After a bit of a battle to get my GP to agree my TSH should be less than 5 mU/L a few months ago (and to be honest I put off having my repeat blood test to check levels as I couldn't be bothered with the fight I assumed was probably coming!), I've just had blood test results. Am currently taking 125mg levothyroxine a day
Serum TSH 0.68 mU/L (0.35-5.5)
Serum Free T4 18.9 pmol/L (10.5-21)
Last blood test I had in June before increasing from 125mg to 100mg:
Serum TSH 5.09 mU/L (0.35-5.5)
Serum Free T4 16 pmol/L (10.5-21)
So TSH has come down a lot since my last dose increase! Did the test in same way and at same time of day (8:45am) as the previous test. All of my tests since I first started levothyroxine last November have been lingering around 5-7 despite all the dose increases over that time (was 15 initially when I was diagnosed).
But my question is - is this now too low? I have been overall feeling a lot better since this latest dose increase, but the only thing I have been struggling somewhat with is my heart rate being a lot higher since upping the dose (resting heart rate has been consistently about 85 since the last 2 dose increases vs 60 ish previously), and palpitations, particularly when I'm going to bed at night. My fitbit logs everything I do as exercise now, as the slightest bit of activity seems to spike my heart rate into "moderate exercise" haha. The endocrinologist I saw to help convince my GP to up my dose did tell me high heart rate can be a marker of whether the dose is too high, and I should be aiming for TSH about 2.
My GP has just texted to say thyroid bloods look good hope you are feeling better, test bloods in a year. Is it worth me trying to push to at least be seen by the GP? All my interactions with them since diagnosis have been by text, and I'm just feeling like although I do feel better, this heart rate thing is annoying me and maybe not good to wait a year to see if all still ok? Any thoughts would be much appreciated
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Fweb
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if i was in your position i would try a very slightly lower dose of eg 112.5mcg for a few months without involving the GP or getting prescription changed ( if they lower it now it may be hard to get them to put it back up,,, especially if you've mentioned heart issues)
to get 112.5mcg .. cut a 25mcg in half to get 12.5mcg, (it doesn't matter if it's not an exact half , just take the remaining half the next day , levels will even out in the body as levo has along half life) .... or take 125mcg / 100mcg on alternate days ,
(it's possible to make even smaller adjustments eg 5 days 125mcg / 2 days 112.5mcg .. etc )
give lower dose at least 6-8 weeks to see how it feels , i find the first 4/5 weeks often feel 'not good' when i change dose, so i don't asses how it feels without giving it plenty of time to settle in .
if it's worse you can go back up.
and if it's better ...well frankly i still wouldn't tell my GP ... it's quite useful to have a prescription of slightly more than you take that includes some 25mcg tablets .. it allows you to experiment with slightly increased dose if you feel the need.
Donyou always get same brand of levothyroxine at each prescription
What vitamin supplements are you taking
No Ft3 result or any vitamin results
Suggest you get FULL thyroid and vitamin testing yourself privately BEFORE considering changing anything
Otherwise you will need to wait another 8-12 weeks before testing
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Free T4 (fT4) 18.9 pmol/L (10.5 - 21)
Ft4 only 80.0% through range
So not too high …..but might be too high for you….
Need to know Ft3 and vitamin results
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thank you for this! Re brand - I think been a different brand/combo of brands literally every single time I've got my prescription. I had mentioned to the pharmacy if it was possible to be consistent in the brand but they just told me it's based on whatever they can get in/what doses are available of different brands. Currently I have Accord 100mg and Teva 25mg, prev had Hillcross and Northstar (which I think I've read here previously are also Teva?) too
Agree with you I think I just need to do monitor my health myself again to see whats going on - I think it was you who had suggested to me before palpitations could also be due to low iron, I've been taking Spatone for a few months now in the hopes that will do more than the iron tablets I had been taking. So I should just do the full panel again myself, before trying lowering my dose or anything
Fweb, I was a poor converter of levo and always had low T3 and would have episodes of AFib, fortunately once I started taking T3 in addition to T4 the AFib went away. I always do private blood tests such as Medichecks to get the full picture. NHS tend to only do one test per year via GP and T3 is rarely tested although it might be checked if you are taking T3.My TSH has always been low at 0.005, even before I started T3 and fortunately my GP accepts that is the case.
Your post suggests more than one increase in dose? From what to what to what? I found that I couldn't increase my dose to what I needed in one go, it had to be built up slowly. 100 wasn't enough, 125 was too much and I slowly increased by continuing with 100 per day with an extra 25 once a week (Monday) and my symptoms improved but didn't go away. When they stopped improving I upped my dose to 100 a day with an extra 25 twice a week (Monday and Friday) and so on. I'm currently on 100 a day with an extra 25 four times a week (Tue, Thu, Sat and Sun). I'm not perfect, but five times a week was too much and the symptoms got worse (like I was overdosing). It's taken me two (three?) years to get to this from just 100 a day. I needed to go through the same process when I moved from 50 to 75 and again when I moved from 75 to 100, though it didn't take as long to move up doses either time. My TSH varies between 0.5 and 0.6 nowadays.
I also had an issue last year when the chemist gave me a different brand of 25s. All my symptoms came back and I felt like I was having palpitations every time I started to drop off and then jerked awake, though my watch picked up nothing and when I felt my pulse on my wrist or my neck there was nothing unusual so maybe it wasn't my heart, maybe it was just some other muscle going into some sort of spasm? My insomnia was awful, too, I was getting one or two hours sleep a day, I felt like a zombie. The GP checked me out with an ECG, but as nothing happened in those few minutes anyway I'm not sure what it could have picked up? It took me 9 months to fully get over that change of brand (some symptoms went away as soon as I was back on my normal brand, some took 9 months, but most took about 6)
My resting heartrate is about 47-48 nowadays, but I'm a runner so that may have something to do with it? I'm also male, which could make a difference, too?
Thanks for reply and sorry missed this until now! I started on 50mg day back in Nov 23, was upped to 75mg in Jan this year, 100mg in April, then 125mg in July. What you are describing is sounding very similar to how I've been feeling, I overall do think I'm feeling better during the day on this higher dose but at night I'm not sleeping well and am just aware of my pounding heart while I'm trying to chill haha. I've been experimenting alternating 100/125mg each day, at the moment still seems the same but i will try the way you describe - back down to 100 and add back in days of extra 25. Thank you!
Good luck, I hope it works for you like it has for me. It isn't perfect, but it's the best method I've found, though at my age (57) I'm wearing out anyway
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Results from 2011 When I was diagnosed Hypothyroid
Results - is my TSH 'too' low?
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GP has tested TSH/T4/T3 all too low
