I was feeling great up till 1 week ago I've gone from loads of energy to now tired again currently on 100mcg of levothyroxine
Results from 13th of October below
(TSH) 4.09 (FT4) 17.8
(FT3) 4.2 (T4) 120
(TPOAb) 600 (TgAB) 126.7
I felt horrible with October's results I was on 75mcg when this one was taken.
I'm currently becoming very tired again my moods are worse struggling to get out of bed again now, I've adjusted my diet slightly and removed some inflammatory foods
I have no idea what to do now 😕 I want to feel how I felt for that 5 weeks again my energy changed in a snap of my fingers
I'm being told my levothyroxine needs to be lowered but on 75mcg I felt even worse..
I did a also CRP and cholesterol both came back as optimal
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Cablogin
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I'm being told my levothyroxine needs to be lowered but on 75mcg I felt even worse..
Who said and why?
You haven't given the reference ranges for your results so we can't interpret the FT4 and FT3 without them (ranges vary from lab to lab) but we know that your TSH is well within range so why a reduction in Levo? TSH is the result that most doctors use to alter dose, although realistically it's the FT3 result that tells us if we are over medicated.
Did you do your test as we always advise:
* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH
* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with phlebotomists or doctors.
I did a private blood test by thriva, I did it at 7am. Thriva think I'm on a slightly too high of a dose, but doctors will drop me to 75mcg instead of 87.5mcg.. I don't understand how I was feeling so good then now feel so bad again I'm so cold too
I think thriva ranges
TSH 0.27 to 4.2 and optimal being 1 to 2.5
Ft4 12 to 22 optimal being 12 to 17
Ft3 3.1 to 6.8 optimal being 3.1 to 5
T4 66 to 181
Is this the ranges you needed?
I was only taking b12, iron, selenium, magnesium and spray vitamin d
I avoid taking levothyroxine for 24 as I did bloods
Thriva think I'm on a slightly too high of a dose,
First of all, don't bother with doctor's comments from these private testing companies. They will be the same as any NHS GP (they will have been NHS trained anyway) so to get a proper interpretation of your results then post them here.
but doctors will drop me to 75mcg instead of 87.5mcg..
Why do you say that? Have you shown these results to your GP and he said he will reduce your dose? Most doctors don't accept private test results.
I think thriva ranges
TSH 0.27 to 4.2 and optimal being 1 to 2.5
Ft4 12 to 22 optimal being 12 to 17
Ft3 3.1 to 6.8 optimal being 3.1 to 5
T4 66 to 181
Is this the ranges you needed?
Thriva have a very confusing way of showing their results. Forget their "optimal" suggestions, they are generally rubbish. Always go to the pdf of your results and you will find the results with the normal ranges along side with none of this "optimal" nonsense.
You can find the pdf using the link in the help page
I avoid taking levothyroxine for 24 as I did bloods
Total T4 not a useful test and we know that you have Hashi's.
Your TSH is well within range, in fact a little high for someone on thyroid hormone replacement. Time of test affects TSH so what time did you do your test? If later than 9am then your TSH will show higher than normal. Usually a level of 1 or below seems to suit most people on Levo but, of course, it's a very individual thing.
Your FT4 is very slightly over range and as you left 24 hours since last dose of Levo this shows that you need a high FT4 to produce a middling amount of FT3.
Your FT3 is 56.76% through range. So with FT4 at 106% of range needed to produce FT3 at 56.76% this shows that conversion of T4 to T3 could be better.
Another way of looking at conversion is to divide FT3 into FT4. A ratio of less than 4:1 shows conversion is OK, over 4:1 shows conversion could be better. yours is 4.35 so we're looking at improving conversion.
I was only taking b12, iron, selenium, magnesium and spray vitamin d
Exactly what doses of these are you taking and what are your current levels? Optimal nutrient levels are needed for thyroid hormone to work properly and good conversion to take place. Optimal ferritin level is suggested to be 90-110ug/L for thyroid function, for example.
My doctors don't like the idea of trying slight changes, I was called stupid for suggesting the 87.5mcg or 112.5mcg as apparently they're so small in change it won't do much.. and would rather do, 75mcg or 100mcg.
I did my test at 7am no food for at least 10 hours before I did wake up at 4am that day, I only had water
My next blood test will be by nhs on 3rd to test my tsh only.. I've booked this for 8am
I'm taking ferrous fumarate 210mg once per day at the moment due to constant bleeding from birth control I've had it removed but still bleeding currently I've always struggled to keep my iron levels normal
I'm on slow release b12 for same reason it's always low
No idea on my vitamin levels currently but will get some done on 3rd
Is there any recommendations for bloods I could ask to add in along side my thyroid test?
if your NHS lab only tests TSH, then your GP won't see any reason to reduce dose anyway (assuming your TSH is similar to this Thriva result)
It's only been suggested by the thriva comments due to the fT4 being slightly over range ... the NHS won't know this if they don't test fT4 . So it's too soon to be worrying about your GP reducing dose .
If TSH is where it is now they'll probably say 'fine carry on' .
(obviously, don't mention the thriva result showing over range fT4 to the GP).
But I'm starting to feel unwell again and haven't got the same energy now 😕 I'll see what my results are on the 3rd, but doctors will change my meds without even asking based off whatever my results are. Originally they wanted me to stay on 75mcg.. but I had to fight to go back up to 100mcg
well, i hear what you're saying about feeling great, then less good again. ,,that's not uncommon. i suggest you give it another couple of months to see how you feel once thing's have settled in properly
...... if you don't want a reduction in dose you would need to make it very clear that you feel an overall improvement on 100mcg over the 75mcg .
If you go in and say 'i feel worse again' then you are giving them the perfect opportunity to say 'we told you so, so we'll put your dose back to where we wanted it in the first place' ... so be careful what you say., and how you say it.
But there is every reason to expect your TSH will be similar to 1.3 on the 3rd... so you shouldn't have anything to worry about on that front .
Sometimes the fact that some NHS labs don't do fT4 /fT3 can work in your favour .... if they only test TSH , they don't know your fT4 is over range .. so if TSH is well within range you could even get away with asking for another increase if they only know what your TSH is.... but i wouldn't push your luck just yet.
just make sure you don't give then any ammunition to lower it.
Okay thank you I won't mention anything but will say no meds to be reduced otherwisethey may withoutmy consent they felt 4.9 tsh was fine which is was not.., my tiredness is hopefully linked to low iron or b12 or I'm just having a blip atm with my thyroid.
I am extremely cold tho and my hands become unusable at times is this linked to my thyroid do you know? I mean I'm unable to write, type things like that
yes , the cold is quite likely to be thyroid hormone related . But since we know you fT4 is at the top even after 24hrs without levo.. then just increasing Levo further is not necessarily the best way to try and improve how you feel . Try to optimise the other things seasidesusie suggests that might improve your conversion of T4 to T3 first .. and then see where fT4 is .
How many weeks have you been taking 100mcg now ?.. i have found it really takes more like 10-12 weeks before i know what a new dose will really fell like .. there is often a bit of up and down with symptoms for the first 5/6 weeks.. and sometimes improvements in symptoms happen gradually over a few months .. my last dose change it was 6 months before i realised i was actually a lot better overall.
Some people do seem to need fT4 over range to feel better, but since your GP is obviously not being very open minded, and was reluctant to increase to 100. i don't think now is the right time to go pushing to increase Levo further... and anyway it's better for you to sort the other things first .
I had been on 100mcg for 10 years, till postpartum they lowered me down..
to begin with in postpartum I had loads of energy more than pre pregnancy as soon as it was lowered I instantly started to feel tired they blamed my child but luckily she sleeps through the night has done 3weeks onwards I waited 5 months till I forced them to up my meds felt better within 4 days I was easily knocking out 10k steps the last 5 weeks but now it's barely 5k I feel sluggish..
I had my dose upped from 75 to 100 on 15th of October
Should I give myself another month or so? I just hate knowing how I should be feeling my mental health is worse now because I'm feeling frustrated, I'm struggling to loose weight too it's fluctuating like crazy
I lost 5 stone back in 2016 I understand calories in calories out have to be in a deficit to remove fat I weigh all my food
absolutely yes .... i'd say give yourself much longer to settle back to the 100mcg dose. sounds like reducing it was a bad move ,. and struggling like that for 5 months. well it probably will take a few months to really recover from, and for everything to start working better again.. or at least that's how i look at it.
Seems sensible that if you were well enough on 100mcg before , then you'll probably be well enough on it again if you give it time, and optimise everything else you can.
i look at it in this way "it takes a long time for some of our functions to get unwell with the wrong levels of thyroid hormone , and we can expect it will take an equally long time to get better even when the levels are right again"
.... i find this helps keep my head in the right place and allows me to to see slow improvements. Whereas if i expect to 'feel' better a new dose within a few weeks . it all get's confusing and we get tempted to keep messing with it.
Try not to panic about the weight ... trust your body to be able to move it again once your cells are happy they are going to be given enough thyroid hormone consistently, and you feel better and more able to move yourself.
Just popping back to this, so I've had my bloods taken at 9am today and they've done b12, tsh, t4 and t3 I'm so confused to why they've tested t3 and t4 now since I've argued about my meds being too low 6 weeks ago.. nhs never test those! I was refused a iron and vitamin d Test too even though I mentioned I've been bleeding for 4 months 🤷♂️ I was also refused to leave the doctor a note as I wanted to say speak with me before anything gets changed as last time they just changed my meds without contacting me.
I'm still tired, struggling to get my steps in I'm just knackered.
NHS do sometimes test fT4, and even fT3 ,for hypothyroid people on Levo. My lot always do ft4, and on my records i found out that i have also had 5 fT3's (over about 20yrs)Your GP has probably just asked for them this time to get a better look at what's going off,,, and because you asked for increase, which perhaps they were not very happy to give ?
However, just because GP has requested fT3 doesn't mean the lab will agree to run it ... so results may still come back without an fT3 (and a note saying 'it's not needed' )
Not surprised they wouldn't accept your note .. GP's think dose decision is up to them not you ... but if they do change it, they will let you know by txt/phone call .. and if you don't agree then that is the time to contact them and say you wish to speak to GP about it.
Sorry you're not feeling better yet. do you think the dose increase helped at all ?
.. 6 weeks is still fairly early after a dose change to be sure what effect it will have .. might be worth waiting another few weeks on it before you decide how it feels.
8-12 weeks is when i make my mind up.. even though a blood test will be 'right' after 6 weeks ... it can sometimes take longer to slowly feel better.. for me the first 5 weeks after any dose change are often a bit up /down / rubbish ... so i don't pay too much attention to symptoms until week 6 anyway.
But anyway ... we'll see what these bloods say .. and if they actually do an fT3 that will be very useful.
My increase was brilliant until about 2 weeks ago I've gone back down hill I was easily walking 10k+ now barely managing 5k but I'm definitely doing better than what I was as before the increase I was far worse, genuinely feel I'd like to try 112.5mcg just to see what happens, I've read some people actually split the levothyroxine into 2 doses through the day?
I will try get a print out of my results by end of next week and will post here
Yes .. i now split my 112.5 into 62.5 first thing and 50 at bedtime. I used to do it years ago because i thought it might help with the 'running out of 'go' ' at 4pm... so i started taking half at around 2pm. not 100% sure if it helped or not ... i used to think it did at the time ... then i learned that the half life is so long it "shouldn't" make any difference ... but the GP humoured me and altered my prescription to 2x50's because i said i felt better doing it that way.
Then for a few yrs i went back to taking it all in one go, but my prescription has always remained as 2x50's plus some 25's ... which is actually very useful because it makes it easier to alter my dose a little if i ever want to .
More recently (since i came here and learned that plenty of other people find that what 'should' happen doesn't always happen they way the text book says ) ... i have started splitting it again... not because i 'm any more sure than i was in the past that it makes a difference to how i feel on the day ..... but because i wonder if taking one big lump might lower the TSH more than 2x little bits does ?
The body's feedback system wasn't designed to get one big lump of T4 .. it is set up to get a little dribble all day with slightly more overnight/ early morning .. so it just makes sense to me to copy that a bit closer .... and since doing it, my TSH does seem to have gone up from it's usual 0.05 is to a bit over 1, and (up to a point ) more TSH means better T4 to T3 conversion .. can't be sure if i actually do have more fT3 as not got enough results yet, but that's the theory.
It certainly doesn't make me feel any worse.. the GP thinks i'm nut's ,but they humour me to keep me quiet even though it is slightly more expensive for them to prescribe it this way.
I think you'd be wise to give it few more weeks before considering another increase. I think i was too hasty to decide how i felt in the past .. and now wonder if i might have done better to wait longer.
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even though it is slightly more expensive for them to prescribe it this way. 
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