Hi all, just got results from endo tsh 0.49 (.350-5.50) t4 1.24 have had my levo reduced, review in 6 months, when only tsh will be tested

[Tatty10]

Totally ignored my feelings that its the best i have felt since my tt in august, why reduce if i feel well really confused and upset

[Clutter]

Tatty,

Treating your TSH, not you What has dose been reduced from and to? What is the range for FT4? Was your TT for reasons other than thyCa?

[Tatty10]

Prescribed125 micro self medicate 3 days a week 150micro, had tt for multi nodular toxic goiter, i am feeling so well, i dont want to go back to post op days feeling crap all the time

[Clutter in reply to Tatty10]

Tatty,

I asked because I noticed your TSH isn't suppressed.

You're already self medicating so why not ignore the endo and continue as you are? Do you have the FT4 range?

[Tatty10 in reply to Clutter]

Hi clutter my t4 is 1.37 range (0.8/1.9) so within range, he has reduced my dose to 100 micro the same starting dose after my tt and my tsh then was 44.742 i am at a total loss and then to say in future only my tsh will be tested why will these so called specialists not listen to what we say we are all not text book cases and i want the correct treatment for me.

[Clutter in reply to Tatty10]

Tatty, TSH after total thyroidectomy is often high and T4 regulates it. I stopped meds for a few weeks and TSH rose to 107.5 and was back down to 0.16 on 100mcg in 4 weeks.

You shouldn't worry that your TSH will become elevated to 44 again, but you shouldn't be worried that medication dose decrease will affect your well being either.

Personally, I don't understand the relevance of TSH testing in thyroidless patients other than to ensure patients like me continue to be suppressed.

Perhaps you could write to the endo &/or head of dept asking for clarification on the issue and asking that FT4 continue to be tested at your next bloods.

[Tatty10 in reply to Clutter]

Hi clutter thanks for the reply, this whole thyroid thing is so confusing after years of suffering then finally got diagnosed then treatment i really thought i would get well again but its all such a struggle to understand what the medical people are trying to achieve, all i want is to feel normal and well and happy and i really believed the old story after your tt just take one tablet and all will be well i dont think so

[Clutter in reply to Tatty10]

I think we all fell for that one and it does work for the majority when they're not dosed according to TSH.

You've already sorted out what level of medication you feel well on. Don't let the endo dictate to you otherwise.

[Tatty10]

Hi Clutter will post the range later , think i will have to keep self medicating as i really do not want to go back to feeling undermedicated, ijust dont understand why these doctors will not listen to how i feel, is it normal too have a low tsh and normal t4

[Clutter in reply to Tatty10]

Yes, low TSH and normal FT3 and FT4 are quite normal. HPA set point can be altered in thyCa patients on suppressed therapy, patients who have become hypothyroid after hyperthyroidism and by long term Levothyroxine use.

[shaws Administrator]

I wouldn't reduce it. The fact that you say you have been well since your TT I do not understand why he has reduced your medication.

Your Endo doesn't understand how metabolism works and is only going by your TSH and it is obvious that he has disregarded your statement that you are well.

Read the first and second questions in this link. We appear to have more knowledge that the 'experts'.

web.archive.org/web/2010103...

[Tatty10]

endo says my tsh is too low, but why my next blood test in 6 months he will only check tsh,

i am not going to reduce because i know it will make me feel ill

[Clutter in reply to Tatty10]

Galathea has a good response to endo fuss about low and suppressed TSH causing osteoporosis, S/he offers willingness to have a Dexa scan to measure bone density.

[wombatty]

See my post (not question) of 18 days ago for the abstract of a research article demonstrating that patients on T4 have more heart and cardiovascular problems when their TSH is in the mid- to high-"normal" range than at the low end of the range.