Beta thal minor - problems donating blood?

Hello all,
So glad to find all this great information in this forum.  I am curious whether many beta thal minors here donate blood?  I tried to donate blood for the first time ever last week.  In the few days before the blood draw, I made sure to drink lots of water each day, plus eat foods with lots of iron.  I wasn't totally sure my hemoglobin levels would be okay to donate, but I made it a point to not be dehydrated so my hemoglobin levels would not be artificially elevated.  Everything was going fine, the blood was flowing out well, then it stopped.  I had almost filled the bag, but not quite, so of course, they couldn't use it.    The phlebotomist told me I just didn't drink enough water the day of the blood draw (and yet, the Red Cross site says to drink an extra 16 oz of fluids the day of - I definitely drank more than that).  Has anyone ever experienced this, where their blood stops coming out???  I've asked around and other people who have donated said they've never really heard about this happening.  I am curious as to whether this may be connected to my being a beta thalassemia minor...

Also...no one on the Red Cross bus I was on had ever heard of beta thalassemia.   

I'm surprised they let you donate because normally they do a quick check of your hemoglobin before the draw; if it is too low (which it almost certainly would be with a b-thal minor), they won't let you donate at all.  I've never actually tried to donate as a result of this, so I wouldn't know about your experience of not enough blood coming out.  Good luck finding out!

Sara

They did check my hemoglobin level before the draw - it was 13 (the minimum is 12?).  So it was a good day, at least in terms of that.  The guy tried to convince me to come back another time to donate, but to drink more water first (he suggested drinking 76oz of water the day of the donation?  ).  They had already taken out almost a pint of my blood so I was told that I'd have to wait 56 days to try again.  I am a little iffy but at the same time, I do want to try again to see if I'll be more successful if I actually drank that much water just before the blood draw.  I didn't feel too awful after the blood draw, so I think it would be great if I could donate blood somewhat regularly.

Hi Sara,

In addition to being well hydrated, I would suggest taking natural vitamin E regularly (I actually suggest this for all thals, minor through major). It is a strong antioxidant but is also a mild blood thinner and this helps to counter the tendency towards clotting that occurs in thalassemia due to the small red blood cells that are produced as a result of the thal gene. I suspect that this is an issue since the blood flow just stopped while you were donating blood.

My father is a thal minor and he regularly donates blood (about once every two months), the minimum hb required for donation by Canadian Blood Services is 12.5, never heard of this problem; I agree with Andy though, it could be the hypercoagulable state of thals, this happens to me often when I have long blood tests (filling multiple vials), but when it does they just seek another vein and poke me again

When I was not aware of my thal minor status, I have donated blood just twice. But never faced this kind of problem. The rest of the times that I had tried, my Hb never met their expectations and standards-I always hated the site of the copper sulphate beakers which would pronounce me not eligible to donate blood!

Andy has already explained it and I guess, otherwise you could just say it was a 'bad day' for the attempt anyways!
Wish you better luck the next time you go for it!
Madhavi

Hi Sara,

In addition to being well hydrated, I would suggest taking natural vitamin E regularly (I actually suggest this for all thals, minor through major). It is a strong antioxidant but is also a mild blood thinner and this helps to counter the tendency towards clotting that occurs in thalassemia due to the small red blood cells that are produced as a result of the thal gene. I suspect that this is an issue since the blood flow just stopped while you were donating blood.

Hi Andy,
Thanks for the suggestion.  How much would you recommend for vitamin E dosage?  Also, coincidentally, I took some aspirin that day (not thinking of it as a blood thinner, just needed some).  Do you think that could have been similar to the effect of vitamin E thinning my blood?

My father is a thal minor and he regularly donates blood (about once every two months), the minimum hb required for donation by Canadian Blood Services is 12.5, never heard of this problem; I agree with Andy though, it could be the hypercoagulable state of thals, this happens to me often when I have long blood tests (filling multiple vials), but when it does they just seek another vein and poke me again

I told him to poke my other arm but he told me he couldn't do that.  ;)  Isn't the hypercoagulable state mostly with majors/intermedia from what I remember seeing before?  Or is that the general case for all people with thalassemia?  I've only just started researching thalassemia, so there are a lot of things I need to catch up on!  I spent 27 years of my life not knowing I even had this!  My mom has known since I was a baby, but the doctors told her it was nothing to worry about so she never bothered to mention it. 

I don't know why he could not do that; unfortunately I have never donated blood, my hb has never been above 80.

There is no scientific literature suggesting a hypercoagulable state in thal minor in addition to majors and intermedias, on the contrary there is literature suggesting an advantage to thal trait in the form of lower risk for high blood pressure, heart attack, stroke, and coronary artery disease (all conditions associated with hypercoagulability)
http://www.ncbi.nlm.nih.gov/pubmed/7741142
http://www.sciencedirect.com/science/article/pii/S0011393X05806733
http://www.springerlink.com/content/pq71n0778807r47x/
http://www.medical-hypotheses.com/article/S0306-9877%2802%2900264-5/abstract

On the other hand, a hypercoagulable state is plausible because the bone marrow makes more rbcs to compensate for the anemia and most of those extra rbcs are not usable, they just thicken the blood and die faster than healthy rbcs, the increased heamolysis creates oxidative stress and depletes nitrous oxide; there are numerous anecdotal accounts on these forums of frequent miscarriage in thal minor women.

Anecdotally, the alleged protection against high blood pressure hasn’t been the case for my father, he is on beta blockers, but the only other thal minor I’m aware of in my family (my grandmother) seems to have gotten all the advantages, she is about 93 and on no medications.

On the other hand, a hypercoagulable state is plausible because the bone marrow makes more rbcs to compensate for the anemia and most of those extra rbcs are not usable, they just thicken the blood and die faster than healthy rbcs, the increased heamolysis creates oxidative stress and depletes nitrous oxide; there are numerous anecdotal accounts on these forums of frequent miscarriage in thal minor women.

This is the key to understanding the blood of thal minors. It is not a typical hypercoagulable state that has platelet involvement. It is more or less the "clutter" caused by small, irregularly shaped red blood cells, the products of hemolysis of these cells and the unmatched alpha globin chains which form tetramers. This does seem to become more of a problem in some thal minor women during pregnancy, but also would explain why the blood stopped. I think the problem with saying minors don't have this or that is that a majority of thal minors truly are fairly asymptomatic and don't report the same thing that the symptomatic minors report. Naturally, at this site we will see far more symptomatic minors but this cannot be interpreted as meaning that all or even most thal minors will experience these issues. This is why I think studies need to be done of symptomatic minors only in order to get an accurate picture of exactly which symptoms can be attributed to thal within the symptomatic population.

Thal minors usually do have lower blood pressure, but diet and lifestyle also play big roles, so it is no given that a thal minor will have lower BP. The lower BP has often been thought to be the reason thal minors have lower rates of heart attacks. A friend of mine who is a thal minor managed to negate the low BP with a diet full of salt and fat and a terrible temper.

My doc and my Haematologist have advised me to not donate blood  - regardless of what my Hb count is. I think for me, its because i have symptoms, and original doc had said thal minor has no symptoms. Im also Asthmatic, and my Hb is rarely in the donatable range, so even though i would love to help people i cant

The 2 times i have had 9+ vials taken in one go, i felt like death for 2 days ( first time was to help someone at uni for their grad project, 2nd time was cos of doc orders), so unless a doc orders it, im not giving blood for anyones uni stuff ever again.....

And sometimes when i give blood for samples for testing it slows down a fair bit, or is stubborn to get started to flowing.

My doc and my Haematologist have advised me to not donate blood  - regardless of what my Hb count is. I think for me, its because i have symptoms, and original doc had said thal minor has no symptoms. Im also Asthmatic, and my Hb is rarely in the donatable range, so even though i would love to help people i cant

The 2 times i have had 9+ vials taken in one go, i felt like death for 2 days ( first time was to help someone at uni for their grad project, 2nd time was cos of doc orders), so unless a doc orders it, im not giving blood for anyones uni stuff ever again.....

And sometimes when i give blood for samples for testing it slows down a fair bit, or is stubborn to get started to flowing.

I actually have yet to speak with any doctor about this.  I really need to do that, just to see what the doctors around here think (if they even know what it is!).  When you say you have symptoms, which ones are you talking about?  I wonder if I shouldn't be donating blood?     After I lost all that blood from my botched donation  I didn't faint or feel sick really.  Maybe a little bit lightheaded? but honestly -- feeling that way is not abnormal so I wasn't entirely sure if it was from the blood draw.    I did kind of feel like for the next week/two weeks that I was getting dizzy/lightheaded every time I got up from a sitting/laying/kneeling position.  While that would normally happen occasionally, it didn't happen to me every time, so it made me wonder if this was related to my blood "donation"?

My husband told me that I just need to exercise more to raise my blood pressure.  I'm not an athlete but I am not a sedentary person (he just has extremely high standards of fitness).  Not to mention, I did not get dizzy every time I got up PRIOR to the blood draw, and my exercise levels have stayed the same in that time period.  Just another person who doesn't really understand what it's like.   

for me, donating upwards of 4 vials gives me symptoms that are worse than day to day tiredness and dizzyness. I regularly get lightheaded and dizzy, exercise intolerance, get super pale when nauseous, dizzy or in pain- health care people are weirded out by it. Also get nosebleeds easily and regularly, bruise easily, was a baby that failed to thrive+wouldnt eat and was crazily pale. So for me when i say feel like death, im talking utterly exhausted, that seems excessive for the amount of blood taken-ie i know people lose conciousness from massive blood loss, and while my symptoms are not that extreme, the amount of blood is nothing compared to that yet i feel absolutely horrid and can sleep for days.
Combined with the asthma, even though my Hb hasnt gone below 12, i know i would be greatly effected-more so than my day to day symptoms. Curious about pressure though, mine is always a bit high- for as long as i can remember, its rarrly normal.

Bruising can be a direct consequence of vitamin C deficiency and is easy enough check to see if this is the culprit. Take 500 mg C twice daily and see if the bruising is less. It may also be a factor in the nosebleeds, as C strengthens capillary walls.

I just wonder if our blood is good for the others. Would it be stable enough (namely the rbcs) for storage and transfusion and wouldn't it be dangerous for seriously traumatised patient to depend solely on it? Moreover it's Hb content is on the low limit in most cases.