Fatigue/Lethargy

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Fatigue/Lethargy
« on: December 17, 2016, 10:42:53 PM »
I'm a 27 year old male with thal minor. To summarize, I never had any issues with energy or fatigue as a kid/teenager. Around the age of 20 I noticed myself getting more and more tired for seemingly no reason. This got progressively worse over time, and is now worse than ever. I always assumed that it couldn't be related to thal minor, since I've had that my whole life, but since reading accounts of thals whose symptoms get worse over time, I am beginning to wonder. I have a persistent tiredness accompanied by difficulty concentrating. I've taken multiple blood tests, and am physically completely healthy, besides the "mild" anemia which I've had my entire life due to thalassemia. I was vitamin D deficient a few years ago, but corrected the deficiency with supplementation. I've been supplementing regularly ever since (now 5000 IUs a day), but don't feel better. I also feel worse now than I did when I was clinically deficient. How likely is it that my fatigue/brain fog is due to thal minor? I don't have many of the other symptoms commonly associated with anemia/thal, such as shortness of breath, dizziness, pallor, or body pains of any kind. I also find that my tiredness/lethargy are separate from the feeling of being sleepy. There are many times where I feel absolutely run down and exhausted that I could not fall asleep even if I tried, but I otherwise sleep normally at night. Any thoughts?

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Offline sofear

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Re: Fatigue/Lethargy
« Reply #1 on: December 19, 2016, 06:11:09 PM »
This is one of the better forum topics I could find about this problem: http://www.thalassemiapatientsandfriends.com/index.php?topic=4275.0

It's weird that no one seems to be able to find out why Thalassemia Minor causes that type of fatigue. With my hemoglobin values usually ranging from 13.5 to 14.0 g/dl, I can't see how this could be the main problem of my disease.

Another thing I always wondered about was why some people with Thalassemia, like me – even though I'm half Italian, are sickly pale, while others seem to be not affected at all with their skin color.

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Offline Andy Battaglia

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Re: Fatigue/Lethargy
« Reply #2 on: December 20, 2016, 01:08:55 AM »
AbsoluteZ3R0, do you know what your current vitamin D level is? I have come to believe that the low end considered acceptable is not anywhere close to high enough. I am taking about 10,000 IU daily and feel like it's only okay.

sofear, many of the issues associated with thal minor have ineffective erythropoiesis at their source. Check your CBC for the RBC value and check your bilirubin level. If both are high, it is a sign that in spite of the good Hb, you do also have ineffective erythropoiesis taking place. The amount of small and pale red cells in an examination of your blood will also give you some idea if the bone marrow is working overtime.
And, do you get darker if you get a lot of sun?
Andy

All we are saying is give thals a chance.

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Offline sofear

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Re: Fatigue/Lethargy
« Reply #3 on: December 21, 2016, 03:56:30 PM »
sofear, many of the issues associated with thal minor have ineffective erythropoiesis at their source. Check your CBC for the RBC value and check your bilirubin level. If both are high, it is a sign that in spite of the good Hb, you do also have ineffective erythropoiesis taking place. The amount of small and pale red cells in an examination of your blood will also give you some idea if the bone marrow is working overtime.


I sent you the last two blood tests I had via PM. I could have quoted some values here, but I think you might be able to see more in there than I am.  :dunno

And, do you get darker if you get a lot of sun?

I can get a slight tan, but usually only in combination with a lot of sun and a few sun burns. (I usually try to avoid sun burns, of course.)

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Offline Andy Battaglia

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Re: Fatigue/Lethargy
« Reply #4 on: December 22, 2016, 11:47:21 PM »
Hb 14, yet problems. The RBC (red blood cell count) is listed as erythrozyten on your report. As I suspected, it is quite high at 6.9. I see tons of these blood reports and it is usually around the high end of normal or just above. 6.9 is quite high. While this does wonders for your total Hb, it also results in a lot of defective red cells being produced. And this brings up why I feel that Hb level is only one component of what ails thal minors, and thals in general. The ineffective erythropoieis, which causes the bone marrow to be overactive, the debris left behind in the bone marrow and blood stream, the defective red cells in the blood constantly being filtered out by the spleen and liver and the unmatched alpha globin chains are all present. These are all known to wreak havoc in thal major, and it's obvious that these same processes are all at work in the milder forms of thal but to a lesser extent. Antioxidants are part of the solution, but I really feel there is more to it. And even in Folate doesn't make you feel any different, it may be needed for the overactive production of RBC's. I'm not sure if the problems can all actually be countered. Antioxidants help, but something I'm seeing more evidence across the board to support is striving for a high vitamin D level and not settling for "it's in range." At my recent physical, my doctor mentioned that it had been discovered that MS patients did better when their D level was >70. I have heard this is relation to other disorders, as well and wondered if we all shouldn't be striving for D levels that are much higher than the bottom of normal. It may take high dosages like 50,000 IU to reach levels that high, but I am seeing more and more that people do better at what are considered high end levels. I may take a look at the 50,000 IU weekly dose. I'm taking that much in a week, but am wondering if all at once might give a better effect.
Andy

All we are saying is give thals a chance.

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Offline sofear

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Re: Fatigue/Lethargy
« Reply #5 on: December 27, 2016, 08:45:31 PM »
I was mostly sitting at home when I did the last blood test. Do you think that doing a blood test after starting to do sports again, especially something demanding like weightlifting, might be able to take us a bit closer to the source of the fatigue? Could it also be that the body is not able to produce the high number of RBCs I need to have normal Hb levels under stress?

What I seem to get is that the following things might contribute Thal Minor fatigue. Please correct me if I'm wrong!:
  • Increased breakdown of malformed RBCs -> more waste products that the body has to deal with
  • Increased production of RBCs to balance out the increased breakdown -> more work for the body to produce them

Could some blood values only be showing the tip of the iceberg, e. g. after the body already balanced out the situation as much as it could?

I also wonder whether the additonal load on the body could weaken the immune system. Despite the pollinosis that I have had for my whole life, I'm having a lot of issues lately that I at least "feel" could be related to a weakened immune system: Multiple abscesses and (seborrhoeic) eczemas arround my body as well as a fungal infection of my toenail.

Too many questions...

Re: Fatigue/Lethargy
« Reply #6 on: January 18, 2017, 05:15:48 PM »
I had a CBC done a couple of weeks ago, here are the results:

CBC (INCLUDES DIFF/PLT) TP

WHITE BLOOD CELL COUNT 9.6 3.8-10.8 Thousand/uL
RED BLOOD CELL COUNT 6.29 H 4.20-5.80 Million/uL
HEMOGLOBIN 12.3 L 13.2-17.1 g/dL
HEMATOCRIT 41.0 38.5-50.0 %
MCV 65.2 L 80.0-100.0 fL
MCH 19.6 L 27.0-33.0 pg
MCHC 30.0 L 32.0-36.0 g/dL
RDW 17.7 H 11.0-15.0 %
PLATELET COUNT 229 140-400 Thousand/uL
MPV 9.1 7.5-11.5 fL
ABSOLUTE NEUTROPHILS 6374 1500-7800 cells/uL
ABSOLUTE LYMPHOCYTES 1786 850-3900 cells/uL
ABSOLUTE MONOCYTES 682 200-950 cells/uL
ABSOLUTE EOSINOPHILS 720 H 15-500 cells/uL
ABSOLUTE BASOPHILS 38 0-200 cells/uL
NEUTROPHILS 66.4 %
LYMPHOCYTES 18.6 %
MONOCYTES 7.1 %
EOSINOPHILS 7.5 %
BASOPHILS 0.4 %
CBC MORPHOLOGY NORMAL

I was actually pleasantly surprised with these results, considering my hemo/hematocrit haven't been that high in years (I'm not even sure my hematocrit has ever fallen in the normal range).

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Offline sofear

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Re: Fatigue/Lethargy
« Reply #7 on: January 18, 2017, 09:23:04 PM »
Yeah, but that might not only be positive. I think it's mostly the MCV we should be worried about. Mine is also in that range. I have the feeling that the balancing mechanism which makes some of the values seem not to bad might also cause a lot of problems. I wonder if the RBC count would decrease at some point with an increased MCV, but my knowledge is too limited to understand all the mechanisms in place.

Re: Fatigue/Lethargy
« Reply #8 on: January 19, 2017, 05:31:16 PM »
Yeah, until I started browsing these forums, it didn't occur to me that increases in hemoglobin/RBC may be accompanied by increased oxidative stress and strain on your body due to inefficiency/overproduction. My MCV is slightly higher than it was in my last CBC from about 2 years ago though, where it was at 62.

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Offline Andy Battaglia

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Re: Fatigue/Lethargy
« Reply #9 on: January 21, 2017, 09:39:18 PM »
We're talking about something that is never really discussed. Is there a way to reduce ineffective erythropoiesis? I'm seeing reports of minors with normal Hb levels but the RBC is quite high. One question, is what is the long term effect on the bone marrow from this rate of activity? But the big question, is there a way to decrease ineffective erythropoiesis while still maintaining a decent Hb level??
Andy

All we are saying is give thals a chance.

Re: Fatigue/Lethargy
« Reply #10 on: March 21, 2017, 03:18:52 PM »
I am one of those beta thal minros recently who is experiencing worst faigue lethargy symptoms from last 50 to 60 days.

Infact, may also be a miss from my side that last couple or more years I:
- did not take quarterly B12 (cyanacobalamin) shots
- did not take daily folic acid which I am adviced to take
- did not ensure Vitamin D level stays high. I only took Vitamin D3 before wintry months.

This resulted into a very poor health and poor blood work in Feb-2017 with low RBC count, hyperactive liver etc.
Feb-2017: Fatigue, lethargy, laziness, yawning frequently, non-alert and sleepy attitude feelings.

Then,
B12 shots were started every 2 days i.e. shot (Cyanacobalamin 500mcg + Folic Acid 1.5mg + Nicotinamide 200mg)
Vitamin D 60,000 IU sachet weekly once mixed in a cup of milk (4 weeks completed, 8 more weeks to go)
GERD tablet (Rabeprazole)
Probiotics given
Folic Acid 5mg x 5mg

And,

Slowly I started to feel a little better when 5 shots got completed on 8th March, yet its only 20% better.
As folic acid increased, the B12 circulated, I felt a little more better in middle of March.

Now,
1 ml Methylcobalamin 500 mcg shots have started today.
This would go on for another 3 months (weekly, fortnightly that way).

Yet,
The typical sharp Myalgia pain remains. I still get pain on the lower rib chest bones.
Shortness of breath remains but not like 1st March. Its much better today.
While I was my hands on the basin, my both palms still look pale
I still feel weak vision as compared a few months back
Blood circulation still remains poor
often numbness on palms and feet

My physician says it will take time to get back to "a new normal".
i.e. I may not feel the same "old normal" that I was 3 yrs back, but somewhat "degraded or near to normal".

What Andy pointed out is something new to me, never heard of.
And erythrozyten is something not written anywhere in an Indian CBC.

 

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