Dont want a reduced dose

[Flowerpot108]

how do I prepare for a conversation with my GP about how I don't want nor need a reduced dose of levo?

I don't have any of the symptoms of being overactive and if they reduce my dose I know I will feel awful.

[SeasideSusie Remembering]

You might not have much choice with those results.

When did you take your last dose of Levo before the test? Last dose should be 24 hours before the test. If you took your Levo before the test then tell the GP and say the result will be a false high FT4 and can you retest taking Levo at the correct time

If GP wont agree compromise on a small reduction of 12.5mcg and see how you go.

[Flowerpot108 in reply to SeasideSusie]

Yeah this is a repeat test as I accidentally took meds before my last one 😬

[Aurealis]

Ask for a repeat test to check there hasn’t been an error, as you feel well.

[tattybogle]

previous post ~fT4 was 33 ish but you couldn't be sure if you 'd taken levo before test or not so tested it again.. so if you definitely left 24hrs before test this time , and fT4 is still over range even after 24hrs , then it does seem to indicate that a slight reduction of Levo dose might be good idea ... and you may have no choice as GP's are not meant to continue to prescribe 150mcg on those results. If you try a slightly lower dose and it proves unsatisfactory , then it may be possible to get GP to agree to reinstate the 150mcg even if fT4 is still over range, (mine did ,after an argument) but it is unlikely they will continue to prescribe 150mcg at present without you agreeing to at least try a lower dose first.

suggest you say to GP that when you were previously on 125mcg you found quality of life unsatisfactory ( TSH was 5 ish , and you could not manage at work etc ), so you can't agree to go back to 125mcg , but are willing to negotiate a smaller reduction and try it for a couple of months ie . 137.5mcg /day (125mcg + half a 25mcg daily) or even 143mcg /day (150 for 5 days / 125mcg for 2 days )

if they get difficult about it , raise the issue of referral to endo re. T3 prescription ... hopefully that should shut them up .

I find 12.5mcg is enough to make a difference. My fT4 went very over range on 125mcg no obvious symptoms of overmedication ... GP reduced to 112.5mcg ,, felt a bit naff/ slightly undermedicated for the first 5 weeks but then started to feel ok again from then onwards ... however as fT4 was still over range GP insisted i reduce further to 100mcg .. that was definitely too much of a reduction.. i ended up totally constipated and a zombie after 6 weeks ...spat my dummy at GP and said i was putting it back up myself. regardless of whether the fT4 was still over range or not .. it was still over by quite a lot , but he agreed to reinstate 112.5mcg or 125mcg whatever i wanted,. as he didn't want to make me unwell . i chose to go back to 112.5mcg and to be honest after a few months i realised that on balance, 1125.mcg was actually better for me than the 125mcg dose was ... i slept better .

This whole episode did cause me quite a big loss of well being over a period of a few months, but i'm fairly convinced that if i'd just reduced to 112.5mcg and stayed there without going on the further adventure to 100mcg .. i would have been fine .

Also , it's worth considering ~ Very high /over range fT4 is not without some potential concerns , even of you don't feel symptoms of overmedication.. ie. there is a recently discovered connection between some sorts of cancer cell proliferation and higher fT4 levels .... and TSH below 0.03 does also have a significantly increased risk profile , whereas TSH 0.04 and over, does not have anymore risk than TSH 'in range' ... so it's definitely worth trying to tweak your levels very slightly if you can do so without making yourself unwell.

[Flowerpot108 in reply to tattybogle]

Thank you very much!!!!

[tattybogle in reply to Flowerpot108]

ps in case you need some science to throw at them to prove TSH 0.04 and above has no greater risk than in range TSH.... see my reply to this post (3rd reply down) healthunlocked.com/thyroidu... it contains link to the research paper i used, and several other useful posts.

[SlowDragon Administrator]

Perhaps agree to 137mcg 4 days week and 150mcg 3 days

Retest in 6-8 weeks

[fiftyone]

I know what you mean. I am in exactly the same position. TSH 0.005, T4, about five points above range. T3 high but normal. I had to change my doctor (within the same practice) to a GP w ho claimed he had a more 'holistic' approach. I now always point out that my T3 is normal and that is the active substancce, and I have, as you say, no hyper symptoms. I have changed my GP practice now and I explained that these figures were 'normal' for ME. This has been accepted, thank goodness. I think you have to ask the GP to examine you for hyper symptoms , , ,there are none, of course. I have had these high figures for years on 175mg levo daily. I was also referred to an endo for a telephone consultation. He, too, got hot under the collar cos of my results but I had to explain, in no uncertain terms, the he just had computer figures in front of him. He wasn't examing me and I felt perfectly well. . .no hyper symptoms. He presumed my body had adjusted to the high dose and left things as they were. I have had to be very insistent and challenge doctors to find hyper symptoms. I too feel poorly within a couple of weeks and suffer pulsatile tinnitus if the dose is even slightly reduced.

[Loopnova]

I once had a result of 0.05 and managed to stay on the dose I was on as I explained how I felt fine. I’ve gone up a little, still under 1, but feeling some symptoms, so I think my personal optimum level sits lower than the average person and the ‘normal’ range. Docs really need to stop being so focussed on that range.

[serenfach]

I had a suprise test and had taken my meds 2 hours before, and the T3 was 0.1 over the range. The GP phoned and said he was dropping my dose of Levo down from 100 to 50. I said no. He started arguing saying taking my pills before the test would not make any difference! I asked if he would say the same to a diabetic patient.

I then shut him up completely and said "oh, you have used the male range, but I am female". There was a silence, and he sighed and said "oh, and fine" and rang off. Of course the range is the same but it showed his depth of knowledge, and I very much doubt if he would check!

[Charlie-Farley in reply to serenfach]

Brilliant 😊👌

[Flowerpot108 in reply to serenfach]

So bad that they gave so little knowledge when it's such a common condition and they are prescribing medicine and monitoring the condition!

[Flowerpot108]

So as an update to this, we agreed to lower my dose to 150mcg 3 days a week and 135mcg 4 days a week. As a result I have found that I've slept better and my periods have been a bit more regular.

I think when you've experienced how awful it is to be undermedicated there's a real fear of changing anything that could bring those symptoms back.

However, it does appear that cutting out gluten, dairy and soy and bringing meat and fish back into my diet has helped lower my antibodies, and in line with that, my TSH has dropped and I've needed a reduced dose.

I'll be having my follow up test to see if I am in range soon and will be interested to see what the results are.

I appreciate all the comments as they helped me make a proposal on lowering my dose gradually, rather than dropping right down to 125mcg every day, as I know the GP would have got me to do and would have made me feel awful. And gave me the confidence to push back had I needed to, if the smaller change had made me feel worse. So thank you very much!