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664546 tn?1225367634

Very low TSH, Normal T4

I was diagnosed with hypothyroidism at 10 yrs old, (I'm 32 now) and have been stable with normal results on a dosage of 200mcg of Synthroid for around 10 or more years...

Over the past year or so, I went through a lot of personal stress.. Along with that, just about every system in my body seemed to react badly... I was in the hospital with horrible GI problems, I had no period for almost a year and now it is no more than 1 day long, out of control rashes esp. on arms, chest, face and head, outrageous anxiety, depression,panic attacks, vertigo, shaking/cold sweats/muscle weakness, EXTREME sensitivity to heat and massive sweating, esp. from my face, endless crying spells etc etc....  

I have been in therapy for the anxiety, but also have narcolepsy, (I know most doctors do not necessarily believe this, but I have been through 5 sleep studies, and had my tonsils out to rule out OSA, and have had 2 neurologists confirm it is definitely narcolepsy)  so it has been a VERY rocky road trying to work out the combination of taking CNS stimulants along with Effexor, clonazepam and alprazolam.

My neurologist (who is very caring, and dedicated to treating symptoms rather than lab work.. a rare thing in doctor's, in my opinion) recently did a bunch of blood tests, and my TSH is suddenly very low... 0.04.   I know that normally would indicate hyperthryoidism, but my free T4 and free T3 were in the normal range.  My regular doctor did the tests again when I showed him the results (much to my annoyance) and when he got the (same!) results, he just lowered my Synthroid to 150mcg.  I don't understand how this would make a difference.

I'm not the doctor, but is it not true that my blood work indicates a prblem with something other than my actual thyroid?  Lowering my Synthroid would just lower the T3/T4, which was normal?

I'm sooooo frustrated with doctors right now, and I have a feeling this change in medication was just an inexperienced, "band-aid" attempt at getting me out of the office quickly.

I guess I wouldn't be so worried if 0.04 wasn't so extremely low for my TSH.... would that not indicate a problem with my pituitary gland, rather than my thyroid??
9 Responses
664546 tn?1225367634
P.S. My doctor also tested my ANA (antibodies, right?) and for RA, and both were apparently negative.  All hepatic results were normal.  
231441 tn?1333896366

well, I don't know for sure if it could be pituitary, but I have the same thing. My TSH is very low but my FT3 and FT4 are in mid-range.  My Dr keeps muttering about TSH being too low, but doesn't change anything when I remind him that my FTs are normal. (I'm pregnant now so he doesn't look at TSH anyway).

I have a pituitary microadenoma. I have never had detectable thyroid antibodies (so who knows why I went hypo), but my endo still insists that there is no pituitary cause/involvement. And has not done and will not do any testing...

Have you tried armor/dessicated thryoid?  A lot of doctors are against it, but I personally find it works very well for me (And I feel way better on it.  I would say that on T4 only the lights camee back on again and then with dessicated there was color in the world again!).  May not be your answer, but worth looking into.  Particularly given your are having anxiety problems as well.

Hope someone else can answer you on the pituitary side.

Also, have you been tested for celiac?  This can have GI and psychological among other symptoms...
664546 tn?1225367634
When I had the GI problems, I went to urgent care, and after several tests, I had a fever over 100, elevated white blood count, and a seriously swollen colon.  They could not even find my appendix on the CT, b/c of the swelling of the cecum (sp?) and said they would be doing emergency surgery!  I was admitted to the hospital and put on IV fluids, and they changed their mind about the surgery since they didn't know what was wrong.  

They put me on EVERY medication known to mankind, to "fix" whatever it might be, and was told they were 95% sure it was Chrons Disease. I was then released from the hospital, on all this medication....  After being on Cipro, Flagyll, Hydrocodone, Asacol and Entocort, along with a no-residual/low-fiber/lots of Milk of Magnesium diet for MONTHS.... (which consists of being able to eat just about nothing), they FINALLY got around to doing a colonoscopy and EGD (I think that's right? GED? Whatever....), and (3 more weeks later) was told I was negative for chrons, UC, and celiac disease, and sent on my merry way.   (As my pcp so kindly pointed out, Oh NO.. you don't have celiac disease... that makes people very skinny!  THANKS!)    

My neurologist did an MRI of my brain, along with an EEG, to test for MS, chiari malformation and God knows what else....the good news... I HAVE a brain, and it APPEARS  to be PHYSICALLY normal according to the radiologist.  So... I was sent home with a "diagnosis" (?) of STRESS.   Which was very helpful....  I had NO CLUE what to do about it...  yoga?  buddhism?  start smoking pot?  

At this point, I lost my job due to all the time missed from work, and ended up in the Psych ED, and was put on klonapin.  I then moved to Raleigh for personal, family reasons.... (just a little added stress)  I had to go through the county crisis assessment  to be able to afford to see a therapist and psychiatrist (since I had no job) and to be able to afford the prescriptions.

Now, I have these whacky TSH/T4 numbers and want to just SCREAM, because I feel like everywhere I go, someone gives me some half-hearted "life" advice and diagnosis of "eliminate stress from your life, and try this new prescription."  Since I've been in Raleigh, I have been prescribed 24 different rx's for various things... I'm a nervous wreck, I can barely function on a daily basis, I'm going to run out of time for unemployment benefits within weeks, and I just want someone to tell me what, if anything, is wrong!!!!

My biggest question for anyone out there is:  Is there ANY chance that a TSH of .04 and normal T4/T3 numbers is normal?   Can I count on some of my symptoms being related to this, or is it likely and/or possible that it is ALL unrelated!?  I just want a place to start, to work on fixing my life!?  All the therapy in the world won't help if there is something actually wrong with my brain and/or thyroid causing this?

Thanks so much in advance for any/all advice, and thanks for your response, Sally!  I have heard of the dessicated thyroid (gross, but sounds helpful though!?)  It's not necessarily good to know that someone else is being somewhat blown off like I am, but at least someone out there understands!  I'm glad you are feeling better though, and I'm looking forward to adding the color back to my life!   :-)
Avatar universal
Same problem here.  Are you still there? TSH has been documented to be low in narcoleptics who are not hypo-T even with 'normal' T4 and T3.  This mystery is not recognized by endos.  But your endo could test other hormones like FH, LH, SHBG and bone remodeling markers to verify a patient is not hyperthyroid.  Always insist on a measuring T4 and T3, not just TSH. They should consider TSH unreliable with narcolepsy.
Avatar universal
FYI - Here is a research citation for low TSH in narcos but normal t3 t4

Maybe an osteopathic doc would be more cooperative?  Just seems to me docs should look at t3 t4 and keep them in upper part of normal range and ignore TSH since they cannot explain the tsh quirks and tsh is an indirect measurement.
Avatar universal
If you are referring to thyroid antibodies, they are typically normal once you are on thyroid hormone.  They have to be tested before going on hormone replacement to see if they are high.  Some expert docs can tell if you have Hashimoto's by feeling your thyroid gland to see if it has a 'grainy' texture.
649848 tn?1534637300
This is a very old thread and emmin8r has not been active on the forum in almost 4 yrs, so it's unlikely she will respond to your comments.

I disagree that thyroid antibodies are typically normal once you are on thyroid hormone.  Many of us have antibodies that do not change much over the course of treatment, until there is no longer healthy thyroid tissue left; then the antibodies go into remission.

Additionally,  antibodies don't "have" to be tested prior to going on replacement medication.  I was on replacement medication for nearly a year, before my antibodies were tested and they were still 350+.... I've been on replacement medication for over 4 years and still have positive antibodies.  We see this quite regularly with our members.
Avatar universal
Thank you for that update and explanation.
Avatar universal
Majority of persons with Acute Stress has low TSH and with Narcolepsy. Anti stress management with strenuous exercise will bring the TSH level normal
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