Are there links between thalaseimia, arthritis and fibromyalgia

Have found reading posts here very honest and informative - thanks.
Being adopted from birth, I had no medical history. I was a sickly child. As I got older - thalassemia minor came back in blood tests - no big deal!! No one in my family had even heard of it.
 After 9 miscarriages between three live births(sustained with medication), it was also found I have mild vonwille brand disease(mild hemophilia). At 39, I have chronic arthritis to the point of being unable to work, and have the markers for ankolizing spondylitis. I have also been diagnosed with fibromyalgia. I am exhausted most of the time and try and avoid the oxycontin meds the doctor put me on because they leave me unable to function.
 I am beginning to think these "minor" conditions are the direct cause of the really debilitating ones, and if more attention had been paid to them, maybe the rest wouldn't have followed - or at least been slowed.
Does anyone know if there are links between theses "minor" blood disorder's and degenerative diseases

The only thing that popped into my head while reading the title was 'Iron Overload'. Do you know of they ever checked your ferritin level? (or a full iron test?) Though I must confess that Thal minor are told not to have iron overload. I've an other hemolytic anemia, and the carriers (of my family) have iron overload (=hemochromatose). A familymember has also Factor V Leiden (that's something like Von willenbrand)
Btw minors CAN have symptoms too! It's slowely more and more accepted in the medical field at the docs side.

thanks- I'm not sure about the iron overload - will check it out. Every blood test I have - my iron levels are low - and doc says it's not a worry because they are "always low" . Not sure about other levels but will check it out.

Melissa,

I am researching the combination of thal minor and von Willebrand and have found a couple articles that relate to various forms of thal major and von Willebrand and there is come cumulative effect from the combination, so there is possibility that thal minor and von Willebrand together may cause some problems. Both affect the blood and clotting, so there may be something to this. I want to look at these articles a bit closer and will give a further response once I have.

thanks - any info is always good - even if it's not what we want to hear. None of my children have been tested for thal - but I wouldn't be surprised if my son in particular was affected - at 14 he has been diagnosed with von williebrand and gout, and also has tourette's syndrome -   

Interesting stuff Andy.
I am sorry for your son Melissa. I knew a few people with gout, and it's no fun at all, the same for his other conditions.

Hi Melissa,

I am sorry for anything you are suffering and hope that you can find something that gives you comfort.

Actually i am not so familiar about your problems but as for fibromyalgia, i know that it has no mediction except for some ant-idepreesent drugs that doctors give --not for the purpose of depression -- but to relax the muscles to relief any fatigue or pain.

But according to old Ayruvada medicine, they have an opinion that the cause of fibromyalgia (as well as other diseases) is fluoride toxicity ( fluoride overload ) and when it is chelated from the body patients find a great relief to their symptoms.

http://www.earthclinic.com/CURES/fibromyalgia.html#cause

http://www.earthclinic.com/CURES/fluoride_questions_and_answers.html

http://www.earthclinic.com/CURES/fluoride.html



manal

thanks for replies. So someone earlier mentioned thal iron overload, and maybe flouride overload - if this were the case , should I give blood to rid the overload, or is it dietary - Really wouldn't have a clue. - Yep off to get blood tests - with a few questions.

Hi Melissa,

When doctors see the results of a blood test and see the low hematocrit or hemoglobin level, they almost always assume low iron, but this is not necessarily the case, especially when thal minor is involved. The low Hb is a result of the thal minor and has nothing to do with iron, unless iron deficiency co-exists. This can be tested through a group of tests called iron studies and should always be done before iron supplements are given because long term use of iron when not needed can lead to many health problems. And contrary to what has long been accepted by the medical establishment, many thal minors do have health problems related to thal minor. Some of this is caused by the anemia of thal minor and I believe some can be attributed to the physical nature of the blood which contains many defective red blood cells, and also the excess alpha globin chains that do not have sufficient beta chains to match with, resulting in what may be referred to as "debris" in the bloodstream.

We hear many reports of multiple miscarriages among thal minors but 9 is far more than I have ever heard reported, so it does seem that it may be the combination of thal minor and von Willebrand that is responsible. Both affect clotting and there is some evidence that von Willebrand factor is affected by hemoglobinopathies, so this may be why it has been difficult for you to have successful pregnancies.

There are commonly reported symptoms of thal minor and fatigue, tiredness, breathlessness, numbness and tingling in the extremities, weak immune system and others. Most of these can be explained by a lack of oxygen due to low hemoglobin levels and poor circulation which is in part caused by blood vessels that are not as elastic as they should be, along with the debris and extra alpha chains in the bloodstream. The degenerative disease connection may be related to the oxygen deficiency and poor circulation which does not provide adequate blood and oxygen to support the joints etc. Both thal minor and von Willebrand affect the properties of the blood, so there may be something to this as an explanation for the degenerative disease. Of course, there may also be other factors at play here, that in combination with these two problems, are leading to the other noted problems.

One thing I would suggest is concentrating on making sure the diets are high in antioxidants and that antioxidant supplements like vitamin E also are used.  Magnesium may also be key. L-carnitine is important in nitric oxide production which is extremely important for the health of the entire circulatory system and heart. Nitric oxide deficiency causes the blood vessels to become less elastic which makes it harder for blood to move through the vessels as well as it should. The ultimate effect of this is seen in pulmonary hypertension which affects the artery between the heart and lungs. L-carnitine can help prevent this and many thal minors could benefit from taking this supplement.

I don't think all the symptoms are explained by thal minor and von Willebrand disease, but I do think that the impaired circulation and low oxygen state serve to exacerbate the other problems. Gout is related to too much uric acid in the body, either from diet or poor kidney function. If the diet is good, then kidney function needs to be examined and once again both thal minor and von Willebrand may be implicated as possible causes of the reduced function.

When dealing with any chronic disease it is important to learn how to optimize the health within the context of living with the chronic condition. Diet and supplements can play a big role in the quality of life. I do think all the kids need to be tested for thal trait, as this is very important information to have in their own lives, so they are aware if they are carriers when it comes time to have children of their own, but also because this may be a factor in their health. I would also suggest getting yourself and the kids tested for vitamin D and magnesium levels. Vitamin D deficiency is being implicated in many health issues and may be a big reason why some issues get out of control. D is responsible for absorption of many other nutrients and is a good place to start anytime fatigue is an issue. Magnesium is so important to the health of red blood cells and the blood vessels, so this is also a key to optimizing the health when thal is involved.

Hi Andy,
Thanks for such a detailed answer - really appreciate it.
Due to go back to the doctor - so will ask for iron test and the others  you suggested, and ask the same for my kids.
I've always been wary about taking vitamin supplement's as I do have a good diet, but have been reading a bit about mine and my son's condition's and magnesium is one deficiency that keeps popping up.
Thanks once again - This is the first forum I have posted to, and I've already got more info than I was expecting.
Melissa

Good luck with the appts. We hope to hear from you soon, and ofcourse that you feel better soon.
Take care.

Hello, 'wanted to share some thoughts on this subject --

Having been diagnosed with fibromyalgia, I will definately attest to fibromyalgia and thal minor having very similar identifying characteristics and symptoms, and have found it most interesting after being told for years re: thal minor 'there are no symptoms'...there are many theories as to causes of fibromyalgia/chronic fatigue syndrome [according to some authorities/M.D. experts in the field of chronic fatigue syndrome, fibromyalgia syndrome manifests from sleep disorders found in CFS] including heavy metal toxicity, of which flouride toxicity might be included, as well as mercury toxicity from dental fillings, etc.

Dr. Jacob Teitelbaum had devoted his career to raising awareness of fibromyalgia and chronic fatigue syndrome, and his books have helped many people to get an education on management of these conditions as opposed to strictly the route of anti-depressant and other approved medications for fibromyalgia.  His books if okay to mention that I have found helpful are From Fatigued to Fantastic, Pain Free 1,2,3; some of Dr. Teitelbaum's research on fibromyalgia has been published as well.

I am sure there could be many reasons why someone has a tight chest feeling and shortness of breath, but perhaps one would want to have asthma or reactive airway disease ruled out when they see their physicians.  After reading the controlled study on this forum [re: clinical significance of thal minor trait], and after a previous diagnosis of asthma, I find it so interesting that some of the subjects studied apparently had asthma;  

I have posted previously that thalassemia may have been overlooked in my parents and grandparents [I am a carrier], but of interest, osteoarthritis, osteoporosis and degenerative joint disease have run in my family as well...

Those with thalassemia minor who have chronically low hemoglobin levels have reported many chronic maladies in posts in this group. We hear so much of it that we can't begin to doubt there is a connection between the long term oxygen deficit state of low Hb minors and the chronic conditions they develop as they age. However, finding anyone in the medical profession that accepts this is very difficult. It seems fairly elementary that if your cells constantly don't get adequate oxygen, that there will be long term effects and degenerative diseases would only be worsened and possibly even caused by this low oxygen state. I wonder how much chronic fatigue syndrome is related to thalassemia. There are at least 300-400 million minors on earth, so chances are some are misdiagnosed as having other vague ills. However, as you mentioned, there are so many other factors that also contribute to these illnesses. Heavy metals, pesticides, pollutants, and all environmental factors that introduce poisons into our bodies, even directly through our foods, are contributors to this constant increase in the amounts of these various degenerative illnesses reported. Add to this the lack of nutrients and especially micro-nutrients in the processed foods that have become dominant, the lack of which is another contributor to degenerative diseases.

Can these various illnesses all be attributed to thalassemia minor? I doubt it, but I do think that the low oxygen many minors live with is a significant contributor to the seriousness of these illnesses. I highly recommend that people learn the deep breathing techniques taught in yoga so that they can learn to optimize their respiratory systems and maximize the amount of oxygen they draw into their lungs.

For an incredible article about the effect of micro-nutrient deficiency and degenerative disease, see
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1693790/

It will take many years for the medical profession to accept that many thal minors do have significant symptoms that have an adverse effect on the quality of their lives. Even when minors are studied, they are all lumped together, so that the percentage that have symptoms is diluted by the many normal hemoglobin level minors. I think a major change needs to be made to any studies of thal minors and that they should be studied according to hemoglobin level, rather than including Hb's of 14 with those of 9. If those with low hemoglobin levels were studied as such, a truer representation of symptomatic minors could be assessed, and then perhaps there could be a starting point for treating thalassemia minor.

Anti-depressants are often a doctor's way of saying "I don't know how to help you, but if you take this pill, you won't care so much about the fact that you don't feel well."

Andy, so true!  At the risk of "more being less", some more thoughts on what you and the others have shared:  

Isn't it interesting that so many have had frustrating experiences and lack of validation with their doctors, both in regards to thals dxs. and chronic fatigue/fibro???  One of the things Dr. Teitelbaum mentions in one of his books on CFS/Fibro. is how he had to change his thinking that if he did not 'learn it in medical school', that it is not valid...[my paraphrasing].  Other M.D.'s focusing in fibromyalgia and CFS who are doing integrative approaches and looking at the big picture have also commented on how it is the tendency of many physicians to 'stop learning' [my CFS doctor] after medical school.  

Fortunately there are more and more doctors out there stepping out of the mold....Dr. Teitelbaum discusses a treatment approach that is in his book, called 'SHIN' -- stands for sleep, hormones, infection, nutrition [and this concept has been expounded upon and broadened in his more current edition of his book on CFS]; the different types of sleep disorders among many causes have endocrine and ferritin connections [big surprise]; anything look familiar here?  

Point of interest...I have shared so many of the symptoms of thal minors that you have summarized in your posting about the differences between Thal Major, Intermedia [classification] and Minor, in addition to others in this forum with thal. minor that are symptomatic, yet my hemoglobin seems to hover about 13.  However, since no doctor has ever taken thal minor seriously in my case [or even discovered it], then my hemoglobin has not really been evaluated that often to know for sure if it has dropped below 13.

One of the articles I linked to on this forum mentioned many factors that contribute to hemoglobin in testing, and the recommendation to have it checked more frequently than would normally be done...what do you think about this?  I also wondered, do you think the controlled study [isn't it ongoing?] in Sri Lanka noting pyrexia [among other findings] could have a higher incidence of infection in that region of the world because of malaria being endemic and/or do you think it is still relevant for those of us thal minors in other parts of the world?

Also, you have talked alot about NO deficiencies even affecting minors [and yes, this is also something attributed to sufferers of CFS and fibro as well as nutrient deficiencies] -- I wonder if this could be related to the posting in this topic re:  tightness in the chest, I believe, or symptoms of shortness of breath?  One of the things they [doctors] told my mom when they diagnosed her with the chronic thrombosis condition {where clots plug up the pulmonary vessels [but they could not tell her why, only that a certain percentage of all age groups in the world turn up with this condition, like 15%, back in 1996] and you end up in pulmonary hypertension and CHF} was that 'this condition' is most often misdiagnosed as asthma and other 'lung' disorders [UCSD physicians, pulmonologists].  

It was not very long after my mom and her brother [diagnosed with emphysema in late 70's but was never a smoker] four years later that both died of PE complications post surgically, that I discovered the microcytosis on my CBC following viewing a lab test after wrist surgery...their father was being treated for chronic thrombosis in the few months before he died [PE] [Italian immigrant] and they were not sure that they saw some 'spots on his lungs'...  All that to say that obviously because I am a carrier, thalassemia was most probably overlooked here, even if testing available today would not have been available to my grandfather, mom and uncle.  If there was a lottery on it, I would put my money on the intermedia possibility.  

Anyway, I think it is all fascinating if it were not so frustrating -- it is like a giant puzzle with a few pieces connected but most of it is still scattered all over the table!!!

What is astounding to me still {came across this when reading some of the research that Dr. Vichinsky et al have done on thalassemia, I believe} is that thalassemia is expected to be growing health crisis {not only worldwide?} but here in the US because of the influx from certain countries and the fact that that there is not genetic screening/counseling currently being widely done here, nor even recognition in many cases -- as many contributors to this forum have noted... .  

With regard to E-beta [the two most common?], and the wide range of geno/pheno expression makes it even more complex, not to mention the many types of thalassemia and related disorders, let alone CFS and fibromyalgia, arthritis.

It certainly would be most interesting to sort out how to study thal. minor when [positive thinking] get more on board with this....

 

Andy, I see now the posting about anecdotal evidence re: possible relationship between BTM and PHT --  sorry, had not had a chance to read through all postings yet...too late to modify now what I was saying about common denominators with the various sleep disorders commonly found with CFS, among them the obvious issues of poor oxygenation in the body...

Also according to some medical experts in CFS and Fibro with regard to connections to these disorders and arthritis, it is thought that when there is significant inflammation in the body, that ferritin levels may test higher than they actually are; this is interesting for those with minor that also have the low ferritin/iron studies... .