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In 1997 (around the end of the year) I was diagnosed with…

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In 1997 (around the end...
In 1997 (around the end of the year) I was diagnosed with Graves Disease. I developed a huge goiter. In 1998, I had a Thyroidectomy (she left a little at my para thyroid). Eight months later RAI because what little was left was still over producing. All through the years my thyroid has been a roller coaster. But in the past 5 or so years it has gotten much worse. I can't lose any weight no matter what I do. If I do lose some with in a few months I have gain it back plus some. My TSH level goes from hypo, to hyper with only a 25 mcg increase/decrease. I have found a nurse practitioner who will listen to me and try things that I have researched. All of the other doctors told me that my thyroid numbers were fine (just my TSH cause they didn't believe in the other tests) and tried to put me on antidepressants or told me I was just getting older. (I will be 40 in Oct) Just in this past year, my TSH has gone from one extreme to another, I am on Cytomel. But, just to function everyday, I am on Welbutrin, Adderal, and Cytomel. Still, I can not lose any weight, wake up just as tired as I was when I went to bed, hair loss, very sensitive to temperature, I can't even hold the brush long enough to dry my hair. My muscles are so fatigued. The test before last my RT3 was 401 and this time it was back to normal. I have read so much I don't know what to tell my dr to do anymore. I just know I don't feel well. I am in Spartanburg SC and I have only found one Dr that looks promising and she is not taking new patients. Help!! Kellie
Submitted: 6 years ago.Category: Endocrinology
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Answered in 2 hours by:
3/13/2012
Endocrinologist: Dr. David, Other replied 6 years ago
Dr. David
Dr. David, Other
Category: Endocrinology
Satisfied Customers: 49,761
Experience: Experienced physician, undergraduate studies at MIT, studied Engineering, qualified to answer your questions.
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This is Dr. David

I am so sorry that you are going through this.

with such muscle weakness, I don't think this is a thyroid issue. I think you need to consult a neurologist and a rheumatologist. this could be an autoimmune issue or a neurology issue such as Guillain–Barré syndrom.

there are infectious and neurological causes of muscle weakness as well. almost all of the causes can be tested for and treated. Here is a good article and a big list of things to test for.

http://www.aafp.org/afp/2005/0401/p1327.html

take the article to the specialist above and ask for testing to find the cause. I have a feeling it is not the thyroid which is the problem.
Dr. David
Dr. David, Other
Category: Endocrinology
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Customer reply replied 6 years ago
Relist: Inaccurate answer.
I want to know about my thyroid...not my muscle weekness. It may not be related, i get that, but I have bigger issues than that, which are listed.
Endocrinologist: Dr. D. Love, Doctor replied 6 years ago
Dr. D. Love
Dr. D. Love, Doctor
Category: Endocrinology
Satisfied Customers: 19,645
Experience: Family Physician for 10 years; Hospital Medical Director for 10 years.
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Can you provide the results of the entire thyroid test?
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Customer reply replied 6 years ago
I only have my last test results with me. I have others at home. I can tell you on 2/12/12 my results were: TSH .052 uIU/ml; T4 10.8 ug/dl; T3 uptake 29%; Free thyroxine index 3.1; reverse T3 serum 26.9 ng/dl
I was on 169mcg synthroid
I am now on 150mcg synthroid and 25mg cytomel
6 weeks Prior to that test, on 175mcg synthroid my TSH was .014 And
6 weeks Prior to that my TSH was 7.44 on 150mg for this test...my reverse t3 was in the 400's. my ft3 was about 2.9. I was on 20 mg of cytomel that this time.
This yo yo has been going on for about 2 years. In the past it would go crazy about once a year.
Customer reply replied 6 years ago
I only have my last test results with me. I have others at home. I can tell you on 2/12/12 my results were: TSH .052 uIU/ml; T4 10.8 ug/dl; T3 uptake 29%; Free thyroxine index 3.1; reverse T3 serum 26.9 ng/dl
I was on 169mcg synthroid
I am now on 150mcg synthroid and 25mg cytomel
6 weeks Prior to that test, on 175mcg synthroid my TSH was .014 And
6 weeks Prior to that my TSH was 7.44 on 150mg for this test...my reverse t3 was in the 400's. my ft3 was about 2.9. I was on 20 mg of cytomel that this time.
This yo yo has been going on for about 2 years. In the past it would go crazy about once a year. I just accepted answer instead of reply...what do I do?
Endocrinologist: Dr. D. Love, Doctor replied 6 years ago
If you want the rescind the accept of the previous answer, you would need to contact customer service by sending an e-mail to***@******.***. If you find my answer helpful, you can ask customer service to apply the accept to my answer.

There are several general comments about the lab work.

First, it is true that the TSH is the most important number on the profile. There are studies that show that many people on thyroid replacement do better with a TSH low in the normal range. Therefore, the first goal is to achieve a TSH in the normal range, but if there are any remaining symptoms, trying the achieve a TSH low in the normal range is appropriate. From this perspective, a TSH of 0.5 is good.

Although the TSH is the most important number, that does not mean that the other tests are worthless, but it is worth commenting on the T3 uptake and free thyroxine index. It is true that the majority of thyroid hormones (both T4 and T3) are bound to protein, and it is the portion that is not bound that is active, so a measure of the hormone that is unbound has value. The T3 uptake is a measure of protein binding that is then used to calculate a free thyroxine index, an indirect measure of unbound T4, and for many years, this was the best measure of unbound T4. However, there is the technology to now measure the free T4 and free T3 directly, so if it is desired to measure the amount of free hormone, most doctors will perform the direct test, rather than the free thyroxine index.

In someone that is having difficulty in maintaining good control of the level of thyroid hormone, there are several factors to consider. First, it is important to keep taking the same brand name of the drug. There are generics available, and will work well for most people. But some people are more sensitive to minor variations in drug contents, and the brand name is ***** ***** for these individuals. It is also true that variations in absorption from the gut, protein levels in the blood, hydration status, and kidney function can cause fluctuations in the levels of thyroid hormone, so when the levels of thyroid hormone are difficult to stabilize, it would be appropriate to assess whether there are any conditions that could affect these factors.
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Customer reply replied 6 years ago
Ok, so how would I determine what conditions we need to look for? I know I am hydrated. I also know that if you have had an autoimmune disease it is likely to develop another. My grandmother and my nephew have Celiac and my cousin has chrones. Could Gluten be a culprit?
Could this mean that I have trouble converting t4 to t3? I have also read about thyroid tissue resistance (I think that is correct). I have read so many things about the thyroid until I don't know what pertains to me anymore. I have got to figure out how to lose weight. My bp is high, my cholesterol is high, my legs swell, all of the symptoms. could adrenals be a factor? Cortisal? I don't know what to test to eliminate and I don't want to test things that do not need to be tested. About the weight, I have tried diets, eating healthy, exercise 4 times a week weights and cardio 1 1/2 - 2 hrs each time, not a pound lost not an inch gone. Once was on Addepex for 6 months and only lost 13 lbs (gained 8 back in one week because of my thyroid).
Endocrinologist: Dr. D. Love, Doctor replied 6 years ago
There are blood tests that can assess protein level, nutritional status, and kidney function. The screening tests would be included in a general chemistry profile, and further tests can be done depending upon the initial results. It is possible, albeit rare, for persons to fail to convert T4 to T3, but in these people, the brain perceives the body as being hypothyroid, so the TSH will be elevated. Similarly, the TSH would be more elevated in persons with thyroid hormone resistance. If there is any question, that is one of the reasons to measure a more complete thyroid profile, including the free T4 and free T3. It is possible that adrenal disease can contribute to obesity, and measuring cortisol level would be the initial test to look for this problem. Another medical condition that can contribute to weight gain is polycystic ovary syndrome, so an evaluation by a Gynecologist may be helpful. It is worth noting that the vast majority of persons that struggle with being overweight do not have an underlying medical condition that is contributing to the problem; it is worth considering whether one of these conditions are present, but the evaluation will be negative in the vast majority of persons. An Endocrinologist and Gynecologist would be the appropriate specialists to see for evaluation of these disorders.
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Customer reply replied 6 years ago
The problem I have, which is the reason for the questions, is I can not find an Endo nor a MD that will listen. They blow me off. They tell me to stop reading things or that it is in my head. I know how I feel, I know that I should not be this tired all of the time. I shouldn't sleep 15 hrs in one day. I know that getting older results in these things, but I consider mine to be extreme. I forgot to mention that I had 3 strokes in 2004. Which, was found because my thyroid was so messed up...again, that my dr ordered a MRI to see if I had a tumor on my pituitary gland. Didn't find the tumor, but found the strokes. Neros don't know why I had them. No reason. at that time, I didn't have high BP. 2 years after that is when my BP started rising.
Anyway, I have never had problems before loosing weight. I will take this info to my Dr and let her evaluate
Endocrinologist: Dr. D. Love, Doctor replied 6 years ago
There is no magical answer to find an Endocrinologist that will listen to you. However, if not already done, it would be reasonable to consider seeing an Endocrinologist at a major teaching hospital/medical school. Physicians at teaching hospitals have more experience in dealing with difficult diagnostic situations, and there may be new methods under development that a community specialist does not yet have at their disposal.
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