Questions about Thal minor symptoms from newbie

I've read through here about the symptoms of Thal minor which I was diagnosed with back in the early 80's.
I've had no major issues other than a periodic bout of fatigue but within the last two years I've also gotten a disorder called Transverse Myelitis http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm
which is an autoimmune disorder.
Since I got TM I've also been getting treated for what is being called Migraines. They are not "normal" migraines as you would imagine a migraine is. I get somewhat of a headache but I primarily have symptoms of cold sweats at night, fatigue, diarrhea, nausea and vomiting at times. When these episodes hit, I'm usually down on my back for about 3 days or so.
I've felt all along that these haven't been migraines but my neurologist has me convinced that they are. I have been taking medication to lessen them but that hasn't seemed to work as I would expect.
I've done some researching on my own and found that there is a possibility that these symptoms could also be traced to Thalassemia. I know these are pretty generic symptoms but I figured I'd give it a shot.
Does anyone have any insight into this..?
I am going to ask my family doctor to pursue this but I came across this website today and figured I'd ask. My doctor's appointment isn't for another couple of weeks.
Thanks everyone and I'll put up a profile here soon.
Kevin Weilacher
http://dealingwithtm.blogspot.com/

Kevin,

Reading this post and will post some random thoughts that pertain to me. :-)

Symptomatic thal minor.

Almost always tired.

Low immunity - sick often.

VERY prone to migraines - due to exhaustion, stress, sunlight, bright lights, loud sounds, strong smells, low hemoglobin, stomach upsets/irritable bowels (either consti or diarrhea), eye strain, muscle spasms at the back or my neck/shoulders, being very hungry  :-) , and other causes that i cant remember right now.  :-)

I also am gluten intolerant, and i'm not sure if its an autoimmune issue that switched itself on when I was very stressed for several years.

Due to the low immunity I get infections often, with unexplained symptoms that are worse at night, my blood pressure is either normal or very low, and i dont know how many of these things are related.  :-)  Soemtimes at night i'm awake and in discomfort, and i find i need to rub my arms and hands - and i dont even know why. On one such occassion, after ten days of this, i took antibiotics and next morning onwards I had turned into superwoman. (For a few days only).

I will admit the stress can cause migraines and the irritable bowels, and the low bp, and everything else. But I also know it is not the ONLY cause.

Sometimes I have a very rough time struggling with everything, but there is no discomfort, either in my head or my tummy or anywhere else.
 :-)

At times i feel very warm when no one else does, and when its even slightly cold, i feel very cold.

Now - i attribute ALL these problems to my thal minor, till i am proven otherwise.  :-)

Oh yeah, i also had to go through the trip where the doctors think i'm depresssed/nuts/hypochondriac/bipolar/etc etc.  They would expect antidepressants will CURE everything i complained about.

Apparently it is also considered abnormal to be sad after one's mother passes away. I went through that several years ago, and no one cared about my actual medical problems since it was attributed to my grief.

Life is such, but like i said earlier, Smile even when you cant. It works wonders. Read funny books, watch funny movies, if you have loving friends, poke some caring humour at them too. I think it all releases happy hormones that help your body heal.

Each time i get a bad thought in mind, i quickly change the topic (in my mind). On really stressful days i work at Sudoku.  :-)   Some of the puzzles are so tough i forget what i was worrying about.

I dont say its easy at all. But i try. And yes, I smile all the time now. :-)

Regards.

Great advice.. I too get many of the above mentioned symptoms..some days better than others and it can be hard at times to keep up with everyone during day to day things...but keeping a smile on with a good outlook DOES do wonders I must agree

A good friend always told me... one of two things actually when I worked at a very labor intensive job he said either "Grin and bear it" or "Let it roll off like water on a ducks back"...simple yet good advice

Hi everyone!  Another newbie here...

My husband has thal minor, when he was 10-15 years old he had several “fainting spells” and other complications.  At the time he was given supplements.  Which his family found out do not work well for him.  From what I have been told when they gave him magnesium he became very angry/mean.  They did find out that he had an infection in his tonsils and had them removed.  Once removed he seemed “normal” again.

He’s always had trouble sleeping (and when he finally goes to sleep he wakes up constantly).  He didn’t really show any other symptoms until the past few years.   His doctor now thinks he might have sleep apnea but he has been unable to take the test due to having severe anxiety/panic attacks (as many as 6-8 attacks in the span of 1-2 hours during which his blood pressure drops).  He also has diarrhea quite often as well as depression that has been steadily getting worse.
 
So far his doctor has given him meds to help him sleep, for the depression and for the anxiety/panic attacks (he also takes meds for allergies).  We have found that if he doesn’t exercise at least once or twice a week he is more prone to anxiety/panic attacks.  But after taking the meds for the last 2-3 years he doesn’t feel like they are helping as much as they used to, on top of a highly stressful job we just don’t know what to do anymore…we tried making an appointment with the “blood specialist” that we were referred to by his primary doctor but he only looked at my husband’s last blood test told him he was fine and didn’t need to be seen…any idea’s on where to go from here? Does anyone have doctor recommendations in the Southern California area?

Hi Lisa,

Your husband has many problems, some of which may be related to thalassemia minor, such as the fainting spells. I am very curious about the supplements he received during this time and what they consisted of, as excess magnesium is extremely rare since the body will normally excrete any excess. His various problems may suggest a mineral deficiency or imbalance and thorough testing by a hematologist familiar with chemical imbalances in the body might be a good place to start. I don't know any doctor in particular, but often the major university medical centers are a good place to look. Because there are physically measurable symptoms like the drop in blood pressure, it should be investigated, as it can't "all be in his head" as some doctors may want to think. Testing for various mineral levels, including iron, magnesium and calcium would be recommended, as well as his vitamin D level. I feel that a medical approach is necessary and that the approach using antidepressants is just ignoring his true problems. Also, do you know what his typical hemoglobin level is? Thalassemia related problems in minors tend to occur far more frequently in those with low Hb levels.

Hi Andy,
   Thank you for your input.  My husband was given iron and magnesium supplements (not at the same time). The magnesium made him become very angry/mean so his parents took him off those right away.  Takikng the iron supplments put him in the hospital which was when they found he had a tonsil infection. After having the tonsils removed his fainting spells and other symptoms went away. 

His hemoglobin level is usually between 14.7 - 15.5 (per his blood tests from 2007-2009)

His red blood count always comes back high. From what the doctors said this is not normal for people with thal (7.35 in 2007, 6.9 in 2009) One thing I did forget to mention was the nose bleeds he's been having for the last year or two sometimes 2-3 times a week (not every week though) maybe its connected to the high red blood count? 

I also noticed his MCV and MCH have always came back as low, but it looks as though they are indicators of thal.

I believe my parents might know a doctor who specialzes in mineral deficiencies, so I'll call and see if I can get an appointment.




Lisa

Lisa,

For a thal minor, that hemoglobin level is higher than most, so I don't know if the minor is much of a factor. It might be a good idea to have a group of tests called iron studies to check his iron and make sure it isn't too high. A high iron level could help to explain the high relative Hb level.  If his iron tests do show a high level, hemochromatosis, a disorder in which the body absorbs too much iron from food, should be investigated. Many of his symptoms are associated with hemochromatosis but they are also associated with other problems, so no conclusions can be drawn, but it does give further reason to investigate this if his iron is high.

Hi Andy,

     His iron levels were all within the normal range back in 2007, but his most recent bloodtest done last month stated he has an iron deficiency (but does not note what his levels were at).  When he spoke to the hematologist we were refered to, he said my husbands iron levels were not low enough to cause any problems and no follow up appointment was nessery.


Lisa

Hi Kevin,

may I ask you if you're alpha or beta trait ? I'm only curious.

Best wishes...bolu