Apologies in advance for length of this but I’m baffled & hoping someone may be able to help 😊
I’ve been on 175mcg Levo & 20mcg Lio for about 14years, tests always in range, feeling good.
TSH has always been <0.01 since I started taking T3.
Due to a ban on ‘non essential’ blood tests due to Covid at our practice I hadn’t had levels checked for 18months.
For last few months I started to suspect I might be on the ‘high end’ - bit trembly, pulse slightly higher, slight weight loss, occasional palpitations. Nothing extreme but was expecting results to be on high side.
They were:
(No Levo or T3 taken before this test)
21June2021
TSH <0.01 (0.35-3.5)
T4 20.02 (7.5-21.1)
T3 5.4 (3.8-6)
A little bit higher than normal but not significantly.
Last weekend I started getting severe palpitations lasting all day, felt very wired & tired.
I’ve been under huge stress with family health worries so thought that might be causing it.
Decided to reduce my T4 to 125mcg to see if that helped.
It didn’t really but figured it’s early days.
This morning I headed to A&E with my heart pounding, skipping beats, tight chest, pain in centre of chest. Very scary.
Had full heart check, blood tests etc including Thyroid.
The results have shocked me!
(125mcg Levo, 20mcg T3 taken)
3.7.21
TSH <0.01 (0.35-3.5)
T4 21.7 (7.5-21.1)
T3 11.8 😱 (3.8-6) up from 5.4
I wouldn’t expect a big drop after 7 days of reducing T4 by 25mcg, but how can my T3 have shot up to 11.8 so quickly?
Almost double what it was a couple of weeks ago.
I never take my meds before a planned thyroid blood test, but had already taken them this morning before my heart went crazy & I went to A&E.
Does anyone know if taking my T3 beforehand could really double the level it was two weeks ago???
How can T3 go up so much so quickly?
Consultant at the hospital said to reduce dose to 125mcg Levo & 10mcg T3 & recheck in a week.
A big drop from my original dose of 175mcg Levo & 20mcg T3.
Obviously I need to get T3 down asap but I’ve been stable on the original dose for 14 years & I’m dreading what this reduction will do to me, I’ll crash & burn I suspect ☹️
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Janeh1960
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The gap was only about 3 hours, usually have test early am & take that days dose after it so about 24 hrs since last dose. Yes I have Hashi’s (& Antiphospholipid & Sjogrens)
No I don’t take Biotin.
Could the increase in T4 be explained by taking 150mcg 3 hours earlier this time as opposed to my usual 24hrs earlier?
I have been ridiculously stressed just lately don’t know if that could affect it.
Both the increases could be explained by taking your hormone so close to the blood draw. You were in the middle of your peak! So, if I were you, I would ignore the doctors advice to lower your dose, or you'll make yourself very ill. I don't suppose he knows much about thyroid, anyway.
How many hours do you normally leave after last dose T3 before blood tests ? ... and how many hour since last dose to blood test ,this time at hospital ? This in itself could make a substantial difference to the fT3 result.
(possibly there is a typo in your post, it says you previously reduced Levo from 175 to 125 , but also say's you made a reduction of only 25mcg ?)
Normally leave 24hrs, this time was only 3.Yes you’re right I took it down to 150mcg & kept T3 the same, now I’ve got to reduce it to 125mcg & 10mcg, such a big drop.
I would prefer to reduce them both gradually but they’re going to retest next week to see if T3 has gone down and I’m worried they’ll stop it completely if I don’t halve it so the level has dropped a lot by next week.
I’ve been so well for so long and now I don’t know what will happen.
i forget exactly, but about 3-5 hrs (ish) is when you would expect there to be a big peak in blood levels after ingesting Levo or T3. So basically, if you did next weeks blood test following your usual routine then there will 'appear' to be a big drop in T3 and a (smaller) drop inT4 anyway , even if you didn't reduce dose at all.
24 hrs is too long a gap to get a fair reading of your 'average' T3 levels... so your usual method of testing will always have been giving you a 'false' low for T3 results ,. so it's quite likely if you had been testing at 8-12 hrs after last dose of T3 , you would have been seeing fT3 levels quite a bit higher than 5.4 .. I don't know 'how much higher' probably not as much as 11 though ...so i don' think the 'time of last dose' is the full explanation for the raise, but it will definitely be part of it.
My other thought is that just 7 days at 150 (down from 175) is not long enough to tell anything , either in terms of whether it improved symptoms of overmedication or in blood test results.
So i share your concerns about a further reduction of 25mcg Levo and halving T3 dose,, seem like asking for trouble to me.
Correction: you do not HAVE To. Just because a doctor tells you to do something, there is no law saying you have to do.
However, you probably were a bit over-medicated, anyway, if you always left a 24 hour gap between your last dose of T3 and the blood draw. It should only be 8 to 12 hours. So, I think, if it were me, I'd put the levo back to where it was, and reduce the T3 by 5 mcg - certainly not by 10 mcg! As I said, that E&A doctor probably knows nothing about thyroid. And, see if that helps the palpitations, etc.
normally i'd say 24 hrs for Levo and 8-12 hrs for T3. (adjust timing's the day before to get this spacing)
However in this particular case, i'd be tempted to do what you have been doing , ie 24 hrs for both Levo and T3.. for 2 reasons:
1) you want them to get off your back and not mess with your T3 (prescription?) but still have the freedom to adjust dose yourself a bit more carefully than they will. So it's quite important they see a convincing reduction in fT3 levels next week.
If you only leave 8-12 hrs it will appear to be less of a reduction than if you leave 24hrs.
If it was me i'd reduce T3 dose by 5mcg, due to symptoms you are having, and then let them see a test done 24hrs after last dose T3 .. which should hopefully give a much much lower level than the 11 that has scared the heck out of them .. then hopefully they wont reduce (your prescription ?) by more than 5mcg and will leave you alone)
Make sure you tell the phlebotomist that you decided to only reduce T3 by 5 mcg instead of 10 mcg .. you don't want them thinking you did reduce by 10mcg or they will reduce prescription by that much (if you have one)
not sure what i'd do about Levo dose .. GGoose said 'put it back to where it was' .. i'd probably leave it at 150mcg for now i think.. but not sure to be honest, but to me it seems counter productive to increase at the moment when you only reduced it a week ago.
2) you know what your usual 'feeling well' results look like when testing 24hrs after Levo AND T3.. if you now test 24 /levo 8-12 /T3 you won't know how they compare to your 'usual'
..... .I don't think "when you are in the middle of 'something unexpected' going on with thyroid" is the right time to change how you normally test .. even if how you normally test is 'wrong'.
It's more helpful to have results that you know you can compare with each other, so you can see what's actually changed.
Hope some of that makes sense .. seem to be having difficulty writing what i mean
Won't it be more of a puzzle if you go through with all the reductions and then try to figure out what made a difference if there IS one? Perhaps you should only change the timing of your doses by backing up twelve hours and see what happens. If still high, start the reductions. When my tests were over the high range by two points for FT3 (not double) I was feeling fine but I had taken the dose the night before the morning test. I may make a slight reduction.
I take T3 only. I take 20 mcg in the morning, 20 mcg at 4pm and 10 mcg at bedtime. I take the morning dose the previous morning before a blood test and not the 4pm or bedtime doses and get tested by 9.30 at the latest.
Over the past 5 years my results for FT3 have ranged from 3.6 to 4.8 (3.5-6.5 pmol/L) (a total of 8 tests). A couple of years ago, the endo asked me to take a test without pausing the T3 so he could gauge how much was being absorbed (from stomach to bloodstream).
Testing within a couple of hours of taking a 20 mcg T3 tablet gave a result of 10.7. The endo was perfectly happy with this.
Back in 2016, I forgot about my test and took a tablet the morning of the test, the result was 8.5.
So, if a T3 test is taken close to taking a tablet the result will be high, (abnormal), but is what is needed and expected otherwise the T3 would not be being absorbed.
My wife normally refrains from taking T3 the day of the test for about 18 hours before the blood draw. Recently, she took 20mcg at about 5am when her test was at about 11:30am. Her T3 registered as 9.1 (range 3.5 to 7). So your T3 result after taking 20mcg T3 3 hours before your test is not surprising at all.
Interestingly when my wife's heart gets "grumpy" (she had an ablation for AF a few years ago), she actually finds that taking more T3 calms it down (which seems contradictory and suggests she may even be under-medicating - currently she's T3 only, 65mcg a day). I'm not suggesting you do the same but it does seem strange, in my wife's case, that taking more T3 helps.
Quick update 😊 Palpitations/irregular hear beat got even worse Sunday, I felt dreadful, exhausted, lightheaded etc & it scared me so much after visit to A&E Saturday that I took no T4 or T3 on the Sunday.
My Endo rang me Monday, she shared my concern about such a big drop but understood why the hospital were concerned about my very irregular & fast heart beat, BP etc.
She said to take 10mcg T3, split am & pm & 125mcg T4 at bedtime for this week/until palpitations settled then increase T3 according to how I’m feeling.
She agreed with me that the high T4 is probably the problem as something similar happened years & years ago long before I was taking T3.
Heart has calmed down but still occasionally starts missing beats etc, usually triggered by stress now.
Back to hospital yesterday, BP down to normal (was very high when there last week but then I did think I was having a heart attack)
Resting heart rate down from 80 to 64 (Fitbit)
No one asked when I last took the meds, T4 & T3 were both taken 8 hours before test.
Blood test results from yesterday (last week in brackets)
TSH <0.01 (<0.01) (0.35-3.5)
T4 14.0 (21.7) (7.5-21.1)
T3 4.2 (11.8) ( 3.8-6)
I am a bit surprised the T4 dropped so fast.
Hospital drs very thorough again, there for 4 hours, but they’re now happy to leave my Endo to sort.
She’ll see me in 3 months to check levels unless I need to see her before. I can ring her anytime, so lucky to have her.
The dr at hospital was telling me that TSH is the only test that matters & they were hoping to see that rise.
I explained it wasn’t going to cos of taking T3.
He went off did a bit of Googling & came back to say “you’re right, I’ve learned something today”
I feel surprisingly well so far on such a reduced dose, plenty of energy, no weight gain etc but I presume this early on that at ‘tissue’ level my T4 is still quite high?
Will see what happens I guess, but I trust my Endo so hopefully it’ll all be o.k 🤞
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