doctor wants to reduce

[HollyF86]

Hi guys my doctor wants to reduce my medication. Would you say I am over replaced going off these bloods ?

I feel, a bit more tired that usual I suppose. All vitamins are optimal and the test was taken correctly. Thank you x

[TiggerMe Ambassador]

I'd agree... but just by a small amount, what is your current dose?

[HollyF86 in reply to TiggerMe]

it’s a 112. I really don’t feel I could remove the whole 12, i was unwell on 100mcg x

Is it the tsh youre looking at or would you say the ft4 could be a smidge lower ?

[TiggerMe Ambassador in reply to HollyF86]

When your TSH lowers it effects conversion tying in with your fT4 being a bit high so I'd suggest alternating 100/112.5mcg and see how you feel in 8 weeks

[Tina_Maria]

I would also be wary to reduce too much. If you want to take a more cautious approach, I would just go to 100 for 2 days a week in the first instance and see how you do with that. I guess the reason you are on this dose is that your free T3 can come up to that level.

Don't do it because of the TSH (but I know that will be the major reason why your GP wants you to do that), as even with alternate day reductions, it will most likely not bounce any higher.

See how you feel with 2 days a week after 3-4 weeks, if you feel good, you can then try to reduce it further. If you feel hypo symptoms coming on, you can slightly increase again. At the dose you are at present, you may have to play around a bit to find your exact sweet spot.

Of course we do not want to have the TSH suppressed or the T4 that high, but without any other alternative, we maybe have to accept that this might be the only way we can really feel well.🤷‍♀️

[HollyF86 in reply to Tina_Maria]

Thank you so much, I’m know I’m not far off. Im certain I won’t be on the same daily dose.

The thought of 100 on ANY day is quite scary, but I’m almost there.

[tattybogle in reply to Tina_Maria]

i'd argue waiting slightly longer than 3/4 wks ... my experience of 2 reductions has been that even by wk 5 i would have been adamant that lower dose was too little , but by wk 5/6 onwards things were stabilising /improving again and ultimately by about 2/3 months i realised i felt better on lower dose than i had on previous dose .

another time i reduced , i just kept feeling more and more hypo after 5/6 wks ,,,, so it's a difficult call to make, re . how long is long enough ,,, but at least i was then certain that a lower dose was not the answer...if i'd have gone back up after 3/4 wks i'd have never been sure .

[Tina_Maria in reply to tattybogle]

That's interesting, I am playing around with my dose at present as well. I have reduced it by 11.5 for 3 times a week a while back. By week 4 I felt really awful and went up again (like a shutter in front of the eye, that improved slightly as the day went on). Tried it again with 2 times a week and okay so far (2 weeks in). I think it is difficult to gage (and how long you are prepared to feel off), perhaps when you have been on a certain dose for a while, you notice it more, so perhaps trying gently at first might be the best thing. I will try to give it a bit longer though this time. I know my TSH will never budge (suppressed from start of therapy even on 50mcg!), but my T4 is bang on top of the range, hence I try to slightly lower it a bit if I can. Fingers crossed!

[tattybogle in reply to Tina_Maria]

my main reason nowadays for not wanting my ft4 at top end is to do with research showing higher fT4 levels potentially causing / associated with, cell proliferation in certain kinds of cancer. i've had precancerous changes in cervix removed twice previously, and currently just had BCC removed from eyelid , so really don't want to be doing anything that will encourage the buggers to come back / grow faster .

[Tina_Maria in reply to tattybogle]

There might be an association of high T4 with cancer, but an association does not equal causation and there are many cellular changes involved in the development of cancer, it is usually not only a single thing (there are usually a multitude of pathways affected and thyroid hormones are just one factor that can influence them).

I have seen the study that has mentioned the higher cancer risk in people with higher T4 levels, but you cannot account statistically for that many variants. They also only measured thyroid function at baseline, so they did not measure any changes in TSH or Ft4 in relation to cancer, which would have been very interesting. They also excluded patients on thyroid medication, hence it is difficult to extrapolate these findings to someone taking medication, as we know our TSH/T4 axis can be significantly altered.

It is an interesting finding and of course, if we can function with less thyroid hormones that is great, but things are never as black and white and there are many more pieces to the puzzle than just T4 levels.

[tattybogle in reply to Tina_Maria]

i was looking more at the specifics of T4 action on cells rather than the statistics,,, eg this one about BCC ( Documented and projected actions in vitro of thyroid hormone as L -thyroxine (T4) on basal cell carcinoma of the skin ) esmed.org/MRA/mra/article/v...

[tattybogle]

i agree , i'd try reducing dose by just a smidge as suggested above ~ not because of TSH specifically , mainly because T4 is top end and you don't feel great . so 'a bit less' is worth a try .

note : body can take several weeks to adjust to even small reductions , in my experience a lower dose that will ultimately feel an improvement can feel pretty hypo for the first 4/5 wks ,but can then start to improve .... so give any reduction a good 6-8wks before you make your mind up .

[HollyF86 in reply to tattybogle]

Thank you that’s good to know, I didn’t realise I might feel worse before better or that I have to wait that long to retest !

[tattybogle in reply to HollyF86]

in the past , i've made my mind up after abut 2/3 wks and insisted on going back up because i felt worse ,,,, i now realise that may have led to me being on slightly more levo than i needed for umpteen years ..and that some of the vague symptoms /muscular pains i had for all that time could have been due to slight overmedication..... eg a long standing sacro-illiac / back / shoulder / neck problems just melted away after a few months on slightly lower doses ..... could be coincidence , but i wish i'd tried slightly lower doses for longer than i did (before spitting my dummy)

[Buddy195 Administrator in reply to tattybogle]

Honestly tatty… this is 100% true of my symptoms. Previously SI / neck pain resolved when my FT4 dropped from being near top of the range. We all have different ’sweet spots’ where we feel most well. I’ve found making slow and steady adjustments (as needed) very helpful.

[tattybogle in reply to Buddy195]

i think to be honest, after so many yrs of being made to feel like having hypothyroidism was 'no biggie ' by every GP i discussed it with , i felt that any GP suggesting my dose was slightly too high , was equivalent to them saying , "you are less unwell than someone who needs more levo"

not logical i know now , but that's how it made me feel at the time ..... and since my symptoms were very far from 'no biggie' , and had effectively destroyed life as i knew it before ,i was so extremely resistant to any idea that i might need less, that i never gave lower doses a proper chance back then ..... mind you , GP never explained how long it could take to adjust to lower dose either , so it's not just my fault for being stroppy about keeping higher dose . Better education all round was lacking.

[HollyF86 in reply to tattybogle]

 tattybogle is it possible that the dose my body will like is so finely tuned that it could be tiny increases / decreases in certain days of the week? In the past I have suggested to my gp that I really feel my dose will be like that but he sort of scoffs at me and says my body wouldn’t notice such tiny increments. I feel I am super sensitive to levothyroxine and I DO notice tiny bits.. is anyone else like that ? even 6mcg either way I would notice over a week or so, I’d get constipated and a puffy face, or if I increased I could easily feel overmedicated by the Sunday

[tattybogle in reply to HollyF86]

i can notice effects from 12.5mcg up or down by about 10 days , it would have started to have a small but noticable effect on bowels / energy levels / brain clarity by that time.~ not sure about 6mcg it's a long time since i changed dose by that little and i wasn't taking notes .

if i accidentally forget a morning dose i can tell by about 11am /lunchtime that something is not right , it's only very subtle , it just feels a bit like i'm running on adrenaline / realise i'm talking too much/ but my work is unfocussed /scatty . Before i tuned in to myself as well as i am now , if i missed one day by accident , it was very likely i'd forget the next days too , cos my morning routine would be all over the place the next day.

you're not imagining it , some of us are a bit 'The Princess and the Pea' ...some are a bit more 'rhinoocerus'

[HollyF86 in reply to tattybogle]

Thanks for this. I relate to everything you so it’s kind of comforting to know really because sometimes I really feel so alone in this and it’s so hard to explain to my husband ! I really feel like only the people who take levo understand how it affects you and the feelings you get on a daily basis sometimes. God it’s exhausting ! but we move 😆

[HollyF86 in reply to tattybogle]

I’ve done this so many times !! Made me laugh.

[Buddy195 Administrator]

I’m a huge fan of making low and slow adjustments so, as others have suggested, try a small reduction 3 to 5 times a week and retest after 6-8 weeks of being on a consistent dose.

[HollyF86 in reply to Buddy195]

Thank you , I’ll do that