joints and muscles.

The last two weeks I've felt utterly exhausted.  And I can even tell when I'm getting my period...I nap the day before.

I went from being this hyper girl that played sports and joined the Army to a lethargic mother of 2 having a hard time getting through the day.

I feel like I've run marathons every day.  Should I get genetic testing for intermedia?  Seems to me intermedia folks have their Hb lower than that...and I've never gotten a transfusion.

I'm only 30...why am I feeling so awful? 

Hi,

I hope you are feeling much better these days. I am a 31 year old, intermedia. As I read your post, I related to many of the symptoms you shared, as well as the overall lack of energy. I do not get transfused and my Hb ranges usually in the mid-80's.

I think genetic testing is a great idea. It may put your mind to ease. Also it would be great for the kids to be tested in the future. I waited getting tested until I was ready for it (in my 20's) and was in a serious relationship.

I try to make the most of life. There are def. days when I feel exhausted and wiped out. It is normal, esp. if the Hb is lower than the normal range.

Well, I hope you will maintain a positive outlook. Life is really precious.

Hi KitKat

Thanks for the reply.  I'm still exausted, but waht I hate is that the docs keep suggesting I'm depressed...once again she prescribed me an antidepressant under the guise that it would make me perk up.  When I googled Cymbalta it turned out to be an antidepressant.  I didn't get the prescription filled.

What helps you perk up with your intermedia?  My doc suggested birth control to shorten my periods...I'm not on them now.

Hi drdaco,

It's not abnormal to have hb as low as 9.6 while being minor,i am a thal minor myself and my levels are almost always low,there is a simple test called hb electrophoresis which can tell you about status of your thal. Genetic testing is also a good idea.the symptoms you wrote about ,are the symptoms most of thal minors complain about,i also go through my bad days,tired of being tired,wanting to nap all the time,pain in neck.I am no doctor,but i think continuously low hb can lead one towards depression,as supply of oxygen lowers to the whole body.
I think it's a bit unlikely that you are an intermedia coz as you said you have two kids,were you transfused during your pregnancies? i think an intermedia will need transfusion while pregnant.

What can help you perk up? Start taking folic acid daily and religiously,vitamin E will also help,Wheat grass is a very good option for people who feel lethargic most of the time,it will give a lot of energy with out any side effects,as it's not a medicine but a natural supplement.

Hope this helps .

Zaini.

Great tips.  No, no transfusions...almost did the second time, and they kept me an extra day with the baby but since they knew I had Thalassemia I opted to wait and see if my Hb would go up and we left it at that.

I was wondering...is it possible for a minor to have iron poisoning?  After I started taking a multi vit. that contained a daily 50% iron I noticed that 2 months later my hair began to fall out.  I wasn't sure it was that or something else...

but I started counting my iron intake, and between my multi and my cereal in the morning plus my obssession for leafy green veggies and protein I figures I was getting at least 200% daily value of iron. 

I also read that your body can't get rid of it?  Because for years before my diagnosis I took iron supplements because docs thought i was anemic due to low iron.  Does it build up?

My doc thinks I don't have it.  And my blood showed an Iron (total) of 115 and Iron Binding Capacity of 372 back in January BEFORE I started taking a multi and changed my diet to a healthier one with more veggies and fortified cereals.
My %saturation was then 31%.

She's doing a new workup with a ferritin panel this time.  I show some symptoms of iron poisoning...including trembling, dark armpits, pale skin and bowel problems.

Any ideas ? 
Since the birth of my last daughter 3.5 years ago I've started a downward spiral of just feeling awful and exhausted.

Thanks again for all of your comments...even though I've known about this I assumed like the literature said that I would be asymptomatic...but things have gotten worse and I can't help but think this is Thal related.

I can't imagine how you Itermedia/Homo folks feel   hugs to you all.

Hi drdaco,

I intend to come back with a little more when I get some time but yes, taking iron long term can cause problems if it isn't needed. Iron studies, which are a group of iron tests and require only some blood to be drawn, can determine your actual iron levels. I would recommend getting them done because excess iron can cause damage to the organs.

Hi drdaco,,

With an Hb of around 10 you wouldn't be considered intermedia, but unlike what you may read about thal minor, minors can have many health issues. Your iron levels are not above normal but it would be helpful to also see serum ferritin results. You are anemic with an Hb of 10 or lower but this does not look like it could be iron related so you are wise to avoid iron supplements. If it does turn out that your iron levels are a bit on the high side, you may want to try some natural chelators like IP6 or green tea extract, both of which are inexpensive and easy to take supplements that are also powerful antioxidants. I would also recommend daily folic acid, B complex, vitamins D & E and possibly wheatgrass tablets or extract and resveratrol.

If your change in health has been sudden, it may not be related to thalassemia. If it has been a steady downward trend for awhile, it may likely be thal related. Continue with the improved diet and consider starting a regular program of supplements.

Just got a call from my doctor and my Hb is still 9.6 and my ferritin is 56 ng/mL and a 32% saturation.

I'm seen by a PA.  What should I give her to read or let her know what to look for or test?  I still feel awfully tired and an overall malaise.  Worse is my joints..my fingers hurt and my back went out from playing tennis but there was no trauma...I just felt bad.

My folic and B panel came back great.  It's reports like these that make me doubt myself that maybe there is nothing wrong with me and I'm just complaining.

My health has been declining since my teens.  It started limiting my sports then how much and types of exercise and now it's limiting me at school because I'm exausted.

Hi drdaco,

I have some suspicion that there is a common problem among thal minors that accounts for many of the symptoms that are repeatedly reported here, as the symptoms are so often the same. Many of the symptoms are those of pulmonary hypertension (PHT) which is known to be prevalent in thal intermedias and to a lesser degree in majors and is related to several factors, including long term oxygen deficit. Even mild cases of PHT are known to cause symptoms. Minors often experience lifetimes of significantly low Hb and it seems quite possible that PHT may be developing in minors as they age. I have asked several minors to see about getting tested for mild PHT but so far have not heard of anyone doing so. If I can find any doctors willing to talk about thal minor at the Singapore conference, I do intend to bring this and other issues up.

I think it's broader than that... I found a paper relating BT carriers with symptoms resembling pseudo-PXE.
(Ringpfeil. Selected disorders of connective tissue: pseudoxanthoma elasticum, cutis laxa, and lipoid …. Clinics in Dermatology (2005) )

I was diagnosed, because of my joint laxity, with Ehlers-Danlos...not diagnosed genetically tho.

Sure I bruise easily and my skin is sorta flexible, and my shoulders pop out... but I think this may all be related to problems with connective tissue (CT) due to BT.  If BTs have CT problems this could show up as a problem with PHT also.

If we could get the BT folks to test BTM, BTI and BTm people for issues with connective tissue.  It would explain a lot, including the easy bruising.

There is another paper talking about exactly this in Monkeys where they introduced bovine collagen immunization.  This collagen-induced arthritis then induced anemia.
(Uchiyama et al. Anemia in monkey collagen-induced arthritis is correlated with serum IL-6, but not TNFα. Rheumatol Int (2008) vol. 28 (9) pp. 879-883)

To me it seems the two are intimately related.  If the difference between a symptom less carrier and those of us carriers and intermedia's that show symptoms maybe a co-existance of connective tissue genetic trait that exacerbates the anemia.
This has been shown in other cases that couple collagen-anemia:

"Cases of rheumatism and collagen disease show anemia with chronic diseases (ACD)"
http://sciencelinks.jp/j-east/article/200101/000020010100A0491921.php

Hemolytic anemia caused by collagen related disease as in Lupus.
http://bidmc.harvard.edu/YourHealth/ConditionsAZ.aspx?ChunkID=100693

Here is a paper that talks about platelet interacting with collagen and collage receptors in the blood.
http://www.bloodjournal.org/cgi/reprint/103/4/1180.pdf

Yet another paper cites collagen as a marker for Sickle cell health since Type I collage is synthesized by osteoblasts  (made in the marrow and periosteum, or surface of the bone)...but if our marrow is already compromised and anemia prevents periosteum from receiving nourishment, then collage and bone growth/repair ought to be compromised...
http://cat.inist.fr/?aModele=afficheN&cpsidt=2124800

I am but a PhD graduate student in engineering... and though I've taken some bio classes and my research involves simulation of molecules, I'm no PhD or doctor.

But from reading a few papers it sure seems to me that anemia and collage health go hand in hand and is much more synchronous than the docs caring for us have been taught it may be.

Who are the main PhD's and MD's researching thalassemia?  Can't we talk to them?  Can't we do our own study interviewing patients of thalassemia and their complaints?

I should note there are over 20 types of collagen... so interaction with one type does not indicate deficiency in others.