Real causes of fatigue in thalassemia (minor)

I don't have much to add in terms of help here, but wanted to chime in support for bigg as he did the same for me when i posted in this forum 4 years ago.  I really admire his tenacity and scientific approach.  Reminds me a lot of me, but i see has gone a lot further.  And i thought it was thorough!

Well it's been 4 years and i have been on all sorts of swings and roundabouts.  But i am still much the same   I dismissed the idea of thal.minor a long time ago as Andy mentioned that i should feel fine as my Hb was at 12.9 i think at the time.  It fluctuates, i think its about 12/12.5 now.  I think this was a well intended but possibly damaging piece of advice.  As bigg illustrates, he has Hb of 15.3 and still feels fatigued.  I believe (though i guess none of us know) the theory of an increased requirement for vitamins and minerals is an accurate one, and it putting a huge strain on our bodies causes the fatigue.  Obviously as i've got older the fatigue has increased.

It started very young, i remember at 10 yo needing to have naps after school when other kids would want to come round and play, and moan that i was sleeping.  Having aches in my legs after a full day, having cravings for lemons and salt and vinegar, dry eyes, dry hair...  Though my energy would be ok after a nap.  Now the nap is mandatory it feels like to keep me alive, not just to tide me over for activities.  Activities are almost non existent.  It is my 30th birthday in a couple of hours, and here i am.. On a forum for answers.  Energy to socialise these days is non existent, energy even to be happy.

My recent searches into health were focussed around GI.  I started paleo too and thought i had wheat allergies.  I would have constant diarrhea so figured this was the cause of my lack of energy (lack of uptake of nutrients).  I focussed on this.  I have right shoulder pain and chest pain.  I figured this is gallstones and pancreas pain which correlates perfectly with the diarrhea fatty stools.  I have been trying to curtail this for a while with slow progress (l-glutamine, colostrum, ox bile, digestive enzyme, probiotics).  Slowly this is gaining SOME relief in symptoms of diarrhea but not energy.  I have cut out wheat for a couple of years now and dont feel much different.  Better than before, but not BETTER.  SO this is not a root cause, just a antagoniser, so best left alone.

Of course, i believe my gallstones are (probably) primarily bilirubin.  This would again correlate with thal minor.  This would also explain the pancreatic pain and problem digesting fats (stones blocking the pancreatic duct causing a back up of pancreatic enzymes in pancreas, causing it to digest itself).  The small gains i have here seem mainly palliative though, and not curative.  It is worth noting these symptoms have been slowly growing from barely noticeable to strong over about 10 years.  To the present point of unignorable.

So here i am.  4 years later from when i first posted, trying so many different things i wont even remember them.  But i ordered prescription cortisol (raw adrenaline) over the web, as well as thyroid hormone, which i shouldnt have done but was desperate.  Downed the bottles, and felt nothing.. Nothing!  Prescription meds, and i know they were real as my dad uses the same thyroid meds i just didnt want to steal his.  Thats how bad my levels are, cortisol barely does anything for me.  I have had food intolerance tests, visited a nutritionist for help with adrenal fatigue which again did nothing.  I have had a surgery for a perianal fistula due to the constant diarrhea.  I went to a private doctor to blood let a pint a week because i saw my ferritin went up from about 40 to 200 in a couple of years.  My GP was not happy but it normalise my sometimes fluctuating liver enzymes...  Theres so much i've tried i honestly cant remember..  But as i say, here i am.. Back at Thalassemia.

It makes the most sense.  I had the symptoms from very young, i always crave high nutrional value and alkalising foods, like dark chocolate, lemon, vinegar, salt, artichokes, anchovies, cherries, berries etc etc.  Leg aches, gall problems...  Basically, i just want to call BS on the Hb levels being the only, or even main cause of fatigue for Thal.Minor patients.  It just doesn't marry up with me and what i'm seeing.  I just want to say thanks bigg for being there to message me when i was bad, and well done for keeping up the work.  I was reading through today looking for answers and again seeing only people who have 8 or 9 Hb levels complaining of fatigue and comments from others saying that if Hb is high then you should be fine, thinking how can that possibly be, with all the other factors that would come in to being mycrocytic with so many extra blood cells being made.  I will read your above posts and try to take some similar supps to what you're taking.

An interesting point to note, is that whenever i go to Cyprus every year for family holiday, usually between 1-2 weeks, i feel energised somewhat.  A lot more than usual but still not 'normal' but other peoples standards.  But a 100% increase for me anyway.  I put this down to cleaner air, vitamin D, and probably mostly down to siestas. 

At the moment i am taking multivit, b complex, b12, wheatgrass juice powder, folic acid, transdermal magnesium oil, gall plus support, digestive enzymes...  Only been back on them for 2 days so nothing yet, but the mg oil and gall+enzymes has been longer so thats been doing its thing.  I also take whey isolate and hydrolysate sometimes instead of meals to ease the burden on my digestive system, lemon water, marmite ( ), iodine....  who knows what else...!!  I tried Protandim for a while, something thats supposed to help with oxidative stress and cause a guaranteed increase of glutathione.  Again didnt notice a huge amount of difference, but was taking it on its own, without fixing my diet much.

Pfff  i've lost my thread there is so much going on (basically im tired and can't concentrate anymore or even proof read what i've written).  But keep on keeping on.  It's all we have really.  I pray there will be some cure but in my heart i know there wont.  The system wont allow for it, it doesn't work like that.. :  Money rules.  But good luck with your search.

i  have   a  double   delhma   i  have  alpha   thalasseamia  minor  and  am  on  major   tranqillizers  for  schizophrenia  ........ fatigue  is  a  major  issue  for   me....thanks  for  info  above  adios  good  ferinds...keep   good  ideas  and  info  flowing  i  love  thalpal  ive  learnt  so  much  thankyou

This discussion is fascinating and tells me that patients are taking their condition much more seriously than the medical industry that tends to dismiss thal minors without any thought.

I want to address one specific problem in thalassemia that is finally being given its due importance with thal majors but still ignored in thal minor. Bigg has touched on this with his discussion about erythrocytes.
http://www.thalassemia.com/thal_intro_2.html

Even though this quote is in the context of beta thal major, the same thing happens in thal minor, although to a lesser extent. This is a vicious cycle that feeds itself and adds to the destruction of red blood cells by the creation of more red cells. Efforts to improve the quality of red blood cells and reduce ineffective erythropoiesis seem to be the best approach. The "precipitation" produced also makes me wonder if Bigg is onto something when he suggests that this may be a contributor to other physical problems like the breakdown of muscle cells.

There are many excellent suggestions in this thread regarding supplements, and the use of natural herbs and spices that have strong medicinal properties does help those who develop a good program for themselves, as we see in the posts in this thread. For those considering this approach, please be patient and think long term. We are talking about natural supplements and foods, not drugs, and it takes time to show results, but they do appear in the long run, often in very subtle ways. I recently started using wheatgrass extract after a long break, and once again I am convinced that wheatgrass does have amazing properties. One thing I noted was my telling myself much less often when I wake up in the morning, "I'm so tired. " This was a subtle thing that I noticed and is typical of what is seen after re-starting a discontinued supplement that seems to be having no effect. You don't see any dramatic immediate effects from natural methods but the effects are real, so think long term. The goal of optimizing the production of red blood cells will pay off in the long term. It will not eliminate all of the problems associated with thal minor but it will help.

I do not believe that a significant deficiency of vitamin D will respond to low doses of D. In my own case, it took a year at 5000 IU daily to bring my level from 19 to over 30. My level of 19 was after two years of using 2000 IU daily. Periodic testing is necessary to assess your progress, but I strongly recommend doses higher than 2000 IU daily. My doctor recommends I continue to take 5000 IU once weekly even during the summer time when I do get a lot of sun. The difference in my life is amazing. I just wish I could get more D from sunshine. My long time winter depression has vanished and I no longer feel as though I am holding my breath for months on end. My immune system is also improved and I recover quickly when I do get sick. After many years of alopecia, I even have some stubble growing and have to shave occasionally. Even my nails grow faster now. I am wondering if my health would have been much different had I remained in Florida and continued to work outdoors, as all my issues began after I was no longer exposed to the sun for 6 to 8 hours daily.

Dear
Andy
You are welcome to India to have plenty of Vit. D

ak82,

Did you get tested for vitamin D level? Your comment about Cyprus literally screams that your D levels need to be raised. I get exactly the same lift when I go to Florida and can get a few days of intense sunshine. Are gallstones confirmed? Has your thyroid been tested?

Your Hb level should be sufficient to avoid the symptoms of anemia, but that does not mean that the hemolysis present in thal minor does not have an effect. An earlier comment in one of your posts mentioned craving lemons and salt. The salt craving  is fairly simple and is a sign that your body needs more chloride. The simple solution is adding more salt (sea salt only please) to your diet. Lemon craving indicates a need for magnesium and this fits right in, because hemolysis causes an increased need for magnesium. If your bone marrow is overactive, you can still have a normal or close to normal Hb, but at the same time, you will have a high rate of RBC turnover and this will lead to many problems, including gallstones. However, the oxidation caused by the process of hemolysis is the real enemy, and your body asks for foods high in antioxidants in response. I feel that for the symptoms that are truly caused by thal minor, a diet high in antioxidants is the main thing you can do to help yourself.

I'll be honest. I think there is zero benefit to consuming meat extracts, such as over the counter thyroid supplements. From my own experience, they do not help the thyroid at all, unlike synthroid which actually does correct a low thyroid. I caused myself a lot of serious and even life-threatening problems by thinking I could treat my thyroid with supplements. All I managed to accomplish was that I almost died because I did not get medical attention. My advice is if it's suspected, get tested.

Looking at your blood reports from a few years back, your RBC count is high, as expected, and your MCV is quite low, showing that you have a high number of small defective RBCs. This would support the theory that you do have a high blood turnover rate and that you are suffering from the effects of chronic hemolysis. I wish there was some easy solution but there isn't. Long term dedication to a healthy diet, loaded with antioxidants is essential, as is continuing magnesium supplements.

If you want to read a summary of the effects of oxidation on trace elements in thal major, see this link. http://www.hindawi.com/journals/ane/2012/270923/
It is the most comprehensive summary I have seen. If you look through it, you will learn much about what is depleted by thal, but interestingly, you will also see mention of conflicting results from different studies. I note this to emphasize that even with thal major, there is conflicting information, and that with thal minor, there is a general lack of information, so we are constantly learning more from people like you, as we try to find solutions. It would really help if the medical profession would acknowledge that thal minor does result in health issues and that this need great research so that minors can do something besides experiment on themselves.

Thanks a lot for your reply Andy.

I went to the docs today (a horrible doctor who completely ignores my problems and has done for years, i may need to switch.. again..)  I complained of back and shoulder pain and he basically responded with i always come up with new symptoms... anyway long story short he ordered an ultrasound at least so we'll see how that goes. I  think next time i see him ill ask him to send me to Wittington hospital in london which i saw somewhere on the forums is recommended for thals.

Anyway i basically think i have a ruptured gallbladder which is leaking all over inside me.  Has been for years, i used to get this burning right under my bottom right rib when eating with indigestion.  Another doc found it odd how i would get burning pains down there but did nothing to investigate.  I only relised today that its probably bile dripping down.  Anyway im sure the ultrasound will show up all sorts, i will try to get them to look at kidneys pancreas and spleen too at the same time.  But either way as i say im sure something will show up which will finally have to make them take it seriously.

Quite depressing knowing i cant do much about it though.  I am not going to let them take my gallbladder out or give a splenectomy.  From things i've read getting rid of the gallbladder doesnt rid stones anyway so whats the point.  I'm starting to clutch at straws now and think about experimental gene therapy and bone marrow transplants.

My problems get even more complicated as my father is hypothyroid and has b12 injections, but he doesnt have the trait!  And my symptoms lean closer to how he is now rather than my mother, which is just really confusing.  But i wonder if whatever he has is just exacerbating the thalassemia which is the real cause.  That is what i am going to focus on.  I am just trying to limit my eating at the moment, taking digestive enzymes, veg juices, protein powders and vitamins to lower the burden on digestion, have as much rest as possible and see what they ultrasound results bring.  Then try and go and see the Whittington hospital and see what happens there.

Im slowly running out of ideas, which is pretty horrible.  I always had some sort of hope before but now its running out.  Antioxidants i guess will have to be the way but ive always had them anyway... feels like im delaying an inevitable..  I wont stop though, theres nothing else i can do.  Seen some interesting docs on DNA and how it can be manipulated with positive thoughts and frequencies   Desperate times!! I think i will meditate and stuff and see if that fixes up my DNA lol.  Worth a shot.

Thanks Andy.

Make sure you find out the size of the spleen. It is an important indicator of hemolysis.

Ok will try to. But i want them to look at gallbladder pancreas liver spleen and both kidneys! Basically most of my torso, not sure ill be able to get away with it all, but ill do my best.

Anyway, new day, new hope. Had a nap in the sun today at lunch time and must say i felt significantly more alert. Have u looked into sunbeds yourself andy? Looks like they do produce vitamin D and is a much better alternative to supplements which it seems has a lot of problems being metabolised. Im thinking that might be a way to go. Dont think its a silver bullet for me, but at best case it might be a bronze, and id take that at the moment ;)

:positive thinking:

Don't use a sunbed.  The lights emit UV rays of smaller wavelengths than what the sun emits. Exposure to these rays can cause cancer with only 1 use!

You got any sources for this? I would have figured melanomas would be endemic if that were the case, considering how many tanning salons are about. I live in essex. Tanning salon central. There are also therapeutic light boxes that produce vit d. You cant disuade me that easily. Would also love to see some info on what you mentioned

I could show you thousands of webpages that provide this information and have attached just three below to get the story across.
As for the UV wavelengths, I am an industrial chemist; my job involves using artificial light sources to accelerate the weathering for polymers and surface coatings - these include UV lamps.  It is part of my job to understand the spectral irradiation of the sun and all the different light sources we use so that the accelerated weathering most closely resembles daylight at noon.  The UV component in the solariums includes wavelengths smaller than those found in natural sunlight - these wavelengths are known carcinogens.
Please reconsider your use of sunbeds and your enthusiasm to recommend them to others. Having Thal is bad enough without adding cancer to your woes.

http://www.heraldsun.com.au/news/breaking-news/sunbeds-kills-800-in-europe-every-year/story-e6frf7k6-1226434535837

http://sixtyminutes.ninemsn.com.au/stories/lizhayes/291312/dying-for-a-tan

http://theconversation.edu.au/not-a-sunny-outlook-tighter-sunbed-regulation-is-long-overdue-2179

I sort of agree with Sharon.

If anyone has heard of Ceragem here (ceragem.com is official website) is also a sunbed type of machine which releases UV rays which is equivalent to that released by Sun which in turn increases Vitamin D3 in the body. Back when in 2009 January I got diabetes, 2 months after, i.e. somewhere around March 2009, I was referred to that machine (here there is a center where they give free massage) so I just went for some days to try as they claim it is also capable of curing diabetes.

They said, that initially to reverse the disease, it may do opposite, that, if I want to cure or lower my sugar levels, initially they may increase and it did. But then I got tired of that mess and said, enough, it's good for nothing. Then, I remember that day well which changed my life forever, 16 April 2009, it was last day of my 9th grade exams and sudden pain started in my left leg on side near the hip joint and down below it as well.

Months after, my Vitamin D tests revealed that it was only 9.62 and that I also had Osteoporosis.

I feel that the machine Ceragem only did this mess to my body, it removed Vitamin D instead of doing any good (reversal effect) because I was all fit and fine before it.

Thals (majors) are already complicated and I understood after this incident that we should stay away on rather what's not tested on thal majors yet and that it can cause big troubles rather than doing any good.

-P.

i  have  alpha   thalassemia    minor  and  im  on    major  tranqillizers   for  schizophrenia   and  am  constantly    tired   eat  lots  of  red  meat  green  tea  green  leafy  vegetables   multi  vitamin  supplements  no  coffee  for  5  years   got  any  ideas    for  me  to  combat  tiredness   with  alpha   thalassemia  minor==need  feedback

Hello
I see this is an other older post that bring me more concern about being a thallasemic trait person .
I already said in other posts that  this last year for me was very hard . Since May 2013 I have been in the doctors office more than I ever been  during all the years of my life . I have seen my PCP ,I have seen hematologists,I have done all the medical tests you can imagine from a simple blood test every month,to CT scams and ultrasonography of various parts of my body....all this because I'm too anemic ,I was suffering of a strange abdominal pain,and join pain ,fatigue ,dizziness,I have a strange pallor on my skin . I have a gallbladder removal last week also. I finally went to a naturopathy doctor that is actually a member  of the church I go .actually he came to me and said everything I was going through without even seen one of my blood exams. So I said I was dealing with thalassemia gallstones  and maybe iron and folate problems. He said right away that the supplements I was taking were just making me feel worst. I stopped my folic acid ,B100 complex, C,D,NaturalE,potassium and magnesium and guess what? May color improved a little bit. I have taking it for good two months. And I though It was going to help but unfortunately got me worst. I keep talking with this amazing doctor and we got allergy  and hormones blood tests and saliva  tests. Couple weeks after ( and also after a laparoscopic procedure) my naturopathy doc gets the tests back and explained to me that I'm in extreme fatigue because I have stage 7 adrenal fatigue. I have just one hormone working to keep my brain going I lost everything.  I literally running to low I do not have adrenaline or noradrenaline enough. I never heard about it but there it go let me get educate .... I'm sharing it with you because the symptoms are the same we thallassemic trait are having Extreme Fatigue ....well the thing is this can be cause by stress, consumption of a poor diet with lots of meat and fat.( which doesn't match my life style!!!) so my question is us the free radicals from my thalassemia doing it? I was born a vegetarian, I did have a time in my life that I did consumed eggs and cheese but not even close of people are used too and also has at least 4 years that I just don't do it anymore ,I have been even cutting a lot in cooked foods and practically nothing refined... Am I just an unlucky person or thalassemia even trait gives us more chance to develop this things?
I having a hard time cause my family don't have history of the things I have been facing or  I even have done anything to bring this kind of sickness to myself. Anyways  ....this is another link for us to read ,and I'm sure has a lot about adrenal fatigue to be read and watch over the internet. I'm being treat by my naturopathy doctor taking special supplements cause the normal ones Do Not Work. So if you are in fatigue and even the supplements are not working is better you check with a naturopathic doctor cause I already learn that MD s don't want to deal with it .

    http://www.adrenalfatigue.org/what-is-adrenal-fatigue

I'm not sure about each is the number of the stages for adrenal fatigue. Since the doctor show me a stage 7 on a test diagnostic that I don't remember if is a number just for the test. When  I search online I found just until stage 4 that actually is very similar to Addison's desease.

In 2007, I was diagnosed with alpha thalassemia trait and my hgb never dropped below 12.8 mg/dl even with a ferretin level of 9.  I was extremely fatigued until my ferritin got above 50.  It was above 100 since 2012 and I thought it would be okay to donate blood last spring.  Within a few days, I had right AB pain with right shoulder pain.  Gallstones did not show up in ultrasound but problems with pancreas did.  Many tests later I was diagnosed with chronic pancreatitis.  I tried to tell doctors that trigger is blood loss but they don't think so.  The bilirubin stones from hemolysis makes sense. 

On another note,  I have a lot of problems with ingested D (supplements and fortified foods).  I can get it from sun perodically throughout day and feel fine.  I cannot take folic acid (folate is fine), B6, curcumin, methionine (sp), selenium and E without side effects.  I try to eat a very balanced diet so I don't need supplements or fortified foods.  The only supplement that I take is magnesium. 

Best wishes.
Melissa