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Ksee

Member Since 01 May 2013
Offline Last Active Jun 13 2013 05:40 PM
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#866942 Tsh, Why Is It So Confusing?

Posted by Ksee on 05 May 2013 - 07:39 AM

Thanks for the feedback, both of you. Btw, my doc won't test for T3 and T4 because the TSH was negative in his view.

 

As for how I feel, I do have very dry skin, get cold a lot and lately am having a much harder time losing weight. But I am rarely tired and definitely don't have anything resembling constipation. ("Rapid transit system" my doc calls it...) So I never really thought thyroid was an issue until people told me the 2.6 wasn't great. Ksee, any other specifics that come to mind would be great.

Do you have a diagnosis that involves the endocrine system or the thyroid? Are you on thyroid replacements? I can't offer any insight about that number without knowing a lot more and even then, in the face of a Celiac diagnosis, your symptoms may have some overlap.

My best advise is how do you feel? How do you see yourself? Do you think of yourself as a well person with a manageable medical condition or do you see yourself as sick?

If you feel well except for a worry because of a number someone told you is wrong, I think you should continue by working on diet and exercise for now. You can always reassess your situation if things change.

If you see yourself as impaired or sick, or if you think you should be doing better, I would suggest two things. First, tell your doctor that despite treatment, you feel sick. If the doctor doesn't give that the attention you feel it should, the next step is getting another opinion. Don't ask your current doctor to refer you to one of his buddies who will only back him up, but find another doctor by whatever means you have, gather any records needed and get a different point of view.

You always have the right to ask questions until you get satisfactory answers.


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#866940 Tsh, Why Is It So Confusing?

Posted by Ksee on 05 May 2013 - 07:21 AM

Gemini there are a lot of people like me that come from the mainstream, if looking in the right places. I come from a teaching and research environment. Many doctors trained to stay up with the recent knowledge and use creative ways to solve patient problems are found in or come from those environments.

For those who don't live in reach of large cities or research facilities, I would suggest looking at a doctors background and asking about the priorities of their practice. It's not so much a specialty, but a personality type that makes the most difference.

A doctor who's eyes light up when talking about the newest findings and upcoming treatments, who is thrilled when asked to teach why rather that just dole out treatment, is the doctor to stick with. Even if that doctor doesn't have every bit of the latest information now, he or she will listen, admit what they don't know, look for answers and in general be open to our problems. This doctor will be excited to see patients come in because they are looking forward to sharing that new information which is going to help improve lives.

 

Knowledge is always power. Any person who is so insecure as to be selfish and refuse to share that power is not someone I want to trust to keep my best interest in mind. :)


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#866618 I Think I May Have Kind Of Had An Epiphany...

Posted by Ksee on 03 May 2013 - 09:21 AM

Your question is actually a bit complex. First, yeast overgrowth is a problem in many autoimmune disorders. Yeasts are everywhere and when something happens upsetting your digestive system they often gain the upper-hand. You have seen a bottle or glass of beer with bubbles rising to the top. The alcohol and gasses are a result of the metabolism of the yeast. Now imagine what is happening in your gut. All that growth and gas isn't going to produce enough alcohol to offset the discomfort. I am oversimplifying of course and even though this could be the problem, there could just as easily be another answer.

You are having a number of symptoms that could indicate another food sensitivity or a hidden ingredient. As you go along, use only foods known to you and eliminate one of those for a couple of weeks, note any changes and be open to the possibility there could be something other than glutens affecting you.

Yogurt is great, I love it but store bought doesn't always arrive with live cultures. Many brands add ingredients to thicken and stabilize the yogurt during shipping. I make my own at home. It's a simple process and I know the cultures are live because dead probiotics don't thicken and make yogurt. Still, there are fewer bacteria in yogurt than you may need to overcome an overgrowth of yeast and I don't know which probiotic supplements to suggest.

Chronic use of antacids can cause a number of problems in and out of the stomach. The feeling of a need for so many antacids can indicate any number of issues. A doctor will probably want to evaluate for a cause. Celiac causes heartburn but there are a number of complications you don't want to live with if you don't have to. 

There are other problems that can present as little black flecks. Some can't be evaluated or treated with home measures. I think listing your various symptoms and a trip to the doctor could be in order.

Good luck :)


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#866609 My Health, My Choice

Posted by Ksee on 03 May 2013 - 08:32 AM

Emi, I can see you were offered a clear benefit and even though the time was lengthy, was not indefinite. I would never diminish your ability to make the choice that is right for you.

After reading other replies , I believe I would go through testing, even  lengthy testing, if it would help diagnose my child or family member. I would be able to see a clear benefit in that situation. 

I therefore stand corrected, there are situations where testing is beneficial.

I want  everyone  to understand, supporting each individual's choice is as important as supporting our own decision. So often we give ourselves over to the demands of those who don't know us, our lives, dreams and needs. We do what we are told is best without knowing why. 

 Everyone has permission  to make their own choice. I didn't give it to you. It was yours all along. Don't let anyone take that permission away. I will always support whatever choice one person makes to suit their own life.

When we go to a doctor or have a procedure we are asked to sign a permission form. No one emphasizes the importance of that form and if asked, it is explained in negative terms such as "we can't treat you unless you sign the form". Permission forms are actually the signposts of patient power. Treatment and procedures require adequate explanation before these forms should be presented. We should always, stop a minute and think if we have been given understandable reasons of benefit. 

Our power of choice should be shared for good reasons with those who are willing to treat us with the respect we deserve.


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#866456 My Health, My Choice

Posted by Ksee on 02 May 2013 - 03:21 PM

I am a nurse on disability. I have a long history of autoimmune problems and in the last week accidentally realized gluten is causing me problems. Of course I do not know whether it is celiac or gluten sensitivity, I only know that since I started avoiding gluten I am feeling better. I support strong positive relationships between patients and physicians. I strongly advocate patient education and encourage people to become active participants in their own health care.
That being said, all advances in science and medicine have come because someone looked at the status quo and wasn't satisfied. It is our right and responsibility to ask questions and when we are not satisfied with the answers to keep questioning until we find answers. This isn't only something we do for ourselves, but for those who come after us. We have the right to expect attention especially when the quality of our lives needs improvement. Pain and misery deserves the utmost attention. 
I’m reading other people's posts, people who are waiting for specialist appointments and eating gluten. They are miserable. Some are on a challenge but their labs are not reflecting expectations so they continue eating gluten. They are miserable. This is disturbing to me.
Let’s pretend for a minute that we are not dealing with gluten. What if someone bought hand cream and after using it their hands turned red and started peeling. This person goes to the doctor who takes one look and diagnoses Contact Dermatitis. The doctor tells them not to use the hand cream again. Why? When the body starts having reactions to a substance, continued exposure causes more, severe and possibly dangerous reactions. 
The person may now start having reactions to other products that contains lower amounts of the sensitizing agent to which they had not previously reacted. Sensitivities are not static. There can change, develop and worsen, which means if someone is prone to a sensitivity, one day there may not be a detectable problem and next day they have a reaction. After someone has become sensitized, it gets worse until that substance is removed.
I am not going to tell anyone how to manage their life or disease but I will share my plan on the issue whether it is gluten or any other health problem. I will explain my symptoms and history to the doctor, the circumstances of realizing the problem and the effects of my efforts at home. I favor blood tests, biopsies and skin sensitivity testing. However, if I’m asked to continue using something known to cause me health problems, I will consider the benefits. If I decide to return to eating gluten, I am not going to agree to continue past a return of symptoms proving the relationship of diet and those symptoms without the expectation of a clear benefit. I will also expect to be seen by the doctor making that request when my symptoms reoccur. I will not remain avoidably sick for long periods of time.
Chemotherapy is not withdrawn to verify a diagnosis. Insulin is not withdrawn to verify diabetes. If the person can manage their diabetes with other means (diet and exercise) there is not a question if they were misdiagnosed and they are not asked to prove their illness by returning to a previously dangerous lifestyle. Thyroid replacements are not withdrawn just to see what happens. These things are not done because it would put people at risk, it would cause harm. Advocating a course of treatment that causes harm and people at risk is not ethical.
The difference between those conditions and problems relating to gluten are what? The difference is the ability to see the problem in what is called an “objective” manner: in other words, visually, by lab tests, medical imaging studies, and so forth. What a person reports to the doctor is called “subjective” and in the eyes of many doctors, inferior evidence.  
I expect treatment as responsive to my needs in this situation as I would expect for any other. No person would invent symptoms causing such restrictions on their life as avoiding gluten without an actual problem. No person could detect the gluten hiding in foods or the environment allowing a report of a reaction without an actual problem. 
If I am asked to damage my body for the sake of a lab test, my response will be that such a requirement is inappropriate without a clear indication of benefit that outweighs the risk and damage caused. If I have to go farther, I will suggest reconsideration of the ethics involved. Damaging my body for the sole purpose of proving a point is unacceptable to me. 
If I have to say all that to a doctor, they may refuse to treat me. That is always their choice. We all have choices. I do know one thing. This practice will eventually change. History tells me this is true. Physicians bow to patient demands. This is fact but isn’t always a good thing. As patients, we got ourselves into trouble by demanding doctors offer treatment every time we dropped in with a mild virus. Since doctors knew we would go somewhere else if they didn’t comply, they handed out prescriptions for antibiotics until the antibiotics became ineffective. While it is a cautionary tale, this is still a good example of the power of the patient. When used wisely and properly, the power of patient expectations can and  eventually will change medical practice.
In a general practice, people with celiac or gluten problems are a large group and with specialists of gastroenterology, endocrinology and rheumatology the percentages are very large. There are always a few doctors who are willing to step out on limbs for the benefit of patients. After one of these doctors is found and the word spreads, social and financial pressures alone cause cascading changes throughout that community and beyond. 
If I need a cardiologist, I can expect to have the attention of my primary or emergency doctor who immediately finds a way for me to be seen by a specialist. Of course gluten is not as likely to cause death in the short term but I would argue that the relationship between high blood pressure and heart disease is as significant as the relationship of gluten and life altering complications of body systems including cancers of chronic inflammation.
So there isn’t a way to diagnose objectively and differentiate diagnosis? That only indicates an increased need to stay on top of current research and improve use of available measurements. Focusing on the development of tools to discriminate the differences of patient signs and symptoms could span the intervening gap and improve immediate care. 
Some conditions can only be diagnosed by subjective symptoms. When the choice is between listening to a patient or putting that person at risk, there is no ethical room for question. There is not an ethical reason to risk a person’s health,or damage well-being and quality of life if  another option exists. In the wide range of health issues related to gluten, is the quality of care improved by the certainty of knowing the origin enough reason to justify a prolonged illness to obtain a determination? If I am given a valid benefit..... wait, I’m sorry but someone has to chime in here because I sincerely can’t think of a valid benefit. As far as I am aware the treatment is the same, removal of the offending substance.
In medicine there is a saying: Treat the patient, not the machine. Machines can break and lack sensitivity, machines cannot see the big picture. My body can be more sensitive to insult than a machine can measure. Biopsies can become confused and misread, the results can be incorrectly filed or lost in the system of machines. I will be happy with the physician who understands the limitations and fallibility of the health care system, is sensitive to my needs, overall health, well-being and quality of life.  
I wouldn’t continue to use a hand cream causing me to walk around with reddened, peeling, cracked, oozing skin lesions while indefinitely waiting for a specialist appointment or positive lab results. I will decline to eat in a way that causes me to live with pain, diarrhea, constipation, sleeplessness, complications, damage of other body systems and in misery, simply to have medical records reflecting unnecessary determinations. I have nothing to prove to anyone.  
I choose this path for my health now and am unwilling to wait for the medical community in general. I choose to at least begin a trail for those who don’t feel they can speak up. I know others are joining in. This is who I have always been, I see no reason to start changing now. My choice may or may not be right for someone else but will always remain my choice to make.

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