I have been having conflicting thyroid results and am hoping for some insight. I’ve been sluggish, short of breath with exertion, frequent wake ups at night, constipation, dry skin, and without a period for five months. My TSH has been on the low end of normal (.3) while I also have low free t3 and low free t4. Endo keeps lowering my Synthroid because of my low tsh, but this just makes my t3 even lower.
Endo says that she’s concerned about giving me t3 medicine in addition to my synthroid because of my low tsh and doesn’t want to cause a thyroid storm. Also of note, my estradiol is only 5, and I’m only 33 years old. My diet is very rigid due to many allergies, and my BMI is close to the low end of normal, so I do wonder if this could contribute to low estrogen. I haven’t had my period in 5 months.
I just had an MRI of my pituitary, and it didn’t show any masses, but I wonder if I could have inflammation in my pituitary that wouldn’t show up causing hormone imbalances? I have mast cell activation syndrome in addition to Hashimotos, and autoimmune disorders run in the family. Lastly, vitamin tests were all within normal except Vit d was at low end of normal at 30 (normal tests were b12, selenium, and folate).
Thank you for any input!!
Sarah
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SarahLou30
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TSH doesn’t cause thyroid storm. It’s your free T3 level that matters. Doesn’t sound like they know what they’re on about! What are your free T3 levels?
This excerpt taken from thyroid patients Canada blog written by the amazingly clever Tania Smith called TSH untrustworthy in Thyroid Therapy.
‘A person with a completely suppressed TSH may have euthyroid levels of T4 and T3 and absolutely no sign of hyperthyroid metabolism or other telltale signs of overstimulation of tissues by T3 hormone. We see euthyroid levels frequently in patients after high-risk thyroid cancer, when TSH is intentionally suppressed because TSH is known to cause cancer to return. These patients cannot be rendered hypothyroid by their TSH alone. They are genuinely hypo or hyper only in relation to their thyroid hormone levels, not their pituitary hormone level.’
In summary Endo shouldn’t be lowering meds and refusing T3 meds based on TSH result. They should be looking at (most importantly) your free T3, also your free T4 and signs and symptoms. You sound like you are hypothyroid on not enough thyroid medication and hence your debilitating symptoms. Endo is basing this action on worries about poorly designed and misunderstood studies showing links between suppressed TSH and atrial fibrillation and osteoporosis. LOW T3 and T4 are linked to poor outcomes. HIGH T3 is linked to AF and Osteoporosis risk. TSH a pituitary signaling hormone doesn’t CAUSE any of the above. Suppressed TSH is only linked to poor outcomes when it is a result of suppression by thyroid hormones that are high and above range.
Also autoimmune antibodies can affect the TSH independent of the thyroid hormones circulation in blood. My TSH has been suppressed for 13 years independent of what my thyroid hormone levels are. I have both blocking and stimulating autoimmune antibodies which have influenced my suppressed TSH. I don’t fully understand why as it's complicated but it’s caused me all sorts of arguments and problems over the years with my GPs and Endos similar to what you’re going through. MRI scan showed normal pituitary.
Hi hoxo, quick question... I've been trying to understand the testing for the blocking sort of T(sh)Rab.. do you know what the test was called to show you had these....? like you say it all gets a bit complicated....
Hi no I don’t. I just recall and Endo saying well you have both blocking and stimulating antibodies. Tania Smith in a thyroid Patients Canada blog has done an article about this and it is on my to do list to read and understand about all the different thyroid autoantibodies - as well as the complex info she’s written on the diodinases! If I figure it out I’ll get back to you. It made sense at the time and explained why my TSH is suppressed despite levels of thyroid hormones.
Thank you so much for your very helpful feedback. I’m looking into finding a different endo who is more knowledgeable in complex thyroid issues. Are you on both t3 and t4 medication? Has it helped? Thank you again!Sarah
I stopped relying on Endos and GPs many years ago when I realised they didn’t really know what they were doing and it was making me poorly. That was my personal choice. I now take NDT and do my own private blood tests. What a sorry state of affairs when this is what some patients have to resort to.
Endo says that she’s concerned about giving me t3 medicine in addition to my synthroid because of my low tsh and doesn’t want to cause a thyroid storm.
Seems like a misguided comment by the Endo as since you say you have low fT3 level then she would be in control of how much your fT3 went up by , and ought to be adjusting the dose of any T3 containing hormone accordingly , so basically . no you wouldn't get a thyroid storm, unless she overdosed you on T3 ... And even then, as far as i understand 'thyroid storm' it is not the same as 'overmedication' anyway, it's a rather different and significantly more dangerous thing associated with continuous overproduction of excess thyroid hormone due to Graves TRab antibodies. I'm not sure that too much t3 = 'thyroid storm'
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Low TSH with normal T3, T4. 
Medical Paper please – low TSH on T3 only
'normal' TSH and T4, low T3
Low T3 Low T4 and very Low TSH
Suppressed TSH from Pituitary
