Ride With Thal: Tea & High Counts

I was a part of a study which was published January 4, 1979. I’ve attached for easy viewing.

In 1979 I was 14 years old and participated with five other thalassemia patients in a study conducted out of Rochester, NY. I really don’t remember much of why or what the outcome was. As a kid with a chronic illness since birth you tend to not ask many questions. You just kinda try to do what other kids do. The more tedious daily worries like staying alive are solely on the shoulders of those who love and care for you.

I wasn’t told much about the study going into it. But I had been poked, examined, and tested all my life so I really didn’t give it much thought. I was told it was a research study and we would need to drive out to Rochester (NY) up to several times a week for many weeks. And, this was the big AND. AND I could not chelate during this time. We called it using the desferal. Well, for this sweet 14 year old this was like a vacation of a lifetime. Time off from school and no DESFERAL! NO needles every night, no itchy belly from the chelation! Every night free without being attached to that dreaded pump! At this time the pump was the size of a small coffee pot!

I remember driving out as a group the first time. The head of hematology took us out the first day. We piled into the doc’s family truckster. If you’ve seen Family Vacation, that’s what I remember his station wagon to look like. On the way out there was a loud explosion. Doc handled it calmly and pulled over to find a hole in the sidewall of the front tire the size of a grapefruit.

Following the initial visit I do not remember the doctors continued attendance. However we did continue to go as a group. Sometimes half at a time depending on schedules.

This is what I remember of the tests. We arrived early in the morning following an overnight fast. We were given plane, I think two hamburgers (at least one) from the local BK diner (BurgerKing). Then a laboratory type person suited up in a blueish suit. You know, the kind you see in the movies. Only minus the backpack style oxygen tank. She’d (always a girl) be carrying a led container with the standard radioactive tape and markings on it. There was a syringe for each of us. She’d squirt the contents of the syringe on to a tablespoon of applesauce. Then, we’d eat it.

I’m not sure if it was the same day or the following day but following the apple sauce, at some point we also drank plain black hot tea. Then we each individually had to sit for several hours in the vault. If you’ve ever been in a bank vault or seen one in the movies that’s what this was. The inside of this vault was about 8x12 with a dental type reclining chair. I vaguely remember not being able to have any metal on us. Like belts, zippers, jewelry. Once inside on the chair reclined to a “comfortable” position, the huge metal door was shut. There was light. And they would pipe in music. We were encouraged to bring our favorite albums and books. This is where we’d sit for several hours. Alone and extremely board. I learned to come tired. Sleep was the best passer of time. I'm still not sure how the vault worked but somehow it was connected to a machine able to measure the iron in the body. The radioactive juice withing the syringes had something to do with it.

I still see and am close to one of the other contestants. She is my age so we have a lot in common. We occasionally think back to this study and wonder why our parents would allow us to be radiated. We always come to the same conclusion. They were just looking for someone to cure their child. Or at least something which would allow their child to live. As difficult as it sometimes was living with thal, I’d hate to be a parent assigned the duty of raising a thal child. I have a Son and would not want to spend the endless hours at his bedside watching them in white stick needles of all shapes and sizes into my baby! Yup, they had to make the tough decisions. But always looking for the miracle.

Of the six of us who experienced this study only two of us survive to this date. No, no deaths were the result of the study. Thal took them. Most not many years followed before they succumbed to thalassemia.

After all these years I never knew much about the results of this study I played a part in. All I remember being told is, let’s try to keep the counts high and drink tea. Now that I have the actual publication I find it interesting. I don’t have any medical background so my interpretation may not be right on.

Tea can reduce the amount of iron we retain from everyday foods.
And with a higher hemoglobin we retain less iron.

I’m not sure how overall accurate it can be with such a small sample and really no control group. Also has it been duplicated? However, I am living proof that a normal iron level can be reached. I do still drink plain unsweetened fresh brewed iced tea. Not every day but quite often. At least several days a week and I usually order it when out for dinner. Recently I have been attaining a much higher hemoglobin (8.5ish to now 9 – 9.5) and even with receiving more blood more frequently my ferritin has dropped to the lowest it has ever been (131). This made me think of the study and I wanted to read and see what its conclusion was. I’d be interested to hear from today’s doctors and researchers regarding the results of this study.

Special thanks to my niece Samantha for helping me find and get my hands on the publication.