Has anyone got any ideas as to why I'm still not feeling well? My endocrinologist has decreased my dosage of Levo as she says I am over medicated and I am risking atrial fibrillation. I have Hashimotos for which I am on Levothyroxine and a bit of Liothyronine. Up until December I was on 100mcg T4 and 10mcg T3 (twice a day) but I have been reduced to 75mcg T4 but I am told I am still overmedicated. I have never really felt tip top but I did feel better than I do now I've reduced the dose, lots of the symptoms I had have reared their ugly head again. I don't in any way feel over medicated, my resting heart rate is around 50-54bpm, feel cold, dry skin etc. so I'm not sure what is going on.
Blood results on 100mcg Levo and 20mcg Lio (Dec 18):
Unfortunately, you have an endo who prescribes T3 but doesn't understand the test results that come with it.
When on T3, TSH tends to be low, even suppressed, that's just what T3 does. So your December results showed a suppressed TSH but your FT4 was only 28.7% through range, and your FT3 was 60% through range. Not a bad set of results, and if you felt well with those there was no reason to alter your dose.
Your new tests done in February on the lower dose of Levo now show a below range TSH (but not suppressed, so lowering Levo has raised TSH), FT4 is now only 23% through range (FT4 lowered due to Levo being lowered) and FT3 is now only 37% through range so lowering Levo has also lowered your FT3. No wonder you don't feel well. Lowering your dose has lowered your hormone levels which is making you symptomatic of hypothyroidism. It's low T3 that tends to give us symptoms.
Your endo is altering dose purely by TSH. S/he obviously wants it in range regardless of your hormone levels and doesn't care about your symptoms. Rather typical I'm afraid. They really don't have much of a clue. I had one like that when I was on Levo only, I binned him.
Thank you both for the info. I wouldn't say I felt fantastic before the dose decrease but better than I feel now. The trouble is I've been discharged from the endo as she felt that I was being treated optimally, I mentioned how I felt to my GP and she scoffed that whatever is causing my symptoms has nothing to do with my thyroid as my TSH is too low now but would keep me on this dose to keep me happy!
On any dose of T3 it's almost inevitable TSH becomes suppressed
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test
Is this how you do your tests?
How do you take your T3? As 2 x 5mcg dose?
Your first set of results from December suggest you are under medicated
Many of us still need a decent FT4 level.
FT4 of just 12 may be too low
February results show sand low FT4 and now low FT3 as well
How much Levothyroxine were you on before T3 was added?
As you have Hashimoto's are you on strictly gluten free diet?
Do you regularly retest vitamin D, folate, ferritin and B12
Can you add your most recent vitamin results and ranges
I take the tests as you describe thanks to this forum yes. I take my T3 as 2x10mcg dose, they wanted to take my T3 dose down but I asked them not to as the T3 actually helped a little.
I haven't had a Vitamin test for a while no, well I've had vitD but as I've been discharged I'm not able to find out the result.
I can't remember what Levo dose I was on before the T3, can't remember much these days to be honest!
Your endo is a pr*t. Good job they’ve signed you off before they do any more damage. Your GP is also a pr*t. How dare she ‘scoff’ at your illness. What kind of attitude is that? And if your symptoms are down to something else - then what is it exactly? As your GP shouldn’t she try to find out? Unfortunately you are caught between two pr*ts who don’t understand the thyroid and thyroid medication.
I’ve posted the below before a few times so apologies if you’ve read it already, but just in case it helps - I’m on T4 only and I know T3 would suppress your TSH anyway, but you might find the comments about hashimotos and over-medication useful in your battle to be well.
I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.
Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo (I’m not on T3), despite the fact that my TSH will go lower and it is already below the reference range.
What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low.
My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well. This is the reason the T4 and T3 test are so important.
The combination of hashimotos and synthetic T4 creates a perfect storm. Your pituitary goes AWOL and you may struggle to do anything with synthetic T4. Therefore other than T3 (which is the most important measurement) patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.
There are physical tests your GP or endo can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. You can take your temperature and heart rate on waking every morning and record these to show your GP as proof of under-medication too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56! Hardly over-medicated!
Your GP and endo should be investigating why you are not symptom free and feeling better despite the stupid TSH reading. Not responding to a piece of paper rather than a patient and decreasing life-giving medication and condemning you to a half life.
Do battle - and good luck. Tell your GP to dose the patient not the blood test. If you were over-medicated, believe me, you would know. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case! Apologies for the length of the post 🤸🏿♀️🥛 #fightforyourthyroid
Thanks all, is there anywhere that gives an indication of interpreting blood results when you are taking T4 and T3 or is there too many variables for there to be such a thing?
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