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Looking for Answers

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8 years 11 months ago #49168 by AustinsArmy03
Looking for Answers was created by AustinsArmy03
My son was diagnosed with Chronic ITP at age 3 in October 2006. Last year he was finally placed on remission status, to which I was immensely relieved. It's been a long hard road. The doctor called at 10:00 pm that evening after taking him in because of excessive bruising and petechiae and said that he thought Austin had Leukemia. Being a single mom with a 3 year old and a new born, I was devastated. So I was waiting for the day when Austin's Hematologist said he was in remission and we didn't have to return unless he had any future problems. This past Friday I took him to our family doctor (the same as in the beginning) because he's been extremely tired, headaches, and just not "feeling good". So he ordered lab work. They called me this morning and informed me that his TSH thyroid levels are extremely low, but the gland is reading at normal levels. He ordered another lab, just in case there is an error, and will follow up with a CT, and then we will be returning to the same hospital that took care of Austin's ITP. I have spent hours today searching the Internet for information. And what I have found is that when there is hypothyroidism that is more caused by the pituitary gland and not the actual thyroid gland, then it is usually due to an autoimmune disorder. Well that is what ITP is, right? An autoimmune disorder. If anyone has experienced this, what is the likelyhood that his ITP will come out of remission?

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 11 months ago - 8 years 11 months ago #49179 by Sandi
Replied by Sandi on topic Looking for Answers
I'm not sure what you mean by this "his TSH thyroid levels are extremely low, but the gland is reading at normal levels." Usually, hypothyroid is diagnosed by high TSH levels. I don't understand 'the gland is reading fine".

Hypothyroid can be caused by Hasimoto's which is an autoimmune disorder. My daughter has Graves Disease which is the opposite (hyperthyroid). Neither are direct problems with the pituitary; it's the thyroid itself.

Do you have any of his results; the actual numbers?

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8 years 11 months ago - 8 years 11 months ago #49186 by Ann
Replied by Ann on topic Looking for Answers
I'm guessing the idea is that as TSH is regulated by the pituitary, it can be low if the pituitary is not working properly. That would generally be shown by a low T4 and a low TSH.

I wouldn't say the cause is usually autoimmune although that is possible. Either way it would probably not affect his ITP remission which is completely separate. MRI is usually the scan of choice for pituitary issues so don't be surprised if that is the next step. Until last month I worked in MRI and have seen a lot of pituitaries scanned.

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8 years 11 months ago #49188 by AustinsArmy03
Replied by AustinsArmy03 on topic Looking for Answers
I guess I'm more confused than ever now. What I meant by the TSH levels are very low and the other levels are normal, is the the pituitary gland that omits the TSH hormone "count" was very low, and the actual thyroid gland was omitting normal levels of the thyroid hormone. That is what the doctor told me. He said, "I have more questions than answers at this point." He doesn't understand, he's not sure if it will re-trigger the ITP, basically he doesn't know. He was just hoping that the lab made a mistake and put a decimal in the wrong place. I'm still waiting for the results. And if the TSH levels are supposed to be high with hypothyroidism and not low, why is he displaying symptoms of it. They are checking his platelets also.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 11 months ago #49191 by Sandi
Replied by Sandi on topic Looking for Answers
When TSH measures high, a doctor sees that the thyroid gland is not producing enough thyroid hormone, thus he or she can assume a person has hypothyroidism. So, higher TSH levels typically suggest hypothyroidism.

If the thyroid gland is producing too much thyroid hormone, the TSH levels may be much lower than normal, suggesting a patient has a condition known as hyperthyroidism, or high thyroid function.

ezinearticles.com/?Hypothyroidism-Levels---What-Are-Considered-Normal-Thyroid-Levels?&id=5035866

They will need to do other tests like checking for antibodies. My daughter was diagnosed based on her TSH levels and antibody levels. That will show if it is autoimmune or not. An MRI may be down the line if autoimmune factors do not show up first.

www.webmd.com/women/tc/hypothyroidism-exams-and-tests

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8 years 11 months ago #49193 by Ann
Replied by Ann on topic Looking for Answers
If the pituitary wasn't secreting TSH then the thyroid wouldn't be doing anything which is what I was describing before. I think you need an endocrinologist to work it all out.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 11 months ago #49198 by Sandi
Replied by Sandi on topic Looking for Answers
Agree!

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8 years 11 months ago #49214 by AustinsArmy03
Replied by AustinsArmy03 on topic Looking for Answers
I still haven't received the lab results yet. However, the doctor did go ahead and refer him to an endocrinologist.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 11 months ago #49215 by Sandi
Replied by Sandi on topic Looking for Answers
Good, you are on the right track! Do your research too. My daughter has had problems with many of her Endo's and has changed about 7 times in the past 9 years. They are not all created equal. Too many of them go by textbook and do not pay attention to the individual's symptoms.

This message board helped me out a lot when my daughter was diagnosed. It's mostly about Graves, but they can help with hypo also.

www.elaine-moore.com/Forums/ActiveForums/tabid/323/Default.aspx

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