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TSH over 100 ?!?!?
Has anyone on here had a TSH of over 100? Mine came back as over 150 which is extremely high with Free T4 level of .20 which is low--thus I guess I have hypothyroidism, which would explain why I've felt so terrible for weeks/months now...to the point of barely being able to drive to work without falling asleep, etc.
Just wondering if others on here had TSH levels over 100 before and what did they do to combat the fatigue until they were able to see an endocrinologist (one that I called didn't have an opening until December--two months away!!!).
I had ultrasound at hospital done today and they said they would send results to my Primary care dr. who would call me re: results.
My mom had thyroid cancer when she was in her 40's and I am almost 31 years old, just had a baby 5 months ago, and thought I was just so overly exhausted over the baby, going back to work, etc. Luckily my OB/GYN noticed my thyroid glands felt really swollen when I was telling her how tired I have been, to the point of crying and wondering what was going on, why couldn't I handle motherhood, why am I so exhausted all the time, gaining weight even though i am eating less, breastfeeding, exercising when i have a little energy, etc.
I'd like to hear other's stories with such elevated TSH levels...what caused such high levels for you? how did you deal with the fatigue until you could see a dr., etc.? what ended up being your treatment, medication, etc.?
Just wondering if others on here had TSH levels over 100 before and what did they do to combat the fatigue until they were able to see an endocrinologist (one that I called didn't have an opening until December--two months away!!!).
I had ultrasound at hospital done today and they said they would send results to my Primary care dr. who would call me re: results.
My mom had thyroid cancer when she was in her 40's and I am almost 31 years old, just had a baby 5 months ago, and thought I was just so overly exhausted over the baby, going back to work, etc. Luckily my OB/GYN noticed my thyroid glands felt really swollen when I was telling her how tired I have been, to the point of crying and wondering what was going on, why couldn't I handle motherhood, why am I so exhausted all the time, gaining weight even though i am eating less, breastfeeding, exercising when i have a little energy, etc.
I'd like to hear other's stories with such elevated TSH levels...what caused such high levels for you? how did you deal with the fatigue until you could see a dr., etc.? what ended up being your treatment, medication, etc.?
Very sorry to hear of your thyroid problem. Now that it has been identified, there are some things that you and your parents need to know to make sure you are adequately treated. Hopefully if that is done you will have a late growth spurt.
So some things you need to be aware of are that a high TSH like yours is likely due to primary hypothyroidism, due to Hashimoto's Thyroiditis. With Hashi's the autoimmune system erroneously identifies the thyroid gland as foreign to the body and produces antibodies to attack and eventually destroy the gland. As this proceeds, the gland produces less and less natural thyroid hormone, and must be replaced with thyroid medication.
There are two main thyroid hormones, T4 and T3. Most of the T4 and T3 in your blood is bound to protein and thus biologically inactive. Only the small portions not bound to protein, thus called Free T4 and Free T3, are biologically active. Of those two, Free T3 is the most relevant since it is used by all the cells of your body and creates the metabolic effect required.
So it is very important that you are always tested for Free T4 and Free T3 (not the same as Total T4 and Total T3) every time you go in for tests. TSH testing alone is not enough, especially when already taking thyroid med.
A good thyroid doctor will treat a hypothyroid patient clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, rather than based on TSH levels. Symptom relief should be all important, not just test results. To understand more about this I highly recommend that you and your parents read the first two pages of the following link in order to know what to expect from your doctor in the way of testing and treatment. It is very important, in order to make sure you get all that you need.
http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf
In view of your age, in order for earliest max benefit to your body, I suggest that you also read the first paragraph in Item 11 on page 13 of the link. It states that, "The aim or dose determination for a patient should be to get the patient on the required or optimum dose as quickly as possible." This is very different from normal practice of starting a patient on a very low dose of T4 med and then re-testing and adjusting in about 3-4 months. That approach will take much too long. You could be started on a much higher dose calibrated to bring your Free T4 and Free T3 above the middle of their ranges, or higher if needed to relieve your hypo symptoms.
Since hypothyroid patients are also frequently deficient in Vitamin D, B12, and ferritin. I suggest that you make sure to get those tested and then supplement as needed to optimize. D should be 50 minimum, and B12 in the very upper end of its range, and ferritin should be 70-100. Deficiencies can cause symptoms and low D and ferritin can also affect metabolism of thyroid hormone.
I have hit you with a lot of stuff here. Don't let it bother you. Just keep reading and learning and hang with us and we will help you get the right treatment.
Of all the things I have mentioned, the most important is to have a good thyroid doctor. That does not necessarily mean an Endocrinologist, just a doctor like I described above. If you will give us your location, perhaps we can suggest a good thyroid doctor in your area, based on recommendations from other thyroid patients.
So some things you need to be aware of are that a high TSH like yours is likely due to primary hypothyroidism, due to Hashimoto's Thyroiditis. With Hashi's the autoimmune system erroneously identifies the thyroid gland as foreign to the body and produces antibodies to attack and eventually destroy the gland. As this proceeds, the gland produces less and less natural thyroid hormone, and must be replaced with thyroid medication.
There are two main thyroid hormones, T4 and T3. Most of the T4 and T3 in your blood is bound to protein and thus biologically inactive. Only the small portions not bound to protein, thus called Free T4 and Free T3, are biologically active. Of those two, Free T3 is the most relevant since it is used by all the cells of your body and creates the metabolic effect required.
So it is very important that you are always tested for Free T4 and Free T3 (not the same as Total T4 and Total T3) every time you go in for tests. TSH testing alone is not enough, especially when already taking thyroid med.
A good thyroid doctor will treat a hypothyroid patient clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, rather than based on TSH levels. Symptom relief should be all important, not just test results. To understand more about this I highly recommend that you and your parents read the first two pages of the following link in order to know what to expect from your doctor in the way of testing and treatment. It is very important, in order to make sure you get all that you need.
http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf
In view of your age, in order for earliest max benefit to your body, I suggest that you also read the first paragraph in Item 11 on page 13 of the link. It states that, "The aim or dose determination for a patient should be to get the patient on the required or optimum dose as quickly as possible." This is very different from normal practice of starting a patient on a very low dose of T4 med and then re-testing and adjusting in about 3-4 months. That approach will take much too long. You could be started on a much higher dose calibrated to bring your Free T4 and Free T3 above the middle of their ranges, or higher if needed to relieve your hypo symptoms.
Since hypothyroid patients are also frequently deficient in Vitamin D, B12, and ferritin. I suggest that you make sure to get those tested and then supplement as needed to optimize. D should be 50 minimum, and B12 in the very upper end of its range, and ferritin should be 70-100. Deficiencies can cause symptoms and low D and ferritin can also affect metabolism of thyroid hormone.
I have hit you with a lot of stuff here. Don't let it bother you. Just keep reading and learning and hang with us and we will help you get the right treatment.
Of all the things I have mentioned, the most important is to have a good thyroid doctor. That does not necessarily mean an Endocrinologist, just a doctor like I described above. If you will give us your location, perhaps we can suggest a good thyroid doctor in your area, based on recommendations from other thyroid patients.
1 Comments
I would love to find a good thyroid doctor in my area longmont, Co.80504 One that might be welling to test free T3 and free T4 my TSH is 100.0, can you help me
I'm 16 years old and have always been extremely fatigued, sensitive to cold, very short and have had problems with the development of my teeth. My orthodontist seems to not even be concerned but after telling my doctor during my last physical she ordered a blood test right away. Called me back the next day saying I have hypothyroid. My tsh levels were above 100 and the doctor said that this means I have had this condition for around 7 plus years, which explains a lot. This severely affected my growth because I am 4'9 and am estimated to have been at least 5'4. I just don't understand why this wasn't caught earlier on. And I would like to spread awareness because I am one of those cases where I developed this disease as a child and am still battling.
1 Comments
And as far as treatment goes I have regular check ups and am slowly increasing the dosage of levothyroxine pills. I also have other prescriptions from my doctor to keep my growth plates open and a growth hormone as this has extremely impacted my growth.
Mines is 446 and I do not have symptoms either. My doc rushed me a endo appointment but that's not until the 12/23. Will my nmber keep climbing in the mean time?
1 Comments
My tsh is 100 and t4 is 21. Please give any advice is this ok
We would like to help if possible. Please post your last several sets of thyroid related test results and reference ranges shown on the lab report. What is the 229 number you mentioned? What is your daily dosage of Synthroid?
I have suffered from severe thyroid problems for over 20 years now. I have had every drug in my body available along with undergoing chemo and radioactive medicine. I can not have a thyroidectomy because of the glands being wrapped around my vocal cords. I take my meds daily but Synthroid does not work alone for me and the drug they had me on they took away. I have almost passed from this disease and with my numbers being 229 right now, it is amazing to what I can do and what I can not do. I am up every day with my 3 1/2 year old and tired and dragging and all but still motivated. I have been to Endrocrinologists and I amaze even them. I am currently trying to see a new Endrocrinologist and seeing what else can be done. High cholesterol runs with thyroidism along with the dizzy spells, fatigue, weight gain, and everything else. Hope you get yours under control!
Even though TSH is a poor diagnostic for thyroid issues, with a TSH level that high it warrants further testing. I would suggest that you test for Free T3 and Free T4 (not Total T3 and T4), to determine if you have low- in- the- range levels, which usually lead to hypo symptoms later. Since high TSH levels are frequently associated with Hashimoto's Thyroiditis, you should also test for Thyroid Peroxidase antibodies and Thyroglobulin antibodies. You need both tests to check for Hashi's.
When you have further test results, please post, along with reference ranges shown on the lab report and members will be glad to help interpret and advise further.
When you have further test results, please post, along with reference ranges shown on the lab report and members will be glad to help interpret and advise further.
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