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low thryoid levels with no thyroid
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low thryoid levels with no thyroid

Low thyroid levels mean you have an overworking thyroid. How can I have low thyroid levels when I have no thyroid at all. The doctors have put me through all sorts of tests to find why my levels keep going from hypo to hyper. I'm not  changing my lifestyle habits in any way and taking my hormone supplements as recommended. So, why does it fluctuate?  Could it be bad medication or another gland in my body or the thyroid medication interacting with my pain medications I have to take or what?  Normally pain meds slow the bowels down which could explain the medication being in the intestine longer to absorb more of the medication which could make me go hyper with the low levels, but I have had diarrhea all the time instead. Can anyone give me any insight as to what causes this?  Could it be another gland that is messed up causing the fluctuaion?  It took 9 months to regulate my medication and I had just gotten it level and now my levels are decreasing which means I'm hyper again and I haven't increased the intake of my thyroid medications.  PLEASE HELP!!!!! any insight would be  welcomed.
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Avatar_f_tn
Did you have your thyroid surgically removed, or were you born without one?

Sometimes after a TT, the thyroid tissue can grow back. I had a TT, and for 10yrs I was on the same dosage (200mcg), then all of a sudden I started going hyper, for 3yrs I went from 200mcg, 175, 150 , 125 , 100, back to 125. For the last 3yrs I have been on 125.

They checked to make sure my thyroid tissue was not regrowing, it was not, but they could not explain why I was going hyper (low TSH). My doctor says that over time our bodies change (hormones), so that could have effected my levels.

My experience anyway.  
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Avatar_m_tn
Sounds like you are yet another victim of the tyranny of TSH.  You  didn't say so, but I'll bet that your doctor is deciding if you are hypo or hyper by TSH alone.  This does not work.  TSH is a pituitary hormone that is affected by many variables and it does not correlate well at all with hypo symptoms.   Patients who are on thyroid meds frequently will find that their TSH level needs to be suppressed to the low end of the range or below in order to alleviate symptoms.  A low TSH result does not mean you are hyper.  Only hyper symptoms make you hyper.   A low TSH result really means nothing to you unless it also indicates excessive FT3 and FT4 levels and hyper symptoms.

So,TSH does not correlate very well at all with hypo symptoms.  At best it is only an indicator, to be considered along with the more important indicators, which are symptoms and the levels of the actual, biologically active thyroid hormones, which are FT3 and FT4.  So don't let your doctor medicate you based on TSH.  Instead, insist that you be treated by testing and adjusting your FT3 and FT4 levels with whatever medication is required to alleviate your symptoms.  Many members have reported that they feel best when their FT3 and FT4 levels are in the upper part of their ranges.  

Along that line, I think you will find this article by Dr. Lindner to be worthwhile reading.
http://www.hormonerestoration.com/Thyroid.html
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Avatar_m_tn
Since the pituatary gland excretes the TSH hormone to the thyroid, but the thyroid has been removed, then the thyroid which is no longer there cannot produce the T3/T4 hormones. The thyroxine supplement, drug of choice, only replaces the T4 hormone. So, what does the lack of the T3 hormone produce as for metabolic functions? Why if the T4 normal levels .71-1.85 show up to be 2.95 when my TSh levels drop to 0.01 on a normal scale.  What happens when the T4 increases, does it still cause the pituatary gland to excrete more/less of the TSH hormone? And, how does that relate to the metabolic functions of the body?  When my levels were down to 0.01, I was taking my medication regularly and yet having passing out spells which restricted my driving for over 3 months. Should I expect this to happen again? Also, why at one period of time can his functions go from 0.01 to a normal range TSH and then suddenly fall again to 0.037 using the same doseage of levothyroxine? I've ordered a current T3/T4 study to compare with levels from when I was passing out before. Can this possibly pinpoint whether I have a misfunctioning pituatary gland or hypothalimus gland?  Should I also have my cortisol levels, calcium levels, and male hormone levels checked as well as I understand they all tie in together in regulating the TSH?  I do have a doctor's appt scheduled to follow up again. The only medications I've had changed since I had leveled back off was my prozac was changed to prestiq. I had also read where iodine and aspirins and several other medications could cause the hormones to fluctuate. Should a person with a removed thyroid continue to use salt that is iodized? I also take protonix for peptic ulcer disease and take darvocet for a prior back surgery/pain. If anything, the pain med should be slowing my bowels down, but I've had excessive diarrhea (the only thing indicating hyper episodes). Most the time I'm irritable and sleep irregularly, but when I sleep it is sometimes 14 hour episodes interrupted due to excessive urination. My prostate has also been slightly enlarged and test performed showing it to be noncancerous. I greatly appreciate your input and I definitely will follow up on the suggested article by Dr. Linder. The reason for my thyroid being removed was a diagnosis of Graves disease, but I am beginning to wonder if there was more to it than that. Since Graves is an autoimmune disease, should I also have my immunogobulins checked as well?  Removing the thyroid does not cure Graves disease does it?  Isn't it that the Graves disease is what causes the thyroid to go bad?  Thanks for anymore input you may have as you've sent a very informative response. One doctor told me I should have an I-123 scan to make sure part of my thyroid had not grown back (or had not completely been removed) which could be causing the fluctuations. After all, I have gone for approx 15 years on the same doseage of levothyroxine of 175mcg with no problems up until last September.  I finally leveled back to the midrangenormal in May of this year and now here it is Oct. and I'm going hyper according to my TSH alone.  Will be interesting to see what my T3/T4 levels are. I might add that the MRI scans of my pituatary gland and hypothalamus gland were normal when I had that checked last fall with no enlargment of the glands being shown. TNX so much!
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Avatar_m_tn
So many questions.  I'm going to start answering some of them and try to get to others later in the day.  Hopefully other members will also join in and give you the benefit of their experience.

Normal thyroid tissue puts out thyroid hormone at a T4/T3 ratio of approx. 20:1.  Conversion of T4 to T3 is supposed to take place on an as required basis  With supposedly no thyroid gland tissue left, and taking a thyroxine replacement med, all of your T3 would come from conversion of T4 to T3.  Whether this is actually happening correctly or not can be determined by testing for T3.  Most T4 and T3 is bound up with protein and therefore not biologically active.  Only the free (unbound) portion is active in regulating metabolism and many other body functions.  It is therefore very important to know the levels of free T3 and free T4 (FT3 and FT4).  Free T3 is four times as potent as free T4 and FT3 correlates best with hypo symptoms.  As I have said many times, in my opinion the very best way to treat a thyroid patient is to test and adjust the FT3 and FT4 levels with whatever meds are required to alleviate symptoms.  It should be all about relieving symptoms.  

TSH is, as mentioned, a pituitary hormone that only functions as a signal to the thyroid glands to increase/decrease production of thyroid hormone.   In your case it has no utility.  Why pay attention to it and even try to use it as the basis for medication levels?   Instead you should insist that your doctor test for the actual, biologically active thyroid hormones, FT3 and FT4,  and adjust their level as required to alleviate symptoms.  

Got to go.  More later.

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734073_tn?1278899925
Maybe you need t3. My daughter has no gland (born that way) and did not do well on Synthetic t4 alone. She did not convert enough of it into t3. The T3 is the answer here I suspect!!! Have it checked. If it is low in the range but your freet4 is higher then you have an issue with conversion. We fixed this by changing to dessicated thyroid (Nature-throid) or you can have it compounded until it is availble again by prescription. She is doing so much better on this as she now has plenty of t3 for her body to function correcly! Good luck and God Bless.
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Avatar_m_tn
Next questions.  TSH goes down relatively when the thyroid hormones go up.  So with your T4 being above the range, the TSH would tend  to go toward the low end of the range.

When your TSH was .01, you mentioned passing out.  This would not be due to low TSH.  The absence of the pituitary hormone TSH does nothing to you.  It is only an indicator of how your hypothalamus/pituitary areas are responding to your thyroid hormone levels.  

My turn for  questions.  What medication are you taking now?  Was the T4 test result for total T4 or free T4?  Are the thyroid tests you have scheduled for free T3 and free T4 (FT3 and FT4) or for total T3 and total T4?


No, these tests cannot pinpoint whether you have a pituitary or hypothalamus issue.  At this point there is not enough info to suggest that these are potential problems.  

Regarding your questions about testing for cortisol, calcium and testosterone, to me  you haven't described symptoms that would lead me in that direction at this time.  The most important thing to me would be to test and adjust  FT3 and FT4 levels with whatever meds are required to alleviate symptoms, without regard for TSH.  At that point, if you continue to have symptoms that would suggest the need for further testing.

Regarding some of your questions on Grave's.  Since Grave's causes excessive TSH levels, along with excessive thyroid hormone to be secreted, removal of the thyroid glands effectively neutralizes the problem.  After that, it is a matter of regulating your medication type and amount in order to get your thyroid hormone levels high enough to alleviate symptoms.  Again, at this point TSH levels mean very little and should not be the basis for dosage of meds.  Since you stated that you had been on the same dosage of meds (175 mcg ) for 15 years, what difference does a fluctuating TSH result make to you?  It isn't likely that it is stimulating any natural production of thyroid hormone.  During this time of fluctuating levels of TSH, did the thyroid hormone levels also fluctuate?  I'd guess not.

As far as the effects and interactions of the other meds you are taking I really have no idea about those.

So, in summary, I'd insist that the doctor test and adjust free T3 and free T4 with meds as required to alleviate hypo symptoms.  If you will get those tests done and posted here, along with reference ranges, members will be glad to help interpret.  

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