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Hypothyroid with a normal TSH
This is an extensive post but gives many details that I believe are necessary. I have had increasing hypothyroid symptoms for about 3 years with current levels becoming intolerable. After becoming insistant with my doctor he finally started me on levothyroxine 25mcg (TSH has always been normal). After four weeks on this therapy the muscle and joint pain became so bad that I could barely walk. At six weeks my labs showed low FT3, low normal FT4, normal TSH. He took me off the levothyroxine and started me on 5mcg of liothyronine. After two doses I had noticeable relief from the pain (could cut back on the large amounts of ibuprofen) but no other improvements noted. After six weeks of this therapy my labs showed low normal FT3, a drop in FT4 to the bottom of the range and an increase in TSH (still normal though). I visited my doctor and told him that my energy levels were at an all time low. At this point I don't think he new where to go so he put me back on the 25mcg levothyroxine as well as the 5mcg liothyronine and gave me a referral to an endocrinologist.
An interview with the endocrinologist resulted in him stating that I was "clearly hypothyroid" although he was a bit confused about my ultrasound that showed no thyroid abnormalities. A complete set of labs were ordered which came back with FT4 in the normal range, FT3 in the low normal range, TSH normal, TPO antibodies were ok. An ACTH stimulation test showed good adrenal response and no other endocrine problems were found. Please note that I was taking the low doses of thyroid hormone. His assistant called and stated that I was to be released back to the care of my primary doctor.
At this point I was extremely dissapointed and still suffering. My MD is at a loss to explain anything much less offer a solution. I requested a reverse T3 lab be done but this never happened??? Previously when I asked about this his reply was "we don't do that". My continued requests have resulted in a referral to another docter who does do RT3 testing (the only one in my area).
I have many questions about this but the one that comes to the front is why all the mystery about what seems to be a thyroid hormone problem. I seem to have resistance at every step of the way. I called the endocrinologists office inquiring about non-thyroidal illness syndrome and was told that my symptoms were not consistant with NTIS and I was not hypothyroid??? Getting FT3 and FT4 labs ordered by my primary docter was only accomplished because of my insistance???
As for the hypo symptoms. Does anyone have any idea of what is going on? The symptoms at this point have been very difficult to tolerate but I have no choice but to grit my teeth and hope that the next docter has some answers. Patience (and my wallet) have become very thin. Please advise.
An interview with the endocrinologist resulted in him stating that I was "clearly hypothyroid" although he was a bit confused about my ultrasound that showed no thyroid abnormalities. A complete set of labs were ordered which came back with FT4 in the normal range, FT3 in the low normal range, TSH normal, TPO antibodies were ok. An ACTH stimulation test showed good adrenal response and no other endocrine problems were found. Please note that I was taking the low doses of thyroid hormone. His assistant called and stated that I was to be released back to the care of my primary doctor.
At this point I was extremely dissapointed and still suffering. My MD is at a loss to explain anything much less offer a solution. I requested a reverse T3 lab be done but this never happened??? Previously when I asked about this his reply was "we don't do that". My continued requests have resulted in a referral to another docter who does do RT3 testing (the only one in my area).
I have many questions about this but the one that comes to the front is why all the mystery about what seems to be a thyroid hormone problem. I seem to have resistance at every step of the way. I called the endocrinologists office inquiring about non-thyroidal illness syndrome and was told that my symptoms were not consistant with NTIS and I was not hypothyroid??? Getting FT3 and FT4 labs ordered by my primary docter was only accomplished because of my insistance???
As for the hypo symptoms. Does anyone have any idea of what is going on? The symptoms at this point have been very difficult to tolerate but I have no choice but to grit my teeth and hope that the next docter has some answers. Patience (and my wallet) have become very thin. Please advise.
Reporting the latest info.
My recent doctors visit went well. Many things were discussed and I expressed my concern with elevated reverse T3. The doctor was well informed on this matter and ordered the necessary labs.
The results were very revealing.
T3 Free 2.76 [2.57-4.43] pg/mL
T4 Free 0.99 [0.50-3.00] ng/dL
TSH 2.17 [ 0.30-3.00] uIU/mL
These numbers have all come up. Not sure why but the most important is the following.
T3 Reverse 207 f [90-350] pg/mL
This statement was provided with the lab result.
INTERPRETIVE DATA: Triiodothyronine, Reverse
This test was developed and its performance characteristics determined by ARUP Laboratories.The U.S. Food and Drug Administration has not approved or cleared this test; however, FDA clearance or approval is not currently required for clinical use. The results are not intended to be used as the sole means for clinical diagnosis or patient management.
Access complete set of age- and/or gender-specific reference intervals for this test in the ARUP Laboratory Test Directory (aruplab.com).
While the RT3 level is within the reference range the important figure is the ratio between FT3 and RT3. I used the calculator on "Stop the Thyroid Madness" and came up with a 13.3 to 1 ratio. This has to be over 20 to 1.
Another lab that provided useful information.
Testosterone 350 f [280-800] ng/dL
Free Testo 3.3 Lf [5.6-19.0] pg/mL
The doctors that I visited previously had only ordered Total Testosterone and used that result. This was clearly a mistake.
The low Free Testosterone explains many issues I have been dealing with. My hope is that by increasing this level will allow me to reduce or eliminate the antidepressant (Wellbutrin) and anxiolytic (Buspar).
Questions abound. Why were these labs not ordered by my previous doctors? Do they not know about these things? Should they go back to medical school?
I rely on medical professionals to manage my health care. Up to now this has not happened.
My recent doctors visit went well. Many things were discussed and I expressed my concern with elevated reverse T3. The doctor was well informed on this matter and ordered the necessary labs.
The results were very revealing.
T3 Free 2.76 [2.57-4.43] pg/mL
T4 Free 0.99 [0.50-3.00] ng/dL
TSH 2.17 [ 0.30-3.00] uIU/mL
These numbers have all come up. Not sure why but the most important is the following.
T3 Reverse 207 f [90-350] pg/mL
This statement was provided with the lab result.
INTERPRETIVE DATA: Triiodothyronine, Reverse
This test was developed and its performance characteristics determined by ARUP Laboratories.The U.S. Food and Drug Administration has not approved or cleared this test; however, FDA clearance or approval is not currently required for clinical use. The results are not intended to be used as the sole means for clinical diagnosis or patient management.
Access complete set of age- and/or gender-specific reference intervals for this test in the ARUP Laboratory Test Directory (aruplab.com).
While the RT3 level is within the reference range the important figure is the ratio between FT3 and RT3. I used the calculator on "Stop the Thyroid Madness" and came up with a 13.3 to 1 ratio. This has to be over 20 to 1.
Another lab that provided useful information.
Testosterone 350 f [280-800] ng/dL
Free Testo 3.3 Lf [5.6-19.0] pg/mL
The doctors that I visited previously had only ordered Total Testosterone and used that result. This was clearly a mistake.
The low Free Testosterone explains many issues I have been dealing with. My hope is that by increasing this level will allow me to reduce or eliminate the antidepressant (Wellbutrin) and anxiolytic (Buspar).
Questions abound. Why were these labs not ordered by my previous doctors? Do they not know about these things? Should they go back to medical school?
I rely on medical professionals to manage my health care. Up to now this has not happened.
I would really appreciate your keeping us informed. I don't think we've ever had a member posting as they went through this protocol, and it would be really great to have a thread that others could read so they'd know what to expect.
Best of luck with your new doctor and your RT3 test...
Best of luck with your new doctor and your RT3 test...
I understand the concerns related to using 75mcg liothyronine and the importance of having a doctor on board with this protocol. It's unfortunate that the vast majority of practitioners will not even look into this, including my own doctor. I credit him for at least looking up a doctor that does do RT3 labs and directing me to him. I just wish this had happened a year ago.
I have an appointment next week and am hopefull for a positive result. I'll get back and post after that visit if you would like to no how it goes.
I have an appointment next week and am hopefull for a positive result. I'll get back and post after that visit if you would like to no how it goes.
I think the units used for different tests depend on the amount of the substance we expect to find. The effort is to get a result that is easily readable and understandable without having to count zeroes to the right of the decimal point or have too many commas to the left. Something that is in very low concentration has to be expressed in different units from something with a high concentration. Of course, add to that that different countries use different units as well. No, don't leave it to your doctor to interpret...
75 mcg is a lot of T3, something equivalent to 300-375 mcg of levo. I understand the theory and the protocol, which makes logical sense. However, I also think it sounds a bit risky. I'd want to be working with a doctor who has some experience with it. Apparently, you want to be sure your adrenals are in really good shape before attempting it.
75 mcg is a lot of T3, something equivalent to 300-375 mcg of levo. I understand the theory and the protocol, which makes logical sense. However, I also think it sounds a bit risky. I'd want to be working with a doctor who has some experience with it. Apparently, you want to be sure your adrenals are in really good shape before attempting it.
I see your point about the reference range differences. Still confused as to why there is not a universal standard? The different measurements (IU/mL, pg/m, etc.) are also a source of confusion. Is this a manifestation of the controversy in medical circles concerning diagnosis and treatment of thyroid disorders? Maybe it's not as bad as I'm thinking. Wish I could just leave the interpretation up to my doctor but quite frankly, I've lost some faith there.
It appears that many hypothyroid patients are achieving good results by addressing RT3 issues (of course this is contingent upon lab results). I joined an RT3 help group (RT3_T3***@****) that advises people on how to deal with elevated RT3. The therapy consists of Cytomel only in a gradually increasing dose up to 75mcg with the intention of supressing thyroid production of T4. It appears that by depriving the T4 shuts down the conversion to RT3 (no T4 = no RT3). I find it interesting to note that my own experience with levothyroxine resulted in a great increase in the muscle and joint pain. My understanding is that adding T4 is essentially throwing "fuel on the fire". The switch from levothyroxine to liothyronine resulted in a definite decrease in the pain. This doesn't necessarily prove anything but is an observation that I cannot ignore. It is also important to note that the moderator's on this group have overcome this condition sucessfully and are able to guide members through this process. This protocol is outlined at thyroid_rt3.com.
After all the disapointment I have had I really feel that this may be an answer for me. Nearly two years of my life have gone down the drain because of this (unresolved) issue.
It appears that many hypothyroid patients are achieving good results by addressing RT3 issues (of course this is contingent upon lab results). I joined an RT3 help group (RT3_T3***@****) that advises people on how to deal with elevated RT3. The therapy consists of Cytomel only in a gradually increasing dose up to 75mcg with the intention of supressing thyroid production of T4. It appears that by depriving the T4 shuts down the conversion to RT3 (no T4 = no RT3). I find it interesting to note that my own experience with levothyroxine resulted in a great increase in the muscle and joint pain. My understanding is that adding T4 is essentially throwing "fuel on the fire". The switch from levothyroxine to liothyronine resulted in a definite decrease in the pain. This doesn't necessarily prove anything but is an observation that I cannot ignore. It is also important to note that the moderator's on this group have overcome this condition sucessfully and are able to guide members through this process. This protocol is outlined at thyroid_rt3.com.
After all the disapointment I have had I really feel that this may be an answer for me. Nearly two years of my life have gone down the drain because of this (unresolved) issue.
I did check my last hemotology lab and ferritin came in at 48.2. Need to get that much closer to 100. I hope the iron supplement I'm taking will do the job. The pharmacist that recommended it (Enzymatic Therapy Ultimate Iron) told me to take one gelcap rather than the suggested two. I hope to get hemotology labs done soon so that should give me an idea if I need to up the dose.
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