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Hypothyroidism with No Symptoms
I was diagnosed with Hashimoto's Thyroiditis and Hypothyroidism when I was 15/16 years old. I was also told that my pituitary gland was enlarged. At that time I weighed 115lbs, was 5'4", and an active high school cheerleader and basketball player. My menstrual period was very unusual and I was quite fatigued but I was only sleeping 6 hours a night or less and I was 16. Periods aren't always normal. When I was diagnosed my TSH was over 600 (normal .3-3.0). Every doctor was baffled by the numbers and my lack of most of the typical symptoms.
Now 10 years later I am 25 and am now dealing with some odd levels again. Two months ago I quit taking my levothyroixin because I was feeling flushed, warm, tingly, puffy, and just crappy in general. After about a week of no meds I started feeling remarkably better. So I stayed off of the medication for the two months more as a test to see what would occur. (I really wish I could be involved in more medical experiments). I then went to the doctor and explained how I was feeling and they of course checked my TSH. I am 5'4.5" tall and 120lbs and my level is 383 and probably climbing. I was just amazed! I feel great but my levels say I should be feeling otherwise. I am getting married in 10 days so I am stressed but I am happy, excited, and energetic. I get up at a good time and I walk on the treadmill. I go to work. I eat regular meals. I go to bed at a good time. The doctor is equally as puzzled so I am seeing an endocrinologist tomorrow.
Has anyone ever experienced this? Off the chart TSH levels, but no signs or symptoms of the thyroid issues?
((Side note: my companion autoimmune disease is morphea - anyone else out there with this disease?))
Now 10 years later I am 25 and am now dealing with some odd levels again. Two months ago I quit taking my levothyroixin because I was feeling flushed, warm, tingly, puffy, and just crappy in general. After about a week of no meds I started feeling remarkably better. So I stayed off of the medication for the two months more as a test to see what would occur. (I really wish I could be involved in more medical experiments). I then went to the doctor and explained how I was feeling and they of course checked my TSH. I am 5'4.5" tall and 120lbs and my level is 383 and probably climbing. I was just amazed! I feel great but my levels say I should be feeling otherwise. I am getting married in 10 days so I am stressed but I am happy, excited, and energetic. I get up at a good time and I walk on the treadmill. I go to work. I eat regular meals. I go to bed at a good time. The doctor is equally as puzzled so I am seeing an endocrinologist tomorrow.
Has anyone ever experienced this? Off the chart TSH levels, but no signs or symptoms of the thyroid issues?
((Side note: my companion autoimmune disease is morphea - anyone else out there with this disease?))
COMMUNITY LEADER
Unfortunately, doctors are taught that TSH is the gold standard in thyroid testing and many of them won't go off the beaten path when it comes to testing/treating thyroid conditions. No, they were not gathering the correct information. We always have to advocate for ourselves.
I'm glad you liked the endo, but I'm concerned that she's only starting you back on thyroid med and not testing your pituitary gland. With TSH that high, you should be having every symptom in the book, if you're really hypo.
I hope she ordered Free T3 and Free T4, not just T3 and T4, because those would be Total T3 and Total T4, which are considered obsolete. If "FREE" isn't specified for each one, it's total.
When she calls about your labs, do make sure you get the results of all the tests and be sure to get the reference ranges, as ranges vary lab to lab and have to come from your own report. Better yet, ask if she will send you a copy, as you should always keep copies of your labs for your own records. My labs have become the running record of my disease. I write on each one, what med(s)/dosage(s) I was on and what, if any symptoms I had at the time of the blood draw. Once you get those, please post them, here, so we can see what they are. I'm really curious.
I'm glad you liked the endo, but I'm concerned that she's only starting you back on thyroid med and not testing your pituitary gland. With TSH that high, you should be having every symptom in the book, if you're really hypo.
I hope she ordered Free T3 and Free T4, not just T3 and T4, because those would be Total T3 and Total T4, which are considered obsolete. If "FREE" isn't specified for each one, it's total.
When she calls about your labs, do make sure you get the results of all the tests and be sure to get the reference ranges, as ranges vary lab to lab and have to come from your own report. Better yet, ask if she will send you a copy, as you should always keep copies of your labs for your own records. My labs have become the running record of my disease. I write on each one, what med(s)/dosage(s) I was on and what, if any symptoms I had at the time of the blood draw. Once you get those, please post them, here, so we can see what they are. I'm really curious.
I was quite disappointed with this but I was trying to be trusting of the doctors and hoped they were making the right decisions for my health. I moved a year ago so I have been relying on a new pcp who I figured just handled things differently. They obviously were not gathering the correct information.
I went to the endo this morning and she was extremely kind and didn't understand why the pcp hadn't ordered the T3 or T4. I told her that I had asked her nurse as well and she was confused. She's not going to make me come back for another visit but will instead check the levels when the blood results come from the lab and then will call to discuss the next step. Since I cleared the slate by not taking the meds than she feels confident starting me off at 50mcg and seeing how I feel over the next few months.
I am happy to now be in her capable hands because I feel that she is going to handle my health situation in a better way than my pcp.
I went to the endo this morning and she was extremely kind and didn't understand why the pcp hadn't ordered the T3 or T4. I told her that I had asked her nurse as well and she was confused. She's not going to make me come back for another visit but will instead check the levels when the blood results come from the lab and then will call to discuss the next step. Since I cleared the slate by not taking the meds than she feels confident starting me off at 50mcg and seeing how I feel over the next few months.
I am happy to now be in her capable hands because I feel that she is going to handle my health situation in a better way than my pcp.
COMMUNITY LEADER
Last I looked, the cost for thyroid labs (TSH, Free T3, Free T4) is up to about $105.
Still worth the money. If you go to the endo, armed with test results, you might get somewhere.
Still worth the money. If you go to the endo, armed with test results, you might get somewhere.
Cancel your appointment. If "they" are only going to use TSH with a known Thyroid issue then they will NEVER treat you correctly.
you are right. Don't waste your money. if yo uneed to go to a private lab to get your own test done. healthcheckUSA has done the basic thyroid panel of TSH along with Free T4 and Free T3 for I believe $85.
Having and paying for this information versus the cost of gong to an endo who is only going to look at TSH is in my opinion a better option!
maybe you could do both. That is go get our blood work done on your own prior to going to the endo. That way you can go to the endo appointment armed with you own lab results. Just a thought if time allows. Or maybe you could postpone the endo appointment in order for this to be done.
you are right. Don't waste your money. if yo uneed to go to a private lab to get your own test done. healthcheckUSA has done the basic thyroid panel of TSH along with Free T4 and Free T3 for I believe $85.
Having and paying for this information versus the cost of gong to an endo who is only going to look at TSH is in my opinion a better option!
maybe you could do both. That is go get our blood work done on your own prior to going to the endo. That way you can go to the endo appointment armed with you own lab results. Just a thought if time allows. Or maybe you could postpone the endo appointment in order for this to be done.
COMMUNITY LEADER
I don't see how they can possibly think it's not necessary to check FT3 and FT4... they're simply going on the assumption that you're hypo, when you might not be. That's crazy.
Secondary hypothyroidism (disorders of the pituitary gland) generally shows up with normal or low TSH and low free T4.
I requested that my pcp order a blood test for the T3 and T4 but they believed it wasn't necessary. When I made the appointment for the endocrinologist I asked the nurse if they would want the T3/T4 levels and she said the Dr. would want to look at the TSH first and go from there. I am not in agreement with this idea and I am quite disappointed in the lack of desire for knowledge from the doctors. Now I'll have to pay for a basically wasted appointment and another blood draw.
COMMUNITY LEADER
What are your Free T3 and Free T4 levels?
TSH is a pituitary hormone and not always indicative of actual thyroid hormone levels, especially, if you have an enlarged pituitary... Your pituitary gland might not be responding to the thyroid hormones.
Before you do anything else, you need to get Free T3 and Free T4 tested. Those are the actual thyroid hormones and it's very possibly that they are adequate and your pituitary isn't recognizing them.. Having odd periods could also be a sign of pituitary malfunction, or it could be a sign of too little thyroid hormones, but without testing actual thyroid hormones, you have no way of knowing for sure.
TSH is a pituitary hormone and not always indicative of actual thyroid hormone levels, especially, if you have an enlarged pituitary... Your pituitary gland might not be responding to the thyroid hormones.
Before you do anything else, you need to get Free T3 and Free T4 tested. Those are the actual thyroid hormones and it's very possibly that they are adequate and your pituitary isn't recognizing them.. Having odd periods could also be a sign of pituitary malfunction, or it could be a sign of too little thyroid hormones, but without testing actual thyroid hormones, you have no way of knowing for sure.
Interference to thyroid hormone assays is suspected when clinical symptoms do not match biochemical lab results. Interference to thyroid hormone assays may show up with euthyroid (normal thyroid gland function), hypothyroid and hyperthyroid patients.
Causes of interference in thyroid hormone assays include heterophile antibodies (the best known heterophile antibody is human anti-mouse antibodies - HAMA), rheumatoid factor (RF), THAAb (anti-T3 and anti-T4 antibodies), and anti-TSH antibody (TSHAb).
Rheumatoid factor is positive in 15 - 60% of morphea patients.
Causes of interference in thyroid hormone assays include heterophile antibodies (the best known heterophile antibody is human anti-mouse antibodies - HAMA), rheumatoid factor (RF), THAAb (anti-T3 and anti-T4 antibodies), and anti-TSH antibody (TSHAb).
Rheumatoid factor is positive in 15 - 60% of morphea patients.
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