thal and oxygen saturation

I'm 32 and have Thalassemia Minor and have never done much about it.  I've been trying to be good to myself lately though and went to the Dr with fatigue as my main symptom.  Got bloodwork done and also an overnight oximetry test.  The blood work came back as expected (below normal Hb, etc) except for slightly high TSH, which means that an underactive thyroid could be causing the fatigue.  But the shocker was the O2 test.  My oxygen saturation levels were way off.  8 hour sleep the average was <88%, with a low of 77%.  Normal is 93%-97%.  But my heart rate was way normal (avg 58) which is supposed to be one of the big down sides of low oxygen saturation.

But I'm thinking maybe the oximeter is picking up on my thalessmia.  Anyone know if low oxygen levels as reported by a pulse oximetry test are characterisic of thalassemia minor?

Thanks,
JD

Hi JD and welcome,

You have brought up something very interesting and I wonder if any other minors have had the oxygen saturation test done. To me it makes perfect sense that if half your red blood cells are somewhat defective, that the oxygen carrying capacity of the blood would be lower. However, doctors always say that thal minor doesn't cause problems, even though it normally results in lower hemoglobin levels, and anemia. I would love to see a study on oxygen saturation in thal minors. And since you brought it up, I would also love to see a comparison of the rate of hypothyroidism in thal minors and non-thal carriers. We hear from so many minors that have low thyroids, that I can't help but wonder if there is a connection.

There has been very little research into the problems of thal minors, with about the only study I run into being one that studied whether thal minor women can have normal pregnancies and although the study found that thal minors can safely have pregnancies, the study did not note some things that are known to happen with some minor women, such as the frequent miscarriages and even death of the mothers when another gene such as the hemoglobin C gene is present. Thal minor causes many problems in people, especially as they age and there is a great need for statistical analysis of these problems along with research into their causes and treatment. The online forum is about the only opportunity that minors currently have to voice these problems and we have to hope that this will eventually draw the attention of researchers, as the way things currently stand, there is very little help for the quality of life issues that plague many thal minors.

Have any other minors had the oxygen saturation test done?

I've asked my sister who also has Thal Minor to get an oximetry done as well, I'll post the results.

Have any other minors had the oxygen saturation test done?

Do you know what the oxy sats on thal majors and intermediates looks like by any chance?
Thanks,
JD

my doctor says that our oxygen sat will be low because of red blood cell size

Hi all.

I know that this subject is kind of old (last post in 2008) so, I am not sure how many of you are still in the forum, but this topic was what brought me to your community. I would like then to share my observations about beta-thalassemia minor (that I have) and oxygen saturation levels from the competitive athlete perspective.

I believe that the levels of the O2 saturation really depend on the type of thalassemia that you have and whether or not you have a related haemoglobinopathy: (http://www.ncbi.nlm.nih.gov/pubmed/16450733). In general, thalassemias may cause abnormal production of one or more of the haemoglobin subunits resulting in  fluctuating oxygen saturation levels. As a competitive athlete, I started recently using the oximeter to monitor every morning my levels of oxygen saturation and try to gather some statistical data trying to relate them to the intensity of my workouts. So far, (having data from the first week) it seems that my O2 saturation levels vary from 89 to 99 and I have not yet observed any relation between hard, anaerobic workouts and low-O2 levels or long, aerobic workouts and low-O2 levels.

My next steps would be to: 1. Do a genetics test to see what exact mutation I have and in which subunit of my haemoglobins (the simple blood-count test only gives you an estimate of which haemoglobin subunits are present in your blood and at what level) and 2. Do a physical stress test to monitor my vitamin-carbo-protein-heamatocrite, etc levels while exercising under stress.

I think these two types of data can provide a complete picture of what my body actually was born with (specific gene mutation) and how it actually responds under stress. Even if you are not a competitive athlete, I believe it's worth knowing whether the O2 saturation low levels come from B12 deficiency, iron deficiency, or whether you simply need a little oxygen therapy

Good luck to everyone. I will post my complete multi-month data on the O2 saturation personal study.

Have a good time out there,

Loukia

HI Loukia,

I am very interested in knowing what you find. I am a Beta Thal Intermedia and always found long workouts to be more stressful to the point of causing Hemolysis and me being out of commision for weeks. I workout 3-4 days a week doing shorter muscle building exercises and staying away from a lot of running and cycling. I'd like any information to possibly improve my cardio endurance.

Thanks,

Bobby

If our toddler's diagnosis of beta-thal minor is correct, his oxygen saturation is always measured at his checkups and has never been higher than 97%. When he had a respiratory illness it was less than 94% and he was started on breathing treatments to raise it to at least 94%. We have tried to check his pulse oxygen at home with a monitor before, but they are thought to be inaccurate for his age, it usually reads 98% for him.

My oxygen level is usually at 98%, but my pulse is always higher even at rest and even in good physical shape, resting is rarely ever lower than 83-85. I have noticed the same thing with our toddler, however it may be normal for his age to have that higher pulse rate.

I have BTM, and i am on 24/7 oxygen therapy.  FYI, I had massive pulmonary emboli a few years ago which probably damaged my lungs (although pulmonary function tests were normal). So pls keep in mind that my problems could be from damage caused by the PE's. About 18 months after the pe's, I had a sleep study done and my O2 sats were below 84 while I slept.  Started on O2 at night only, but within 6 months was on O2 constantly.  What is interesting is that during even mild exertion, my O2 sats stay 98-100, but my heart rate goes up (I know, your HR is supposed to go up with exercise, but mine goes way up just by walking across a room.).  Doc (who does not believe BTM can cause symptom) says I have signs of Right Heart Stress (pre-congestive heart failure) and mild PHT. The O2 is to keep any additional strain off my heart rather than keeping my O2 sats up,   Per doc this is all from PE's, but doesn't make sense as lung study was normal.  Personally, I think the BTM is responsible, whether because that is what caused the PE's or because BTM is the primary culprit.  Interestingly, even on Oxygen therapy, (and turning up the flow rate) I get short of breath with mild exertion---just as I always have.  Seems to me my blood doesn't carry enough O2, which would make BTM the culprit.  I have also noticed that my blood pressure fluctuates--sometimes a lot.  It's always been low or normal, but sometimes now the systolic will go up as high as 165-170, even when I'm resting, while the diastolic can stay normal or is also sometimes be a little elevated.

Ladybug,

I think I may have asked before, but do you have the results of a complete blood count, CBC? Hemoglobin electrophoresis results would also be helpful. Your symptoms are more typical for thal intermedia than minor, so it would be useful to see your blood reports. It might actually be of some benefit to have a DNA analysis done also, to determine which type of thal mutation(s) you carry. While thal minor could add to the severity of the symptoms, it does not explain the severity by itself.

.....
My next steps would be to: 1. Do a genetics test to see what exact mutation I have and in which subunit of my haemoglobins (the simple blood-count test only gives you an estimate of which haemoglobin subunits are present in your blood and at what level) and 2. Do a physical stress test to monitor my vitamin-carbo-protein-heamatocrite, etc levels while exercising under stress.

I think these two types of data can provide a complete picture of what my body actually was born with (specific gene mutation) and how it actually responds under stress. Even if you are not a competitive athlete, I believe it's worth knowing whether the O2 saturation low levels come from B12 deficiency, iron deficiency, or whether you simply need a little oxygen therapy

Good luck to everyone. I will post my complete multi-month data on the O2 saturation personal study.

Have a good time out there,

Loukia

Hi Loukia,

I bumped up this thread because I'd really like to know how's your study coming along and if you got some new information to share. Thanks alot in advance!

I seek information about which defects in the Hb genes and the resulting disorders affect the oxygen saturation.
If my logic is right some conditions resulting from abnormal Hb (say Lepore) would not result in low blood oxygen saturation. The reason for that would be the higher affinity of bad Hb to oxygen which makes it difficult to be released in tissues.
There is a method called tissue oxygen saturation which can estimate the ratio between oxygenated and non-oxygenated Hb in peripherial tissues but these results would need proper interpretation.