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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55382 Posts in 5923 Topics by 6236 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Raised hematocrit and reduced iron  (Read 8246 times)
GMichael
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« on: March 01, 2017, 10:49:51 AM »

Until now, I have not had anything to contribute to this group.  I registered months ago, but recently I discovered something that I want to discuss.  I have been using  prescription bioidentical testosterone for a couple of years.  Last time I refilled the prescription, I looked at the label and mistakenly started taking double the recommended dosage.  I didn't think much about it until I ran out and called the pharmacy for a refill.  They said I wasn't due for another couple of months.

However, I had also had some blood work done a couple of weeks ago and had noticed that my hematocrit was normal for the first time in my life.  At 40 I just hit the bottom of the normal range for people without thalassemia.  My iron (ferritin) had also dropped to the lowest it has ever been.  All my other iron numbers were in mid range.

The doctor told me that testosterone increases hemoglobin and red blood cell production.  This can be a problem for people whose hematocrit is high.  But for thalassemia patients, increasing hematocrit is difficult and so is reduction in ferritin.  My ferritin has run 250-350 for as far back as I have records.  I got it down in the 70-90 range taking lactoferrin and IP6.  But suddenly to find it at 40 was quite a surprise.

This could be important for thalassemia patients whose hematocrit is dangerously low or whose ferritin is too high.  Does anybody know more about this?  Could we increase testosterone to solve common thalassemia problems?
« Last Edit: March 05, 2017, 09:31:52 AM by GMichael » Logged
sofear
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« Reply #1 on: March 01, 2017, 01:23:52 PM »

Hi GMichael,

personally, this is one of the most interesting topics for me, too. There have already been a few discussions in here that included the area you wrote about and in the case of thalassemia minor, it often seems to boil down to the question where exactly the majority of symptoms people experience are coming from. There seem to be quite a few people with thalassemia minor who have normal hemoglobin values and, like in my case, also a hematocrit in the normal range. Others again have lower values, but something more common seems to be a reduced size of red blood cells and a red blood cell count in the high or higher than normal range.

There are just so many questions to get closer to what's all causing it and I'm afraid I personally don't have the knowledge to answer them. The last replies in this topic might also give something to think about: http://www.thalassemiapatientsandfriends.com/index.php/topic,5738

Interesting in your case would be:
  • How did taking testosterone affect your liver values like GOT, GPT or GT?
  • Did your bilirubin values change?
  • Did your MCV value change?
  • How did your RBC count change exactly?

I think it's hard to judge with only a few values and no before-after. Helpful could be whether you feel better now and then have a look at what exactly changed. But a set that only consists of current blood values might still be helpful. I guess you could post them or send them to Andy because he has already seen a lot of blood tests and knows where to look.

Greetings,

sofear
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GMichael
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« Reply #2 on: March 01, 2017, 01:31:16 PM »

Thanks, sofear.  I am at work right now and will have to get my lab results later today. 
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GMichael
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« Reply #3 on: March 01, 2017, 05:04:12 PM »

Attached bloodwork after increase in HCT and reduction in Ferritin.
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sofear
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« Reply #4 on: March 05, 2017, 07:54:22 AM »

Hi GMichael,

we don't have any values from before your testosterone treatment, but it would be interesting to know whether you are noticing any difference in your general well-being after starting it. Keep in mind, though, that we also don't know whether you were deficient of testosterone before. Furthermore: if you have thalassemia minor and are taking testosterone at the same time, even as a hormone replacement therapy, I'd recommend you to check your liver values on a regular basis. I don't drink, smoke or take any other medication and some of my values are always on the high end of normal.

In this post Andy talked about some of my blood values. One of the main questions for thalassemia minor is probably where exactly the symptoms many of us experience are coming from, since quite a few are having normal hemoglobin values. It might be that increasing erythropoiesis helps people who suffer from rather low hemoglobin. On the other hand, we have to keep in mind that erythropoiesis in thalassemia is ineffective. Analogy: while driving faster with a car that has three wheels might work, it could increase the damage done to some of the parts and cause other problems.

This is something that experts could probably explain in an easy way to us, but since many still call it thalassemia 'trait', you can guess how much they believe in people experiencing symptoms.
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Andy Battaglia
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« Reply #5 on: March 05, 2017, 05:33:08 PM »

I'm not sure the side effects of a higher dose of testosterone would be acceptable as a long term strategy. As far as for thal major, using EPO has been studied for years and has been shown to have some benefit for intermedia and major thals, and there is a current clinical trial on the subject, but it seems like it's taking forever to come to any conclusions about its potential in thal patients. I don't know if stimulating EPO production through the use of testosterone has been considered. Many majors already take testosterone at some point, so it may be that the increase in Hb is not significant.
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Andy

All we are saying is give thals a chance.
GMichael
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« Reply #6 on: March 05, 2017, 06:07:56 PM »

Thanks for the perspective, Andy.  I've been researching this question.  So far, I'm finding the possible negative effects of testosterone supplementation can be high hematocrit with corresponding high viscosity of the blood, but this is for normal people whose hematocrit might rise above 52.  It doesn't seem very likely for most thalassemia patients.  My hematocrit was 40.3, the highest it has ever been.  
The research that shows risks of heart attack and stroke seems to be related to blood clotting at this RBC level.  The other possibility is low iron, which also seems unlikely for thalassemia patients.  After years of ferritin 250-350, I am fine with ferritin 40-70.  The sudden drop from 70 to 40 was something of a surprise. I couldn't figure it out until I got the call from the pharmacy and realized I had been double dosing for a month or so.
I am waiting for the results of a new testosterone test to see how high it actually went.  I haven't turned in to a wolf man or noticed road rage increasing.

Oh, and I also ordered tests of my liver enzymes.
« Last Edit: March 05, 2017, 06:19:51 PM by GMichael » Logged
GMichael
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« Reply #7 on: March 05, 2017, 07:33:26 PM »

Interestingly enough, I was a dialysis tech in the 1980s-90s, and I had a patient working with Dr. Eschbach who did some of the early work with erythropoietin.  Then EPO was still in development, and, of course, litigation about who would make money from it.  It was a God send for kidney dialysis patients who were anemic.  From your comment, it seems there is now the same kind of delay regarding thalassemia and anemia.
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GMichael
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« Reply #8 on: March 06, 2017, 07:23:31 PM »

New results with testosterone, blood, and liver enzymes:

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Andy Battaglia
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« Reply #9 on: March 09, 2017, 07:10:16 PM »

Do you have prior results for bilirubin? It's not often I see normal reports.
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Andy

All we are saying is give thals a chance.
GMichael
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« Reply #10 on: March 09, 2017, 08:00:10 PM »

All my liver numbers have been in normal range for about three years.  I've been watching them closely because I have hepatitis C.  It has been in complete remission since I was treated using a protocol originated by Burt Berkson MD Phd.  However, when the disease erupted in the fall of 2014, my ferritin went above 4000 and some of my liver enzymes were off by a factor of 100.
11/26/2014
Ferritin: 4107.6
Alkaline phosphatase: 4.1 U/L
Alanine Aminotransferase: 1785 U/L
Aspartate Aminotransferase: 1083 U/L
Bilirubin total: 4.3 mg/dL
Anion Gap: 11.7 mEq/L
That I am healthy now is remarkable to say the least.  A naturopath who knew Berkson administered  alpha-lipoic acid, silymarin, and selenium intravenously. I also took low-dose naltrexone to boost immunity. My conventional doctor was amazed at my recovery and has referred people to the naturopath.
Here are references about the treatments that may be interesting:
http://www.healthyhepper.com/berksonclinicalstudy.htm
http://www.honestmedicine.com/low-dose-naltrexone/

Recent Bilirubin numbers image attached.
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Andy Battaglia
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« Reply #11 on: March 10, 2017, 11:03:45 AM »

I also am amazed. The IV treatment has made a big difference and this is information more people need to know. It only reinforces my belief that many of the problems of thalassemia can be treated with nutrients.
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Andy

All we are saying is give thals a chance.
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