These forums aren't helpful... NOT!

---Rant Mode On---

According to one doctor I visited, forums like these aren't helpful.  You see, when we join forums like these, we read about symptoms other people are having and then our subconscious mind goes to work generating these same symptoms in ourselves.

So, nobody here has any genuine symptoms.  They are all self generated because we read this forum.  Wait a minute....  Who started the first post?  The first post must be like a vampire.  If we can find the first post and kill it, then maybe all of our symptoms will go away! 

Sometimes I really hate modern medicine.  You can't even educate yourself on your own illnesses without doctors labeling you as self-deluded.  Never mind that the symptoms you exhibit pre-date finding this forum.

---Rant Mode Off---

As a note, I contacted the Cooley's Anemia Foundation to ask if they had any studies contrasting the oxygen carrying efficacy of Thal Minor hemoglobin vs normal hemoglobin.  I have this theory that since thal minor hemoglobin has abnormal morphography it may affect either the uptake or the release of O2.  It appears however that such a study has not been done.  Does anyone here know of any such studies?  I figured the people at the Cooley's Anemia Foundation would be the experts, but they are clearly (and appropriately) focused on Thal Major.

I'm just frustrated that the physicians I have seen won't even acknowledge thal minor as an anemia, simply because they have no treatment for it.

The three doctors I have discussed this with simply do an Hg count and say "It's low, but not low enough to cause problems."  The running assumption of course is Hemoglobin is Hemoglobin is Hemoglobin.  I just doubt this is true.

EMA

The doctor is making an assumption which in order for it to be true, would have odds somewhere around the same as winning the lottery without buying a ticket. From the very first time I heard about thalassemia from my thal minor employee, it has been the same story over and over, whether I am told in person, told through this group, told in emails, told on Facebook and even in phone calls from thal minors, I am always told the same thing. Believe it or not, not all of these people have experience with online forums. My employee, who is in his 50's told me about his experience as a child. This would be in the late 1950's. At age 5, the doctors wanted to remove his enlarged spleen but opted for one year's bed rest! No symptoms? Lisa's mom told me how her hematocrit was generally around 30-32, and that she was always tired. Person after person comes to this group and posts about their condition without any prior experience being here. They aren't making it up. And you are right about CAF. They do a great job for thal majors but the official line is "thal minor has no symptoms" which helps keep their workload within the realm of reason, but does nothing to help minors. I also can't blame them, because the problems of majors are overwhelming.

Whether doctors want to accept that minors can have symptoms or not, patients need to continue to tell their doctors that their health issues may be related to thal. It is extremely frustrating to hear a doctor talk such nonsense, and the condescending attitude really is a bit much. Doctors seem to believe that only by going to medical school can one learn anything about health and illness and we know this isn't true. I am self taught about thalassemia, yet I hold my own in conversations with top thal specialists. People can learn and most importantly, they can learn their own bodies and it isn't all in their minds, and I think it's silly to believe that chronically low hemoglobin levels will not affect the health. They do. Maybe doctor's wouldn't have to answer so many questions if online forums didn't exist but people do have a right to learn about their health and it shouldn't be left to some private club to decide if they get help.

Huh,tell me about that 

As a thal minor,i've had issues whole my life,now a days they are a bit worse for some unknown reason,i couldn't spent more then half a day without getting tired,my feet hurt on daily basis,i get head aches which will leave me feeling dizzy,palpitations,numbness and what not.

But for doctors,i am just another nut case  .

Zaini.

i think the behavior is very natural yet unnecessary. When you try to tell an electrician how to connect wires, tell mechanic whats is the cause of car problem, and try to tell doctor about the reason of symptoms, they all get annoyed. I've seen professional jealousy between doctors and they try to negate each others diagnosis. That is what we see in movies when someone argues with cop and he says "Don't try to teach me law".

I have seen won't even acknowledge thal minor as an anemia, simply because they have no treatment for it.

Maybe doctor's book had a page missing 

I have been a thal major all my life, yet only last year I entered a forum about thal.

In my opinion, this is a very informative forum and people participating do their best to share info, always mentioning that a doctor's opinion comes first and every patient is to be treated differently.

I wish TIF and other local associations did the job Andy does, always informing and caring about thals.

Lena.

 

Maybe doctor's book had a page missing 

Tariw bro ,
i think not only page but the whole chapter of Anemia is mssing to his ( doctor's ) book ....

These forums aren't helpful...  NOT!

i completely dis-agree with this statement ....

Umair

When a doctor tell you that your daughter has only 14-15 years of life as a thal major (in 21st century), they keep prescribing heavy doses of iron to thal minors for anemia. I agree they know nothing about thalassemia.

Most doctors even don't consider thal minor as a problem, yeah right........

Please don't talk to general physicians or family practice doctors about thal, they know rats.............

I was also amazed at another "thing".  I thought I had the enlarged spleen symptom going on because of a dull ache on my left side.  As it turns out, it is probably diverticulitis because the discomfort is too low to be the spleen.  So I asked my doc; what do I do about it?  I also asked him about a few other aches and pains I've been experiencing for years.  Keep in mind, I haven't been to the doctor for a while because I'm never satisfied with the treatment, or lack thereof. 

In any event, I was basically given a version of the old Groucho Marks bit:
Groucho:  Hey doc, it hurts when I do this
Doctor:  Then don't do that!  That will be $50 please.  Pay the nurse on your way out.

How many times have you seen some tragic story about someone who passes away from some disease.  The person usually had some minor symptom like a sore throat.  The media pundit usually brings some doctor on who insists that we should all go to the doctor regularly so things like this don't slip through the cracks.

So then we do go, either for some thal related reason or something else.  We then get the groucho bit.  So if we don't go, we should have, and if we do go, then our problems are all in our head.

I was basically told to live with the aches and pains and fatigue.  It's all part of growing old.  At that point it occurred to me:  Dis-ease has kind of become the norm.  The guy didn't even tell me to eat more fiber for the diverticulitis.  I get to watch commercials for restless leg syndrome and I'm told to ask my doctor about it.  That's because the can give me a pill for that.  Thal Minor on the other hand:  Can't cut anything out, and there is no pill to make it better.  Must be an overactive imagination.

Someday I'll post something other than a rant.  I promise.   

@ Enlightenmealready ,
well,, i got to nkow aboutOsteoCare to this forum and when i took that to my doctor she asked me to where i found this medicine she was very happy to see that mediicne she told me to start it she told me that it has everything that i (Umair) needed Calcium, Vit-D,  magnessium and zinc ... she told me its a very good spplement for me  .... soo i think that this forum is very usefull ... bfore that i was using a vey common and largely saling supplement that has ony 125mg calcium and 400mg vit-d ..... i asked to my chemist abt Osteocare and then i got that ... Andy is absolutely right ....

Try asking a doctor for a supplement recommendation. You will in most cases be given a prescription for an over-priced poor quality product. Ask here and you will find advice from real people who have found good products for their children and themselves. These current posts are such a good example of group thinking.

but in this case my doctor is very wise she always prescripted vit-d for me but not mentioned any supplement by specific company , so the choice was upon me .... she alwasy said to me that you can take any vit-d tablet when-ever i asked that i want to change my supplement .. it was my chemist who was giving me D-calc that is cheap in price ... instead of giving osteocare like good supplement ...  when i took Ostecare to show , she liked Osteocare , and prescripted that by name ..... My doctor is great ...

i watn to mention here that if any doctor is prescripting over-priced poor quality product to you , it is not a doctor's fault ( i think that in this case doctor's fault is less then 20% in all this ) .. it is bcoze of the campaign of medical Rap/Pharmaceuticals , who made to assure doctors that their product is good .. its all bcoze of the money they spent on their marketing campaigns , which is not possible new but good companies ... doctor will know the products those has been presented well , ....

I hope i make the sense , and explained my point of view clearly ....

Best Regards
Take Care
Umair

Umair,

hey buddy, I think that this is where these forums are so helpful.  Because doctors cannot know everything all of the time - it is a good thing that there are people working here to get the latest information all of the time.  Also, here we are able to impart information that comes from the top doctors in the world and it can be accessed by everyone. 

I think that we share a lot of info here - at times we go into a lot of detail.  I think that it is these in depth responses that help us fully understand what is good for us and why.  Having this back ground and understanding enables us to discuss these topics with our health care providers.   

I believe that the forum opens lines of communication between patients and doctors.  Andy and others have shared some life saving information with us. Thank god our doctor is very open to talking with us and that he has accepted the information we have learned here - researched it - consulted colleagues and implemented the changes that we have suggested.  I think that this has made him a better doctor (even though he is an amazing doctor to begin with) - because he uses what he learns from us with his other patients. 
 

Thanks for sharing your positive experiences with this site Enlightenmealready   It reminds us all what we have gained from here. 

Sharmin

I believe that the forum opens lines of communication between patients and doctors.

Yet i am waiting for a single doctor to join this site,some times doctors don't believe what they hear from patients,may be seeing it in black and white will help them understand .

Zaini.