Symptoms not correlating with blood test

Hi, is anyone happier/healthier on a dose of levothyroxine that takes them off the top end of the blood test parameters? T3 combination is unfortunately off the table for me. I don't have the energy to fight that fight. I had been feeling absolutely awful, couldn't walk up the road/stairs without feeling woozy/weak/faint. Blood tests showed a slight drop so increased my meds by 25mg every other day and things improved. I am still suffering with extreme exhaustion/brain fog/depression. But increasing my mess will completely surpressive my tsh and take my t4 over top end.

Any thoughts/experiences appreciated

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  • I always feel at my best with T3 slightly above range. I have tried several times to lower my levels to keep my GP happier (I self medicate with NDT and always have a suppressed TSH) but although I can function after a fashion I have just accepted that is what I need.

    My argument with myself, and my doctors, is that ranges are just a statistical construct, they are not the word of God! My body tells me what it finds is optimal. Even NDT is not the same as I would be producing if their medicines had not destroyed my thyroid gland, and I just do the best I can in the circumstances.

  • Am so sorry to hear of your struggle. It sounds like you are not converting very well and in order to achieve some conversion your body is needing a higher dose of levothyroxine. Sadly it does sound like you need combination medication -would your doc not even consider adding a bit if T3 into the mix?

  • Elzbth, blood tests rarely correspond to symptoms, and it's because doctors tend to stick ridgidly to ranges - especially the TSH - that patients continue to feel so unwell.

    Firstly, the TSH is meaningless once you are on thyroid hormone replacement. It doesn't matter if it's suppressed, you won't have any ill effects due to a suppressed TSH.

    However, if the FT4 goes over-range and you still feel unwell, then you probably aren't converting. Unless you see an FT3 result, you're only getting half the story. It's the FT3 that is most important because that's the active hormone. And if that's low, then you are going to get symptoms.

    OK, so let's assume that your FT3 is low, and you aren't converting. The question then is : why aren't you converting? And the reason could be that you have nutritional deficiencies - which has nothing to do with how well or how badly you eat. So, best to check your vit D, vit B12, folate, iron, ferritin and selenium - get them tested. Then, post the results on here - along with your TSH and FT4 - and the ranges! And then people will be better able to help you. :)

  • Thank you all. I've recently had my b12, D etc checked but not selenium... I should add that I'm breastfeeding my 1 year old and have had a total thyroidectomy due to cancer and thyroiditis more than 10 years ago. I do feel my hormones have gone haywire since having a baby!!

  • The professor who diagnosed my husband had several patients who were on 500 or 600 or even 800 mg of levo to feel well

    They had constant battles with their GPs so had to keep going back to the prof

    It seems some people are simply so much by thyroid hormone resistance that it takes high doses to get it into the cells

  • Some people do need suppressive doses and this is an excerpt to an archived site as the doctor died prematurely:-

    Nearly all thyroid cancer patients use TSH-suppressive dosages of thyroid hormone. Through meta-analyses of many studies, researchers looked at the heart condition of these patients—some of whom have suppressed their TSH levels with thyroid hormone for decades. The researchers found that the suppression has not compromised the health of the patients’ hearts.

    Talking out of both sides of its collective mouth, the endocrinology specialty continues to treat thyroid cancer patients with TSH-suppressive dosages of thyroid hormone, while authoritatively warning hypothyroid patients and other doctors that TSH-suppressive doses are likely to cause arrhythmias and heart attacks. The specialty's self-contradicting inconsistency is so glaring that it unveils conflicts of interest that honorable people would be ashamed to be caught in.

    From my study and clinical experience of this issue over the years, I've derived a distinct impression that I justify in my forthcoming book Tyranny of the TSH: The endocrinology specialty is unyielding in its endorsement of T4-replacement, and this appears to me to be a commitment to stabilize the financial market for the associated products of T4 replacement. Those products in the U.S. include Synthroid, and importantly, they also include the TSH, free T4, and free T3 tests provided by labs.

    It's my belief that the specialty uses the theoretical possibility of cardiac arrhythmias as a scare tactic to intimidate other doctors into ordering more-and-more of these lab tests, especially TSH tests. The intimidation ensures the continuing huge sales of these tests. The sales please the corporations that market the tests, and as a quid pro quo, the corporations generously share their profits with the specialty. (As others have noted, the sharing comes as huge financial grants, speaking fees, sponsoring of speaking appearances, research funds, free drug samples and patient literature, and logo gift items.)

    web.archive.org/web/2010103...

    Before levo and the blood tests people were diagnosed upon their clinical symptoms and prescribed Natural Dessicated Thyroid Hormones until these were relieved and patient felt well again.

  • It seems completely reasonable to me that if the thyroid gland retains some function, especially if this is variable, then safe dosing can be a problem.

  • Not if you gradually increase - if we take a bit too much we will have unpleasant symptoms and can drop down to the previous dose.

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