My gp lowered thyroxine from 100 mcg to 75 mcg beginning of March . Initially the replacement med they changed to Teva ( previously on Accord ) I took for 7 days had burning feeling in my arm muscles . Had prescription changed to combo Accord/mercury after speaking to pharmacist.
Some of my initial symptoms have eased particularly tiredness but I’ve still got this tight ache in arm muscles and neck ?
I’ve read it can take months for body to adjust just wondering if this is what others have experienced ? Due to get bloods done in approx 4 weeks
Thanks again
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Nutty56
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If you were fine on Accord then just stick to that brand, no mixing and matching. Ask for 100mcg and 50mcg or all 50mcg. You can take one and a half 50mcg tablets daily to give 75mcg, or you can alternate 100mcg and 50mcg to average 75mcg daily.
Thanks SeasideSusie I wasn’t sure if it was the dose reduction or taking the Teva although pharmacist told me Teva would be out of my system in a day !
pharmacist told me Teva would be out of my system in a day !
Pharmacist doesn't know much. Levo has a half life of 7 days so half of it would be out of your system in a week, then after another week half of what was left, etc.
But don't rule out reduction in dose causing a problem. What was the reason for the reduction? Do you have your test results plus reference ranges. Most doctors adjust dose just by looking at the TSH which is wrong, they should look at FT4 and FT3, with the FT3 result being the most important one and showing whether or not we are overmedicated. If TSH only was tested you may have had your dose reduced when it shouldn't have been.
I had a list of symptoms tiredness , hot flashes particularly at night , lost weight generally felt awful I had had bloods done in feb before I came across this group
TSH 1.6 (0.27-4.20 )
T4 24.7 ( 12-22)
Gp did say could go back to original dose if things didn’t improve but I felt so awful I was willing to try anything!
Your TSH is telling us that you may possibly benefit from a dose increase. Generally most people on Levo only feel best when TSH is below 1 with FT4 and FT3 in the upper part of their reference ranges.
However, your FT4 is over range which may suggest that you took your Levo before the test and it's measured the peak after ingestion rather than your normal circulating hormone. We suggest leaving 24 hours between last dose of Levo and blood draw. When did you take your last dose?
Do you have autoimmune thyroid disease, known to patients as Hashimoto's, which is the most common cause of hypothyroidism. Having raised thyroid antibodies would confirm this, or an ultrasound.
I’ve been on Levo for about 15 years for under active thyroid ( my understanding) never had any probs until 6 months ago when started with all symptoms
Levo peaks in the blood 2-4 hours after ingestion, your FT4 result is showing a false high as the blood was likely drawn at the height of the peak or just after. It's unlikely that you needed a dose reduction (your TSH doesn't suggest this) but as mentioned it's the FT3 that is the most important test. Most NHS labs don't include FT3 even if a GP requests it which is why so many of us do private tests for the full thyroid function test - TSH, FT4 and FT3.
I had taken Levo 7am ish had bloods done about 1pm but I wasn’t aware of any timescales when I had them done ? It was only when I started to read up on thyroid that I came across this forum and advice re bloods ?
Taking levothyroxine before blood test causes false high Ft4
Test TSH at 1pm is the lowest point in the day for TSH
So very unlikely you needed to reduce dose
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Had you done this results might have been significantly different
Eg perhaps TSH 1.9 and Ft4 17
Just testing TSH and Ft4 is completely inadequate.
Most important results are always Ft3 followed by Ft4
Never agree to dose reduction without getting FULL thyroid and vitamin testing done and with private testing always test early Monday or Tuesday morning before 9am and last dose levothyroxine 24 hours before test
Essential to regularly retest vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking
List of private testing options and money off codes
Either because they don't know, don't care or a bit of both. They also don't tell thyroid patients about not taking biotin or supplements containing it for several days before a test. Biotin interferes with thyroid testing.
Yes, things do take quite a while to settle down and improve if you were slightly overmedicated.. think in terms of 'ignore how you feel for the first 5 weeks, then pay attention to week s 6--8 onwards'. and then decide if the original symptoms that led to you going to the GP have improved at that point.
However , your TSH really didn't look as though you were overmedicated when your dose was reduced .
Your fT4 was very high on that test .. 24.7[12-22] and while part of that is because it is still showing the high level in your blood from when you took that last dose. (There is a 'false high ' lasting from about 2 -6 hours after you take the tablet ). But even taking that into account, your fT4 would probably still be pretty near the top of the range if you'd waited 24hrs from last dose .. at a guess i'd expect it to still be 22 ish even after 24hrs .
Do you have any previous fT4 results (with the same 6 hour gap from tablet to test) to compare this result to ?. eie. Is your TSH lower than your 'usual' ? ,is your fT4 higher than it's 'usual' ?
Your TSH is going to be at it's lowest at about 1-2 pm each day ... so your TSH if tested earlier in the morning would have been a little bit higher than 1.6 .. it might have been about 2 ish or slightly over.
(This is just a guess at the numbers ,everyone will be a bit different in how much their TSH changes each day)
Trying a slightly lower dose is always worth doing first if symptoms suggest it.. and you do need to try it for long enough to make sure if it helps... i used to make the mistake of thinking "these first 3/4 weeks have felt so naff, so i must go back up to my previous dose".. but i now know that improvements after being overdosed can take many weeks of stability on a lower dose to come to fruition.
So , stick with it for a while .. especially since the Teva adventure will have muddied the waters. but if you give it a decent try and then find the original symptoms haven't improved,, then go back up. and reconsider next move .
Sometimes my fT4 wanders around all over the place, and for me , going over range with fT4 usually doesn't relate to being overmedicated .. however my TSH does... if i'm at 0.04 i'm fine , but if it drops to 0.01 i'm usually overmedicated, and get symptoms to match.
Thanks tatttbogle the only other results I have are from December when I initially saw GP as I felt so badTSH 2.3 (0.27-4.20(
T4 21.7 (12-22)
Never had T3 done ?
Gp did say to try and see if helps can always go back to original dose ?
I have had an issue with a blood pressure med in past with this muscle ache which cleared on diff brand so I keep thinking now is it with the 2 brands of Levo 🤷♀️ I feel mentally drained 🥴
Mmm.. so ft4 was pretty high then too. don't suppose you can you remember what time of day that test was, and time of last dose ?
I think that some people maybe do feel lousy and overmedicated with a very high fT4. so lowering it is the most logical thing to try first .. but it would be really unusual to feel overmedicated with TSH of 2 ish... so something else is going on here.
I think the next thing you will need to do is find out what your fT3 level is ~ you want to know what all 3 are (TSH fT4 and fT3 all done together) ~which you might have to do privately if GP is unable to get it done.. some times the lab won't agree to do fT3 even if GP asks for it.
Constantly getting different brands did make me feel lousy on Levo . (particularly Teva, which i don't have anymore ) ,and it did take a few weeks to feel better even once back on a brand i liked.
There's a lot to be said for keeping to the same brand as far as possible .. it makes dose decisions a lot easier because otherwise you can't rule out that its the different brand making you feel naff.
pharmacist's and GP's will usually look at you in a condescending manner if you suggest you feel different on different brands ,, but they are wrong .. some of us can tell a difference.. and constantly changing brands is just a rubbish way to treat anybody for anything if they are still having problems.
OK so give the lower dose a try for a bit. Personally i'd only want to reduce to 87.5 not 75, as i've come to the conclusion that 25mcg adjustments are a bit of a 'sledgehammer to crack a nut'
and given the timing of your tests we can assume that your 'real ' fT4 is not over range by very much at all.
It is good that the GP is taking symptoms into account. when the blood picture is confusing.... unfortunately it is notoriously difficult to tell slight overmedication from slight undermedication by symptoms alone.
But if you try 'lower' first , then at least you can rule it out one way or the other.
if you go with the 'you need more ' school of thought and it doesn't work, you'll never know if slight overmedication was the problem .
Yes , i think? they do only do 50/100.. so for example if you wanted to get 87.5 you'd have to do 75 one day and 100 the next.. because splitting into quarters isn't very realistic.
When splitting Levo tablets, as long as you take 'the other half the next day' then any inaccuracy will even itself out.
You just don't want to cut a load of them up all at once because even of you manage to cut exactly , there is no guarantee that the T4 is equally distributed throughout the tablet (it 'should be' if the tablet has a manufactures split line pressed into it, but not necessarily if it doesn't) .. so if you cut up loads all at once you could end up taking a weeks worth of the halves that had less in.
Thanks again don’t think there is a manufacturers line on them ? But I have def learned something cos I was actually chopping up the 100 while I was waiting for prescription but throwing the odd bits away so god knows what I have been taking 🥴🥴
Hi tattybogle following our conversation GP has upped Levo to 87.5 started this 5 days ago with aim to get bloods checked 6 weeks ! From your experience how long does it take to kick in I now have bad muscle ache / tightness in shoulder/ neck ( never had before ) but fatigue seems better? It one step forward to back !!
Can I ask did you get any additional symptoms? Since the drop in dose I’ve now got this stiffness/ache/hot feeling up my arms back and neck … never had this before so debilitating!
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