Having written to you only last week to say that I was feeling so much better - I am now feeling less well and would be grateful for your advice please -
Following an increase of 25mcg Thyroxine to 125mcg - in early June - I have started to experience improvements and the lifting of symptoms allowing me to feel so much better.
However during the past week I have been struggling to wake in the morning and throughout the day I am feeling as if I am treading treacle - no where near as bad as the fatigue I have suffered for the past two years but disappointing to have any kind of set back. I also continue to feel cold and have a lot of hair loss -
My question please, if maybe I will still need a further Thyroxine increase - maybe of another 12.5mcg ? -
You have my latest Thyroid BT results sent last week - I have an appointment with my GP tomorrow to discuss and it would be good to have your advice in preparation for this -
I am still SI B12 EOD and am hoping that this will continue as it has made a considerable difference to how I am feeling.
Many thanks again for any advice that you are able to give me -
Lemondrizz.
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Lemondrizz1
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If I've understood you correctly - and that's not always the case with me - you initially felt better with the increase and then felt worse, right? That is what usually happens. Your body is grateful for the extra hormone, but then realises that it still isn't enough. It just means you're ready for the next increase. So, I wouldn't worry about it, if I were you. Just hang on til the next blood test and see if you can get another increase.
Many thanks Grey Goose - Yes it does feel as if this is what has happened -
When I see my GP - if I am content and stay at the 125mcg level - then I would not be expecting to have any further BT - I think maybe that my low TSH might be of some concern to him, which might prevent him offering a further increase , and is why I suggested a possible 12.5mcg extra if you think that might be acceptable ?
Having felt so much better - I really don't want to feel anything less now.
It rather depends on your labs six weeks after going up to 125 mcg. I wouldn't recommend increasing without testing first. Could you do a private test if you don't want your doctor involved?
Thank you Grey Goose - I will have a conversation with my GP tomorrow and see where I go from there - although I suspect that in order to get a full Thyroid picture of TSH T4 & T3 I will be getting private tests done.
For a full picture it's essential to also have FT3 tested. This isn't done normally with GP tests so consider doing a private test with one of our recommended labs. It can be as little as £32 for just TSH, FT4 and FT3 with a fingerprick test from Monitor My Health and there's a 10% discount code here:
FT3 is needed so that you can see how well you convert T4 to T3. Your FT4 is now top of range, but FT3 is the active hormone that every cell in our bodies need and if this is low it will cause symptoms. FT4 and FT3 should be reasonably well balanced when on Levo only but only you can say if you're at your optimum level, you need to find your sweet spot, nobody can tell you that.
Have you done this test? If not I strongly advise that you do because it's likely that low FT3 is your problem.
My question please, if maybe I will still need a further Thyroxine increase - maybe of another 12.5mcg ?
Your current FT4 level does not support an increase in Levo, it will take you over range and in the long term that is not good. You need FT3 testing to get a full picture of thyroid status.
You also said in your previuos post that you'd come to the end of a 90 day course of folate and B Complex and asked if you should continue or have a break, I replied that you should retest, possibly with a Medichecks thyroid/vitamin panel (instead of the MMH thyroid test), again have you done this because it's important to ensure that your key nutrients are at optimal levels:
Vit D: 100-150nmol/L
B12 - as you are self injecting there's no need to worry about this
Folate: at least half way through range
Ferritin: some recommendations say half way through range, some experts say the optimal ferritin level for thyroid function is 90-110ug/L.
Yes I did receive this - but as I was feeling really good at that time I did not feel the need to get some private BT - this feeling less well was quite unexpected and disappointing but as my appointment is for tomorrow - I was just looking for advice before seeing my GP - but otherwise I will arrange private BT's -
Thank you for your comprehensive reply - I am hoping that my GP will redo the vitimin and Folate tests - if not then I will get them done privately to get the full picture.
"After my last Throxine increase on 16/5/23 from 100mcg to 125mcg - I began to feel an improvement after three weeks
I am enclosing my latest Thyroid BT
TSH - 0.01 (0.3 - 5.5)
T 4 21 (10.0 - 22.0 ) "
Hi lemondrizz , just checking , was that test done 24 hrs after last dose levo ?
and was it done after at least 6 weeks on 125mcg ?
you will almost certainly have a problem with getting an Endo / GP to agree to a further increase at this point due the v. low TSH, and also due to the fT4 being extremely close to the top of the ref. range .
also when fT4 is already this high, increasing it further is not the best idea .( there is recent research showing 'an association between' higher T4 levels and some kinds of cancer cell 'proliferation' ~ nothing definite as yet ,and nothing to panic about ...., but something to be aware of as it's a reason why just going higher and higher with Levo is possibly not the best route to take if there are better options.
you / or GP / Endo should ideally retest to find out what level the fT3 is at with fT4 at this level.
if you have already optimised everything else you possibly can (eg nutrient/ diet wise as recommended often on the forum) to try to improve, then the next step may be to see if you can have trial of a little bit less levo with a bit of added T3 ... but you really need to know what fT3 level is first, before you try going down that road.
if you still have other things to work on , then it may be better to do that and wait a bit longer on this dose to see if TSH / fT4 / fT3 levels change over another few months .
Grey goose is quite correct that feeling better and then having that tail off again is entirely normal .... and when there is still room to increase the Levo dose , then that is the obvious thing to try ..... but, when you run out of room for any more T4 and /or doctor is unwilling to prescribe a higher dose , may you have to look into trying a different approach .
i suspect GG didn't realise your fT4 was so high...... if you did take levo too close to the test and got a 'false' high fT4 result , them there will be a bit more room than it looks like , but if you left a 24 hr gap then there really isn't much room left to add any more T4 .
You could try to get a 12.5mcg increase tomorrow and see how it goes for a few months,,, but if you do, be prepared for you fT4 to go over range and to be asked to reduce to 125mcg again after next bod test .
or you could just give yourself another few months on this dose to allow it to settle for longer .... it was only very recently that you were feeling pretty good on it... so don't ignore the possibility that this 'feeling worse' again is just a blip and you might feel a bit better again in a week or so ....... you've had about 8/9 weeks on this dose so far ... sometimes we cant be sure its' really settled in' until more like 12 weeks, and improvements can slowly continue to build for many months after that.
Tattybogle - many thanks - this is so helpful and all the information that will allow me to have a good consultation with my GP - tomorrow -
Yes the BT was taken after your full protocol - 9am - fasting and no Thyroxine for 24hrs until after BT - and no Biotin for 7 days prior to test. Really grateful to you all for this information as Surgery totally unaware of it. The BT was done seven weeks after the increase.
I will speak with my GP about checking my T3 - he has been really helpful and does listen but any requests by him for a T3 BT has been ignored by the labs and we have been pleased to have at least got a TSH and T4 - result. As originally I could only get a TSH !
As you suggest I may try and hold off in the hope that this is just a blip and give it a bit more time ? I know I have to be patient - but after two years of feeling so ill - having at last made progress and feeling better - I don't want to feel less well again.
i agree it's one thing to get used to life being a continuous hard slog and kind of accept it and be able to keep going without panic .. but when you've had a few weeks or months of feeling like a person again, it becomes so much harder to deal calmly with feeling naff again.. it feels like you're being sent back to prison and the fear is very real and panic can easily set in .. unfortunately this is when we are most likely to make hasty decisions that can sometimes be wrong and set off a whole other chain of variables to try and juggle .... and often just doing 'keep calm and wait longer' instead would have allowed us to learn something useful.
assuming you are not given an increase tomorrow ( it's quite unlikely they will agree) .. i would continue on this dose for eg another month.. see how it goes .... save up and get your own TSH / fT4 / fT3 test done in a month ( could just use Monitor My health for about £30 if money is too tight.. but if you need any vits etc done may be better to splash out and get a whole package that does all at once ... but i appreciate this is no help of you just can't afford it full stop )
Thank you so much for all your information and reassurance - you are so right in everything that you have said and guess it is from your experience - ?
I do know that feeling better, I have been doing more, because I have had more motivation and felt up to it - so am wondering if this might have something to do with feeling less well ? So am making an effort to take it more quietly for a while and do less in the hope that will help to turn things around again.
It has been so good to start to live again instead of just existing but ............ ?
Could be that yes , .......feeling better can very easily lead to doing more than your body is fit enough to sustain when you've been 'parked up' for a long while ,..... when you are enjoying being able to do something you've wanted to get on with for ages, it's very hard to reign yourself in ... it's not surprising we sometimes pay the price for it and set ourselves back a bit ...don't worry , no reason why the set back would be permanent... just make a conscious effort to be more moderate and consistent with your daily activity for a few months .. do little bits of it in stages with rests in between , not all of it at once , stop before you want to , 3 very brief bits of gardening over the day , one plant at a time ... not a whole afternoon doing it .. that kinda thing is the was to sustainably build up to more activity without crashing .
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